Other People's Words

Transcript: AWN interview with Stephen Shore about self-advocacy

Posted in Uncategorized by Tera on January 30, 2010

This is a transcript of Sharon daVanport’s intervie with Stephen Shore about self-advocacy for the Autism Women’s Network radio show.

Sharon daVanport: Good day, everyone, and welcome to AWN Radio. I am your host, Sharon daVanport, and today is Friday, January 22. We have with us today our guest, Dr. Stephen Shore, and he’s going to be speaking with us on the subject of self-advocacy. Are you still with us, Stephen?

Stephen Shore: I’m still here.

Sharon daVanport: Okay. I appreciate you being with us today; I know that you’ve been really busy. You’re just jet-setting all around the world, going to all these conferences, right?

Stephen Shore: Oh, indeed, yes. As a matter of fact, a couple of weeks ago, I spent a week in Singapore doing day-long workshops on autism, and immediately after that doing more workshops in Massachusetts, Texas and Colorado.

Sharon daVanport: Oh, wow. Now when you go to Singapore and other countries, what typically do address in these workshops? What part of the spectrum do they really want you to address when you are speaking to them?

Stephen Shore: Well, in other countries, it’s often a lot like it is in the United States. The subject varies greatly. There are some organizations that really want me to concentrate on young children or a certain part of the spectrum, perhaps where children may be more significantly affected. Others are more interested in Asperger’s Syndrome; others may be more interested in adult issues.

Within these categories, I may talk about sensory issues, educating children with autism, challenges of a good transition to adulthood and success as person with autism. Self-advocacy gets covered a lot, too; even if they don’t want it, I usually end up talking about it anyway. So a number of topics.

Sharon daVanoprt: That’s interesting. I’ve often wondered if they do want you to concentrate on some of the same ongoing issues that we seem to see covered pretty generally here in the United States. I just didn’t know if maybe they had a different take on it. You said some countries just really wanna hear about Asperger’s, though? Is that just something you see more of, because from what I’ve read, there seems to be more of a diagnosis going on with that right now?

Stephen Shore: It’s probably better to bring it down to specific organizations within a country, just like in the United States. In some countries, some things are done a little bit differently. For example, in Singapore, things actually seem to be upside-down, where there are more services for people who are more verbal and they have Asperger Syndrome than ones who are more significantly affected. I think that’s because parents of children with Asperger Syndrome are able to organize, and thus influence the government.

Sharon daVanport: That could make a big difference; I see how that would.

Stephen Shore: In other countries who perhaps have less resources devoted to autism, often you’ll see them concentrating on children who are more significantly affected, because they’re more noticeable. In fact, I remember in one country having a conversation talking about people who may be more verbal who we refer to as having Asperger Syndrome. The person even said: “Yes. We know people who are verbal with Asperger Syndrome exist. We are aware of adults. But with the limited resources we have, we have to focus on children who are more significantly impacted at this time.”

Sharon daVanport: I see. I really appreciate that you’re going to be speaking on self-advocacy; I know that when I first met you out here in Omaha, Nebraska, at our conference just a few months ago, you spoke about self-advocacy, and I really liked the way you did it at the conference and the panel you had. Before you get started, why is self-advocacy something that you enjoy talking about? Why do you feel it’s something that is very important for all of us to understand?

Stephen Shore: I think self-advocacy is so important to learn, because it’s incredibly empowering to the person who is able to advocate. Being able to advocate, this is a person who is able to express what their challenges are in a way that other people can understand and provide support.

So, for example, if someone has a visual sensitivity to flourescent lights, I find what unfortunately most often happens is that the person with autism may not even be aware that this is a challenge to them. Even if they are, there may be difficulty in understanding how to bring that across to their supervisor that working in a room with flourescent lights is definitely going to have a negative impact, and what might be done to help the situation.

Sharon daVanport: When you’re talking to people about things like that, do you typically tell them it’s how they approach the situation that’s gonna make the biggest difference?

Stephen Shore: Yes, I do. That is pre-supposed by self-awareness of what one’s challenges and difficulties may be. In fact, I like to use a three-step process in which to develop an advocacy plan. It seems to work pretty well.

Sharon daVanport: What is that three-step plan?

