Interview with Dr. Shana Nichols about autistic girls and women
Sharon daVanport: Greetings, everyone, and welcome to AWN Radio. This is the Autism Women’s Network on Blogtalk radio. If you’re listening in from the US, this is Monday, June 28, 2010. Our friends from the other side of the world, however, are already living out Tuesday, June 29. So welcome, all of you, wherever you are. As regular listeners already know, AWN Radio’s fellow host Tricia Kenney is here with bells on her fingers and rings on her toes. Is that how you say it, Tricia?
Tricia Kenney: [Laughter] “With bells on.”
Sharon daVanport: [Laughter] Am I doing good for my bumbly sensory processing dysfunction that’s going on today and my partial numbness in my tongue and my words being disheveled, as you heard last night?
Tricia Kenney: You’re doing great, yeah. Don’t worry about that. Yu have a very understanding audience.
Sharon daVanport: I did wanna mention to everyone, throughout the show if I seem to just get a little bit verbally dyslexic—say words backwards and stuff—I’ve had a family tragedy happen…a family friend [due to] domestic violence was murdered. It’s made the national news and she worked for my father at his store for the last ten years. I’ve been dealing with that over the last 48 hours, and so I just wanted to let everyone know that, as is typical for those of us on the spectrum when we experience stress, we’re going to end up having that come out in a very obvious way.
Tricia Kenney: Any time there’s a tragedy, something so horrific like that happens, everybody on the planet has a hard time dealing with it. Don’t worry about any of that, and I hope you know that you’re loved and you have support from those around you and from me completely. Don’t worry about it. You do what you need to do, and you’ll be supported, okay?
Sharon daVanport: Thank you, Trish. I know that. We had a great AWN board meeting yesterday, and I just really appreciate how well that went. [There are] some great things that we have in store that we’ll be sharing with our listeners later.
One thing I wanted to mention, and if you could take this away, Tricia, because I know that you’re better at explaining how LifePROTEKT works. We’re getting ready to announce our lucky listener. Tricia, if you could explain to everyone what LifePROTEKT is before we bring our guest Shana Nichols on, and let them know that someone is going to be awarded the GPS prize.
Before I hand it over, I just wanted to ask you something, Tricia. Didn’t we go ahead and agree that we would announce it on Thursday’s show, because we decided to keep it open until the very last day of the month. We’ve had so many people doing entries for the contest, wanting to be eligible. We have the gentleman who’s actually the vision behind Morgan’s Wonderland of Texas, the amusement park. We have him on Friday, and so we’re gonna announce it Thursday. Can you go ahead and explain to everyone? I’m gonna go take a break just real quick, okay?
Tricia Kenney: Essentially, we had a gentleman on the show named Lou Giuffre, and he has a company called LifePROTEKT. They help find instruments that are GPS locators, and they’re generally for anybody who has wandering problems—whether it’s somebody who’s autistic or somebody who has Alzheimer’s or any other issue. Although I don’t think it needs to be limited to that, simply because any child can end up missing. It’s just a way to help track your child down if they do become missing or if they do wander off or something happens.
It’s really an easy way to find your child if you can get the service in your area. It pings back to your cell phone and it gives you the location of where the person is. It can save a life. You can’t put all of your faith in it because there are gonna be interferences and so on and so forth, but if you can get it in your area, if your area is a place where it would work for your family and the system, it’s a wonderful way to help protect your child, and to give you a little bit extra piece of mind in case something like that happens.
I know in my own experience, my son has run off several times. Really, there’s nothing scarier a parent can experience. If you have something like this that can help find that child and do it quickly, it makes all the difference in the world. We will be giving that away on Thursday. I hope anybody that you know that has that issue does reach out to us and let us know about it so they can be put in for the entry.
