Wednesday, November 01, 2006

Immediate rewards...

B is off school today & tomorrow for teacher conferences & B's conference was this morning. It was lovely to sleep in a bit (C & B didn't, but they usually don't anyway...) & then we all had breakfast together (on a weekday!). Before heading off to school C & I had a short time to go over some of the topics presented at the autism conference yesterday...

The main speaker, Marshalyn Yeargin-Allsopp, MD, of the CDC spoke on "Autism: Is There an Epidemic?" & C thought it was a very well-done presentation. I thought of Kristina when C said Dr. Yeargin-Allsopp explained the greek derivation of the word "epidemic" as epi (upon), demos (people). As we discussed the findings, I was struck by how much of this information depended on how autism is defined. The studies are all over the place in terms of who is considered autistic for the purposes of the study, with some including everyone on the spectrum & others limited to just those identified with "Kanners". It seems to me that putting all of this together must be as frustrating as trying to add apples & oranges... Another difficulty is that age of onset is equated in some studies with age of diagnosis, which is simply silly to my way of thinking. Although B was diagnosed with Aspergers at the age of 6, it is clear to us that he had "something" going on from the time he was born. This difficulty was cited in connexion with the studies looking at autism incidence, & other problems were that the diagnosis was not confirmed in most studies, & that most studies looking at incidence didn't take the changing diagnostic criteria over time into account. Some of the difficulties with assessing autism prevalence had to do with when it became an actual diagnosis. It wasn't a reportable education diagnosis until 1992 in the US & it wasn't separated diagnostically from schizophrenia & designated as a non-psychiatric-illness diagnosis until 1980. (Some of this just boggles the mind...) When they put all of the trend studies of autism prevalence together, however, the bottom line was that "Attributed (prevalence) increases (mostly ASD) to increased awareness ans service availabilty, improved recognition & methodologic changes." In other words, there is no evidence of an epidemic. In the conclusion of the presentation she was careful to say that there is still alot that is not known about the incidence & prevalence of autism, but that there are more children being recognised with autism today than in the past. There are many more studies going on today, too, which will continue to help with early intervention, seeing as studies have shown that early intervention makes a positive difference for children with autism. This, of course, is just an overview of the Dr. Yeargin-Allsopp's talk... There were other presentations that we didn't get to talk about yet & that I'll try to get to over the next few days (as C & I get to them).

One of the immediate rewards of C's attending this conference was the result of the presentation on "Nonverbal Communication in Autism", which reviewed recent research on nonverbal communication & looked at how these findings can help with diagnosis & intervention. One of the findings of research into nonverbal communication in autism is that people who are very verbal (like B) can have a great deal of difficulty with non-verbal forms of communication, such as expository writing. This struck both C & I as relevant because one of B's main complaints about school this year is that they're requiring him to do too much writing... (writing, as in typing on his alphasmart). One of the accomodations made for B very early in his homework career (beginning in 3rd grade) was that he didn't have to do any expository writing at home, since it sent him into a complete tizzy. Multiple choice questions or math homework was fine, just no writing. So, today at B's school conference, C asked B if he felt it would be easier of he could speak his schoolwork into a tape-recorder, rather than write it. B thought about it & said he thought that would be good. From long experience with B, we both know that he is capable of dreaming up amazing flights of imaginative fancy, but ask him to write it down & you hit a brick wall... Today, on one of the self-assessments he shared with us at his conference, I noticed that his speech therapist had scribed it for him (because he'd done a lot of writing earlier in the day & had burnt-out on writing, his teachers explained) & that the the language he'd dictated was far more complex & interesting than anything he'd typed himself. I've noticed this when he's written emails & letters, too. He makes it much simpler than his usual way of saying things because it's just too long to write... As C & B & Cherie (B's consultant teacher) were discussing tape-recording, my mind jumped to voice-recognition software, & I noticed that B's classroom teacher, Jen, had a faraway look in her eyes, too. We were both thinking the same thing, it turns out :) When we mentioned it Cherie said that she'd been hoping to be able to someday get this sort of thing for school, but her research showed it was really expensive. B's speech therapist came flying into his conference at that point- she was juggling conferences & seeing kids at other schools today. When we told her what we'd been discussing, she immediately said she'd contact the assistive technology team for the district & see what they had to offer. I left B's conference feeling really excited. If we can put something like this in place for him, I can see his school anxiety going waaaay down. Plus, being high-tech, he'd love using it :) So, even if the district can't help us out, we'll find some way to make this a reality. Just thinking about where B could take this gives me goosbumps!

B had a buddy from school coming over at noon, another boy on the spectrum who is known to sit & read a book while over for a "playdate". He & B share an interest in pokemon & playing the trading card game, but this kid is much better at it than B & B tends to get tired of losing to him. C ordered pizza for us all for lunch, while the boys played a game, & then after we ate he took them out to fly a kite we'd never tried before, with great success (it turned out to be a trick kite, that dipped & dived like mad). After they came back to the house C told them they could "spy" on him for an hour, so they set B's alarms & established perimiters (I took to the refuge of my attic studio...). When I came down an hour later, C was being trounced by B's buddy in a pokemon card game & B was playing Adeventure Quest on the computer... sigh. Eventually buddy joined B at the computer & they seemed to have a good time, but we noted after they took this friend home that it took a heck of a lot of energy to keep these guys engaged with each other. B was particularly tired at bedtime & had some major OCD interferences as he tried to settle-in before I read to him. He became frantic about Rufus having touched his left side & nearly said that he wanted to amputate his own left arm (!) but we shifted the thought a bit & he decided it would be better to amputate the "unruly Skitty" (OCD) instead. This actually made him giggle & dissipated the thought enough for him to relax & listen to me read. He zonked-out within 5 minutes of my having finished a chapter, even though he seemed wide awake to me... I suspect it was another weird day (no school) as well as having a socially stressful afternoon that did it. Tomorrow I am determined that we'll begin a weaving project together (christmas prezzie for a dear friend), after doing the weekly grocery shopping. I'm hoping to break-up the computer-gaming a bit, since all he seems to want to do at home these days is play AQ (his term for it :). Wish me luck!


At 5:27 AM, Blogger Sharon said...

I hope you manage to get the voice recognition software sorted out for B. It sounds ideal for him. It is frustrating to think that all those wonderful ideas and thoughts are in him, but can't be recorded at present.
My daughter really resists writing too, though she can tell you all sorts of wonderful stories.

At 12:36 AM, Blogger Kristina Chew said...

Grinker's Unstrange Minds cogently reviews the statistics for the "rising prevalence" of autism while also explaining how changes in the DSM's diagnostic criteria have affected our understanding of what we "see" as autism. Look forward to more of your reports! (on the conference and on B, of course)


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