Stephen Shore: The three-step plan starts initally with scanning the environment. I take the idea of scanning the environment from the work of Valerie Paradiz, who has written a self-advocacy curriculum for people on the autism spectrum and with related conditions that was just published. I wrote the forward to the book and made some contributions to it. I think it’s a great way of teaching self-advocacy.

What I initially do is recommend the person scan the environment. The environment can be scanned for challenges in the realms of sensory, cognitive—or in other words, how we think—and also in socio-emotional. In other words, how do we feel and how do we decode nonverbal cues?

First is finding the challenges through scanning the environment. Once the challenge is determined, then it’s possible to go further into figuring out how you’re going to tell another person about this challenge and how it affects you, in particular. That’s the advocacy effort.

For example, getting back to the issue of flourescent lights, now that I’m aware that I have a sensitivity to flourescent lights, how am I going to bring up this challenge to my supervisor? Ideally, what I might say is: “Gee, I’m wondering if we could change the type of lighting here? Perhaps using an incandescent lamp? I could even bring in my own lamp. How’s that?” Or: “I wonder if I could have a space near the window, where I don’t need to use a light.” That would be an example of advocating for a challenge in the sensory realm.

With advocacy also comes disclosure. If you’re going to ask for a modification or a greater understanding, then you’re going to have to give a reason why. Therein comes the disclosure component. With disclosure, the choice is either to make a full or partial disclosure. In a work situation like this, I would most likely make a partial disclosure. I would say: “These lighs, they give me a headache. I’ve got really sensitive eyes.”

Sharon daVanport: When you say “partial disclosure,” it’s not something that you feel you would have to say to your supervisor: “I’m on the autism spectrum.” You could just say how those flourescent lights affect you. Like you said: “It gives me a headache.” Is that what you mean by partial disclosure?

Stephen Shore: That’s what I mean. In other words, just honing in on the specific aspect of being on the autism spectrum that affects the situation. In other situations, it may be appropriate to do a full disclosure.

Sharon daVanport: What are some of those situations? We’ve had questions coming in that people were excited to hear you talk about self-advocacy. Some of the questions are: “When do you tell your boss?” or “Do you have to all the time?” “Is it always good to?” “How do you know it’s good to?” Just on so many different levels, a lot of people had these questions about employment.

Stephen Shore: Right. You need to think about disclosure and advocacy when the effect of having Asperger Syndrome significantly impacts a situation or a relationship, and there’s a need for greater mutual understanding.

I’m thinking about a friend with Asperger Syndrome who applied for a position as a librarian. As far as he could tell, there was nothing about Asperger Syndrome that would affect his performance on the job, so he chose not to disclose during the interview. He did, however, mention his involvement with the Asperger’s Association of New England, and other Asperger type of activities, and he was ready to explain why he was involved with Asperger Syndrome if it seemed appropriate to talk about it. But the questions never came up and the disclosure was never made.

Sharon daVanport: Like your friend that chose not to disclose during the interview, let’s say you have a situation that arises later. Something could eventually happen that you didn’t foresee when you’re actually working at the business, and you realize it might be better to go ahead and let your supervisor know. At that point, when you decide to go to your supervisor, can you give some tips on how to approach them to let them know?

Stephen Shore: Oh, sure. At this point, if it becomes necessary to disclose, I would use a four-step approach that I’ve developed when either telling people that they have Asperger Syndrome themselves or if they need to tell somebody else that they’re on the autism spectrum.

It starts out by talking about characteristics. Let us say, for example, you have someone serving as a cashier. They happen to do very, very well with mathematics, and as a matter of fact, they don’t use a calculator. But where they are challenged is remembering long strings of information.

This person who’s been working perfectly fine and perhaps some additional duties were added to the job. The supervisor is explaining in detail the procedure for attending to these additional duties. If it seems that the person with autism may have difficulty remembering long strings of information, then it comes time to think about disclosing. What I might do in this situation is start talking about characteristics to my supervisor.

Sharon daVanport: Breaking the ice, you mean? Describing what characteristics someone with Asperger’s might have? You’re just informing them at that point?

Stephen Shore: Yeah, kind of breaking the ice. For example, I might say: “You might notice that I’m really good at mathematics and I don’t even need to use a calculator when I serve as a cashier.” So I might talk about my strengths, and I’d also bring up some challenges. “You might also notice that when you instructed me how to use the electronic cash register, I asked you to stop a number of times while I wrote something down and you might notice that I have little yellow Stickies around my workspace to help remind me of the procedures.”