We will be doing this every month. One family will be getting the device, whether it be a watch or whichever way works for your family or that person with the GPS device in it, and also one year of free service for that device as well. So that’ll be happening every month. This is just the first time we’re gonna be doing it. If you are interested in doing that, if you know somebody who could use this, please write to us at info AT autismwomensnetwork DOT org. Let us know who you are, what the story is, and how to get in contact with you. We’ll enter your name in for that drawing, so I hope you’ll get involved. Like I said, we’re gonna be doing this every month, so keep doing it and hopefully your name will get chosen and then another person will be a little bit safer. Why don’t we go ahead and bring in Shana?
Shana Nichols: Hello?
Tricia Kenney: Hi, Shana. Welcome to the show.
Shana Nichols: Hi, ladies. Thank you so much. It is such an honor and a pleasure to be here today with you. This is my first time ever on Blogtalk radio, so I’m a newbie, and I’m really excited.
Sharon daVanport: Well, we’re really excited that you could be with us today, Shana. I wanted to let everyone know that we’re especially excited about Shana being with us today, because she is amongst other things an AWN advisory board member. She is set in place to help us as we grow, and when we need to call upon her as an organization to get her advice, she’s going to be there for us. She’s just been someone that we’ve been so proud to have as an advisory board member.
Shana, I would love to read your bio, but it would take probably half the show. [Laughter] You’ve just done so much. It’s just amazing. I’m sincere. You’ve not only authored a book, but you’ve done research, you’ve just started a new clinic in New York. Gosh. Where do we begin, Trish?
Tricia Kenney: You’re autistic yourself, correct, Shana?
Shana Nichols: Pardon me? Sorry, I missed that.
Sharon daVanport: No, I don’t think she is.
Tricia Kenney: Oh, I thought she was.
Sharon daVanport: Oh, well maybe I’m wrong.
Shana Nichols: No, I am not.
Tricia Kenney: Oh, okay.
Sharon daVanport: She’s neurotypical. [Laughter]
Tricia Kenney: Oh, I misread something.
Shana Nichols: I’ll have to talk to you guys about [feeling welcomed?] to the club sometime. [Laughter]
Sharon daVanport: Hey! We’ll make you an honorary member. How about that? You wanna be an honorary member? [Laughter]
Tricia Kenney: How’d you get started working with girls in particular who are autistic?
Shana Nichols: My very first experience working with girls, anyone who’s read my book, I talk about her in the introduction. Way back in graduate school, many many days ago, I worked at a preschool. She was about [unknown] three, golden-haired, curly-curly-curlied, beautiful young girl with autism. At that time, she was the first girl with autism that I had met. I had primarily worked with preschoolers in a first-diagnosis clinic. As you guys well know, event then, 10-12 years ago, it was boy after boy after boy after boy. She was the very first girl I worked with. I fell in love with her, had a wonderful, wonderful time working with her in her preschool on readiness skills, social skills,et cetera.
When I finished my graduate program and moved to Colorado to do my internship, she just never left my mind. She just stayed with me—was always there. When I moved to Colorado for internship, I worked on a diagnostic team that was a school-age team. Again, even at that time, there were few programs that had a lot of school-age diagnostic teams that looked a lot at co-morbid conditions: anxiety, OCD, ADHD. At that time, we did start to see more girls—again, in that preadolescence, early adolescence phase.
Just remembering the young girl I was working with, I spoke to my supervisor and I asked: “We’re not seeing a lot of girls. There are a lot of families out there who have nowhere to turn to. There’s no resources for them. Could I start a group this summer for girls? A girl talk group, for them to learn how to call each other on the phone, learn to have a party, work on conversation skills.” It was a huge success. We had so many families contact us. The moms themselves were just so happy to have finally found a community of other families who were sharing their experiences with them. The girls themselves had been in social skills groups where they were the only girl. They often were just beyond thrilled, and as part of that group, I began to explore a lot of the issues that I’ve seen girls and women face: whether it’s [unknown] issues, puberty, interest in dating, mental health and anxiety, really low self-esteem. From there it just really took off.
