Autism Advocate Stephen Shore | EXPLORING DIFFERENT BRAINS – Episode 07


 

In this episode, Hackie Reitman, M.D. speaks with author and autism advocate Stephen Shore. Stephen was diagnosed as non-verbal and autistic at the age of 4, when doctors suggested his parents institutionalize him. Since then he has gone on an amazing journey that has led him to speaking on behalf of autism and neurodiversity in 49 countries and all but one continent. Stephen, now a professor at Adelphi University and a board member for Autism Speaks, discusses his inspiring story, his work as an author, and how he uses music to teach people on the autism spectrum.

For more information about the work of Stephen Shore, please visit his website www.AutismAsperger.net

And visit his facebook page www.facebook.com/tumbalaika

 

31 Second Preview:

 

To listen or download the podcast version of this episode, see the embedded player below.

Or look for us on your favorite podcast provider:

iTunes | Stitcher | SoundCloud

 

View Full Transcript
HACKIE REITMAN (HR)

Hi, this is Dr. Hackie Reitman with another episode of Exploring Different Brains, and I have a real fun different brain to explore today: Stephen Shore, who’s one of my idols in the neurodiversity world, who I had the pleasure of meeting out at the World Autism Conference in Tucson, Arizona. Stephen Shore, welcome!

STEPHEN SHORE (SS)

It’s great to be here. Good to see you again.

HR

Well, nice to see you again too. Why don’t you tell our audience who you are and what you’re doing?

SS

Alright, well I spend–I divide my time between teaching courses on mostly autism here, at Adelphi University, as a professor doing research in the area, you know, writing books on–and articles on autism related issues, and traveling around the world, talking about autism and giving music lessons to children on the autism spectrum.

HR

Well, I remember when I had the real privilege of hanging out by the authors table with you and Temple Grandin and some of the other folks out there, and I would like you to tell the audience about how you were diagnosed, what you were diagnosed with and what’s gone on?

SS

Yeah, certainly, I’d be glad to. Well, after 18 months of typical development, I got hit with, what I call, the autism bomb. Otherwise known as regressive autism. So I lost functional communication, had meltdowns, withdrew from the environment, and, in short, became a pretty significantly effected child on the autism spectrum. There was so little known about autism then that it took my parents a whole year to find a place for diagnosis. And, when they did, now I’m 2 and a half and it’s 1964, the doctors said that they had never seen a child who was so sick. And they recommended institutionalization. Fortunately, my parents, like we see so many parents today, they advocated on my behalf and they convinced the school to take me in about a year. And it was during that year that my parents implemented what we would, today, refer to as, an “Intensive Home-Based Early Intervention Program,” emphasizing music, movement, self-reintegration, narration and imitation. And that’s just today’s terminology. In those days, the concept of early intervention didn’t even exist. And with the work that they did, speech began to return at age 4, when I was then admitted to the school that initially rejected me. I got reevalutated, instead of being considered as having strong autistic tendencies, and atypical development, and being a psychotic child, I got upgraded to neurotic, so things are moving up in the world.

HR

Well, I’m glad you’re neurotic, Steve. Join the club.

SS

Yeah, well, it’s more fun.

HR

Well, you’re certainly an inspiration to so many of the individuals watching and listening in who, themselves might be neurodiverse, or be a parent of neurodiverse or a teacher or a concerned third-party, you’re now on the board of Autism Speaks, and that was kind of a big, big, big deal. Tell us why that was a big deal? Not that you’re egotistical and you say it’s a big deal, it’s people like me saying it’s a big deal.

SS

Well, I think it’s a big deal for the organization, and the reason why is that, you know, when Autism Speaks came onto the scene, there seemed to be an awful lot of focus on cure, prevention and things that got a lot of us in the autism community upset. And, in some ways, it almost seemed like maybe they were like parents of a child who was just diagnosed with autism. And the parents said, once they get over the denial, you know, I’m going to be the one to figure this out. I’m going to get as much research done as possible. No one else has done it, but I’m going to cure my kid of this horrible thing. Well then, as time goes on–you know, as the child ages into adolescence, the parents start to realize that this autism thing is here to stay, and maybe it isn’t so bad. And there are things that can be done, to work with the autism. And that was something that I was seeing Autism Speaks doing for quite some time, whether it was the toolkits, I guess their first one was the 100 day toolkit, and now they’ve got toolkits on higher education, employment, transition to adulthood, they’ve either got one out or are about to have one out about relationships and sexuality for people with autism, and that suggests to me that they realize that autism is something to be worked with. And that maybe what the people who were talking about cure are really saying, is that thy want to reduce the suffering of the people they know with autism, or the children with autism. And I think that’s a point where we can all agree on, is that we want to reduce suffering, and we want to promote fulfilling and productive lives.