I’m just breaking the ice by talking about my characteristics, and lining them up: the strengths that I bring to the job and also some of the challenges. What is important is I’m lining up these strengths and challenges, which is the second step. I think it’s important to look for a strength that accommodates for a challenge. That might be: “You might notice that I write things down to help keep me organized. Once I’m able to write them down and can refer to my notes, I happen to perform very well on the job.”

Sharon daVanport: I like the way you’re doing that. You’re giving the characteristics; you’re describing different situations to your supervisor, but you’re also, at the same time, putting in that self-advocacy and letting them know that the challenge doesn’t have to be a challenge. It can actually be a strength if you go about it the right way.

Stephen Shore: I think that’s very important. Then the third step would be to engage in what I call non-judgemental comparison to other people: “You notice that I might be really good with mathematics, ands Valerie is really good with her writing. We have her writing out advertising text, and she does a great job with that.” Calling out other people’s strengths. Maybe not so much their challenges, ’cause it’s, again, non-judgemental and non-competitive in nature.

The whole notion behind this third step is to bring about the idea that different people have different strengths and different challenges. No one’s really better than anybody else, but we all try to focus on our strengths in order to be successful.

The fourth step would actually be to bring up the label. That might be preceeded by talking about scientists and doctors who study people’s characteristics. I might even have a few characteristic sets that we might notice in people. For example: “People who have red hair tend to have freckles and fair skin, and might easily get sunburnt. It just so happens to be that a set of characteristics I have lines up with what is known as Asperger Syndrome.” So I think if it’s done right, the disclosure of the label is the last piece of the puzzle. It becomes a bit of an “aha!” moment: “Oh, so that’s what it is!”

Sharon daVanport: Do you have some advice for some of our listeners who have followed pretty much along that same line, and they’ve ended up eventually disclosing? What do you suggest they do if they run into some difficulty, where someone says: “Well, Asperger’s isn’t even recognized as something we have to accommodate, and you didn’t tell us initially anyway, so we’re not even going to consider what you’ve said”? How would someone go about that at that point? I really don’t know what to tell them when they ask me that.

Stephen Shore: That becomes really hard when someone is unwilling to make an accommodation, or recognize that a challenge or a disability exists. I think at this point, it may be necessary to consult an advocate or a person who’s aware of legal issues and what can be provided under the Americans with Disabilities Act.

Of course, if you go into a job and you should’ve disclosed and you haven’t, then that’s a problem, because you didn’t provide full information to the employer. If, on the other hand, you’ve gone in where characteristics of Asperger Syndrome and autism has not been a challenge, but they become a challenge because job duties have changed or the environment has changed, then I think it’s incumbent upon the employer to look into making reasonable accommodations.

Sharon daVanport: Right. I do too, and I think it goes back to educating our communities and employers. Oftentimes, they just don’t know. They don’t understand that oftentimes it is the environment. When it changes for someone, it can affect the way someone on the spectrum responds in any given situation.

Now, let’s get to relationships. We’ve had some e-mails come in on relationships. A few people have asked: “When do you recommend and how would you go about disclosing to someone if you’re in a dating situation?” What are some examples you can give?

Stephen Shore: Sure. In dating and relationship situations, it’s probably not something that you’ll bring up, say, on the first date. You’d see if there’s some compatibility between you and the other person. If it looks like the friendship is deepening and you’re spending more time together, then it might be appropriate to disclose in a manner similar to the four-step process I described to the supervisor.

Another note about this process is that, in some situations, it’s something that can be blown down in 15 minutes. In other situations, it may take days, weeks, or months to get through just one of the steps.

Sharon daVanport: Wow. I can see that, though, I guess.

Stephen Shore: The challenge with disclosure and with advocacy is that I can provide all sorts of ideas and structures and techniques for being as successful as possible in advocacy and disclosure, but the fact remains that each situation is different. You’re also dealing with the vagaries of human reaction and human emotions, so you actually never know exactly what the outcome is going to be until you go through it.

There may be situations where you’re dating a person, you’re looking forward to having a good relationship with them, you do your disclosure, and you get the response of: “You’re not one of these people! You mean you’re Rain Man?” So that requires more education. If the education efforts fail and the result of the disclosure is that the person doesn’t want to have anything to do with you, of if it’s an employer, the employer doesn’t want to have anything to do with you, then you also have to question: Is this someone that you want to have much to do with?

