"Where in the World is Dr. Stephen Shore?"...well Dr. Stephen Shore is apt to be anywhere in the world, but almost always performing the same service:
“Improving life for people on the autism spectrum....
one trip at a time!”
Kathleen: Hello Stephen....Thank you for taking the time to share the highlights from today’s Autism Conference at the White House! Here is a recording of the intro that was televised on the White House Live streaming channel. In this clip we hear comments from Valerie Jarret and Kathleen Sebelius:
Kathleen: After this initial welcome and intro, please describe first who was there and what took place when you broke up into focus groups.
Stephen: Reporting to you from Route 95, Delaware Turnpike on the way back from a day at the White House in Washington, DC.
Kathleen: This is so exciting! After you broke up into groups....please set the scene for us.
Stephen: Of course. Tom Insel, director of the Interagency Autism Coordinating Commitee led the discussion. The first question thrown to the group had to do with what we considered as most compelling in the area of research and innovation. I came up with the first response suggesting that we need to be more provide more resources into figuring out how to support adults with autism in higher education and employment.
That there were many cases where a person may be more than qualified for a position, yet fails because he or she is lacking in social skills or other areas required for successfully maintaining employment. And similarly, for achieving their potential in higher education.
The second area of concern was borne out of a discussion I had with Ari Ne’eman, Executive Director of the ASAN. This is the potential for unintended negative consequences from the upcoming DSM 5 descriptors for autism and how they might be used for diagnosis and treatment.
(Here we have video shot by Michael Leventhal during Stephen's trip to the White House. Included is footage of Ari along with other presigious members of the autism advocacy community and a little 'sight seeing' thrown in)
For example, the imperfect subtyping of autism that now exists is being replaced with one large category “autism spectrum” with the addition of a severity scale based on certain characteristics. One such characteristics has to do with how difficult it may be to distract a child from and intense interest they are engaged in. A possible unwanted consequence is that educators might think it’s a good idea to “interventionize” these pre-occupations out of a person with autism. However, it is this very characteristic that provides people with autism the intense focus needed to master an area of knowledge; often to a point of significant expertise.
It may be better to think about harnessing that intense or deep interest rather than squashing it. So that’s an example of an unintended and unwanted consequence.
Ari Na’eman also pointed out the only 1 (or perhaps it was 3)% of funding suggested by the IACC went to supporting adults with autism.
Kathleen: There needs to be a definite understanding of what causes an individual the amount of stress that reduces quality of life doesn’t it when addressing tendencies and pre-occupations.
Stephen: That’s right. Then it was interesting to hear from three parents who have children who are more significantly affected with autism. These parents were Laura Bono, Ailson Singer, and Lyn Redwood. They expressed concern about children with autism who as they suggested were truly “sick.” In this sense they talked about the need to research into gastrointestinal and immune system issues.
Eric Courschesne, a researcher, commented that 20 years ago almost all research was devoted to adolescents and adults and now that efforts have swung towards younger children we should not take that away. David Amarall, another researcher suggested that instead of redirecting funds we should expand research to accommodate all areas of need.
Kathleen: So each of the focus groups was a blend of educators, advocates, researchers and parents?
Stephen: Yes. The groups were made of this blend.
Kathleen: Were there any particular dynamics that came about as a result of the blend that you do not typically see when in a group of either/or......educators, researchers and/or parents, family members.
Stephen: Yes. Perhaps it brought out the tugs and tensions between whether autism is considered as disability, disorder, or a difference. I commented that autism is not necessarily a disorder but perhaps a different way of being. However, there are a number of things about autism that are disordering and that’s why we are all here – trying to figure these things out.
Kathleen: At the end of the combined session were you left with the feeling that there was less or more contention in the air as a result of the coming together.
Stephen: At the end of combined sessions there was a sense for a greater need for
1. Urgency (In other words we need to do something about it now)
2. Coordination between groups is needed, and,
3. Accountability of research.
It was quote a day on the “hill.” Even though we did not see President Obama or the First Lady we did get a lot of good work done. I hope the government is able to take something useful from our discussion that will aide in collaboration between government, education, industry, parent, people with autism and other constituents of the autism community to make the world a better place for people with autism.
