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.