Moving to New York was the launching point, where I began to work with a couple of my colleagues. We continued to develop our girls’ program, and I finally just said: “Enough is enough. There are no resources out there for parents of girls and for clinicians. So it’s time for us to write the book.”
Tricia Kenney: Awesome. Have you found that the numbers are still the same—the 4-to-1 ratio?
Shana Nichols: It’s very interesting. In the research that I did for the book and the research I’m continuing to do. The 4-to-1 ratio, that still seems to be somewhat accurate with respect to individuals with more classic autism. However, Tony Attwood, a lot of the groups in Britain and in Denmark are talking about the ratio when you see girls and boys in community clinics, Tony Attwood talks about a 10-to-1 ratio that he sees in community clinics.
In February, there was the first ever Autism in Women conference held in the UK. The Lorna Wing [unknown] sponsored it; I was very disappointed that I didn’t get to go. But the group there was saying that once they really understand what the phenotype looks like in girls and women and account for girls with greater skills in communication and socialization who are able to mask their difficulties, they think that the ratio is actually probably gonna be closer to 2-to-1.
Tricia Kenney: Wow.
Sharon daVanport: Shana, can you elaborate a little on the ability for females to mask being on the spectrum? Of course, we know that when situations happen under stress and different things, it’s very obvious. But oftentimes, as I’ve even read in your book, those are the times that we’re even overlooked and given a wrong diagnosis. They don’t even think “spectrum.” Oftentimes females are misdiagnosed. Can you elaborate on that?
Shana Nichols: Absolutely. There’s a number of issues related to this idea of “masking” or “camoflauging” and clinicians who’ve really been working with girls have been seeing it and are starting to characterize what it means. Again, the research is really limited. Please don’t take anything I say to have very conclusive weight. But girls compared to boys who have the higher verbal skills and stronger cognitive abilities, girls tend to have stronger social communicative skills and stronger social skills in general. Whether they’ve been socialized early on and have developed those abilities better than the boys have, it’s really hard to say. But the coping skills of almost being able to stand back and watch and intellectually interpret what’s going on, really learn how to join conversations, say hello, say all the right things, but do not have an intuitive, natural understanding of what’s going on.
The girls have been able to fly under the radar, and unlike boys, they often have what we call “mother hen” friends. The girls will develop friendships in grade 1, grade 2, grade 3 and the mother hen, nurturing girl supports the girl through early elementary school. It’s not until they hit middle school when the complexities of the social dynamics jump dramatically, that the girls who’ve been just hanging on, we really start to see them struggle.
Sharon daVanport: That’s what I did, Shana. Can you tell us what the specific traits that you’ve seen in your research are that parents out there listening can say if they start seeing this in their daughter and they thought that they were doing just fine. Then all the sudden, in middle school, junior high, they start really showing these different qualities or traits that could be troublesome?
Shana Nichols: Sure. Early on, friendships are often very play-based and there’s not a lot of deep communicative talking, sharing thoughts and feelings. For girls, we know as soon as middle school hits, friendships shift to really be a lot about talking and talking on the phone. You start to see girls who were somewhat more included and involved start to drift more and more to the periphery. They’re just not able to keep up. There’s a fast pace to the interchanges of female relationships in middle school [unknown], where it’s just back and forth, they’re chatting, this boy, that boy. “Did you see what she did? She turned her back to me,” et cetera, et cetera.
The girls really start to struggle with that. You might see, again, that drifting to the periphery; fewer contacts with peers that they once spent more time with; withdrawal; anxiety; reluctance to participate or join in in a social situation, [depression symptoms?]. Along with the anxiety and feeling overwhelmed, you might tend to see more self-stimulatory behavior, retreating into special interests that the girls may have enjoyed but not spent as much time participating in as they’re trying to cope and trying to calm themselves down. That’s taking the place of being part of that social network.