Kathleen: The focus of your group was research and innovation. What were the other groups focused on in their discussions?
Stephen:The groups were
1. Education and Employment
2. Community-based Services
3. Research and Innovation (My group)
4. Public Health/Healthcare
Kathleen: I’m a little sad that you were not in on the education and employment talks. That is where your research into comparative approaches to autism education would have been invaluable. I understand that what you shared had benefit.....but that may have been an even better use of your experience and understanding. What were your thoughts, however, on what that focus group brought back to the others?
Stephen: I wished I were in the education and employment group as well. However, I think I was able to put my experiences to good work on the research side as well.
A lot of what was mentioned from the other groups mirrored what we had said. And that was good to see agreement in these areas.
Kathleen: Were the 5-7 different approaches that you generally compare mentioned from the education focus group? Or were there mostly general concerns regarding implementation of education in the public school setting?
Stephen: I heard no mention of these approaches so I think the discussion was more in a general sense.
Kathleen: One more question along that line.....did inclusion seem to be a topic of that conversation?
Stephen: OK. I heard very little about inclusion save for a short discussion in our research group about how most studies take place in separate settings because it’s easier to get subjects that way.
Kathleen: I sincerely hope it becomes more and more common. Not only is it a lost opportunity for best practice for children on the spectrum but also a lost opportunity for “neurotypical’ children to feel part of a multi-faceted community.
Stephen:I agree. The biggest challenge facing the practice of inclusion is a lack of resources to do it properly. As a result of lack of support given to educators engaging in inclusion, things end up going poor;y and that gives inclusion a bad name.
Kathleen: In addition to lack of support, do you think that we’re still working with out dated teaching models to begin with? Even before lack of support is an issue.....do you think that teaching methods need a hefty UP DATE?
Stephen:Yes. We also need to approach people with autism, and by extension others having special needs, with the philosophy of what they can do rather than by what they can’t. The diagnostic and educational process tends towards a deficit model.
Kathleen: This reminds me of a conversation I had earlier today with your friend and colleague, Keri Bowers, regarding the different learning styles of children and specifically in the use of art and music. It seems that not only with children on the autism spectrum but with all children, there are specific learning styles that simply do best when given the appropriate focus and support.....much of which has been minimized and taken from many school systems throughout the country. Hopefully discussions like the ones you and your groups had today at our nation’s capital will help education redirect its focus toward teaching to the child rather than an assessment tool.
On the lighter side was there anything different or out of the ordinary at today’s session at the White House?
Stephen: At the beginning of the day the room was way too hot and people were fanning themselves with sheets of paper. SO I asked one of the people working in the building if they could lower the temperature. People were flapping and it was not because they were autistic!
Kathleen: Ha! Never a dull moment with you my friend.
Stephen: Gotta have fun. Too much seriousness in the world.
Kathleen: You’re very right! I’m probably the queen of seriousness but I’m trying to learn from you, Stephen, to lighten up!
Stephen: We’ll have to straighten you out on that one.
Kathleen: I look forward to it. Thank you Stephen for your time and effort to share with us as tired as I know you must be.
Stephen: It was my pleasure. The end of the week will bring a panel discussion on autism and relations at both Harvard University in Cambridge, MA and the Current Trends in Autism conference in Natick, MA.
Kathleen: Excellent. Let’s get together please and talk more about these presentations and all the interesting information that you and others bring to the conversation on Autism awareness.
Stephen: It will be my pleasure to do so.
I’ll be updating as Stephen makes the rounds at various autism spectrum conferences, presentations and related functions. To catch our conversations, watch for the next: "Where in the world is Dr. Stephen Shore!”
It is my privilege and pleasure to follow along with Stephen while he is:
"Improving life for people on the autism spectrum....one trip at a time!"
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