There has been some idiocy in recent days regarding autism being a "scam". Another celebrity (if one can call either party that) referred to the parents concerned about the autism/vaccine link as "parasites." Regarding the people touting these beliefs, I will not add to his or her infamy by rebroadcasting or reprinting their remarks; the latter has made some weak apology, and the former is doubtless enjoying the sensation they have caused.
But these recent incidents have me very concerned. In the past ten years since my oldest son's diagnosis, we as a nation have gone from thinking of autism spectrum disorder as a rare, "orphan" disease to a neurological condition affecting as many as 1 in every 150 children, primarily boys. I remember very well, after the developmental pediatrician's shocking proclamation ("Oh, he's autistic, of course!" she said, just like she was telling us Ben had the measles, not to worry), doing what any good journalist would do -- going to the library to find something, anything about this strange disorder -- and finding three books in all of the Los Angeles Public Library's vast holding that were aimed at parents. Now, if you do a search at lapl.org on the word "autism," you will find 75 items; "autism in children" will net you 62, and even as specific a subject as "parents of children with autism" show a comfortable 21 texts. (There is even a book about how to talk to the parents of children with autism -- perhaps I should send that blunt doctor a copy.)
However, the very public gaffs (or deliberate incitement) of the past week show that the pendulum bringing autism out of the Dark Ages may be swinging back. What was the darling disorder of TIME and Newsweek for the past couple of years -- it even has its own month, April, thanks to the efforts of several autism awareness groups -- is now being blamed for sapping school districts of needed funds, causing a public health crisis from parents who refuse to innoculate their children against serious diseases (however you feel about the topic) and now, being at the root of what some consider the weakening of parental control in our society. ("Spare the rod and spoil your child into being autistic!" these critics shout -- making one wonder what James Dobson et al. would do if they actually had an autistic child or grandchild.)
It is similar to what has happened, sadly, with Attention Deficit Disorder, which in the late 1980s to mid-1990s started to be taken more seriously by researchers -- only to end up as an excuse to sell parents and teachers on the joys of Ritalin. Granted, there was likely some over-diagnosing of children and teens with this disorder; however, many kids who could have been helped by learning more about effective ADD therapies are now suffering because no one wants "that label" anymore.
And this is what I fear may happen with autism. There is already enough stigma attached to the "A" word. Some parents, myself included, talk about our kids having Asperger's Syndrome because it doesn't sound quite as bad (and because the public is just educated enough to know that "Aspie" kids are supposed to be geniuses). If this is the situation with educated parents, who already know what their children need, how in the world will this affect the parents of children not yet diagnosed? Because there will be parents out there whose child is on the autism spectrum who fail to get that child the intervention they need -- all because people around these parents convince them that what they need to do is discipline that child and he or she will stop being autistic. And G-d only knows what kinds of discipline they may turn to in the name of "fixing" their little boy or girl.
All the studies show, and common sense dictates, that early intervention using positive reinforcement -- whether ABA or floortime or whatever methodology fits -- makes a huge difference in helping children with autism to be functional, productive and, we hope, happy human beings. But these methods cost money -- money that often has to be provided through government agencies. How likely is the public to continue funding programs and specialists for children on the autism spectrum if they believe that it is the parents' fault these kids are the way they are?
A long time ago, in the 1950s, a man called Bruno Bettelheim made a name for himself as a therapist by purporting to study and write about autistic children. The cause of their illness, Bettelheim found, was a basic lack of attachment between the child and his or her primary caregivers. The result? As shown in the documentary "Refrigerator Mothers," the children were removed from their homes -- in some cases literally torn away from their grief stricken moms and dads -- and institutionalized, with the idea that they would do better away from their parents' harmful ways. "If anything could be more devastating to a mother than having her child succumb to autism, it might be having to shoulder the blame for the affliction...Though wholly discredited today, the 'refrigerator mother' diagnosis condemned thousands of autistic children to questionable therapies, and their mothers to a long nightmare of self-doubt and guilt" (http://www.pbs.org/pov/pov2002/refrigeratormothers/aboutthefilm.html).
Just like the ill-informed and heartless treatments of the 1950s, the harm being done by today's self-serving celebrities is unconscionable. It is up to the parents, the grandparents, the aunts, the uncles, the teachers, the school personnel, the doctors and nurses and occupational therapists and behaviorists and camp counselors and neighbors and friends -- indeed, anyone who has ever loved a child with autism -- to see that the evil legacy of Bruno Bettleheim and his ilk does not destroy the progress we have made.
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