A Challenge To Autism Researchers
Autism Research: Is This The Best We Can Do?
Posted November 19, 2009
Autism research. Having a vested interest, I watch it closely. But looking at the latest batch of "newsworthy" releases -- I find myself frustrated. Is this the best we can do?
The latest to get the lion's share of attention, is the Kennedy Krieger Institute study documented in the latest issue of Neurology, which tells us that there is a correlation between autism spectrum disorders and difficulties with handwriting. Why is this news? Parents of autistic kids, and adults with ASD have been saying this for years.
If you search in spectrum related bulletin boards, you'll find adults with autism and Asperger's have themselves dissected this ad nauseum. They've taken polls on it ("How Legible is Your Handwriting?"). They've discussed how their handwriting is different than their peers ("Odd Handwriting"), even going so far as to upload videos of themselves writing, as examples. They've solicited groups of other spectrum peers to upload pictures of their handwriting for comparison "Post Your Handwriting!" And this is on just one bulletin board.
In a comment on another autism blog, a commenter responded to the study:
"All I can say is Duh! I'm not sure what the purpose of this study was. I guess I have to read the entire study but it seemed a waste of time. Its like doing a study about 'is the grass green.' Hasn't it been known for decades that autistic children have problems with handwriting?"
The NPR article quotes a parent of one of the participants, saying:
"The finding offers scientific evidence of something parents have been saying for years, says Barbara Wagner, whose son Austin, 14, was one of the children on the autism spectrum who took part in the study."
Even while reporting it, they say it's old news. I'm afraid I just don't get it. What's the big deal?
Reading this, you may wonder at my frustrations. Why do I make such a big deal of this? So, the autism community has said this before...so what? Now you have "proof." Aren't you better off than before?
I'll tell you why it's a big deal to me. It means that the media and researchers aren't listening. Not to autistics, not to parents. I don't need a researcher to tell me that my handwriting is atrocious...that's obvious, and absolutely no shock.
There is a world of autistic people out there eager to share their experiences with the world. To understand why they have synesthesia, or prosopagnosia. Why they they have trouble with speech. Why they struggle to make friends and have jobs. Why life sometimes feels so hard.
There is a world of parents out there, eager to share their experiences - and desperate to understand their children. Why won't he look at me? Why doesn't he sleep through the night? Why can't he speak to me? Why does he seem to be in pain so much of the time? How can I help him?
The information is out there...but it seems they are just not listening. While the media and experts are patting themselves on the back over "discovering" a new bit of information about autism, there are kids out there struggling. There are adults like me, frustrated. Wanting to learn about why we are the way we are - but left out in the cold.
Autism should not be a researcher's "pet project." Autistic people should not be used as a pawn to prove someone's theory about how "normal people" see and interpret the world. And, it might be worthwhile, every now and again, to ask a person on the spectrum before pronouncing opinions, or posting speculations about us -- how we think, or why we do things. Some of us do speak...and we can tell you.
We might just have a perspective that you might not have thought of...and we are the ones who have to live with the results if you're wrong. If you want to know what research matters, ask a person with autism. Ask a parent. Ask a professional that works with us every day. Ask someone who knows. We'll tell you.
And whatever priorities we might have -- I think you'll find a common theme:
Tell us something we don't know.