Susan's Blog

Monday, December 5, 2005

The Mythical Autism Beast

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.

5 comments

You took my breath away with this comment

“Autism need not be a death sentence. Our children were not stolen; we just have to look a bit harder to see them.”

I have a 4 year old who was diagnosed last year. I’m still reeling from the diagnosis, but I am so hopeful for him. Most days it feels like I’m swimming against the tide.

Thank you for sharing your family and your insight!

-Another Massachusetts Mama

— added by Anonymous on Monday, December 5, 2005 at 5:46 pm

Thanks, Massachusetts Mama —
There always is hope. Nat did not have his first playdate (willingly) until he was 15. Better late than never!

— added by Susan Senator on Monday, December 5, 2005 at 5:51 pm

Susan:

You are absolutely right about the needless hopeless that is inflicted on parents because of lack of information about Autism. Disabilities, including Autism, have had some stigma to it so brought about silent suffering. The result of not sharing what we experience is that parents do experience hopelessness. I recently made the decision to be upfront on my blog even if it impacts my book because I think that we help each other most when we share what we are going through.

— added by Peggy Lou Morgan on Wednesday, December 7, 2005 at 7:02 pm

Hi Susan,

I agree with everything you have written in this post. I have a three year old with Autism and I have been learning to “look harder to see him” more everyday.

— added by Eileen on Thursday, December 8, 2005 at 6:38 pm

It’s painful to me to see people refer to their kids as “flawed” or “damaged”–what could be truer than the sound of my son Charlie asking “I want turn on! I need help”?

Hardly a changeling stolen from us.

— added by kristina on Friday, December 9, 2005 at 8:23 am

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