Once upon a time, I think we thought we knew, or at least had a strong inkling. It had to be ABA-based, had to have lots of structure, 1:1 staff-to-student ratio. Had to have staff with a certain type and level of training.
Since Charlie was diagnosed with autism in July of 1999, we've heard about, and done our best to learn as much as we might, about the varieties of ABA (verbal behavior, pivotal response training, and more) and about the varieties of teaching methodologies for children on the spectrum (Floortime, RDI, and so forth). We've returned again and again to ABA due to, as noted, the severity of behavior issues that Charlie has had.
While his current school program has, on paper, what he "needs," there are clearly some missing ingredients. One that Jim and I have been discussing is that, at least in the middle school where Charlie has been a student since June of 2008, there does not seem to have been much (any) effort(s) to think about how to make his program, and him and the other students in his class, be a part of the middle school. Because Charlie's academics are far from the level of the other middle school students, he was not included in any settings with non-autistic peers at the school, and then his behavior problems mushroomed to such an extent that for "safety" any kind of inclusion became out of the question.
This leaves the question hanging: Did some of Charlie's behavior issues stem from the lack of inclusion, from the fact that he was in one not too large classroom with windows looking out on a hallway for almost all of the school day (including lunch)? Did the ABA consultant or the staff in Charlie's room seek to work with the principal and other school staff to weave Charlie's classroom into the fabric of the middle school----or were Charlie and his classmates (and the teacher and her staff) more or less plunked down in the school, consigned to whatever classroom was available, and considered fortunate even to have that?
The whole experience has got me thinking very hard about what is needed to create an autism program in a public school setting.
It's not simply that "ABA wasn't working." The middle school has not been a setting willing, open, able to accommodate for students like Charlie. As he has not been able to "fit" into the model provided, he's being removed from that setting. But will any more efforts be made to create a school program for kids like Charlie, kids with his range of needs and challenges? Is such a program possible for every student on the spectrum in a public school setting? And as for how the proposed changes in the DSM-V might affect school placements and program---not sure we're all ready to start going there.
I have to admit that Jim and I have been feeling relieved that Charlie will no longer be at the public middle school. It's a very restrictive environment, and not only for Charlie, but for all the students---leading me to realize, I don't think I would have wanted to send a non-autistic child there; something a little more nurturing with less of a focus on Achievement and Discipline would be our personal preference. In other words, the questions I've been thinking about as regards schools for kids like Charlie are really questions about schools in general.
I've no answers. The questions seem to be multiplying by the minute.
And on a completely different note from pondering what to do about the education of students on the autism spectrum, is another topic that Jim and I have been going over more than a few times. Both Jim and I had a very hard time in middle school. Jim was helped greatly because he happened to be in a small school, a Catholic, diocesan school in the Connecticut town he lived in. But he still struggled plenty (ADHD before anyone called it that and nuns don't mix). I struggled through two years (the second completely miserable) at a huge public junior high school in Oakland, at the end of which my parents found a last-minute spot for me at a small private high school on the Oakland-Berkeley border and while I still had "stuff," I certainly thrived academically.
Jim and I made it through, somehow or other; somehow or other found our way, and perhaps in despite of what school had to offer us. Given the history of both of his parents in their middle school/adolescent years, I supposed we shouldn't be too surprised that our son has his middle school blues/struggles too. Forget about "recovery," mainstreaming, inclusion: Our goal right now is to keep Charlie out of a placement far more restrictive---institutional---than the one he soon will be at. To keep Charlie with us here at home.