Tricia Kenney: Where does this become a problem, though? Where you might wanna seek out a diagnosis to get supports or something? I think a lot of us growing up: “Well, who cares what they’re doing over there?” I overheard their conversations and [thought] “They’re trite” and “They’re stupid,” and whatever. You feel above that or you just don’t see the point in getting involved in those sorts of things. Where does it become an issue where it’s going to effect your life later on?
Shana Nichols: Girls who present, we look at social interest and motivation. Some girls are absolutely not interested in getting involved with the teen drama and all the other stuff that happens. Other girls that I’ve worked with very much are, and are completely heartbroken and devastated and get themselves into a lot of difficulties because they don’t have a true understanding of what real friendships are about. The end up setting themselves up for really being bullied and made fun of. In their desire to have positive social interaction, they need to really understand better how to go about doing that. So that’s a situation where seeking some assistance is gonna be really important.
For girls who really just aren’t interested in the regular teen world, how are they connecting and communicating with peers? Have they found a niche—a wonderful, accepting niche of teens or kids that are interested in art and theater and math and anime, and they’re very accepted? Maybe that’s not gonna be as much of an issue.
Some of our kids who really are not interested socially run into difficulties when they have goals related to a career. They can be very bright and are very interested in pursuing a career in graphic design, and this is when I work with teenagers about buy-in and motivation. “How is what we wanna do together gonna meet your goals? You want a career in graphic design? Fabulous. You’re super talented; I think you’re gonna be great at it. However, X Y and Z are really important skills that you need to develop in order to be able to achieve that. Unfortunately, that does mean in college maybe doing some group work; being able to interact with a professor; being able to interact with clients.” So I might have kids coming in who are just absolutely not at all interested. But we come to some common ground once they’re able to explore what their goals are in the long term.
Sharon daVanport: You mentioned Dr. Tony Attwood. The last time that I spoke with Tony, he encouraged AWN to move forward with continuing to really help people appreciate that there is a need for gaining a greater understanding of those qualities that you just described—the unique qualities that autistic females exude. Tony said that it’s not just him. Recognized experts all agree that to further our knowledge of these specific qualities and issues related to autistic females will lead us to a greater understanding of the spectrum as a whole.
Oftentimes, Tricia and I and the directors with AWN are asked: “Why do you have just an Autism Women’s Network? Why do you have a specific network for females?” We try to explain to them that even if you have a son, if you wanna understand your son better, there are experts out there like Tony that really want to help people appreciate the importance that the entire spectrum is going to one day come together in a greater understanding. How would you explain that to our audience, seeing that you specialize in female-specific autism?
Shana Nichols: I work a lot with girls and women, but I also work with boys and men. We know that there’s a genetic component. In order for us to further understand the biological and neurological and neurochemical underpinnings, it’s absolutely critical that we have an understanding of the experiences and presentation of both males and females. Unfortunately, societal pressures and ideas still very much play a role in how boys and girls and men and women are socialized. As a society, it’s very important to understand how that plays a role in symptom presentation and people’s experiences of their skills and their strengths and their areas of weakness.
It’s been a long time coming. I feel like girls and women have needed their own group, their own awareness and understanding. There has been such limited research done to truly understand autism. It really is based on a male prototype. That’s not autism. Autism is not a male condition. Therefore we really need to expand and understand both the female and male experience, compare it to neurotypical males and females in order to shape a real comprehensive and whole picture of what autism spectrum disorders are and what they mean for everyone. So while I feel like females have needed to have that, we need a push to have our own place, our own vision, our own presence, we’re then gonna need to move and say: “Okay, let’s pull everyone together to really understand, moving forward, how best do we all work as a group?”
Sharon daVanport: In your practice, do you treat adult females or do tend to get the youngsters? What do you find that your population of clients are?
