The 12/4 Boston Globe Sunday Magazine ran a piece on vaccination and autism by Dr. Darshak Sanghavi. The bit that really got under my skin, if you will, was the following quote:
AUTISM FRIGHTENS PARENTS more than almost any disorder, since it implies that the child can never function independently in society and may never fully reciprocate, or ever fully appreciate, expressions of love.
I think that this quote does more to reveal the bias of Dr. Sanghavi than any reality about autism parenting. I’ll admit that when I first heard the diagnosis “autism” when Nat was three, my heart stopped, and a part of my life closed in on itself. But looking back I think a lot of that was due to the lack of information available to me at the time, and the plethora of autism stereotypes, such as from the movie Rain Man. (Don’t get me wrong; I think Barry Levinson and Dustin Hoffman did a wonderful job in portraying a form of high-functioning autism, but what I did not know is that in this day and age a person with Ray’s abilities would probably not be institutionalized the way Ray was.
When I first got the diagnosis, I hastened to the library, only to find the very dry and hopeless DSM (Diagnostic-Statistical Manual, used by doctors to diagnose) and wanted to slash my wrists. Luckily for me, I also found the wonderful Sean and Judy Barron’s There’s a Boy in Here, in which Judy decides for herself what is what about autism, and plows ahead to help her son in the face of the prevailing theory at the time, which placed the blame on her, the mother.
What we need is more honest and positive accounts of living with autism. Parents need facts that help them strategize and advocate for their kids, not horror stories and hopelessness. They need hugs and encouragement. Autism need not be a death sentence. Our children were not stolen; we just have to look a bit harder to see them.