Off to the IACC

by Kristina Chew, PhD on November 21st, 2008

I’m on the train to Washington D.C., to attend a meeting of the Interagency Autism Coordinating Committee, which coordinates efforts concerning autism within the US Department of Health and Human Research. There’s a list of the federal and non-federal members of the IACC here; the committee has been overseeing the writing of the Strategic Plan for Autism Spectrum Disorders (ASD) Research. Over the past year, there have been numerous calls for input from “stakeholders”—from anyone concerned about autism—and other meetings of the IACC and of workgroups concerning various parts of the plan.

I went to an IACC meeting just about a year ago and read this statement. While I wrote up and sent in a statement for today’s meeting, there apparently is not space on the agenda for me to read it at the meeting, though I was told that copies of my statement will be included in folders given to the members of the committee. I emphasized the need to focus on research that can directly affect and improve the lives of autistic individuals here, now and today, and on the need to provide education and services for autistic individuals in the community, and that integration and inclusion are not goals to be aimed at, but simply essential.

Time and again in the past years raising Charlie, we’ve more than once heard the suggestion (sometimes a very strongly put suggestion) that Charlie be sent “out,” as in to an “out of district” school placement, where he would be very much outside the community, the people, that he lives in. While we have in the past been interested in Charlie attending a private autism school where all the teaching might be geared towards kids with his sorts of learning profile, I really think that he would lose something if he were not in daily (if limited) contact with kids his age, in a setting that kids his age are generally in.

At the moment, this setting is middle school. I visited Charlie’s classroom on Monday: It’s a well-ordered environment. Charlie uses a schedule broken down into a series of small binders throughout the day. There’s photos, small phrases, and Language Master cards velcro’d to the pages, and he knows to get the different binders and work through the pages.

The physical environment of his classroom is more, what shall I say, institutional-seeming than last year—he’s in a lower-ceilinged room with windows that look out onto a hallway, across from a small courtyard—generally, it’s the whole middle school (with some 1400 students) that seems more “institutional-seeming.” It’s a huge 70s-ish building with lots of shades of brown, all on one level, and without the aesthetic attributes of the town’s high school and elementary schools. It is, indeed, a middle school, playgroundless and the first step towards some kind of adulthood not only for Charlie and his three classmates, but also for every other student at the school. There was a fire drill when I visited. The 1400 students plus many, many teachers and staff all streamed out and stood in neatly ordered rows before streaming back in. Uncertainty, simple bafflement, the wish to run and loll about on the grass, yawns—-these were all to be seen in many of the students.

I thought of Charlie’s struggle to accommodate himself to getting up earlier and to a much earlier start to his school day. Seeing the while middle school out on the grass together, dutifully and somberly lined in rows for a fire drill, many pretending not to shiver in short sleeves though they’d been told to get their coats, it occurred to me that Charlie’s not alone in feeling a sort of loss and puzzlement at finding himself in a bigger setting, and with so many more expectations and demands placed on him. And yet—-

And yet, back when I was just starting to teach (before Charlie was born), I taught Latin at a private school in St. Louis, Missouri. I taught both middle and high school students and was surprised to discover that that 7th and 8th graders seemed so often the most eager to learn, the most determined to know every miniscule thing about third declension i-stem adjectives; the most curious, intellectually and otherwise. And, the most uncertain, insecure, and defiantly confused about anything social (and, of course, involving the opposite sex).

Charlie’s different in ways small and profound from his peers. He doesn’t have homeroom as he stays in one classroom; he doesn’t have science or social studies and he’s not in his first year of learning a foreign language. But he is one among many other kids in our town; he’s not hidden away, and he’s not at all forgotten.

And I guess it’s to make sure that he and kids and individuals like him are never forgotten, segregated, or give second or worse-class treatment, that I took the 5.46am train to Washington, D.C.

Go here to see the agenda for the November 21st meeting.

Tags: , asd, asperger, autism, autism blog, Diagnosis, disabilities blog, disability, Education, fire drill, health and human services, homeroom, IACC, latin, mean girls, middle school, train, washington dc

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