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Last Day of a Great Conference

Posted Sep 12 2008 9:10am
Today was Day Three of the Conference put on by the the USD Autism Institute: "People, Not Packages". I have already described why I feel this has been such a good conference, and there is no need to go into that again. So I will just discuss two points.
First - Stephen Hinkle, along with Jodi Robledo (Assistant Director of the AI at USD), did his first presentation. Apparently, as Jodi explained, Stephen assisted her in a "breakout" session at last January's conference. The attendees were so impressed with his perspective that they overwhelmingly requested that he become a featured presenter. So here he was. The title of the presentation was "After the Final Bell: The Importance of Extracurricular Inclusion." As the title so adequately indicates, Stephen feels that extracurricular activities are what generate positive feelings about school and result in positive memories from school (what he refers to as the "fun half" of school). He states that his epiphany came when a care-worker of his gave him an "assignment" his senior year of high school to attend the Homecoming Dance. He did so, and that night changed his life. It is his hope that, through his explanation of this issue, other kids will not have to wait quite so late in life to have their "homecoming" night. Just a bit more detail on this guy - Dx'd at age 4, recommended institutionalization (in his words: "A life sentence in prison without chance of parole, for no crime committed). Moved from state to state, settled in California, reached full inclusion in fifth grade, graduated San Diego State University with a B.A. in Computer Science in May 2007, hired as Tech Manager for a new High School - good pay, full benefits, no more SSI, no more Medicaid. He said that, had he kept the address through the years, he would have loved to have sent a copy of his college diploma to the diagnosing psychologist - you know, the one that recommended institutionalization. Great line. The only thing that bugged me about his presentation was the crowd reaction. At times, everyone seemed to get a huge kick out of Stephen doing something such as asking the crowd to offer responses to his hypothetical questions. It was almost as if, since he was pretty much skating through the presentation using very typical public-speaking strategies, this was cause for amusement. I may be taking the whole thing wrong, but I found it to be rather patronizing. Oh well, I guess if everyone shut up whenever I thought they should, not much conversation would take place in the world :)

Second, I just want to summarize what I think the Prime Movers of the conference are really trying to illustrate with their research, analysis, and discussion points. Please understand that this is my take on their message, and that I do not want to put words in their mouths. (They = Dr. Donnellan, Jodi Robledo, and Martha Leary).
What I took from it is that we need to move away from the "deficit model" of autism. The DSM-IV-r defines autism specifically by what autistic people cannot do compared to NT's (by the end of the conference, I must state here, EVERYONE was using the term NT - ever since Amanda's video was shown. Amanda - it really does work - you know, Getting the Truth Out :) ). This, in their view, improperly biases observers to look for "voids" of good behavior or existence of "bad" behavior - without ever considering the root cause of any given behavior at all. It leads to the (classic behaviorist) conclusion that "If I can just isolate this one behavior and eliminate it, my subject will become less autistic."
An example (my own, made up right here on the spot): In small children, a commonly observed autistic behavior is lack of response to the child's name being called. The deficit model would indicate any of the following familiar reasons: She is in her own world (isolation) and cannot hear you; He is so focused on the spinning truck wheel (perseveration) that it trumps all other stimuli, She is overloaded with other stimuli and cannot sort your voice from other sounds (sensory integration), etc...
But perhaps it is that he/she does hear, does want to respond, and simply cannot organize his/her sensori-motor system quickly enough that the observer receives a response quickly enough that it is deemed (culturally determined, of course) to be appropriately delivered in an acceptable period of time. Do you see the difference? This really strikes at the heart of Neurodiversity, in my opinion (and the blog, after all, is One Dad's Opinion). If the child were able to organize himself and respond in one second less time, would this, then, eliminate one aspect of his autism? Would this be the determining factor in receiving a PDD-NOS Dx instead of an autism DX? Very interesting stuff, and I like it because it presumes competence. Presumption of competence is a prerequisite to assigning dignity to another person. Words to live by.
Thanks, USD, for a great learning experience.
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