Are Things Really Any Better?
For all that autism has a "higher profile" in the public eye and for all that more children are being diagnosed with an autism spectrum disorder (and more adults with a certain "computer geek obsessive weird interest" profile are said possibly to have Asperger's Syndrome)—for all that autism has become a "common, even fashionable condition," life for those "affected by it" is in no way easier. So Michael Fitzpatrick, a London GP and the father of 15-year-old James, contends in an article in the October 12th Times of London. He writes:
The higher profile of autism cannot be attributed to scientific advances. Though there have been impressive developments in our understanding of the genetics and psychological features of autism, neuroscience has yet to make much headway in elucidating the mediating links — or in suggesting therapeutic interventions. The increased awareness and wider diagnosis of autism appear to be largely the result of a cultural trend towards redefining human differences in terms of disorder. The question we now face, as James embarks on the transition to adult life, is: have things really improved for people with autism?
There can be no doubt that in many ways we have made progress. Parents are no longer blamed for making their children autistic through their frigid personalities, as they were as result of influential psychodynamic theories in the postwar decades. Behavioural and educational programmes have been developed for children at home and at school, though access to these remains uneven. And though there is much talk of provision for adults, including help with housing and employment, the reality remains one of a constant struggle for services.
I feel quite in agreement about this. There is plenty of talk and hand-wringing about the lack of services and programs, of employment and housing, for adults on the spectrum. There are committees and task forces and one does often hear stories of hope and success, such as a recent Wired magazine article about Specialisterne (Danish for "Specialists"), a Danish IT company that hires many individuals on the spectrum; its owner, Thorkil Sonne, has an autistic son. And, as Fitzpatrick writes, there has been "progress" in that parents are no longer routinely blamed for causing their child to become autistic, and we seem to have a better understanding of how to teach autistic individuals.
But I have to tell you, our recent experience with Charlie's school situation in general and with our school district in particular has led Jim and me deeply to question the "progress" made in how parents of autistic children are perceived by "autism professionals," and, too, to think more than twice about some of the educational methods used to teach autistic children.
The public school autism program that Charlie has been in for the past 3+ years is regarded (here in New Jersey and in New York and elsewhere; word gets around) as a sort of "flagship" program, as a model for how a public school district can create an appropriate, and even "high quality," education for autistic children. This program not only uses ABA, but a version of ABA that is very structured and "tight" (as in this private school and this one). The district's ABA consultant directs a graduate program at a local college that offers Master's degrees in ABA and is now going to offer a Ph.D. in ABA. Many of Charlie's teachers and aides are students in this program, with a view to providing a higher level of expertise to the students and immediately, without having to call on an ABA consultant.
So the fact that this program has offered one solution for Charlie's "behavior problems"—a helmet and restraints—has led us seriously to question this program, and to reaccess the training of its staff in teaching autistic children. The fact that Jim and I—yeah, we have Ph.D.'s but with Charlie, we're "just" parents—were able to get rid of him wearing that helmet and to help him minimize any major "behaviors" or "tantrums" or "meltdowns" suggests to me that, while ABA can accomplish certain things, behaviorism isn't always how to address a child's "behavior problems."
I used often to say that, had Charlie lived some 20 or 30 years ago, he would have been taken from us and placed in a residential facility at a young age, perhaps as young as seven. I was glad to note one sure sign of progress in the education of autistic children today, that there are teaching methods and treatments (medication, in Charlie's case) that can (again, in some cases) address some of the "autism nightmare without end" sort of behaviors. Not only have teaching methods become more humane, but our understanding of autistic individuals has expanded.
Yeah, I'm eating my words.
When Charlie's teacher first mentioned that the school district—as advised by the autism consultant, I infer—needed to be placed in Bancroft Neurohealth's Lindens Behavioral Unit for a "temporary residential placement," and that this placement was the only way that Charlie's self-injurious behaviors could be eliminated, and that eliminating them was necessary if he were to have any sort of life with a job and in the community in the future—when I heard that, I burst into tears. (His teacher, as I recall her expression, seemed taken aback, but that is my impression.) I had most definitely heard of Bancroft. Charlie's teacher was in our living room on a home visit (such home visits are part of the autism program in the school district.) When, several months later in May of 2009, Bancroft was brought up again as what Charlie needed (at a time when he was wearing the helmet and the school staff was using restraints), I told his teacher that talking about such was a change in Charlie's placement and not the sort of the thing (legally) to bring up at a home "parent training" session, but at an IEP meeting.
The school district informed us the next day that an IEP meeting was necessary. This meeting was cancelled the day before it was to happen when the Supervisor of Special Education called me saying that she had to go Ireland immediately as her grandmother had died. The meeting was held in July.
We've had a great deal of time to reflect on these events and the one thing I've realized is, I think I know how mothers in the 1960s felt when they were told they were the reason for their child being autistic, and that—to get the child better—the child had to be taken away from them, from their families. The words of the women in the 2002 documentary Refrigerator Mothers have been ringing through my head. I'm sure some will say that I'm over-reacting and over-reading. But the pain and suffering on those mothers' faces in the film—I feel that I know these now too well, and more from the inside out than ever.
I feel practically nauseous when I see the helmet, off or on Charlie's head. That blue plastic thing may as well be a dunce cap. It's become a symbol to Jim and me of how little "progress" has indeed been made in acknowledging and respecting the dignity of individuals on the autism spectrum, of those with disabilities, cognitive, intellectual, physical. The school district insisting on the helmet takes us all—takes its autism program— right back to 1967, which is when Bruno Bettelheim's The Empty Fortress: Infantile Autism and the Birth of the Self was published.
By putting the helmet on Charlie, and by consistently refusing to acknowledge how Jim and I, Charlie's parents, got it off him, our school district and those who run its autism program, reveal that they have walled themselves into a fortress of their own, one in which they're so withdrawn into their own principles and beliefs that they can't hear the voices, ideas, suggestions, or anything of anyone else. And not, I'm suspecting, of a certain young man I know.
And. Because Jim and I know this young guy, we know our lives—even with everything I have said in this post—are better, that life is good and life is better and as good as it gets because we have our Charlie, and because we go with him.