HR

Very well said, Stephen, very well said. What we’re trying to do on our newest website, DifferentBrains.com, is to get everyone to place nicely in the sandbox and get along with each other in these various, what I call neurodiversity camps, where I’m taking more of the “Rodney King” approach of, why can’t we all get along? Why don’t we all get along so that the vaccine people will speak nicely with the genetics people, will speak nicely with those of us who want to see the resources made and available, and an over all gestalt that recognizes that all of our brains are different, it’s not a bad thing, it’s just a different thing, and how do we best get every individual to be able to thrive and achieve maximum productivity and maximum independence with the gifts that God gave them.

SS

Yeah, I wholeheartedly agree, and it makes life much more interesting, it makes the world more interesting when you have people with differences. And I think it may be better to look at autism as an expression of the diversity of the human gene pool. Now, that said, autism does bring significant challenges. And if it didn’t, we wouldn’t be all here trying to figure it out. So we do have to help the people on the spectrum who have debilitating characterstics, such as sensory issues so great, they can’t bear to remain in their skin, people who haven’t developed a reliable means of communication, we got to help these people. And people who have certain biomedical issues, they’re definitely there, and we can do something about it. And we need to.

HR

Well, I agree 100%. Now I’m going to be speaking at Lynn University this Friday at the 2016 Transitions Course, I’m giving two workshops, and I figured I would pick your brain, because my two workshops are on Transitions, going to college for someone whose brain is a bit different, and also the team-approach when one is going off to college. And I know those are a select group, but what advice would you have for these individuals I could pass on to them, from the great Stephen Shore?

SS

Well, that the potential of people with autism is like with everybody else. It’s unlimited, and what we need to do is to help people on the autism spectrum reach that potential. And if you’re looking at the college level and people with autism going to college, that support is vital. As I’ve seen situations where someone had entered Adelphi University after flunking out of two universities beforehand, now he’s getting the support and he was getting a 4.0.

HR

Wow. And tell me some of the team members for that–for a college students support?

SS

Well, the program at Adelphi is called Bridges to Adelphi and it’s run by Mitch Negler, who basically manages the program with about 120 students, and we could have double that if we had the room. And these students received support through individual mentors and through group meetings, on subjects such as getting around our campus, social interaction, how to manage a schedule, how to talk to your professor when you have a question, and all of these executive function things that, you know, so challenging to many of us on the autism spectrum.

HR

Well, and–you know, we see it at every point of transition, whether it’s from middle school to high school, and high school to college; certainly to me–where the rubber really meets the road is with employment. What are your feelings about some of the initiatives toward employment nowadays?

SS

Well, it’s very exciting. I’m seeing a lot of work being done in the area of IT, that said, it’s important to keep in mind that, while many of us on the spectrum are IT geeks, it’s certainly not all of us. And I don’t even think it’s a majority of us. But it’s a–it’s a big number, and in the IT world, we have organizations such as Special Estern, that has a goal of 1 million jobs for people with autism in IT teaming up with companies such as SAP, Microsoft and others to hire people on the spectrum. And the way they are doing it, is they are presenting those of us on the spectrum who have such skills in IT as people to hire because it’s a good business decision. It’s not a charity, but you’re hiring someone who can do things faster and better than many other people can. And, as a matter of fact, just yesterday I came back from Russia, giving workshops on autism and talking to governmental officials, and, when I learned that there was a branch of SAP in Moscow, I set up a meeting with them and they’re interested in bringing on people who have autism into their company, or into their office as well.

HR

If you could give advice to a neurodiverse adult individual watching or listening, who’s trying to become independent, what is the one thing you would emphasize to that individual themselves, and I know I’m throwing a lot of different individuals together with that question.

SS

Well, I think, in general, it’s vital that you find your strength. What are you good at? What do you like to do? And things that people like to do, tend to be things that people are good at, so I often ask the question, what do you do with most of your time? Or what do–if the people let you do it? And that leads to strengths, and interests, and from there, the question is how do we match this interest to possible career opportunities. Sometimes there is a direct match and you can go right in, sometimes you have to do a little bit of shaping and modification of the interest to get something that’s close to the interest and still has many of the aspects of what that person is interested in.

