I was intrigued by the NYT story How About Not 'Curing' Us, Some Autistics Are Pleading, so I looked around some of the web sites run by autistics mentioned in the article. I found some fascinating stuff. Michelle Dawson, quoted in the article is one heck of a writer. I found myself laughing out loud and reading passages to my husband -- a rare occurance with things I find to read on the web. Her quiet, relentless demolition of the ethics of using beheviorist techniques to "cure" autism, entitled THE MISBEHAVIOUR OF BEHAVIOURISTS: Ethical Challenges to the Autism-ABA Industry is a joy to read.
Here is a sampling of passages:
In 1991, researchers from Rutgers, including the well-known behaviourists Sandra Harris and Jan Handleman, published a study about the consequences of aversives in autism programs. The study was called "Does punishment hurt? The impact of aversives on the clinician." They compared the morale and job satisfaction of more than 100 staff, divided into those who could use only mild aversives, and those who could use severe aversives on their autistic clients. Severe aversives included (and one assumes were not limited to) "slap, pinch, electric shock, noxious odor, noxious liquid, and hair pull."
Restraints were removed from the scope of this study when no one involved could decide whether their use on autistics constituted a "mild" or "severe" aversive. Clearly, they did not ask an autistic. Nor did anyone notice that autistics had been injured and killed in restraints, which might argue for a classification of "severe".
In any case, the researchers' concern that clinicians routinely applying severe aversives to autistics would suffer for this proved groundless. They found that those applying severe aversives were happiest and reported less job-related stress and greater personal accomplishment. In fact, the longer they had been at it, the more personally accomplished they reported being.
. . . and . . .
Autistics cannot communicate. Autistics are incapable of learning from a typical environment. Autistic behaviours and interests are useless and wrong. These are some behaviourist claims at the core of autism-ABA. When this treatment was being developed, intelligence and autism--that is, autistic behaviours--were assumed rarely to co-exist. There have since been radical changes in autism diagnostic criteria and epidemiology which are subversive of most core behaviourist claims about autistics. No commensurate adjustments have been made in the tenets of the autism-ABA industry: tenets which, having been deserted by their scientific basis, remain stubbornly in place as articles of faith.
As I naively pointed out to the behaviour analyst Gina Green, there is no scientific evidence that autistic behaviours are incompatible with intelligence, learning, and achievement. She countered that there exists no proof they are compatible. Untreated intelligent autistics are mere anecdotes, which, in her view, means non-existent. All ABA-deprived autistics are by definition unintelligent, uneducable, and unaccomplished, until the day behaviourists like Dr Green decide to believe, by their criteria, otherwise.
This sort of "science" informs the autism-ABA industry's omnipresent exercise in fiscal coercion, the cost-benefit analysis. In its most popular manifestation, Dr Green and colleagues base their analysis on an elaboration of the articles of faith listed above: all ABA-deprived autistics are a financial burden on society; all ABA-deprived autistics are lifetime liabilities; and all ABA-deprived autistics contribute nothing whatsoever to society.
Similar articles of faith have been imposed on other groups. I couldn't vote until 1940 or deliver the mail until 1980 in the province where I live. This is because, like Dr Green, I'm female. Quebec females did not undergo behaviour modification in order to become intelligent enough to vote or strong and tough enough to deliver the mail circa 1940 and 1980. In fact, we did not change at all. We did not prove anything we hadn't already proven for centuries. But suddenly, we were discovered to have qualities we never had before.
I have no dog in this fight. Before reading Dawson, I had a vaguely favorable opinion of this kind of treatment for autism, having encountered advocacy for it on the web. I remember thinking, At least behaviorism is good for something. In any case, I find her literary voice clear and compelling, the kind of voice I would happily follow for thousands of pages. But I must stop now because it's time to put my kids to bed. But here's one last bit:
My fourth ethical challenge to the autism-ABA industry is directly stated: I challenge behaviourists to realize that human rights violations do not just damage and destroy their victims. They also damage those who commit them. Human rights violations compromise your work, mar your science, and undermine your credibility. They cast doubt on your successes and call into question your own humanity. You have decided to deny our rights and our worth to get what you want and this leads to worst outcomes for everyone.
UPDATE: I have received a couple of nasty comments from "parents" whose remarks cross the line into trolling which I have not let through the comment approval process. One sounds to me like "she" may be a practitioner rather than a parent by "her" tone, and the other seems to think that telling me that her child started out subhuman will sway me to his or her point of view. Look, people. I am a fellow parent. I know what it is like to negotiate with insurance companies. I have met a lot of other special ed parents. The special ed parents I know care about the ethics of the treatment of their children. How come the ones who are writing to me care more about whether Dawson is autistic than about the very convincing arguments she raises? What is wrong with you people? I'm willing to be convinced but not insulted.