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Friday, October 17, 2008

Autism conference

It was good. I'm glad I went.

Yesterday's keynote speaker has autism himself and wrote tons of books on the subject. He was an amazing presenter and really engaged the audience. I had to catch the bus, or I'd have bought Autism for Dummies and Beyond the Wall for him to autograph. I'll probably buy them from Amazon later, but I'm still digesting 1001 Great Ideas right now.

Today's speakers included a morning panel with the developmental pediatrician who was part of the team that diagnosed my son and two other professionals on the state autism task force. The lunch session was presented by someone who wrote a book on career paths for people with Aspergers. The career info is a little too early yet, and the diagnostic info a bit too late. And when they talked about HCBS waiver services for the state, it was a bit frustrating, since I know those services aren't funded this year. Lunch conversation was really engaging, and I wish we'd had more time to just talk.

The last speakers were two of the three board of director members of ASAN. They did a good job presenting, even though the whole conference was running late from lunch, and they had some very valid points, but they also ran into the problem of coming off as a little adversarial to parents when describing their anti-cure stance. They were in one breath saying "don't cure us," and in another saying, "we need appropriate treatment." And that's confusing for parents to hear, especially if they confuse the terms "treatment" and "cure."

It's also not evil to wish you could make autism go away for your child. It's a healthy parental wish that you could make your child's life easier, especially if you're watching them get bullied in school. But, as I've said before, it's just not realistic to think that will ever happen.

I think they were just trying to say that parents could spend a year teaching their child to tie their shoes, or they could buy velcro shoes and spend that year teaching them social skills, and we all have to pick our battles and set realistic goals. Most of us would probably agree on that. Unless we're Jenny McCarthy.

I, once again, had to run to go catch the bus, so I missed the closing statements, but I'm fairly sure nobody ended up pulling out a knife. ;-)

A few good points that they brought up in the last panel:
  • By the time your kid reaches high school, they should be participating in IEP meetings, not just sitting in them. They need to learn how to self advocate.
  • Colleges need social and executive skills classes, not just accommodations for academic issues like quiet rooms for tests.
  • People need to think about adults with autism, not just children.
  • Give alternate IQ tests that don't focus on verbal communication.
I wrote down the name for an IQ test, but I'm lazy and not sitting next to my notes. I'll have to transcribe it before I lose the ability to decipher my handwriting. I'd like to ask them about it at my son's IEP meeting, since IQ monitoring was one of his recommendations.

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