Sharon daVanport: Right. It might be for the best, anyway. You wouldn’t wanna be involved to a greater extent, whether it’s with an employer or personally with someone who would be of that mindset.

Stephen Shore: Right. It serves both ends, you might say. You give the person information about yourself that’s useful and important, and also, you find out that if this is something that really turns the person off, then do you wanna be with them?

Sharon daVanport: Right. I’ve got some questions coming in from the chat room. I have someone who’s asking if you, personally, have the characteristic of not looking people in the eye. Now, when I met you personally, I didn’t notice that, but is that something that you do know, that you’ve been told?

Stephen Shore: I remember when I was younger being told to look at people in the eye, so it probably meant that I wasn’t doing it as much as most people. What I’ve done is I’ve come up with accommodations if I find eye-contact uncomfortable. That can be looking between the person’s eyes, looking at their forehead, at their ear, and so on. As far as I can tell, people don’t really notice if I’m looking around their eyes or if I’m looking really at their eyes.

What I recommend to people who have difficulty with eye-contact is to, at the very least, make sure their body is turned towards the person they’re talking to. When they’re speaking, look in their general direction. That’s a good start.

Sharon daVanport: How would you recommend someone advocating for themselves in a situation where, let’s say, I know that I struggle with that. I struggle with eye-contact, let’s say, and I don’t want someone to judge me on that. I’m gonna be in a situation where I might be expected or I might be judged by the fact that I’m not looking someone in the eye, so I want to advocate for myself. How would you suggest I do that?

Stephen Shore: Again, it depends on the situation. The advocacy effort could range from: “In order to have a good conversation, I sometimes find it difficult to look at the person and to think at the same time.” It’s as simple as that. That would probably be for a more limited situation. If it’s someone who you’re going to have more long-term contact with, then I think it’s time to figure out how to make a more extensive disclosure.

Sharon daVanport: Right. There’s not gonna be a lot of eye-gazing, or something. [Laughter]

Stephen Shore: Yeah. “This is why I find it difficult.” Just explaining things in matter-of-fact terms. I realize that eye-contact is important for most people, but for those of us on the autism spectrum, we just don’t get the information from eye-contact.

Sharon daVanport: I don’t concentrate as well. In quiet situations, personally, I don’t have difficulty with that. There are some people where I absolutely feel completely comfortable with, and it’s never been an issue. But a lot of times—especially in a busy situation, there’s a lot of distraction going on—it’s just one more distraction to look at them in the eye: to see their eyes blinking, to see their mouth moving. I really can’t concentrate on what they’re saying sometimes. I don’t know if it’s the same for everyone, but that seems to be my situation.

Stephen Shore: I think, to some extent, it is to greater and lesser extents for those of us on the spectrum. Many of us tend towards what is known as being monochannel. So we’re able to run one or maybe two of the senses at once. But if you get more than that or there’s a lot of data coming through one of the senses, then it can be hard to manage the others. Often eye-contact is the first one to go.

Sharon daVanport: The first thing to go. [Laughter] Right.

Stephen Shore: Explaining it the way that you just did in some situations can be very helpful.

Sharon daVanport: Another question for you, Stephen: Are you overly organized, or overly disorganized?

Stephen Shore: It’s hard to say, ’cause I think I reach both extremes. Sometimes my environment is a total disaster area, because I can’t figure out what to organize first.

Sharon daVanport: I’ve done that! You feel stuck. You just look at it like: “Where do I begin?” That executive function kind of—?

Stephen Shore: Yeah, the executive functioning thing. And then other things, such as inside my computer, all the files and folders are nicely lined up and organized. Sometimes the desktop itself looks a little bit messy, but I now where to root inside the computer to find things. I like to think that I’m organized as a teacher, as a professor, when I present myself in front of the class and talk about whatever needs to be talked about that day.

Sharon daVanport: Do you find that there are specific things you can do, certain things you can do to make for sure that you stay on task? This is a huge ongoing conversation going on over in our forum right now at the Autism Women’s Network. We see a lot of people asking this question about organization and different tips.

You say that if you know you’re going to address something in class that day, you make sure that you have it. Is there something that you have to do that you had to get in the habit of doing to make for sure you follow through?

