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A minor more than a year ago, I wrote in this room about what autistic people want from science. The listing consisted of five products that addressed both deficits relevant to autism–sensory interventions and communication assistance–and quality-of-life aspects, like schooling, social attitudes about autistic folks, and housing and employment problems. As I noted in that submit:
What you won’t see on this listing are wishes for cure or prevention or identifying a cause, places where most autism research focuses. Though some members of the autistic community who did not respond in this (unscientific) survey have expressed a want for cure, the concepts of cure and prevention bother several autistic people. For these autistics, targeting cure and prevention implies that they need to be prevented or cured, rather than appreciated and acknowledged for what they have to contribute, speaking or not, as element of the neurological diversity of the human species.
Likely the ideal-recognized autism organization in the United States is Autism Speaks. They’ve not too long ago come underneath intense fire from several in the autism local community since of their institutional insistence on characterizing autism as a universal personal and parental burden — a monster out to steal kids and damage parental dreams — rather of as the developmental, neurobiological problem it is, one particular with a massive assortment of possible emergent properties since, nicely, packs of neurons and all that. Naturally, offered the current negativity about their organization from all corners of the autism local community, 1 might expect or at least hope for some evidence of contrition or the proffering of a freshly snapped olive branch.
However their ultimate salvos of the year present no hints of this kind of peacemaking. They’ve launched their record of 2013′s “Top Ten Advances in Autism Research,” established by their “science workers and scientific advisory committee.” The list provides us research involving early detection, prevention, genetics, “rare but genuine optimal outcomes,” epigenetics, a correlational discovering of GI concerns and autism that didn’t appear to inform us anything at all we did not currently know, and the inevitable mouse study that showed no results relevant to autism and social behaviors but may well hold prospective for OCD research. It is not surprising to me, but very little on this checklist comes shut to reflecting study that autistic men and women would like to see come into concentrate. It is not that this kind of function doesn’t exist. It does. It just didn’t make the list.
Ok, so it’s science. Genetics and epigenetics et al. constitute hot things, what qualifies as “sexy” in science. Jobs, skills of every day living, education, quality of life? About as sexy as dishwashing. So what about just a list of what autistic individuals may have to say? How did Autism Speaks do with that? Here’s their record of the “10 Inspiring and Informative Blogs of 2013.” What they really mean is blog posts, and their only measure of what’s informative and inspiring is … page hits (a.k.a. “popularity”). And the blog posts have been all hosted at Autism Speaks. Naturally, that means that autistic representation ran a minor quick, in spite of their promise that the listing consists of “Autism Speaks staff, mothers and fathers and advocates on the specturm (sic)” (underscore mine). As in, only one particular of the 10 featured posts seems to have been written by an autistic individual, a person who now occurs to not be significantly of a fan of Autism Speaks, both.
Selecting posts based on recognition is a cop-out, of program, a way to avoid ownership of identifying high quality and relevance. If I have been to use only that criterion for my posts, this 1 would be the top publish at The Science Consumer for 2013 (sigh). Rather than go that route, however, I’ll choose my top five posts from this room using a different criterion: How critical I want folks would find them. Here they are.
- Autistic Individuals Are More Likely To Keep Jobs When …
- Are Autism, Gut, GFCF, And Nervousness Connected?
- Is Being Female Protective Against Autism?
- If A Parent Murders An Autistic Child, Who Is To Blame?
- Exactly where Are All Of The Older Autistic Men and women?
Satisfied new yr. Here’s hoping the new 12 months brings some amelioration of the actual deficit of the autism community: a failure to communicate … and to pay attention. Isn’t it time?
Autism 2013: Communication Breakdown
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