Shana Nichols: Yeah. With [unknown] therapy right now, I myself actually have a lot of adult females—young adults between the ages of 21 and 35. I still consider myself a young adult. [Laughter] We’re working with a lot of self-understanding and self-awareness. That self-insight, to me, is so critical. That’s a primary goal. Emotional regulation is huge, and really understanding one’s emotional experiences. Some of the women I’m working with are in college or are really wanting to go, so navigating college and the work experiences, and then relationships. A lot of work on: “Am I ready for a relationship? I’ve been in a bad one.” Really trying to understand those issues.
My colleague and my student—she’s getting her postdoc right now—she’s working with a lot of 7-12-year-old girls. I just love to see this progression. These girls are really working on the core understanding of emotional experiences, behavior regulation and social and communication skills. I look at them now and how far they’ve come within the last year that [unknown] has been working with them. To see this new future for them. They’ve gotten all of these foundations in therapy that the young women that I’m working with haven’t had. So we really do see the full range, from early elementary school through a number of adolescent females who are coping with puberty, menstruation, hormonal issues, and then through young adults.
I have had some phone calls lately from women who are in their 40s and 50s who are interested in a new diagnosis and wanting to reflect and process what that has meant for their life and where do they go next? The song that you guys had at the beginning, the line that said: “Today is the day I will begin again,” I just love it. I feel like for so many of the young women who are coming in, this is the start of their beginning. They’re gonna be moving forward and achieving all of their goals and learning how to be with a much better understanding of who they are and their potential.
Tricia Kenney: Your practice is in New York, correct?
Shana Nichols: It is.
Tricia Kenney: How are these women are able to access the program? Is there an [unknown] requirement in New York, where you have to have been diagnosed by a certain point in order to get services like that? Or is this something where it would be private pay? How are women able to access programs like this?
Shana Nichols: A lot of it is private pay. With our clinic being very new, we aren’t in a position yet where we’ve explored [unknown] insurance. We do offer sliding scales for clients who struggle to access services. When I have students and trainees who I supervise, I’m able to offer a reduced rate in order for them to be able to be seen. I’m also trying to start a distance consultation model. I’ve had a lot of calls from adult women and families who can’t seem to locate professionals in their area who have the expertise in working with females. So we have referring issues often with Skype. We’re having some computer-based back and forth work. I’m excited. That’s an avenue that I’m exploring.
We also have an out-of-town evaluation clinic, where we have an evaluation this summer. A family is flying in for a four-day stay. We have worked exploring partnerships with some local hotels to understand the importance of what we’re doing and to received reduced accomodation. Again, there are not a lot of professionals who have experience in working with girls to really be able to detect what’s going on when it is a complex diagnosis.
Tricia Kenney: Right. Going back to what we were discussing earlier, the issue is a lot of these women as children were misdiagnosed or weren’t diagnosed at all with anything, and didn’t get any services. All that stuff starts coming out as an adult and they start having all these problems and they finally get a diagnosis, but then there are no support systems for them. I think it’s great that you are starting something like this, and that there is somebody out there who is specifically studying issues with females. Hopefully this can spread. I don’t know how much work you’re doing to spread the word and educate other people in other areas of the country as to how to work with autistic females and maybe open those doors a little bit more for autistic women.
Shana Nichols: I’m working with MEDS-PDN. They do professional continuing education credits for clinicians. I have a webinar that’s scheduled in August. Parents and women will certainly benefit from the information involved, but it really is designed for clinicians and educational personnel, social workers, psychiatrists. It’s about understanding and supporting females. But we don’t have a Best Practices approach to identifying spectrum conditions in women and girls. I’ve pulled together a webinar that walks people through: What are the things to look for? What’s a diagnostic evaluation comprised of? Then these are some of the key issues that the women and girls in their practice are going to face, whether it’s puberty, PMS, potential issues with eating, most definitely anxiety and emotional regulation difficulties, relationship issues.
My hope’s to get people much more interested in learning how to work with girls and women. I get e-mails and calls daily: “Do you know anyone who’s near us?” More often than not, unfortunately, it’s “No.”
Tricia Kenney: Right.