Stephen Shore: Sometimes making a list helps. Sometimes breaking things down into little pieces. Sometimes I find that jumping in and doing it. For example, developing courses, that can be a little bit overwhelming. But if I just jump in, soon I get involved in the process and many hours can go by, and I have a good result. Taking pieces of it at a time, so if an entire project such as writing a doctoral dissertation seems just overwhelming, what little piece can I do now to get myself closer to the end goal?

Computers are a great help with that, especially when it comes to writing and developing material, because editing and making modifications are just so incredibly easy. You can almost start at any point and then “fill out the edges,” you might say, to complete it.

Sharon daVanport: I know we’re jumping all around here. I wanted to get back a little bit on the advocacy. I wanted to have you speak to us about when is it good to start teaching our children to self-advocate? How would you recommend that we go about doing that? I know that there’s so many different situations, but if you could just think of a couple and tell us as parents, what might be some good tips and good suggestions?

Stephen Shore: I think self-awareness is necessary for successful advocacy, because you need to know what your needs are. That starts even very, very young, when you see a child who seems to be particularly interested in something, or particularly good at doing something.

I know that at age four, for example, I started taking apart watches. I’d take apart the gears, the hands, everything—then put it all back together again. My parents noticed this skill, they made a big deal about it, and soon there were all kinds of mechanical objects to disassemble and re-assemble. In this way, they made me aware that I had a skillset in this area, which eventually was transfered to bicycle repair. It was a great way to remain employed during my college student days.

This can start as soon as you notice that a child seems interested in and is spending a lot of time in a particular area. As time goes on, especially as a child begins to notice differences from other people, I think it’s important to tell the child in a developmentally appropriate manner that they have autism or Asperger Syndrome.

Sharon daVanport: That’s an ongoing conversation. I’ve seen on different networking sites parents asking: “Do I tell my child?” Some parents are like: “No, I don’t wanna tell my child that they’ve been diagnosed with autism.” And then other parents are like: “Oh, no, you have to. It’s really important.” You’re really recommending to watch your child, and as they start going through different experiences, to go with that experience and let them know what they need to know, and eventually to just let them be aware of what it is. That they’re on the autism spectrum.

Stephen Shore: Yeah. I think that’s a good way to go about it. Actually, for me, I had kind of an atypical way of learning: my parents just used the word “autism” around the house for as long as I can remember. So when my speech started to return—say, at about age four, at age five it had pretty much normalized—I was aware that I had this thing called “autism,” ’cause we talked about it. We didn’t know much about it, but it certainly helped explain an awful lot of differences. I felt that I’ve benefitted quite a bit from knowing about being on the autism spectrum.

In most situations, there does have to be this separate, discreet, sit-down conversation, which I can provide an example of what I did for one child. You do have to talk about characteristics and challenges.

Sharon daVanport: Right. What would you recommend for parents who have children in junior high or high school, and say, they’ve known and been aware all their life about their autism. Then they get to a point to where they don’t wanna discuss it anymore. They don’t want other people to know; they don’t wanna talk about it. Have you found through your speaking engagements and travelling around the world that this is quite typical for some kids during adolescence?

Stephen Shore: Yeah. There are a number of children who just want to fit in, and don’t want to talk about autism or Asperger Syndrome. It’s perfectly their right not to talk about it if they don’t want to. It’s their choice. But I think it’s important for them to be aware enough of their own strengths and challenges that come from being on the autism spectrum, so that they have a choice to disclose or advocate if they need to.

Sharon daVanport: And it might just be a phase, too, that needing to fit in. As long as they’re aware. In my mind, that’s what seems so reasonable. It just seems logical: wanting to be accepted, not wanting to feel like they’re different. I would think that’s pretty typical for a lot of kids.

Stephen Shore: Right. I think that with continued awareness of autism and Asperger Syndrome, and as more and more people talk about it, and more and more people disclose and advocate on their own behalf, the stigma of being on the autism spectrum will reduce.

Sharon daVanport: Right. Do you have a list of “don’t”s? And what I mean by that is, we’ve talked a lot about what to do and maybe how to go about doing things, but are there some specific things that when you’re advocating for yourself that you absolutely do not wanna do? Absolute no-nos that you don’t want to go there or don’t wanna say it a certain way?

Stephen Shore: Well, it was a president who said: “Never say never,” so [unknown]

[Laughter]

One thing I think you don’t want to do is leave a hole that’s hard to fill. So one “don’t” is, when you’re advocating, you don’t want the conversation to be all about yourself and having people serve you. The mirror-image “do” is, when advocating, make sure you advocate in a way that the other person understands and sees the benefit of providing this accommodation. So I guess, when advocating, you don’t want to have it all be about you.

Sharon daVanport: Right. You don’t wanna alienate the other person. Our ultimate goal is to hope that they can see that we just wanna work with them, and make sure that the accommodations or whatever is needed is understood.

Stephen Shore: Yeah. And that can be hard, because self-advocacy is about the self and about the person doing it. But I think it’s important to understand the viewpoint and perceptions of the other person as much as possible.

Sharon daVanport: Right. Can you tell our listeners what some of your publications are, so they can read about a lot of these tips that you’re giving in detail?

Stephen Shore: Sure. These publications can be found on the website What they will find on there are four publications. My first one is Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome. In that book, I use the autobiographical format to talk about educating children with autism, sensory issues, giving music lessons to children on the autism spectrum. Then moving forward to promoting successful transition to adulthood, where I talk about meeting the challenges of employment, self-advocacy, higher education. More and more of us on the autism spectrum are going to universities, so how can we first get into university and then, second, make sure we stay there? As well as relationships.

Sharon daVanport: That is absolutely something that we want. We were talking about some upcoming shows that we’re wanting to get produced, and we do want you to come back, Stephen, and talk about that subject. That’s something that I believe we see a huge challenge in, is that preparation and making sure that someone’s ready to go to college. People on the spectrum, there’s just a huge gap there between education and employment. I think that you have some really good advice.

Stephen Shore: Thanks. Yeah. Unfortunately, the statistics from tne National Autistic Society show that only 12 percent of us on the autism spectrum are employed to our capacity.

Sharon daVanport: Isn’t that unreal?

Stephen Shore: That’s unreal, that over 80 percent of us are either under- or unemployed. Talk about deprivation to society of the benefits of the skillsets and engaging those of us on the autism spectrtum.

Sharon daVanport: Right. I think those statistics speak clearly for themselves. There’s something that absolutely can be done, and absolutely needs to be done, to the benefit of everyone—our communities. The unemployment! Like you said, only 12 percent. That’s just mind-boggling. It really is. Wow. So these are definite issues that I think are worth addressing, on a completely separate show themselves.

Do you work with students yourself? You’re a professor, correct?

Stephen Shore: That’s correct.

Sharon daVanport: When you get students yourself that are on the spectrum, are there things you do yourself to accommodate them? Are they usually pretty good about advocating for themselves? Do you encourage them to? How do you as a professor approach this?

Stephen Shore: That’s a good question. At the university, I haven’t had a student in my class yet who’s been diagnosed with Asperger Syndrome, although I have in the past. What I do for students with Asperger Syndrome is the same as I do for any student who’s exhibiting difficulty in some area. I think about how I can best accommodate for their challenge. In accommodating for whatever challenge they have, is there a way to fold that accommodation in to my teaching style, so that in fact the entire class benefits?

For example, let’s say hypothetically, a student with autism needs an advance organizer and a copy of the class notes in order to help keep them organized for class. Might it be that, perhaps I should write the schedule of today’s topics on the board or on a handout? Maybe I should just hand out copies of my entire Power Point presentation to the class as a whole. In that way, the person who has a disability or a difference isn’t singled out, and what happens is that everybody benefits from that accommodation.

Sharon daVanport: Right. I’ve noticed students on the spectrum that I have personally been involved with, they do feel much better when there’s an attitude of inclusiveness, of the teacher approaching it differently. I’ve just seen students do fabulous in those circumstances. I thnk it’s good when educators have that attitude. I was looking at your website: is that where people would also contact you for speaking engagements?

Stephen Shore: Yeah. It seems to me that’s why people most often contact me. They’ll find my other publications, too; I didn’t get to them. The second is Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum. What this book covers is the issue of: “How do we teach those of us on the autism spectrum to advocate successfully, and with advocacy, how to disclose successfully?” ‘Cause what I’ve found is that there’s very little education in this area. What I did is I got five of my colleagues—also on the autism spectrum—and I said to them: “We’ve got this need for advocacy here. How are we going to do it?”