HR

Well, you know–and I have that chapter in my Aspertools book about harnessing the hyper interests, and it amazes me so many times when I talk to well-intentioned parents, and I make fun of myself as a parent. As you know, I–you know I made that move the Square Root of 2 inspired by a true story about my daughter, and her college experiences.

SS

Oh yeah, I downloaded that movie it was good.

HR

Oh! Thank you very much, and, you know, I–my lectures, I take scenes from that movie that make fun of this clueless dad in the movie, who’s me, who did not have a clue that his daughter’s senses were hyper, what her interests really really were, how her brain was working. All of these things now that are chapters in the Aspertools book, and when I get so inspired seeing people like yourself speaking as I did out in Tucson, Arizona, and see how you connect with the individuals and are able to get by, with the parents especially, I noticed, get by that wall of a combination with us parents of I call it a combination of denial, ignorance, everything’s going to be okay and outstanding love for your child, how you get through that. It amazes me, for instance, many times when I ask a parent, “So, what is your child interested in?” They look like a deer in headlights. They don’t know.

SS

Right. And it really just requires observing and just asking a person with autism.

HR

Yeah. Many times they don’t get asked. And, you know, I think that in addition to identifying the strengths, one of the things that really has hit home for me, that I’ve learned from other individuals, such as yourself, is connecting with the individual, rather than immediately saying, “Stop this behavior, stop that behavior.” Like you said, focus on the positive. What do you like and connect at that point?

SS

Right. And what it is, is it’s a matter of transitioning from, what I call, the deficit model of autism, you know, so much focus on what can’t be done, towards an ability-spaced model, so we need to really be asking the question, what can that person with autism do? And then work from there.

HR

Now, can you please tell our audience, Stephen, some of the Stephen Shore books and media and things out there, and where they can find all about you and learn from you?

SS

Oh, sure. Well, the best place to go is–actually there’s three places to go–one is my website, which is www.AutismAsperger.net and so that’s my website and I’ve got a number of videos on there. You can also go to my Facebook page and see pretty much what I’m doing at any given time–which country I’m in or where I’m traveling. People can also go to my LinkedIn page, for additional information. And then, finally, if you forget all of those, if you just type in my name Stephen Shore and the word autism, then all of that will come up in a google search.

HR

Well that’s great, and tell us the names of some of your books?

SS

Oh, yes, we’ve got to get to that. My first book is “Beyond the Wall: Personal Experiences With Autism and Asperger’s Syndrome,” and I used that book–that book uses the autobiographical structure, in which to talk about sensory issues, could be music lessons to children with autism, educational accommodations, as well as the all-important successful navigation of transition to adulthood, in the area of relationships, education, employment and community living. Other books include “Ask and Tell: Self Advocacy and Disclosure for People on the Autism Spectrum.” And it pretty much–the title pretty much explains it, it’s a book written for and by people with autism. It’s a series of chapters addressing the question, how can we best teach those on the spectrum to successfully advocate for our needs. The next book is “Understanding Autism for Dummies,” it’s part of the four Dummies’ series, and what that does is it’s a great resource for parent educators and others who want a good introduction to autism with leads to go deeper into any particular area that that person is interested in. I also have a dvd, it’s kind of like a Larry King style type of interview that–where I talk about what life is like with autism, Robert Naseef is the father who has an adult son on the spectrum, who is much more significantly effected and lives in a group home and were also–were also interviewed by Dan Gotleid, who is a psychologist and has a grandson with autism. So, looking at autism through three different ways. Finally, my latest book that I co-wrote with a colleague of mine, here at the University, Dr. Povin John Antony, and the title is, “College for Students with Disabilities, We Do Belong,” and this book is a mix of personal stories and latest research in supporting people with disabilities in higher education. And there’s a number of chapters written by people with autism as well. So that’s–I think that kind of covers it.

HR

Wow, well that’s breathtaking. Now another thing, Stephen Shore, unlike Hackie Reitman, you travel all over the place. How many continents and countries and states have you been to?

SS

Well, I’ve been to–there’s only four states left in the United States for me to get to, Montana, Idaho, Wyoming and Mississippi. I’ve presented in 40 countries across six continents, so there’s only 155 countries left to get to, and there’s only one more continent to get to.

HR

Which is the missing continent?

