Basically, he clearly outlines a lot of the issues that make being an adult with autism complicated. When should we try to change the way kids with autism do things? When do we stop doing that and start accepting them as full adult contributors? It’s not like we have this down pat with typical kids either, but the issue is pretty muddled when it comes to autism or other different kinds of minds.
Anyway, the article is great, and I was so pleased to read something intelligent that echoes my own beliefs.
The Inter-Agency Autism Coordinating Committee (IACC), a committee that includes the Center for Disease Control, the Federal Drug Administration, the National Institute of Health, Medicaid, National Health and Human Services etc–Full list and links here) is having a strategic planning meeting shortly. It would have been held today, but Hurricane Sandy has disrupted their plans–and a lot of people’s lives.
The planning meeting will cover the current strategic plan, and you can email your suggestions to them!
You wish there was better assistance for adults on the spectrum? You want more early intervention? Better diagnostics? You just want to be left alone?
Email them and let them know!
Less than a third of adults with autism have regular employment. There is a range of statistics regarding the exact rate (here and here and here), but whether the unemployment rate is 68% or 93%, it seems that many people who could potentially work are not working.
There are a lot more kids with an autism diagnosis than adults (because we recognize and diagnose it more now than we did 15 years ago), and many of these kids receive some kind of special services in school and/or in the community. However, most of those services end after high school.
As a society, we should want kids to be able to work, so that our tax dollars do not have to pay for them in the form of unemployment, prison, and institutional support.
The issue is: We don’t actually know how to help people become employable. We have some ideas, but we have a pitiful amount of research in this area.
The largest support program for helping people with autism find work is Vocational Rehabilitation Services (usually known as VR). It is federally funded, and operated on a state level. In 2006, 3,397 people with autism were served by VR.
According to Autism Speaks, 500,000 kids with autism will become adults in the next decade.
Currently, it costs VR about $30,ooo per year to support a person with autism at work. For every dollar a person with autism makes in this program, it costs VR about $25. This study says more.
It doesn’t seem like we can afford to support 500,000 more people in this way.
What can we do? Here are a few resources from others:
A good collection of stats and ideas from Scott Standifer
The proposed changes for the DSM V have been in the works for a very long time. In fact, I wrote about them in 2009.
and some people (read: me) say that ’scientific definitions’ are ever-changing as the depth of our understanding is ever changing. The danger is claiming each new degree of awareness as the absolute final word.
Last night, in the first Presidential debate 2012, Barack Obama mentioned autism. He said something along the lines of, “families with an autistic child depend on Medicaid”. Which is true. I was encouraged that autism got a little mention in such a public venue…but my twitterfeed and timeline were chock full of people huffily correcting the president, not on the strength of his statement, or the truth of it, but on his phrasing.
Technically, the (current) politically correct term is ‘child with autism’, which exemplifies ‘person-first language’, a rule of thumb that always puts the person in the primary position of the phrase (i.e person who uses a wheelchair instead of ‘wheelchair bound’).
I see the point of person first language, just like I see the point of being careful about how we phrase gender things and race things. To me, the point of careful phrasing is to guide how we are supposed to THINK about abilities/gender/race in a better way, collectively. Correct phrasing is an ongoing prompt to transcend whatever prejudices I harbor.
It is a practice that everyone fails at sometimes. If we simple reduce ‘politically correct’ to another political pitfall then we have lost the point, the only good point, of a practice that becomes more like witch hunt every day.