All six of us took our separate viewpoints: I talked about teaching the skills of advocacy to a student while they’re in grade school. Another author, Kassiane Sibley, talked about six developmental phases of learning how to advocate for oneself. Roger Meyer wrote about how to successfully interface with social service agencies, and what’s proper to expect and what isn’t. Phil Schwartz, for example, talked about individual advocacy and group advocacy. These are some of the topics that are covered.

The third book is…Let’s just say I’m the dummy who wrote Understanding Autism for Dummies.

Sharon daVanport: [Laughter] I saw that. I like that, though. Very good.

Stephen Shore: The primary audience of that book is our teachers, parents and others supporting people on the autism spectrum, as well as those of us with autism. This book, you might say, has a little bit of everything, with links and resources to additional material.

Sharon daVanport: You cover things in this book I think it’s good for people to know. You cover things about financial concerns, education, family issues, adulthood. You pretty much touch on just about everything.

Stephen Shore: Yeah, yeah. A little bit of everything. I had a great experience writing that book with my coauthor Linda Rastelli. My fourth publication—and the most recent—is actually a DVD interview, called Living Along the Autism Spectrum: What Does it Mean to Have Autism or Asperger Syndrome? This is a Larry King-style type of interview with myself and Robert Naseef, who is a psychologist who has an adult son with more significant autism. He’s nonverbal and has a lot of challenges. So I talk about what it’s like to be on the autism spectrum; he talks about what it’s like to be a father of a son with autism. The person interviewing us is a psychologist who has a grandson on the autism spectrum. His name is Dr. Daniel Gottlieb.

Sharon daVanport: Okay; interesting. So this is an actual DVD where it’s in interview style. You guys are giving your own experiences? You’re just talking about your personal experience?

Stephen Shore: Yeah, exactly. We talk about autism and sensory issues; autism and acceptance in the family, and challenges that the family faces. We talk about autism and emotions. We cover quite a bit of ground.

Sharon daVanport: Wow. And all these are available…people can gain access through your website. Is that correct?

Stephen Shore: Sure, yeah. They’re all on my website. All of the publications except for Understanding Autism for Dummies were published by Autism Asperger Publishing Company, which I feel is the leading resource on things related to autism and Asperger Syndrome.

Sharon daVanport: I agree; I do, too. I’m just trying to think if there’s anything that we’ve left out. Is there anything else that you’d like to add before we start wrapping things up? I know that we are definitely gonna have to have you back to talk about a few other things, too, like I mentioned earlier.

Stephen Shore: It’s better to return. I think the thing to add is that I think we’re reaching a new era of understanding, acceptance, and awareness of autism and Asperger Syndrome. We’re beginning to get to a point where employers, for example, are seeking out people on the autism spectrum, because they understand what we’re able to contribute.

For example, the university where I teach—Adelphi University, on Long Island in New York City—they actually approached me and were aware that I have Asperger Syndrome. I think that was part of their decision to hire me.

Sharon daVanport: That’s encouraging, to know that and to hear that, Stephen. I think so many of us, when we hear the statsitics like only 12 percent of us on the spectrum are employed, it gets discouraging. To know and to hear that times are changing, people are more aware of what people on the spectrum can contribute. The more we can advocate, and advocate correctly, and just make our communities aware, I think we’re gonna see even a bigger change in the future.

Stephen Shore: Oh, I think we will; I look forward to that.

Sharon daVanport: I definitely do look forward to things changing in that way. I think with things changing and the autism community being more outspoken, it falls upon us to be responsible with the information that we have. I think that it is incumbent upon us to take that opportunity that we now have to be out there on the internet and in different networking sites, and to be responsible about it. So I appreciate the work you do and the information that you share with all of us, so that we can fine-tune the things that we say, so that we get it across in a way that will benefit everyone.

Stephen Shore: Likewise, I appreciate the work you’re doing in making people more aware of autism and Asperger Syndrome.

Sharon daVanport: Well, thank you very much. I’m just gonna say one more time: Your website is www.autismasperger.net. Do you have any speaking engagements coming up in the US or overseas in the next month that you wanna let everyone know about real quick?