Sharon daVanport: I wanted to mention: As Tricia knows, she’s going to go ahead an pick up the rest of the show as solo host. I have an appointment that I have to get off to, so I am going to sign off now. I wanted to thank you so much for coming on to our radio show, and let you know that we so appreciate that we have you on board as our advisory board member to help guide us in the very issues that you’re speaking about today. I want to thank you so much for that. I will be in touch; I’ll be shooting you an e-mail later this evening, okay?
Shana Nichols: Absolutely.
Sharon daVanport: Okay.
Shana Nichols: Take care.
Sharon daVanport: I’ll talk to you later, Trish.
Tricia Kenney: Okay. Thanks, Sharon. Take care.
Sharon daVanport: Uh-huh. Okay. Bye.
[Sharon hangs up]
Tricia Kenney: For those women calling for resources, what can they do in order to help themselves with issues they’re having? A lot of self-regulatory issues I know come up, and a lot of relationship issues come up. Can you point people in a direction as to what they can do to try and help themselves in the meantime?
Shana Nichols: Yeah. One of the things that I absolutely recommend is your website, first and foremost: “Go and check out AWN.” Again, there are not very many resources and books yet, so the ones that have been written that are really exceptional for women who want to read experiences of other women, whether it’s Liane Holliday-Wiley’s books, Rudy Simone’s new book, Donna and Temple’s work. They’re really trying to wrap their head around these experiences that these women have and what fits for them and what doesn’t.
Tricia Kenney: [There are also?] generational issues as well. There are women in their 60s right now getting diagnosed, and that’s so different from somebody who’s 13 getting diagnosed. There’s a lot of difference in their experience and how life was in society in general. All the information will not pertain to every person.
Shana Nichols: That’s very true. I talk to women about if they are working with a practitioner who is open-minded and would like to learn more. I’ve consulted with a couple of psychologists who’ve had women join their client base who say they haven’t really been sure how to understand and how to work with them. So I’ve done some consultation that way, to encourage their current practitioners to reach out and explore some of the different readings and contact clinicians for consultation. That’s been helpful for a number of women. I think really, really getting involved with local support groups and finding a community that they feel comfortable in and then can help begin the process of problem-solving and what the next step should be.
Tricia Kenney: Right. With our website, it’s just amazing, when you read through the forums, how many women are going through the same things or have experienced similar things and the comfort that you get out of that. So many of us feel very isolated or alone in this journey, and there are very few support groups out there for women exclusively. We generally have a lot to say, especially when it comes to raising children and relationships and all these things that happen in life. When nobody understands where you’re coming from, it really cuts you off.
Shana Nichols: Yeah, it absolutely does.
Tricia Kenney: You’re doing a thing called Exhaling Beauty. Could you tell us a little bit about that? I wish I could go. It sounds so wonderful. If you could explain a little bit about what that is.
Shana Nichols: Absolutely. It’s something I’m so excited about. Liane Holliday-Wiley, she was a mentor for me when I wrote my book. I was able to connect with Rudy Simone, who just published Aspergirls and I wrote an endorsement for her book. The three of us really connected and were Skyping and e-mailing away. We just thought: “How wonderful would it be to put together an event that really is all about celebrating females on the spectrum? All the of talents and the strengths and all of the wonderful things that the girls and women have?” I’d also been in touch with Eileen Miller and her daughter Kim is an exceptional artist.
Tricia Kenney: Yeah, she’s wonderful.
Shana Nichols: She has this painting that she’s drawn which is entitled: Exhaling Beauty. We just loved the idea of putting together an evening that’s not an academic conference; it’s not a support group; it’s not really formal. It’s an evening in San Francisco with wine and cheese and celebrating arts, and to have people coming together to really connect and form a community.
Liane, Rudy and myself will be speaking a little bit at the event. It’s September 18, from 6-10 PM at the Hotel Monaco, who have been so kind in working with us to really make this event affordable and doable for our group. Kim and Eileen will be there with their art. We’ve put out some calls if there are local artists who want to come—women or men with autism who want to share their artwork and their talent. We would love to have them join us.
