The autistic rights movement and severely disabled autistic people -- some history

Mona_PerethMona_Pereth Citizen
edited February 22 in Advocacy
It is often said, by people leery of the neurodiversity paradigm, that autistic rights activists have very little in common with the most severely disables autistic people.

I agree that the majority of people identified as autistic today  (including myself) have very little in common with the most severely disables autistic people.

But this was not always the case.

In the earliest days of the autistic rights movement, around 1990, "Asperger's syndrome" was only beginning to be recognized as a thing.  And "autism" diagnoses were reserved for severely disabled children.

Hence, most of the leading figures of the early autistic rights movement were NOT Aspies, but instead were people who had been, or at least appeared to have been, severely disabled as children, but eventually learned to talk (or in some cases to communicate by typing) and eventually went to college.  The best-known such figure is Temple Grandin.  Another is Jim Sinclair, who didn't start talking until age 12.

These people had the kinds of childhood memories that could give great insights to parents of severely disabled autistic children.  And many parents appreciated them for their insights.

The autistic rights movement was founded by several such autistic people who had been speakers at autism conferences, and  who then decided they wanted to be more than just "self-narrating zoo exhibits."  For details, see Autism Network International:  The Development of a Community and its Culture by Jim Sinclair, January 2005.

Most of us today do not have such memories.

In my opinion, those autistic people who do have clear childhood memories of what it was like to be severely disabled, but who grew up to attain average or above-average intellectual development,  should be sought out by autism researchers as a source of insights into possible new ways to maximize the intellectual and social development of severely disabled autistic children.  To me it's very sad that they are not (as far as I am aware) currently being sought out by researchers for this purpose.

Anyhow, the experiences of people like Jim Sinclair, who were the majority of leaders of the early autistic rights movement, are what led to the ideal of a single unified autistic community encompassing people of all ability levels.

The tradition begun by Autism Network International continues to be carried on, today, by annual conferences like Autscape in the U.K., and by organizations like ASAN (Autistic Self Advocacy Network) here in the U.S.A.


Comments

  • This would be excellent, indeed.

    I'd also like to see less attention towards those awful "autism parents" treating their kids as sideshow freaks  
  • I could be described as a 'severely disabled person', but not a 'severely disabled autistic person'    I think the autistic rights movement minus its more fundamentalist/puritanical  elements can be a force for progress.
  • I could be described as a 'severely disabled person', but not a 'severely disabled autistic person'    I think the autistic rights movement minus its more fundamentalist/puritanical  elements can be a force for progress.

    Who/what are you referring to as its more fundamentalist/puritanical  elements?
  • Bender said:
    This would be excellent, indeed.

    What are you referring to as "this"?

    Are you referring to my statement that "those autistic people who do have clear childhood memories of what it was like to be severely disabled, but who grew up to attain average or above-average intellectual development,  should be sought out by autism researchers as a source of insights into possible new ways to maximize the intellectual and social development of severely disabled autistic children."

    Or are you referring to something else I said?

  • Bender said:
    This would be excellent, indeed.

    What are you referring to as "this"?

    Are you referring to my statement that "those autistic people who do have clear childhood memories of what it was like to be severely disabled, but who grew up to attain average or above-average intellectual development,  should be sought out by autism researchers as a source of insights into possible new ways to maximize the intellectual and social development of severely disabled autistic children."

    Or are you referring to something else I said?

    I was referring to that exact part, sorry for being unclear.
  • AmityAmity Administrator, Citizen
    I think its important to trace where modern perceptions of disability come from, reading this thread reminded me of a 'rabbit hole" I fell down a few weeks ago.

    Its my understanding that in pre industrialised society people with disabilities/disabled people were seen as a common part of their communities, not excluded, nor helped, but left to get on with it themselves.

    With industrial growth more people were maimed in workplace accidents, Victorian morality stepped in with institutionalisation as a means of caring for the 'unfortunate' and essentially started the medical model we have today.

    Being able bodied with a strong masculine physicality was required to complete the work and being less than able bodied became linked to a flaw in the persons nature, a sign of their failed morality.

    The initial Victorian intentions may have been kind or moral, maybe groundbreaking for the era, but long term the removal of people from their communities led to the fear of the unknown and  associated prejudice.

    I feel quite strongly about segregation of any kind, I don't think it leads to good outcomes for the wider community, where there are divisions there is a conflict of interest, 'if what you are doing doesnt work, do something different' and not the insanity of repeating the same actions hoping for a better outcome.

    Yet the spectrum is so varied, how each of us experience it is different on many levels. We will all need care and support, some of us earlier and others as we age, if that care can be tailored to accommodate autonomy/individual autistic needs then perhaps having that as a focus, along with employment (to support independent living) could be a common goal for a broad range of people.
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