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Mona Pereth
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12 Aug 2019, 11:26 pm

carlos55 wrote:
the vocal more functional minority who identify with their disorder take great offence when the word treatment / cure gets used

Regarding the "cure" issue, see my post here in the thread Torn between being pro and anti-neurodiversity.

Regarding "the vocal more functional minority":

As far as I can tell, most of the founders of the neurodiversity / autistic rights movement, and a significant fraction of today's leaders, are people who were severely disabled as children, but then became "high-functioning" (as they were then called) as adults. For example, Jim Sinclair, the founder of Autism Network International back in the 1990's, didn't learn to talk until he was 12. Thus they saw things from both a perspective of being severely disabled and a perspective of being "high-functioning." This dual perspective is still reflected in ASAN's stance, as detailed in ASPartOfMe's post:

ASPartOfMe wrote:
That said I am so sick and tired of hearing that the ND movement is an ableist movement by and for Aspies only. ASAN has lobbied against the use of electric shocks at the Judge Rotenburg Center, lobbied against paying subminimum wages to the disabled, lobbied against sympathetic treatment of parents who murder their autistic children. The people that are being lobbied for in all three cases are not “shiny aspies” but “low functioning”.

Now, here's a really sad thing to consider:

One would think that it ought to be a very high priority for autism researchers to conduct detailed interviews with people like Jim Sinclair and their parents, to determine what these parents did right, to help their severely disabled autistic children become "high functioning" and be able to go to college and in some cases grad school.

As far as I am aware, this has never yet been done in any wide-ranging, systematic way. Of course, the insights potentially gleaned from such interviews would be only "anecdotal" and likely not applicable to all severely disabled autistic children. But, surely, many children and their parents could have been helped directly by this kind of research, and surely it could also have been an excellent first step in the development of better therapies and special ed methodologies for autistic children.

The above is an example of a very helpful kind of research that, as far as I am aware, has NOT been done, due to current research priorities favoring the search for a "cure."


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Archmage Arcane
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13 Aug 2019, 12:16 am

Mona Pereth wrote:
carlos55 wrote:
the vocal more functional minority who identify with their disorder take great offence when the word treatment / cure gets used

Regarding the "cure" issue, see my post here in the thread Torn between being pro and anti-neurodiversity.


Regarding "the vocal more functional minority":

As far as I can tell, most of the founders of the neurodiversity / autistic rights movement, and a significant fraction of today's leaders, are people who were severely disabled as children, but then became "high-functioning" (as they were then called) as adults. For example, Jim Sinclair, the founder of Autism Network International back in the 1990's, didn't learn to talk until he was 12. Thus they saw things from both a perspective of being severely disabled and a perspective of being "high-functioning." This dual perspective is still reflected in ASAN's stance, as detailed in ASPartOfMe's post:

ASPartOfMe wrote:
That said I am so sick and tired of hearing that the ND movement is an ableist movement by and for Aspies only. ASAN has lobbied against the use of electric shocks at the Judge Rotenburg Center, lobbied against paying subminimum wages to the disabled, lobbied against sympathetic treatment of parents who murder their autistic children. The people that are being lobbied for in all three cases are not “shiny aspies” but “low functioning”.

Now, here's a really sad thing to consider:

One would think that it ought to be a very high priority for autism researchers to conduct detailed interviews with people like Jim Sinclair and their parents, to determine what these parents did right, to help their severely disabled autistic children become "high functioning" and be able to go to college and in some cases grad school.

As far as I am aware, this has never yet been done in any wide-ranging, systematic way. Of course, the insights potentially gleaned from such interviews would be only "anecdotal" and likely not applicable to all severely disabled autistic children. But, surely, many children and their parents could have been helped directly by this kind of research, and surely it could also have been an excellent first step in the development of better therapies and special ed methodologies for autistic children.

The above is an example of a very helpful kind of research that, as far as I am aware, has NOT been done, due to current research priorities favoring the search for a "cure."



We're on the same page here. I was thinking along the same lines when I saw the previous two posts. It's only logical to find a way for low-functioning individuals to function at a higher level, rather than 'cure' the way their brains are wired. Instead of trying to get them to be NT, make the most of their neurodiversity.



