Monday, July 9, 2007

Good Things at USD

Hello again!
After a two-week hiatus which consisted partly of a family vacation (more on that in another post), I have returned to the blogosphere. And the reason I am writing today is that I feel just a little bit inspired.
Today, I attended day 1 of three-day Autism Conference at the University of San Diego. USD is my alma mater, and today is the first time I have really spent any time on campus since I graduated 14 years ago. I even walked up and spent a few moments in front of my freshman dorm room, which is situated, like all rooms in this building, on an outdoor-corridor. I stood there for hundreds of hours making friends and discussing anything from philosophy to psychology to coeds those many years ago - it was strange to stand there today and compare myself as an individual to how I was then. In some ways I think I've improved, in others I've declined - such is life I guess.
When I signed up for this conference, it was the first I has really become aware that USD had incepted an Autism Institute, and I was curious as to how they viewed Autism in general. UCSD, mind you, is the home of ARI, so our area has a somewhat dubious track record in this area. Then again, UCSD is a major research institution, whereas little old USD is a liberal arts school. The AI at USD is an adjunct of the School of Leadership and Education Science, and the conference took place in the spectacular Joan B. Kroc Institute for Peace and Justice - a good forbearing of the philosophical approach taken by the organizers.

I arrived expecting to find the predictable horde of cure-sellers. There were none. There was a "bookstore" selling all types of autism-related literature and that's it. No commercialization to tarnish the image of this group!
I settled in and listened to the opening presenter - one Anne Donnellan, Ph.D. She, as Director of the AI, set the tone for the whole conference by opening with the theme "People, not Packages". She asked for a show of hands as she identified her audience. Parents? About 10 of us. Behavioral Therapists? Looked like about 60. Teachers? Maybe 120. OT, PT, SLT? 40 or so. Administrators and government service providers? 10 more. She mumbled something about needing to attract more parents to these conferences and was moving on when a voice in the front of the room said loudly, "Um, you forgot someone!" She smiled at the interloper and said, "Self-Advocates?" The speaker raised his hand - the only hand to raise - to everyone;s applause. I later came to find out this guy was named Stephen Hinkle. Good job, Stephen! No further discussion of the day is possible without referring to Mr. Hinkle's contributions. He was bright, funny, active, energetic, and made the most profound and salient points of anyone in the room. He interjected about 15 or 20 times over the course of the day, always starting with, "I'd like to respond to something you just said..." His ensuing response was guaranteed to be long-winded, well-reasoned, and directly related to the topic at hand. The paid presenters could not have asked for a better supporter of their presentations. What a classy guy, what a pleasure to have him there. I always read the autistic bloggers lament the lack of inclusion of autistic people at functions such as this, and today is a perfect illustration of why. After each response, he would pause for a while, sit down, rock back and forth for maybe 30 seconds, sometimes scan the room, and have a huge smile on his face. I hope to track him down in the next two days and ask him to look over the Hub - he could be a great contributor here if he likes to write.
Anyway, back to Dr. Donnellan. In the first 30 minutes or so, I knew the USD Autism Institute was in good hands. During that span, she stated that:
  • The "spectrum" is a nice way to help people discuss the issue, but it doesn't really exist and probably causes more harm than good by virtue of the fact that it puts non-verbal autistics at one "end", thereby isolating them from the rest and casting a negative light on their 'group'.
  • IQ tests are absolutely bogus, and should be ignored. She understands their significance as an existing measurement (for example, she used IQ tests in one of her published studies that concluded that ABA therapy is not nearly as effective as it purports to be), but thinks the whole idea of using them to measure general intelligence is tremendously flawed and harmful to those who do not benefit from the tests inherent bias.
  • Autism does not truly exist. In her words "Can you touch it? Can you see it?" No. She views autism as a way to describe the interaction between typically-"wired" people and a large of group of atypically-"wired" people (enough of whom are homogenous in at least enough ways as to have been assigned a term that adequately describes some of their most recognizable characteristics). I have presented this concept way too simply here, so cut me some slack, and she admittedly only spent a brief moment on it, but I think I have an idea where her thought process is going with this.
  • She showed a version of this video, A Credo For Support.
  • She asked everyone to acknowledge that she is NOT an expert in autism, and furthermore that no one person is. She says that if anyone says they are, question everything they say. She then had us do a group exercise that consisted of her asking us to repeat and therefore learn by rote memory the most important phrase those who work with or live with Autistic people should know. The phrase? "I DON'T KNOW".
  • She admires and appreciates Dr. Temple Grandin, but is concerned that since Temple has so much exposure that the public is beginning to overgeneralize her particular experience with autism the "the way autism is". Interesting insight.

There was much more from Dr. Donnellan, but you get the gist of it. The day ended with a showing of the Autism Every Day self-documentary by Sue Rubin, followed by a Q&A with Ms. Rubin and her parents. This post is getting a bit long, so if anyone has any questions about Sue Rubin or the content of the Q&A, comment here or email me directly.

I'll hope to update you with more good stuff from days 2 and 3!


Camille said...

Wow! It sounds like a great conference!

I said something during a sort of public testimony thing at a recent "town hall" at the MIND Institute.

My voice started to quaver from nervousness halfway through my 1 minute long comment. When I sat down my hands were shaking. Part of the reason for that was because I was in a kind of hostile room. Lenny Schafer was there, Rick Rollens was there, I was looking at him during part of my comment, and mercury moms and dads were there.... not to mention some MIND researchers... and others.

I wish I could meet Stephen Hinkle, he sounds like a very bright person.

Camille said...

Oh, my visit to the "town hall" was last Friday.

kristina said...

Thanks for the upbeat report----

Bev said...

Thanks, Steve! Sounds like an excellent conference experience so far. Dr. Donnellan sounds like a wise person; I certainly know a few autism "experts" who could use this message (but I'm not sure they have the ears for it). I'm looking forward to reading more.

mcewen said...

One day I too will go to a conference. Thanks for letting me visit vicariously. Looking forward to hearing about the next to days.

Steve D said...

Thank you all for your comments - Day 2 was great as well. I'll post on that soon.