I think the American Psychiatric Association’s decision to
eliminate Asperger’s Syndrome from the new DSM is not very smart and I’m not
sure what their motivation is. It can’t be based on seeing people like me and
seeing people with Asperger’s as identical in terms of symptoms. In a spectrum,
I’d assume we’d be the same, just milder or more severe versions of each other.
But it isn’t exactly that.
I think rather than lump everyone together under one big,
fat label, the psychiatrists at the APA should try to notice how many
differences there are in the symptoms. It is frustrating to me to need to show
them the obvious, but researchers, in my opinion, seldom pay attention to
non-verbal autistic people. Even when those non-verbal people who can
communicate by typing describe physical symptoms different than Asperger’s
Syndrome, many researchers look to Temple Grandin and others, not to Tito, or
Carly Fleischmann, or me, or other non-verbal people who type to explain our
experience of autism.
Let me help the APA.
Temple Grandin
*Independently drives, rides horses, shops, cooks, etc.
*Lives alone.
*Initiates actions throughout her day.
*Excellent fine motor control. Able to use hands to graph
detailed engineering projects.
*Talks.
*Has difficulty interpreting people’s behavior.
Ido Kedar
*The opposite.
To make it clear, I have no difficulty understanding human
behavior, but my brain and body are not working well together. In common, both
of us have sensitive sensory systems, poor eye contact and shyness. But, people with asthma, and people with
heart disease, and some people with cancer all may experience shortness of
breath but that doesn’t give them a Breathless Spectrum Disorder.
I think researchers might want to look at the big
differences in symptoms and adjust their diagnoses to fit, rather than
squeezing everything on a continuum that may actually be different conditions.
I'm reminded of one of my favorite quotes by CS Lewis: You cannot study men. You can only get to know them.
ReplyDeleteYes, there are obvious generalities but in the end, it's the individual that needs to be known.
Agree. We'd be a lot farther along if autistic people were doing the research. (And community participatory research collaborations such as AASPIRE do exisit.) Nothing About Us Without Us.
ReplyDeleteJust as autism is a spectrum I'd say people with aspergers have ah hard time talking I know I do and I can relate to your posts and feelings a lot just because someone is considered high functioning doesn't mean they don't struggle with the same stuff this is why the labels are useless I believe!
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