Bravo5150
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13 Aug 2019, 6:56 am

As far as finding if a study has been done, have you tried contacting the CDC or nih to find out?



carlos55
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13 Aug 2019, 7:58 am

Just to clarify my main two objections with bringing identity politics into a neurological condition:

1. The name "diversity" can mean different things to different people which causes alot of confusion, neurodiversity is an idea rather than a centrally controlled direction so nobody has control of where its going. Most media articles / popular tv fiction in the last few years are basically repeating the same narrative "autism is a superpower" we dont want curring ( which could be interpreted as dont want treatment research). No reference is made to those on the severe end of the spectrum. The negative aspects of autism only refer to superficial social deficits.

2. When you create an identity it then becomes very difficult to act against it. Quite right too when it comes to the biological reasons why someone may be gay but for a medical disorder i do not think so. I dont believe there will be a cure for autism soon but there may be treatment / drugs that could improve lives and if medical research is blocked to stop potentially offending people then this becomes more unlikely.

2. Many aspie supremisists that get too much airtime in the media would like autism declared another version of human, as 99% of the NT population would see autism as an unwanted disorder / flawed version of human it would lead to a defacto genetic underclass that would be segregated, ignored and denied the same opportunities as NTs. So be careful of what you wish for.

Appologies for spelling mistakes i wrote this on my phone so no spellchecker.


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Bravo5150
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13 Aug 2019, 12:16 pm

ASPartOfMe wrote:
There are a number of factors I see

Many of the skills needed to form an effective movement such as networking, planning, involvement in large noisy demonstrations are not natural to many autistic people. Online is great but you need offline presence also.

Reflecting somewhat what is going on in the larger political world many autistics feel the neurodiversity movement are a bunch of elitists living in a bubble that think autism is only a gift. Related ASAN not responding is not new I used to contact them with news items I thought they should get involved with and I never heard back.

IMHO ASAN has gotten too wedded to the anti Trump resistance. This is problematic because at times ASAN has become just another group yelling about Trump and because as seen on this site many autistics are pro Trump or at least not down with “woke” politics, socialism etc. I understand Republican policies do effect autistics directly making it tough to figure out when to jump in. I used to post about what ASAN was saying and doing all the time. The sesame street thread was only the second time I started a ASAN thread this year. We as a neurodiversity movement probably got too tied up with ASAN. Most movements have several sometime contradictory organizations. The civil rights movement had MLK and Malcolm X, gays has the Mattachine Society and ACT UP.



I think too a lot of organizations seem to be about whether to swing left or swing right instead of trying to figure out how to appeal to both sides. They also seem to be confusing some other issues by adding in other agendas instead of only focusing on autism spectrum issues.



Mona Pereth
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14 Aug 2019, 3:02 am

Bravo5150 wrote:
As far as finding if a study has been done, have you tried contacting the CDC or nih to find out?

No. I would be very surprised if either the CDC or the NIH has an employee whose job it is to answer questions from random members of the general public about what kinds of research have been or haven't been done on any given topic X.

However, I've been reading lots of autism research news over the past year and a half, and I haven't come across any mention of the kind of research I think would be a good idea. Hence to me it seems likely that that kind of research either isn't being done at all or has low priority.

If you happen to know that I am wrong, I would appreciate it very much if you could let me know who is doing or has been doing the research in question, so I can look up their papers.


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Mona Pereth
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14 Aug 2019, 3:21 am

For some of my arguments against seeking a total "cure," see my post here in the thread Torn between being pro and anti-neurodiversity. See also my post here in the thread titled Case against ND movement’s brain wiring argument.


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Hollywood_Guy
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17 Aug 2019, 10:26 pm

What basic rights don't autistic people have?



Mona Pereth
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18 Aug 2019, 8:02 pm

Hollywood_Guy wrote:
What basic rights don't autistic people have?

"Basic" rights aren't the issue. Fortunately, a lot of "basic" rights have already been won for us by the larger disability rights movement. The problem is translating those abstract basic rights into concrete reality for autistic people.

For various specific issues, see the following pages on the ASAN website:

- Position Statements
- Action Alerts
- Reports and Brief Materials

See also numerous posts, primarily by ASPartOfMe, here in the "Autism Politics, Activism, and Media Representation" sub-forum of Wrong Planet.


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