Spectrum Magazine Series - Untold Stories of Autistic Adults

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Joined: 25 Aug 2013
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17 May 2017, 1:03 am


This is a series of articles discussing varoius autism issues writtten by autistics and the people who study us.

Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person. - Sara Luterman

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18 May 2017, 4:01 am

I was particularly interested in this part:

https://spectrumnews.org/opinion/viewpo ... ts-autism/

The frustrating search for medical care that is truly in the best interests of patient's needs is (still), in my opinion, a dangerous and damaging minefield for both diagnosed and undiagnosed adults on the spectrum. Last night I was reading a piece called "Barriers to Effective Medical Care for Autistic Adults" which was published by Lynne Soraya in her blog "Aspergers Diary". She describes revealing encounters with doctors as "a social nightmare" and contrasts AS responses with what are the expected responses in a neurotypical medical setting, where patients are expected to report symptoms in a certain way with a certain kind of language. But many AS people are so stressed in medical environments that they don't match these expectations, and are labelled in demeaning ways for their failure to conform to NT norms.

Personally I believe this issue is huge for the AS community, and endangers their quality of care; and we are treated as if these poor outcomes are our fault, not a flaw in an imperfect system that is norm-based on neurotypical behaviour.

If the failure to provide good care for autistic adults is as flawed as I tend to believe it is, then that may be a variable which affects the high suicide rates and lifespans of many on the spectrum. I don't have much energy left anymore, though today I went to discuss this with a doctor I know, and asked him to consider the issues and contribute (if he wishes) to a plan to raise awareness. I think it is time that medical schools did their part in training doctors to better hear and respect AS people, to recognise the difficulties of communication, and how the status quo is not serving the AS population. If energy allows, I plan a blog on this and to approach the local medical school later on with a view to making some presentations. It's a small start, but it is a start.