The idea really is that celebration, and having everyone come together and form that community. We have another event that is scheduled in March in Connecticut, and we’re hoping to be able to take it on the road. A lot of people have said: “When are you coming to Texas? When are you coming to Ohio?”
Tricia Kenney: [Laughter] Don’t forget St. Louis.
Shana Nichols: We need to be everywhere, and we would love to. Would absolutely love to, and have more people become involved. I feel it’s so important for the professional community to really have a wonderful, wonderful relationship with the clients they’re serving, the people they’re working with. I just feel so blessed to have developed relationships with Liane and Rudy and Sharon, and I’m starting to get to know you, Tricia. Without that collaborative process and being really open and communicating and sharing, we just get stuck. So to have events where we have mothers and professionals and educators and women all together with the same goal and the same idea of what we wanna accomplish, to me, it’s just beautiful.
Tricia Kenney: It absolutely is. I think it’s wonderful that you guys came up with doing this. I know there are some other organizations as well that do these things to highlight and showcase the talents, the beauty, just how wonderful people are, and not sit there and focus on the clinical side of things.
Like I said, I wish so badly that I could do that, and I really hope that this takes off and that you guys can tour this Exhaling Beauty art showcase or talent showcase. I think the world needs to see that. I think it does a lot for a person’s soul, a lot for their mind and their growth if they can be showcased in that way, and to show that there’s worth. I don’t think that people pay enough attention to that. I think a lot of schools are starting to realize it’s a positive approach that works, instead of negative consequences. The more we spread that around, it can only improve life for us all. I think that would just be a wonderful thing if you could travel around with that.
I know we’re going to be working a lot on doing positive things in our communities as well. AWN is still young, but we’re gonna be doing a lot of work out there so that we can start having events similar to that. Just places where people can get together, be themselves, and talk about the things that they love and not worry so much about working on your problem. Obviously, there’s a place for that as well, as we’ve talked about before, because there aren’t a lot of places for that, either. But we wanna be able to do both.
Shana Nichols: It amazes me how much AWN has accomplished in such a short period. It really does speak to the passion and the energy and just how excited people are to be able to offer this to the community. It’s exceptional.
Tricia Kenney: I think it really speaks to the need. I think so many women saw this and were like: “Finally!” It’s just like: “Wow.” Everything that we’ve been doing so far has just had an awesome reception and it really has motivated us to get going and to keep working and to try to move things forward even more. It’s also giving us a chance to get into our communities to see what’s going on here already. What’s going on here? What can we do? Where are all the autistic women, and what are they doing? Is there any support? What can we do to improve that? We’re seeing there is a lot of need out there. Facebook has been a great tool for that, as well. We’re meeting women all over the country and the world, and they’re letting us know: “Hey, I’m so isolated; I’m by myself. Who’s out there for me?”
It’s been a lot of work. There’s so much that needs to change in the medical practice and mental health and all of that, but we’ll take it one step at a time. I heard that you were working with Eric Chessen recently, doing his program.
Shana Nichols: Yeah. We have a great project called Get FRESH!, and it’s about healthy lifestyles. It’s a parent-teen education and skill-building group that includes the fitness component, which Eric is spearheading, and then also healthy eating and sleep and stress management and leisure. All the things that we look at when we think of quality of life. Ultimately, for everyone, having a high quality of life and being able to be happy doing what you love doing is so important. Yeah, it’s been a lot of fun working with Eric on that project.
Tricia Kenney: We just had him on a couple days ago, and he’s just an awesome guy. He’s just so passionate about the work that he does, and he really cares about the autism community. It shines through. I think that plays a lot into the self-esteem issues that a lot of us experience as we’re youth, but also into adulthood. The things that hold us back because we don’t feel like we’re graceful enough. I’ve talked with quite a few friends. I don’t know if this was part of your study or not, but we talk about our clumsiness issue.
