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Autism and the Epidemic of Irresponsibility

by Michelle Dawson

Bruno Bettelheim is still with us and dictating what we think and do about autism.  We know he was a compelling and effective charlatan, but are we aware that he's still calling the shots?  Bettelheim's worst and most enduring crime was to create an extreme:  to push the pendulum up so high on one side that after its release it swung with a vengeance to the opposite extreme and stuck there.  We have progressed from the "Refrigerator Mother" to the "Autistic Person as Poltergeist".  Once accused by Bettelheim of being the cause of autism,  parents are now seen as its heroic and tragic victims.  Taking advantage of the leeway society accords to heroes and martyrs-to-a-cause, they have rejected accountability to autistics, and they have taken control of the research and public agendas.

A catastrophic view of autism means that any scrutiny of the parents' claims is not only unlikely, it is assumed to be reprehensible.  This view of autistics, as ungovernable forces invading and ruining the lives of innocent families, serves the needs of the parents and the entire autism industry, or circus (as an autistic friend puts it).  The result is that autistics are segregated.  With the happy and proud collaboration of governments, courts, researchers, service providers, and funding bodies, parents have succeeded in removing autistics from the vicinity of any important discussions or decisions.

"Do they think we're stupid?"  I asked my friend.  "Or are they scared of us?"

"Both," he said.

In recent committee hearings in the Canadian Senate, a man called David, who refused to give his last name, was invited to speak.  He said:  "I appreciate this opportunity to speak on behalf of Canadian people with autism".  David is not autistic.  He has an autistic son called Adam, and is a big deal in the "autism community" of autism societies and pressure groups and volunteer-martyrs.  David, in this hearing, is so emotionally compelling, so brave and beaten-down, that nobody notices he has horribly mistreated his son and is now defaming him.  David describes Adam, who like many autistics suffers from exceptional academic achievement, forcing the cancellation of David's  "international business trip" by yelling at his parents, "Why don't you kill me?  Why don't you kill me?"  In the highlight of David's testimony, we see that Adam is merely perceiving reality accurately.  David says,  "Autism is worse than cancer in many ways, because the person with autism has a normal lifespan."  To improve the situation, David is saying, we need to make autism fatal.  Then it will only be as bad as cancer.

David's slandering of his son, his incompetent-bordering-on-ignorant testimony about autism and its treatments, and his denigration of all autistics, were effusively praised by the Senators ("moving", "touching") and will be included in their final report.  Autistics will not be.  The world is full of Davids, avidly being listened to, being consulted with.

In the UK, a public health crisis is laid at the feet of Andrew Wakefield and colleagues, and at the doorstep of The Lancet.  There is hand-wringing over the consequences of publishing a questionable article associating autism with MMR vaccination:  the British public panicked and the vaccination rate plummeted.  Britain now has a measles problem and the spectre of resurgence looms.  But scientific irresponsibility, however real, did not cause this public health nightmare.  Parents who prefer the possibility of a dead child with measles to a live child with autism did.

Researchers are pitching right in and getting grants.  In Quebec, where an autism society president declares that measles never killed anyone, a lot of money is being thrown at a study to ascertain whether kids are still getting the MMR vaccination.  Next door in Ontario, parents associate vaccines preserved with mercury--not the mercury-free MMR--with the autism "epidemic" plaguing their children.  Since mercury was largely removed from Canadian vaccines in 1997, parents insisting on this association are working hard indeed.  But parents of autistics are known to be persistent, and when it comes to finding causes and cures, they are insatiable.  Denying that this gigantic appetite has not shaped, skewed, and biased decisions in autism research and treatment is to deny reality.

And I don't hear any researchers objecting:  they enjoy the largesse of the industry/circus, the status of soldiers ranged against the enemy, and the same protection from real scrutiny bestowed on the parents.  They gallop into court, the behavioural analysts do, to give the scientific stamp of approval to their treatment of "autism", which they themselves consider to be a social construct.  Or a psychiatric construct, or a "hilarious accident"/misleading-hypothesis-which-should-be-rejected:  except they don't use these words in court.  They gallop into the lab, the cognitive scientists do, to use fMRI to establish that autistics are unable to ascribe mental states to triangles. They are also finding out about how autistics look at images of human faces.  Nobody has figured out whether autistics look at images differently than at reality because nobody has thought of asking.  And if indeed we do process faces as objects, how possibly can we pick out faces from all other objects and entities and avoid them?  Where is the neurological process to justify this, or do we think, as we endure consequences, invisibly?  And if visual face recognition is the key to autism, why is the President of the Canadian National Institute for the Blind a blind man rather than the tormented parent of a blind child?  And why aren't blind people subjected to 40 hours of ABA a week to teach them eye contact, appropriate gaze, how to point, joint attention, and so on?

They gallop away from their duty, the epidemiologists do, retreating from their responsibility to instruct the rest of the autism industry/circus--as well as the public, and governments--that the only autism epidemic justified by evidence is the recent upsurge in the number of papers published about autism in peer-reviewed journals.

They gallop into the public arena, the experts do---to great applause from the parents---bearing treatments and methods in danger of exhausting available acronyms:  ABA, IBI, AVB, PRT, DTT, NET, RPM, DIR, SCERTS, etc.

Someone should notice that no one knows what autism is, and that the major questions that ethically should take priority are missing from the agenda just like autistics are.  For example, we don't know the nature of mental retardation, or for that matter intelligence, in autism;  and we have no clue about the extent to which odd autistic behaviours are entangled with exceptional autistic abilities.  Ethics are not high up on the list when a scourge worse than cancer is being wrestled with.

It seems to me that we don't need to exorcise the Poltergeist.  I have not discussed the consequences of a world lacking in both autistic genetics and behaviours, but maybe someone should.  We need to exorcise the ghost of Bettelheim, get the pendulum unstuck, and force accountability on parents and the whole autism circus.  The people who can accomplish this are autistics, but our only role in this circus is as fodder for the performers.  I don't know if there are degrees of ostracism, but we are as ostracized as ostracized gets.

"What's the worst thing about being autistic?"  I was once asked, as to a child, by an ingratiating health-care professional. 

I replied,  "Being hated."

2003 Michelle Dawson, all rights reserved

This page published September 9, 2003
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