The Problem with Autism Speaks

[KDCat]

I am very familiar with the controversy over Autism Speaks. It's quite a bit like the controversy over Jerry Lewis and his fundraising for MDA.

The criticism that Autism Speaks puts too much emphasis on "disease" and "disorder" rather than "difference" has some merit. At the higher functioning end, ASDs really are a difference, rather than a disease or disorder.

At the low functioning end, though, these are debilitating conditions. "Difference' doesn't really cover it when you are still changing diapers for a 13 year old that will never speak or potty train. Those people can't talk about whether their condition is a difference, rather than a disorder or a disease.

Autism Speaks does a ton of good. They provide solid guidance on treatments, interventions and therapies. They lobby for research money. It's an activist group. They never intended to be primarily a group that works directly with families.

The small amount of work that they do for families is gold, though. They distribute a 100 Day kit to parents of newly diagnosed kids that is worth it's weight in gold. It includes instructions on what to do after the DX and an explanation of therapy options. They maintain a database of resources across the US that families can use. They raise awareness.

[amIblue?]

Autism has such a vast spectrum that I'm not going to criticize any group that is sincerely trying to help. Just in my own narrow experience, a dear friend has a sister with Aspergers, and she fits the "different" paradigm. She's highly intelligent, holds down a job, but she did have to be taught some things that most people just instinctively know. On the other hand, I have another dear friend who has two sons at the low end of the spectrum, who will never be able to live on their own, care for themselves, or really much of anything. I don't know if even their loving mother would consider their condition as merely being different in the same way the woman with Aspergers is. Their care does involve the diapering of teenagers and helping them to eat. I wouldnt wish that kind of life condition on anyone.

I think if there's a way that the lower end of the spectrum can be prevented, then science should work to find it. That is in no way, shape, or form intended as criticism of the Temple Grandins of the world or a lack of appreciation for their contributions.