Tuesday, June 26, 2012

Epidemic? Gee, Thanks

For quite some time Autism Speaks and various other organizations have been using the phrase "Autism Epidemic" to describe the rise in autism diagnosis. I am really fed up with it. The term isn't even accurate:
Definition from Wiktionary: epidemic
1 A widespread disease that affects many individuals in a population.
2 An occurrence of a disease or disorder in a population at a frequency higher than that expected in a given time period.
Perhaps the second definition is closer- but it implies that it is a contagious disease- talk about insulting!
To them, I am part of a plague, a expensive and emotional burden on my family and society. I have no gifts or talents to offer the world, and my birth should never have happened.

Here is a quote from their website:
More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined
Autism costs the nation $137 billion per year
Autism receives less than 5% of the research funding of many less prevalent childhood diseases
Autism is the fastest-growing serious developmental disability in the U.S.

Autism Speaks will do anything for sensationalist media attention, and they have raised millions of dollars through this approach. It never occurs to them (or perhaps they just don't care) that people with autism/autistics have their own voices and opinions. They speak for parents and professionals, not for us. Most other disability organizations are at least in part run by people with those disabilities. The autism community developed differently as early on, most individuals labeled autistic were children with more difficulty with communication. Twenty years ago, when I was labeled, Asperger's Syndrome was considered quite rare. Now it is far more common, even more than classic Kanner's autism. And many of us are adults. So Autism Speaks and other organizations need to catch up with this reality.

Another problem I have with them is that they focus almost exclusively on young children. While early identification and intervention are certainly important, what about improving the lives of older people with autism? Those children won't have much of a future if we don't build better opportunities for employment, education beyond K-12, housing, and social and in-home supports (if needed) They focus on research- and I wonder what kind of research? To learn how to better help people with autism with their difficulties (sensory, social etc) It seems mostly a search for causes of autism. I am worried this will result in selective abortion and eugenics.
More on that in another post.

Please write to Autism Speaks and other organizations that use this sort of language, and ask them to stop. What will young people with autism (or older people just diagnosed) think when they hear these messages? Don't we want them to feel good about themselves and who they are? Telling them they are inferior and diseased won't do that.

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