Wednesday, November 9, 2011

Stephen Shore: The TPGA Interview

Stephen Shore is noted for his tireless, globetrotting autism advocacy and education work. He is also such a busy and accomplished individual that he doesn't always mention roles like being a public member of the U.S. IACC (Interagency Autism Coordinating Committee). TPGA editor Shannon Rosa had the pleasure of talking with Stephen two weeks ago.

You do so many different things that people aren't always aware of everything you do. Can you tell us about yourself, in terms of your various pursuits?

I do a lot of teaching and researching at Adelphi University on issues related to the autism spectrum; specifically teaching courses on autism: an intro course, and a more second-level course called "Diagnosis and Intervention in Autism," in which we go deeper into different approaches and techniques. I also teach an intro to Special Education and a master's course in which students are expected to piece together everything they've learned.

My research and writing focuses on comparing different approaches to working with children on the autism spectrum, with the goal of matching practice to the needs of children, as opposed to proving which one is the best. And I don't find anyone else doing that.

An intuitive approach?

Yes. But I'd like to see if there's a way to make it more objective. We know that the best clinicians are doing that, they are matching approaches to needs -- and is that something that can be made part of an assessment, so we can adjust what approach a child might benefit from. There's huge diversity in the autism spectrum, almost too much diversity for its own good. If we can find a way to subtype in a meaningful way we'd be much better off.

And that's one of the problems of the upcoming DSM-V changes [to autism diagnostic criteria], that all the subtyping will be taken away. At this point, even as imperfect as [the DSM-IV criteria] is, an educator or clinician who is told they're going to have a new child with Asperger's in their class or on their caseload can start thinking of certain possible challenges that person might have, and what might be good to use as a technique or an intervention; whereas if someone is told they're getting a child with autism, that might tend to lead them towards other interventions. But now all that's gone. The good news is that it will force really looking at people as individuals.

As for the conferences, I do maybe 70 to 100 presentations per year -- I can do two to four presentations per conference. I do presentations and workshops and consulting about autism around the world, I've been to 27 countries so far, six continents and 45 states. Not Antarctica yet, but I do think there is a high incidence of autism amongst penguins -- they flap a lot, they walk in circles, they seem to have hyposensitivity to cold.

The third thing I do is writing about autism and issues related to autism, books, book chapters, articles, newsletters.

Then there's the fourth thing, which is giving music lessons to children on the autism spectrum.

That's a lot of doing! How do you get this all done?

I just do it. I sleep a lot on airplanes as I'm traveling from one place to another.

And you're married as well?

Yes. I've been married for 21 years.

I love hearing about all the things you do, as it proves so beautifully that there's no one way to live a happy, fulfilling life.

I have a good time doing all this stuff!

For those who like to play "Where in the World is Stephen Shore," where are you going next?

Well, next week I'll be out in Seattle, speaking at the US Autism & Asperger Association, the week after that I have conferences in Maryland, Virginia, and a couple in Philadelphia; the week after that is a big conference out in Columbus, and then another one out in Boston. As for international conferences, starting in December I have one in India, in February there'll be one in Bangkok and another one in India as well as in Dubai, and then in March there'll be another one in Bangkok.

You said that you really enjoyed these conferences because of the work that you do and also because of the sensory input from air travel -- specifically takeoffs and turbulence -- but is speaking work actually able to contribute to your income, or do you do it mostly as an advocate?

It's kind of both. It does contribute to my income to some extent, and on my own I wouldn't be able to afford to travel as much as I do; I suppose if I didn't feel so strongly about advocating I could find something else closer to home and make more money doing it. It's not a way to get rich, it's not even a way to earn a living -- but it can be helpful. And I talk to a number of younger people who are on the autism spectrum who kind of get enamored of the idea of traveling around doing presentations -- which is a perfectly fine thing to do, but is not a realistic thing to do as a career. I think it's important for them to know that.

I've heard from other folks on the spectrum who did start speaking at conferences that eventually their sensory needs weren't compatible.

Yes, sensory issues are difficult.

In terms of your advocacy work, is this something that was a natural evolution for you, or was there an event that made you think, "I need to get out there and do this work"?

I guess it's one of those deals where you get both. All the presentations I do, they just kind of grew. I don't advertise or market beyond just having a website that people find (www.autismasperger.net). Occasionally if there's something that's compelling or some place I want to go, I might walk up to the conference organizer and tell them that they should have me present at their conference, but that's about as far as it goes. I know that there are some people who are actively marketing, and it's perfectly fine to do that, but word of mouth seems to work best.

In terms of getting into advocacy, it seemed like there wasn't anything being done about it. It's a dirty job but John Wayne wasn't available, so I had to do it.

Can you tell us about situations in which you've had to really assert yourself, really self-advocate?

Yeah, I did do that in France one time. It was suggested that I contact the organizer of a parent group there about a presentation. She said she'd be happy to have me, but expected me to pay all the expenses. So I told her, "I won't do that." Then about six months later, my wife was haranguing me about going to Paris for a vacation. So I thought, "Well, OK, I'm going to be there anyways, so I'll let [the organizer] know I'm going to be there anyways, and I'll be glad to do a presentation." But then after I got there, the organizer said that I could take the subway. My response was that I wasn't going to do that, number one because of sensory issues; also not knowing French, I didn't want to get lost underground. And if it was impossible to provide transportation then perhaps we could do this another time. So, she did come out and get me. Sometimes you just have to advocate for yourself.

I also did it for another presentation, where they wanted two of us to arrive at the airport at the same time so we could take a car in together. My contact suggested a morning flight, and being a good boy I did get a morning flight. Then a couple of days beforehand she told me that the other person was arriving four or five hours after me, and that I'd have to wait at the airport. And given that that particular airport was BWI [Baltimore Washington International], I said that maybe another time would be better. So then they sent two cars.

When it comes to travel, sometimes if you don't self-advocate you can have a really miserable time. You have to advocate for what's appropriate. There are certain things that should be done for speakers at a conference. I don't ask for that much, but I don't want to have a weird itinerary where there's a huge layover or something like that.

I really enjoyed your presentation at the Morgan Autism Center conference. I appreciated the autism simulation you did in having the audience try to speak without using words that the letter N in them. I also really liked the demonstration you did at my house with TPGA editor Jennifer Byde Myers, about sensory overload. How did you come up with those ideas?

I got them from somewhere else! There's a lot of material out there. You can find some of it on the Internet and some of it in teachers' supplementary materials in books, and sometimes just seeing other people do stuff. The speaking without Ns comes from Richard Lavoie, he has a number of activities that artificially induce disabilities in participants. So I just took one of his activities and customized it to being related to autism.


The sensory one, I read about it online, in a resource for simulating various disabilities [example -Eds] -- so I grabbed onto that one.

I also enjoyed the wonderful Using the Airplane Bathroom video you showed at the Morgan Center conference. How did that collaboration happen, and what has the reception been?


Well, after doing some work with Dennis Debbaudt (who focuses on training first responders and police on encounters with autistic people), he and I came up with the idea that maybe we should do a video on safe travel. And that's what that video is an excerpt from. The full video's been done, it's now in production mode -- all we need to do is finish it up and it'll be available.

Are you the primary actor in the whole video?

Yes. It was a lot of fun. Now we just need to find the time to finish putting it together.