SS

Well, it’s the one way down south. It’s the South Pole. And I think that–I think there’s a very high incidence of autism in penguins that live there–because, if you look at them, they–you know, they do a lot of flapping, they walk in circles, they seem to be hypo sensitive to cold, they engage in repetitive tasks–so I think the penguins also need to learn more as well.

HR

How did you find the overall attitude in Russia?

SS

That’s very interesting. I’m finding that Russia, like many other countries, such as India and China, have written special education laws that look very much like the ones we have in the US–and they look very good. Sometimes they’re even better. And that occurred due to the United Nations recent convention on the rights of people with disabilities, which includes education as a right. And, as a result, we’ve got this great legislation, however, these countries are challenged in implementing this legislation. And that’s where we come in.

HR

Now, when you say they’re challenged in implementing, do you mean the will to implement or the means?

SS

I think it’s more the means; in other words, they don’t have the 50 or so years of experience that we have in the United States, in implementing special ed. We still have a long, long way to go. And what’s encouraging is that these countries are reaching out to other countries that have this experience, and helping them figure out how to support students with disabilities. So, in Russia, there’s beginning to be worked on in supporting people with Asperger’s Syndrome, there’s a very new organization called Asperger Syndrome Support Network of Russia, and, for now I’m acting as their president, and I think the first thing I need to do as the president is to find someone who lives in Russia to run the organization because it’s better if it’s run locally. There’s an organization called Our Sunny World, which is receiving a lot of attention and a lot of requests from other areas of Russia to set up programs. So it’s a little bit like the Wild, Wild West of autism there.

HR

You know, I noticed that your website name is AutismAsperger.net, which, of course leads me to the question as to where do you stand, if anywhere, on the Asperger’s as a stand-alone versus Asperger’s is autism spectrum?

SS

Well, I think of Asperger Syndrome as part of the autism spectrum because there’s so many characteristics, and I think we’re challenged by separating out Asperger Syndrome–well, when we eliminated–when Asperger Syndrome was eliminated in favor of social communication disorder, it might cause some confusion, at least at the beginning, because people aren’t sure what to do with the diagnosis, “social communication disorder.” So you’re seeing a lot of diagnoses and a lot of literature being written as–with social communication disorder, and then in parentheses, or as a subtitle, formerly diagnosed as Asperger Syndrome.

HR

Very good answer, I think you might be running for president soon. That was a good answer. You avoided any mine fields with that one, huh?

SS

Well, there’s a lot of strong opinions.

HR

That’s for sure. How did you begin writing, Stephen?

SS

Well, I began writing when, after giving a presentation, I think for a second time, with–or I should say before–Arnold Miller–who developed the Miller Method; He would hold these intensive Miller Method practitional workshops, and I’d come in and give him and autobiographical presentation, and he said to me, “You know, you have a story, and you should write a book.” And I told him don’t be ridiculous, it’s so hard to get published and I don’t know if anybody would want to read it anyways. And he kept cajoling me and, finally said, “Well, if nobody publishes the book, I’ll publish the book.” And so he, essentially, was the first editor. And I wrote the book with him editing along the way, and I sent out about 12 proposals to various publishers, and one of them responded with–positive, and that was AAPC Publications, and that’s where it all started.

HR

How and when did you decided that you wanted to make a big difference in the neurodiversity world?

SS

When I began to realize that I was so extremely fortunate to receive the early intervention that my parents provided for me, and that I want to combine my personal experience with education, educational and practical experience to help people with autism lead as fulfilling and productive lives as possible.

HR

Well you see–I find myself gravitating more toward, like in the Aspertools book, trying to give real tools you can really use as opposed to scientific theory and dogma and so on and so forth–like what do you really do in this situation? And I find that your approach is very similar to that.

SS

Yeah, well I think it’s important to be practical and to give practical advice that’s easy to follow, and to implement.

HR

You know, we’re talking here with Stephen Shore, who was non-verbal, autistic, still is autistic, and some of the other descriptions given back then–how were you described when your parents were being told you should be institutionalized?

SS

Well, the doctors said they’d never seen a child who was so sick, and my parents had two other children and a marriage to get going and to keep intact, and maybe we would just be better off to send the child to an institution where they knew better to take care of these different children.

HR

And naturally, we’re all so happy to your parents that they began the early intervention, home-program which could have a million different fancy labels nowadays, but back then it was good old common sense.

SS

Yeah, that’s really what it was.

HR

Yup. What’s on your agenda for the future that might be different? I mean you’ve written many books, you’re speaking, literally, all over the world, you’re inspiring people all over the world as you’ve inspired people like me, out in Tucson, Arizona at the World Autism Conference. What’s on your plate going forward and what will you be doing any differently?

SS

Well, I think I’m going to continue what I’m doing, and maybe speaking at more places and I don’t know, maybe my next conference will be at Mars, because there must be martians that have autism as well.

HR

And I neglected to ask you about one of your very favorite things–and your interests in music. Could you elaborate on that?

SS

Oh, sure. Part of my early intervention, my parents had music going on in the house all the time. We’d move to music, sing to music, do everything to music–so I think that’s what spurred my interest in music. And, now, to such a point where I got a bachelor’s and a master’s degree in music, and most of a doctorate before I defected to special education. And now what I do is I give music lessons to children who have autism. And as a matter of fact I’m giving one later this afternoon. And I do that, because in addition to all of the therapeutic benefits of engaging in music, you’re also providing a real life skill to them, which to develop interactions with others as a musician. And, also music’s just plain old fun, and, finally, I haven’t figured out how to teach typical kids yet, so I just stick with the ones on the spectrum.

HR

Once again, we’ve been talking with Stephen Shore, who’s been an inspirational leader in the field of autism, neurodiversity, is now on the board of Autism Speaks, professor at Adelphi, doing so much for so many in so many different ways, and you can get in touch with Stephen through his website, www.AutismAsperger.net. He’s got a lot of books out there if you just google “Stephen Shore Autism,” a bunch of stuff will come up and you’ll be able to look at his videos; you’ll see all about him, you’ll find his books, his lectures, and no matter what country or continent you’re on, he’s going to be coming there soon.

SS

There you go.

HR

All right, Stephen, great to see you again; I look forward to seeing you in person soon, you getting down to Florida sometime soon?

SS

There aren’t any plans at this moment to come to Florida, but if you know of a conference wanting to hear a person with autism speak, let me know and I’ll come right down.

HR

All right. Well we may have to make our own down here and get you down here, I think we’ve got to do that.

SS

That sounds good to me.

HR

Stephen Shore, thank you very much. We appreciate it. Keep up the great work you do for so many people.

SS

Thanks, my pleasure, and likewise for you as well.

HR

We’ve been talking with Stephen Shore–You can get in touch with Stephen through his website, www.AutismAsperger.net.

 

 

2 thoughts on “Autism Advocate Stephen Shore | EXPLORING DIFFERENT BRAINS – Episode 07

  • Author Image
    February 3, 2016 at 10:33 pm
    Permalink

    What stands out to me is, that Stephen regressed at 18 months in 1963. The measles vaccine was introduced that very year. And ever since, it is common for children to regress right after getting the measles vaccine (now a three-in-one vaccine, the MMR). The MMR inserts lists encephalitis and meningitis as two of the ‘side effects’ of this vaccine. Which is brain inflammation, leading to brain damage.

    Some children are born with autism. But this is rare. Most regress after vaccines. Meaning, this autism is really brain damage.

    I am NOT somebody uninformed. I myself have Asperger Syndrome, finally diagnosed at the age of 52, which explained my very difficult life until then. I am now almost 63 years old, and I am doing okay. At least now I know I am not just ‘crazy’, or ‘weird’, but autistic.

    Was I born this way? I don’t think so. Apparently, my personality changed after getting the smallpox vaccine at the age of two. I was outgoing with a sunny personality before the vaccine. I looked healthy, chubby, rosy-cheeked before the vaccine. After the vaccine I became sickly, moody, asocial, and I haven’t been well a day of my life since.

    Just something to ponder here. Most of the time autism is brain damage, caused commonly by vaccines or other poisons in the environment, in susceptible people.

    In my family my father was obviously an aspie, and so are my sister and at least three of my six brothers. BUT in Germany the smallpox vaccine was still mandatory when my siblings and I were little, and was already mandatory when my father was a child (he was born in 1923). The susceptibility was inherited, but the autism (brain damage) was triggered by the smallpox vaccine.

    That is my opinion, after doing 24 years of intense research on the subject (and yes, when I research, I go all out, which is what aspies do).

    Reply
  • Pingback: DEFINING NEURODIVERSITY FOR 2017: IT’S DIFFERENT BRAINS - DIFFERENT BRAINS

Leave a Reply

Your email address will not be published. Required fields are marked *