Shana Nichols: Yes, absolutely. I’m working with a number of teen girls right now. They want to be able to go to the mall and hang out with friends, but absolutely are petrified and can’t manage an escalator. They are really embarrassed by that and really want to be able to overcome it, and have kept it from their friends and have isolated themselves when the girls are going out to go shopping. That motor planning and coordination and all those things. Think about women as a whole, they’re considered graceful. It’s very, very hard. We’ve been looking at self concepts and self-esteem, and to see these girls master that and be able to get an e-mail, saying: “I went to the mall on Friday,” I just love it. It just made my week.
Tricia Kenney: Aww. That’s awesome. It does change things for you. It changes a lot in your life, and it opens doors that you never would have had the courage to open up before.
Shana Nichols: No. And other people don’t even realize that they are barriers for you, which is really, really striking.
Tricia Kenney: It is. It’s not like you tell anyone: “I stop walking when I see other people walking around me, because I don’t want anybody to notice the way I walk.” It’s your own little torture inside. Who knows if anybody has even paid attention to the way you walk? But you feel they do.
Shana Nichols: Sure.
Tricia Kenney: You have this thing consciously coming forward all the time, and it freezes you.
Shana Nichols: Yep. It becomes very paralyzing.
Tricia Kenney: Wow, this is just wonderful. We’ve got the Exhaling Beauty [event] on September 18? And then your ASPIRE Learning Center is open already?
Shana Nichols: It is; it’s up and running. I can be reached by e-mail: aspirecenterforlearning AT gmail DOT com. You’ll get one of us when we’re here. Those of you who are at ASAN Dallas this year, I’m gonna be there. The Penn State conference in August I’ll be at, and I’ll be at Ocalli in November. So I hope to get to meet a bunch of you.
Tricia Kenney: Yeah. We talk often about all of us getting together, because invariably everybody that we click with is across the country. [Laughter] We would really like to at some point set up some sort of conference for us all to get together and make sure that we can all get there. Maybe even like you’re hoping to do with Exhaling Beauty—start something where we can mobilize around the country and bring women together, just so that we can experience each other and have that comfort of being around people who get us.
Shana Nichols: [Unknown] the opportunities for mentorships for teens who are looking ahead and not knowing what’s coming? To have teens and young adults and women with children and women with grandchildren, just to bring everyone together to share their life experiences and give hope and encouragement would just be fantastic.
Tricia Kenney: Exactly. I just met a women today who’s autistic, and she has an autistic daughter and an autistic granddaughter and an autistic sister. I was so excited. I was like: “Wow! Yay! Finally, somebody in my area, and they get it.” To have that extensive family like that, as well. I was like: “Wow. How unique is that, and to all know about it?” Usually if there is something like that going on, most of them haven’t been identified, even if you suspect.
Shana Nichols: What I’m seeing more lately is that the child is identified, and as part of that evaluation, a mother may be self-reflecting and recognizing some of the presentations. “Wow. I think this might be something that I’ve been working with.”
Tricia Kenney: Right. It’s an exciting time right now, and I’m so happy that I get to be a part of it. I’m glad that you’re a part of it, and helping educate people and bring about the awareness. I’m really thrilled that we get to work on a lot of projects; I’m looking forward to it.
We are running out of time, though, so I do wanna thank you so much for being on this show. I hope we get to talk more after this, ’cause I know I have a lot of questions myself. [Laughter]
Shana Nichols: I’m around. [Laughter]
Tricia Kenney: Thank you so much for being here. [Soon listenrs] will be able to go to aspirecenterforlearning.com to check out what you’re doing. Also check out the book Girls Growing Up on the Autism Spectrum. We’ll be seeing everybody at the end of this week with a new show. So thank you so much for being here, everyone.
Shana Nichols: Thank you.
Tricia Kenney: Thank you. Bye-bye.