Other People's Words

Valerie Paradiz

Posted in Uncategorized by Tera on April 2, 2011

This is a transcript of Autism Women’s Network’s interview with Valerie Paradiz about being a woman on the autism spectrum, as well as her work with the Autism Research Institute.

[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]

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: