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.

Friday, June 1, 2012

Adults with Autism & Employment Study

A study on employment and adults with autism just came out in May. This is specifically about young adults, though I have some thoughts on the subject more broadly.

What I found especially interesting was that adults with other developmental disabilities (e.g. some degree of mental retardation) have a higher rate of employment.  That made some sense to me, as there does seem to be more services set up for people with Down's Syndrome and other such conditions. Also society as a whole may better understand these disabilities. Autism is more difficult to wrap one's head around.

Since I have a degree in political science, I've been trained to be skeptical of statistics. How did they get these numbers? What methods did they use?
First off, the unemployment rate in general only includes people applying for unemployment benefits or report looking for work.  People who have given up or taken a major break in job searching aren't included- that would describe many people with disabilities.

Other factors: many adults on the spectrum especially past 35 or so, are unlabeled. In fact, probably most of them. Some of them fall under the radar, as they may have better adjusted to mainstream society, or maybe dropped out of high school, or are homeless or move frequently due to poverty.