The Aegis of Autism I – Peter Bell the Third
This article by Peter Bell, the President and CEO of Cure Autism Now, divides autism history into 3 ages.He calls the first age (1940s to 1960s) the “Age of Denial.” I have no argument with him when he writes:
Tragically, the idea that autism was caused by so-called “refrigerator mothers” who raised their children in a nonstimulating environment was pervasive during this period and produced disastrous misconceptions that still linger today.
But I do take issue with his description of the second age, “The Age of Defeat,” from the 1960s to the 1980s.
Once the medical community determined that autism has a biologic origin, the next 30 years were characterized by defeat. Parents were told that nothing could be done to improve the quality of life for their children. Autism was considered a lifelong disorder that couldn’t be treated and eventually required some form of institutionalization. Few scientists were involved in autism research, and most of the research was of marginal quality. Families affected by autism had almost no support and little recourse against the disorder.
It is especially unfortunate that Peter Bell should write this in the same month that the Autism community lost Dr. Eric Schopler. Dr Schopler was a major contributor to the demise of the “refrigerator mother” theory and one of the first to establish that autism is a treatable, neurological disorder.
Note that word, “treatable.” The result of Dr Schopler’s efforts was Division TEACCH, established in 1971 at the University of North Carolina and now providing statewide services to autistic people and their families. At the same time Dr Ivor Lovaas was developing the techniques of applied bhavioural analysis (ABA) for use with severely autistic children. In the UK the first school for autistic children, the Sybil Elgar School, opened in 1965.
Despite the differences in approach, all three initiatives contradict Peter Bell’s claim that Parents were told that nothing could be done to improve the quality of life for their children. It may be that the consultant paediatricians who knew very little of autism gave negative messages to parents. But they did the same for all manner of developmental disorders. Parents of Downs children were routinely informed that their new born baby would be so severely retarded that institutional care was the only option.
This is a long standing problem. The people who have control of the diagnostic process often play no part in the educational and theraputic processes that do improve the quality of life for autistic people and their families. Their medical nostrums are ineffective. So they point out their own ineffectivenesswithout pointing parents towards alternatives that are effective.
Peter Bell seems to accept this point of view. Only a medical solution will do. Without a cure there is no possibility of improvement in quality of life. This could only be true if you accept the premise that autism is a disease that destroys quality of life. Then, only a cure will do. And if a cure is unattainable what if you are tempted to follow the example of Karen McCarron? Too often the murder of autistic children is presented as a mercy killing and we are expected to sympathize with the murderer because parenting an autistic child is presented as being so unremittingly awful.
And so we come to the third age of autism, “The Age of Hope” from the 1990s to the present day. Peter Bell mentions the improvement in outcomes for autistic people who benefit from early diagnosis he fails to develop this idea apart from stressing the importance of quickly getting diagnosed children into intensive behavioral treatment programs while simultaneously arguing that autism treatment and care remain marginally effective
Early diagnosis means that parents learn to uderstand their autistic child. They can develop an autism friendly environment in which their child feels valued and supported. They stop make unreal demands on their child to be normal and concentrate instead on ways to make their child happy. Autism acceptance and support for the concept of Neurodiversity do help to improve the quality of life for children and parents alike.
But Peter Bell does not mention any of these sources of hope. Instead he celebrates the rise in the prevalence of autism, not in the spirit of autism acceptance but because now so many more children are suffering the government will have to do something to cure autism in his child’s lifetime.
I have already argued that the growth in prevalence actually reflects a broadening of the diagnostic criteria together with growing awareness and diagnostic expertise amongst clinicians in my post on New Phase Autism
Peter Bell prefers to argue that hundreds of thousands of families are being devastated by autism because it suits his purpose to manipulate parental fears to exert political pressure, while tugging at the heart strings of corporate sponsors to generate the funds to achieve his stated aim of victory over autism.
I am reminded of another Peter Bell, a servant who stood behind his master’s chair.
It was his fancy to invite
Men of science, wit, and learning,
Who came to lend each other light;
He proudly thought that his gold’s might
Had set those spirits burning.
And men of learning, science, wit,
Considered him as you and I
Think of some rotten tree, and sit
Lounging and dining under it,
Exposed to the wide sky.
And all the while with loose fat smile,
The willing wretch sat winking there,
Believing ’twas his power that made
That jovial scene–and that all paid
Homage to his unnoticed chair.
Though to be sure this place was Hell;
He was the Devil–and all they–
What though the claret circled well,
And wit, like ocean, rose and fell?–
Were damned eternally.
Extract from Peter Bell the Third by Percy Bysshe Shelley.