Stephen Shore: Oh, sure, yeah. Upcoming speaking engagements include the Yankee Dental Congress in Massachussets on the 28th of January. I think that dentists also need to know about autism and Asperger Syndrome, especially given all the sensory violations that go along with dentistry. In February, I’ve got two trips to California—one to Annaheim and one to Bakersfield—to do presentations. Then at the end of the month, I have a presentation in Alabama. Then that brings us to March, where there’s presentations in Selma, Massachussets, one in Tennessee. In April there will be presentations in Texas, Long Island, British Columbia, and northeast Indiana. And it just goes on and on.

Sharon daVanport: My goodness! Very busy that you are! It’s amazing. Our sponsor for AWN Radio is b-Calm Sound, and we do prize giveaways. We take down names for everyone who shows up in the chat room. At the end of the month, they do prize giveaways. It’s really interesting, because they actually started their technology and their Audio Sedation with dentistry in mind: children and adults having sensory issues at the dental office. It’s been a really great intervention for people. We’re just glad that they are our sponsor, because it fits in really nicely with sensory issues here.

I have one last question from the chat room before we sign off here. They’re wanting to know if you have ever looked into the cause of autism yourself.

Stephen Shore: I am very curious about the cause of autism, and I think the researchers are probably onto something that it starts with a genetic predisposition—which speaks towards autistic characteristics running in families—but then gets triggered by something else. It’s all those “something elses” that we don’t really have a good grasp on. We’ve got an awful lot of clues. Some people are looking at the potential role of vaccines, toxins in the environment, food, allergies, maybe even a virus. But there’s no conclusive evidence as to the causes of autism. I would say, along with research into the causes of autism, I’d like to think the focus will be on how to help people on the autism spectrum.

Sharon daVanport: Look for solutions. Yeah.

Stephen Shore: Looking at some of the increases and solutions, and getting away from some of the talk that I hear in terms of cure or elimination of autism.

Sharon daVanport: Right. I just think that for the people who can advocate for ourselves and are very well-aware of who we are, when you talk about things like that, the first thing that pops into someone’s mind is: “Are you wanting to do away with me?” There are just so many ways someone could take issue with some of the things.

But I think a lot of these discussions are worth having. I just hate to see that, even within our own autism community, the way that there’s so much battling. It really disturbs me. I wish we could focus more on the supports and solutions, and how to make sure that people on the spectrum are successful, and there’s an inclusive environment within our communities and schools. There’s always gonna be that topic of: “What’s the cause?” or “Is there a cause?” But I think that if we could just understand that, we shouldn’t let it divide our community, because we’re not gonna get as much done. I hate to see that; I do.

Stephen Shore: I think by working together, it’s almost everybody’s goal to have their children with autism or the people with autism they support, and those of us on the autism spectrum as well, to lead as fulfilling and productive lives as possible, by using our strengths like everybody else. We should employ intervention in the biomedical, educational and sensory integration realms to do the best we can to make this happen.

Sharon daVanport: That’s right. Well, Stephen, I really appreciate you spending the last hour with us here on AWN Radio and coming on and talking about so many different things. We didn’t just stay on self-advocacy, so I appreciate that you took questions from the chat room and were able to address a few other topics. I’ll definitely be in touch, to make sure that we get a show produced where you can come back on and talk about some employment issues. I’d appreciate that.

Stephen Shore: Oh, that’ll be great.

Sharon daVanport: You have a good day. We’ll be in touch, all right?

Stephen Shore: Good, thanks, and you too.

Sharon daVanport: Thanks, Stephen. Bye-bye.

Stephen Shore: Bye-bye.

Sharon daVanport: Okay, everyone. That’s gonna do it for us today on AWN Radio. Just wanna remind everyone that we will be back next week. Our guest next week is Liane Holliday-Willey; Liane is going to be with us to discuss the vulnerabilities of females on the autism spectrum. Liane has decided that she wants to go ahead and address personal issues herself that she has expefrienced in her lifetime, with some issues towards her own vulnerabilities, when it comes to violence and abuse and different issues that she has personally witnessed with other people and herself.

Hope that you can join us. We are gonna be just an hour off next week than usual. We usually do it 10:00 AM Central/11:00 AM Eastern. We’re going to be live at noon Eastern on the 29th, which will make it 11:00 AM Central. We hope that you will be able to join us in welcoming Liane, and having a good discussion with her about these issues with females on the spectrum.

That’s gonna do it for us. We will talk to you next week. Everyone have a wonderful weekend. Bye.

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: