[Music]

Tricia Kenney: Hello, everyone, and welcome to AWN radio. It is Monday, February 14, 2011, and I am your host, Tricia Kenney. Happy Valentine’s Day, everyone! I hope you’re having a lot of love, spreading a lot of love, just being a loving person today. Today we have a special guest, Valerie Paradiz, and she is the Director of Special Projects at the Autism Research Institute. She was diagnosed as an adult, and she’s done a lot of work since then. She’s going to share a bit of that with us today. Welcome to the show, Valerie.

Valarie Paradiz: Hi, thanks, Tricia. It’s nice to join you.

Tricia Kenney: Well, we certainly appreciate you being here. First of all, could you tell us a little bit about your diagnosis? When did that happen and how did that come about?

Valarie Paradiz: Oh, sure. Well, my diagnosis took place seven years ago, when I was 40 years old. It seemed to coincide very nicely with that move into my forties, and [chuckles] I have to say, it was sort of a critical mass situation for me at the time. I was really struggling with employment issues, and I’m a single mom of someone on the spectrum—my son, Elijah. And I guess, really, that particularly prompted me to finally get evaluated. As did my dear friends on the spectrum, who did an intervention with me at the time and just said: “Val, you know, you’re really struggling personally and professionally right now. You’re busted; you’d better go do this formally and find out for sure.”

So I went to NYU Hospital in New York City, and I participated there in a study that was currently taking place that was on adults on the spectrum, andp went through a battery of evaluations and tests and video interviews. A multidisciplinary team studied all the results, and I’m diagnosed with Asperger’s.

Tricia Kenney: But you had your suspicions about that before any of the e-mails?

Valarie Paradiz: Oh, yes, for many years. I think I had a running narrative in my head that I was a parent of a child on the spectrum, and therefore I had lots of shadow traits of autism. I had read the book Shadow Syndromes back in the mid-to-late ’90s, which was exctremely influential for me, in terms of just informing myself about what we parents of children on the spectrum might be experiencing. I just think I was so focused on holding it together: getting the bills paid, making sure Elijah was getting the best supports we could possibly drum up for him at the time.

But I was putting pursuing an evaluation on hold for probably too long. Finally, when I did do it at age 40, it was quite a big relief. There was a period of adjustment. The nice thing is, seven years later, I can say that I absolutely adore my work. I feel very secure in that regard, and I learned a lot once the diagnosis happened: how to work very proactively with my own challenges and strengths, rather than reactively.

Tricia Kenney: Right. And I think that’s a huge difference in outcomes for people. You can take that in and just be like: “Okay, I’m autistic and everything just has to be this certain way with me and that’s all there is to it.” Or you can learn about yourself a little bit more and figure out where you can find your niches in life.

Valarie Paradiz: Yes.

Tricia Kenney: So what did you start doing that helped you, career-wise?

Valarie Paradiz: Well, I think what I learned around the time of the diagnosis was that as much as I enjoy directing programs…I had first started a school called the Aspie School in 2003. It was for middle- and high school aged students on the spectrum. I directed that for three years, and by the time I was in the third year, I was beginning to feel a lot of the pressures of interpersonal communication day-to-day with the staff.

Prior to that, I had been a university professor. I taught at Bard College in upstate New York. It’s a small, private liberal arts college, and I literally was just under the radar there. I never went to faculty meetings; I never joined any committees or did any committee work. And I truly thought that if I just did my research, which I was very, very good at and published a lot, that one day someone would just come in the room and say: “Okay, you’re tenured, Val.” [Chuckles] I did not know that I needed to develop social networks. I did not know I actually had to engage in campus politics in order to have a more established position there and something I could rely on.

So when I started the school, I left academia and I basically started it because my own son didn’t have enough support in what was available in our community at the time. I knew many, many other young people like him who also weren’t. So anyway, I ended up directing that program and got tons of media attention. It was on the front page of the New York Times; it was featured in Redbook magazine. We were on Japanese public television. It just seemed like the media kept pasing through there every other week.

Tricia Kenney: Wow.

Valarie Paradiz: I got very stressd, and that’s when my friends on the spectrum—and by then I should’ve been reading the writing on the wall, so to speak. All my good friends at the time were on the spectrum [Chuckles]—and they said: “You know what, Val? If you like running this program but you’re not sleeping” and my GI issues were so severe I’d have to stay home from work sometimes for days at a time. The sensory issues got so challenging because of the fatigue from the interpersonal communication all day long with the staff and the families and the kids. They said: “You’d better get yourself evaluated, because you could really lose something really good here, with the school.”

So the school lost funding after three years, and I was invited to bring that model to NYU in New York City at the Asperger Institute. And there I had to navigate really significant politics, build another new program from the ground up, live in New York City, which is as my friend Stephen Shore says, a sensory assault. [Chuckles]

Tricia Kenney: Yeah, I was going to say, that’s got to be a sensory nightmare. [Chuckles]

Valarie Paradiz: Yeah, and doing a big administrative thing, lots of staff, lots of interactions all day. I was getting better at it by then because I had the diagnosis, but I’m still in the adjustment phase after the diagnosis, where you’re juggling a lot of identity issues all in a mix. Do I out myself at work or not? And if you’re working directly with families whose kids are on the spectrum, you know that’s tricky. All those things were coming up. I guess I’m giving you a very long answer to your question.

Tricia Kenney: [Chuckles]

Valarie Paradiz: Today I just run my own consulting business. I do love being part of something that’s bigger than me. That’s why I love having ARI, the Autism Research Institute, as one of my biggest clients. I do a lot for them and I travel all over the country doing larger contracts for school districts and agencies—mostly training staff—and learning how to support individuals on the spectrum in learning how to advocate for their own sensory and social needs.

Tricia Kenney: Do you do that at all age levels? Are you doing primarily high school or middle school?

Valarie Paradiz: All age levels. It started out with middle and high school, and then I developed a curriculum. It’s called the Integrated Self-Advocacy Curriculum; it’s published by the Autism Asperger Publishing Company. It was really written for teachers, support providers, therapists, families to sensitize them to just how important it is for someone on the spectrum to be given the opportunity to learn to advocate for him or herself. Quite often, I think professionals are actually trained so well in their respective fields that they overlook the places where it’s best to step back and let someone advocate for something that they might require to feel more comfortable or integrated in an environment. It could be as simple as lighting.

So although I go to school and train teachers to not say: “Oh, that student’s sensitive to flourescents. Let’s turn them off,” but to support that student in requesting to turn them off, and then turning them off him or herself. You shift where the active advocacy is happening, to the person on the spectrum. So that’s what I do quite a lot in my work.

Tricia Kenney: I can see how that would be really helpful, even in the home for parents, as well. It just made me think of when one of my sons was younger and I wouldn’t know what he wanted. [Chuckles] I would never know if he was hungry or tired or hurt or what exactly he was making a fuss about, and so I would go through this huge list of things, and then I’d find out: “Oh, okay, he’s hungry.” He couldn’t tell me directly what it is that he wanted for food. I would go and open my cupboard doors and say: “Do you want cookies? Do you want crackers? Do you want a sandwich?” and he’d let me know when I touched on the correct thing. So how would you go about that at a young age for children who are nonverbal?

Valarie Paradiz: Yeah. Well, what we’re discovering in research, we’ve been piloting the Integrated Self-Advocacy Curriculum in New York City public schools for the past three years, and we’ve been adapting it also, so we’ve been able to reach every type of learner on the spectrum, as well as every form of functional communication. So, we’re working with students who are nonverbal, highly verbal, just across the board.

What we’ve discovered, we’ve spent a lot of time focusing on one particular unit of the curriculum called “Sensory Scan.” And basically what the student learns is how to go into any environment and basically methodically scan that environment for any sensory interruptions or discomforts, and it’s very structured. We have eight or nine different scan prototypes, as we call them, and each is designed for a different kind of processing or learning style. So some of the scans prompt the student or the person on the spectrum to scan for smell, for example, strictly by images—almost like PECS system, in a way.

Tricia Kenney: Umhm.

Valarie Paradiz: Another scan may be strictly in text format, for those who process better just simply by reading, and others that are a combination of both. So a student or an adult on the spectrum learns to just methodically analyze the environment, and once they’ve identified what triggers are there or discomforts, they move to the most important step in the sensory scan, which is developing an active advocacy plan. That may be making a request or an accommodation: “Can we turn the volume down?” It may involve any number to types of solutions, and that person may end up requesting it verbally or not, through any means of communication they happen to utilize. We are using it in El Paso school district in Texas for the younger ones in elementary grades.

Tricia Kenney: Oh, wow.

Valarie Paradiz: I think you can teach sensory advocacy to very young people on the spectrum. I think they are quite aware of what causes them discomfort. With this scan, you can simplify it and focus on one sense, or expand it and cover all the sense systems in a single setting. Anyway, what we’re discovering in the research is how schools quite ofen are really tracking what they call “behaviors.” I like to often call “behaviors” an ineffective form of self-advocacy.

We’ve been tracking a student’s ability to scan and advocate for sensory accommodations and sensory needs against target behaviors, and we’ve seen a trend in many, many, many students, where the behaviors decline dramatically because they’ve learned how to scan and advocate for themselves.

Tricia Kenney: Yeah. What about helping a child identify that it’s a sensory issue that is creating the behavior? If your child is just very grumpy and having a fit or whatever, and you as a parent are going: “Okay, you’re tired. I know you’re tired. You just need rest.” Or: “You’re hungry. I know you haven’t eaten. Let’s get you some food.” How do we help them make that connection beforehand, instead of just having the “behavior,” so to speak?

Valarie Paradiz: Well, the first step is to teach what the different sensory systems are. And that in and of itself is very powerful, because it brings a person on the spectrum closer to…or increases self-awareness around the senses, and “Oh, these are my experiences.” If you think about how much time is spent in early intervention and even after kindergarten and into the older elementary years, how much time is spent with our kids identifying emotions and internal states, I feel that our students need that level of practice and awareness-building around the senses, as much as they do around: “Oh, what is anger? What is happiness? What is sadness?”

Tricia Kenney: Right; right.

Valarie Paradiz: And it’s not something that a person just kind of learns quickly, but we have social skills programs that last for years. We have very intensive learning programs that incorporate speech, OT, ABA, and I really do feel that there will be a time, and it’s around the bend and it’s coming, that we’ll be incorporating self-advocacy learning in a very similar, comprehensive fashion. It will touch on advocating for sensory [needs], but I’ve identified five advocacy skill areas in my curriculum: sensory, environmental, social advocacy for your own social tendencies and needs, entitlements—knowing what IDEA is; knowing what the ADA is.

Tricia Kenney: Umhm.

Valarie Paradiz: Disclosure. When do you disclose? How do you disclose? Are you going to fully disclose and reveal the diagnosis or are you going to offer a partial disclosure and say something like: “Those lights give me a headache. Can we move to a different table?” say, when you’re at a restaurant. That’s a partial disclosure. And then another area that I include in the self-advocacy skill areas is understanding and advocating for your deep and focused interests, which is, of course, specific to autism. And knowing how to manage those interests, but also advocate for the need to engage in them in specific situations, and to do it in a way that is almost educating others about your needs.

I like to give another example of my friend, Stephen Shore. If he’s at a cocktail party or a party in someone’s home and there’s a piano there, one of his deep interests is music. So he might ask: “Is it okay if I play the piano as sort of background music and entertain people a bit?” And for him, it’s a highly organizing activity. It helps him feel more integrated, socially, because it is his deep inteest. So those are the skill areas that the curriculum teaches to.

Tricia Kenney: Yeah. That is an amazing progression for autistic people, and I can think of a million schools that would so greatly benefit from that. It seems like very many are still in the dark ages, as far as how to work with autistic children and how to make the experience a lot more relaxed and a lot more suited for learning. I think that’s where a lot of those, as you said, they call them “behaviors,” “bad behaviors” and whatever in schools that the kids get in trouble for, I think so much of that could be alleviated with all this. So how well-received has this been? I know you said you’ve been going around the country presenting. Have people been incorporating this already?

Valarie Paradiz: Yeah, in many different settings. New York Public Schools is where we’ve been doing the research. And the curriculum has now reached evidence-based status, which is really nice, because then other schools know that it’s a tool and a method that they can utilize that’s been basically tried and true.

Tricia Kenney: Right. [Unknown] I think a lot of places are just like: “Well, all we have is speech therapy and ABA,” and obviously it’s much more involved than that. That’s where I think a lot of the frustration comes in on both ends—both for the teacher and the student. So it’s nice to have this sort of research done. And was this part of the Autism Research Institute stuff, or—?

Valarie Paradiz: No. Brenda Smith-Myles has been involved in helping design the research, and though she hasn’t published on it yet because we’re still collecting data this year, that information’ll be shared soon somwehre in one of the professional journals. So that’s all very new and coming to light, which is very exciting. I’m now working with a team of people; we’re expanding the Integrated Self-Advocacy Curriculum very rapidly. Right now there’s one book out, but by the end of the year there’ll be three more print publications and three apps available to families and professionals and people on the spectrum.

And the focus is all structured activities for increasing your skill level in self-advocacy in a variety of arenas, and we’re moving more strongly into the adult services sector as well. And that’s where ARI comes in.

Tricia Kenney: Oh, okay. Go ahead with that. I was telling you earlier I really don’t know very much about ARI. If you could just tell me exactly what they do or they’re sponsored by or what their objective is.

Valarie Paradiz: Sure. ARI stands for the Autism Research Institute. It was founded in the 1960s by Dr. Bernard Rimland, who was also the co-founder in the 60s of the Autism Society of America.

Tricia Kenney: Oh, okay.

Valarie Paradiz: And yeah, and Rimland’s a very important historical figure in our autism community. He was quite a force. He passed away three years ago, and the way he saw ARI and the Autism Society of America were as two different organizations that were meant to complement one another, with ASA basically being a parent advocacy organization and ARI complementing that through research and funding research in the autism fields.

With time, Bernie&mdasha;as everyone who knew and loved him called him—really put all his focus on ARI. There’s a great amount of research in the past ten plus years funded by ARI that has had to do with diet, nutrition, a great deal of interest in the vaccine debates, and they tend to fund research projects that are promising. They are funded basically by family donations only. They do not take donations from pharmaceutical companies, for example.

Tricia Kenney: Okay, well that’s good. Yeah. [Chuckles]

Valarie Paradiz: They aren’t anti-pharma, but they are very pro-investigation of promising interventions that might be less invasive, and involving more recently specifically nutrition and diet. So they sponsor two conferences every year, and they publish several print journals. One of them is devoted entirely to publishing new research and announcing results of recent recearch in autism. They have a newsletter that’s free. You can sigh up for it on their website. And very recently—and this is extremely exciting to me—ARI has set aside funding to establish an adult self-run program at ARI. The name of that program is the Autistic Global Intitiative.

Tricia Kenney: Great.

Valarie Paradiz: And it’s comprised of thirteen adults on the spectrum. I’m directing that program, at least for the first year. We’ll probably rotate who will direcgt each year, or every two years. And basically we are provided with funding to plan for and determine our own initiatives.

Tricia Kenney: That’s just incredible. Truly, that’s incredible.

Valarie Paradiz: It’s so cool.

Tricia Kenney: Yeah, right. I don’t know anyone else doing anything even cliose to that.

Valarie Paradiz: No. Yeah. I think it’s been very hard for national level organizations to know how to integrate people on the spectrum into their programming. I think quite often we serve on advisory committees, and we’re asked to do presentations at conferences, but often it really doesn’t go beyond that.

Tricia Kenney: Yeah.

Valarie Paradiz: And there are so many of us on the spectrum working in the fields or who have other talents to contribute. Though in this particular group, AGI, as it’s called, we have an MD who’s on the spectrum. We have a visual artist who works with us in graphic design for all of our brochures and things and logo. We have a person who’s an MSW; we have another person who works in the Voc Rehab sector. And we have others in the group who are emerging, newly diagnosed, who we’re also mentoring as we move through our projects together.

Tricia Kenney: Oh, okay.

Valarie Paradiz: So it’s a very lovely thing. We provide in-house consulting and advisory to ARI, and we also provide consulting services to other national organizations and schools and agencies. So it’s really emerging like a small alliance of people on the spectrum who can provide consulting services.

Tricia Kenney: That is just incredible news. I am just floored. I’m so happy to hear that.

Valarie Paradiz: Yeah.

Tricia Kenney: The struggle that we’ve had for so long to try and have a voice, and that’s just wonderful. I’m so happy to hear that. Thank you for sharing that with me and with our listeners. It’s really incredible. I hope it just continues to grow and has huge success.

Valarie Paradiz: Yeah.

Tricia Kenney: It’s such an important step in our venture into society and becoming a part of our own destiny.

Valarie Paradiz: Yeah. And our focus is adults and adult services, so in year one, the first thing we’re doing is collectively writing an adult services comprehensive training series. And because we all come from different professional fields within the autism community and are on the spectrum ourselves, and in a variety of ways have endured a number of challenges across the board—some of us have lived in group homes; some of us have experienced long-term unemployment, due to mental illness like depression or other obstacles. And so having moved through those challenges…in fact, the very person who works in Voc Rehab was denied services by Voc Rehab [Laughter] years ago, when she first applied. So we know from the inside where maybe current training methods are missing the point.

Tricia Kenney: Yeah.

Valarie Paradiz: And we’re not tooting our horn like we know better, but we are offering something I think that is quite groundbreaking.

Tricia Kenney: It is. Because it’s really sad when somebody wants to be employed and feels like they can have that kind of life like anybody else, and they go to places like Voc Rehab and they’re told: “Well, we can teach you how to make birdhouses or fold boxes” or very task-oriented stuff like that. They don’t expand further past that to really tap into the person’s potential.

Valarie Paradiz: Yes; yes. The employment options and the way people with autism and developmental disabilities in general are presented with employment, development and options are extremely limited. And it does not support a person on the spectrum in understanding that there’s such a breadth of options out there. If you’re offered three choices, then you know three things. And most people grow up understanding that there are quite a few options and directions.

Tricia Kenney: Right.

Valarie Paradiz: We have lots of philosophical discussions about that particualr point—specifically that point. And that’s soemthing we will be embedding in the trainings for adult service providers.

Tricia Kenney: That’s wonderful. Now, you said that you deal a lot with nutrition. You personally went through some issues physically. Do you have allergies, or was it just GI problems? What was going on with you, and how did your diet change all of that?

Valarie Paradiz: Yeah. Well, I think my exposure to ARI through my husband Steve Edelson, he’s the director of ARI….

Tricia Kenney: That would help. [Laughter]

Valarie Paradiz: We just got married last May.

Tricia Kenney: Congratulations.

Valarie Paradiz: Thank you. It truly is a match made in Heaven. I’m just completely in love with this wonderful man, and he’s a wonderful person in our community. He was Bernard Rimland’s protégé, basically, and took over the Institute after Dr. Rimland passed away, and really just being around Steve and going to ARI conferences and participating in some of the research presentations or just visiting those presentations at the conferences were extremely helpful to me. I did a lot of different types of what I call “proactive activities” after my diagnosis. Most of them were sensory-based things to just improve my day-to-day quality of life.

But once I met Steve, I began experimenting with diet and learned a lot at the conferences and have removed gluten from my diet altogether. I no longer have GI challenges, which really, I’ve had lifelong, and very debilitating at times and severe. My insomnia challenges have also changed dramatically. I still struggle with it, not with the severity I’ve had in the past, and I do attribute that to the change in my diet.

Tricia Kenney: So the gluten was affecting your sleep patterns? Was this affecting your stomach and all that?

Valarie Paradiz: Umhm. My digestion. Mmhm.

Tricia Kenney: I know a lot of people talk abou the GFCF diet, and I don’t know. I see a lot of things that I didn’t realize initially. For some reason, I don’t always pay attention to things [Chuckles], and my mother had problems with dairy. I’ve always had problems with dairy. But when my son was young and suffering and having terrible pains and not being able to sleep and all this other stuff, I could for the life of me figure out what was wrong, as I’m giving him hi milk every night. [Chuckles]

Valarie Paradiz: Right. [Laughter]

Tricia Kenney: [Laughter] And the poor guy suffered four years of misery, because I wasn’t able to figure it out. Doctors, of course, don’t want to run a lot of expensive tests and this and that. And then finally, I kept hearing about the GF/CF diet, and I’m like: “All right. I don’t know how to do the GF part, but I can do the CF part.” [Laughter] I eliminated milk and he was fine. He wasn’t thrashing around and screaming, and he wasn’t waking up every night screaming. I’m like: “God! That was so easy! Why didn’t anybody just tell me that was it?”

Valarie Paradiz: Umhm. Umhm. Yeah, right.

Tricia Kenney: I think if we look at ourselves and look at maybe our family around us—our parents and so on—and look at maybe some issues they’ve had, it might clue us in a little bit better as to what’s going on. I have been trying to do the gluten-free stuff with my family, but it’s really difficult. I cave in so often, and I know just doing it partially probably doesn’t solve a lot. I feel a little bit better about it. I’m like: “Well, at least we’re trying a little bit.” But is it completely gluten-free before you see any difference?

Valarie Paradiz: Theoretically, yes, but I’m just the wrong person to ask.

[Laughter]

Everything I’m sharing with you is just my own personal reaction to the changes that I made that were beneficial. One of the things I encourage for families who are interested in knowing more is to go to one of the ARI conferences, because you just learn so much about nutrition there, and you can speak to other people attending and get ideas for how to make this functionally work in our home. There’s such a wonderful network out there. But I don’t claim to know very much at all about the research. The cool thing, too, is that those conferences, they have a whole nutritionist training track that they do as well for nutritionists in the field.

Tricia Kenney: Oh.

Valarie Paradiz: Yeah, yeah.

Tricia Kenney: Yeah. Because it’s so hard finding stuff that the kids will eat. We could buy the gluten-free bread and the kids are just like, “Eugh.” They won’t even touch it. It’s like: Okay. Do we just eliminate sandwiches completely? [Chuckles]

Valarie Paradiz: You’re right; yeah. I basically don’t eat sandwiches, but I do eat a lot of really great gluten-free pasta. I’ve found wonderful gluten-free pancake mixes that I love. They don’t taste icky. But there are a lot of solutions: rice cakes. [Laughter]

But one thing I wanted to add is at the ARI conference that’s coming up in late April, that’ll be held in Atlanta. They’ll be running their usual conference there with training for clinicians, doctors, and training for nutritionists and seminars and workshops for families. And ARI’s also adding a new track that is designed and basically staffed…not staffed, but, by AGI, the Autistic Global Initiative, the adults’ group.

It’s a track that’s devoted entirely to adult services. It’s not a track that’s for people on the spectrum; it’s for anyone involved in adult services and a adult life, whether you’re a provider, a parent, a person on the spectrum. Quite often, at the conferences, if you call something an “adults track,” people think: “Oh, that’s where all the autistic people go.” And we are very, very committed to making it an integrated track. The presenters there, some are people on the spectrum, but some are people working in the fields. Dennis Debbaudt will be speaking about legal issues and encounters with officers and the police, and how can adults prepare for that, or how can you support an adult in understanding the issues around interactions with the law, or even getting arrested—those kinds of things.

Sherry Moyer will be there. She’s the woman who wrote the ECLIPSE Model,
which is an amazing curriculum. It’s not social skills; it’s not sensory; it’s not executive function. It’s everything rolled into one book, and it’s so effective. She’ll be speaking about transition. There’ll actually be a panel on diet and adult life on on the spectrum. That’ll be multidisciplinary. So that’s very exciting—they’re launching that this year.

Tricia Kenney: Wow. It sounds really great. Now, when we talk about adult relationships and so on and so forth, I wanted to get into a little bit of your personal story. I know that you said that you just got married and you’re in this great relationship now: how is it differing from when you were younger, before you got diagnosed? What are the differences in how you approach relationships now?

Valarie Paradiz: Well, now that I’m diagnosed and have learned more about how to address my sensory challenges in a way that is supportive and ongoing. I know I need to spend a lot of time doing physical activity to remain self-regulated and not become dysregulated. I know that the gluten-free diet helps with that as well. But what also is huge is being able to advocate for that within my marriage. For many, many years I just either wasn’t self-aware enough about my sensory sensitivities, particularly in intimate situations, which is a biggie for many of us on the spectrum. I was either misread as cold, not wanting connection, all those clichés about people on the spectrum that you hear: setached, not really wanting to be in a relationship. I would get myself into very challenging situations in my intimate life, where I might get involved in a relationship but then not have the tools or ability to talk about my sensory differences literally between the sheets. [Chuckles]

Tricia Kenney: Yeah. [Chuckles]

Valarie Paradiz: And what would happen would be this recurring pattern, where I’d get involved in a relationship. I’d feel tremendous warmth and love toward someone, and then there would be this gradual deterioration of the connection, because of my sensory differences that I wasn’t able to just clearly speak about. And then once I learned how to do that, it was also about: “Well, I can’t also be in a relationship where someone doesn’t accept that.”

Tricia Kenney: Yeah.

Valarie Paradiz: Where someone gets angry or even abusive because I have these differences, because it’s not somehow satisfying for them. Which is understandable, but at the same time, to resort to abuse, which happened in my life and happens in many Aspie women’s lives, is also not a strategy from someone who you’re feeling close to and connected with, and maybe sharing a life with.

So I think the thing that is so wonderful for me right now is I have a partner who understands all the sensory [issues] very, very well. He’s not on the spectrum, but he knows many people on the spectrum; he’s spent his life devoted to autism and helping move the various fields forward in our understanding of it. It’s such a huge difference in my life, and I don’t have to…Really, literally in the past I would try to force myself to endure sensory experiences sexually and intimately that were really, really just disorganizing for me. One shouldn’t have to do that in any aspect of life to have a stable, loving, mutual relationship. I just don’t need to do that, or I don’t think of that as an option in my marriage. It’s not something I feel I need to do to save the marriage.

Tricia Kenney: Right.

Valarie Paradiz: I hope I’m not getting too personal.

Tricia Kenney: No. I think a lot of people have such a hard time being able to express that—you said you clearly did, too—because it’s such an intimate moment. And as women, it’s very hard to step out of that role and talk, even. [Chuckles]

Valarie Paradiz: Yeah. To verbalize it, or in some other way communicate it is very, very hard. And it’s so risky.

Tricia Kenney: Yeah; yeah. And it’s just…I don’t know if maybe it’s my age or my upbringing or what, but that’s a very private sort of thing. It’s not like it is in the movies. [Chuckles]

Valarie Paradiz: That’s right. And I tend to speak about it when I can, or when the question comes up, because I often think about: Are there other women out there on the spectrum listening who need to hear their own experience?

Tricia Kenney: Umhm. And, yeah, to have that freedom to be able to actually have a conversation about it, I think that would be an incredible class to have [Chuckles] for women on the spectrum. I think so many of us from youth on, we’re just these incredibly shy type people, and we’re probably labelled that from teachers and friends and whatnot. So I think that would be an important self-advocacy class to have.

Valarie Paradiz: Yes. Several years ago, I sat on a panel at the Autism Society national conference, and it was a Women on the Spectrum panel. I think there were five or six of us on it: Dena Gassner, who’s on the spectrum and is a good friend, organized it and we were all shocked—as was the audience—that every single person on that panel had experienced some form of sexual or physical abuse.

Tricia Kenney: Yeah. I don’t know a single autistic woman who hasn’t.

Valarie Paradiz: Yeah, so it’s an important topic. I’d love to just throw in there, too, that Dr. Sherry Moyer at the University of Ohio-Toledo, which is the Center for Excellence in Autism, is just now launching a research project on women, autism and sexuality, I think with the American Medical Association. That, I hope, will shed some more light in terms of research on what our experience is.

Tricia Kenney: Umhm. Yeah, I think it’s been really eye-opening for me, being in touch with the women that I have, just through AWN, and it’s just uncanny the similarities in experiences that we’ve gone through. It’s like: Okay, is it just because the numbers are high for women, period? Or is there something that we’re doing or not doing or not recognizing that leads us into these situations? And a lot of people attribute it to just being very naïve, but I don’t know if that’s always the answer. I know some autistic women who are just not naïve, who are all out there, [Chuckles] and that still happens, too. So I think that’s a really good avenue to research.

Valarie Paradiz: Yeah.

Tricia Kenney: I’m really looking forward to that. I’m sure it’ll be a while before we see anything from it, but, yeah, I think that’s really good that they’re doing that.

Valarie Paradiz: Yeah. An appropriate topic for Valentine’s Day. [Laughter]

Tricia Kenney: Yeah. [Laughter] Yep. Well, some of us are in decent relationships. I’m in one now, and I’m pretty happy with him, most days. I think it helps that…I don’t know if he would be formally diagnosed or nor, but he has his quirks. I think we really meet on a level that assists us in our relationship. He has an autistic son, too, and I have my two autistic sons. And there’s ADHD everywhere.

[Laughter]

So I think it works for us. [Laughter]

Valarie Paradiz: ADHD flying around the room, around the house.

Tricia Kenney: Right. [Laughter] Yeah, it’s a mess. [Laughter] But it’s hard to come across that particular situation in life, and I’ve had many bad relationships. [Laughter] So I see where a lot of problems were before, and it’s hard not to repeat them, but you try. And I think getting involved with work like you’re doing would be really beneficial for any of us who are striving to be in a relationship, to really get to know ourselves better, and our own inner workings, so that we can affect how we are to the rest of the world.

Valarie Paradiz: Yeah; yeah.

Tricia Kenney: Okay, well, we are about ten seconds away from being cut off, so I wanted to thank you so much.

Valarie Paradiz: Thank you so much.

Tricia Kenney: I really appreciate you being here. [You have really good information?]. Do you have a website where people can get in touch with you.

Valarie Paradiz: Yes. autismselfadvocacy.com Yeah.

Tricia Kenney: Okay, great. Well, thank you again so much, Valerie, and happy Valentine’s Day. You take care now.

Valarie Paradiz: [Chuckles] You, too. Thank you.

Tricia Kenney: All right. Sure. Bye-bye.

[Valerie hangs up]

Okay. That was Valerie Paradiz, and she had just tons of really good information. I do appreciate her being here and sharing that with us, and looking forward to all the great work that ARI is doing. Just really great, great stuff today. I hope you will be able to join us next Monday at 11:00 AM Eastern Standard Time, and we will be discussing iPads for autism. All right. Take care now, and happy Valentines’ Day, again. Bye-bye.

[End]

[Music]

Sharon daVanport: Greetings, everyone, and welcome to AWN radio. We are the Autism Women’s Network on Blogtalk. I am your host, Sharon daVanport, and we are streaming to you live from the very cold and wintry Midwest, USA. Today is Monday, February 7. In just a few minutes, our guest Camilla Connolly will be joining us all the way from Australia, where it is already Tuesday afternoon, February 8.

Tricia Kenney: [Chuckles]

Sharon daVanport: First, I’d like to welcome co-host, Tricia Kenney. Welcome, Tricia.

Tricia Kenney: Hi, Sharon; how are you?

Sharon daVanport: I’m well. How are you doing, Tricia?

Tricia Kenney: I’m really good. I’m glad to be back from our little hiatus. We had a little downtime in January, and so now we’re back and we’re giving you the show through five feet of snow. [Laughter]

Sharon daVanport: I think you guys actually got a little bit more than we did.

Tricia Kenney: We really did. We really got slammed this past week. It was pretty exciting. The kids are loving it. [Laughter]

Sharon daVanport: Right. [Laughter] And I was speaking with Camilla on the phone the other day, and she’ll tell us a little bit about this when she comes on in a few minutes. But Camilla in Australia, they’re enjoying their summer right now, so it’s so strange to talk to somebody who’s enjoying the sunshine and the hot weather, and I’m sitting here freezing to death.

[Laughter]

So it’s neat to be able to talk to people like this and bring people on to the radio show from clear across the world.

Tricia Kenney: It’s very exciting. And I know that it’s just been a very busy month for all of us, but we do plan on getting back on track this month and starting our show up again every week, so you can look forward to that in February.

Sharon daVanport: That’s right. And just to let everyone know before we bring Camilla on, next week on the 14th, we’ll be back on our regularly scheduled time. We will actually do our show in between 10:00 and noon Central Standard Time, and Valerie Paradiz will be our guest. She is Director of Special Projects at the Autism Research Institute, and it’s going to be a little bit about relationships and how she successfully found a relationship and learned to tap into her strengths as a female on the autism spectrum, so it’ll be nice to have Valerie on next week for Valentine’s Day.

Tricia Kenney: Okay. I guess we’ll go ahead and bring on Camilla now, and she’s going to share with us her story and some really good tips for autistic women out there and parents. So welcome to the show, Camilla.

Camilla Connolly: Oh, thank you so much, Tricia. That’s just wonderful to be on radio all the way from Australia [unknown] in the States, and it’s absolutely wonderful to be just a part of the Autism Women’s Network, which is an incredible, incredible organization, with so much influence and so much positivity for women on the spectrum.

Sharon daVanport: Oh, thank you, Camilla. We’re just so happy for you to join us today.

Camilla Connolly: Thank you, Sharon. It’s great to finally speak with you.

Sharon daVanport: I know. [Laughter]

Camilla Connolly: It’s a thrill to hear your accent.

Sharon daVanport: I do have a little bit of an accent there. [Laughter] Well, I like the Australian accent, as well. I enjoy always speaking with Katharine Annear on the phone. She has a very lovely accent.

Tricia Kenney: I know. Their voices are all so pretty and light and the accent is just like, “Oh, that’s beautiful!” [Laughter]

Sharon daVanport: It really is; it really is. Wow.

Camilla Connolly: I think it’s just the novelty of it being different.

Sharon daVanport: I think you’re right, Camilla. [Laughter] Well, you know, Camilla, one thing I just so much love about having you on today is just the positive slant that you seem to bring to everything that you do, everything that you touch in the autism community. And speaking and encouraging others and talking about the importance of peer supports. I’d first like you to start out by talking to our audience and explaining how you came about getting your diagnosis.

Camilla Connolly: Oh, yes. What a journey. Well, I was formally diagnosed a couple of years ago. I had had an extremely difficult childhood and an extremely difficult adult life, up until the age of about 36. I had always been a little bit quirky as a child. I don’t think I would be on the severe end of the spectrum. I think that even though I’m a chronic monologuer and [unknown] a bit eccentric, I think I would be placed somewhere on the milder end, in some respects, with some severe sensory issues.

But what happened to me a couple of years ago, or a few years ago, was that a memeber of our family who was an infant began to show some rather unusual and novel behaviors. We started to piece together that it looks like autism. And that led, as it does in so many families and in so many cases to an exploration to an exploration of what autism actually is and was and its variant manifestations in men and women.

And it began for me to be a journey of self-discovery, where a number of things that had remained unexplained throughout my life and in my childhood suddenly became very clearly explained. And it’s been a very, very difficult process, coming to a point of acceptance around the fact that I am on the spectrum, and that with that comes a variety of challenges and a variety of gifts and wonders. But it’s a big journey.

Sharon daVanport: Right.

Camilla Connolly: I was formally diagnosed by one of Tony Attwood’s colleagues, a guy called Stephen Underwood. That was a couple of years ago now. And there was a great period—I think I’m just coming out of it now—a great period of chronic depression with that diagnosis, a lot of regret and a lot of, when we’re late-life diagnosed, this sense of “Why didn’t I know earlier? Why didn’t I know in childhood? Why wasn’t I able to be one of the lucky ones who found out earlier?”

Sharon daVanport: Right.

Camilla Connolly: At the same time, I’m really grateful for how things have panned out. My life has been a very difficult one and it’s become good the past decade, I suppose, but my experiences have given me a lot of compassion for the underdog, a lot of compassion for people who are a little bit different. And I feel incredibly grateful for that, and that’s something I often see in we women on the spectrum. It’s a wonderful quality that we have.

Sharon daVanport: Right. You talk about your depression. Can you speak a little bit about why it was that you personally became depressed with the diagnosis?

Camilla Connolly: I think that as a woman in this era, in this age—I’m 48—as a woman of this time, we’ve kind of grown up in an era where there’s been an assumption that we can almost change anything or do anything if we just work hard enough on ourselves. It’s been a great new age of therapies and opening up of people’s consciousness since the 1960s. And so I’m a child of the 1960s, so grew into my later life in the ’70s, ’80s and ’90s, and now the 2000s. And I had a terrible substance abuse problem in my early adulthood, and now I know that I was trying to medicate my Asperger’s. And I couldn’t fit in, and I was just wracked with pain because I couldn’t fit in to the social groups like other women did.

What happened, though, was that when I was diagnosed, it became very apparent to me that not everything can be fixed—that there were certain things about me that remain difficult, and there are certain ways of viewing and seeing the world that are slightly different from my female neurotypical counterparts, and it sets me aside a little bit. And I thought that if I just worked hard enough I’d be like other people, or like other women. If I just did this, I’d be able to go and talk like they did. If I just did that, I’d be all right.

And with a diagnosis, there was the realization that while I’ve learned a lot of skills along the way, and I know many of us in adult life have, there is still this inner core in me that is markedly different from all the neurotypical women that I’ve come across. And the women that I relate to most fervently and strongly are other women on the spectrum who seem to enjoy the kind of intense raves that we all get into. The neurotypical women just have a little bit more lightness about them; a little less intensity; a little more flexibility; a little bit more dynamism. And all those things are great and I’ve developed some of them, but we’re just a little bit different. So I got very depressed about the diagnosis, and I think I’m just really coming good now.

Sharon daVanport: Right.

Camilla Connolly: I still try to be positive, though.

Sharon daVanport: Well, you seem to be.

Tricia Kenney: In your bio, you mention that along your journey you had been diagnosed with other things prior to the autism diagnosis. I was wondering: what are some of those things that were misdiagnosed when you were younger?

Camilla Connolly: My history’s quite a complex one, and I think that there’s probably Asperger’s and also post-traumatic stress disorder, which I’ll talk about later in relation to victimization and being abused, which is very common amongst women on the spectrum. I think that’s quite correct. So I’ve had to do healing from that.

But I’d been misdiagnosed with borderline personality disorder, which is just ridiculous when you know me, because I have maintained some relationships with people throughout the course of my life. I’ve been misdiagnosed with dissociative identity disorder. Multiple personality disorder was another misdiagnosis that I found quite offensive, actually.

And then there were isolated and correct diagnoses where I was hospitalized in a psychiatric unit for acute depressive episodes, and that’s very much a co-morbid that I think many women on the spectrum experience, along with that heightened anxiety because of our slightly different brain structure. But the depression is accentuated, I think, by some of the life difficulties we run into as young women on the spectrum. We do get depressed because we are a little bit different. We don’t fit the group; we do get bullied. We do have a hard time.

Sharon daVanport: Yes, very true. So let’s talk a little bit now, Camilla, about the work you do. I just love how you speak to this, and on your webpage, too, and I want to make for sure that we get that posted too during the show. But let’s talk a little bit now about how we can help women and girls positively, and for them to be productive, to be the best of who they are.

Camilla Connolly: I am not an advocate of women and girls on the spectrum siting in their rooms with no connection with anyone other than a computer. I personally believe that we have extremely static brains that loop in on themselves, and the beauty of that, if it’s harnessed correctly, is that we can have amazing skills and talents and amazing perseverance in whatever we do. The downside of that is that we can loop in on ourselves, and the autism or the Asperger’s can become a trap for us, and it can become kind of like a cage.

One of the things that I’m really interested in doing is helping women to become really adept at harnessing that energy, that looping energy. We put it into our special interests, but at the same time, we reach out into the world and we find a peer support network of older women on the spectrum, of girls the same age, of younger women. But we find a peer support network where we are really able to communicate with one another, and that forms a foundation or a platform upon which we can go out into the world strong in ourselves, equal to others, and able to hold our own in the world at large. Knowing that we’re a bit different, but also knowing: “Hey, it doesn’t matter, and I have the self-esteem to move forward in my life and to achieve things that really mean something to me and to other people.” And I think that we are human beings, and we are social creatures. I’m such a fan of Temple Grandin and what her mother did.

Sharon daVanport: Right.

Camilla Connolly: Her mother pulled her out of herself without taking away the autism. Her mother encouraged her to be brilliant and what she was brilliant at, but also encouraged her to build a life, and she did that with early intervention strategies and I am not a fan of ABA. [Laughter] But I am a fan of helping young girls and young women find friendship and connection with other girls on the spectrum, and then hopefully with some other compassionate NT women and girls. Because there are good NT women and there are good Aspie women, and there are bad Aspie women and there are bad NT women.

Sharon daVanport: Right.

Camilla Connolly: I just think the group is so important for us, but it’s very, very hard. But if we can be supported through that. Rachel Harris, who’s a counselor over here with Asperger’s in Australia in Brisbane, and I have set up a face-to-face group, which basically helps women to come together, not unlike what you’re doing in the States with the Autism Women’s Network.

Sharon daVanport: Right.

Camilla Connolly: It’s so essential. It’s so valuable. And just the joy that the women on the spectrum get from talking with each other and identifying.

Sharon daVanport: Right. Now, the group that you and Rachel set up, you’ve just had your second meeting, is that correct? And Tony Attwood spoke there?

Camilla Connolly: He’s just a gem. He’s just a caring gem. He gives his time to the group for free. He’s coming back later in the year to talk with women and girls on the spectrum again. He talked about strategies; he talked to some of the Aspie mothers about what they could do to help their children at school; he gave some pointers to teachers. He’s just a mine of information, I think, and it was a wonderful[ meeting [unknown]. Yeah, it’s really pretty powerful.

Sharon daVanport: Wow. And I read some notes from one of our AWN members, Norah, who I guess she attended the meeting there, and she posted some notes from the meeting. It seems like it was just a wonderful second meeting. You guys are just really kicking off with a big start over there. That’s just awesome, Camilla.

Camilla Connolly: Thank you. It’s wonderful, and every woman on the spectrum, whether they’re more pronounced in their presentation or older and less severe, every woman on the spectrum is welcome. We have to construct it so there’s a few guidelines. We have to watch the monologuers.

[Laughter]

We have to time things. Some of us are a little bit dominating; I tend to be like that, so we need to pull back a bit and we need to let the quieter ones have an opportunity to share. But it’s all gone beautifully. It’s just wonderful. Wonderful.

Sharon daVanport: You’ve got that peer support going on, then, right there.

Camilla Connolly: We do, yeah.

Sharon daVanport: That’s so nice. I know we were going to touch a little bit on how we should be very careful of who we surround ourselves with. There are different kinds of behaviors we need to really be conscious of. So why don’t you speak a little to that right now?

Camilla Connolly: Very much so. I do know that even at 48 years of age, I have a tendency towards social naivete. That was more pronounced when I was younger. And what happened when I was younger was that over and over again, I was probably victimized by men and women over and over again. Bullying in my [unknown] at school, and then it continued on into part of traumatic abuse situations and things later and life [from?] men and women, where my capacity to read the social nuances and the savvy manipulations of people who maybe aren’t that savory is somewhat impaired. I’m not very good at it.

And I have a history of being highly intelligent, highly articulate, typical Aspie woman monologuer. I’m able to talk, and yet when you get me in the flow of the social group dynamics, I don’t read people very well because I’m quite overwhelmed. And so over and over again throughout my life, I’ve had these episodes where I have been done over by people, and I think that with this peer support idea, Liane Holliday-Willey talks about it. Tony Attwood talks about it. I’ve heard you talk about it in some of the other Blogtalk interviews, where it’s really important to run over with other people or to check with other people who we let into our lives, and to actually get in inkling or an understanding of what abusive behavior actually is.

Sharon daVanport: Right.

Camilla Connolly: How often is someone e-mailing me? Are they demanding of me? Are they respecting in their communications, or are they bombarding me with…you know, all this kind of stuff. And sometimes because we’re Aspie women, we don’t read it very well, and we’re also sometimes so lonely and so desperate for friendship that we’ll take whatever comes our way.

Sharon daVanport: Right.

Camilla Connolly: You know what I mean? It’s that low esteem that some of us have. I’ve certainly had that in life, and we need to just be very careful. We need help sometimes with monitoring what healthy behavior is from a friend or from a potential friend, whether they’re male or female. I think we’ve just made ourselves open to it over and over again. Particularly the women and girls conferences out here, where Tony Attwood and Dr. Michelle Garnett from Minds and Hearts Clinic have talked, and I’ve talked, and Rachel Harris has talked, and Katharine Annear has talked, because she does wonderful work down in South Australia, helping women with all this kind of thing.

You know, there really is this need for us to, rather than taking people on their word and taking people literally and taking them on face value, we really need to just watch and study people very carefully before we let them in. I think this is a really, really wise kind of approach to develop for women and girls on the spectrum.

Sharon daVanport: Very true. And I know that you mentioned Liane Holliday-Willey. I know Liane has mentioned this on our show before. She mentioned this in her first book, Pretending to be Normal, how she actually turns to her support network that she has set up personally, of people who advise her on different people that she’s thinking about bringing into her life—a new friend she might have made. And she said that that has done wonders, and I know that this past year, I’ve kind of set that up myself, and it really works, Camilla. It works wonderfully. Trish and I talked about that, and how it’s so important. Tricia, do you remember that conversation we had for about an hour long? We were going through all these different things we were trying to dissect, and we realized how important it was that we set something like that up.

Tricia Kenney: Well, for me personally, I know that I just have been on a run lately of befriending people that are really out there and abusive and whatever. And I’m like: “What is wrong with me lately?” I can’t seem to befriend anybody who’s on this planet. [Laughter]

Sharon daVanport: Aw, Tricia.

Tricia Kenney: And so I have zero self-confidence in that realm right now. So every time I talk to someone, I’m very leery of it now. Do I carry on a conversation with this person or do I not? What if they turn out to be crazy, too? [Laughter]

Sharon daVanport: Aw.

Camilla Connolly: I think that’s such a good point, though, because I’d kinda call that the Aspie wound.

Sharon daVanport: Right, yeah.

Camilla Connolly: It’s almost like a wound that we carry.

Sharon daVanport: It is.

Camilla Connolly: Because all of us on the spectrum have had so many examples of this, or so many run-ins with this kind of stuff, by the time we’re in our forties and fifties, some of us are so isolated and so bruised, it’s like: “Oh, can I bother to try again?”

Sharon daVanport: Right.

Camilla Connolly: But if we can get that common support or peer support, like, say, Tricia and Sharon can e-mail or phone each other and talk about: “Okay, well, theree’s this person. They’re doing this. Does this sound healthy?” and your peer support network might say: “No, that doesn’t sound healthy,” and you say: “Oh, okay. Well, I wasn’t really aware that that was that out there.” Sometimes we realize six months down the track that it’s out there, and the damage has been done.

Sharon daVanport: Right.

Camilla Connolly: So it’s about using that peer support network to get in earlier, and particularly when there are male perpetrators as well, where there may be really serious physical or sexual abuse as well, the earlier we can get in, the better.

Sharon daVanport: Right. I have not come across a female on the spectrum that has not experienced some form of what we’ve just talked about. I haven’t personally spoken with anyone who hasn’t, so I think to some degree, just as humans we’re all touched by some negativity. But when you think of how vulnerable we can really be because of that naïveté that we have, it becomes a bit frightening.

Tricia was not exaggerating when she says that she has zero confidence, Camilla. She has really had a rough time over this past six months about some friendships that she was trying to form that really just went south, so to speak, really fast, and just really left her rattled. I don’t want to speak for you, Tricia, but I know from the conversations we’ve had and some of the fallout that we both saw from some of this, it was really frightening…frightening behaviors that we saw.

Tricia Kenney: Well, plus, the way I was raised, manners are so extremely important. So I try to do things gracefully and kindly, and I don’t quite know where to stop being super nice about how to end things. How to end a relationship with another person and actually end it. [Laughter]

Camilla Connolly: I know exactly what you’re talking about. I had a stoop with all this. It got bad again the past couple years when I was diagnosed, but prior to that, I was actually doing quite well with it. I think because of our all-or-nothingness, as women on the spectrum, as spectrumites, we also may have a naïve assumption about what friendship is. So, for instance, for me, I have to regularly check myself whenever I’m around people. My basic tenets about what friendhsip is—and it’s been the past few years that I’ve learned this isn’t the case, at about 45. And I slip into this virtually on a daily basis. If someone is nice to me, I think they are a friend. If they smile at me, I think they are a friend.

Sharon daVanport: Right.

Camilla Connolly: Now, as articulate as I am, there is a great deficit in me in that respect. That is my default position: If someone is nice to me, they must be a friend. Now, as I mature and as I find out more about my personal Asperger’s presentation, I now know that that level of naïveté that exists within me, in terms of friendship and my take on it or my perception of it is very much in keeping with my traits of social naïveté. So I need to really rethink: What is a friend? A friend develops over time. A friend doesn’t develop after a smile and a chat down in the main street of the city.

Sharon daVanport: Right.

Camilla Connolly: Or the town I live in. And that’s all new to me, this idea of there being grades of relating with people. There are rings or grades of relating, and we start off with the light and we move into the deeper. Aspies tend to have one channel, which is: “go straight into the deep.”

Sharon daVanport: [Laughter] That’s so true. We do.

Camilla Connolly: Go straight into the deep. The perpetrators come in and they pick us as the intense, naïve ones and we are taken off on tangents that are incredibly destructive. So the key is to have the guards up; to learn how to have the guards up; to have that support network of other women and maybe a therapist, where who you let in you run it over people, just as Liane has described in her wonderful writing. I think she’s so spot-on with that. I think it’s just so important.

Sharon daVanport: Right. Very true.

Camilla Connolly: And in saying that, I think even in the autism community, we need to be very, very careful as well, because there are many, many wonderful people in our community, but there are also people who have other issues, who have dual diagnoses or co-morbids that are out of control and needing treatment. They may not be receiving adequate treatment. So we just need to be…I suppose the phrase is “eternally vigilant,” without being our own policewomen. Do you know what I mean?

Tricia Kenney: Right.

Sharon daVanport: Be mindful, yes, of these things.

Tricia Kenney: It’s where you don’t want to be paranoid [Laughter].

Sharon daVanport: Like Tricia is right now? [Laughter]

Camilla Connolly: I think when the paranoid comes up for me, because I can get like that as well, one of the things that I do that’s really important to counter the paranoia, and it’s a little bit hard in [unknown]. No, I will grant you [unkown]. I exercise a lot. I exercise a lot and I meditate.

Sharon daVanport: Oh, that’s nice. Right.

Camilla Connolly: I’m a real advocate of meditation for people on the spectrum. Meditation, relaxation and exercise are so important to us, and they help to integrate our frontal lobes a little bit more so that we’re not so locked into our anxieties. The other thing that’s a really, really great technique to use if we are going into the paranoia around people because of having been burned metaphorically so many times, one of the things that we can do also is just call up or write down those examples of where friendship has worked. What are the qualities? How has the give and take been in those friendships? Give ourselves wonderful examples and draw on those as our strengths.

Sharon daVanport: Oh, that’s a lovely idea. Very nice.

Camilla Connolly: Templates for future friendships. I have a little bit of an invisible sticky in my head that says: “Come and do me over.”

Sharon daVanport: Okay. [Laughter]

Tricia Kenney: [Laughter]

Sharon daVanport: So that’s the little sticky your carry around in your head, your little sticky note? [Laughter]

Camilla Connolly: Yeah, that I have to constantly be aware of. I’m a target. I’m a bit of a target.

Sharon daVanport: Right. But knowledge and just being aware is just half the battle right there. Just being aware of that. And [sometimes?] just embracing our vulnerability. Not to the point, like you said, that we become overly rigid, but there’s nothing like being careful. So I think this is a good conversation to have. It’s very important.

Tricia Kenney: Right, because there is that line, and I think a lot of people are probably pretty unsure where exactly it is, between being vigilant and careful and just avoiding the situation altogether.

Camilla Connolly: That’s right. There’s a fantastic book by Temple Grandin and Sean Barron, and it’s called The Unwritten Rules of Social Relationships. It’s published over in your country.

Tricia Kenney: Future Horizons, I think.

Camilla Connolly: It’s published by Future Horizons. But both Sean and Temple Grandin, they have very different autistic presentations. They were both far more profoundly autistic than I was as a child. But what they do is, they talk about their presentations, but they also talk about how they have overcome certain difficulties and how they have used resilience and persistence, and how they’ve made friends. It’s been a really good book for me and for other people I know. The other books that’s really good about some of that stuff about women on the spectrum is Rudy’s book, Aspergirls.

Sharon daVanport: Oh, yeah. Absolutely.

Tricia Kenney: Rudy was just great to have on the show, too. She was just so sweet.

Camilla Connolly: Fantastic woman. What another inspiring Aspie woman, isn’t she?

Sharon daVanport: Absolutely, yes.

Tricia Kenney: Could you tell us a little bit more about some of the therapeutic ways you cope with things that are going on in your life and the struggles that you have?

Camilla Connolly: Sure. As I said earlier, one of the things about having an Asperger’s mind or Asperger’s brain that is wonderful and also debilitating is the routine and repetitive behavior, or the routine and repetitive ways of thinking. I use that to my advantage in my work, so when I write or when I paint, I’m able to harness that in a very productive way. However, when it comes to me stepping out into the world and trying to socialize with others, that routine, repetitive stuff can be quite difficult for other people, and then difficult for me because it leaves me feeling as if I’m at odds with other people.

One of the things that I think has really, really helped me is just having a spiritual foundation to my life. By that I don’t mean religion. I mean having an approach to my sense of well-being as a human being that entails relaxation, exercise and meditation. So I meditate every day. I’m really, really interested in the recent research over the past few years into neuroplaticity. And I’m really interested in how meditation actually helps the frontal lobes develop more integration.

I know it’s a little bit different for people on the spectrum than it is for for neurotypical people, but what I do know is that when I meditate, I am able to lead a far more dynamic life on a daily basis than I am when I don’t meditate. When I don’t meditate, I do one thing in a day and I’m locked in my home. When I meditate daily and exercise, as a woman on the spectrum, I am able to.

When I wanted to talk about this, I thought about you this morning, Sharon, because when I got that e-mail from you that said: “I might be a few minutes late in ringing you because I have to pop down to the shop to get some cough mixture for my daughter,” I thought: “Bingo. There is the example of a woman on the spectrum who is leading a dynamic life.” What you’ve learnt to do, and this is how meditation helps us, you’ve learnt to actually go: “There is a need here for my daughter. I am a mother, and I need to go and buy that cough mixture. That will take me away from what I had planned and what was routine, but I have enough healing in me or enough well-being in me to factor that change in.” I think this is what women on the spectrum need—particularly if we’re women on the spectrum who are mothers.

The meditation, just eight minutes a day, absolutely transforms how I’m able to live in a very, very profound way. You can call it “meditation,” you can call it “breathing techniques.”

Sharon daVanport: “Quiet time.” That’s what my son calls his—his quiet time. It really works.

Camilla Connolly: It does, doesn’t it, Sharon?

Sharon daVanport: It clears the mind, just to relax for a few minutes every day. Just to set that time aside, it really does work. It really does.

Camilla Connolly: It really does.

Tricia Kenney: What do you say, then, to parents who are keeping their children on a schedule because their children need a schedule and they love having a schedule, and if something is out of order or doesn’t happen according to the schedule, their children will have a meltdown, and so on and so forth?

Camilla Connolly: Yes.

Tricia Kenney: How do we enter in spontaneity and those things? Life is not always going to work on your schedule. Things are going to happen, things are going to pop up. How do we incorporate that into child-rearing, so that our children don’t freak out when: “Sorry, we’ve got to take the dog to the vet right now” or something?

Camilla Connolly: I just think that is such a brilliant question to pose. It’s really, really, really important. It’s such a fantastic question to pose, Tricia, because there we are as families on the spectrum or mothers with children on the spectrum, and there is the need for routine to maintain a sense of order in the household and a sense of peace. And then there is also, countered against that, the need to prepare the child for the dynamic interplays of the world at large.

We have to constantly work with ourselves. For me, I have to work with that for myself. If you’re a mother or a mother on the spectrum with a child on the spectrum, you’re having to work with those two interplays with your child: developing routine and safety and that surety that they need, if the kid’s on the spectrum, and also introducing a little bit of spontaneity. And I believe it’s really important not to just go with set fanatical routine, but to actually work at mixing it up a bit here and there.

I am such an advocate of Steven Gutstein’s approach. I don’t know if you guys know of him. He’s in Texas. But RDI, for me, it’s something that a family member has used on her child in our family, and this child in our family who’s just started school this week, he was probably mid-range autistic or so a number of years ago. He’s actually re-diagnosed for want of better labels, because they’re also all for all these labels, but he’s now placed in the Asperger’s range. He’s dealing beautifully. He went to school without a major meltdown.

Sharon daVanport: Oh, nice.

Camilla Connolly: Sharon, I like Steven Gutstein’s approach, because he talks very much about developing dynamic intelligence in people on the spectrum. It doesn’t mean that we’re not going to be Asperger’s—we are. That’s who we are. That’s what we are, and I’m proud of that. But I’m also proud of the fact that I can run down to the shop these days if I need to to get that cough mixture that my son needs. And if I’m not meditating, and if I’m so rigid that everything is routine to the point of…do you know what I mean?

Sharon daVanport: Right.

Camilla Connolly: Then I lose out with the quality of my life, and others around me lose out. So I actually read Liane Holliday-Willey on Facebook the other day, and I really liked this thing she said on someone’s Facebook page. She wrote this quote out and she said: “The trick is to really know that you’re Asperger’s and to be Asperger’s, but also to have just enough of the NT in you to allow you to function in the real world.” That’s a great point.

Sharon daVanport: Right. [Laughter] Mix it up.

Camilla Connolly: I kinda liked that she’s cool in the way she often…she gets that out there in a way. My personal view, also, is that it’s never too early to start that quiet time or that meditation time for the little ones. My son isn’t on the spectrum; he’s got a lot of traits, but we have a family meditation time. He sits there quietly for five of the eight minutes or ten minutes that I do, but the change in him is really phenomenal, as a result. His reaction with his sensory stuff isn’t nearly as severe at the moment.

Sharon daVanport: Oh, how nice. Very good. That’s very good.

Tricia Kenney: I think we need to take that cue from our kids as well, when they do need time to themselves and they do need a little bit of alone time or downtime, and not be so caught up in the schedule part of our lives. We’re always so busy. We’ve always got this to go to or that to go to or this therapy or school or whatever, and it’s a lot. And it’s a lot on a little person, and so when they’re giving you these clues—having meltdowns or fits or whatever—they may just need some time to themselves to wind down and take in their day and just have that calmness.

Camilla Connolly: I think that’s so true. I think, too, it’s okay. I look back on how tired I was. I’m sure you two women can relate. The school-age years, and I can remember just coming home exhausted after six hours of being around people and, back then, not knowing why was just so [greuling?] and exhausting for me.

Sharon daVanport: Right.

Camilla Connolly: Now I look at little kids on the spectrum and I just think: “Wow, they go to school; then they’ve got to go to this therapy and that therapy. Then they’ve got to do this occupational therapy exercises at home and, and sometimes they just need to go and play in the water [if they can handle?]

Sharon daVanport: Right. It’s true.

Camilla Connolly: They just need that quiet time that you mentioned, Sharon, that you mentioned, Trish—that time out. That wonderful space where their brain and their sensory levels…their brains can empty and their sensory levels can reduce.

Sharon daVanport: Right. You know, Camilla, we started the show with you talking about so much of the challenges that you’ve experienced throughout your life and the journey towards your diagnosis. And to hear you talk now and to hear you bring it full circle, it’s just so wonderful to hear how positive you are, and you’ve come out the other side. It’s such a testament to how, if we really strive to tap into our strengths, it’s really possible to be that positive person.

Camilla Connolly: I really think it is. I’ve had a very dark two years, the past couple of years, but I really believe that we are amazing people—amazing people. And I really believe that the world at large, unfortunately, remains fairly ignorant about what the autism spectrum is, and is fairly limited in their perception of how wonderful we are. And they’re also a little bit frightened still.

I really believe that we can help each other in incredible ways. An autistic woman or an Asperger’s woman deserves more than sitting locked up in a house all day, unable to get out.

Sharon daVanport: Right.

Camilla Connolly: We deserve more than that, and we can help each other. We may need to have more alone time than most people, and we need to pursue our special interests, and we need to really pursue those solitary pursuits, but we also really deserve to have brilliant, glittering lives—wonderful lives that are rich. I often check out Katharine Annear’s Facebook page, and she’s always off doing something.

Sharon daVanport: I know; isn’t it remarkable? She’s so busy. [Laughter]

Tricia Kenney: Umhm.

Camilla Connolly: [Like?] so many women on the spectrum who have found a way to love themselves and to accept who they are. It doesn’t mean life’s easy, but it means that they’re reaching their full potential and saying, “No, I’m not defective. I’m different, but I can achieve, and I can live in the world, and I can have a relationship, and I can actually honor myself, and I can honor other people as well. And I can find a group that accepts me, even if that group is not going to be the mainstream, rah-rah, Barbie girl type group.”

Sharon daVanport: Right. [Laughter] Right.

Tricia Kenney: Can you imagine? Ah! [Laughter]

Sharon daVanport: Not really, Trish. [Laughter] I really can’t.

Camilla Connolly: [Unknown] not fit there.

Sharon daVanport: No. [Laughter] It’s so true. What is in store for you coming up this year for 2011?

Camilla Connolly: Oh.

Sharon daVanport: I believe you’re very busy, aren’t you, Camilla, with your speaking?

Camilla Connolly: I am. I’ve got some public speaking here in Australia and I’ve been asked to write an article a month for the Australian Broadcasting Commission, which is our public media organization here, a bit like PBS in America.

Sharon daVanport: Oh, okay.

Camilla Connolly: They’ve got an Internet disabilities site called Ramp Up, so I’ve been asked to contribute each month an article about Asperger’s and living with Asperger’s, so that’s really nice. I’ve got an exhibition that I’m preparing this year that will be this time next year, and in between or, rather, most importantly, really, I have my son, who’s a pretty normal little boy with a few sensory issues. But he needs me to be the best mum I can, and as a woman with mild Asperger’s, I’m learning how to be the best mum that I can be. And I can tell you, it ain’t always easy. [Laughter]

Sharon daVanport: No, it’s not, is it? [Laughter] It’s really not.

Tricia Kenney: Preaching to the choir here. [Laughter]

Sharon daVanport: Trish has twins, Camilla. She has twin boys on the spectrum.

Camilla Connolly: Oh, my goodness. Oh, Tricia.

[Laughter]

Sharon daVanport: We [unknown] honor award. [Laughter]

Camilla Connolly: Gracious! [Unknown] you must be run off your feet and exhausted.

Tricia Kenney: Almost every day. It’s getting better. When they were toddlers and around four or five, yeah, then it was exhausting all the time. But now they’re doing a lot of things on their own and it’s getting easier. [Laughter]

Camilla Connolly: How old are they now?

Tricia Kenney: They’re eight.

Camilla Connolly: Wow. My son’s eight, and he’s NT, pretty much—a little bit Aspieish, but he seems to be more NT than Aspie. It’d be cusp, I’d say. But I find one really hard, and you have two on the spectrum. You deserve the honor award. I agree with you, Sharon.

Sharon daVanport: Uh-huh. Absolutely. I get tired calling Tricia sometimes, and just listening to her have to get everything organized. I’m just wore out by the time we’ve had a five-minute conversation. [Laughter] I can’t do much more than that. That’s amazing, Trish. But you are very busy.

Tricia Kenney: Yeah. It’s a busy life, but it’s a good life. I’m very blessed with my children, and I don’t take that for granted at all.

Sharon daVanport: Very, nice. Well, you know, Camilla, I just am so excited that we have finally been able to have you on AWN radio. One thing that we always like to do with our guests is for our guest to close out the show with anything they’d like to say, anything they’d like to share with our listeners that we might have not covered, or just whatever you would like.

Camilla Connolly: I think I’d just like to say to all the women and girls out there to really, really be proud of who you are, and to really have faith in the possibility of life being really beautiful and wonderful for you. And I’d like to say that there are amazing older women in the Asperger’s and autism community who really are reaching out and are there to help. I know that you two are both two of those women. You’re role models and leaders. And if you’re younger, do know that it gets better and that it does get easier. It really does, and just have hope and faith that things will be okay, and that they can be better. That’s really all, and a special hello to Libby Board.

Sharon daVanport: Yes, Libby’s listening. [Laughter] We know Libby’s listening; she posted over on Facebook she would be.

Camilla Connolly: Hi, Libby!

Sharon daVanport: [Laughter] And there’s such a nice comment that just came in from our chat room. From Stacy Sylvia, she said that “this has been a fantastic podcast and it made me cry.” That’s what she said; it brought tears to her eyes.

Camilla Connolly: That’s wonderful. How beautiful. Stacy, thank you, and I hope you have a lovely day and a lovely life. You deserve it.

Sharon daVanport: Absolutely. You know, Camilla, I’m so happy that you were able to share these experiences with everyone. I know that just to hear your experience and to be acquainted with you and to know you has brought me a lot of strength since I’ve know you. I’ve learned so many lessons along the way of knowing one another.

Camilla Connolly: [Unknown]

Sharon daVanport: And I look so much forward to continuing on and getting to know you better. It’s just been lovely to have you on the show.

Tricia Kenney: I just want to make sure people get a chance to check out your artwork, too. I know we didn’t get a chance to talk about it very much, but if they do head over to your websites at all, really get a look at the amazing talent that you have.

Camilla Connolly: Like so many women on the spectrum.

Tricia Kenney: I especially like that one, it was titled “Up.” [Laughter] That was a good one.

Camilla Connolly: It’s “Up” and in brackets it’s “One for the Bullies.” That’s up to the bullies.

Sharon daVanport: Oh, okay. You’re funny, Camilla. I love your sense of humor. Goodness. Well, thank you so much, Camilla.

Camilla Connolly: Well, thank you so much, too. This was wonderful.

Sharon daVanport: All right. You come back.

Camilla Connolly: Thanks to the AWN.

Sharon daVanport: Okay. Thank you, Camilla.

Tricia Kenney: Thank you, Camilla.

Sharon daVanport: [Unknown] and we’ll talk to you later. Okay. Bye-bye.

Camilla Connolly: Bye.

[Camilla hangs up].

Sharon daVanport: Okay, everyone, that’s going to do it for us today on AWN radio. I think that we’ve just about done it for today. We’ve almost run out of time. Is there anything that we’ve forgotten, Trish, or is that going to abougt do it for us?

Tricia Kenney: That’s about it. I do want to thank Stacy in the chat room again. She’s sharing some lovely experiences. She said she just had a girl from second grade who used to bully her apologize to her last night. She said she’s 39 years old now, so that’s a wonderful healing experience.

Sharon daVanport: Wow.

Tricia Kenney: I’m glad when we can reach out and actually connect with people like this. I love shows like that.

Sharon daVanport: Very true.

Tricia Kenney: I guess until next week when we’ll be on again, I just want to say thank you to everyone for being here and listening in. We had a pretty full chat room and a pretty full listening line tonight, so I appreciate it.

Sharon daVanport: All right. So we’ll see you guys next week, noon Central Standard Time. That’s going to be with Valerie Paradiz for our Valentine’s Day special. We’ll be talking to you then. Have a great week, everyone. Bye-bye.

Tricia Kenney: Bye-bye.

[End]

[Music]

Tricia Kenney: Hello, everyone, and welcome to AWN radio. My name is Tricia Kenney and it is Monday, December 27, 2010. I wanted to let everyone know that Sharon daVanport will not be hosting today. She’s a little bit ill and just a little bit under the weather, which seems to be really going around with everyone right now. So we’re hoping that she feels better and that her family feels better, and that she’ll be with us for the New Year’s Eve show that we’ll be doing.

That will be on the 31st, and we’ll just be going over the events over the past year—both in the autism community and around the world. It should be a fun show, and there were a lot of exciting things that happened in 2010. Hard to believe that it’s going to be 2011 so soon. In any case, one of the big things that happened this past year had to do with our guest today. Our guest today is Temple Graqndin. She had her HBO movie come out and won some awards, so it was very, very eventful for her.

We are waiting for her to call in right now. There was a little bit of a mix-up with the phone number, but she hopefully got our message and will be dialing in soon. In the meantime, I’m going to go ahead and play the theme music real quick so that I can switch over to the other line for her, and then I’ll be joining you back in just a moment. Thank you for your patience, and just bear with us. We’ll get her on here. Just hold on. [Laughter]

[Music]

Okay, we are back. Thank you for your patience. I have Temple on the line now; there was a little misunderstanding [of?] the time, and so we got her on the line. So I just want to go ahead and bring her right in. Hi there, Temple.

Temple Grandin: Hi. How are you doing?

Tricia Kenney: Good. I’m so glad you were able to join us today, and I do apologize for that little mix-up. I wanted to just ask if you had a good Christmas.

Temple Grandin: I certainly did; yeah.

Tricia Kenney: And if you have any plans for New Year’s.

Temple Grandin: Well, we’re still having a terrible snowed-in problem here in New York, with the three airports shut down until 4:00 this afternoon.

Tricia Kenney: Oh, my goodness. Yeah. I was seeing everybody posting about the snow that hit.

Temple Grandin: Yeah.

Tricia Kenney: I didn’t get to see much of that; I live in Wisconsin.

Temple Grandin: Yeah.

Tricia Kenney: Luckily, we haven’t been really hit that hard this year, but a lot of people have. Are you stranded there now?

Temple Grandin: Well, I got stranded for two days.

Tricia Kenney: Wow.

Temple Grandin: I’ve got a flight out that goes tomorrow, and so far that flight’s operating.

Tricia Kenney: Today we wanted to talk about tapping into your child’s potential, especially in regards to autism. Now, what do you think of when somebody asks you about their child’s potential? Do you think there’s any limitations?

Temple Grandin: The thing is, autism’s a really broad spectrum. At one end of the spectrum, you’ve got a mild Asperger’s, and with the new diagnosis proposals, that’s going to be merged into the autism diagnosis. So at one end, you got a brilliant Asperger’s working out in Silicon Valley, a geek or a nerd with no obvious speech delay. Then at the other end of the spectrum, you’ve got somebody who’s going to remain nonverbal.

So there’s different levels of accomplishment that people can do. You have somebody smart, the geek end of the spectrum, you need to work on developing whatever their strength is. And skills tend to be uneven. You might have a person who’s really good at art. When I was a child, my ability in art was really encouraged, but I was weak in math. Another kid might be really super good in math, but weak in reading. Another kid may have good verbal skills. You need to build up the area of strength. Build up that area of strength into things that can be careers.

Tricia Kenney: When a child is going through the schooling process, let’s say, a lot of times there isn’t that leeway. They expect you to be good in reading, math, science and art and gym, and you get graded accordingly. You just feel like a failure if you’re not good in all of those subjects.

Temple Grandin: I was not good in a lot of things, but I was good in art. And that was my one area of really good accomplishment. I think it’s a shame that a lot of schools are taking these hands-on classes out of the schools, like art and wood shop and welding and things like that. That’s where a lot of these quirky, nerdy kids can really excel. I’m seeing a lot of those kids just getting addicted to video games now and just getting in trouble, because they didn’t have a science teacher that motivated them to study.

Tricia Kenney: Right. What’s really sad, too, is when you have music class or art class, that really helps you to learn better in other classes as well.

Temple Grandin: Yeah.

Tricia Kenney: It’s really intertwined in the learning process. I think they’re doing a huge injustice to children nowadays when they are just completely abandoning any of those services in school now.

Temple Grandin: Well, I think that…You take the kids that have uneven skills. Some of those hands-on classes are the classes that they excel at. Then you have other kids that are the mathmatics smart kids, and that kid, if he’s in fourth grade, may need to be three grades ahead in math, but he may need some special ed and some tutoring in reading. You always get back to the uneven skill thing.

Now, of course, you’ve got the other end of the spectrum, where they’re going to remain nonverbal. But if you work with them, then tney’re going to be able to do a lot of basic living skills. Some of the nonverbal people can learn to read, even though they don’t talk. You can read Tito Mukopadhyay’s book: How Can I Talk if My Lips Don’t Move? to learn more about that. It’s a very, very big spectrum.

I can’t emphasize enough the importance of early educational intervention. You have a child that’s not talking at age two, the worst thing you can do is nothing. You’ve got to spend 20 or 30 hours a week of one-to-one teaching with that child.

Tricia Kenney: Right. And even if they aren’t verbal, if they don’t communicate in a verbal way, there are so many ways nowadays to communicate without having to be verbal. I think that really, if you are in that situation, it doesn’t necessarily mean that your career choices or that your lifelong prospects are nil. You can do any sort of computer work or stuff where you can work out of your home or if you have a place of employment, and hopefully there will be places of employment that let you use that assistive technology—

Temple Grandin: That’s right.

Tricia Kenney: —in the future, so that you aren’t so limited.

Temple Grandin: That’s right.

Tricia Kenney: Something I even noticed with my own children: One of my sons really didn’t talk much. He talks more now. He’s starting to use more conversation-type talk. But even so, he can read very well. He can read very well and he can type very well, and he does really well on the computer. And he’s smart. He figures out [how to do stuff?].

Temple Grandin: Some of the individuals that are nonverbal can read and can type, and I think keyboards need to be introduced really young, so they’ve got an opportunity to learn how to type. You start out just teaching nouns, maybe start out with food items, something that the individual’s going to be interested in.

Tricia Kenney: Right. My son knew how to type “train” before he could type anything else. [Chuckles]

Temple Grandin: Yeah, because that’s something he’s interested in.

Tricia Kenney: Exactly. It’s just like: “Okay, let’s try to work on some smaller words, too, so you can broaden your range of what you’re looking for online.”

Temple Grandin: That’s right.

Tricia Kenney: But I think it’s really important that we do stress to parents that even if your child isn’t verbal, even if the doctor said he’s going to need care for the rest of his days and won’t be able to get married or have a job or do anything like that, I think a lot of people need to ignore that when they get that sort of comment from a specialist or professional.

Temple Grandin: [The thing is?], when a child’s very young, you can’t really tell how severe they are. When I was two and a half years old, three years old, I had no language. I wasn’t fully verbal til age four. I looked really severe. Now, one thing that was good is I did not have epilepsy. That was one of the things they were able to check: there was no seizure activity. And if there’s no seizure activity, that’s usually a good sign.

Tricia Kenney: Right, right. It’s sad when people not necessarily give up, but they are depressed and sad, thinking 20 years ahead, and they don’t necessarily need to do that. Focus on the now and keep fighting and keep working, and you just never know.

Temple Grandin: Whatever you keep working on, what you want to try to do is find stuff where you start to get progress. You can get into problems with sensory overload. I had problems when the school bell went off; that hurt my ears. There are some children and adults that if you take them in a noisy shopping center or a big supermarket, they just can’t tolerate all that noise and commotion.

Tricia Kenney: Right.

Temple Grandin: And if they get into that kind of sesnory overload situation, they’re not going to be able to function. Then you’re likely to have temper tantrums and meltdowns, because they feel like they’re inside the boiler at a factory or inside the speaker at the rock concert.

Tricia Kenney: Right, right. And of course, how is that going to be a learning environment for that child, when their body is so focused on everything else?

Temple Grandin: Yeah. It can’t be. I went to school in an old, structured classroom, multi-classroom. 12-13 kids in the class with an older, experienced teacher. Everybody worked on doing he same things at the same time. The kind of big, noisy classroom with 30 kids doing diffeent things, I would’ve had problems functioning in that when I was a little kid.

Tricia Kenney: Right. Well, a lot of people are fighting for inclusive classrooms.

Temple Grandin: And it’s the right thing to do. For some, it’s the right thing to do. So much depends upon the particular school and the particular situaion, so I always ask parents, whatever situation their child is in, I go: “Is he progressing?”

Tricia Kenney: Right.

Temple Grandin: “Is he progressing?” And whatever educational situation you have him in, if he’s progressing, then I might suggest some things to add to it. But I find it so situation-dependent. You’ve got one kid mainstreamed who’s doing great; you’ve got another kid mainstreamed that’s a mess and they’re just letting him sit in the corner and not do anything. It’s so variable from school to school. It’s particular teachers, particular principals, particular places—that’s what seems to make the difference.

Tricia Kenney: Right. And again, as we find out more and more as we go along on this journey, there’s no blanket solution.

Temple Grandin: No. The one thing that every expert will agree on is that the little kids, two, three and four year olds that are nonverbal need 20 hours a week of one-to-one teaching with an effective teacher that gets progress. Now, people are going to argue over what exact teaching method you use, but everybody will agree that these little kids need 20 or 30 hours of one-to-one face time with an experienced teacher. I ask parents in that situation: “Is your child making progress?” Because you get a teacher that’s not right, they might be driving the kid into sensory overload, and that’s like pounding on a brick wall. You’re not going to get any progress.

Tricia Kenney: So what can someone do if they are in that situation? If they happen to be in first grade and it’s just going down the tubes—everything all the sudden is just awful and they’re not making progress?

Temple Grandin: Well, then you may have to do something else, then. Okay, like the situation where the mainstream situation doesn’t work, and then you go over to another school and everything works just fine. And then some parents have chosen to homeschool kids. But if they do that, they need to make sure you set up enough time so they can interact with normal kids and play games with normal kids and not be isolated from normal kids.

Tricia Kenney: Umhm. Yeah. I think we learn so much from just being around other people.

Temple Grandin: That’s right.

Tricia Kenney: It makes a huge difference. Just for example, one of my sons went into Head Start—this was several years back—and they didn’t have a separated special needs situation. So he was just right in there with everybody else, even though he really didn’t seem to notice anybody else existed there. [Laughter]

Temple Grandin: Yeah. And that didn’t work, and there might be some other Head Start where it works just fine.

Tricia Kenney: It ended up working; it ended up working.

Temple Grandin: It ended up working? Okay, well, good. It ended up working. Great.

Tricia Kenney: Because by the end of that school year, he was interactive with the other kids; he was initiating play with the other kids.

Temple Grandin: Good.

Tricia Kenney: He was participating in group activities in the classroom. It was a huge difference. Sometimes when it seems like it would be an imposaible situation, it ends up being very instrumental in the progress of that child.

Temple Grandin: That worked. You see, again, it gets back to the particular situation, the particular teachers, the people involved, and that’s a lot to do with whether it works. And if you asked me: “Private school versus a public school?” I don’t think that matters. It’s the particular school and the particular teachers and that particular situation seems to be one of the biggest factors in whether or not things work.

I’ve found when you get out in the rural areas, the rural areas either tend to be just wonderful or maybe it doesn’t work at all, because they’re even more dependent on particular people in a particular place. But there’s some rural schools out in the countryside that they’re excellent.

Tricia Kenney: Umhm. Yeah. And again, it’s just luck of the draw.

Temple Grandin: Sometimes it is, and everyone’ll agree, with these little kids they’ve got to get 20 or 30 hours a week of one-to-one. And then, as the kids get a little older, you start to have ones where: “Oh, this kid’s really a genius in math” or “This kid’s really good at art.” Then you have others, maybe they remain nonverbal, and then you’ve got some, unfortunately, that have got epilepsy and they’ve got a lot of other medical problems. They’re not going to learn to read. But if you work with them, they can learn to do simple life skills, like dressing themselves.

One thing I’m getting concerned about is I have seen really smart, nerdy kids on the high end of the spectrum, where they aren’t pushed enough. They don’t know how to order food in a restaurant. They’re combing their hair with a fork in a restaurant, because they weren’t just taught not to do these things. Everything has to be taught in the specific situation, and I discuss that in a lot of my talks and [The Way I See It] book. You’ve got to teach things by specific example. Okay, what’s table manners? Well, each time the child makes a mistake in table manners, you correct it. You say: “Now, don’t comb your hair with your fork. Keep it down on the plate.” Or: “You use your fork to eat the mashed potatoes, not your hands.”

Tricia Kenney: Right.

Temple Grandin: And then each one of those little corrections just goes into the Good Table Manners file in the kid’s brain. Everything is learned by specific example. It’s bottom-up thinking; it’s not top-down. They’ve got to learn everything [by] specific example. How do you learn not to run across the street? Well, you’ve got to be taught at school, at the library, at the Jones’ house, your own house, at Granny’s house, that you look both ways before you cross the street. So to generalize that, you’ve got to teach it in a whole lot of different places. To teach number contexts: count pens, count toy dinosaurs, count pennies, count bottlecaps. They’ve got to learn that numbers apply to many different things.

Tricia Kenney: Right, right. And I think we get caught up sometimes in the care and the presusre and the paperwork and all these appointments and all this stuff, and it gets very exhausting. Then we’re also pummelled with all these different therapies that are out there, and all these different things that we’re supposed to be doing with our children, and it gets overwhelming. And then we feel like we’re bad parents.

Temple Grandin: Well, I try to give simple, practical advice in both of my books. The Way I See It, that has a lot of practical advice on making decisions on things like therapies and medications. You’ve got to think logically. There are a lot of people out there selling a lot of stuff. And then my other book is [Thinking in Pictures.] That gives a lot of insight into how people with autism think, and jobs, how I started out my career one little freelance job at a time. I think a lot of parents’ll find both those books really helpful.

There’s a lot of people selling a lot of stuff. And they’ll say: “Oh, if you don’t do my treatment, your kid’s going to not develop.” Well, I have found when it comes to teaching methods, so much of it depends upon who that teacher is. You’ve got a good teacher, I don’t care what school of theory that teacher belongs to if that teacher’s going to be good. Because the good teachers are more flexible. I find that ABA starts to look like Floortime or some other therapy, and Floortime or Pivotal Response starts to look like ABA. The good teachers are not rigid.

Tricia Kenney: Right.

Temple Grandin: People have asked me about Montessori schools. There’s been some kids that have done well at Montessori schools; others haven’t. I think so much of it gets back to the particular teacher and the particular situation, because there’s certain good teachers that just know how to work with little kids, and I think it’s an instinct that they’re born with.

Tricia Kenney: Yeah. I think so, too. I think that it really comes through when you see the teacher taking an interest in what that child’s personality is.

Temple Grandin: Oh, well, let’s take the first word that was typed was “trains.” Well, then, let’s teach reading with trains. Let’s do mathematics with trains; learn about the history of the railroad. Take that thing the kid’s interested in and use it to motivate. Get some associative link back to the train interest. And a lot of these interests start out as sensory: he likes trains because he likes to watch the fast movement. Then there’s other kids that can’t stand trains and they’re afraid of the fast movement.

But it’s normal for kids on the spectrum and adults to get their favorite interests, and you somehow have a connection. Okay, let’s say all he wants to do is draw pictures of trains. Well, let’s do a picture of the station. Okay, let’s do a picture of a place a train travels to. There you’re getting an associative link back to his favorite thing: trains.

Tricia Kenney: Okay. That’s really good, and that kind of leads me into: What do parents do when your child has an obsessive interest? A lot of parents are told: “You have to stop it.”

Temple Grandin: Oh, no. I wouldn’t totally stop it. I wouldn’t totally stop an obsessive interest, unless it’s something totally inappropriate like guns. I don’t really [want?] an interest in guns. But if it’s something like trains or airplanes or dinosaurs—those are some of the really common interests—what you want to do is take that motivation for that fixation and broaden it out.

Let’s say all the kid does is he does pictures of trains. Well, then, we’re going to do pictures of where trains travel to. Maybe do some pictures of some of the people that go on the train. You see, you have an associative link back to trains. Well, do a mathematical problem with trains. You can do the same thing with dinosaurs. We read books about dinosaurs.

In other words, use that motivation of that fixation to motivate learning. And it’s associative thinking, so as long as something even has a remote association to trains and you can show the kid how it’s associated, then you’re tapping into the motivation that that fixation gives you. So what you want to do with the fixations, you don’t stomp them out, because these are things that can turn into careers and hobbies. What you do is you broaden them. And you broaden them into more areas, so they’re not so fixated. I wanted to talk about cattle chutes all the time. Well, people don’t want to talk about cattle chutes; they want me to design them.

Tricia Kenney: Right. What about when that interest is, say, video games? Because so many kids are so immersed?

Temple Grandin: I think you have to limit that. Now, there are some kids that could learn how to program a game. And then I’d limit the video game playing to an hour a day. They just get totally fixated on it. Now, maybe, you might be able to use the subject of the video game to teach lessons, but the actual video game playing, it’s just got to be limited, especially in little kids.

I could’ve been one of those video game addicts. If video games had been around when I was a child, when I was a teenager, I would’ve wanted to play video games; I would not have wanted to take care of the horses and build things. I’m seeing a lot of kids becoming video game addicts, and for every kid that can actually learn how to program a game and go into that industry, there’s ten others that don’t have the right type of art skills or the programming skills. I’m good at art, but the kind of art you need for video games, I wasn’t good at, and I couldn’t do programming. I wanted to, but I didn’t understand it. So I could’ve seen myself as being one of those video game addicts. Video game playing just needs to be limited: an hour a day. What they call idle screen time. Now, if they want to spend six hours a day programming a game, fine, but not playing it.

Tricia Kenney: Right, right.

Temple Grandin: We’ve just got to limit the video game playing. We’ve got to get interests…we need to start thinking about what the kid’s going to do when he grows up. Well, he can’t be a beta tester for a video game company. Every teenager wants to, there’s thousands of kids that want to do that. That’s not a viable option for a job. And for every 20 video game addicts, there’s only about one that would actually be capable of going into the industry. And if they’re capable of going into the industry, fine. That’s great. And the two main jobs are programming and artwork, but the video game industry’s very crowded, very difficult to get into, and you have to be the very best.

Tricia Kenney: Yeah, yeah, definitely. And it’s something that we see our kids are so good at, so naturally good at, and you’re just like: “Wow! That’s amazing!” As an adult, we try and do some of these things that our kids are doing, and your hand-eye coordination is…

Temple Grandin: And video games teach hand-eye coordination, but the problem is, they teach you how to be a fighter pilot, but most people arent’ going to be a fighter pilot. We’ve got to start figuring out how to broaden this out. Could this child learn programming? You get out in the Silicon Valley area, the parents that are in the computer [unknown] teach their kids how to program. Great, let’s teach the kid how to make a game.

But then there’s a lot of kids that are video game addicts, and they could never learn how to program a game. It’s just like TV watching. I was limited when I was a child to an hour a day of TV watching, and I think video game playing has got to be limited. We’ve got to start teaching kids work skills. When they get into middle school, they need to start doing little jobs. When I was 13, 14 years old, I had a little sewing job, where I did freelance hand sewing for a lady that worked out of her house. When I was 15 I made the gate that’s shown in the HBO movie. I was taking care of nine horses. I was getting work skills.

Let’s say a kid is interested in computers, well, he’s 13 years old, 12 years old, he can become the neighborhood computer fix-it guy. He’s the one that fixes other people’s computers when they crash, because I want to start teaching job skills. Walking dogs would be another thing that they could do. Mowing lawns. Kids have got to start learning these job skills. You’ve got to show up on time; you’ve got to mow Mrs. Jones’s lawn every Monday afternoon, unless it’s raining.

Tricia Kenney: And I think it’s important to keep those goals out there, not only for our children who are indiscernable from their peers, but for the rest of the population as well. If your child has a way to make their bed, show them how to make their bed.

Temple Grandin: Well, that’s just it. There’s not enough expectations for behavior. When I was a young child, I was able to go out to nice restaurants and behave. Now, some of the noisy restaurants we have today, I would’ve had a problem with, but we’ve got to have some expectations for behavior. Obviously, if a child’s having problems with sound sensitivity, we can’t force him to be in a noisy sports bar where there’s sensory overload with 15 televisions going on all at once on diffeent channels. I would’ve had problems with some of that kind of stuff. But on the other hand, a quiet dinenr at Granny’s, there was expectations for table manners and behavior, and usually I complied. I’m not seeing enough expectations for the things they can do.

Tricia Kenney: Umhm. I think a lot of people just do a blanket assessment: “Well, if they can’t tie their shoes, I’m not going to sit there and try to get them to make their bed.”

Temple Grandin: Well, I had trouble learning to tie my shoes, and I had to keep trying to do it until I finally learned how to do it.

Tricia Kenney: Umhm. And I think just because your child may not be able to tie their shoe at this moment doesn’t mean that they aren’t able to pick up their toys or make their bed or learn to brush their hair.

Temple Grandin: I was epected to do those things. I did have trouble in the beginning tying my shoes, but then I eventually did learn how to tie my shoes.

Tricia Kenney: I did want to ask about the sensory issues. I know we talk a lot about how the sensory overloads happen in all the different environments.You hear a lot about how these sensory diets help fix that. Have you seen a lot of progress in that way? Does it work?

Temple Grandin: Some [it seems to work?] very well. It depends upon the child. It’s very variable. See, one of the problems you have in autism is one child will have sound sensitivity; another kid has problems with fluorescent light flicker at the local Wal-Mart. Another child’s very touch sensitive, and can’t stand to be hugged. But some of those kids will seek deep pressure, and you can actually desensitize them so they’re going to like being hugged, but you’re not going to get scratchy wool against their skin. There’s no way I’m wearing wool against my skin. That’s just absolute torture.

Tricia Kenney: Yeah.

Temple Grandin: But the sensory issues vary. They vary from being a nuisance to being very debilitating. They also vary in which sensory system’s involved. One child may be mainly sound sensitive; another one may have smell sensitivities, or you can have visual sensitivities. It’s very variable. So maybe doing some ways to do deep pressure, maybe under some bean bag chairs or sofa cushions, can work for one child. Another child, it’s not going to work. You have to look at what kind of sensory issues does the child have. It’s very variable across the autism spectrum. Those things should be diagnosed by which sensory system’s involved, not “autism” or “not autism.”

Also, other disorders can also have sensory issues. Some kids with learning problems have sensory issues; some kids with dyslexia have sensory issues; some ADHD kids have sensory issues. This brings up the whole diagnosis thing. Diagnosis is not precise, and they’re proposing right now to take out the PDD-NOS, take out the Asperger’s. But the thing is, these are not precise diagnoses. They’re behavioral profiles. It’s not precise like a lab test that tells you whether or not you have tuberculosis.

Tricia Kenney: Right, exactly. Anybody who has a child who’s been diagnosed knows that there’s no X-ray that’s done; there’s no blood drawn.

Temple Grandin: No, that’s right.

Tricia Kenney: It is simply a battery of tests, of observations.

Temple Grandin: There’s differences between clinicians. The new guidelines that they’re proposing for 2013, there’s two big things they’ll be looking at. One of them is they’re taking the speech delay stuff out, and they’re just saying: “By early childhood, a lot of problems with social interaction,” really emphasizing social. And then the other thing is the repetitive behavior, fixated interests, and then also they can have sensory issues. And the speech delay stuff, they’re proposing to take out. So you’ve got a lot more emphasis on the lack of social interaction and the repetitive behavior and fixations.

Tricia Kenney: So they won’t automatically say somebody who is nonverbal by the age of three [unknown]—

Temple Grandin: No. They’re just saying “early childhood” now. And they’re taking out the stuff about the speech delay. If you want to look at those proposals, you can go to Autistic Disorder (Autism Spectrum Disorder) Proposed Revision And then you can pull up the proposed guidelines and you can go on that website and you can pull up all the proposed guidelines for other disorders. The thing is, you’ve got a committee of doctors sitting in a conference room, deciding what these things are going to be. Some of it’s based on research; some of it’s based on opinion. I have problems with some of these diagnostic categories they’re coming up with, like Oppositional Defiant Disorder.

Then you have things in there that are definitely real disorders, like schizophrenia. Then you have autism, where maybe you take a kid that’s a geek or or a nerd, and he’s a little less social. When does that just become a personality variant? There’s no black and white dividing line between autism and non-autism.

Tricia Kenney: Right. Generally, none of those kids would’ve been diagnosed ten, 20 years ago.

Temple Grandin: Exactly. Exactly. And then [unknown] [I?] can think of all kinds of kids that’d be diagnosed Asperger’s today. I just got asked all the time about: “Is autism increasing?” I think severe autism has increased, but the Asperger’s, they’ve always been here. I can pick out kids I went to school with in the ’50s that would definitely be diagnosed Asperger today. And they were just diagnosed as being a little geeky in the ’50s.

Tricia Kenney: Right. And it wasn’t any big red flag.

Temple Grandin: No, no.

Tricia Kenney: If you muddled through your studies and you excelled in one or two, you’re fine. [Laughter] And get on with your life kind of thing. So it’s a little bit different now, and it gets very oppressive when we have all of these diagnoses put on us.

Temple Grandin: First of all, don’t get hung up on these labels, because they are behavioral profiles. They are not precise. When you look at how the brain is set up, you look at the whole DSM-V thing, you’ve got diagnostic categories where I’m going: “Wait a minute. I don’t think this should be a medical disorder.” And then right beside this, I’m like: “Autism, that’s a real thing, schizophrenia, bipolar,” and I actually like the old term, “manic-depression” better, because it better describes what actually happens—alternating mania and depression. Obsessive-compulsive disorder’s real.

They’re coming up now with “temper dysregulation disorder,” where there’s just a lot of meltdowns all the time. That has to happen after age six to be diagnosed with that. I’ve been reading some of the stuff in Science and Nature, which are two premiere scientific journals. Eventually, we’ll be 20 years into the future, we won’t be using these behavioral profiles anymore. We’ll just put them in a brain scanner and go: “Okay, well the amygdala’s not responding to faces. It’s face-recognition circuits are messed up.” And be able to just target therapies based on what showing up on real-time brain scanning. But that technologies not here yet.

Tricia Kenney: What would be really nice is if you could enroll your child in school, and have the teachers say: “Okay, we’re doing a little bit of testing. Obviously this child needs this and this and this and that, and is doing fine in that area or this other area, so we’ll give a little extra effort towards these target points.” They don’t have to go through the whole diagnosis process.

Temple Grandin: People get hung up on the diagnostic label. I say: “Okay, now what is the child’s problem?” First of all, I want to find out what his verbal ability is. How his speech level is. How old he is. Okay, what’s he having problems with? Is he sound sensitive? Then you do something about the sound sensitivity. One of the things you can try doing there is set up a situation where the child can initiate the sound.

Let’s say it’s a dreaded smoke alarm, and he’s afraid to go in a room that he sees a smoke alarm. Well, maybe get a smoke alarm—an old one—and wrap it up in about ten towels, and he can reach inside and he can turn it on. It’ll be really faint. Then you gradually take the towels off. A sound that the child initiates is tolerated better. And then eventually you peel the towels off, and the smoke alarm’s going to get louder and louder and louder.

Or maybe you could record it on a recording device. But the problem you have with MP3 files is they don’t get true fidelity. So on the dreaded smoke alarm, I want to make sure we have true fidelity. So get an old real smoke alarm and wrap it all up and make it quieter, and then let him turn it on. But it’s very important that the child initiates the dreaded sound. Then he can turn it off, too. He has control.

Tricia Kenney: Instead of harboring your child and protecting them from that sound and saying: “Well, my child can’t go to school that day because you’re doing fire alarm testing—”

Temple Grandin: Well, there’s some kids where they can learn to tolerate the fire alarm, and there’s some that cannot. There are some very, very, very sound sensitive and light sensitive [people] that are never going to tolerate the big supermarket. I’ve taught parents where the child takes three days to get over a trip to the supermarket. And then there’s others that can get in there and they can learn to tolerate it. I can’t stand the sound of those awful hand dryer blowers that they have in the restrooms.

Tricia Kenney: Mm, yeah.

Temple Grandin: I actually hate them, but I tolerate them. I tolerate them. I don’t like them, I want to get away from them, I don’t want to use them, but I can tolerate them.

Tricia Kenney: Right.

Temple Grandin: Where when I was a little kid, I…they didn’t have those in the ’50s, thank goodness. But let’s say they’d had them in the ’50s. That’s something where I could’ve learned to tolerate them. I still don’t like it; I still want to get away from it.

Tricia Kenney: Right. But there are so many things that are just going to be a part of life.

Temple Grandin: Well, that’s right.

Tricia Kenney: And so what do we do? Obviously, we can’t protect somebody from certain things for all of their existence.

Temple Grandin: No, you can’t. You can’t. I was in the airport one time and the fire alarm went off in this big, long concourse, and I moved down the concourse, and I just got blasted out by another fire alarm. No, I couldn’t start screaming in the middle of the airport. I had to just take it. I hated it, but, you know.

See, it depends upon the severity of the sensory problem. There are some individuals where the sound sensitivity’s so bad or the fluorescent light sensitivity is so bad they can’t tolerate it, and there’s others that can learn to tolerate it. One of the things you can do for the fluorescent light thing, if you’re in a classroom that has this problem, is put 100-watt lamp next to the child’s desk to blot out the fluorescent lights, or get the child’s desk over by the window to blot out the fluorescent lights.

The sensory problems is one area where I think there needs to be a lot of research. I know people that are totally debilitated. Another thing on sound sensitivity is, if you wear earplugs when you’re in a noisy cafeteria, that’s fine. But they have to be off half the day. If you don’t have those earplugs off for half the day, or that headphone off for half the day, then your ears’ll get more sensitive.

Tricia Kenney: Right.

Temple Grandin: So it’s okay to put it on to go shopping in the supermarket, but then when we get out in the car, I want it off. Or when we get back home, I want it off. You don’t want to make the ear more sensitive. Actually, it’s the brain that gets more sensitive, not the ear.

Tricia Kenney: I was watching a video about sensory processing disorder. In it, they did say that with enough sensory therapy, that it will correct the sensory processing disorder.

Temple Grandin: Yeah, that’s right. You can partially correct it. I know people that have gotten Irlen colored glasses, and it seemed like it did kind of correct it. I think some of them can be partially corrected. There’s others that probably will never be totally corrected.

Tricia Kenney: Okay. I was thinking: “Okay, so if we just do this massive sensory diet therapy thing, then all of those connections will be fixed, and they won’t have that sensory issue anymore.” But that’s not necessarily true.

Temple Grandin: No, not quite that. I don’t think it’s quite that simple. I think it depends upon the initial problems of the brain to start with. There are some children where you do a weighted vest; it works really well. But remember, 20 minutes on, then you’ve got to take it off a while, because if you leave it on after he habituates, it’s not going to work. You don’t want to do these things too long.

And there’s some kids where these things work. There’s some kids where it can correct, and I think there’s others where it doesn’t. This is something when they get the right kind of brain scanning programs, you’d be able to look in the brain and see maybe how the circuits are getting corrected. And there’s evidence that there is plasticity and circuits can get corrected. And then there’s others where it doesn’t correct. I think it depends upon the initial problems with the brain. And again, if there’s epilepsy involved, that makes everything worse.

Tricia Kenney: Mm. And I think parents need to really consider, not everything is autism, either.

Temple Grandin: That’s right.

Tricia Kenney: In one of my children, there was birth trauma, which I’m sure adds to everything. I have two autistic children, and they’re twins, and one is indiscernible from his peers, the other one is not. And the one who is not did experience some birth trauma, and so I have to take that into account when I’m dealing with him and what he’s doing. But he still progresses. He’s still capable of learning.

Temple Grandin: Well, that’s right.

Tricia Kenney: And I think we have to decide what we consider success. Not all of our children are going to grow up to be a doctor or a lawyer or a scientist.

Temple Grandin: That’s right. That’s absolutely right.

Tricia Kenney: I think success would really be better measured in happiness and fulfillment.

Temple Grandin: Well, and then also, just gradually learning new skills. I’ve found even in myself, I keep learning new things every day. People have told me my talks at age 60 are better than my talks at age 50. The thing is, you keep learning, bottom-up learning rather than top-down. The normal mind gets the theory and then tries to put all the information into it. But the thing about being on the autism spectrum is, you can always keep improving and always keep learning.

And you’ve always got to stretch the envelope a little bit. Obviously, there are certain individuals you can’t take into a busy Wal-Mart. They just can’t tolerate that. But then there’s others where you stretch it, and you take them in there for five minutes when it’s not busy and they gradually learn to tolerate it. It’s so variable.

Tricia Kenney: Exactly. And I think it’s wonderful that you’re talking about this, because you are an autistic woman, and you were considered moderate-to-severely affected when you were little.

Temple Grandin: When I was a little kid, I had no speech at two and a half to three—no speech at all. I would scream; I’d sit and rock. So I was severely affected. Now, the one good thing for me is, they tested for petit mal or small little epilepsies, and I did not have epilepsy. In other words, my EEG was normal. Now, of course, it’s a 1949 EEG.

But the doctor I went to, [Unknown] Carruthers, he tested me at two and a half with a neurologist, a real famous neurologist at Boston Children’s Hospital. She said that she was really pleased that I did not have petit mal epilepsy. I was specifically screened for that. Unfortunately, where you’ve got a lot of epileptic activity in the EEGs, that’s not a good sign, because the brain has more problems if they have epilepsy, and I’ve never had a seizure. But I’ve talked to parents where the child has autistic symptoms and they’re having non-stop seizures. Well, now you’ve got a problem that goes way beyond autism.

Tricia Kenney: Yeah. Yes. And again, you need to look at everything that’s going on with your child. You can’t just say: “Well, it’s autism,” because we’re human beings and there are an array of things that go on with our bodies. To try and just say: “Well, there’s autism for you,” that is not really—

Temple Grandin: I do want to apologize for doing interruptions. I still have problems with knowing when to break in to a conversation. I know I did interrupt you, and I want to apologize for that.

Tricia Kenney: No, no, that’s okay. [Laughter] When you’re on the phone, it’s a little different because you’re not face to face and you don’t have those sort of cues, where you can see where you can break in. When you’re on the phone, you’re [unknown].

Temple Grandin: I just want to end up saying, you need to look at what exact symptoms your child has. If it’s speech delay, you need to work on the speech. If it’s sensory problems, you need to work on the sensory. If it’s temper tantrums, you need to work on ways to control that. A lot of autistic kids have gastrointestinal problems. Those need to get cleared up.

Tricia Kenney: Right. And another thing, I think, is to look at where it’s coming from. If your kid is misbehaving, tantrumming and things like that, maybe it’s not just because they haven’t been trained very well, but maybe there is something else going on. Maybe it is a sensory issue. You have to look at the environment that it’s happening in, as well.

Temple Grandin: You also have got to look for hidden painful medical problems, like acid reflux, heartburn, constipation, urinary tract infections, toothaches. You have to rule out a hidden painful medical problem that they cannot tell you about, and I talk about that in a lot more detail in my book The Way I See It.

Tricia Kenney: Yeah, and that’s a very good point, as well. If your child has an issue with lactose intolerance or something, it’s going to make life very difficult for them if you’re giving them milk all day long and they’re in pain, and they can’t tell you.

Temple Grandin: Special diets definitely help some of the kids: things like gluten and wheat-free and dairy-free diets help some kids.

Tricia Kenney: Yeah, definitely. If there are those allergies or if they have intestinal issues, which a lot of the population do—even people who aren’t autistic.

Temple Grandin: That’s right.

Tricia Kenney: And it can run in anybody’s family. I can tell you, my mother had dairy issues; I have dairy issues. It took me almost four years to figure it out, that that’s probably what’s going on with my son, since he’s in so much pain. So I take out the milk, and voila! he’s sleeping through the night.

Temple Grandin: They did say 20 seconds. Are we still on the air?

Tricia Kenney: Oh, yeah, we’re still on. I extended it so that we wouldn’t get cut off.

Temple Grandin: Okay.

Tricia Kenney: But we’ll go ahead and wrap this up, though. I know you’re a very busy woman and you’ve got things to do. Again, I did want to say that I appreciate you coming on and talking about this, because I think it’s so important for autistic people to share what they’ve experienced, especially in early life, so that parents who are new and going through it right now and maybe just for the past couple years or whatever have somebody who’s been there.

Temple Grandin: Well, I’ve got a lot of sensory issues. I still have problems with touch sensitivity. I can remember the frustration of not being able to talk, and that resulted in temper tantrums. Special diets didn’t really do too much for me, but they really do help some kids, especially some of the kids where they seem to get some language and then they regress. The diets work for some and they don’t for others.

You see, this is the problem on doing studies on these things. Autism is so variable, and I think the diets are probably going to work the best with kids that have gastrointestinal issues.

Tricia Kenney: Yes. Studies have even shown that those can be mistaken for autism.

Temple Grandin: Well, you can get a lot of temper tantrums and things like that that are caused by painful medical problems. There are articles of scientific literature that show that there’s increased incidence of gastrointestinal issues in autism.

Tricia Kenney: Mm. Definitely get those things checked out. Take care of those things. I know it’s hard, especially if you’re on a really tight budget as it is to get specialized foods.

Temple Grandin: Well, actually, you don’t have to get specialized foods. Let’s just look at Mexican, for example. You can do a little easy wheat-free, dairy-free with Mexican. You can use corn tortillas, rice and beans and hamburger meat, and you just leave the cheese off. Now you’ve got a wheat-free, gluten-free diet with regular Mexican stuff that’s very, very cheap. The only reason you need to buy special foods is if you want to eat stuff that looks like wheat products. But you can go Mexican if you can tolerate corn, and usually corn’s better tolerated than the wheat. You can do Mexican just fine, and you leave the cheese off.

Tricia Kenney: Right.

Temple Grandin: And then there’s some kids you can put the dairy back in as cheese or yogurt, but you have to keep the wheat out. But Mexican’s actually really easy to do. It doesn’t have to be expensive. You could use rice for your starch, potato. Those are cheap. You don’t have to buy all those special things. You only buy those special things if you want to eat pizza and cookies.

Tricia Kenney: And sandwiches, yeah. [Laughter]

Temple Grandin: Rice and potatoes are cheap. Dirt cheap. And that’s on the diet: you use hamburger meat. All your fruits and veggies. You can just buy frozen peas and things like that. It can be done economically.

Tricia Kenney: Right. And I’ve found, a lot of kids—at least mine—don’t like their vegetables and fruits to be cooked or canned. They like them cold and crunchy.

Temple Grandin: Well, do cold and crunchy, then. [Unknown]

Tricia Kenney: Right, and that’s even easier and better for them to begin with, because it’s not processed. You just give them raw carrots, they’re happy. You don’t have to go through all that trouble. But again, it depends on your child. You might have texture issues and whatever with their eating habits, so again, it varies, child to child.

Temple Grandin: That’s right. It does.

Tricia Kenney: But again, I think it’s wonderful when we have autistic adults sharing their own experiences, what they’ve gone through, and try to help out those who are going through it now. Really, all we have to go on is what the doctor tells us, and it might not be a great doctor. [Laughter]

Temple Grandin: Well, that’s the problem. And the thing is, there are a lot of people out there selling a lot of stuff. I don’t want to sound like I’m selling my books, but I do think they’re good sources of information and they’re Thinking in Pictures, and then the other one is called The Way I See It

Tricia Kenney: Right. Well, I do want to hank you again for being here, and good luck with everything this coming year. I know it’ll be hard to top 2010. That was quite a monumental year for you.

Temple Grandin: Claire Danes just did a phenomenal job in the HBO movie. She was just phenomenal. She became me in the ’60s and the ’70s.

Tricia Kenney: Yeah, it was just amazing, and I think everybody who’s seen that movie just loves it. I know people who have absolutely no connection in the autism community who saw it and were just like: “Wow! That was an amazing movie!”

Temple Grandin: It’s up now for three Golden Globes, for best TV miniseries picture; best actress for Claire Danes, and best supporting actor, David Stratham.

Tricia Kenney: Let’s cross our fingers. I hope they win.

Temple Grandin: Yeah.

Tricia Kenney: It was just so wonderful that we had a mainstream movie come out like that. It let people know that we’re here. [Laughter]

Temple Grandin: That’s right. And the autism is depicted very accurately in the movie. The autism is depicted accurately; my sensory problems are accurate. All my projects were recreated accurately, and it shows visual thinking, how I think. The word “shoe” is said and a bunch of shoes flash up in succession. It’s very clinically accurate. Now, there were some events that were changed around, but in terms of clinical accuracy, we were very, very fussy about that. Emily Gerson Saines, the producer, is the mother of an autistic child and she wanted to make sure it was right.

Tricia Kenney: Right. And I think that’s something that a lot of people don’t get when they hear the word “autism” or they get that diagnosis for their child or something. They don’t get that clinical part or that part where you’re showing how the brain is processing, how the autistic brain works, and that rapid succession of firings that go on with every little association.

Temple Grandin: Well, the other thing, people on the spectrum and with a lot of different disorders have problems with multitasking. I’m definitely one of those.

Tricia Kenney: [Laughter] Yep. Yeah, and it’s not the end of the world.

Temple Grandin: No, it’s not.

Tricia Kenney: I think you’ve done fairly well, regardless. Definitely an inspiration. I think you’re quite the example when we talk about potential in your children. Not everybody’s going to do everything that you’ve done.

Temple Grandin: No, of course not.

Tricia Kenney: You’re an extraordinary example, but it should motivate people.

Temple Grandin: Yeah, that’s right.

Tricia Kenney: I hope that it motivates people to say: “Hey, I don’t have to hang up my shoes right now. I think we can still keep going. There’s still a chance,” because there is. Every person is capable of learning.

Temple Grandin: That’s right.

Tricia Kenney: Again, thank you so much for being here today.

Temple Grandin: All right.

Tricia Kenney: And good luck to you in the new year.

Temple Grandin: Well, thank you so much for having me.

Tricia Kenney: All right. You take care now.

Temple Grandin: Okay, I will. Yeah, bye.

Tricia Kenney: Bye-bye.

[Temple hangs up]

Okay, well that was really great. I hope that this has given everyone out there a little bit of hope and inspiration. It hopefully answered some questions as to what you can work on with your children. You don’t need to extinguish their interests or the thing that you feel they are obsessed with. You can actually utilize those things into a very successful life for your child. So I’m just so thrilled that Temple was with us today. So thank you everyone who listened in, and be sure to listen in for our New Year show on the 31, and we’ll be going over the past year. That will be on December 31. All right. Thank you. Bye-bye.

[End]

This is a transcript of Autism Women’s Network’s interview with Melissa Mooney, a woman with AS who witnessed child abuse while student teaching and has been attacked for reporting it.

[Music]

Sharon daVanport: Good day, and welcome to AWN radio. We are the Autism Women’s Network on Blogtalk. I am your host, Sharon daVanpor, and I’d like to thank all of you for joining us on this special Thursday edition of AWN radio. Today is December 23, 2010, and our guest for today, Melissa Mooney, will be joining us in just a couple of minutes. I have just a few quick announcements. AWN radio will be back this coming Monday at our regularly scheduled time. Our guest will be Temple Grandin. We’re happy to have Temple back on the show with us, and this time, she will be discussing harnessing the power within your child by tapping into their full potential. So we look forward to having Temple back on the show again.

Lastly, we will not be opening up the phone lines today for incoming calls or have the chat room up. AWN radio decided after speaking to our guest Melissa’s attorney, along with taking into consideration the uncalled for opposition that she has faced after coming forward and reporting the child abuse, she states that she witnessed that it would indeed be best for all parties involved if we followed the suggested protocol.

Our guest today, Melissa Mooney, was a student teacher doing her internship when she reported abuse going on in the school where she was earning her credit hours. Instead of Melissa being appreciated for her bravery in coming forward, she was instead ruthlessly attacked, accused of lying. Comments she made years ago were taken out of context, and attempts to use these statements against her have been ongoing. Melissa’s an adult diagnosed with Asperger’s Syndrome, and Melissa further states that her credibility has been called into question, as a form of attempting to discredit her by those whom she reported for abusing disabled students. So I’d like for all of you to join me in welcoming to AWN radio Melissa Mooney. Welcome to the show, Melissa.

Melissa Mooney: Hi.

Sharon daVanport: Hi. Thank you for being with us today. First of all, Melissa, before we actually get into what happened during your internship, perhaps you could speak to what’s going on currently in your life. I know that you’re involved in what you say is a really awesome program for adults with autism at your college, is that correct?

Melissa Mooney: Yeah. I recently discovered a program called the Center for Adults with Autism, and it has made a humongous difference in my life.
It’s provided great support, great socialization and activities, and it’s just wonderful. I really enjoy taking part in that every week or every couple weeks.

Sharon daVanport: Okay. So is it a support group that you actually attend, then?

Melissa Mooney: Yeah. It has a combination of things. It has a social group, where we play games and stuff. It has a group specifically for women on the spectrum, and it has little classes, such as socialization and communication building, and [adventure?] pursuits, which is like a [unknown] course. It really helps people reach their potential.

Sharon daVanport: Oh, that sounds really nice. That’s really good. And you also shared with me last week that you’re currently doing some outpatient care at John Hopkins?

Melissa Mooney: Yes. I have a wonderful team at Johns Hopkins. I go there to talk to a counselor and then I have an excellent occupational therapist, and we do a lot of activities for that. Since beginning professional life, I really stepped things up there, and it’s been very beneficial to be in that kind of treatment.

Sharon daVanport: Oh, that’s nice. Academically and socially, it seems like you must have a lot of strengths, Melissa, to be able to just multitask and do some of the things that you’re doing. If you had to name some of your strengths academically and socially, what would you say those are?

Melissa Mooney: Well, obviously, working with children and especially children with special needs. When I was a kid, I always hung out with kids younger than me because I liked to help them. In high school I was always elected to mentor fellow classmates who had disabilities.

Sharon daVanport: Okay.

Melissa Mooney: I love helping people. I love to give advice when someone’s having difficulty with something. I can’t really say that I have many other social strengths. I do struggle socially. But academically, I love school. And since receiving proper understanding way back in high school, I’ve made honors and Dean’s Lists, and I just love learning.

Sharon daVanport: Oh, that’s awesome. It’s really great, Melissa. So what are some of the reasons why you chose going into education as a choice for your career?

Melissa Mooney: Even though I worked well with children in the past, I began pursuing a medical career at first, because I really love medicine and relative sciences. However, I started volunteering at local schools and discovrered that I worked well with children who were struggling from one thing or another. Once I started pursuing education, I was faced with skeptics who said: “How can someone who is disabled truly help others who are disabled? It’s the blind leading the blind,” etc.

But then I watched a lecture given by Temple Grandin which really inspired me, and I sent her an e-mail. She helped me to realize that there is no better person to help children on the spectrum and adults who are on the spectrum because of the firsthand experiences and understanding. Ever since then, I’ve known that this is my calling.

Sharon daVanport: I understand that. I can relate as a parent, personally, to what you just shared with all of us. I’ve been told by the professional in the life of my child who’s on the spectrum that there’s a definite connection that is witnessed between my child and myself, with me being on the spectrum and my child being on the spectrum. There is just a definite connection that you have. It’s like an unspoken, kindred connection. You get it. I can see where you’d really flow very well, especially because you naturally work well with children, like you said.

Let’s talk a little bit about your internship, so we can lead up to what was going on. Tell us a bit about why you chose this particular school to do your internship.

Melissa Mooney: Well, interns don’t really pick their placement. They’re assigned to the placement.

Sharon daVanport: Oh, okay.

Melissa Mooney: And I was assigned to a public elementary middle school in Baltimore City, and [unkown] classroom of three year olds, and the morning class was all autism and the afternoon class was mixed disabilities with autism.

Sharon daVanport: Okay. You started this immediately during the fall semester. Is that correct?

Melissa Mooney: We did about a week of orientation at the elementary school, getting used to the school and how they do things. The actual internship working with the children came the week after that.

Sharon daVanport: Okay, all right. So let’s go ahead and get on into some of these allegations then, Melissa, so that you can kind of paint a picture and explain to everyone exactly what it is that you began to witness. Start wherever you want, wherever you feel comfortable.

Melissa Mooney: Well, if a child lost focus, which is common in three year olds anyway, but if they lost focus or turned around during carpet time, the teacher would yank at them, pull them around and shout in their face. This would just go on repeatedly until she was actually picking them up by their wrists off the ground and really shoving them hard into the carpet. I don’t mean picking them up to replace them in their spot; I mean being really rough. The longer time went on, the more rough she got. It got to the point where she was manhandling out of anger and frustration. You could seee the anger and frustration on her face.

We did a lot of sorting activities and she worked one at a time. While she worked one at a time, other students became restless. Again, this is typical of any three year old. But when the students did get restless or turned around in their chair, she would shout at them again. One particular boy who kept standing up, he wasn’t going out into the classroom. He was just standing up, and she kept shoving him back into his chair. I don’t mean lightly; she was pushing him, and I was actually afraid that the chair was going to tip over.

Sharon daVanport: Wow.

Melissa Mooney: And then after a while, she got so angry she hit him on the top of his head. And I don’t mean tapped—she hit him on the top of his head. It was upsetting to watch. I myself had trouble not crying when I saw that. But she yelled over and over at the kids and was losing control. Another boy would echo her, and I’m not sure if it was his disability, but the parent later told me he does do that, after a while. She shouted at him, too, got in his face and would shout: “You’d better stop repeating what I say.”

Sharon daVanport: The teacher would say that? She would say that to a little boy? She would say to him when he would repeat her: “You’d better stop repeating what I say”? She demanded that he stop?

Melissa Mooney: Yes.

Sharon daVanport: Wow.

Melissa Mooney: And I mean in his face and yelled. I don’t mean told him. Red in the face, gritting her teeth, got in his face and yelled it. I was scared. And the same little boy would start playing with toys, because she was using toys to do these sorting activities and these kids want to play with the toys. So he was reaching for the toys, and so she took her hand and just jabbed him hard into the shoulder. He has cerebral palsy on one side of his body, so obviously, it really upset him.

Another time, she was using a little doll. It was a bear with red eyes. It was creepy and she was using it for an activity, and the little boy was terrified, terrified: ran across the room crying, and so she threw it at him.

Sharon daVanport: Oh, my goodness.

Melissa Mooney: One of the little girls who had autism, she was always asking for juice. The little girl was overweight and the teacher would always comment about it, saying she doesn’t need juice. But the little girl just kept saying: “Juice,” and so at lunchtime the teacher took the little girl’s lunchbox and put it directly out of reach when she was in a restraining chair and said: “Now what are you going to do?” And just left it there. So she was trying to get it and she just sat back, laughing.

Sharon daVanport: Before you go on, I’m interested in hearing…You said that the little girl was in a restraining chair? The teacher put her in a restraining chair?

Melissa Mooney: Yes. Every single day. This little girl had autism and she stimmed a lot, she couldn’t sit still, and there were times I said, “Put the weighted vest on her.” That would help when she was wearing the weighted vest, but the teacher didn’t want to do any of that. She would immediately go to the restraining chair because she was angry and wanted to get the child out of her hair, it seemed. And she left the little girl in that chair the entire class time—would set her off to the side and not let her partake in activities, which was sad. Even if you’re going to put her in that chair, at least give her something to do.

Sharon daVanport: Right.

Melissa Mooney: But she would just leave her there. It wasn’t necessary, in my opinion.

Sharon daVanport: Right. And I didn’t mean to interrupt you. You were also going to go on and tell about another incident, after you had mentioned about the juice.

Melissa Mooney: Yeah. The one incident that scared me the most was, we were doing carpet time and there was a little girl who the teacher said they suspected she had an intellectual disability. Even simple commands, she just looked and didn’t seem to register what you were saying to her. So the little girl just kept standing up and trying to move away sometimes after a while. And of course she would get dragged across the carpet and yelled at. And then after a while, the teacher kicked her in the abdomen. The little girl stood up in front of the teacher and the teacher just kicked her right in the abdomen and knocked her backwards.

Sharon daVanport: Oh, my goodness.

Melissa Mooney: I don’t mean lightly put her foot, pressed it down. I mean kicked her and got very red in the face—just really angry. So the little girl, of course, became really sad and was just fidgeting with her shoes for the rest of the time. The teacher got angry at that, too, and grabbed the little girl’s shoes and threw them against the wall.

Sharon daVanport: Oh, my gosh.

Melissa Mooney: Then after the carpet time, it was lunchtime, and [the teacher,] knowing that the little girl might have an intellectual disability, said to her: “Put your shoes on yourself, or you’re not getting lunch.” So the little girl just sat there while everybody else ate lunch.

Sharon daVanport: And she denied her food?

Melissa Mooney: Yes. It was extremely upsetting to see. The little girl couldn’t put her shoes on. A lot of three year olds…they weren’t velcro, they were shoelaces. So it was upsetting.

Sharon daVanport: Now, Melissa, you’re seeing all of this stuff happen, all within what? The firt day? You’re seeing all this stuff happen the first day or two? Did you approach the teacher herself? Did you go to her and say anything to her about what you were observing, and how it upset you?

Melissa Mooney: I was specifically directed…Even before the internship, we were told by professors in our college not to confront any teacher. If we disagree with something or see something we don’t agree with, to come to our supervisor at the college and bring it up to them instead. And also, I’m not a confrontational person. I was very upset, but I really didn’t want a confrontation. I myself was scared of this womna. So immediately after I left my internship, I went straight to the college and reported it to them.

Sharon daVanport: Okay. So you went through the right channels that you were directed to through the college and reported it.

Melissa Mooney: Yeah.

Sharon daVanport: Okay. Now, before we move on to the fallout that you’ve experienced, is there anything else you wanted to share with us about any other instances, or is that about it? At least for what you wanted to report?

Melissa Mooney: Yeah, pretty much.

Sharon daVanport: Okay, okay. So let’s move on now. You made the report then at the college, like you were told, to go through those channels, so you did. When you did, can you tell us after the report what happened next?

Melissa Mooney: Well, obviously not what I thought. The first thing that happened, I was pulled into my department chair’s office with my intern supervisor from the college. I was accused of misinterpreting what happened. They said: “Well, your inexperienced, so maybe you’re not familiar with therapeutic strategies.” They just were very disbelieving. I promised that what I witnessed couldn’t be misinterpreted. It wasn’t therapeutic at all.

A week or so later, the dean of education had a meeting with me and my department chair, and he said he didn’t want me to further involve myself in the investigation. He said that I might contaminate it, and that even if my intentions weren’t to make the college look bad, that it would still make them look bad. I continued to tell him: “I thought that the safety of the children was more important was more important.” He started yelling at me and pointing a finger, saying: “How dare you accuse me of not caring?” which wasn’t what I said at all. But a very intimidating meeting.

He continued to then try to scare me by saying: “That teacher could come back and sue you; you’ll lose your career.” It was a very difficult meeting to have. He told me that my internship would be suspended, and that he wanted more details regarding my Asperger’s to determine whether or not I could function as an intern, which had never been an issue until this controversy. But just to appease them because my career’s important to me, I still allowed them to contact my treatment team at Johns Hopkins, because I’m confident and they’re confident that I’m perfectly fine in the classroom.

Sharon daVanport: Right.

Melissa Mooney: At the end of this meeting, I specifically asked my department chair if I would get back into an internship, so that I wouldn’t lose too many hours. She assured me that I would be placed in a school before the semester was over, so that I wouldn’t miss too many hours. But after that meeting, I was ignored by the department and given the cold shoulder. I was never placed back into an internship, so now, even if they keep me in the program, which I highly doubt they will, I would still have to take another year of school to meet state requirements for student teaching hours.

Sharon daVanport: Okay. So now, during the first meeting that you had, where they questioned and they asked for information about your Asperger’s Syndrome, was that the first indication that you were given that you knew: “Okay, now they’re starting to show signs that they’re going to attempt to discredit me because of my Asperger’s.” Is that when you actually started thinking that way? Was that at that time, when you did? Or was there any other reason before that that you were given that they might be doing this?

Melissa Mooney: No. It was at that meeting that it really alarmed me. I immediately asked myself in my mind: What does this have to do with what happened in that classroom? What does my diagnosis have to do with what that teacher was doing to those children? It was completely irrelevant, so I had to think to myself: “What is their motivation for this to suddenly be a problem? All these professors know me. I’ve been in the school for a while, getting good grades, supported by teachers. And all of a sudden, they’re using my diagnosis to say: “We’re going to have to look into whether you can pull this off or not—whether you’re appropriate for this program.”

Sharon daVanport: Oh.

Melissa Mooney: It’s never been an issue before.

Sharon daVanport: Do you feel confident that your team at Johns Hopkins was able to step up to the plate and advocate for you on your behalf, and assure them that you were indeed competent in your internship and they were behind you? Do you feel that that was handled to your satisfaction?

Melissa Mooney: To my satisfaction at this point. Initially, I allowed them to speak to a particular person over at Johns Hopkins, but ever since then, I really haven’t gotten Johns Hopkins as involved in that—asking them to advocate for me, or get involved in the controversy at this point. With the people from the university working against me rather than with me, I’m not sure how helpful it would be for them to advocate for me. I don’t think right now it will make a difference.

Sharon daVanport: Right. So let’s continue on with this. Before we go any further, I would just like for your to share with our listeners: Is this teacher still at the school? This particular teacher that you reported?

Melissa Mooney: From what I understand, she’s on temporary administrative leave. But with everything that the school investigators are doing to sweep this under the rug, so to speak, I think she will most likely return to the classroom.

Sharon daVanport: Wow.

Melissa Mooney: The city closed the case without even questioning me, a witness. They simply came up with whatever they could to defame my character and set it to the parents and teachers to make me look like a liar and to protect the teacher. I’ve been told by a couple of parents these things that they’ve been doing behind my back and all these things, and it’s just really disturbing. Their motivation is to protect themselves and their reputation instead of really protecting these chidren and doing a proper investigation.

Sharon daVanport: Right. What are some of the things, Melissa, that you’re able to share with us that have been done to try to discredit you or defame your character?

Melissa Mooney: Well, in the past, because I did go through a foster care system, I was in a placement called Chesapeake Youth Center, and there was a lot of severe abuse going on there. You can Google this; the place was shut down and sued by the federal government. I had discussed openly in a public forum about my experiences there, what I had witnessed.

And what the city investigators did was they took it out of context and twisted it around, sent it to the parents and said: “Look. She just seeks out conflict.” They didn’t tell them anything about Chesapeake Youth Center, that it was indeed closed. They just made it look like I was attention-seeking. Something I had written in a forum to help other people who had been through hard times, I had written that when I was a child, when I was faced with hardship, where people who were hurting me or something or mean to me, I didn’t trust them. I stopped trusting people and would just go along with things. Not necessarily lie, but I wasn’t honest. I was a very small child, just trying to get along.

So they took that, chopped it up to make it look like an admission of being a liar of some sort and sent that to the parents. It’s not even relevant at all. I was just talking. That’s typical of any kid who goes through a rough time, where they’re afraid of other people’s reactions. They’re going to protect themselves; they’re going to defend themselves when they don’t have that trust.

I was speaking about 20 years ago. I was never speaking about now. I have no reason to be dishonest about this. I’ve no way of coming up with this in my own mind, and putting my career completely on the line. Why would I do that?

Sharon daVanport: Right. Are you able to name the school? I know you can’t name names. You’ve chosen not to name names, and that’s fine. We totally respect that, that your attorney’s asked you not to do that. Are you able to give the name of the school, or have you been asked not to do that at this point?

Melissa Mooney: I’ve been asked not to do that.

Sharon daVanport: Okay. Okay. That’s fair enough. I wanted to ask you at this point: You were saying that they took these comments from 15-20 years ago, where you were trying to explain as a very young child what you did to protect yourself from people who you were in fear of, to the point where you admitted that you would just go along with things to the point of being some might say dishonest. But you were a tiny child at that time. Now, is it the school that was using these comments and giving these comments out of context to parents? Or was it the city attorney? I thought that you might’ve said it was the city attorney. I can’t remember.

Melissa Mooney: It was not a city attorney. The way the parents put it was that it was a city investigator they think was from the school board. I haven’t got the clarification of whether it was Baltimore City Child Protective Services or the school system. But either way, the case was closed.

Sharon daVanport: Okay, okay. So now you’ve got these comments to deal with and you’ve got parents being told some of this stuff. How is that going with you, Melissa, when it comes to the parents? Have there been any parents that have reached out to you personally that are taking what hyou said into serious consideration? How is that going?

Melissa Mooney: Yes. I had one parent who contacted me immediately, because she said her son had been exhibiting signs of abuse since the first day of school. But then again, I’ve had another parent who contacted me, but she said based on what the principal of that elementary middle school had told her, she didn’t believe it at first. She said that the principal told her that I was mentally deficient because of my Asperger’s, I was making it up, etc. and not to believe [me].

They have, from the beginning, separated me from the parents and the parents who have talked to me said my story isn’t what they told them. The principal, according to them, didn’t tell them everything and made it out to them that it was only their child. They didn’t tell them that I witnessed this with all the children in the classroom setting. They said that everything was twisted and backwards from my testimony—what I witnessed—obviously to protect themselves.

Sharon daVanport: Right.

Melissa Mooney: Of course I have parents all over the country contacting me, telling me stories about similar things that happened to them or their children, or adults on the autism spectrum who say: “Yeah, that happened to me, and this is a problem.” I had no idea just what a problem this is.

Sharon daVanport: Yeah, that something can be used against you that’s not even relevant in that context. It’s just unbelievable, what you’ve been through. I’m just curious: You said that a parent did contact you and she commented that her son had been showing signs of abuse from day one. Was it the boy that you were referring to earlier, when you were talking about different things that you had witnessed? Was it indeed one of the children that you had seen abused?

Melissa Mooney: Well, yeah.

Sharon daVanport: Really? Oh.

Melissa Mooney: I had seen four or five children abused, but this one in particular was the little boy who had cerebral palsy and was jabbed in the shoulder and screamed at and had things thrown at him, like the dolls and things. She told me that he had always loved school and going there, but then after starting with this teacher, he would be terrified of going to school. She said he had physical signs. So it’s kinda sad.

Sharon daVanport: Right. Yeah, it really is, Melissa, and I just want to say to you and commend you for being a strong individual, and being able to do the right thing. You did the right thing, down to the very point that you even went through the channels that you were instructed to do and reported it to your college first. You went down the very line of accuracy, down to what you ere told to do. It’s just rfeally sad to hear this backlash that you’ve been experiencing.

Getting back to your internship, you said earlier that you were told that you would be placed back in another school setting for your internship, and that hasn’t happened. You’re not even sure if you’re going to be able to stay in this program. You’ve not received any answers at all, one way or the other?

Melissa Mooney: No. Not at all.

Sharon daVanport: Not at all. And so you basically don’t even know what’s going to happen this next semester, after the first of the year yet? Or have you been told when you’re going to find out?

Melissa Mooney: Well, I absolutely will not be in an internship during the spring. The way it works is you do a part-time internship in the fall, and then spring’s for full-time student teaching. So without being in a part-time internship this fall, I won’t be able to do an internship in the spring, which is why I would end up having to take a whole other year of full-time college to restart the internship, if they kept me. But I can only assume by their need to dig for negative things about me that they do not plan on keeping me in this program.

Sharon daVanport: Well, you’ve got an attorney now. Hopefully they’re going to be able to do something. I hope they will, Melissa. I hope that you’re going to be able to be protected and your education isn’t going to suffer for this. I just worry about the children, too. At least right now, at this point, the teacher is on administrative leave, as far as you know. What is your hope that will come out of this, from you coming forward and reporting all this? What do you hope’s going to happen, Melissa?

Melissa Mooney: First of all, I hope for the safety of those children. Anyone who works with children who are disabled knows that early intervention is more important than anything. And so to start off the intervention mistreating the children, I just think that has to somewhat be devastating and a setback for them. But no child should be treated that way, ever. So I really hope that those children will be protected.

My second concern is getting my career back. I’m extremely afraid that this is it. I’ve been told that at my college, when someone’s removed from the education program, they put something on your record in case you transfer that says they don’t recommend acceptance into any other educational program.

Sharon daVanport: Oh, my.

Melissa Mooney: So I’m really afraid, because this is my calling and I’ve worked extremely hard and overcome so much to get to this point to help these kids and find my place. It is my place. To have that all thrown away because I did the right thing…It is my job to protect children, no matter what. So I was doing my job, and now I might lose my job because of it. That’s my concern also.

Sharon daVanport: Right. Never is there any reason to ever…whether it’s for your career or not, never is there ever a reason not to come forward. You absolutely did the right thing to report what you saw, Melissa. It was the right thing to do. I commend you for that. I personally commend you for having the strength and the bravery to come forward to do that.

I can’t imagine what kind of emotional fallout that you’ve paid after reporting this. You are on the spectrum, so being that you’re on the spectrum, I’m sure that your sensory code is much more heightened in some areas. How has that been like? Why don’t you describe for us some of the fallout that you’ve experienced?

Melissa Mooney: Well, [unknown] it’s been extremely difficult. You can’t imagine how hard I’ve worked to get to this point and overcome so much to chase this calling, and to pursue this purpose. Growing up, so many people doubted me. They didn’t even think I would go to college, let alone be on Dean’s Lists and have honors and get to my internship. Again, now my career in helping children on the spectrum could be completely destroyed, and that is devastating to me. That is completely devastating to me, because of my devotion to this. Being right at the finish line, ready to make it and then having this happen.

Also, school has always been a haven for me, like college. I love taking classes and learning new things. Most of my teachers were supportive of me, and I flourished in academic settings. I loved it. But now I have the cold shoulder; none of my teachers support me, and I honestly dread having to show up on campus because it hurts so much. I am suddenly the campus pariah. That hurts me a lot. My peers are resentful, because they don’t want me to make the school look bad. They’ve shunned me, and at some points have been straight up mean to me. With the social difficulties I already have, that’s been hurtful, too.

Sharon daVanport: [sadly] Oh.

Melissa Mooney: Because I did the right thing, it’s hard to reconcile in my mind that you do the right thing and get still punished for it. But I’m not the bad guy here. Yeah, it’s definitely taken a toll on me mentally.

Sharon daVanport: Right. And I just commend you so much, Melissa, for pushing forward and staying with your classes. You’ve still attended all your classes, haven’t you?

Melissa Mooney: Just about all of them. I was a little sick a couple days, but other than that, yes. I attended all my classes and worked very hard to complete assignments. Yes.

Sharon daVanport: Very good, very good. Well, I know that we were limited on the questions. We worked with your attorney on AWN radio to make sure we would be able to have you on as a guest, to have you share with the autism community and special needs community and just anyone and everyone who wants to hear this story exactly what happened, and hear your side of it. Is there anything, Melissa, before we say our goodbyes on this special Thursday edition that you’d like to share with our listeners? Was there anything that we left out? Anything you’d like to say?

Melissa Mooney: Well, I definitely want to thank you and the people who have supported me. When this first started happening, it happened so fast, just this whirlwind of events happening, and I felt very alone and very hurt and scared. I had never expected this to happen. But the support that I’ve received and people telling me their stories, that has helped me to continue with this, and helped me to carry on with it instead of hiding from it or letting them sweep it under the rug.

So I thank everyone who’s done that for me. And I really hope that something good comes of this, because it sets a bad example for teachers everywhere, interns everywhere, when someone steps forward and is then so publicly punished. I’m afraid for that, and I just hope people out there don’t get scared by this. Always report what you see, because it be such a detriment to these kinds of experiences. So, yeah, I thank you very much.

Sharon daVanport: Well, you’re quite welcome, Melissa, and I thank you for coming on the show today and sharing your story. In closing, would you like to share with everyone your YouTube URL so that they could go over there? You’ve got a few videos up about this. What is your YouTube?

Melissa Mooney: I don’t know the specific URL, but my profile name is motleyprism.

Sharon daVanport: Any of our listeners can go over there to YouTube and look up Melissa’s channel and see a couple of the videos that she’s posted over there about that. Well, listen, Melissa, I just want to thank you again. You take care, and we will definitely be in touch and follow up with you and see how this story plays out, all right?

Melissa Mooney: Okay. Thank you so much.

Sharon daVanport: You’re welcome, Melissa. Have a wonderful holiday.

Melissa Mooney: You, too.

Sharon daVanport: Okay. Bye-bye.

[Melissa hangs up].

Okay, everyone. That’s going to do it for us today on this special edition of AWN radio, the Autism Women’s Network on Blogtalk. I want to thank all of you for joining us today on the switchboard and on the Internet through streaming live. I want to remind everyone that we will be back in just a few days after Christmas on Monday, and joining us will be Temple Grandin. So we thank you again for joining us today, and we will be talking to everyone on Monday. Thank you. Bye.

[End]

[Music]

Sharon daVanport: Good day, everyone, and welcome to AWN radio. We are the Autism Women’s Network on Blogtalk. I am your host, Sharon daVanport and today is Monday, December 20, 2010. Joining me now is our co-host, Tricia Kenney.

Tricia Kenney: Hi, Sharon.

Sharon daVanport: How are you doing today?

Tricia Kenney: I’m doing really well. How are you?

Sharon daVanport: I’m doing well, doing well, yeah.

Tricia Kenney: Getting ready for Christmas?

Sharon daVanport: Just getting ready for the holiday week.

Tricia Kenney: Yeah.

Sharon daVanport: I know. [Laughter] We’re a sensory-friendly family around here, so we’re keeping things really low-key. We’ve learned through the years it’s really a great thing to head off that spectacular celebration with a very low-key week leading up to it, so the day isn’t totally a disaster. There’s so much to be happy and excited about, so I’ve learned to just do that with my kiddo and myself, and it works out really well.

Tricia Kenney: Yeah. There is a lot of pressure. I know everybody’s feeling the pinch right now, because we’re so close. Everybody’s got cooking and wrapping and houses to prepare for guests. Oh, the pressure, the pressure. Fortunately, I’m not hosting anything at my house. I’m baking a lot of cookies, but I’m taking them away with me.

Sharon daVanport: Oh, that’s right. You did cookies this year. That’s right. You were telling me about that. That’s so nice. I wish I was at your house eating all the cookies, Trish.

Tricia Kenney: [Chuckles] I know.

Sharon daVanport: We’ve got a few quick announcements, Tricia, before we get started. I wanted to let everybody know a couple of things just really quick before we bring on our guest for today, Dana Commandatore of RethinkingAutism.com. First, AWN radio will be broadcasting a special Thursday edition this week. Our guest will be Melissa Mooney.

Many of you probably recognize Melissa’s name from the video she recently made. Melissa was a student teacher doing her internship when she reported child abuse going on in the school where she was earning her credit hours. Instead of Melissa being appreciated for her bravery, she was instead ruthlessly attacked online, in person (not meaning physically, but attacked verbally), being accused of lying, saying that the comments she made years ago, which were taken out of context, what they were saying should discredit her.

Melissa is an adult on the autism spectrum, diagnosed with Asperger’s, and she further states that her credibility was called into question by not only discrediting her because she’s on the autism spectrum, but just by saying suddenly she wasn’t doing what she needed to be doing. Just unbelievable stuff. I don’t want to get into the details of it, because I’d rather have Melissa come on and be able to tell her story on Thurstday. But again, that’s going to be on Thursday, December 23. The showtimes will be one PM Eastern, noon Central. I believe that’s going to be 10 AM Pacific. So that should be interesting, Tricia.

Tricia Kenney: Yeah. That is just an incredible story. We hear a lot of adults on the spectrum who don’t disclose on the job and in a school setting when they’re adults, and it’s sad.

Sharon daVanport: Right.

Tricia Kenney: It’s sad that you shouldn’t be able to get accommodations if you need them because something like this might happen, and I think it’s really great that we’re going to be bringing this to light. I think it’s a really important subject.

Sharon daVanport: It really is; it really is. You’ll just have to tune in to hear what she has to say. I visited with her myself on the phone last week. I’d spoken to her attorney a couple of times before, but finally when he put us in touch with her, I couldn’t believe what she told me. These are things she’s going to be able to actually share with us and with our listeners, so I just hope everybody can join us, and if not, later. You know you can just go to our page and lisen to the podcast.

Tricia Kenney: Definitely. And the second thing we wanted to bring up today is our radio sponsor, LifePROTEKT, they provide a lucky listener every month with a GPS locator and one year of service, and we do a drawing every month through our radio show. But right now we’re going to put it on hold. We’re doing some updates and upgrades with that program, so that’s going to be over the next few weeks. We’re just going to put a hold on the prize drawing for now.

We will definitely announce when we will be having the next drawing, so please stay tuned for that. You can still continue to send in your entries for the contest. We haven’t stopped it; we’re just putting it on hold for now until those upgrades are done. So if you do know anyone with a child or if you yourself have a child who can benefit from this device for wandering, just submit your story to us at info AT autismwomensnetwork DOT org and you’ll be entered.

Sharon daVanport: Absolutely. And we’re just happy that these upgrades are going on, because we’ve been told that there’s going to be some more accurate GPS device, or…

Tricia Kenney: Stronger battery power and stronger life in it, and they’ll be able to search out futher distances and all that stuff. So, good stuff, definitely.

Sharon daVanport: Right. And then lastly, we wanted to mention our weekly radio show for next week on Monday, December 27. We will be welcoming back to the show Temple Grandin. We’re happy to have temple back to discuss next week harnessing the power within your child by tapping into their full potential. So join us next Monday for that.

Tricia Kenney: Yep, it should be really good. It’s always good to talk with Temple. She’s just done so much amazing work.

Sharon daVanport: Right; right. Okay. Well, with that said, I’d like to welcome back to AWN radio a very special guest and a friend of ours, Dana Commandatore. Welcome back to the show, Dana.

Dana Commandatore: Hi. How are you guys?

Tricia Kenney: Good. How are you?

Dana Commandatore: I am good. I am in southern California where it’s been raining forever and will continue.

Sharon daVanport: Right. [Chuckles]

Tricia Kenney: Yeah. They said there’s going to be some flooding and stuff going on there, so be dry.

Dana Commandatore: I will. We will try. We’ll all try. With my son off from school this week and the dogs home, it’s going to be difficult for my husband, so I wish him luck.

[Laughter]

Sharon daVanport: Yay, Michael!

Dana Commandatore: Yes.

Sharon daVanport: Oh, my goodness.

Dana Commandatore: He is such a good [man?]

Sharon daVanport: Aw.

Tricia Kenney: And clean shaven again, I hear.

Dana Commandatore: Yes, he is clean shaven again. After the month of November, where he grew a moustace to raise awarness for men’s health issues, he has shaved it off. And I’m grateful. [Laughter]

Sharon daVanport: All right. Okay.

Tricia Kenney: Well, why don’t you tell us a little bit about your background and why you got into the autism community and started making videos. How did you get thrust into all this?

Dana Commandatore: That’s a good choice of words there, Tricia: I got thrust into this. It all started when my son…It was around this time of year, about six years ago, when I found out that my son was autistic. I really had no reference for autism whatsoever. I hadn’t seen Rainman; I hadn’t seen Rainman until about two weeks ago, actually, when it was on TV. Knew nothing about autism. Had heard it before, but was completely ignorant to anything about it, which maybe worked to our benefit. My husband had a cousin who had an autistic child, and that was all we knew about it.

Once he was diagnosed, we just started doing research snd I think I came across a very small group of people that were incredibly helpful and very positive. I just went along that path, and tried to remain as open-minded and positive about the whole situation as we could. And my son was diagnoesd with autism. He’s definitely as most people say middle-of-the-road autistic.

Tricia Kenney: That’s very young for him to have been diagnosed. He’s only, how old? Seven?

Dana Commandatore: He’s eight. No, he’s eight. He just turned eight in November.

Tricia Kenney: So he was very young when he got diagnosed.

Dana Commandatore: He was just two when he was diagnosed, and I think it was very obvious. I did what everybody else does and goes online and looks up the symptoms, and I think every single one was apparent. It was just: “Yes, that’s him; that’s him; that’s him; that’s him.” And there was no doubt in my mind that he was autistic after reading that. His signs I would say were very easy to read, once you knew what you were looking for.

Sharon daVanport: What were some of those, Dana, just so our listeners know what your personal autism experience was with your son?

Dana Commandatore: Well, I can go back as far as when he was about three months old. There was a point where my husband and I were convinced that he was either blind or deaf or both. We never said anything to each other, and then one day we were both like: “Do you think he could be blind? Do you think he could be deaf?” We didn’t think he was tracking things the way we would…Being our only child. He wasn’t tracking our voices or the television that was on or toys a certain way. He was tracking things very differently, so I’m glad to see that they talk about that now a lot as being one of the early signs.

As far as developmental milestones, he met all those, as far as sitting up, crawling, all that stuff, except for speech. That came much, much later. But there was that. There was a lot of what we now call non-purposeful play. I do think it serves a purpose, but it’s just not a typical purpose.

Tricia Kenney: Right; right.

Dana Commandatore: So instead of using crayons to write, he would roll them off a table for a very long time and just watch them fall. He did a lot of things that were just outside the box.

Tricia Kenney: I always thought that stuff was so interesting. When I would see my son do stuff like that, I’m like: “Look what a little scientist he is. He’s learning the different things he can do with that.” It never struck me that every other child didn’t do that. [Laughter] I just thought: “Wow, this kid is just a genius,” when he would look at things in a different way. I was like: “Look at him utilizing his brain!”

Sharon daVanport: Right.

Dana Commandatore: No, it is interesting. One of the things that I find funny is he didn’t develop his lining up obsession until a little bit later in life. But he was more of a chaotic kid. I’d clean up all the toys in his room and he lived in basically a big closet in New York City. We were living there at the time. He had a very small room. We’d clean up all his toys, we’d line everything up, and then we’d leave him in there and come back 45 seconds later and everything would be all over the place. [Chuckles]

Sharon daVanport: Aw. [Laughter]

Dana Commandatore: He loves chaos. Absolutely loves it.

Sharon daVanport: All right. He knows what he likes. That’s okay, Dana. Now, after you found out that your son was diagnosed with autism, was it at that point you said that you met a community of like-minded people who were very positive. When was it that you decided that you really wanted to start speaking out and encouraging more of this positive talk?

Dana Commandatore: Well, that came later. Yeah, that definitely came later. We spent a couple years with him in doing a very modified form of ABA at home and speech therapy, which I think was incredibly invaluable. Getting a good speech therapist early on makes a huge difference.

Sharon daVanport: It did for my son as well, yeah.

Dana Commandatore: Yeah. I think a good speech therapist can naturally work with a child a see what motivates them and figure out a way to communicate. Our speech therapist early on really helped us find other ways of communicating while speech wasn’t always there—wasn’t there really at all, which was very, very helpful. I think figuring out ways to communicate lessens the frustration and the anger in any child or any person. So that’s key. Communication is key, whether it’s verbal or non-verbal, whether it’s through touch or eyesight, if you can pick up on those cues, it’s much easier to form a relationship and motivation.

After we came out of that and I went back to work full-time and he started school, I’d started paying attention a lot more to the world going on around me. That’s when I started hearing in the mainstream media a lot of talk from people like Jenny McCarthy. She would be on Larry King or on Oprah, because I believe her son was diagnosed around the same time my son was. She had a very different experience than I had, or at least was talking about it in a very different way. I’d have people coming up to me when I’d say my son was autistic. In a weird way I was very proud of him whenever I said it, and I was always taken aback when people would look at us and say: “Oh, I’m sorry.”

Tricia Kenney: Yeah.

Dana Commandatore: That sort of thing. I’m like: “No, no. It’s okay.”

[Laughter]

Sharon daVanport: Right.

Dana Commandatore: “You don’t need to be sorry. Please don’t feel sorry for him.”

Tricia Kenney: Umhm.

Dana Commandatore: “It’s okay. We’re fine with this.” So that’s when I started to realize that there needs to be an alternative message that needs to reach across, come out of the autism community, the adult autism community an get into the mainstream media, so that people are not always talking about autism as a tragedy, or as I see in the news a lot these days, “autism threat.”

Tricia Kenney: Yeah.

Sharon daVanport: Right.

Dana Commandatore: Like it’s a terrorist threat.

Sharon daVanport: And Dana, you have a lovely way of explaining this. So explain for our listeners out there who are equating…Some people aren’t stretching their way of thinking and looking at it. When you say: “Don’t feel sorry for my son,” you’re not saying that your son doesn’t have challenges and doesn’t need support. You’re saying what? Why don’t you explain that, because I love the way you explain this?

Dana Commandatore: We’ll see if I can do this. [Laughter] My son has a lot of challenges and they can be debilitating at times and they can really stop him from doing things that he may want to do. His anxiety is severe; he has a lot of trouble with his expressive language. His receptive language is all there. We learned that early on, so we were very careful about what we said in front of him and what others say in front of him. Michaelangelo is an incredibly interesting, funny, caring, sympathetic, loving little boy. He loves my husband and I and needs us. We look at him as somebody who…

[Jim Sinclair in his piece "Don't Mourn for Us" puts it best. I hate to even try to change that or ever claim it's something that I think of. But you've got a child who's here and living with us who does not communicate the way that we do. He needs a guide, and we as parents are trying to guide him towards being as independent and happy as he can as an adult. Whatever that means, we'll see. Only time will tell what that can be.

Tricia Kenney: Right.

Dana Commandatore: But he is who he is. There's no changing that. There's no medicine, there's no diet, there's no strict behavioral plan that will do all that. Most of it comes from a relationship, and we figured that out early on, that we're not going to dramatically try to change him or do anything. We're just going to try to make him as happy and independent as possible.

Sharon daVanport: Right.

Dana Commandatore: The challenges that he faces, we'll figure out ways to overcome them or to deal with them. And hopefully, my goal is for him to either find another person that he could share his life with at some point, if he wants that. But I think all of us do. I think all of us want something or someone to share our lives with, so we're just trying to gear him up and prepare him for that.

Sharon daVanport: Right. So let's fast-forward just a little bit. You've got all this going on with him; you're learning that positive outlook in addressing the challenges as needed. How are you then reaching out to the autism community, and what are you finding at that point, coupled with the stuff that you've already mentioned? What [could?] you really focus on?

Dana Commandatore: Well, what I did was I was fortunate to meet some friends like yourselves and some other adults who are either on the spectrum or are very involved. I noticed that they had so much information that was helpful that nobody else seemed to have.

Tricia Kenney: How did you find autistic adults?

Dana Commandatore: I heard about the ad campaign that was put out a few years ago about the Ransom Notes campaign in New York City. “We have your son. We are going to…”

Tricia Kenney: That’s the one, yeah.

Dana Commandatore: Yes. “He’ll never be able to have friends,” and goes through this whole thing. “Signed, Autism.” And I said to myself: “Oh, my goodness! Who is doing this? How can this happen?” And I ended up contacting the Autistic Self-Advocacy Network because I had seen Ari Ne’eman on Good Morning America. That was a turning point for me; that’s when I realized thta there is a community out there that thinks the way I do, and there’s actually a name to a movement, which wasn’t as important to me as the fact that there were these people there who were like-minded and were fighting for more important things, like quality of life and education, and just things that really were lacking in the autism conversation.

So I decided to use my advertising background, marketing and creative, and my husband and I decided to put together a website that could challenge the conventional ways of thinking, when it came to autism, and try to get people through videos to see that there is a whole other way out there. To a lot of the people that may be listening to this station, people who are just having kids diagnosed, they don’t understand how radical it is to think that autism does not necessarily need to be cured. It needs to be more understood, and what that difference is.

Tricia Kenney: Umhm.

Sharon daVanport: Right.

Tricia Kenney: What I think was really important, too, is that when parents do get a diagnosis, it doesn’t have to be dread. It doesn’t have to be this scary unknown. Their child is not dying.

Dana Commandatore: No. That was something that was said to me right when my son was diagnosed, that really put me on edge. The psychologist handed me a packet of papers and said: “Your son is autistic,” and I said: “Okay, what do we do?” and she said: “Well, you need time to mourn.” And I said: “Well, is he going to die?” And the woman just looked at me. She’s like: “Oh, no!” I’m like: “Well, then what do I need to mourn for? I need to learn and educate myself and move on.” We need to stop presenting autism to newly-diagnosed parents that way. They need to get much more hope and support.

And that’s what is lacking the most, is the support. Chances are, you are going to come across somebody in your family or your close friends that has an autistic child, or you yourself may have one, or you may find yourself diagnosed later in life as being on the spectrum, which happens to a lot of people. You should know something more about it than it’s the worst thing that can happen to you. You need to know that there’s so many interesting, exciting, challenging and things that you can appreciate about autism.

And again, it’s so hard to talk about without stressing the fact that there are challenges and there are very difficult days, but there is that with any child. When you have a child, you’re in there for better or for worse, even more so than a marriage. So you’re going to go get much further by accepting your child, whether they’re good at math or not good at math; whether they’re good at social skills or they’re going to be in diapers their entire life. These are things that you have work around and fit into your life, and accept that they’ve become part of your life. What are you going to do to make your child as happy as they possibly can be? What life skills can you teach them to be independent?

Sharon daVanport: Right. How did you come up with the name Rethinking Autism? I like that: Rethinking Autism.com.

Dana Commandatore: There’s a lot of different names that I came up with,a and they were really long and going through an entire…I sat for a week just writing things out. I still think I have the pad somewhere, all the different names I came up with. “Another Side of Autism” was one of them. I think my husband and I just decided that that made the most sense. We want to make people rethink. “Changing Minds” was another one that we wanted to do. We just wanted people to look at it and readdress or reeducate themselves on a subject that we know very little about, but everybody thinks they know a lot about because they saw a movie once.

Sharon daVanport: Right. [Chuckles] And I like the way you say to rethink autism and changing the autism conversation one video at a time. Tell us about how you got your ideas for the first videos. I know what your first videos were and I absolutely loved them when I came across them: “What? What’s this on my page? Why are these people posting on my page? Oh, my gosh!”

Tricia Kenney: I almost fell out of my chair when I saw those. I’m like: “Is that okay?”

[Laughter]

Dana Commandatore: I will be the first to admit that I get a lot of e-mails from people that love them or hate them.

Sharon daVanport: There’s no in-between with these, are there, Dana?

Dana Commandatore: Yeah. There is no in-between. I made some videos that were to counteract…It came about around Autism Awareness Month two years ago, when Jenny McCarthy was everywhere. Yes, I know Jenny McCarthy does not use sex to talk about autism. However, Jenny McCarthy did use sex to get where she was to talk about autism. [Chuckles] I refused to say: “If I looked like her” or “If anybody who had my viewpoint looked like her and was up there…” We needed a celebrity to talk about a different side, and to talk about a much more positive approach and give people more hope.

Jenny was trying to give people hope, in a sense. She was saying she’s cured her child and gone through all this, but I don’t believe you cure autism. You can have incredible advancements and improvements in your child’s behavior and what happens, but there is no curing and you either weren’t autistic to begin with if you were cured, or you’re not really telling the truth. I have no idea what’s going on with her son. I don’t pretend to. That’s between her and her son. But there is a message getting out there that you can cure autism. You could change a diet, you could do this, and she was telling her story.

And I thought that was not representative of what was happening to families who were really struggling and were trying diets and trying these things and getting no help. So I enlisted a very good friend of mine, Leanne Tweeden. She looked fantastic.

Sharon daVanport: Yeah, she does. [Laughter]

Dana Commandatore: She’s an absolutely beautiful woman inside and out, snd she did this for the cause, and turned a lot of heads and got a lot of people either interested or disgusted. And when you do that, you know you’re doing something right. When they’re really angry with you or really love you, you know you’re touching a nerve.

So that’s how I started. I just got an e-mail two days ago talking about how sick I am and how my child should be taken away from me.

Tricia Kenney: Wow.

Dana Commandatore: Yeah. So [they?] start the video.

Sharon daVanport: Now, we want to make sure we’re telling everybody, this isn’t porn or anything.

Dana Commandatore: No.

Sharon daVanport: We want people to understand that it’s nothing that you haven’t seen on a Victoria’s Secret commercial on TV that your kids don’t sit and watch.

Dana Commandatore: Exactly.

Sharon daVanport: I’m not saying I’m promoting and saying that your kids should watch this.

[Laughter]

It’s not for children. They wouldn’t understand it, yeah.

Dana Commandatore: I have a warning on my website. The first thing it says is: “These videos are not for children.”

Sharon daVanport: Leanne’s a beautiful woman who is getting a message. Go to RethinkingAutism.com and you’ll see these videos. I think they make a good point. I was shocked at first, but not disgusted, and I absolutely love them. I think they’re awesome.

Tricia Kenney: [They're also pretty?] funny.

Dana Commandatore: You have to go into it with a sense of humor. I’m not saying that autism is funny, but if you’re honest, there are certain things that are funny and only people on the spectrum and parents of people on the spectrum can joke about certain things or do certain things. Not that this is making light of anything like that. It’s just trying to shock people and get their attention, and then try to give information that I think is important.

Tricia Kenney: What I was going to say is, when I first showed those videos to my boyfriend, he’s watching it and he’s like: “I don’t get it.” And I’m like: “What?”

[Laughter]

He’s like: “What does that have to do with autism?” I’m like: “Oh, you didn’t see the words.”

[Laughter]

Sharon daVanport: He was watching Leanne, but not the words.

Dana Commandatore: I’m hoping that people watch them over and over again and then all the sudden they realize: “Oh, wait a minute!”

Sharon daVanport: “There are words there!”

[Laughter]

Dana Commandatore: Some of the people that have contacted me, they’re like: “I don’t know how I stumbled across your website. But I love Leanne and have an autistic kid, so thanks.” It’s like: “I know how you stumbled across it.”

[Laughter]

Sharon daVanport: Mike is over in the chat room, and I like a point that he made when we were talking about Rethinking Autism. He said: “You don’t rethink it once and be done with it.” So in other words, tense: “Rethinking Autism.”

Dana Commandatore: Isn’t he good? [Laughter]

Sharon daVanport: He is, yeah. Very good, Mike, very good.

Dana Commandatore: Yeah. He doesn’t get enough credit for all the work that he does. Mike is my editor; he’s keeps me going. He’s such a creative, intelligent and fun person to go on this journey with. He’s just fantastic, and he’s been a huge part of me getting this done. I can’t do anything. I just can find the people that can do it, and Michael is one of those people.

Tricia Kenney: Very good.

Sharon daVanport: Yeah.

Tricia Kenney: So then how does this lean into your following video—the last one that you did?

Dana Commandatore: Because you’re [old?] now, right?

Dana Commandatore: Yes. I did a video called “Autistics Speak” and it came out around the same time as that Autism Speaks video. I forget even the name of it.

Tricia Kenney: I think it’s “I Am Autism.”

Dana Commandatore: “I Am Autism,” that was the one. But I had no idea they were making that, and they just happened to come out around the same time. I made this video. I decided that I would step it up a notch and get some more people involved, and I really wanted to bring autistic adults into the video. My whole plan is to slowly interest the general public and other people who are involved in autism, slowly get their attention.

And I started by using Leanne, and then I moved on and I kept using Leanne. I wanted to incorporate some autistic adults, and I wanted to make something like a mission statement video, where I had important key concepts that people can start to understand. I could introduce the term “neurodiversity” to people who have no idea what I’m talking about.

I got some incredible, incredible talent and friends of mine to help. My husband Michael was in the video, Bill Whittle, Armie Hammer, Elizabeth Chambers, Laura Orrico, Max Martini. These are all people that gave up their time to help get this message out there. And I wanted to mix in autistic adults, but every video I make, I don’t make any money. I don’t accept donations. It’s pure advocacy that I do. There’s enough great groups out there that are trying to raise money. I’m trying to change people’s mindset, so that when they come to donate to autism, they think about who they donate to. Hopefully, they’ll give to a charity that I feel is doing much more positive work, instead of someone who’s trying to eradicate autism from the planet.

So since I didn’t have any money, and from a production standpoint it was very difficult to get autistic people in Los Angeles that knew me, that trusted me, I came up with a creative workaround, where I used voiceovers. That was easy. People could send me their files throughout the country, and that’s what I did. So I have voiceovers from autistic people in the second video, where they give key concepts like: “Society should be more concerned about my quality of life instead of figuring out a way to stop me from being born,” things like that, and celebrating neurodiversity. I love that video.

Tricia Kenney: Yeah.

Dana Commandatore: I think it really does a great job of explaining to people, or introducing a more positive approach to autism.

Sharon daVanport: It really does. It opens up the conversation, exactly like what you say in the video. Opening up the conversation, to just talk about it and to talk about different viewpoints. I like Savannah’s voiceover where Savannah says in the video about: “Why shouldn’t I have a say in laws and
organizations that affect me?”

Dana Commandatore: And research, yep.

Sharon daVanport: Right, “and research that affect me?” That is so spot-on.

Dana Commandatore: It is. And Savannah’s voice was so unbelievably soothing and beautiful. Every time, I love listening to her speak. She really reaches people. My friends Boris and Deeji Zelkin did the music, which I think is absolutely gorgeous. They composed that just for this.

Tricia Kenney: Wow.

Dana Commandatore: Which really, really helps it.

Sharon daVanport: It really did.

Dana Commandatore: Yes. It really just gets you engaged. It’s a difficult thing to do, because I wanted this to be serious and get people to listen to it, but I didn’t want it to be sad. I think it did a great job of not doing that. But it is very emotional. Almost every time when I sit down and I listen to the whole thing, I get very emotional, to this day.

Sharon daVanport: I do, too. No matter how many times I’ve watched it, I cannot watch it without getting that lump in my throat. Something about it: I don’t know if it’s just everything together, the music, the voiceovers of autistic individuals. It’s so powerful.

Tricia Kenney: Right. It is powerful, and it also is a reminder. Every time we watch that, every time we hear it, it’s a reminder of where we need to go, of what we need to do. Every day we read stories to the contrary of that, and it reinforces that when you hear it again. We have a lot of work to do. There’s a lot of people who still don’t get it, and a lot of abuse is still being done.

Sharon daVanport: That’s okay, Trish, because Dana, she’s still on the job, aren’t you, Dana?

Dana Commandatore: Oh, I am not stopping. Jenny McCarthy made a point to say she was going to spend the rest of her life talking about autism to prevent it and stop it and do whatever, and I’m going to do the opposite. I haven’t heard much from her lately, thank goodness. [Chuckling] I am just going to keep going and going and going and going. I’m going to try to reach everybody I possibly can with this message.

I just think it’s so incredibly important, and it affects my son’s life. It’s for selfish reasons and for other reasons. I don’t want him to live in a world where people are afraid of him, don’t get him or understand him, and therefore, that closes opportunities and things in life for him as an adult. I don’t know if he’ll ever be able to hold a full-time job and go out to work every day, but there might be something that he could do from his own home, and if companies don’t start figuring out a way to actively recruit people like this with telecommuting. It can open up a whole new world for people if they have revenue streams and don’t have to rely on Disability [income] and stuff. Some of the most intelligent people I know are on Disability because they can’t work, and I find that very sad.

Sharon daVanport: Right.

Tricia Kenney: Yeah, it is. It is. And there are people out there working towards that goal, and very innovative companies out there right now. I’m so grateful for them, and I’m so grateful for you. As autistic people, most of us don’t have the knowledge, the equipment, the connections to produce something like what you’re doing. So even though we’re out there trying to talk to people, and trying to inform them and give them an idea of what our lives are like and little tips that we could give them, things like that, we don’t really have that media, that way of getting a message out there in such a professional manner. We don’t have PSA spots on NBC and all of that. It’s the people with the money that are really taking over the whole media stream, as far as autism is concerned.

Sharon daVanport: They are.

Tricia Kenney: I really was so thrilled when I saw what you were doing. I’m like: “That’s a real video!” It’s not something that was done off somebody’s webcam.

Dana Commandatore: I want to make it pretty clear that I think there are a lot of people out there like yourselves and there’s other people who are doing incredible work. But like you said, they don’t have the money or the connections. But if I can, through the people that I know and the business that I’m in, get this message out there, then people will start to find…There’s so many great videos on YouTube that autistic people have done, but nobody’s watching them. They don’t know where to go; they don’t know what to do. It’s stuck within the community right now, and I’m trying to pull it out of that, into the mainstream media. Eventually, I’m hoping someday somebody’ll put my spot on TV, one of my spots.

Sharon daVanport: Oh, that would be awesome. Wouldn’t that be great, Dana? That would be wonderful.

Dana Commandatore: Yeah, it’s going to happen. It’s really just a matter of time. I’m not trying to put myself as the face of anything. I’m never in a video; I don’t really want to do that, because it’s not about me. I know that people say that and it really is about them, and yeah, maybe part of my ego, it is about me. But I’m trying to get other people involved. That’s why I use different people in my videos.

I did a small video in between where I also introduced some faces of autistic adults to the mainstream, tried to get people to watch it because Jenny McCarthy and Larry King talked about: What happens to autistic kids when they grow up? and Jenny McCarthy had no idea. She didn’t know any.

Tricia Kenney: Yeah.

Sharon daVanport: I remember that, yeah.

Dana Commandatore: So I put this video together, where I was like: “Well, here’s some for you to meet. And there’s a whole bunch out there and they’re all pretty incredible, diverse people. And maybe you should get to know them before we start claiming to be experts on a subject that people really don’t know that much about.”

Sharon daVanport: Right.

Tricia Kenney: Right.

Dana Commandatore: So this brings me to my next video, which I just shot yesterday. I’m still walking on Cloud 9; I’m over the moon about it. It was unbelievable. I’m not gonna tell you a lot about the actual video because I want it to be a surprise when it comes out. I’m hoping I’ll have it ready in about a month or so. This is taking it to a whole new level. I found a director, Michael Worth, who made a movie called God’s Ears. He wrote, directed and starred in this film about an autistic boxer who tries to start a relationship with an exotic dancer. He’s an autistic boxer, but it’s not like he’s out boxing every night. He works in a boxing gym and loves boxing. It’s not a Rocky-type movie, in that sense.

[Laughter]

Sharon daVanport: Right.

Dana Commandatore: Michael did an incredible job acting, writing and directing the story. It was this little indie film. You can look at it; go to godsears.com or you can look it up on Hulu and you can actually watch the whole movie now. I fell in love with the movie; I was asked to review it for Big Hollywood, and I fell in love with it. I contacted Michael and I spoke with him, and when it came time to do this next video, I decided I was going to ask Michael to direct it. He graciously accepted, and then we just started the ball rolling. We got some incredible people involved. This is the first time where I was actually going to have a group of people all talking at the same time, and I needed real sound people, and people donated their time for that.

It was just absolutely incredible, and I am so happy that I befriended an actress who is autistic—her name is Tammy Kline—who is the focal star of this spot, and she is an incredible woman: beautiful inside and out, and really just brought it yesterday, and so professional, so engaging, and I can’t wait to introduce her to all of you through this video.

Tricia Kenney: Oh. So you’re thinking about a month, then we’ll be able to see it?

Dana Commandatore: Yeah.

Tricia Kenney: Can we see it today? [Laughter]

Dana Commandatore: I know it. I want to see it today, too. I have all the clips on my computer and I just keep looking at them and going back and forth. I’ll be working with a director and an editor to really put this together, and creating the right music just to really get this point across. The whole point of this video—this is where I need the help of the autism community—is, this is where I’m really trying to provide a service for parents of newly-diagnosed children and people who are struggling. I’m creating a page on Rethinking Autism.com called Our Voice, and people are writing in to me and telling me things that they wish they could’ve told their parents as a child, or things that they want parents to know about what helped them or what didn’t help them, so that I’m actually starting to help people.

Tricia Kenney: Right.

Dana Commandatore: And give them much more of something to do and something to learn from.

Tricia Kenney: Right. And that may not apply to every child or every family or every situation, but it might. It might be just what you needed to hear for your situation. I was talking with somebody yesterday about that, and I mentioned one of the things that was huge to me was getting alone time. My mother just absolutely would never leave us alone. [Laughter] I was around my siblings and my family 24/7. There was never a moment alone, and never a quiet time, and that made me nuts all through up until I left. [Laughter]

Dana Commandatore: Yes. Yeah.

Tricia Kenney: I think sometimes we do need to let our children just go in their room and veg for a while.

Dana Commandatore: Yeah. Let them just be themselves; let them stand as much as they want, or do that.

Sharon daVanport: We do need that down time. We really do. Autistics need that. Everyone does, but when it comes to certain sensory things that we deal with, down time is awesome.

Dana Commandatore: But that is the information that parents need to hear. They need to know. You can go through all this technical stuff and all the research and all the behavior analysis. Go through all that, but really, in the end, all the sudden you realize: You know what? I can let my child go in his room and line up his toys for an hour every day. I can do that. It’s okay. And it actually helps him.

Some of the stuff, I don’t want to share it yet because I want it to be on the website. Some of the stuff that people have sent in to me, it’s just so beautiful. And their letters! One gentleman wrote a letter to his parents about how much he loved them and how much they didn’t think that they were even getting through to him. But to know that your child is there listening to you. Even if they can’t touch you, even if it hurts when you touch them, they still love you. And parents need to hear that, so they can [unknown].

Sharon daVanport: Now, Dana, is this recent call for autistic adults to contact you that you did, is this a tie-in with the video? Are you going to post their comments and what they have to say?

Dana Commandatore: Yeah.

Sharon daVanport: Okay. And where can they e-mail you, for those who are listening?

Dana Commandatore: rethinkingautism AT gmail DOT com. But I’m getting some e-mails now; I would love to have tons of them, just to put them up there and get people to give them somewhere to go, to give them some valuable information that they can’t get anywhere else. There’s a tie-in with the video; it’s what the “Call to Action” is for the video.

Sharon daVanport: Okay. That’s awesome.

Tricia Kenney: And I think autistic adults, even teenagers, young adults, older adults, such a valuable tool to the autism community and it’s just not being utilized.

Dana Commandatore: That’s the whole point of this video, is to realize that there is an entire community out there that you can learn from, that will talk to you, whether it’s through a computer or through their voice or through all these different forms of communication that we have now available. They can give you some answers to questions that you’re dying to ask, but you don’t know where to go.

Tricia Kenney: And things you didn’t know you wanted to ask.

Dana Commandatore: Right, exactly.

Tricia Kenney: Things you just haven’t thought of previously, because we get so busy with life and the tasks at hand every single day, especially when you have children who require a lot of care, or a lot of attention. It gets a little overwhelming, and you don’t even think about that stuff after a while.

Dana Commandatore: Yeah. And I hope you guys will both write in to me, too.
[Laughter]

Tricia Kenney: Yeah.

Sharon daVanport: I’ve already got something together for you, Dana. I’ve just had a really crazy busy week last week. You know back when we were playing e-mail tag last week, Dana.

Dana Commandatore: I know; I know.

Sharon daVanport: It was crazy.

Dana Commandatore: We’ve got time; we’ve got time.

Tricia Kenney: My kids are starting school again, so I’ll be able to actually get back into the swing of things, too. I’ll be sending you something.

Sharon daVanport: Dana, did you say it was going to be within the next month? You hope in January sometime, or February?

Dana Commandatore: I’m hoping by the end of January, beginning of February, it’ll be available.

Sharon daVanport: Oh, this is going to be so awesome. I’m really looking forward to this, Dana.

Dana Commandatore: Yeah, I am too.

Sharon daVanport: I’m glad you came on this show and you were able to tell everyone about it. We’re just going to really network this like crazy, so people will know to not only contact you, but what they can look forward to in your next video.

Dana Commandatore: Thank you so much.

Sharon daVanport: Awesome. Is there anything, Dana, that you would like to…? We always do this for all our guests. We like to end the show with them being able to share anything they want with our listeners. So from Dana to our AWN listeners, what would you like to share with them? Anything we didn’t cover? Anything at all?

Dana Commandatore: I don’t think so. It’s the end of the year; it’s the holiday time, and I feel incredibly thankful and grateful for the year that I’ve had with my son. It’s had so many challenges. I just want people out there to just take a few minutes and just be grateful for what they have at the end of this year.

Sharon daVanport: Right.

Dana Commandatore: And if they need help, I hope they can find the people that can help them. I just want to say: “Happy holidays.”

Sharon daVanport: Wow. Thank you so much, Dana. Thank you so much for coming on AWN radio and sharing this great news, this latest news, with all of us. You have a great holiday, okay?

Dana Commandatore: You too, ladies. I’ll speak with you soon. I always appreciate you giving me time on air, so thank you very much.

Sharon daVanport: Okay. Thank you, Dana.

Tricia Kenney: Thank you so much, Dana. Take care.

Dana Commandatore: Take care.

Tricia Kenney: Bye-bye.

Sharon daVanport: Bye-bye.

[Dana hangs up.]

Sharon daVanport: Okay, what a great show, Trish. It was really awesome to have Dana back again, and I’m excited about the video coming out.

Tricia Kenney: Umhm. I am, too. It’ll be a long month waiting for that. [Laughter]

Sharon daVanport: I know, right? But I want to thank everybody in the chat room and all of our listeners on the switchboard, and thank all of you who come in and listen afterwards on the podcast. Just remember, December is our last month for Autism Women’s Network to be in the Pepsi Challenge contest. We are trying to win a grant, everyone. We’re trying to win a grant so we can host workshops across the United States. We’ve been fortunate that though we have placed well within the top 20 the last couple months, we haven’t made it into the top ten, we got to number 16 last month.

We did so good in the national contest. I was so excited. But we just want to remind everyone that there’s still voting going on, so make sure that you get over to our webpage. And get over there and throw us your daily vote, please, because Pepsi, they were just genius in coming up with this, where they’re getting everyone to say: “Pepsi” every single day of their lives while they’re in this contest. [Laughter] You have to vote daily in order for your vote to count for us. If you vote yesterday or the day before and you don’t vote today, we drop in the ranks. So we’re hoping to finish out the last week and a half with everyone being able to get together and help network, post our link, ask people to vote for us. This is it.

But we are going to host the workshops whether or not we get the grant. The Pepsi contest opened up a lot of doors for AWN. We’ve been contacted by now more than a dozen autism organizations throughout the United States, inviting us to host workshops in their city, so it’s not going to be a total loss.

[Laughter]

We learned a lot, believe me. We learned a lot from this Pepsi contest. So, with that said, I think we’re done, Trish. Anything else that I missed, do you think?

Tricia Kenney: No, I think we covered it all. So thank you so much to Dana for being here and of course, for Michael for being in the chat room and helping us along with that. Take care, everyone, and we’ll see you on Thursday.

Sharon daVanport: All right. Bye now.

Tricia Kenney: Bye-bye.

[End]

[Music]

Sharon daVanport: Good day, everyone, and welcome to AWN Radio. We are the Autism Women’s Network on Blogtalk. I am your host, Sharon daVanport, and today is Monday, December 6, 2010. Joining us today will be Savannah Lodgston-Breakstone and Stacey Milbern of the National Youth Leadership Network. Before we bring them on, though, we have just a few quick announcements. Our AWN sponsor, LifePROTEKT, is doing upgrades with our sponsorship package. We will let you know just as soon as it is complete, so that when we get the green light on that we will do our next drawing for the GPS locator and one year of free service through LifePROTEKT. So just keep sending us your stories to be eligible for the drawing, and you e-mail us for that entry at info AT autismwomensnetwork DOT org.

I also wanted to mention that today’s show is going to be dedicated to the young people who this past fall committed suicide because they were bullied for being gay. We’re going to talk more about that during today’s show, so that we bring it full-circle and you undestand what we mean by that. So now I’m pleased to have join us today as our guests…First we’re going to bring on Stacey Milbern. Stacey is a youth activist with the National Youth Leadership Network. [It] is an organization that has been working to build power among disabled young people, and in response to the tragic news of [unknown] [15?] young people committing suicide this past fall because they were bullied for being gay, Savannah and Stacey and a team of disabled young people have been using art and media to talk about the connection between the gay, lesbian, bi, trans and disability communities, and the way that violence is experienced by many who do not fit into society’s little box of normalcy. Again, AWN radio does respectfully dedicate this show to the young people who committed suicide.

So I’m going to bring on Stacey now. Welcome to the show, Stacey.

Stacey Milbern: Hi, Sharon. Thank you for having me today.

Sharon daVanport: Well, I thank you very much for taking the time to come over to visit with us and let us know what the National Youth Leadership Network has been doing, especially in response to the tragedy that happened this past fall. Before we get started, there’s actually two starting points. I want to make for sure before we get too far into our discussion, we might talk a little bit about vocabulary and maybe some of the words that you use.

When we talk about the different language that maybe perhaps is being used today. I know that when you and I visited when we were getting the show together, I was really hesitant and honestly felt a little uncomfortable, because I didn’t want to say the wrong thing. I didn’t want to say something that would be offensive or not say something that you prefer, and I appreciate you being very patient with me and helping me [laughter] understand. I come from a generation where a lot of the words that I know that you use personally are words that would’ve been offensive, in the ’80s when I was in high school in the late ’70s and early ’80s. So if we could start with that, I’d like for you to speak to that a little bit, about language and why you’re embracing some words that in generations past were offensive.

Stacey Milbern: Sure. Thanks, Sharon. Well, I think the first thing to say about that is it’s not only in GLBT communities, but also in disability communities and communities of color that language is consistently changing and taking on new meaning. I think that’s always going to happen—kind of a natural process. In terms of words that I use to describe myself, there are two schools of thought right now among GLBT folks, and one is talking about needing to show society that we fit into this box of what is considered normal.

Sharon daVanport: Right.

Stacey Milbern: In that school of thought, you see a lot of folks saying: “Okay, this why we should fight for the right to be married. This is why we should fight for the right to serve in the Army” kind of thing. All those issues. And then in the other school of thought, you have people that identify more as queer instead of GLBT. Even though that is a word that historically holds a lot of trauma, a lot of folks are using that to describe more of a liberation movement and talking about: “Why should anybody try to fit into what’s normal? We should be smashing that idea of what’s normal, because it hurts us all.”

Sharon daVanport: Okay.

Stacey Milbern: So you see those two schools of thought and the way they both take on violence and bullying tells a lot, I think, about how people identify with the community and where their politics lie and all those things.

Sharon daVanport: Right. If you could speak a little now to what the National Youth Leadership Network is, how you guys got together and organized yourself, and to this great organization and what you’re doing.

Stacey Milbern: Sure. Definitely. So the National Youth Leadership Network, which folks can go online and check out, is an organization that is led by young people with disabilities for young people with disabilities. So what that means is that we really do a lot of work to try to be a resource base for youth with disabilities, because we recognize so many barriers are access- and information-related. So, yeah, just making sure young people have the information they need, whether that’s about things more typical, like employment, or it could be relationships, how to develop support systems, how to be in a world that accepts you—all those kind of things. And in addition to that, we really work to connect young people together. We do a lot of work with youth organizations that are run by youth with disabilities and all kinds of stuff like that.

Sharon daVanport: Okay.

Stacey Milbern: So we do some exciting—what does that say? “I am the [unknown]” I don’t even know—so we have a lot of exciting things going on right now. Yeah.

Sharon daVanport: Well, that’s good. So you are specifically a youth leadership network that addresses disabilities?

Stacey Milbern: Yeah. [It's] specific to the disability community, but in the last year, we started to recognize the way that we belong to multiple communities and how communities are connected to each other.

Sharon daVanport: Okay. Let’s talk about that. That’s a good point, Stacey. That’s something we really wanted to talk about today: how the disability community is connecting to other communities. Can you make that connection, draw that connection for our listeners on why we’re talking about disabilities and the gay, lesbian community today?

Stacey Milbern: Yeah. So, again, I think a lot of times the GLBT community gets talked about in this really one-dimensional way, where we’re just talking about one person liking somebody who’s the same gender and we’re not talking about a queer perspective, where we talk about how people are resisting ideas of masculinity or femininity. Or people are resisting gender norms, body types, all these kind of things. For me, that really just fits so perfectly with disability, because we’re talking about two communities that oftentimes defy norms and how those communities get treated when they defy norms. There’s a lot of connections there.

Sharon daVanport: Okay.

Stacey Milbern: So we’re talking about bullying today. That’s a perfect one where people don’t fit in and their bodies get policed.

Sharon daVanport: Right. So you’re saying that you can identify. Being a person that you identify yourself as having a disability, you also identify with another community, because what brings you together and what you identify with is the way that you’re discriminated against. Is that what you’re saying?

Stacey Milbern: Well, I think not just discriminated against, but moving through the world with a non-normative body identity.

Sharon daVanport: Oh, okay. Sure.

Stacey Milbern: Yeah, disabilty and GLBT [folks?] both fit out…so [unknown] is all a big box on the [screen?] right? I think on the inside of the box you put people who speak English, middle-class folks…What else is there? All kinds of folks go in the middle and then you draw a box around that, and then on the outside you put people who don’t fit in, and you do that for immigrants, people of color, people with disabilities, GLBT folks, working-class folks, and just looking at how those boxes get maintained. There’s a lot of connections there.

Sharon daVanport: Okay. Now, something that really caught my attention, something that the NYLN has been doing, that’s how you guys have been using art and media to draw attention to just what happened this past fall and the 15 young people—I guess it’s over 15 now—who’ve committed suicide, because they were bullied for being gay.

Stacey Milbern: Yeah.

Sharon daVanport: Talk to us a little bit about what you’re doing when you say you’re using art and media. What are you doing?

Stacey Milbern: Sure. The first thing we did is earlier this fall, when these suicides started to happen, we felt really impacted by them and connected really deeply to the young people who were experiencing this violence. So our organization put out a statement that was pretty widely circulated, where we talked about the need for the disability to work with other communities and also address bullying as violence.

Once that statement started getting conversations going, we were approached by one of our members who asked us if she could make condolence cards for the families of these young people. So we didn’t have their contact information, of course, so we decided that we would follow her lead and start collecting cards, do things like that, and then use them to create awareness about this issue and talk about how people experience violence in their communities. Just how to hold people accountable when that happens.

Sharon daVanport: Right.

Stacey Milbern: So we’ve been collecting cards and posters and artwork and letters and poetry, and we have 30 pieces right now. So we’re in the process of compiling that and putting it online. And then we continue to hope to do more outreach via radio interviews like this and on college campuses and all those kind of things. So it’s a pretty exciting time, in terms of when you have tragedy or crisis, using it as an opportunity to create change.

Sharon daVanport: Right. Right, that’s a good point: using something that comes up, maybe it seems like it’s so devastating, but taking it as an opportunity to create change. That’s a very good point, Stacey. What is the message that you’re trying to get out when you go to college campuses, when you display the artwork? What are some of the bottom-line messages that you see a lot of the people in the NYLN are trying to get out there, and you personally?

Stacey Milbern: Sharon, can I read you our [unknown] from the statement?

Sharon daVanport: That would be awesome. Yes, please.

Stacey Milbern: Okay, let’s see. This was earlier this year:

“In the past five weeks, more than a dozen youth have committed suicide. All of these young people were targets of violence and bullying. They were part of – or thought to be part of – the gay, lesbian, bisexual, transgender, or queer (GLBTQ) community.

“This news breaks our hearts. As an organization led by young people with disabilities, many of us have been bullied, too. We know what it’s like to be told that we are not worthy of life. We know what it means to be on the verge of suicide. Because of this, we want to speak about what is often left unspoken. We want to emphasize the value of the lives that ended because of unjust judgment, hatred, and disrespect. We want to call on our communities to be more accountable [responsible] to one another when people hurt each other. We want our communities to work end violence and bullying. We want to challenge our movements to create a world where youth do not resort to suicide or self-harm. We also want to grieve together about the loss of these lives and the feelings of emptiness, aloneness, and unworthiness that led to these events.”

And then we have five points that we put out after that.

Sharon daVanport: Do you want to share those, too?

Stacey Milbern: Sure.

“We want to charge our community—specifically the disability rights community where we work—to do the following:

1.) Shift the work that we do. We must change values. NYLN focuses on interdependence and building community support systems. We must talk about what it means to be a community and how we can really be accountable to each other. Billy Lucas was told to “go kill himself.” Asher Brown’s family said he was “bullied to death.” Bullying is violence. Our communities need to recognize violence so no one is alone in experiencing it.

2.) Actively work against violence. Billy Lucas was told to “go kill himself.” Asher Brown’s family said he was “bullied to death.” Bullying is violence. Our communities need to recognize violence so no one is alone in experiencing it.

3.) Say no to harmful media messaging. Media is in charge of so much of the messaging we get about GLBTQ community, people with disabilities, immigrants,and others. We need to tell companies that we will not support them when they put out messages that perpetuate [spread] hatred. As disabled and GLBTQ youth, we must also put more effort into creating our own media so we can hear our own stories being told.

4.) Move beyond one-issue agendas. We could talk about bullying and not talk about violence or media. We could talk about it as a disability issue and not talk about GLBTQ youth. But violence does not fit into a one-issue agenda. If we are not connecting community experiences, we are not doing enough.

5.) Address the issues in all arenas. As of October 2010, only 45 states have addressed bullying in public schools. We must make sure laws protect people everywhere

We want to have these conversations in community. We hope you will join us.

And then it says: “Signed, the National Youth Leadership Network.

Sharon daVanport: Okay. Now, are you circulating this message from the NYLN? Is this what you take when you do presentations and you address people at college campuses?

Stacey Milbern: Right now we’re just using this as a conversation starter, and we’re in the early stages right now of reaching out to colleges. But what we hope to do is develop a curriculum that specifically speaks to how heterosexism and ableism work together.

Sharon daVanport: Okay. I told you this last night and then a couple weeks ago, when we met, Stacey. I’d like for this time that you’re on here to more or less be your time, to where you are able to get this message out. It’s such a tragedy what happened, and when we heard that you guys over at NYLN were actively doing something about this and wanting to speak up about this, we were just really excited to have you on the show, and we want you to use this as an avenue. Can you go through some specific points? Or did you want to take those five points and maybe mention how you’d like to see our communities go about doing this? I like point number 1, where you said there needs to be accountability.

Stacey Milbern: Yeah.

Sharon daVanport: That’s huge. So when you say that, it’s one thing to say it, but what do you think our communities need to do more that you see that they haven’t been doing, when you talk about accountability?

Stacey Milbern: Yeah, well I just think the disability rights community, where things like, historically, the focus has been on service provision as well as civil rights legislature. So we have a lot more rights than we did 20 years ago, so we’re more powerful as individuals. But I don’t know that we’re more powerful as a community So we say “shifting the work we do,” we mean talking about what does it mean to be a community to each other? How can we be each other’s support system? When one person gets hurt, how can we address it instead of expecting the state to solve all of our problems?

Sharon daVanport: Right.

Stacey Milbern: In terms of interdependence, in NYLN we really look at challenging the American myth of independence and looking at how disability forces the conversation to move past “I deserve to be independent” to talking about no person lives on an island by themselves. Nobody can be truly independent, and if we want real liberation or real community, we have to recognize that people need each other. How can we need each other in a way that supports everybody being included?

Sharon daVanport: That’s a good point, Stacey.

Stacey Milbern: Yeah. Just really, really pushing the conversation to be about interdependence rather than independence.

Sharon daVanport: I see. Okay. What are some things that you would like to see personally or with the NYLN? What are some of the things you would like to immediately see? Is there anything more than any other that you are trying to focus on? Is there a method to the message you’re getting out? Is there something that you would like for all of us to know?

Stacey Milbern: Totally. I think right now the most exciting work NYLN is doing is to really talk about systems of power. So again, in the disability rights movement, we talk a lot about discrimination, but we don’t ever really talk about ableism. So we’re talking about all of our experiences with oppression, but we’re never calling it “oppression.” But I feel like once we start talking about systems of oppression like ableism or racism or heterosexism, that’s when we can really talk about creating change.

So first I would really just like the disability community to have language to talk about how disability or our ideas of ability get used against people.

Sharon daVanport: What do you mean by that? “Being used against people”? Can you give us some examples?

Stacey Milbern: Sure. Yeah. The way NYLN defines “ableism” is as: “A system of power that favors ablebodiedness—able-bodied people.”

Sharon daVanport: Right.

Stacey Milbern: So we see the way that government favors able-bodied folks, or we see that education systems favor neurotypical folks. So rather than talking about that as individual situations, connecting it as patterns and looking at how these things that we experience every day are a part of a whole class of people being kept down, so that another whole class of people can be kept up.

Sharon daVanport: Okay.

Stacey Milbern: I feel like, when you start having that conversation, that’s when you really get to talking about a student at a school experiencing bullying, that’s not just bullying. That’s violence to keep that person in a certain class and all that kind of stuff.

Sharon daVanport: Right. Has the NYLN or you personally or anyone there been able to reach out to any of the families yet? Are you still compiling things together and working on that?

Stacey Milbern: Yeah. We want to be really thoughtful and strategic and really [intentional?] about it. So we’re trying to take our time and not be pushed by an outside pace. But, yeah, we’re in the process right now of compiling everything, researching it all, and making sure that we know specifically what we want to say, instead of doing really sloppy connecting to people that are grieving.

Sharon daVanport: Right. That’s really good, Stacey, and real thoughtful of you to be considerate of that at this time. I appreciate how you brought out earlier in one of your points how one of the young men who committed suicide did so and his parents believe he was literally bullied to death, because he was actually told to go and kill himself. Not to seem morbid or anything and to talk about details, but I’d like to just for a moment talk about…that’s pretty severe. You talk about that, and that’s probably why you highlighted that in one of your points that you were bringing out. That goes to show that this isn’t just someone being upset and they did something and they lost their life. This is really someone who ended their life and they were even tormented in that way and told to do so.

Stacey Milbern: Yeah.

Sharon daVanport: Is this something that when you talk about this particular youth—and we don’t even have to just zero in on that, other than to bring out the point—is it something that you see when you’re talking about patterns? You were talking about connecting these things as patterns. Is that in itself a pattern, when you talk about bullying? It seemed like an awful lot, this past fall. I don’t know if it’s because it made the headlines, it made the news, and there was so much about it. What do you think these patterns are, and how can we address them?

Stacey Milbern: Yeah. [Unknown] question. I feel like that’s why AWN’s work is so important. For example, if you look at the list of people, the majority of them, except for two people, are all identified as men. So there’s two things to say about that. One, we could say, is that all the media coverage didn’t cover GLBT women, which is a huge issue. We see that with autistic women; we see that with disabled women—the lack of coverage.

We could also connect this to society’s idea of masculinity and people not fitting into it. And when we have that conversation, we can also have a conversation about how do women defy gender norms, and then how are those neurotypical, hetero, white, able-bodied norms used to really push out people that are different? I think that’s a big pattern, with the people whose lives were recently lost.

Sharon daVanport: Right. Has the NYLN thought about approaching schools? Are you guys doing that, and talking to young people in high schools?

Stacey Milbern: Right now, again, we’re just trying to…I don’t know. I think a lot of organizations start out really big and then they lose a lot of speed. So we’re trying to pace ourselves and figure out exactly what we want to do. Right now, our membership is starting by just focusing on local colleges in our individual areas. So we’re going to do that over the next [two?] months, and then hopefully expand the conversation in the early Spring.

Sharon daVanport: Right. Well, I think this is just wonderful, Stacey. Are there any other points that you wanted to bring out? I know that we had planned on Savannah joining us and she had some points that she was going to bring out, but we can bring her on later. It looks like she’s having some problems getting through to the switchboard. Sometimes Blogtalk has some problems getting connected through. So I wanted to let our listeners know that we had Savannah on the schedule, but it looks like she’s having a real difficult time getting through to the switchboard. So if we could finish up the time with you being able to share with our listeners, then. I know you and Savannah had gone over a lot of different points. Is there anything else that you’d like to share about NYLN or the movement, and what you’re doing?

Stacey Milbern: Sure. Let’s see. I think one final point about this is it’s not some kind of recent phenomenon. I think self-harm and bullying is a constant. And it’s just that this Fall, the media covered it a lot. We need to also look at the young people that lost their lives. They were all over the country. I think a lot of times, people like to think: “Oh, that’s happening in Mississippi,” but it’s not. These are literally all over the country. These are in people’s neighborhoods; these are in people’s schools, and it’s definitely an issue for everybody.

Sharon daVanport: Right. I think that’s a good point; it’s happening everywhere. I think sometimes we become a little bit numb if we watch the news a lot. We just do. So many of these things are happening that it doesn’t become personal to us until it touches us personally, and that’s sad in itself, to think that we have these walls and barriers put between us and other people, to where we don’t view their experience as being something that we need to take pause and really reflect on and think about. I guess, because I’m a parent, it really touched me when I saw these young people. They’re out there killing themselves and feeling like there’s absolutely no reason for them to be on this earth, and that’s just so tragic. It’s very tragic. I think that the message that the NYLN is trying to get out there, and the way that you’re organizing it and trying to be very conscious of the very sensitive nature of the entire situation that inspired you, I think it’s just beautiful the way you guys are doing it. You talk about you’re putting things online. Can we go over to the website and view the artwork that you’re putting online? Is it at the actual website for the NYLN?

Stacey Milbern: Yeah. If you go to NYLN.org, we’ll be putting it up throughout the week.

Sharon daVanport: Okay. Can you give us an idea of what it is?

Stacey Milbern: Sure. Some of them are cards and the messages are things like: “Bullying must stop. I’ve been a target, too.” One is this beautiful, beautiful poster. I can’t even describe it; it’s so gorgeous. It’s as if you were looking through a million different pieces of glass at a rainbow. It’s really beautiful.

Sharon daVanport: Oh, wow.

Stacey Milbern: There’s one movement elder who’s been contributing her poetry. She’s an older disabled lesbian who’s been working in [unknown] communities, so that’s going to be there. There’s all kinds of really heart-wrenching pieces that are going to be online this week.

Sharon daVanport: Wow. I’m really excited. I’ll be over there to look at that, and we will definitely post over at the AWN a link to that as well for people to go over there and look.

Stacey Milbern: Thank you, Sharon.

Sharon daVanport: Oh, you’re very welcome. I just appreciate you taking the time to be with us today. Is there anything at all that you’d like to say in closing? We always do this at AWN radio. We always allow our guests to close out the show and say anything they like: any kind of message you’d like to leave our listeners with, or maybe share with us something I didn’t ask today that you’d like to make for sure we get into the show.

Stacey Milbern: Yeah. So just as a final plug for NYLN. Membership is open to anybody, so that means youth with disabilities, our parents, our adult allies, our siblings, our support systems. If folks sign up to be a member, they have access to all this information. We send out an e-mail twice a month with scholarships, internships, poster contests, all those kinds of things, as well as keeping up with the network. So I would definitely tell folks to check that out.

Sharon daVanport: Okay. That’s awesome, and I will go ahead and make sure that we get all of that posted over at AWN for you guys, Stacey. I just thank you so much for being our guest today and explaining to everyone about the National Youth Leadership Network.

Stacey Milbern: Thank you, Sharon.

Sharon daVanport: All right. You have a great day, Stacey.

Stacey Milbern: You, too. Bye-bye.

Sharon daVanport: All right. Bye-bye.

[Stacey hangs up]

Okay, everyone. That’s going to do it for us today on the Autism Women’s Network on Blogtalk. We appreciate you joining us here on AWN radio, and we will be posting our lineup coming up for the next three months over the next two weeks, so be watching for that over on our website and here on Blogtalk. Thank you again to all our listeners, and we will see you next week on Monday: same place, same time. Thank you. Bye-bye.

This is a transcript of the Autism Women’s Network’s interview with Anna Moore, parent of an autistic son who’s involved with Families Against Restraint and Seclusion.

[Music]

Sharon daVanport: Hello, everyone, and welcome to AWN radio. We are the Autism Women’s Network on Blogtalk. We’re streaming to you live over the Internet from the Midwest, USA. I am your host, Sharon daVanport, and today is Monday, November 22, 2010. In just a few minutes, we will be bringing on our guest for the hour, Anna Moore, an advocate for Families Against Restraints and Seclusion. [Warning: Link contains images and discussion of child abuse] First, I want to welcome back our co-host, Tricia Kenney, who’s been absent as many people have known over the past couple weeks. Welcome back, Tricia. We missed you while you were away.

Tricia Kenney: [Chuckles] Hi, Sharon. Thank you so much; it’s good to be back. Yeah, I know I was MIA for a while, but we made a very important move and it really ties into the show today. But we did it for a good reason—for our children—and we’re busy getting settled in and everything. But glad to be back with the show and everybody else.

Sharon daVanport: Oh, that’s so nice. And I’m so glad that the move is turning out to be just as positive as you had anticipated. So, looking forward to hearing more and more about that as the kids get settled in.

Tricia Kenney: All right. Sounds good.

Sharon daVanport: Yeah. Well, first, we wanted to give one quick announcement. It’s about our sponsorship with LifePROTEKT. To enter our AWN monthly prize giveaway, which is sponsored, of course, by LifePROTEKT, you just only need to submit your story to us here at Autism Women’s Network as to why your loved one would benefit from a GPS location device, and our e-mail address for that entry is info AT autismwomensnetwork DOT org. And good luck.

Tricia Kenney: There are a few stipulations. [Chuckles]

Sharon daVanport: Yeah, I was going to say. If you want to go ahead and tell them before we totally close it out, some of the stipulations. Is it cell phone coverage, correct?

Tricia Kenney: Yes. You need to be in a place where there is cell phone coverage, because that’s how these devices work. So if you are way out in the boonies and you don’t get cell phone coverage, this device just would not work for you. So they’re working with technology to make that better, so that it can be farther reaching out. For the time being, though, this is just the way the technology is at this point. So if you live in a place where you get strong cell phone coverage, you’re fine.

Also, you would need to make sure, because this is a device that is like a wristwatch, you need to make sure that your child will be okay with having that on. I know a lot of our kids have sensory issues and just won’t wear things like that. So it is something that attaches to the child. If you want to do it in a different way once you get the device and not have it around their wrist—if you want to put it in their pocket or attach it in some way where they won’t remove it, that’s fine. But it is like a wristwatch, so you need to be aware of that, for those who do have those sensory issues.

Sharon daVanport: I know a parent who actually loops it around the back belt loop in the very back of her son, because he doesn’t like the way anything feels. In school, he won’t sit against a chair, so she doesn’t have to worry about him feeling or knowing that it’s back there, because he’s not going to sit up against a chair anyway, because he doesn’t like that feeling on his back. So she just hooks it to the back of his pants, a little watch device. So that works well for them. So I guess there’s some different ways you can do that.

Tricia Kenney: Yeah, just be creative. But it’s such an important way to help find your child, if they are one of those children who likes to run off and give us all heart attacks. But it’s a way to help protect your kids, so if you have that situation in your home…it’s for younger children, too, because it’s a smaller wristwatch, so really, we wouldn’t want to do this for anybody over the age of 12, just for the size issue of it. But for those of you with children who are 12 and younger who do have that issue, this is just such a wonderful gift, and we’re so grateful that LifePROTEKT does help us with this every month.

Sharon daVanport: Right. Okay. And I’m glad that we were able to explain that, because I didn’t want anyone to think that once they get the device…if they know ahead of time that there’s some sensory issues, then they definitely could decide if it’s going to be an entry that they want to put their name in for.

Tricia Kenney: Right; right.

Sharon daVanport: Okay. All right. Well, I’m excited about our guest Anna Moore today, Tricia. I’ve been seeing a lot of information around the Internet on some different videos, actually, is how I came into contact first with her name last year—a video that was put out. I’m just real excited for her to come on and tell us why she’s been involved with Families Against Restraint and Seclusion, and that’s something very near and dear to your heart. [Chuckles]

Tricia Kenney: Yep, yep. So she’s got a great story and she does so many wonderful things in the community. Why don’t we go ahead and bring her out, and she can tell us what she’s been doing?

Sharon daVanport: Okay. Welcome to the show, Anna.

Anna Moore: Thank you.

Sharon daVanport: Yes; thank you for being with us today.

Anna Moore: Thank you for having me.

Sharon daVanport: Yes. Trish and I wanted to first start out, Anna, by asking you to explain to our listeners what organizations you are involved with and then why you became involved with these organizations. Basically, just tell us your story.

Anna Moore: Okay, sure. I’m with Florida Families Against Restraint and Seclusion. [Trigger Warning: Link contains images and discussion of child abuse in schools] We also have Families against Restraint and Seclusion, which is a national site, and then I’m an advocate with Florida Families Against Restraints and Seclusion. I got into it back in 2007 when my son was restrained at school. I never knew that this went on; I always assumed the schools weren’t allowed to put their hands on your children. He was seven years old; he was very tiny. My son was about 52 pounds.

Sharon daVanport: Oh.

Anna Moore: He was always very well-behaved. Never talked much to other people, but at home he did. Never a behavior problem. He’d had a lot of sensory issues, things like that. His senses are very hypersensitive; he hears extremely well; his sense of smell is unbelievable. So things would really bother him. Since he didn’t talk to other people so much, it was difficult, I guess, for them to understand what was going on. The first time it happened, it was really strange. He went to school. There were four incidents in total, and all of this happened—

Sharon daVanport: That’s okay. If you could explain all of that, that’d be great—how it all evolved, yeah.

Anna Moore: And all of this happened in a month and a half period.

Sharon daVanport: Wow.

Anna Moore: They start school in August, and this started happening the middle of March. School’s almost out in May, and this is when this started happening. Sometimes the lunch room would be too noisy for him; that was a really difficult area for him. I don’t know why it is, but it seems like every school [there] is always one of those lunch ladies [Chuckles] that causes problems for our kids because they don’t get it. One time he grabbed something he thought he wanted and he put it back, and of course the lady screamed at him: “You can’t touch the food!” So for two weeks he wouldn’t eat and he wouldn’t go inside the lunch room. Just things like that.

Sharon daVanport: [sadly] Oh.

Tricia Kenney: [sadly] Oh.

Anna Moore: So I had to go up and I told him to tell me who it was, and I went over and explained to her my son’s issues, and asked her if she could please apologize to him so that he’s not afraid to come back through your line. And she did; she was very nice. I did it in a very nice manner and everything worked out fine. I don’t know about everybody else, but I tend to have to do things a lot like that. It’s happening a lot less, thank God.

But anyway, the first restraint, it was time to go to lunch and he didn’t want to go. My son always puts his head down. He’ll block off the visual stimulation so that…He’ll participate in class, but he knows enough to block off that visual, because he’s getting overwhelmed. So he didn’t want to go to lunch, so he put his head down. And all of this is hindsight. All I did was I got a phone call that day from the nurse. I always make friends with the nurse and the janitors and the lunch ladies. They all know what’s going on at school.

[Laughter]

Tricia Kenney: Good idea.

Anna Moore: So she called me, and she said: “Anna, I have Isaiah in here and he doesn’t look well at all.” And I’m like: “All right; I’m on my way.” I said: “How did he get there?” and she said: “He was brought in by the administrator and I was asked just to watch him. So I don’t know what’s going on, but you need to get here.”

Sharon daVanport: Oh.

Anna Moore: So I ran down there, and I went into the clinic. He was sleeping. Isaiah’s ADHD, but he’s Inattentive, and sleeping happens a lot with Isaiah. It’s hard to keep him awake sometimes, but this happened to be from what he went through. So I went to check on him, he was sleeping, and I told her: “I’ll be right back.” I asked for an administrator; nobody would come up. So I signed myself in, and I went into the school looking for somebody.

So when I went in, they have a safety monitor—in other words, the person who monitors the lunch room, things like that. She was passing me, and she said: “Mrs. Moore,” and I said: “Yes?” She said: “I had to hold your son today.” And I said: “You did?” And I’m listening to her and she tells me: “Yeah, he didn’t want to go to lunch room and they called me in.” Then she started showing me what she did. She said she had to go behind him and wrap her arms around him, while—and she used the name “Trish”—grabbed him by his feet. And I was like: “Really.” Trish is the principal’s secretary. [Chuckles]

Sharon daVanport: Oh, wow.

Anna Moore: I’m pretty sure she’s not trained in restraint.

Sharon daVanport: Right.

Tricia Kenney: Oh.

Anna Moore: And all of this, because he had his head down on the desk. This is my point that I want everybody to understand: They’re making it sound like our kids are aggressive. No; our kids are shutting down and they’re provoking them, is what’s happening.

Sharon daVanport: Right.

Anna Moore: It turns out there was five of them who surrounded him at the table, and one of them reached under and pulled his glasses off, so now he’s under a table, he can’t see, and he’s got five people surrounding him. And he’s seven years old.

Tricia Kenney: Oh.

Sharon daVanport: Ugh.

Anna Moore: I did have one woman there who was phenomenal with him, and she happened to actually be the dean of discipline. So when he saw her, he ran to her, because she’s always been wonderful with my son. One day he was having an issue where he shut down and he wouldn’t go with anybody. She pulled up in a golf cart; he jumped in, and she took him to her office, let him relax and everything, and then took him back to class. So she was wonderful with him, so she got him to come to her. She dropped him off in the clinic. And I did forget to mention he had mucus all over the front of his shirt.

Sharon daVanport: Oh, my goodness, Anna.

Anna Moore: And where I was with the woman who said she had to grab my son, and I asked her: “Do you know what autism is?” She said no, so I was going to explain it and I just decided: You know what? She just seems so clueless. I didn’t have time; I just want to get back to my son after I found out what had happened.

Tricia Kenney: Yeah.

Anna Moore: And as I was walking away, she said: “Oh, Mrs. Moore, maybe you should call Supernanny.

Sharon daVanport: Oh, wow.

Anna Moore: It’s a good thing I had to get back to my son, because I was furious. She caught herself trying to make a joke. Just completely clueless. So I just went back to my son, and I realized, my son is burning up with a fever, and his eyes are rolling back in his head. So I got him in the car; I knew I didn’t have Tylenol at home, so I went into Walgreens and I’m giving it to him in the car. I called my pediatrician right away, because now I know they had their hands on him, and I got him in there about four hours later. AT that point, he had 102, almost 103 fever.

Tricia Kenney: Wow.

Sharon daVanport: Wow.

Anna Moore: So he was a lot hotter than that [before I gave him the Tylenol]. They didn’t even take into consideration that he was sick. My son gets strep throat, but he has no symptoms until it’s really, really far gone. So he was on antibiotics for about ten days prior to this incident, so I thought he was fine. We sent him back to school. He was fine when he went in. Well, it turns out he had viral bronchitis on top of it. So he was sick. That’s why he didn’t want to go to the lunch room. And instead of somebody figuring that out, you start ripping him out of a chair and restraining him because he won’t go in the lunch room?

Sharon daVanport: Oh.

Anna Moore: And that was the first incident. And according to my son, they all had him up in the air. One had one arm, one had the other arm, and two other people had his legs.

Sharon daVanport: I can’t imagine how scared he was, Anna. Jut how traumatized he must have been.

Anna Moore: I know. What you need to realize, this is a little boy. And in that classroom was earning Es in conduct. Es are very difficult to get. That means excelling at grade level expectations, at works well with others, follows class and school rules. Now, Isaiah’s a twin; his twin sister, she’s always on the honor roll and she only gets Ss in conduct, because she talks too much. [Chuckles] But that’s a point I just want people to get, is that this is a very well-behaved child. Very quiet, would never disrupt the room, and this is what they’re doing.

After that happened, I went online. I started typing in “restraint.” I think I was using the word “restraint,” I started typing in things, and that’s when I found Phyllis. And Phyllis is the founder of Families Against Restraint and Seclusion. Thank God for Phyllis, because I don’t know what I would have done. I never ever thought they could touch people’s children like that. I had no idea.

Tricia Kenney: I’ve been the same way. I figure it’s the same for schools as it is for strangers; you just don’t lay on your hands on anybody’s children. I had no idea that it was okay for the to do this.

Anna Moore: Right, I know. And then so I found an No Restraint letter that attorneys had put together. They have an autistic child and they had drawn up this No Restraint letter, so I got it, filled it in for my child, and I filed it with them at school. So now I immediately call an IEP meeting; I won’t send him back. Of course, the head of EFE says: “This should’ve never happened; this’ll never happen again.” They assured me that this shouldn’t have happened, and so I trusted them, and I sent my son back.

Sharon daVanport: Oh.

Anna Moore: The next time was in April. I’m trying to remember the second one. My son, we taught him when he feels overwhelmed to put his head down. That was the norms of the classroom; the teacher was fine with it. And he only did it for ten or 15 minutes, and then he would come right back and do what needs to be done. Well, she kept harassing him while his head was down: “You know you’re choosing not to do your work; you know that you’re going to have to complete this at home.” And he would just agree with anything she said, because he wanted her to leave him alone.

Tricia Kenney: Right.

Anna Moore: So I told him: “You know what, Isaiah? Go into the restroom. Go into the bathroom.” The bathroom is in the classroom, mind you. “Go into the bathroom and just take your ten or 15 minutes. That way, she can’t keep hounding you.” He needs you to be quiet. He’s trying to stop stimulation and he needs you to be quiet. So he went into the bathroom. Well, at this point, my son is high-functioning, so people don’t think that he has a disability because they don’t know him. People that know him, they’ll see the different things. But this teacher just really thought that there was nothing wrong with this child and it was all me. I found that out later on, not at this point, because we were working together at first.

So she called the ESE department, told them that he was locked in the bathroom, and they sent two janitors to come and unlock the door. Like I said, I know the janitors. So the one guy, when he opened the door and saw it was my kid, he was like: “I’m not touching this kid,” and they walked out of the room. Somebody from the ESE department was there also. Well, she went into the bathroom and started restraining my son and pulling him out of the bathroom.

Tricia Kenney: Wow.

Anna Moore: At this point, I had put a safe space for him in the classroom, and so what she did was she…well, now, it’s hindsight, again. My son said later that she threw him into his safe space. Now, all of this happened. I pull up at school to pick up my son; my son gets in the car. This is how it began, how I found out that the second restraining, because I just went right into it, but I didn’t tell you. I pull up to pick him up, my son gets in the car, he’s very quiet and has a big red mark across the side of his face. I’m like: “What happened? What happened?” And now he won’t talk to me. He’s like: “Just leave me alone; just leave me alone. Stop talking to me; nothing’s wrong; nothing happened.”

So I leave and he’s quiet all day; he goes in his room, and at 6:00 I get a phone call. It’s a parent from one of the kids in the classroom, and she proceeds to tell me: “Anna, you’re not going to believe what my son just told me they did to Isaiah.” And I’m like: “What?!” I’m freaking out. “What?!” And she told me that: “They ripped him out of the bathroom and my son said they threw him into a stack of chairs.”

So I go running for my son. I’m like: “Isaiah, what happened today?” He’s like: “Who told you? Who told you?” I’m like: “Another parent just called me.” And he starts screaming and crying: “”They hurt me, Mommy. They hurt me.”

Sharon daVanport: Oh.

Tricia Kenney: God.

Anna Moore: I start feeling around his head and I realize that his temple and behind his ear is swollen. So I rush him to the emergency room. I’m not a doctor; I don’t know. He was lethargic. So we get that done, and at least it’s documented and my son is fine, so we come home. He’s fine physically, but not mentally.

Tricia Kenney: Right.

Anna Moore: Now, at this point, I call the police. I file an abuse, and I called the DCF, which is the Division of Children and Families, and I report abuse. So everybody had to fill out police reports, and that’s how I got the story, because they didn’t have time to get their stories together. They immediately had to write them, so everybody’s story varied. One said they gently placed him on a pillow.

Tricia Kenney: [Chuckles]

Anna Moore: [Laughter]

Sharon daVanport: Right. I’ll bet they did, uh-huh.

Tricia Kenney: Oh, God.

Anna Moore: And he banged his own face into the stack of chairs. Yeah, okay. So it’s pretty funny how all the stories didn’t match. So, again, I’m not sending my son to school. So they’re calling me: “He’s got to come back to school. We need to do a Functional Behavior Assessment.” Now, I know it’s not my son. I know it’s the environment and the teacher, so I say: “Yes, let’s do a Functional Behavior Assessment,” which is an FBA. I’m thinking he’s going to observe, he’s going to clearly see what’s setting him off, because she doesn’t stop harassing him when he needs just ten or 15 minutes.

So they tell me they have an autism specialist, a behavior analyst, and I’m like: “Okay, great. I want to talk to her before she goes in there.” I refused to send my son back. I said: “He will not go back for a full day.” I refused. I said: “How long do you need?” And they said: “Two hours.” And I said: “That’s fine, and I’m going to stay in the school, and I want to talk to her. So we sat down, we talked. She’s an autism specialist, okay. Keep that in mind. [Chuckles] So I eat lunch with him at school and I let him go with the class. They go outside for recess. So he’s playing, everything’s fine.

Now, what I didn’t mention is, up until this point my son was so scared to go to school that he started urinating on himself in the classroom, because when he tried to come home, she wouldn’t let him.

Tricia Kenney: Oh.

Sharon daVanport: Oh.

Anna Moore: And I think it’s absolutely brilliant. A child wouldn’t just do this unless he just completely has no other options. He urinated on himself, knowing she could not leave him in wet clothes, and I would have to be called.

Tricia Kenney: Right.

Anna Moore: That’s where we were at.

Tricia Kenney: Kids are great problem-solvers, aren’t they? [Chuckles]

Anna Moore: Yeah, yeah. Well, I didn’t realize what they were putting him through. I never imagined…I keep being told: “This shouldn’t have happened.” Now, the Functional Behavior Assessment, somebody’s supposed to observe. That’s what it is. So they go to recess, they start to go back into the classroom, and my son won’t go into the classroom. He stops in the hallway, and he sits down.

So the behavior analyst sits next to him, and she said that she decided he couldn’t just sit there and do nothing. He doesn’t know who she is; he doesn’t know why she’s there, and she’s sitting next to him. She decides she’s going to start doing academics with him. She gets a piece of paper and it’s a word and there’s a letter missing, and she keeps telling him to tell her what the missing letter is. [Chuckles] He’s distraught; he doesn’t care what letter’s missing, and actually, she’s supposed to be observing. I have no idea why she’s doing academics. She said that he ignored her, and I have this in writing, since she actually had the nerve to file a referral. She said he ignored her.

Now, my son also has Tourette’s, so he has tics. I know what ignoring means. He probably turned his back to her and was probably grunting. So she said that she continued to put the paper in his face and ask him for the missing letter. The next time, he ripped the paper. She said that she told him that he needed to do this, and she again put the paper in front of his face and asked for the missing letter. This time, she said my son slapped her on the forearm, hand area. She said that she told him if he did it again, she was going to have to hold him. So she put the paper in his face again. And of course, he slapped her.

Sharon daVanport: That’s provoking him. She was just asking for him to do it.

Tricia Kenney: Yeah.

Anna Moore: And this is an autism specialist, okay? Mind you.

Tricia Kenney: Wow.

Anna Moore: I have this in writing. She wrote this in a referral. I can’t even believe it. So then, she did it again. Of course, he slapped her. Now, they’re both sitting on the floor, so [Chuckles] I don’t know how she restrained him. They started, and he started fighting back. Now, keep in mind, this is the third time he’s been attacked.

Tricia Kenney: Oh.

Anna Moore: Apparently, it was just an all-out brawl is what it was. Now, the vice-principal, who I came to know very well and really like and really believe she had my son’s best interests at heart, I’m sitting outside on the benches, and the maintenance guy, he’s driving on the golf cart, and I hear on his radio: “We need assistance with Isaiah Moore. We need assistance with Isaiah Moore.”

And I’m like: “Oh, my God!” I go running into the school, and I’m screaming: “Where is my son?!” And I look to the right of me and I see the behavior analyst in the clinic and she’s washing her arm. So I open up the door; I look on her arm. There’s this huge bite—through the skin, everything. I was like: “Oh, my God!” I’m screaming: “Where is my son?!” And she’s like: “Calm down, Mrs. Moore. Your son is fine.” I said: “Did my son do that?” And she said: “Yeah.” I was freaking out. “That’s not my son!” It’s like, what are you people doing to my kid?

So we start walking back to where my son’s at, and she tells me that she would prefer to go in there and get him to answer the question she wanted him to answer with the missing letter.

Tricia Kenney: God.

[Crosstalk]

Sharon daVanport: Brilliant.

Anna Moore: Because he shouldn’t be rewarded with going home with me.

Sharon daVanport: Oh.

Tricia Kenney: Oh, God.

Sharon daVanport: Unbelievable. I wouldn’t believe this if I wasn’t hearing it. Unbelievable.

Tricia Kenney: Wow.

Anna Moore: And I have all this in writing. It’s unbelievable. The vice-principal goes and gets him and brings him out. Immediately, he runs and hugs me, and he thinks he’s going to be in trouble. I’m like: “You’re not in any trouble. Let’s just get out of here.” What my son told me was, when the woman was restraining him, she fell on top of him. And when she fell on top of him—and the vice-principal confirmed this—her forearm went in his mouth, and that’s why he bit her.

Tricia Kenney: Yeah.

Sharon daVanport: Oh.

Anna Moore: He wasn’t actually trying to bite anybody. She fell on him and her arm went in his mouth, and hell, yeah, he bit her. He was fighting for his life.

Sharon daVanport: Wow.

Anna Moore: So then again, I get him home. Now he has marks; I’m taking pictures. I again call my pediatrician. So that happened on th 24. My son’s birthday was the next day. He turned eight, and, again, I’m not bringing my kid back here. I don’t believe anything any of them say. Again, because I didn’t know where to turn. Actually, I don’t think I found Phyllis till around this part. I’m sorry; I think I found Phyllis around the third restraining. So I’m not sending my kid back. There’s no way he’s coming back. I had been working with CARD the whole time. I even had CARD come in to the classroom and try to help the teacher with what was going on. I’ve tried everything.

So it’s the 24, that happens. So then, he’s home. I’m not bringing him back. Of course, they’re telling me that I have to bring him back. So I again go in for a meeting. One thing I will say, the behavior analyst he bit, she did say that this child has been traumatized and should not come back to school for any more than 20 or 30 minutes a day. There’s no way you should be putting him in here all day.

[Crosstalk]

Yeah. We go over to the meeting, and we decide on him doing 30 minutes, and it would be in an ESE classroom. Now, Isaiah was always mainstreamed. Towards the middle of the year, when he was starting to show some issues around December is when this started, he was falling behind. So I asked for some more one-on-one reading. So that’s why he was in this classroom, what turned out not to be an ESE teacher. That’s a whole other…[Chuckles] I didn’t find that out till later, either, when I filed my complaints.

So I do again call DCF. I also file a police report. At this point, the police are treating me like my son’s the problem. First it was all on our side; now because he works at the school, he’s listening to everybody else and all the sudden, now it’s my son who’s the problem. I actually sat there for an hour and 20 minutes when I asked for the police officer to come down so I could file a complaint.

I watched him gather everybody involved in what happened to my son, take them in a little room. They all had a discussion long before they brought me in to file my complaint. He wouldn’t even come down at first. He kept telling me, the lady up front, that if I’m not filing an abuse report, he’s not coming down and all of this. So I told the lady: “Let me call my brother. He’s a cop. I’ll be right back.” So I called my brother and he said: “What do you mean they touched him again, Anna-Marie?” I’m like: “Yeah,” and he’s like: “You go right back in there and you tell him he’d better come down now and to bring his camera, because you want pictures.” And tell him, yes you are saying it’s child abuse. So I went back in. Mind you, I’m all by myself. [Chuckles]

Tricia Kenney: Right.

Sharon daVanport: Right.

Anna Moore: It’s just me. So I made him come down. They’re treating me like crap. I don’t care. So we go through all that. Ugh. And then, so we [unknown[ 30 minutes, but I asked to be in the classroom and the principal wouldn't allow me in the classroom. So I sat in the front office. I don't know why I did this; I just really don't, other than I didn't know I had other options. It all happened so fast.

Sharon daVanport: Right.

Anna Moore: The last one, which is just the worst. My son is lucky to be alive. He did his 30 minutes and everything went fine. And this is the ridiculousness of the whole thing. He was in his ESE classroom, so it wasn't in the classroom where everything was happening, where he was urinating on himself.

Sharon daVanport: Right.

Anna Moore: So it was really stupid. What are you going to get from 30 minutes in a classroom, where none of anything was going on? So he's in there for 30 minutes. This is on a Friday. He comes out, everything went fine. Now, this behavior analyst who is observing my son is a man. So he observes him, comes out, says everything went fine. No problems whatever.

So now on Monday, they tell me, before Monday they tell me they want him to do an additional 30 minutes. I said: "It's too soon. It's way too soon." So I told my son: "Listen," and he did not want to go. I said: "You're going to do your 30 minutes. They'd like you to do an additional 30 minutes, but if you can't do it, then you just tell them Mommy's in the front office and I said that it was okay for you to come home. And he said: "All right."

So he went, and I'm in the front office, and 30 minutes went by, and then another 30 minutes went by. Now we're approaching another 30 minutes, and I'm up at the desk, going: "Where's my son?"

Sharon daVanport: Right.

Anna Moore: And everybody's looking at each other, and I'm like: "Where is my son?" They're like: "Hold on, Mrs. Moore. I'll go find out," blah, blah, blah. Another 30 minutes goes by.

Sharon daVanport: So you're an hour and a half past time now?

Anna Moore: An hour and 20 minutes. Yeah, exactly.

Sharon daVanport: Oh, wow.

Anna Moore: I get called into a room. I walk into the room; there's a cop, there's the vice-principal and there's the behavior analyst. Now I'm shaking. I'm saying: "Where's my son?" I'm screaming: "Where's my son?" So I sit down, and they're like: "We're going to get him. We just want to talk to you," and I'm like: "No. I want my son now." So they bring him in, and his nose is beet, beet red and he pulls up the sleeve to his arm and I see all these red marks. And I thought I was going to pass out. [Pause] [Sniffling] I’m sorry.

Sharon daVanport: No; it’s okay.

Tricia Kenney: It’s okay. Take your time.

Anna Moore: So I said: “Go outside, Isaiah, and sit down.” I said: “Mommy’s going to take care of this.” So even the vice-principal’s like [unknown] the guy: “What happened?” And the guy says that Isaiah walked out of class, and as he was coming to the front office where I was, he passed his occupational therapist, and she said: “Isaiah, where are you going?” And Isaiah said: “I’m going home.” And she said: “Well, wait a minute. Let me find out what’s going on.” She didn’t even know what was going on. She said: “Sit down; I’ll be right back.”

So my son sits down. This wasn’t a kid that was running out of class. He was walking, so he told him to sit down. He sat down. So she went inside, and then here comes the behavior analyst. He’s telling my son to go back to class, and my son keeps saying: “My mother said she’s in the front office and I’m allowed to go home.” And he keeps telling him that he needs to get up and go back to class. According to what he wrote, this went on for ten minutes, five or ten minutes. I forget what it was, and it’s [unknown]. But [sighs] in his notes he says my son was having loud vocalizations. My son has Tourette’s. [Chuckles]

Sharon daVanport: Right.

Anna Moore: Of course he was having loud vocalizations. So when my son wouldn’t get up and go back to class, he proceeded to restrain him. Now, I get all of this later, because nobody’s telling me crap in that room. All I got was this guy saying he thinks his watch caused the scratches and the vice-principal said: “If it was your watch, how come he has it on the other arm?” And the guy said he doesn’t know. I asked the guy: “Didn’t you read my son’s file? Didn’t we discuss this?” He’s like: “I don’t have to read your son’s file—behavior’s behavior and you address it the same.”

Sharon daVanport: Oh, my goodness.

Anna Moore: Yeah.

Sharon daVanport: Oh, wow.

Anna Moore: School behavior analysts are scary. And to this day, I’m afraid to tell a parent to ask for a functional behavior assessment.

Sharon daVanport: Right.

Anna Moore: That’s a whole world I never knew existed. So I just want to get out of there. The cop’s asking me will I sign a waiver or whatever. I’m like: “I’m not doing anything. I can’t even think right now.” My brain shut down. [Chuckles]

Sharon daVanport: Right.

Anna Moore: [Unknown] that burning sensation up your nose. I thought I was going to pass out. All I could say was: “I can’t believe this.” I kept saying: “I can’t comprehend this right now; I can’t process it. I have to get out of here.” So I took my son, called my pediatrician. He said: “Bring him in here now,” and [pause], and remember I said his nose was red.

I kept asking everybody in the room: “Why is his nose red? What’s wrong with my son’s nose?” And everybody kept saying: “We don’t know; we don’t know.” And the cop is telling me that he heard screaming out on the walkway between the two buildings. Now, this is a gated school, and there’s cameras everywhere. It is a pilot program, okay? It was the only one of its kind, and it was called WOW—Working on the Work program. It was supposed to be a reform for public schools. So there’s cameras everywhere.

Sharon daVanport: That’s a little scary.

Anna Moore: Yeah, but the never caught any of the restraints. So the cop is telling me all he heard was screaming. He was on the second floor; he leaned over and he saw what looked like a father talking to his son. So he didn’t think anything of it. So he’s telling me: “I didn’t see anything inappropriate with your son, but I wasn’t in the room. I just looked over the thing.” This is the stuff I’m getting from these people.

So nobody’ll answer me. So I get to the pediatrician, who then takes his shirt off, and there’s marks everywhere. My pediatrician starts yelling: “Somebody tied something on his arms!” And I’m freaking out, and he just realized he freaked me out, because now I’m screaming: “What do you mean? What do you mean somebody tied something on his arms?” [Tearful pause] And I said: “They’re scratches, right?” And said: “These aren’t scratches. It’s bleeding under the skin.” [Tears]

Sharon daVanport: Oh, my. So they had tied him up, then. Wow.

Anna Moore: No. He used such excessive force that he [unknown] my son’s polo shirt into his skin.

Sharon daVanport: Oh, I see. Okay.

Anna Moore: So the threading on the arm, [unknown] the threading there, it was so tight that caused this bleeding under the skin.

Sharon daVanport: Oh, okay.

Anna Moore: My son could [unknown], and his back and ribs were bruised. He had bleeding under his skin underneath both arms; on top of both arms; underneath his armpits, all the way down. He had a [unknown].

Sharon daVanport: Anna, this was all because, basically, your son was following your instructions.

Anna Moore: Yes.

Sharon daVanport: And he was saying that you told him: “If you’re ready to come home, just let them know and I’ll be in the office.” It was all because of that.

Anna Moore: Yeah.

Sharon daVanport: Wow.

Anna Moore: And they knew I was in the front office. They knew I was in the front office.

Sharon daVanport: [sighs] Oh, man.

Anna Moore: But the point I want to make is, it wasn’t a kid running out to get to the front office. The OT—

Sharon daVanport: Well, even if a kid was running out, that’s not a reason for restraining and secluding him. It’s just not…my goodness.

Anna Moore: That’s the other point. The school’s gated. It wasn’t like he was running into a parking lot, but he wasn’t even running. He was walking.

Sharon daVanport: Right.

Anna Moore: His back, his ribs are bruised. He can’t move his head backward. I get him to a pediatric orthopedic, and it turns out he had a cervical strain.

Sharon daVanport: Oh, my goodness.

Anna Moore: He couldn’t even put his head back [unknown]. My son told me when he could finally talk with me, he said that when he criss-crossed his arms across his face—because, again, I filed a police report, and again I called the abuse hotline. And the guy from the abuse hotline came and my son was showing him how [the behavior analyst] crossed his arms. But when he crossed his arms, he crossed his arms across my son’s face, so my son couldn’t breathe. He said: “My mouth and my nose were covered, Mommy, and I couldn’t breathe.”

Tricia Kenney: Oh.

Sharon daVanport: Oh.

Anna Moore: We found out his lip was busted also, and my son told me that the cop kept telling my son to quit sucking on his lip. They got him something to clean his face up, because there was blood on his face, before they brought him in to see me. Now, this is the same cop who told me he wasn’t around my son, remember?

Tricia Kenney: Ugh.

Sharon daVanport: Oh. What a cover-up they tried to do. My goodness.

Tricia Kenney: Well, of course they’re going to do that. They don’t want to get sued; they don’t want to get in trouble. How could any person with a brain not know that what happened was wrong?

Sharon daVanport: So that our listeners can understand, Anna, and so we can get to some different options that parents have when it comes to advocating for their child in these situations before it ever gets to this, hopeully, basically, what were you able to successfully do in your son’s case, from all of this that happened?

Anna Moore: I sued them; there was nothing else I could do, but. DCF found that this man abused my child, and the police wouldn’t do anything, and neither would the state’s attorney’s office. But if it was you or I who did this to a child and they found that we abused them [unknown]

Tricia Kenney: Right.

Sharon daVanport: They’d take our children away. [Chuckles]

Anna Moore: Yes, they would, and it’d be front-page news. My son was called “unruly” and things like that. Of course, people that knew us knew that just wasn’t so. So I don’t know. I followed all the right ways. I love CARD; I think they’re great. But when it came down to this, they received funding from the Florida Department of Education, and there’s only so much they can do. When it gets to this point, they can’t help you. That’s just not their function.

Tricia Kenney: So you had to hire an attorney.

Anna Moore: Yes. Because he was injured, they would handle it pro bono. It took me six months to find an attorney. I was beating on everybody’s doors; everybody said no.

Sharon daVanport: No one wanted to touch it, did they? Yeah.

Anna Moore: Nobody wanted to touch it. And at that time, nobody had footage of restraint. I got footage. They told me no, because I knew that it was videotaped. So I educated myself online with Wrightslaw. So they said because of other kids, I couldn’t have the video, and I found out that that’s just not true. Under FERPA law, that video is my son’s educational record if he is in that video, and I have every right to it. So I claimed FERPA law, and they need to follow the law and provide me with the tape. And they did, but of course the only part they gave me, which is on YouTube, is them dragging him from the first restraint area into the little room where more restraint went on. Now, keep in mind, all I have is what my son’s telling me. Nobody else will tell me anything.

Sharon daVanport: You couldn’t get the other stuff? You couldn’t force them to give you the other tape?

Anna Moore: No.

Sharon daVanport: Why is that?

Anna Moore: They said the camera didn’t work.

Sharon daVanport: Oh, of course. [Chuckles] How convenient. Wow. How convenient.

Tricia Kenney: I got the same story from the bus company when my child was tied up. We couldn’t find any definitive footage. I’m like: “Why can’t I see the tape?” and they’re like: “Well, there’s nothing on there to see.” Yeah, these convenient things come up.

Anna Moore: Well, here’s where it gets really weird. I decide I’m going to the cop’s office, because more information came out. I found out this person had multiple DUIs—pretty ironic, a behavior analyst who can’t control his own behavior.

Tricia Kenney: Umhm.

Anna Moore: He got one a month after he hurt my son, and this man was training all people in St. Lucie County—the whole district—to restrain.

Sharon daVanport: And basically was a drunk. Oh, wow.

Anna Moore: Yeah. That’s what I would say.

Sharon daVanport: Well, I don’t mean that loosely. I mean documented. He did some things that were not legal. [Chuckles] You know.

Anna Moore: I’m sorry, but if you get caught four times driving drunk, you drove a whole lot more times than that before you got caught.

Tricia Kenney: Umhm.

Anna Moore: So I get this tape. I come home; I’m scared to play it because I don’t know what I’m going to find on it. So I play it and, sure enough, they cut it so much. You could see where it jumps and jumps.

Sharon daVanport: Wow.

Anna Moore: It’s an hour and 20 minutes [unknown] that tape. But when my son comes out of that little room, you never see who goes in the room. Just my son and the analyst. Now, when the door opens, here comes all these people: the vice-principal, the head of ESE, the cop. So when I went in his office, I said: “I thought you said you were never around my son.” And he said: “I wasn’t.” I said: “Yes, you were.” And he got up, screaming in my face: “Are you calling me a liar?” and he’s all red.

Sharon daVanport: Oh.

Anna Moore: I said: “So what? I am calling you a liar.” I said: “Play this.” He played it; his whole face turned red, and he said: “Who gave you this?” and I said: “The school board.” And he said: “Well, let me show you the full tape.” And I said: “Okay.” So he started playing it. They have the full tape.

Sharon daVanport: Oh. So they lied to you about that, too?

Anna Moore: Yeah.

Sharon daVanport: They actually had the full tape. Okay.

Anna Moore: But how do I prove it? How do I prove it? I got another detective to come in, and nobody would do anything. I let my lawyer handle it, and they settled. And I have to tell you, usually school board attorneys are vicious. They chew parents out. This guy either has a grandson or somebody with special needs, because he was nothing but very nice to me. And when they settled and we went in to let the judge sign off…I can’t say how much. That’s the only thing I’m gagged to, but he said: “Mrs. Moore, I just want to tell you that because of what you did, you made a lot of change in St. Lucie County, and I really, really hope that your son is okay and I’m very sorry that that happened.” And I said: “Thank you.”

Sharon daVanport: Whatever happened to the man that was a behavior analyst that you described as couldn’t control his behavior because of the drinking and driving incidents? What happened with that?

Anna Moore: He was never charged. I don’t know if you know this, but the behavior analysts, there’s a site you can go to and you can see who’s certified and who’s not.

Sharon daVanport: Okay.

Anna Moore: And he just never showed up on there. He kept saying he was certified, and so I checked constantly. About ten months after this incident, all the sudden he popped up and he’s certified. So I don’t even believe he was certified at the time.

Tricia Kenney: Wow.

Anna Moore: And he claimed he was an independent contractor, which nobody told me. But they ended up claiming him, because he wasn’t insured or anything. So I don’t know. From what I know, he’s working at an alternative school, where they put kids that are kicked out of public school.

Sharon daVanport: [Unknown]

Anna Moore: Yes.

Sharon daVanport: Oh, he’s not in public schools, but he’s [unknown] possibly at another one. Oh, wow.

Anna Moore: Right. He said he would never work in St. Lucie County schools again, but I heard that he is at an alternative school. At the depositions—I wanted to be there, and I want [them?] to hear his depo—he tried to mouth to me: “I’m sorry.” And my attorney was like: “You can’t talk to her!” He started freaking out. I couldn’t believe that…Yeah, he tried to say he was sorry, but you almost choked my son. He couldn’t breathe. My son said his eyes started to close and he started to fall over.

Tricia Kenney: Ugh.

Sharon daVanport: Oh. So your attorney was successful? Did they actually settle out of court or did you guys actually have to go through a full trial?

Anna Moore: They settled out of court. After I depoed and the behavior analyst depoed, they pretty much offered up [unknown], they didn’t even deposition my son.

Sharon daVanport: Oh, that’s good. [Unknown] to go through that.

Anna Moore: They didn’t want to put him up against me. And they also said that the other behavior analyst refused to have any part in sticking up for the other one, so she stayed completely out of it.

Sharon daVanport: Really. Wow.

Anna Moore: So it was very weird. Do I have any advice for anybody? I don’t know. I believe I did everything I possibly could, and it still happened. So I just…I don’t know. My son is on the [McKay?] scholarship. Thank God for Florida. I can take whatever money they would’ve given him for public school; I can take that money and go anywhere I want, so he’s in a private school. It’s not a special needs school; it’s just a small, private school. My son is just flourishing.

Tricia Kenney: Oh.

Sharon daVanport: Oh, that’s good, Anna.

Anna Moore: His report card was all As, one B. That’s the best he’s ever gotten. He struggles academically, and this is why my son was abused. [Chuckles]

Sharon daVanport: Oh, wow. Anna, I’m going to let Tricia finish up. Tricia, I was just going to tell Anna, I was just going to excuse myself and let her know that you’re finishing up the show today. I actually have a meeting at my son’s school, so I’ve got to get going early. Tricia’s going to finish up the hour with you, but thank you so much for being our guest today, okay? You guys have a great rest of the show. I’ll talk to you afterwards, Trish.

Tricia Kenney: All right. Thanks, Sharon.

Sharon daVanport: Okay. Uh-huh, bye.

Tricia Kenney: Okay, Anna. What I was going to say is: What is the Families Against Restraint and Seclusion? What sort of moves are they making? What sort of progress is going on that people can maybe get involved with?

Anna Moore: Right. What we have is a bill right now, and they just changed the number on us again. So it passed through the House, and right now, it’s sitting at the Senate. What we need to do is get everybody calling and writing their senators, and the bill is S3895 Restraint and Seclusion Keeping All Students Safe Act. And what’s happening right now is they’re trying to change the language to allow restraint and seclusion into the IEP. We have to stop that.

The bill is good; it’s minimal language, but it will override state laws. Right now, Florida passed a horrific state law, so we really need this federal law. But if they put restraint and seclusion into the IEP, it’s not going to be good. It’s not an educational practice; it has no place in the IEP, and they’re actually trying to put it in there. They’ve got all kinds of people from the school’s side calling and pushing for this. We need parents; we need people calling, telling them: “No. Do not put that into the IEP.”

Tricia Kenney: This is not just statewide. This is for the whole country, right?

Anna Moore: Yes, it’s federal.

Tricia Kenney: Okay. Wow. Who is vying for that? Why would anybody think that that’s okay to do? Why would they try to include that in the school system?

Anna Moore: Because they don’t understand. They have the head of the administrators; they have the, they call it FAVA, they’re with the behavior analysts. They’re a national organization, and they’re telling them how aggressive our children are; how teachers are getting injured because of our aggressive, unruly children, and they use that word “unruly.” It just blows my mind. They’re provoking our children, whether intentional or unintentional. They do not know how to work with our children. And disabled children in public schools are being abused because of this. And that’s another thing that the bill would provide. It would provide training. We would have quality people working with our kids.

Tricia Kenney: Yeah, and I think that’s something that really is neglected in the school system, and there are people that are even opposed to it—getting more training in for teachers to deal with special needs students. rAnd that’s so silly to me. The teacher doesn’t want to learn? [Chuckles]

Anna Moore: Right. They don’t. They’re like: “I didn’t sign up for this,” and that’s what I had with my son was the main problem. That she didn’t sign up for this. She was a regular education teacher.

Tricia Kenney: But this is children of all ages, shapes, sizes, learning differences, whatever. This is America, this is the world.

Anna Moore: That’s right.

Tricia Kenney: We should be able to send our children to school without worrying about them being injured or dying.

Anna Moore: That’s right.

Tricia Kenney: I know how scary your situation was, but there’s so many stories out there, where children just never ended up coming back home.

Anna Moore: That’s right. [Unknown] realize how many children have been killed in public school settings.

Tricia Kenney: I know. It’s sickening; it’s absolutely sickening. And for what? Just because they went to school that day.

Anna Moore: That’s right. And my son can talk.

Tricia Kenney: Oh, I know. I know. That’s the scary thing. A lot of us have children who cannot express to us what happened throughout their school day. You ask them every day: “How was school?” They give you the same answer; they never give detail, if they talk at all.

Anna Moore: Yeah.

Tricia Kenney: And it is just, it’s scary to think that all kinds of things could be going on and you have no idea. I know a lot of parents really would like for there to be cameras in the classrooms.

Anna Moore: Yes; yes.

Tricia Kenney: And I think that would be just wonderful, if they were actually….

Anna Moore: It would be good for both of them. It would be great for the teacher, too, who, if she’s not doing nothing wrong, why would you be opposed to it? It would be covering you, also.

Tricia Kenney: Right; right. It’s really tricky, though, because you have to think: Well, what if they know there’s a camera in there, so they take the child to the bathroom to do it, or whatever? So there’s always those kinds of questions, but it’s a start.

Anna Moore: It is. And the problem is, they don’t understand autistic children. They just don’t understand them. They used words like “defiant” on my son, things like that. A child was punished, put in seclusion, because he wouldn’t look the teacher in the eye. An autistic child. [Chuckles] I don’t know.

Tricia Kenney: Unreal. Unreal. I’ve heard just outrageous stories as well, where a child wanted their jacket because they were cold, and they got restrained.

Anna Moore: Yeah; yeah.

Tricia Kenney: And it’s like: What? It’s so utterly ridiculous. How are these people in school systems?

Anna Moore: I know.

Tricia Kenney: How are these people around children?

Anna Moore: [Unknown]

Tricia Kenney: Yeah. Why aren’t there stricter screening processes going on in school systems, so that these people can be weeded out, to lower the chances of children being hurt by them?

Anna Moore: [It seems that?] they want to go back to the old days. They want our kids in a separate school. Yet, our children bring quite a bit of funding into those schools, and they’re using that funding on areas that aren’t for our children. [Chuckles]

Tricia Kenney: Right; right. And they’re not even getting the trade-off that they’re supposed to. They’re supposed to be getting special services, and half the schools lie about that.

Anna Moore: Yeah; yeah.

Tricia Kenney: It’s really, really a big mess. Do you think the bill that’s out there right now would really help change things?

Anna Moore: It’s a start, and it is minimal language, but it’s good language, as long as they do not add restraint and seclusion into the IEP. They don’t realize that parents aren’t on a level playing field when they walk into that room, and it’s you with ten of them. They don’t understand that, and they think: “Well, the parent can decide whether they want it in there or not.” It doesn’t always work that way. Or they’ll tell a parent: “We don’t really use it. It’s just in case, and it’s for his protection.” Who’s going to watch how it’s being used, or how a parent’s being told what it’s for?

Tricia Kenney: Right. Exactly.

Anna Moore: They are their own entity and they’re policing themselves.

Tricia Kenney: Yeah. Yeah, that’s not scary at all, is it? We do have a caller, from a [area code]. Hi there, you’re on the air.

Amy Carabello: Hi, it’s Amy Carabello. How are you, Trish?

Tricia Kenney: Hi, Amy. Glad you called in.

Amy Carabello: Hey, no problem. Hi, Anna, how are you?

Anna Moore: Hi, Amy. How are you?

Amy Carabello: All right. I was just calling because I wanted to add to some of the things Anna had mentioned about the bill, the R and S bill that’s on the plate. Right now, a very, very savvy advocate I worked with in the past, he had worked at a residential treatment facility and he was high up in the ranks of management. He said at one point he decided it was time that they train the staff on proper use of R and S, restraint and seclusion, for protective purposes so that they were doing it properly. He said after the employees were trained, the amount and number of people being restrained increased 100 percent.

Tricia Kenney: Wow.

Amy Carabello: So it’s this tool that when you have it in your back pocket, it gets used. It’s gets used, and it’s not a last resort. It becomes a use for coercion and enforcing rules and things like that. So I think one of the big problems is, when they say: “Well, we can put this in the IEP as long as the team agrees upon it,” they’re really breaking federal law, in a sense. If you look at the facilities that are separate from the school districts, they are not allowed to use restraint and seclusion on mental health patients who are violent in their facility without a doctor overseeing it and so many staff members.Somehow, because the schools aren’t under the medical, they’ve gotten out of having to abide by that law, and there’s been some controversy over whether or not that’s even legal.

Anna Moore: Yeah.

Tricia Kenney: Wow. Well, I don’t think it should be legal in any way, shape, or form. I still don’t understand why anyone else on the planet would have a legal right to touch my child. I just don’t get that. I don’t understand why there’s any conversation going on about it. Isn’t it cut and dry? Don’t touch my child.

Anna Moore: It’s actually for imminent danger, and that’s not what it’s being used for. It’s being used as first response.

Amy Carabello: And we have to really think about the fact that if a mental health residential facility or a short-term facility for people who have very significant mental health issues, presumably, are not allowed to use restraint or seclusion as a means to calm their patients when they’re very violent, why is it that school districts are allowed to use it on children who don’t necessarily have this level of issue? And so that’s where everybody turns their cheek, and it is a mentality problem.

Anna Moore: Yeah.

Amy Carabello: And when it comes down to the employees, what I’ve found and I’m sure, Anna, you’ve found is, well, it’s not always the teachers. It’s not always the aides. They’re implementing it, but they’re being instructed to do so by the administrators. And so it’s not a screening problem, so much as it is a mentality problem. I hate to say this, but a lot of times our administrators are burnt out teachers who have gone back to school and decided to become administrators. So they’re old-school. They’re thinking: “Back in my day, if a kid acted like that, we got out the paddle, and we’re not allowed to do that anymore. So now what we’ll do is this.”

And so you are seeing them use these treatments for things such as noncompliance, as with our case. I don’t know the level of details of what went on with my son, but my son was in restraints and seclusion almost every day of first grade for half a year, and they weren’t documenting it, so it didn’t happen. [Chuckles]

Anna Moore: Nice.

Amy Carabello: So that’s part of the problem is just the whole mentality of the entire district, all the way up to the school board.

Tricia Kenney: Wow. So what happened with your school district, Anna? Do they implement restraint and seclusion at all anymore? Do they do that at all? Did that change?

Anna Moore: I’m sure they do. The people at the school where my son was said: “Seclusion doesn’t happen anymore.” They said: “That’s illegal.” Meanwhile, there are schools that have it. Are they still using it? Personally, I don’t know, but I’d have to say, probably. I know they have a lot of schools that are now Positive Behavior Support schools. They received the training, which is free, by the way. Nobody understands why they’re not bringing this in and using it.

So I don’t know. I’m out of that school system. I was told that they did make a lot of changes based on what happened to my son, and I would have to assume that they have made those changes. There are good people in there.

Tricia Kenney: Yeah.

Anna Moore: But it’s just very wrong, what happened.

Tricia Kenney: Oh, definitely. And Amy, as well. I know you went through some horrific things with your school system. Did anything happen in your school system? Have they improved? Have they stopped doing those practices? Are they better now?

Amy Carabello: Again, like Anna said, we unfortunately in Pennsylvania don’t have as many protections legally when something goes wrong like this in the school district. The police won’t touch that. They don’t consider that their jurisdiction, and there’s been a lot of problems with even trying to go to federal court on this, because federal court makes us go through the due process. I call it “fake school court.” [Chuckles]

Anna Moore: Yeah.

Amy Carabello: Unfortunately at the time, there were no laws in Pennsylvania at all against restraint and seclusion. The school hadn’t documented anything, so it was our word against theirs. We did have a couple of witnesses who unfortunately were not forthcoming until after we pulled him out of the school. We would’ve had a little more information and probably would’ve pulled him out a lot sooner.

But the school district denied it up until the pre-conference hearing, which again, was just school court. It was our attorneys, the administrator and us. Basically the administrator continued to lie until I called her to the plate and got her [Laughter] feathers ruffled, and then she finally said: “What would you have us do instead?” And my attorney looked at her and said: “Do you mean to tell me that you’re saying that…” in our son’s case, it was two adults sitting on him in a prone restraint.

Anna Moore: Mm.

Amy Carabello: They sat on the floor, and we know that that happened more than once. We don’t know how many times. I think that I have documented somewhere back in my history about 20 or 30 times, but there’s more, I’m sure. She just looked blank and then her attorney looked at me and said: “What can we do to fix this?” I said: “Go back in time.” So basically, they settled because they knew we had witnesses. They knew that we would win in a due process case, which then, after due process, we would be able to take it to federal court. We were so wiped out from all of it we settled with them, and again, like Anna, I can’t disclose the terms of the settlement agreement, which is the monetary end of it. That’s the only thing I’m gagged on, so I made sure that in our agreement I was able to talk about what happened.

Anna Moore: Yeah, me too.

Amy Carabello: The school district still denies that they’ve ever done this, so whether or not it’s happening now or not, most everybody I know who has a child in that school has pulled them out. But it’s almost more than just a district problem in our area. We have these little sub special education groups called intermediate units in Pennsylvania that are supposed to be the oversight, and they’re supposed to do the training and assistance for the school district. Really what they’ve turned out to be is they create they’re own segregated, self-contained environments and then get kickbacks from the school districts for tuition and all this crazy stuff.

So basically what the school districts want to do is move all these kids into special needs classrooms where they’re completely segregated from everything. They don’t get any involvement in the schools, and they’re not being taught. They’re just babysitting.

Tricia Kenney: Wow.

Amy Carabello: So most of the kids in our area are in those classrooms. Those that are “included,” if they’re the kind that are the quiet kids that go [unknown] themselves, they muddle through. The kids that have a little bit of explosive behavior, they’re getting kicked out or they’re being pulled out by their parents and homeschooled.

Tricia Kenney: Wow. Do we have any numbers about how many states in the United States do have laws about restraint and seclusion? Do either of you know?

Amy Carabello: I know that there are numbers somewhere. I’m thinking even if you go to the Government Accountability Office. Anna, I’m not sure if you know, but I think they do have some numbers and statistics, and some of it’s changed. We had some revisions done to the Pennsylvania special education code a few years ago, and during that time period there was a coalition that got together and got at least some language put in regarding restraint and seclusion. But again, it only outlawed prone [restraint], and it also allowed for it to be written into the IEP. So it’s just a fluff at this point, because we don’t have any compliance or oversight, so nobody is checking to make sure that schools are following these rules.

Tricia Kenney: Right. Wow. Well, thank you so much for calling in, Amy.

Amy Carabello: No problem.

Tricia Kenney: I do appreciate your input on this, and I know it’s a subject that touches so many of us in the autism community. It’s really tragic, how many of us have had to deal with this on some level. I’m glad your son’s doing better, and Anna’s son as well. And my son’s doing better, too. [Chuckles] I had to pull him out of school, too. It’s unreal. All we want is an education; all we want is for them to be included in a classroom like any other child, and to get an education. I don’t see why it has to be so hard. And then these kids get scarred from it, they get damaged, and how much time is lost? How much of their learning process is disturbed because of this?

Anna Moore: My son still has nightmares.

Tricia Kenney: Yeah. It’s so, so sick, because these are real lives that are forever damaged.

Anna Moore: Yes.

Amy Carabello: I think Anna could probably tell you, too. My son’s IQ scores dropped [Chuckles] during that time frame, because of the trauma. Now we’ve established that that was post-traumatic stress disorder, but it affects them in every aspect. We’re still deprogramming this. It happened to us in 2005 through the beginning of 2007, and we’re still deprogramming it now.

Anna Moore: Yeah. It’ll be baggage they carry. My son started eating excessively. He put on 40 pounds in three months.

Tricia Kenney: Wow.

Anna Moore: We would wake up and his [unknown] would be full of bowls and dishes. He would wake up at night, stay up and just eat.

Tricia Kenney: Aw. And that affects his health, too.

Anna Moore: Yeah. Yeah.

Tricia Kenney: Ah, just so many long-term issues to deal with. But I do really appreciate you both being here with me today. Amy, again, thank you for the input. So we know Pennsylvania has an issue to deal with. We know Florida, they’re working on stuff. Missouri has no laws right now against restraint and seclusion, and granted, it’s 2010. There shouldn’t have to be. But it is an issue, and it’s affecting a lot of people. So I hope that people do call their legislators and put their voice in. Even if you don’t have a special needs child, this could happen to anybody.

Anna Moore: Yes. There is a group, Trisha, in [Calvin-Lucher?] that do have a toll free hotline number that they’ve put out for no restraint, no seclusion. That’s if you would like to put that out there.

Tricia Kenney: Yes, please do tell us.

Anna Moore: Again, it’s Trisha in [Calvin-Lucher?], their website is OurChildrenLeftBehind.com. The hotline phone number is 1-877-622-5176.

Tricia Kenney: Okay. Well, thank you so much for that, Anna. Get involved; make some phone calls. It doesn’t take up your whole day. It can mean the difference between life and death for a child, and it could be your child. It could be anybody’s child. This is just outrageous that it’s happening in this time, but it is, and it needs to stop. It’s not just something that happens to really disruptive kids. It happens to kids who ask for a different pencil. It happens to kids who just are overwhelmed and can’t deal with the work. Maybe they’re sick, like Anna’ son was, and instead of being cared for, they’re hurt. No child should have to deal with that. No child should have to endure that.

So again, thank you both so much for being with us today. I really appreciate it, and good luck with everything you’re doing and we’ll certainly keep fighting for this.

Anna Moore: Thank you.

Amy Carabello: Thanks. Umhm. Bye-bye.

Tricia Kenney: Bye-bye.

Anna Moore: Bye-bye.

[Amy and Anna hang up].

Tricia Kenney: Okay. Well, thank you for joining us today, everyone. A really important topic. Again, please get involved. This involves every school. Whether you think you’re in a good school district or not, it could be happening in your school and you may not be aware of it. So find out; get involved and help protect the children, if you can. We will be joining you again next week. We’re having a show on gender and sexuality and autism, so please join us for that. It should be an interesting topic. It’s making a lot of headlines lately, and a really good discussion for us to be having. So please join us then, and take care, and God bless. Bye-bye.

[End]

[Music]

Sharon daVanport: Hello, everyone, and welcome to AWN radio. We are the Autism Women’s Network on Blogtalk. We’re streaming to you live over the Internet from the beautiful Midwest, USA. I am your host, Sharon daVanport, and today is Monday, November 15, 2010. In just a few minutes we will be bringing on our guest for the hour, Professor Baron-Cohen.

First, we have one quick announcement. To enter AWN radio’s monthly prize giveaway that we’ve been doing for several months now—our sponsor, LifePROTEKT, you only need to submit your story to us here at Autism Women’s Network, as to why your loved one would benefit from a GPS location device. Our e-mail address fo that entry is info AT autismwomensnetwork DOT org. We wanna thank everyone for their entries, and just know that once you submit your entry, it is good for a year. Good luck.

Now, without further ado, we want to bring on Professor Simon Baron-Cohen, and we’re very pleased that he’s joining us today. We’re especially pleased Professor Baron-Cohen is a part of our advisory board for AWN, and we were happy that when we first contacted the professor, he asked a lot about the network, looked into it. Our advisory board is set up in a way that we wanna have a very diverse membership. If a lot of people go over to our website, they will see that a lot of our advisory board members have different community involvement for autism, and bring a lot to our community in very many different ways. We wanted that diversity so we could draw upon them when we need their advice. So we thank Professor Baron-Cohen for that. So, professor, I’m so glad that you could join us.

Professor Simon Baron-Cohen: Hi, Sharon. It’s a pleasure to be on your show.

Sharon daVanport: Thank you; thank you. First we wanted to start off with what you are currently doing. We’re going to also get to a lot of what you’ve done in the past, and what you’ve authored. I especially appreciate the DVD by Jessica Kingsley that you’ve done. I think maybe I’d like to start there. If you could let us know a little bit about that, about Mind Reading.

Professor Simon Baron-Cohen: Okay, sure. Well, our research looks basically at the causes of autism, [the] autism spectrum, but also at interventions: what might be helpful. And the DVD is an example of some of our research, to see whether we could teach emotion recognition to people on the autistic spectrum. Emotion recognition is sometimes an area of challenge for people with autism or Asperger’s Syndrome, particularly reading emotions from faces and reading emotions from people’s voices.

So the DVD is called Mind Reading, and it’s effectively like an encyclopedia of emotions. That sounds a bit dry, but on the DVD, what we’ve put in there are actors and actresses showing facial expressions of every human emotion, but also vocal intonation of every human emotion. And it was a fun project to work on, because the first point, the starting point, was: How many emotions are there? We identified at least 412 different emotions. Then we had to get the actors and actresses to perform each of these, and when you put the DVD into your computer, you can select what emotion you want to learn about. You can see what that emotion looks like on a male face or a female face, an old face or a young face, somebody of different ethnicities, and effectively just get an opportunity to practice or learn to recognize emotions.

Sharon daVanport: I just thought of something I think is quite interesting. You said the facial recognition tool helps those of us on the spectrum to see what a male as compared to a female face would look like when you’re observing different emotions. And of course, that’s going to lay later into your work about that aspect of it.

Professor Simon Baron-Cohen: Sure.

Sharon daVanport: But can you explain? I think that is so interesting, because that is one reason why the Autism Women’s Network has been so important to so many people: we are trying to show that there is a difference in female autism.

Professor Simon Baron-Cohen: Right.

Sharon daVanport: And females are different anyways, so. [Chuckles]

Professor Simon Baron-Cohen: Sure. You’re touching on a second area which is very interesting, about whether autism may be different in men and women, boys and girls. When we did our initial research for the DVD, we weren’t really looking at sex differences, or what in the US you call gender differences. We were simply focused on people with autism versus people without autism, so group differences of that kind.

But you’re absolutely right. In recent years, and one of the reasons why it’s been so important to set up the AWN is because more females are being diagnosed with autism, and research really has to investigate whether autism manifests itself differently in females compared to males.

Sharon daVanport: And the research that you have done yourself, can you give us your professional opinion and share with our listeners what you’re finding out so far as to why that is—the differences and why? We know that females like myself typically are diagnosed later in life.

Professor Simon Baron-Cohen: Yeah.

Sharon daVanport: We tend to mask better. Can you explain that for our listeners?

Professor Simon Baron-Cohen: Right. Well, I think at the moment, what we know about females with autism is very little. So what that means is that people like me in the research community need to be addressing females much more than we have in the past. So in the past, for many different reasons, most research either just focused on males or they combined males and females, but didn’t really look at them separately. I think what’s happened in recent years is that more and more women or teenage girls have come forward to seek a diagnosis and this is something new, because in the past we thought that the sex ratio in autism was about four males for every one female, and we just don’t know. That may be changing as more females come forward seeking a diagnosis.

You mentioned some interesting speculations, which is that girls may be better at masking their autism so they may end up receiving their diagnosis later, if at all. If a female with autism is really good at masking their autism, they may compensate to such a degree that they don’t need a diagnosis.

Sharon daVanport: Okay.

Professor Simon Baron-Cohen: But others find that they’re struggling in adolescence or in young adulthood, and that’s a time when they might seek a diagnosis. We know that for boys, they tend to get their diagnosis much earlier, in childhood.

Sharon daVanport: Okay. And with the tool also that is represented on the DVD, you speak of ethnicity and the differences in different ethnic facial expressions. Can you speak to that?

Professor Simon Baron-Cohen: Yeah, sure. Well, the reason for having a diversity of faces on the DVD is because when you’re wanting to learn to recognize a particular emotion, everyone shows emotions slightly differently. You can’t really with any precision say that everyone is going to show the same emotion in the same way. So what we did just as an effort toward recognizing that diversity is have six actors and actresses portray each emotion, and we included both sexes and a range of ethnicities, just to get some diversity. You could extend that.

You could’ve had 100 different actors showing the very same emotion, and you’d have seen that it’s slightly different on each person. But obviously we had to keep it within practical constraints, so we just limited it to six actors. But even that allows the opportunity to try to learn to recognize an emotion on one person, and then to generalize it across five more people.

Sharon daVanport: Okay; all right. Now I would like for this to be a segue into the work you’ve done. You authored Mindblindness and The Essential Difference: Men, Women and the Extreme Male Brain. For me, that was the first book I read of yours. It was recommended to me when I was first diagnosed. Can you speak to our listeners about that and the work that was behind that?

Professor Simon Baron-Cohen: Sure, yeah. You’ve mentioned two different books there. One was Mindblindness, which was published back in the mid-’90s, and that was really just describing the difficulties that people with autism have in picking up on other people’s thoughts and feelings. But the second book you mentioned was The Essential Difference.

Sharon daVanport: And that was the one that I read first. I’m sorry. That was the one I read first. That was the one that was really…even the title just caught my attention when it was e-mailed to me to look into that.

Professor Simon Baron-Cohen: Yeah, okay. So that book was published in 2003, and what I was trying to do there was link autism to what we know about typical sex differences, both psychologically and ultimately in the brain. The way I did it was to first of all look at which of the areas that either boys are developing faster or girls are developing faster in terms of behavior and skill. The two areas that I focused on, first of all, in terms of girls, was empathy. That girls are developing empathy faster than boys in the general population, by which I mean the ability to put yourself into someone else’s shoes and imagine what they might think or feel.

In contrast, boys are developing stronger interests in systems of one kind or another—what I called “systemizing.” It might be figuring out how gadgets work when it comes to a new computer game. Or it might be some other kind of system, like mathematics. These differences are differences on average. They don’t apply to all boys and all girls. It’s simply when you compare males and females on average, you see small but significant differences emerging. And the way I related that to autism was to ask the question: Might autism be an extreme of they typical male profile, where you have an individual who is finding it difficult to empathize, but at the same time, they’re getting very focused on systems—what some people called “obsessional,” and a very narrow focus on a specific system.

So we’ve been exploring that both in terms of psychology but also ultimately, and in recent years, using brain scanning and other biological investigations to look at whether people with autism might be an extreme of the typical male pattern of development.

Sharon daVanport: Okay. What are some of the current research projects that you have going on that tie in to this topic?

Professor Simon Baron-Cohen: Right. Well, one of them looks at hormones measured in the womb, and we’re particularly interested in the hormone testosterone. It’s a sex hormone, and this hormone is of interest because it’s involved in brain development. So we know from animal research that testosterone levels influence the masculinization of the brain, and we’re looking at this in humans by measuring testosterone in the womb. The way we do this is to ask women who are pregnant and who are having an amniocentesis, where a needle is introduced into the womb to look at the amniotic fluid. We’re asking those women if we can measure the testosterone in that fluid. That testosterone comes from the baby.

Then later we wait till the baby’s born. This is all done during pregnancy. We wait till the baby’s born and we follow them up to see whether there’s any relationship between the hormone levels prenatally and how that child behaves post-natally.

Sharon daVanport: Okay.

Professor Simon Baron-Cohen: And what we’ve been finding is that the higher the baby’s level of testosterone prenatally, the less eye-contact the baby makes post-natally, and the slower they are to develop socially, and also the slower they are to develop language.

Sharon daVanport: Okay. Now, if in fact your research pans out to show that this is indeed an effect that contributes to autism, when you tie that in to a lot of people, there have been some researches that it could be genetic. So how does that tie in to it not just being something that happened in the womb as opposed to something that’s genetic and a neurological genetic component?

Professor Simon Baron-Cohen: Sure. That’s a really good question, and the way I see it tying in is that, first of all, the hormone levels that the baby’s producing are themselves under genetic control. We know that some genes influence how much of this hormone you make. You also asked how does it tie in to neurological development. Again, I mentioned earlier that both genes but also hormones can affect neurological development. So this is not a theory about hormones acting alone; this is a theory about hormones affecting brain development and being regulated by genes. So it’s quite a complex mix of biological factors. And of course, we shouldn’t forget or ignore the importance of postnatal experience, because ultimately all of us are the result of a mix between our biology and our experience.

Sharon daVanport: Oh, absolutely. And I think, hands-down, most people absolutely can see that and identify with that in their own lives. When it comes to the work that you’re doing and the research, what are some of the results telling you? Have you been able to obtain any initial results?

Professor Simon Baron-Cohen: So I think you’re asking about the hormone studies still—

Sharon daVanport: Yeah, umhm.

Professor Simon Baron-Cohen: —but in relation to autism. We have a large study underway in collaboration with Denmark, because in Denmark they have a very large bio-bank where they’ve been collecting amniotic fluid since the 1980s. And so they have tens of thousands of samples in the deep-freeze, and they also have a register—it’s called the Danish Psychiatric Register—which can tell you who has gone on in the population to develop autism.

So what we’re doing in collaboration with these Danish scientists is to look to see if there’s any link between the testosterone level in thousands of amniotic samples and the likelihood of having a diagnosis of autism. And that work is in progress. Up to now we’ve just been looking at typically-developing children, and that’s simply because many women who have an amnio, this medical procedure, just go on to have a typically-developing child. So so far, all we’ve been able to investigate are individual differences in the general population. But it is obviously important to see whether this is also relevant to autism. That’s for the future.

Sharon daVanport: Oh, very interesting. When it comes to processing all of this data, what do you do in your work in collaboration with Denmark? What are you doing? Is it a closed study? Is it open? Can our listeners who are listening contact someone to be a part of that study? How does that work?

Professor Simon Baron-Cohen: Right. Well, that particular study, obviously, the only people who take part are women who had amniocentesis.

Sharon daVanport: Oh, okay.

Professor Simon Baron-Cohen: So that’s a very small subset of women in the population. It’s only about six percent of pregnant women who choose to have an amniocentesis.

Sharon daVanport: Oh, okay.

Professor Simon Baron-Cohen: But we do have a range of other studies where we encourage people to take part, and people sometimes participate in research online. They go to our website, which is The Autism Research Centre People can take questionnaires which help us measure behavior. And then locally, that’s to say in the UK, where I’m based, people come to visit the lab if they’re wanting to take part in face-to-face testing, including brain scans.

Sharon daVanport: Okay. And you speak about the online research.

Professor Simon Baron-Cohen: Yeah, yeah.

Sharon daVanport: Can you speak to some of the questions and some of the data that you’re attempting to retrieve?

Professor Simon Baron-Cohen: Sure. Just to give you some examples, we developed a questionnaire called the Autism Spectrum Quotient, and it’s shortened to the AQ. This is a way of measuring the number of autistic traits a person has. It really fits with this whole new way of thinking about autism,which is as a spectrum. But instead of just looking at people who turn up to clinics, it’s looking at the whole population. And what we’ve been finding is that the number of autistic traits in the population is normally distributed—that’s to say, we’re all somewhere on that spectrum. People who end up with a diagnosis simply score much higher, but actually when you invite people randomly selected in the population to fill out the questionnaire, very few people score zero. Everybody scores something on that measure.

Sharon daVanport: Okay.

Professor Simon Baron-Cohen: Just to give you an example, a typical female scores about 15 out of 50, and a typical male scores 17 out of 50. What we find is that people on the autistic spectrum, people with a diagnosis, score around 30 out of 50—so much higher. But it’s giving us a clue that autistic traits really are on a continuum. Then we can look to see what that measure correlates with. We can see if it correlates with aspects of brain structure, for example.

Sharon daVanport: I find this interesting, that you brought up that particular research, because it’s quite popular over on the networking site Facebook. You see it posted every day. If you go over there, you see it posted every day. I’ve taken it; I took it last year and I took it this year. I’ve actually taken it more than once.

Professor Simon Baron-Cohen: Right.

Sharon daVanport: I have an admission, Professor Baron-Cohen. I tried cheating on it, even. [Laughter] What I mean by “cheating” is…well, first, my score was 48. That’s my score.

Professor Simon Baron-Cohen: Right. 48 out of 50, so that’s a very high score.

Sharon daVanport: I know. Very autistic, right? [Laughter]

Professor Simon Baron-Cohen: It’s almost to the maximum of the test.

Sharon daVanport: Oh, wow. Now, I did not know that. So what I did is I’ve gone back, and a couple times I thought: “Wow. 48? No, there’s just no way! Not 48!” It’s like when I first received my diagnosis. I’m like: “I’m not autistic!”

Professor Simon Baron-Cohen: Right.

Sharon daVanport: I compared everything to my son who’s on the spectrum, thinking: “No, I’m nothing like him.” I compared that male-female thing. So what I did, Professor Baron-Cohen, and I’m saying this only because I had dozens and dozens of people over on Facebook do the same thing. To contact me and say: “Oh, I tried cheating, too.” I went in and what I did is I answered something that wasn’t necessarily not what I would do, but it was just a grade more towards what I felt a non-autistic would do.

Professor Simon Baron-Cohen: Okay, sure.

Sharon daVanport: Maybe if it was my second choice. If it was my second choice I would do.

Professor Simon Baron-Cohen: Yeah.

Sharon daVanport: Even my second choice, I scored a 33. [Laughter]

Professor Simon Baron-Cohen: Okay.

Sharon daVanport: So I’m thinking: “Okay.” [Laughter]

Professor Simon Baron-Cohen: Yeah.

Sharon daVanport: But then, it’s always a 48. That’s interesting. It’s inteesting.

Professor Simon Baron-Cohen: Okay. So what you’re saying is even if you tried to mask it, because this goes back to what you were saying about masking your autism, you still score very high. So 33, we would consider in the clinical range.

Sharon daVanport: Oh, okay.

Professor Simon Baron-Cohen: But this test is not diagnostic, and I should really underline that.

Sharon daVanport: Right. And it does say that on Facebook; it does.

Professor Simon Baron-Cohen: Yeah. And the second thing I should say is that we didn’t post it on Facebook, so somebody has designed this as an app and put it up there.

Sharon daVanport: Right; right. It says that; yes, it does.

Professor Simon Baron-Cohen: It’s difficult to control the Internet.

Sharon daVanport: Oh, I know.

Professor Simon Baron-Cohen: People do all kinds of things. But because of what you’re saying, that people might try and cheat on their scores, we don’t think that Facebook is really the right way to do research.

Sharon daVanport: Absolutely; absolutely. If someone wants to really partake in research, how do you recommend that they go about doing that? Those of us on the spectrum, we need a step-by-step guide.

Professor Simon Baron-Cohen: Yeah. I think what’s been very exciting about recent medical research is a lot more funding has been channeled towards autism research, which means many more universities right across the US and across the world, really, are starting to carry out their own research. So depending on where you live in the US, it may well be that there’s a university near you conducting autism research. Certainly in all the main centers, in Los Angeles, in New York, in UC Davis, plenty of different places have centers of excellence for autism research, and they’re always very positive about welcoming people on the autistic spectrum who want to take part in research. So just contact either your local university or, certainly, one of the universities in the main hubs, if you like.

The other way to find out about research is through the International Society for Autism Research. So the acronym there is “INSAR,” and they list what’s going on in autism research, and finally there’s a very good charity called the Simons Foundation, whose website I recommend. They also illustrate the research, the new findings as they’re published. They’ve got an excellent team of science journalists who are interviewing the scientists and translating the latest research into ordinary language.

Sharon daVanport: Wow. That’s really good to know. I also wanted to see if you could help us appreciate what we should and should not be looking for when we’re looking into some of this research. Some may just be something that may not be beneficial, so is there a guideline as to what we want to look for in a particular research? I’ve been contacted [by people who] said: “I partook in this one research and it turned out to be just so bogus.” How do you really know what’s legitimate and what’s not?

Professor Simon Baron-Cohen: Sure. What I would advise is in terms of interpreting any evidence out there, you should always check: Has it been published in a scientific journal that uses peer review? This is very important, because the Internet is such that people can post up all kinds of things in a blog or on a website which looks like it’s science, but unless it’s been published first in a scientific journal as a result or following the peer review process, then we can’t trust it. So peer review, as you may know, is where other scientists scrutinize the evidence before it gets published. They try to find the mistakes, or they try to find the conclusions that are invalid. That’s really the only mechanism that we have for checking that science is done well.

The second important thing to look for is that if somebody’s conducting some research, has it been through an ethics committee? In the UK we call it an ethics committee, but I think in the US you call it a human subjects committee. But it’s really a panel of people, partly scientists but partly people from the general community, just checking that the kind of research is ethical; that it’s not going to cause suffering and that people understand and are giving informed consent. They understand what they’re letting themselves in for.

Sharon daVanport: Right. Okay. That’s very good advice. I will make sure I pass it on to those who contact us at the AWN and are asking us that question. We do receive periodic questions along those lines, because many people want either their child or themselves to be involved in some kind of research.

Professor Simon Baron-Cohen: Sure.

Sharon daVanport: They really want to either contribute or really want to know what’s going on with their child or themselves.

Professor Simon Baron-Cohen: Yeah. And I think that’s fantastic that families and people themselves who have a diagnosis want to help research. So we should really encourage them to come forward. I should say that most research is trustworthy. It does go through this ethical review, and it does go through a peer review. But it’s just to watch out for some things that you might read in magazines or newspapers. Always check: Has it first appeared in a scientific journal, or has it been through an ethics committee?

Sharon daVanport: Okay. This is a perfect segue to lead into getting your expertise and speaking to our autism community on why research is really so important. Why it is so important to leading the way in just so many ways.

Professor Simon Baron-Cohen: Yeah. Well, we started off by talking about interventions like the DVD, and I think that when it comes to treatments or interventions, research is absolutely important. It’s vital in order to conduct a systematic evaluation. Is the intervention actually helping? And that’s a question that research can answer. The way it does that is by setting up trials like treatment trials where you’re comparing a group of people with autism who are given a particular intervention, and then a control group who are not.

There may be other comparisons as well, but very importantly, the design of the experiment, the design of the research, should be such that it’s possible for the study to show either that the treatment does benefit or that it has no benefit. Research is the only way that we can do that. The reason why it’s important is that almost every year a new treatment is announced for autism, and parents may be understandably chasing after a solution or chasing after help, and they need to know whether they’re either spending their own money wisely or whether they physician or the insurance company or the school are spending their money wisely. Again, research can help to give impartial evaluations of new treatments.

Sharon daVanport: Okay. And we do have some callers on our switchboard today, Professor Baron-Cohen. A lot of people, it looks like. We’re not going to be able to get to more than…I’m sorry for all the callers, but I just looked at the time.

Professor Simon Baron-Cohen: Sure.

Sharon daVanport: We’re not going to be able to get to everyone on the switchboard today. But I would like to at least try to take as many as we can. I’m going to go ahead and go to the switchboard now. It looks like we have someone in queue. Let’s see here. [Area code], welcome to AWN radio. You’re on the air.

Caller: I wonder if that’s me. Can you hear me?

Professor Simon Baron-Cohen: Yeah.

Sharon daVanport: Yes, it is.

Caller: Okay. I was surprised I’m number one. Thank you so much for this program, and for the research and for spreading the news about this research. My question has to do with comorbidity. I have a daughter with Asperger’s who’s a late teen in college and was diagnosed about seven or eight years ago with colitis and Crohn’s. I know a lot a lot of autistic spectrum, there’s connections with gut issues. But about two years ago, she was alos diagnosed with polycystic ovarian syndrome, PCOS, which I don’t know a whole lot about. Obviously it’s a female thing, not a male thing. But in a nutshell, I know that part of what it has is or what causes it is a higher level of testosterone than most women would have in their system.

Professor Simon Baron-Cohen: Yeah.

Caller: And correct me if this [phrase?] is wrong, because I could very well not have that science right. So when I began to read, Professor, about some of your other research and looking at the testosterone levels in ASD, I said [unknown]: “What’s some of the connections here between something like that?” Could you speak to that, please?

Professor Simon Baron-Cohen: Sure. In fact, our research was I think the first to show a link between women with autism spectrum conditions like Asperger’s and polycystic ovary syndrome, PCOS. PCOS, as you know, is a separate condition which is characterized by irregular menstrual cycles and a late onset of puberty or menstruation, but also excess hirsutism or bodily hair. As you rightly say, it’s caused by high levels of testosterone and by finding that in women with autism there are elevated rates of PCOS, that’s giving us a clue that females with autism may have high levels of testosterone, and we’re going on to check that in our current research.

Caller: Great. Thank you. I appreciate that.

Professor Simon Baron-Cohen: You’re very welcome. More importantly, because I’m just describing some basic research, is that your daughter and other people like her need to be getting the right support. It is important that we do research into causes like hormones and genetics, but equally it’s very important that the right services exist, and I hope that your daughter is getting the right support.

Caller: Yes. We’re fortunate to be in an urban area with very good medical care and she has me for a mom, so she gets a lot of resources. We’re very fortunate in that way. And it’s good to know that you read things things, and you think: “What are these connections? There’s something there,” and I don’t know where it will lead, but I appreciate that research that you’re doing.

Professor Simon Baron-Cohen: Okay. Thank you very much.

Caller: Thank you.

Sharon daVanport: Thank you for calling in.

[Caller hangs up]

Okay. Well, I looked at the time again, Professor Baron-Cohen, and we’re heading towards the end of the hour. What we like to do on AWN radio is we like to end our show by giving our guest the opportunity to speak to either something that we perhaps missed in our outline that we had prepared for, or something as well that you can include that you want to speak to our audience about that you would like to share.

Professor Simon Baron-Cohen: Sure. I’d like to tie it back to something we were talking about right at the beginning of this program today, which is the idea that girls who may have autism may remain undiagnosed much longer than boys, maybe because they’re masking it better. And that was really a comment you made. It was a very interesting speculation. But what it would imply is that maybe girls who have autism try to deal with it in a different way, by imitating what they think of as typical behavior in the peer group.

This is something that certainly we’ve heard anecdotally. I’m not aware of any research which has actually tried to test if it’s going on, if it’s true. But the idea might be that if a girl who’s struggling with developing relationships and communication might decide to use their good language and their good imitation skills to copy maybe a popular girl in the class. And that strategy might help them for many more years, compared to boys, who may have either less motivation or less skill in masking or imitation. So this is really just throwing out a new research idea, and obviously, it needs to be tested.

Sharon daVanport: Well, I thank you very much for sharing that with us, and I want to thank you again for being our guest. We certainly look forward to having you back again in the future, and thank you again for being a part of AWN’s advisory board, Dr. Baron-Cohen.

Professor Simon Baron-Cohen: Not at all. It’s been a pleasure talking to you today, and I want to wish the AWN every success.

Sharon daVanport: Well, thank you. Thank you very much, and you have a lovely day.

Professor Simon Baron-Cohen: Thank you. Bye-bye.

Sharon daVanport: Okay. Bye-bye.

[Professor Baron-Cohen hangs up].

Okay, everyone. That is going to do it for us today on AWN radio, the Autism Women’s Network on Blogtalk. I want to remind you that we’ll be back same time next week on Monday, and our guest will be Anna Moore. Anna is a mother who recently won a lawsuit against her son being restrained, and she is a die-hard advocate against restraint and seclusion. It’s a show you definitely do not want to miss. Again, thank you very much for all of our listeners joining us, and we’re sorry we couldn’t get to all the callers on the switchboard, and we thank you again. Have a lovely day. Bye-bye.

[End]

[Music]

Sharon daVanport: Good day, and welcome to AWN radio. We are the Autism Women’s Network on Blogtalk. I am your host, Sharon daVanport, and today is Monday, November 8, 2010. As we announced last week, AWN Radio will now be broadcasting live on a new day and time. In the US, it will be Monday mornings, approximately 10:00 AM Central Standard Time, 11:00 AM Eastern, with an occasional time adjustment if our guest needs us to accommodate them. The call-in number for our show, as always, is [gives call-in number out]. You can use that number for the switchboard to either listen into the show, as many of our listeners do, and you can also choose an option to speak with the host and to either comment or have a question for the guest.

To begin with this morning, we have a few quick announcements. First, we appreciate all the stories and entries for our monthly prize giveaway on AWN radio, sponsored by LifePROTEKT. Remember, if you want to submit your story as to why your loved one would benefit from the GPS location device and one year of service, you need to submit your story via e-mail to us at info AT autismwomensnetwork DOT org. If you submit that to us in writing, we will enter your name into the contest.

One important note, though, to remember when you are entering the contest: please be aware that you need to have sufficient cell phone coverage in order for the GPS location device to work. So please understand this requirement when you’re submitting your entry into the contest.

Lastly, our show’s co-host, Tricia Kenney, had planned on being back with us today. However, her move back to Wisconsin took a few extra days longer than what she had expected, so she sends her hellos and she looks forward to joining back up with us next week when she will be hosting with us when we welcome our guest all the way from Cambridge in the UK, and that is Professor Simon Barron-Cohen. He will be spending the hour with us, so we hope you will be able to join us next week for what we expect to be a terrific show.

And speaking of terrific shows, today we are very excited to welcome to AWN radio our guest, Kristi Sakai. Kristi is an author, mother and public speaker, to name just a few things. And she’ll tell us about all the other things that she does. We’re very pleased that you could join us today, Kristi. Welcome to the show.

Kristi Sakai: Good morning. I’m very pleased to be here. Thank you for having me.

Sharon daVanport: Thank you. There’s just so much to talk about, and we were chatting just a few minutes before the show. I thought a good place for us to start, because I think your family dynamic is so interesting. So for our listeners who do not know, why don’t you introduce your family and tell us a little bit about each one of them?

Kristi Sakai: Okay. Well, I’ve been married 20 years to Nabul, who was diagnosed with Asperger’s Syndrome after two—or maybe it was after the third [chuckles—child was diagnosed. I have an 18-year-old son, a 15-year-old son and an 11-year-old daughter, all with Asperger's Syndrome, and they are very different. They have very different characteristics and strengths and challenges, and so it's very challenging to meet all of their needs.

Sharon daVanport: Wow.

Kristi Sakai: It's pretty interesting at times.

Sharon daVanport: [Chuckles] Now, how old was your first child who was diagnosed as being on the spectrum? How old were they when they received a diagnosis?

Kristi Sakai: Well, Tom was not diagnosed until he was eight years old. And as shocking as that is now, many of you have had that similar experience that people just didn’t know what it was only a decade ago.

Sharon daVanport: Right. Umhm.

Kristi Sakai: So it took many years to get a diagnosis, and by then we had two more kiddos. And then the second child, who was different, he was diagnosed at six and my daughter was diagnosed at three, but only with great perseverance.

Sharon daVanport: And what do you mean by that? What’s great perseverance with your daughter? Was there more mild [unknown]?

Kristi Sakai: Well, there were two things in our disfavor at the time. One was that there was this assumption that girls just don’t have Asperger’s. They don’t have autism at the prevalence as males, and just because their brothers had it did not mean that she had it, necessarily. But I was watching since she was an infant, saying: “She’s doing things, behaving in a way that her brothers did, some similar things.” And they said: “Oh, she’s just copying her brothers.” I’m like: “They don’t do those things anymore—sensory issues, being overwhelmed, having difficulty with transitions.”

So there was that, and the fact that she was so young. It was unusual at the time for…we briefly had her observed with other kids with autism. She was the star. She was very bright and—not that they weren’t—but she had a high IQ; she was able to memorize things; she sounded like a little encyclopedia. They didn’t see that as autism, and at two and then a three year old.

Sharon daVanport: I see.

Kristi Sakai: Challenging.

Sharon daVanport: Right. Were the differences that you say that you noticed in your boys as compared to your daughter, were those differences so subtle that for you to pick them up it’s one thing living with somebody, and then for others to see it? I thought it was interesting that you said when we were visiting earlier that when you guys had ABC Nightline come out and film you and your family and your daughter, specifically your daughter for an episode on girls on the spectrum, and you were mentioning that it was hard for them to pick up on the subtleties. How were you able to get around that for the professionals?

Kristi Sakai: Well, mostly with time. Again, when you live with someone and you’re aware of what the characteristics of autism spectrum disorder are and was well-versed, I could see those things in her. The challenge was that she is empathetic. The boys actually do have empathy; it’s just that it’s not as readily apparent. And she’s so eager to please. She would try so hard, but what we have seen over the years is that while she will really, really make much more of a visible effort to please particularly adults, it doesn’t bear out over time. She burns out very quickly, so time is the indicator sometimes with her and with other girls I’ve known. That they can hold it together and really work hard to please, and they can display empathy and she’s very emotional and so dramatic, and she’s shown a lot of emotion. It’s not until she just can’t hold it together anymore [that] they see the autism.

Sharon daVanport: Now, that’s very interesting, coming from a parent, Kristi, because you explaining that, it’s so true. I’ve said this about myself in an interview not long ago for a documentary. They were asking about certain things. I’m like: “I can make a really great first impression. People who don’t really know me deeply or they hear me on the radio show, they have no idea how many hours and hours and hours I put in to practicing just the introduction for one show.” And how exhausted—I could go take a three hour nap after a one hour radio show. [Chuckles] People just don’t realize. And I used to think that everybody was like that. When I found out that other people could just breeze through conversation or breeze through certain things, I thought: “You mean there are people on this planet that don’t have to do all this legwork and have to do all this stuff?”

It’s a different way of communicating, and I find that interesting that you say that, because I like that you expressed it as time being the indicator. That is so true. Over time when you get to know someone and you can see the subtle sensory challenges that can build up to what some might call meltdowns or some really sensory overload issues, it takes time to see some of those, even in boys. But I do see that with females, it’s a real common theme over on our forum that what you described is so typical. It really is.

I’d like to get to your book. For those who don’t know, Kristi was the recipient of an award through the Autism Society of America in 2006 for their Literary Work of the Year in the Family/Social category, and that award was for Kristi’s book, Finding Our Way: Creating a Supportive Home and Community for the Asperger Syndrome Family. I did read this book last year, Kristi. It’s a great book. So congratulations on that award that you received; I can definitely see why you did. I’d like for you to tell our listeners a little bit about the book, and why they should have it in their home.

Kristi Sakai: [Chuckles] Well, it came out five years ago, actually, and I’ve had a really good response from it. I didn’t write it from a autobiographical [perspective], even though a lot of the information came from our experiences as a family. And there are little vignettes that are hopefully humorous, for the most part. [Chuckles]

Sharon daVanport: They are. [Chuckles]

Kristi Sakai: But when I started this journey, I found very little available to me as a parent, so a decade ago, what I read were clinical and school support. I searched desperately to find something that would explain how I should set up my home to have it be most comfortable. A lot of it wa intuitive; a lot of it was reading the research about what worked in class and figuring out how that worked for my child in their home. Reading Difficult Moments about meltdowns. How does that work in our world as a family?

So I took research-based interventions and basically translated them for real life—for the rest of us, who are moms and dads and family members. So that was my premise for writing the book. I just wanted it to be in a language that I could understand and other people could, so I could take my child to the grocery store.

Sharon daVanport: Right.

Kristi Sakai: I could have a family event and know how to manage that. And with three, the benefit is, I have a lot of hours to figure it out. [Chuckles]

Sharon daVanport: A lot of experience. Right. And we here a lot of parents talk about the strengths and challenges and the whole gamut, when it comes to the spectrum. Being that you have such a diverse family: you have a husband who’s on the spectrum. And you’re neurotypical, is that correct? You’re not identified as being on the spectrum? You’re neurotypical?

Kristi Sakai: No, I’m not [on the spectrum]. I don’t know if my friends would say I’m neurotypical. [Laughter] I don’t know. I attract Aspies; I can go to a party and no one knows anything about me, they’ll gravitate towards me. [Laughter] So I think that…I don’t know. I’m some sort of Asperger counterpart.

Sharon daVanport: [Laughter] It’s like what Tony Attwood told me a couple weeks ago. He told me that Stephen Mark Shore made him an honorary member of the club. [Laughter] He’s an honorary Aspie. Because he just reslly gets them. Maybe that’s what you are. [Chuckles]

Kristi Sakai: Yeah. Well, my children, they don’t understand; they all have Asperger’s. They’re like: “We all have Asperger’s.” I’m like: “Well, not all of us.” [Chuckles]

Sharon daVanport: Right. You’re definitely outnumbered, then.

Kristi Sakai: I am.

Sharon daVanport: Something I find interesting: You said your oldest child is 18. I have a son who’s 17 who’s on the spectrum, and as I’ve seen him mture through the years, something I find interesting as a parent is that the things that they took so literally, they trade them in for a whole new set of literal language skills that they have to learn as they get older. [Laughter] High school’s been interesting for us.

Kristi Sakai: Yeah.

Sharon daVanport: It seemed like once they got through elementary and then the middle school years, which, oh, my goodness. I never want to go back to again with the children. It’s just been a nightmare. But now in high school, it’s like there’s a whole new set of things that you have work through with taking language literally and things like that. Do you find that with your children that has been something that you’ve had to make daily communication about? I do with my son—daily, it has to be.

Kristi Sakai: Oh, yes. That’s just one of the many components. We can talk about my new book in a minute. [Laughter]

Sharon daVanport: I definitely want to. Yeah.

Kristi Sakai: But one of the things that’s been interesting is that Tom, my 18 year old, has been so therapized—so much speech therapy, he knows all the lingo and he can recite all the rules.

Sharon daVanport: Uh-huh.

Kristi Sakai: And he knows what he’s supposed to do, and he knows what reciprocity is. So if he’s one-on-one with a speech therapist, he is just a star. But in real life, it’s very difficult for him to interpret. One of the things that’s interesting is that he’ll be like: “You’re using sarcasm.” [Laughter]

Sharon daVanport: Right. He knows. Very good.

Kristi Sakai: And he knows what it is, but he’ll respond in a very robotic tone.

Sharon daVanport: My son’s a lot like that; yeah.

Kristi Sakai: He’ll be like: “You’re using sarcasm; I can tell.” I’m like: “Good job, Tom.” [Laughter]

Sharon daVanport: That’s right. That’s right. One thing I try to do when I’m advocating for either my child or myself, I try to explain to people that just because we know what the rules are; just because we know what something is, doesn’t mean we may know how to do it or find those steps. You’ve got the executive functioning challenges that come up, too.

So I try to remind people that just because someone can recite the rules or they know the rules, or they know the directions, doesn’t mean that we can actually start, get to the middle and finish exactly. Just because you know it in your head doesn’t mean you can follow through sometimes. There is a method to the madness that we have to process. So I try to remind people of that. Do you find that with your children, that’s been a huge thing to have to advocate for, as well?

Kristi Sakai: Absolutely. From the very beginning, they’d be like: “But Tom is so smart!” I’m like: “Yes, he is. He is.” People thought he was a genius when he was a little one, and then it hasn’t completely bourne out because of all of his challenges.

Sharon daVanport: Uh-huh.

Kristi Sakai: Getting in the way of him being as successful in the way that the world wants, expects. Because he’s bright, but just to get through the day, for any of my kids, they have to just hold it together. Just really have to deal with all their sensory issues, the being overwhelmed with the social dynamics of school. We try not to have too strong of expectations. When they get out of school at the end of the day, where they may do well and then melt down the second they hit the door, because they’re exhausted.

Sharon daVanport: Yeah. Right. And before we get to your new book, I wanted to just say one last thing about your Finding Our Way book. The one thing I appreciate about that is that it is oftentimes so hard to feel like we can advocate for our family. Our whole family, we’re a family unit, and just to hear some of the different stories and the humor that you use in that, I truly do recommend that other people go out and get this book. Just because you wrote it five years ago, believe me, it’s still very applicable in every way. I appreciated the humor in it.

Kristi Sakai: Thanks.

Sharon daVanport: You’re a very funny person. [Chuckles]

Kristi Sakai: Thank you. I still use those strategies. I still use all of those strategies. I primed my kids this morning, exactly: “You can’t call from school between 8:00 and 9:00.” [Unknown] I’m like: “Ugh.”

Sharon daVanport: Uh-huh. Right.

Kristi Sakai: [Unknown] timing. Predicting or knowing that they might call.

Sharon daVanport: That’s right. I’ve been still doing that all the time. Now that we’ve switched the time for our radio show, I’m not quite sure I won’t get a million beeps during this hour. But oh, well. We’ll see. [Chuckles]

Kristi Sakai: Yeah. Daylight Savings Time is just cruel for people with Asperger’s.

Sharon daVanport: [Sighs]

Kristi Sakai: Honestly, it’s just [unknown] challenging for the kids for years.

Sharon daVanport: Right; right. I understand that. Now we get to talk about your new book. I am so excited about this. When you first joined the AWN website, our forum, and you came over and you posted and you were doing some research and getting some people involved in the conversation over at the Autism Women’s Network, I was just so excited. So many people, the buzz around the forum was: “Oh, my gosh! Can’t wait till this book comes out!” So why don’t y’all tell everybody what you and…you have a co-author, as well, right? You guys are working on a book together? Is this true, or—?

Kristi Sakai: Yeah. He’s a counselor—Joe Steiner—and he works with children and families and individuals, and a lot of individuals with Asperger’s. They just keep coming to him. [Chuckles]

Sharon daVanport: Okay.

Kristi Sakai: He’s been working long hours taking care of family. So we’re writing a book; it’s nearly finished. It’s kind of in that point where it’s all in my court now. The working title right now is: I Don’t Want to Talk About It: Asperger’s, Adolescence and Sexuality and it’s for parents, talking about what the challenges for an individual with Asperger’s around sexuality are, so the characteristics that make that challenging. And what we need to teach them and why we need to teach these things through direct instruction and very clear explanations, and using research-based teaching methods, as opposed to just having “the talk.”

Sharon daVanport: Oh, okay.

Kristi Sakai: And kids are often resistant, as well. So [unknown].

Sharon daVanport: Right. Wow. Is it going to be basically…You said it’s for parents, so is the book basically going to cover that adolescent stage when going through puberty and identifying their sexuality? Is that basically what it’s going to be about, and how parents can be a part of that in reaching out to their child, in a way that they can actually open up a conversation, even if the child’s resistant? Is that what you mean?

Kristi Sakai: Absolutely. Because what we find is that we as parents sometimes don’t think of our kids as…first of all, we don’t want to think of them as sexual beings. They’re our babies; we don’t like to think about that. A lot of our kids on the spectrum, there are a lot of them that don’t seem to have interest, and our take on it is: Everyone has a right to have relationships and sexual feelings and develop sexual relationships over the course of their lifetime. That’s very important. And how does that work for a person? And everyone on the spectrum is different, so how does that work for your individual child? How can we help them learn? How can we help them build those healthy relationships?

Sharon daVanport: Okay.

Kristi Sakai: And we see so many kids and young adults who’ve gotten into trouble; they’ve crossed the line somewhere; they’ve stalked; they’ve offended; they’ve done something sexually inappropriate, because they just did not know the rules.

Sharon daVanport: Right.

Kristi Sakai: They didn’t know; no one explained it.

Sharon daVanport: And I’ve found that even if they know right from wrong, if you were to ask a friend of mine who maybe has a child on the spectrum or even my own child. I’m not saying that my child has done this, but as a hypothetical situation, you can ask a teenager: “Is stalking wrong?” “Oh, yes, stalking’s wrong.” But then you can turn right back around and see that they might be displaying some stalkish behaviors. And not even intending or knowing that what they’re doing, that their insistence, that maybe their focus—some people call it “obsession”—but their special interest could become a person, maybe someone that they really have a crush on.

And because that hyperability that we seem to be able to have that is the unique quality of being able to focus on something, being on the spectrum, which serves us well in many ways, also, too, I’ve found, being a parent to a young child on the spectrum, you have to really watch that. You have to be able to step up and be able to tell your child: “Listen, what you’re doing could be considered stalking.” Just literally, you have to explain this to them. Even if you were to ask them: Is stalking right or wrong? They’ll say: “Oh, it’s wrong.” But then watch them turn right back around and they might do some of those behaviors.

Kristi Sakai: Yes.

Sharon daVanport: Because it shows truly that they really aren’t meaning to do it. They need to understand.

Kristi Sakai: Absolutely.

Sharon daVanport: Can you explain, without giving your…We wouldn’t have time anyway for you to give your whole book away. But can you just maybe give our listeners an idea of maybe a couple strategies that you are putting in the book for parents in talking to their teen?

Kristi Sakai: What we’re trying to do is, because there’s very little actual research on autism and sexuality. There’s some, and there’s more coming, I’m sure and we’re calling for more. What we’re doing is taking the strategies we know for teaching—there’s research behind what works best for these kids—and there is a wealth of information on sexuality education. And so we’re trying to combine those two areas.

So some of the things that we’re talking about…We’ve actually had to do direct instruction for teaching…First of all, we teach the rules about masturbation. That is one of the things we get the most calls and interest about, and e-mails about their kids getting in trouble about being in the wrong place and around the wrong person, or whatever. Getting in trouble.

But also, one of the things that we really feel strongly is about teaching the correct way to channel your sexual energy. We’ve actually had to do some direct instruction to explain how to masturbate to some of these kiddos. They don’t know; they’ve hurt themselves. They don’t know how; they don’t know that they should, and they have that sexual energy. We all have that. Or, I wouldn’t say “we all.” Some people don’t appear to be as interested. But we want to have very frank conversations with our kiddos, and we want to use visual aids sometimes. We’ve actually had to use some tools and explain, just like in sex ed classes, which, strangely, a lot of our kids somehow miss in special ed, how to use condoms and how to be safe and when is it appropriate and where is it appropriate. So we have all these very clear rules about [unknown].

Sharon daVanport: Right. I think this is awesome, Kristi, because, like you said, a lot of people might feel uncomfortable to talk to their child about this. But I think it’s absolutely necessary to talk to any child about it, whether they’re on the spectrum or not. But being on the spectrum myself, and knowing how I process language, and knowing that I do sometimes have to take the extra mile and even ask questions to exactly know what someone means, we’d really need to be taking that seriously when we have children on the spectrum. We need to be having those conversations, and I am just so much looking forward to this book. Do you have any idea when it might be completed? Are you guys still doing some research, writing? What stage are you guys at for this?

Kristi Sakai: Well, I’ve been doing research the last four years.

Sharon daVanport: Okay.

Kristi Sakai: Talking to as many people, I had a survey going for a while. I’ve been reading on the forum anything that I see on your forum, and I will definitely reference you. As I’ve gone around the country and talked with people and read, it’s hard to stop researching, because I keep coming up with new ideas. [Laughter] But I’m hoping to be finished by the end of the year with everything, and I don’t know how [unknown] the publisher after that, but certainly I’m hoping by ASA national conference in July.

Sharon daVanport: In July, in Florida. Right. Oh, neat.

Kristi Sakai: So that’s what we’re shooting for.

Sharon daVanport: Okay.

Kristi Sakai: Meanwhile, we’ll be at OCALI, the Ohio Center for Autism and Low-Incidence conference there, talking about our book and presenting. And that’s next week, actually, in Columbus, Ohio.

Sharon daVanport: Oh, okay. All right.

Kristi Sakai: So if [unkown] there, come say hi.

Sharon daVanport: Okay. Well, I have some friends who are big supporters of the AWN who live near Columbus, right outside of Columbus. I’ll have to let her know that you’re going to be there. Very nice. And that’s next week?

Kristi Sakai: Yes. We’re speaking the 17 and the 18 in the afternoon at the Convention Center, for the conference.

Sharon daVanport: What is the name of the talk?

Kristi Sakai: I think it’s: “Let’s Talk About S-E-X.”

Sharon daVanport: Okay.

Kristi Sakai: That pops in my head. [Laughter]

Sharon daVanport: That’s really good, Kristi. I think it’s awesome, yeah.

Kristi Sakai: [Unknown] if I’m presenting, but yeah. We’re literally going to show some of the instruction methods, and when we explain about why we need to talk about these things, one of the biggest things is getting over the discomfort about talking about sex.

Sharon daVanport: Right.

Kristi Sakai: So the first chapter of the book is really how to get over those feelings and why you might be having them. Before you actually have the conversation with your kid, you’ve got to figure that out on your own and just dive in.

Sharon daVanport: Well, I found that out really quick, because when I first had that conversation with a child of mine, I didn’t expect their response to be…by the time I build myself up to do it, I didn’t expect their response to be like: “I’m not having this conversation with you, Mom.” [Chuckles] So then I had to sit back and process: “Okay, well, you know what? I’m going to think about what you just said and we’ll be back to talk about this later.” And I shouldn’t have even ended with that, because they’re like: “Oh, no, we won’t.” [Chuckles] And I’m like: “Okay.”

Kristi Sakai: Yeah. [unknown]

Sharon daVanport: [Chuckles] That’s what we need as parents. I have adult children now and I’m a grandmother now, so it’s different. I feel like I do better with my teenagers now. I’m a little bit more prepared. But when you’re first going through this and flying by the seat of your pants, it’s going to be great when you have this book coming out and you can present this book in a way of either talks or workshops. This is going to be awesome, Kristi, because this is such a need. Like you said, we see so many times or hear stories of our youngsters or even people who are adults that have gotten themselves into some trouble because they did not realize. They knew the rules, but they did not realize how it really, truly applied to them somewhere along the way.

Kristi Sakai: Yeah.

Sharon daVanport: It’s just very sad to see it happen.

Kristi Sakai: It is. It’s heartbreaking when I get these phone calls and e-mails, or a family’s come up to me at a workshop and they describe a situation where their child is now listed as a sex offender for something, in most cases—not all—but in most cases, something that was just a social error.

Sharon daVanport: Right.

Kristi Sakai: And how heartbreaking that is, and I just…We want to prevent that from happening. We want to protect our kids and help them grow up healthy and safe. That’s the other issue: that a lot of folks on the spectrum are victims of sexual abuse or sexual assault. And because they don’t know the rules, they don’t know how to protect themselves; they don’t have as much peer protection; they may not know what’s happening when they’re younger. So that’s the other component to having a healthy sense of sexuality. Your sexuality, you know it. It’s yours, and you can express it in a safe way.

Sharon daVanport: Right.

Kristi Sakai: And you can be [safe?] and not exploited. So that’s important as well.

Sharon daVanport: Well, I’m going to look forward to hearing this advice through this book, to know how to help families understand how to get over that uncomfortableness. Like you said, that’s really the first hurdle, isn’t it?

Kristi Sakai: Yeah. And the second is the kid, who says: “I don’t want to have this [unknown]!”

Sharon daVanport: [Laughter] Yeah, you finally get yourself through it, and they’re like…That’s exactly what my first child did: “No, we’re not having this conversation, Mom.” [Laughter] “I’m sorry that you think we are, but we’re not.”

Kristi Sakai: And we speculate a lot about why that is. Some of the kids, we’ve noticed, just like when they are approached with something that they can’t master easily or that they don’t quite understand, is that often our kids don’t even want to approach something that they can’t be successful in. Maybe they sense this is something that they’re going to have difficulty with, or they know they are. It involves social issues and emotions, where are often challenging, and some people just are like: “That’s too hard. I’m not even going to go there.”

Sharon daVanport: Right.

Kristi Sakai: “I’m not even going to put through with that effort if it’s going to take me two whole months to work up to talking to a girl, I don’t want to start.”

Sharon daVanport: Right.

Kristi Sakai: So my [unknown] with some clients is they’re like: “Well, I can’t just go home and tell ‘em to have sex?” “No, we’ve got to lay the foundation.

Sharon daVanport: That’s right.

Kristi Sakai: [Unknown] “I’m not going to even bother; I’d rather be alone.”

Sharon daVanport: Right. I’ve heard my son say that before. Not that exact situation, but when he finds out something might take a lot of effort and a lot towards it, he’s just so exhausted, and I’m like: “Well, bless his heart.” Okay, the exhaustion that he just anticipates coming from something. But these are things that I really feel, in order to be a responsible parent, we really don’t have a choice, Kristi. We have to teach our children how to be sexual beings in a healthy, legal way. Because they have to abide by the law, just like we all do. So it’s so important to have to address that for our children.

Kristi Sakai: And one of the ways that you can have conversations with our kiddos on the spectrum is priming them for those discussions, saying: “We’re going to be talking about, over a period of time, thinking about what might be difficult for them, for your child, specifically.” Do they have a lot of difficulties? Some kids can just have conversations over time. Other kids need visual aids.

Sharon daVanport: Umhm.

Kristi Sakai: Other kids need to have more than one person. Some kids need to have just one person to really interact with and discuss these things with. Rewarding them for having the conversation, even. For sitting down, because this is harder than schoolwork. My kids would rather do math than have these conversations. They’re like: “She’s at it again!”

Sharon daVanport: [Laughter]

Kristi Sakai: So knowing that they have that preparation, that they’re going to have those conversations and when, how long. My son wants to know how long these things are going to last. “How long is this going to last?”

Sharon daVanport: Right.

Kristi Sakai: “How long do I have to sit here and listen to this and I can get back to video games?” So, yeah. Just offering incentive to make it worthwhile, that stuff sinks in. They’re being rewarded, and maybe especially [Chuckles] they’re being rewarded to have the conversation.

Sharon daVanport: Right. Now, are you offering these talks in a workhsop kind of atmosphere? Are they breakway sessions at conferences? How are you offering these talks?

Kristi Sakai: Presenting is what I love to do. I love to go talk to others. I do it for parents and professionals. Even though the book is geared towards parents, it is a community effort to educate our kids and to have those conversations. So I’ve done breakout sessions; we’re putting together a full day workshop on sexuality that will cover many different aspects, from early preadolescence through adulthood, talking about…some of the stuff are legal issues, some of the stuff are family issues, some of them are school issues. So, yes, absolutely.

Sharon daVanport: Okay.

Kristi Sakai: One of the great things about presenting is that I can zip on a plane for a short time and come right back to my family and I enjoy that very much.

Sharon daVanport: So, Kristi, how can people get a hold of you? What is the best way for someone to get a hold of you to present?

Kristi Sakai: E-mail is the best way. My e-mail address is kristisakai AT hotmail.com

Sharon daVanport: Okay.

Kristi Sakai: If anybody has questions that they would like to ask via e-mail, or post them to the forum and I’m sure Sharon will let me know that something’s come up there.

Sharon daVanport: I will.

Kristi Sakai: Or if you want to contact me privately, you can do that through my e-mail. And if anybody wants to offer any stories they’d like to share, they think are important for me to know as an educator, as a counselor, I’d really appreciate that as well.

Sharon daVanport: What are some of the topics that you’re still looking to hear from people on? Maybe we could break this down for some of our listeners, and they might say: “Oh, wow. I have a story like that!” Is there anything in particular you’re still looking for, maybe?

Kristi Sakai: Well, as much research that I have done, and as many people as I’ve talked to, I keep hearing that people need more information about gay, lesbian, transgender issues in individuals with autism. I have to be honest: I’m no expert whatsoever. I am still learning and growing in that capacity to understand that perspective, and how we can help parents understand their kids who are going through these challenges; how we can support individuals on the spectrum who are struggling with additional challenges in the society that we live in.

Sharon daVanport: Monday the 29, November the 29—isn’t that your birthday, the 28 or 29? Something like that? I remember seeing your birthday somewhere. I’m sorry; I’m obsessed with dates. I’m sorry. That was a weird thing to say. [Laughter] We’re having a conversation on a radio station. Why in the world would I even bring that up? But I was just going to say, back on topic, that Monday the 29, our show that day is actually going to be about lesbian, gay and trans issues in the autism community.

Kristi Sakai: How wonderful.

Sharon daVanport: That’s what our Blogtalk radio show’s going to be about on the 29. I actually have a meeting this week to go over with one of our guests on a lot of things. Because like you, Kristi, I am not well-versed, well-educated, I should say, in that and I just want to make for sure that as we’re putting this show together, we do it right. It is an important topic that needs to be addressed, so I’m just so excited that we were able to do this and we were able to get it scheduled for this month.

Kristi Sakai: That is wonderful, because literally, I am getting just more and more calls about this issue and we want to be respectful and compassionate and help families to understand their kids. We want to support them.

Sharon daVanport: Right.

Kristi Sakai: So I’m so grateful that you are putting a show together like this, and I’ll be sure to listen. [Unknown]

Sharon daVanport: [Laughter] I’m just really happy you were able to join us today, too, and I wanted to give you an opportunity like we do with all our guests before we close out: If there’s anything that we didn’t touch on, or anything you’d like to share with our listeners in closing, what would that be?

Kristi Sakai: Well, I’d just like to say that in regards to sexuality, it’s not one talk. It’s not one conversation. It’s really a mindset of incorporating sexuality education into your lives over as you raise your child, and helping you be comfortable and healthy, and helping your child be comfortable and healthy and safe. So I hope you’ll pick up our book when it’s out and feel free to contact me if you would like to ask any questions or share information, and I appreciate you having me on the show. And, are you still in the top 10 for the Pepsi Refresh challenge?

Sharon daVanport: [Laughter] We are. Thank you for bringing that up. I was going to end the show doing that today, but since you brought it up, we are in the top ten. I believe we are either nine or ten; let me look here. Looks like we’re still ranked number nine.

Kristi Sakai: Yay!

Sharon daVanport: So I’m very excited that we’re in the top 10. That means if we stay in the top 10, Kristi, we actually will get the grant and we can host these workshops. I’m so excited.

Kristi Sakai: That’s wonderful. Thank you for your hard work. And Sharon, I just want to say, thank you so much to the Autism Women’s Network. You’re doing amazing things, and I’m so grateful that I can send people to you as a resource.

Sharon daVanport: Well, thank you. Well, thank you very much, too, Kristi, all right? You have a wonderful day. Thank you for being our guest today.

Kristi Sakai: You, too. Take care, and bye-bye.

Sharon daVanport: Okay, bye-bye.

[Kristi hangs up].

Sharon daVanport: Okay, everyone. That is going to do it for us today on Autism Women’s Network radio on Blogtalk. As Kristi and I were mentioning just a moment ago, we want to invite everyone to keep voting for us in the Pepsi Refresh contest. We’re so excited that AWN has managed to stay in the top 10 this month. We’re so excited. We want to thank all of you, our supporters and voters for continuing to stick by us. All of you who’ve been requesting that we send you daily e-mail reminders to vote, just hop on over to the website to vote. And you also can vote via text, and you just send your text to “Pepsi” at 73774, and you text the numbers 101500. And that’s going to do it for us today. Thank you all so much, and we’ll be back here next week with Professor Simon Barron-Cohen as our guest. Goodbye.

[End]

[Music]

Sharon daVanport: Good day, and welcome to AWN radio. We are the Autism Women’s Network on Blogtalk. I am your host, Sharon daVanport, and today is Tuesday, November 2, 2010. Thank you for joining us for this special broadcast with Dr. Tony Attwood. We’re pleased that he could stop by and visit us here on the show before he heads back home to Australia, I guess it’s going to be this Friday.

A quick note before we do get started with the show: I just wanted to mention to our listeners that our radio sponsor, LifePROTEKT is continuing to provide a lucky listener with a GPS locator and one year of service through a prize drawing that we have monthly here on AWN radio. So if you have a child or your know someone whose child can benefit from this device due to wandering, you only need to submit your story to us, nd that would be at our info AT autismwomensnetwork DOT org e-mail and we will enter you in for the contest.

Well, as you guys may have noticed, I didn’t bring on co-host Tricia Kenney. She, as our regular listeners are aware, was very fortunate to get her twin sons who are on the spectrum into a really, really good school, so she’s actually on the road moving. She’s finally moving this week, and she’ll be back joining us again next week for our regular show. But today I’m flying solo, so I’m not going to be having the chat room up, because I’m not going to be able to multitask that without Tricia here. So we’re just going to have our listeners in through the switchboard and on the Internet.

With that said, then, I’d like to welcome our special guest for the hour, author, psychologist and public speaker, Dr. Tony Attwood. Good afternoon, Dr. Attwood.

Dr. Tony Attwood: Hello, Sharon.

Sharon daVanport: Hello. Thank you for joining us today, and stopping by before you head back to Australia.

Dr. Tony Attwood: Thank you, yes. I’m feeling somewhat exhausted, but I’m looking forward to our conversation here that’ll be transmitted and recorded.

Sharon daVanport: Wow, very good. Thank you, again, for joining us. There’s something that I told you before the show started that I really wanted us to touch base on, and maybe we could start there, since we’re going to be talking about female-specific Asperger’s and autism. A question that is posed to us at the AWN not to often but on occasion is: “Why is it important to pay attention to qualities specific to autistic females?

Dr. Tony Attwood: Oh, good question! Really because the girls and women are often not picked up, and tend to suffer in silence. If they were identified, then they may be able to get help—not only necessarily in terms of school supe’sport or whatever, but also, more importantly, understanding from parents, teachers. It may well be from employers, friends, etc.

But it’s also to understand yourself and why you’re different but not defective, because otherwise your view can be: “There’s something inherently wrong with me,” and the person may need to know that: “No, you’re just different and there’s a word that describes it.” It doesn’t mean to say once you’ve had the diagnosis, you’re a different person. You just know why you’re different.

Sharon daVanport: Right. And that makes so much sense. I remember reading somewhere before that you had actually made mention that you believe, along with several other experts in the field of Asperger’s, that the more that we understand about the differences in how to pick up on female-specific Asperger’s, the greater understanding we’ll have of the spectrum as a whole.

Dr. Tony Attwood: Yes, indeed. And also how some of the girls have worked out strategies to learn social understanding and to cope with neurotypicals that we could say: “Okay, well, the boys could benefit from this, and we’ll pass it over to the boys.”

Sharon daVanport: Right. Why do you think that is, Dr. Attwood? I know that’s a blanket, open-ended question, but you could probably break this down better than I could break it down in a question. But just throwing it out there: why is it that we see so many differences…not just because a man is a man and a woman’s a woman. That’s obvious. But if we could talk about maybe some of those differences and then break it down about why, for instance, it’s not recognized in women.

Dr. Tony Attwood: I think one of the things is that the girls and the women seem to have a more constructive way of coping with their social confusion and difference. The boys tend to be abrasive, obnoxious and [chuckles] annoying [unknown] on. Whereas the girls say: “I’ve got to do something about this. I’ve got to either observe others and absorb their persona and copy them, or I will camouflage my social confusion by hiding in a group, letting others go and doing other things.” So what can happen is that the girls will have their way of hiding, camouflaging, imitating others, which means that they’re often not picked up. But what people don’t realize is the degree of exhaustion from that approach.

Sharon daVanport: Mm. That’s very true. Very, very true, the exhaustion. I used to think until I was diagnosed a few years ago, I used to think that everybody just by carrying on a conversation got exhausted. [Chuckles] When I found out that not everybody gets exhausted from a conversation or to go and make a public appearance, when I found that out I was shocked.

Dr. Tony Attwood: Yes. What you described is a contrast, because for the majority of neurotypical women, they are infused and energized by social chit-chat. They seek it out; they enjoy it. And the trouble is that the women with Asperger’s are then expected to be the same. And when they’re not and decline things, or leave earlier, they say: “Well, what’s wrong with her?”

Sharon daVanport: Right. And that’s true, and then we start feeling that isolation. We pick it up. Maybe it’s not said to us, and then maybe we try harder the next time to blend a little bit longer at a social event. But I like the way you give a lot of really good pointers about different things we can do when we find ourselves in those situations to advocate for ourselves, to say: “Listen, I need five minutes or ten minutes,” and back away.

Dr. Tony Attwood: Yeah. What I’d encourage the women and the girls to do is to have more confidence in describing their personality. Not necessarily using a diagnostic term, but just say: “I’m the sort of person who often prefers to read a book than social chit-chat. I’m the sort of person who is not interested in disclosing about my family and showing pictures of my children and my partner.” And just say that: “I’m the sort of person who keeps to myself, is quiet,” and using the terms like “introvert” and “personality” rather than necessarily broadcasting the name of the syndrome.

Sharon daVanport: Right. And now that we’re on this topic, if we could maybe elaborate on some of the challenges that you see clinically for…say an adult woman comes in, and you discover that she is on the spectrum. We want to encourage people to know how serious this is, that we’re trying to get earlier diagnostic tools for females and be able to have them identified so that they have those supports in place. What are some of the things that you see that women come in and present with by the time that they’re adults that is so blatantly obvious to you as a clinician that, yes, they’re on the spectrum?

Dr. Tony Attwood: I think what kind of happened is if they’ve been seeking help, there may have been a history of inappropriate diagnoses or almost-right diagnoses. There can be a history of the possibility of anorexia nervosa or borderline personality disorder, and so people have approached the person because of that sort of interpretation of what the person is doing. But from my clinical experience, often the person has the characteristics of Asperger’s Syndrome, but what may be more pressing is actually is anxiety and depression.

Sharon daVanport: Okay.

Dr. Tony Attwood: That anxiety can be a constitutional feature of Asperger’s Syndrome, but it means that the strategies to treat anxiety in someone with Asperger’s Syndrome need to be modified for the profile and experiences and challenges and stresses of someone with Asperger’s Syndrome. But also, the exhaustion, low self-esteem. I would also say that empathic attunement that women with Asperger’s Syndrome can have means that they may feel quite depressed.

Sharon daVanport: And when you see someone presenting with those different things, what are some of the responses or reactions that you might get? I know that when I was first approached and told that it might be good for me to have an assessment, my son had been seeing a psychologist in a clinic that I was taking him to. For several years he was going there, and I was shocked, because I compared everything about myself to how my son presented, and I laughed, Dr. Attwood.

Dr. Tony Attwood: [Laughter]

Sharon daVanport: I was like: “Are you kidding? I don’t have Asperger’s!” And then, of course, years later it’s just so obvious, and I’ve learned to accept who I am and I’m fine with it. But it was just…I laughed. But also, too, I was relieved. Once I read about it and it all made sense and fell into place, it was very relieving and like a huge burden had just been lifted off my shoulders because I finally understood myself. Everything made sense. Do you tend to get those responses from females?

Dr. Tony Attwood: Yeah. I think people in general, their main experience of what we call autism spectrum disorders is in the severer range, with high support needs or various challenges. And the person says: “But I’m not in that range.” And yes, that to a certain extent is true, but the way I describe what we call the autism spectrum or continuum is like the continuum of visual impairment. There are people who are “blind” who are severely autistic; there are those who need glasses. They can read the headlines, but not the fine print, and it’s like saying to someone who needs glasses to read: “You’re blind.” “No, I’m not blind. I can see.” No. What it means is you’ve got visual impairment. You need glasses or help to see some aspects of the social world that are out of focus for you.

Sharon daVanport: I see. That is true.

Dr. Tony Attwood: And you just used the term: “I see.”

Sharon daVanport: [Chuckles] Right. And actually, I was just…yeah, okay. I get that. So why is it other than the obvious…what are some of the more subtle reasons why females will typically fly under the radar? You said in the very beginning that: “Well, if a boy behaves some way, it might be more blatantly obvious to parents or educators.” What are some of the more subtle things that you’re seeing as a clinician that’s really important for people to observe and understand what’s going on?

Dr. Tony Attwood: The girls aren’t stupid. [Chuckles] If somebody says: “Have you got any friends?” of course they’re going to say: “Yeah, I’ve got lots of friends.” But the question is then: Would the other people call them acquaintances rather than friends?

Sharon daVanport: Oh, okay.

Dr. Tony Attwood: And the girl may know the game of diagnosis easier, to give a false trail, which can lead clinicians to false impressions. Or people may talk about interests, and yes, she’s interested in Barbie dolls and [horses?] and so on. But it’s the intensity of the interest that may be unusual, rather than the focus itself. So in a clinical sense, we’ve also got to look at how the person has coped with their social confusion.

Girls will often in a social setting not let on that they’re actually confused. So when you ask them: “Do you know what to do?” they’ll say: “Yes, yes! I do; I do.” But in the eyes, there is terror that the person won’t let on, or appease other people. So the girls seem to have an ability to sometimes fake it ’til they make it, and to really cope in a social situation with a degree of exhaustion and success. It’s like I call Cinderella at the ball, and they’re really successful socially for a certain length of time. Then the wheels fall off and they can’t do it anymore.

Sharon daVanport: Right. I had someone ask me the other day, Dr. Attwood, and I didn’t quite know how to answer her, so I’m going to ask you this question that she asked me. She’s self-identified at this point. There are a couple family members who when they found out about Asperger’s [feel] that that really does fit her. But she’s felt this way for a couple of years, but she’s been hesitant to go in and seek a formal diagnosis. She’s not quite sure if she wants to. But she did have another family member approach her, and she was asking me about this. They said to her: “Do you think because you’ve read about Asperger’s that you think that you can identify and have it?”

I tried to explain to her: In my mind, when I’m thinking of Asperger’s when it was told to me, you were saying how people usually go the opposite way and they fake it until they make it. They’re trying to fake and blend in. It’s usually just the opposite. So what I told my friend in this situation, Dr. Attwood, is that it’s going to be difficult for a lot of people and families to understand sometimes differences. How do you as a clinician help encourage people when they get a diagnosis to help their family understand that?

Dr. Tony Attwood: Okay, I think there are two issues here. One is quite often, the women that I see for a diagnostic assessment have read up on Asperger’s Syndrome. They wouldn’t be there unless they felt it fits them. So in a way, the initial part can be almost a self-diagnosis. That that person says: “I identified with all those sort of features,” etc.

Now, the thing is, if that person has been reasonably good at camouflaging it, other people—friends and family—may say: “No, no, you haven’t” because they’ve done so well, and their concept of autism spectrum disorders is the classic autistic child. And so some family members may say: “Ah, this does explain you. I now understand,” where others will reject that and say: “No, no, no, no. You can’t have that.” So it’s one of those things that when you explain the characteristics to family members, they can go either way—either acceptance and say: “Yep. that explains you,” or rejection. And it’s difficult to predict which way people will go.

Sharon daVanport: Right. What do you see more of, in your experience?

Dr. Tony Attwood: I think those who know the person really well and have got close to that person say: “Yes, that’s true.”

Sharon daVanport: Right. I’ve seen that in my experience with other females on the spectrum, and their stories seem to actually fit that quite well. People who know them fairly well will be like: “Oh, okay. Yeah, that makes sense.” What about when you’re dealing with parents and a diagnosis? There’s some chatter going on over at our forum a lot about parents wanting to know: What is the right age or the right time or should they tell their child that their child has Asperger’s? There’s a big, huge discussion going on, where some parents absolutely do not even want to tell the child. Clinically, what do you advise?

Dr. Tony Attwood: Okay. My preference is that when the child starts to know they’re different, they need to know. That’s assuming that the diagnosis has been made earlier on. So if it has, when that child feels or says: “I’m not like the other children. I don’t fit in; I’m feeling very upset about it,” then may be a time to explain the diagnosis. My concern is explaining the diagnosis to teenagers, because they are at that stage so emotionally fragile and unsure of their concept of self, they’re quite likely to completely reject the diagnosis and any information or support from that diagnosis. So I’m usually cautious with teenagers, because it can lead to an alienation and rejection of the suggestion.

Sharon daVanport: Oh, okay.

Dr. Tony Attwood: When the person is, say, graduating from high school and needs help in career or relationships or emotions, that may when they’ve got a greater degree of maturity be a time that the diagnosis could be explained. Now, it doesn’t mean not to explain it to teenagers, but if you are, it’s got to be explained very carefully. And I prefer it if it’s explained by a professional, not the parents. So if there’s an antagonism towards the diagnosis, it’s towards the professional, not the parents.

Sharon daVanport: Okay. So it helps the parents be able to stay empowered as a parent in helping that child, and not be the one that the child is trying to reject, so to speak.

Dr. Tony Attwood: The parents remain neutral about the diagnosis until they know the child’s reaction.

Sharon daVanport: I see. Okay, that makes sense. Now, you mentioned about if a child is a teenager, that’s when it really handled pretty strategically. What if a child gets an early diagnosis and maybe a parent is thinking about telling a child in grade school, before they’re actually a teen? What do you think about that?

Dr. Tony Attwood: I think if you explain to the child from the age of about six to pre-puberty, I think go for it. I think it could be very helpful. You’ve obviously got to explain it in a positive way. I go through the qualities and difficulties: “This explains why you’re different. This explains why you sing in perfect pitch, why you draw in photographic realism, why you’ve got those particular qualities, but also difficulties making friends.” So at an earlier age, there’s a greater ability to accept difference in a positive way. But for the teenagers, they can be so desperate to be part of a group and know that teenagers are so critical of anyone who’s different, the kid is saying: “If people know I’m different, it’s going to be a reason for rejection of me from my peer group.”

Sharon daVanport: I see. Now, can you give us a few examples or even just one of a conversation that a parent could have with a child in that situation? They know they’re different if it’s before they’ve hit puberty and the parent has decided: “I’m going to sit my child down and I’m going to tell them why they’re different or why they’re feeling that way.” Could you give an example of a conversation that would be good?

Dr. Tony Attwood: Okay. I think what you do is you go through with the child what their qualities are. The many kids with Asperger’s, they view their qualities in terms of their knowledge or the things that they do. I would then add to that list by parents giving information on their personality, their kindness or those sorts of things, and also go through not only their qualities, but some of their difficulties in things like social confusion, sometimes getting very anxious, may or may not be good at mathematics or things like that. And then say that: “There is a pattern in your characteristics of abilities and personality that actually has a name.” And then I introduce that concept that that name is Asperger’s Syndrome, but it explains why you have particular qualities, in terms of your artwork, in terms of your ability with animals, for example, your imagination.

Sharon daVanport: Right.

Dr. Tony Attwood: And be grateful for the Asperger characteristics. They can actually give you those qualities, but at the cost of some of the difficulties. But we’re working on the difficulties and we’re trying to enhance your qualities.

Sharon daVanport: Okay. The talk that you’re going to be giving there in Toronto, I noticed, has a lot to do with anxiety, and dealing with anxiety with your Asperger’s. Can you talk to us a little bit about that?

Dr. Tony Attwood: Oh, yeah. It [just seems?] that those with Asperger’s Syndrome are very good at worrying. [Chuckles] They’re natural worriers. And that can make you a bit pessimistic because you’re worried about what could go wrong. And anybody who is anxious tries to cope with it, and the ways people in general try to cope with it is to become controlling in your life. That is, to avoid certain situations where you may become anxious, frightened, [unknown] or etc.

But you also have routines and rituals to calm you down, and if someone takes those away, how are you going to cope? And the interest is not only a source of enjoyment intellectually. What the interest does is act as a thought blocker to keep away anxious, negative thoughts. So when someone’s anxious, the emotion of anxiety isn’t a bad emotion. It’s a survival emotion for fear of animals eating you, for example, but it’s how you cope with it and the intensity that can be the problem for the person with Asperger’s Syndrome.

So what I’ve got to do clinically is find out what strategies the person is using that may be better replaced by other ones, and really enhancing their range of strategies. Girls can sometimes be what we call passive-aggressive, using oppositional methods to control their environment—not go to school, stay in their bedroom, etc. So we’ve got to look at: Why is that person engaged in that behavior? Often, it’s a mechanism of coping with anxiety, uncertainty, failure and fear, and not only helping them cope with those situations, but boosting their self-confidence in those situations.

Sharon daVanport: Okay. And when you talk about the anxiety and how it can elevate and escalate at different times, and then you’ll see the different behaviors coming out, do you find it’s because people with Asperger’s, we tend to have just a great ability to focus. Some people call it “obsessions.” It doesn’t bother me either way if somebody calls something of mine that I’m super focused on, if it’s an obsession or a special interest. It’s neither here nor there to me; it doesn’t bother me. But do you think it’s because of that propensity that we have towards that?

Dr. Tony Attwood: Yes. I think what it is, it’s a tendency to focus on detail, but it’s often focusing on errors. One of my hobbies is [gardening,] and the trouble is that when I’m gardening, I tend to see the weeds, not the flowers. And other people say: “What a lovely garden!” and I’ve noticed a weed that I need to pull out. [Chuckles]

Sharon daVanport: Okay. [Chuckles]

Dr. Tony Attwood: So the trouble is, in that great attention to detail and tendency for perfectionism, there can be an overfocus on errors which distorts your thinking and perception of things.

Sharon daVanport: Right. Do you find with females, I hear this a lot over at our forum, Dr. Attwood, so I wanted to get your take on this for something that we see on a regular basis at discussions going on. And that has to do with what we were talking about a little bit earlier, about women being able to mask certain different things, and being able to blend into certain situations. But at the same time, because our challenges or whatever we might be dealing with at the moment is invisible to what others see, it’s [still] affecting us.

So sometimes it can be a curse, and I don’t mean that in a negative way. Some people would think: “Oh, you’re saying that people are cursed who are on the spectrum.” I’m not meaning that at all. But I’m talking literally about the challenges that we find ourselves in, that particular situation. What are some practical tips that you can give that can help us avoid those situations, when we find ourselves going towards that?

Dr. Tony Attwood: Yeah. I think [another?] way of describing it, not a curse, is the price you pay for some of the success. That the price you pay is personal, and other people often don’t see it. So the person with Asperger’s is successful and then goes home or goes to their bedroom and totally crashes. Now, in those situations, some sort of advice is find out how long you feel you can cope in a social setting. Now, that may vary from day to day—good days and bad days—but then have a plan of how you can retreat from that situation with an appropriate almost excuse or justification.

So you may think: “Okay, we’re going to meet up or going to do something social or whatever it is. I could probably cope for about an hour at most. Okay. I need a plan, because they’re going to go on for two to three hours, for me to get out after an hour. So I’ll need to make an appointment. Somebody can give me a phone call on my cell phone or something, so that after an hour, when my capacity’s been completely exhausted, I can go, but with a sense of justification.”

Sharon daVanport: Okay. I see. And when we talk about the differences, too, I want to get back to teenagers for the parents out there. What are some things that parents can do to help girls. I know, I was a teenager on the spectrum, and this means boys, too. I mean, boys want to fit in. Teenagers just want to fit in, so much. Girls, however, are making those choices to be able to blend in an do some things. What can we as parents do to help our daughters realize that it’s not always necessary to have to pretend through a situation:? How can you get a teenager to even take those chances?

Dr. Tony Attwood: It requires a sort of maturity and insight into yourself and acceptance that you are different, and that teenager is desperate to be viewed as just the same as everyone else. The peer pressure in adolescence is horrendous for such individuals. So sometimes when parents are saying: “Just be yourself, be true to yourself,” it’s very hard for the teenagers to accept that, especially if the parent hasn’t fsced the challenges that they are facing.

One of the things we’ve been developing in Brisbane, Australia—two things. One is at our clinic, Minds and Hearts. we have teenage girls with Asperger’s groups. So in other words, they’re girls with Asperger’s who support each other, in terms of ideas and strategies. And in part, it has a greater credibility, because it comes from other girls who are facing the same situation.

Sharon daVanport: I see. Okay.

Dr. Tony Attwood: But we’ve also developed in Brisbane a new group that Camilla has started and others that are mature women with Asperger’s Syndrome, who are mentoring the teenagers.

Sharon daVanport: Oh, nice. Okay.

Dr. Tony Attwood: And so they’re saying: “Yep, I felt like that, but I realized it nearly killed me.” Or: “I was exhausted.” Or: “It wasn’t worth it.” But it has credibility, because they’ve been through it. And as a teenager, you have a natural antagonism to parents. They’re the enemy. But when you have someone who’s outside the family who’s been a hero in many ways of coping, their advice may be listened to more than a parent.

Sharon daVanport: So what you’re saying is that it’s good to get these girls involved in girls’ groups and have mentors and people they can look up to?

Dr. Tony Attwood: Yes, because the mentors have been through it, and the advice that they give is usually highly practical. But they’ve also given information on the long-term consequences of what that teenager may be doing, and so they may say: “Well, you’ve chosen to go down this path. You actually have choices. There are different paths you can go down, and these are the options. It’s up to you to decide what to do, but you need to know the particular outcome of this path that you’re going down.”

Sharon daVanport: So as parents, we can separate ourselves from that, and realize at that point—and I can say this with confidence, having raised teenagers, that is a tough time, when you don’t need to be your children’s friend. You do need to be their parent, and that’s a real critical time during those teen years, so I like that idea of stressing a mentor kind of relationship.

Dr. Tony Attwood: Yeah. It’s just that their neurotypical peers really may not understand, and they need someone who genuinely sympathizes and empathizes with their situation. And that is what they need at that stage.

Sharon daVanport: Right. You were talking about there in Brisbane having girls’ groups. What ages do you have? What do you recommend for other—?

Dr. Tony Attwood: Oh. This is sort of a pre-puberty group, because they’re interested in their own sort of things and their own sort of social relationships of friends at school amongst the pre-puberty girls. But then the teenagers have their own issues, in terms of boyfriend/girlfriend relationships, their vulnerability to sexual predators, the dating game, but also the pressure at school to be part of the peer group, the horrible, bitchy girls, and how to deal with those. But then when dealing with the adults with that support group, it’s looking at careers and relationships and society’s expectation of you as a woman.

Sharon daVanport: Right. That’s nice. When you’re talking about taking those girls at different stages, what do you recommend for when we’re looking at talking to girls about, I guess it would be a natural thing about dating and stuff. But what are your recommendations? We know there’s so many vulnerabilities that females have on the spectrum. I really encourage parents to really be honest with their children about these things, because we take language very literally. At times I know I do; I could be the first to say that. And so we do find ourselves in vulnerable situations, maybe just by miscommunications, not picking up on subtle cues, and when it comes to dating kind of things, are they working with that in the girls’ groups, too?

Dr. Tony Attwood: Oh, yes. It’s one of the major topics. But the best advice actually came from Liane Holliday-Willey, who unfortunately, did come across a number of predators. But what she did was have a group of friends or relatives who were good at character judgement and spotting what I call “the wolf in sheep’s clothing.” Some neurotypicals are really good at identifying those who appear credible, but in fact are not.

So when you meet that person, make sure that they also meet one or two people you know and trust, seen to be good at identifying good guys versus bad guys. And after that time they’ve met them, you say to them, when that person is gone: “What do you think? Are they genuine or are they really too dangerous, in the sense I’m listening to what they say, not what their intentions are?” And if those friends say: “Nope. I think they’re okay,” you go to the next stage. If they say: “Oh, I’ve just got this bad vibe about them. I just wouldn’t trust them. I wouldn’t go out with them,” in that case, don’t go near them again.

Sharon daVanport: And I think that’s important to stress to people on the spectrum, whether they’re male or female: that it’s important to have a good support system. It took me a while, I don’t know if it’s just because I’ve been so independent for so many years, to really learn to trust other people and their judgements, because I can’t always see what is right there. I don’t pick up on a lot of the subtleties. So it was a matter of conditioning myself, and I think that that’s really good advice, Dr. Attwood, to really, really reach out and trust other people, to build a support system.

Dr. Tony Attwood: Some women with Asperger’s can get it eventually, but we’re at the moment talking about the teenagers who sometimes become intoxicated by the attention of someone, that they’re actually there and they’re pleased to see them and all those sorts of things. What they don’t realize is this person’s intentions are not honorable.

Sharon daVanport: Right. And that is so true. The next thing I wanted us to touch about was a conversation I had with you before, and we got really good feedback every time I’ve ever talked to anybody about this topic. A discussion I had with you on females on the spectrum and their ability really have a sixth sense about them. Talk to us a little bit about that. That was just an amazing conversation I had with you before about that.

Dr. Tony Attwood: This is not exclusive to the women; some of the men can have it, too. It’s the ability to walk into a room and just sense danger or negativity. [Chuckles] What they’re doing is not the usual channels of facial expressions or body language or tone of voice. I think what happens is that there are many channels actually to assess people and the situation, and for survival, our species has had to have a variety of mechanisms.

We’ve talked about people who have a sixth sense, who seem to sense danger: that there’s somebody behind, or that there’s just something going on. And I think some of those with Asperger’s have a heightened awareness of that, like they have a heightened sensitivity to sound, light, taste, touch, texture and so on. So I think there can be a heightened sixth sense, and that person may not know how they got it, but they just feel it. And that’s usually something that they can’t define what it is, and that leads the person with Asperger’s to really feel: “Do I talk about this? Do I say anything about it?” I’ve known some with Asperger’s, for example, know when someone’s pregnant when they haven’t told anyone. “Oh, you’re pregnant.” “How did you know?”, etc. It’s those sorts of things that can occur.

Sharon daVanport: Right. My teenage son has Asperger’s, and he just has an ability to pick up certain things, but I have to work with him a lot just trusting his gut and instinct, because he second-guesses himself. He knows that in so many social situations that he has to work hard and he might not catch subtleties, and he might feel later that maybe he didn’t quite understand something right. So then he doesn’t trust his gut; he takes it to the next step and just doesn’t even trust himself, and I have to encourage him: “No. Go ahead and trust that gut feeling.” Every time he does, he’s right.

Dr. Tony Attwood: Yep. I think what you can do is open up all channels and not fear those channels. And sometimes you can pick up messages, but they’re not by the conventional facial expression, tone of voice. I think something else is being picked up that exists in the animal kingdom, could exist in humans, but in some ways we’ve repressed it in our neurotypical way.

Sharon daVanport: I think that’s amazing, Dr. Attwood, to really point these abilities out. I think there’s so much to learn from the human mind and the brain about this, and the instincts that we have that we do need to trust more.

Dr. Tony Attwood: Yeah.

Sharon daVanport: It’s so important because it’s like a person who may have a challenge with their sight, maybe they have better hearing because they’ve learned to tune into that part to communicate. So it’s like, you don’t always need words to communicate and we can trust other avenues.

Dr. Tony Attwood: Now there’s a new book out by Olga Bogdashina, published by Jessica Kingsley Publishers. Now, Olga is very keen on assessment and strategies, the sensory sensitivity, and in her latest book, she actually explores the sensitivity in the sixth sense, which gives it now some credibility.

Sharon daVanport: Okay. That’s just amazing. Well, I know that we had just a limited amount of time to have with you, because you’d just gotten into Canada today. So in wrapping things up today, I wanted to give you an opportunity to just say anything to our listeners that you’d like—anything to anyone on the spectrum. Give us some words of encouragement. First of all, before you do that and close out the show, what is your website information, Dr. Attwood, so people can go there?

Dr. Tony Attwood: Oh, TonyAttwood.com.au People can also be interested to know that when I was in Dallas, Future Horizons asked me to do an hour and three-quarter session just on girls and women and have it recorded on DVD. And this should be available probably in about a month or two’s time.

Sharon daVanport: Oh, really. Okay.

Dr. Tony Attwood: So if you Google “Future Horizons” and “autism and asperger’s” you’ll find them. That should be available. It’s nearly two hours, actually, that I talk about girls and women and that can be something that people can then show to others to give credibility to what they know.

Sharon daVanport: Okay. So it’s an actual DVD you were filmed doing.

Dr. Tony Attwood: Yep.

Sharon daVanport: Okay. And I know who Future Horizons is. That’s really good to know. So it’s almost a two hour presentation that you did there in Dallas?

Dr. Tony Attwood: Yes.

Sharon daVanport: Okay. That’s good to know. All right. Well, listen, even though it was very brief today, our discussion, I just so much appreciate you taking the time to stop by and visit with us here at AWN radio. You go back on Friday, then?

Dr. Tony Attwood: I do, Sharon, and thanks so much. You’ve asked some very good questions.

Sharon daVanport: Well, we’d like to have you back again the next time you’re in the States, so we’ll be in touch.

Dr. Tony Attwood: I think that’s an excellent idea. Mark me down for that.

Sharon daVanport: Okay; all right. Thank you, Dr. Attwood.

Dr. Tony Attwood: Okay. Thank you, Sharon.

Sharon daVanport: Okay. Bye-bye.

[Dr. Attwood hangs up]

Okay, everyone, that’s going to do it for us here on AWN radio, the Autism Women’s Network on Blogtalk for this special Tuesday edition with Dr. Tony Attwood. This’ll be available for podcast as soon as we’re done here, so you can always go over to our radio page and access that anytime. Again, this is Sharon daVanport for AWN radio, and have a great day.

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