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Mona Pereth
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06 Aug 2019, 11:54 pm

As far as I can tell from what I've learned about the history of the autistic rights movement, it seems to have started in the 1990's, then had a burst of energy and very effective organizing during 2005 to 2015 or so, but it now seems to be stagnating and falling apart.

Looking at the website of the Autistic Self-Advocacy Network (ASAN), it now lists a lot fewer local affiliates than it had when I first looked at it over a year ago.

In particular, Autistic Self-Advocates of New York City is no longer an ASAN affiliate and doesn't seem to be doing much if anything anymore, as far as I can tell. I've never been able to attend a meeting of theirs, nor even to get in touch with them, though I would really have liked to. Nor, as far as I can tell, does ASANYC seem to have much if any connection with the larger autistic community here in NYC, at least not on a grassroots level. For example, during the entire past 15 months or so that I've been attending support groups, I have never seen an ASANYC member attend and make announcements.

So, it's no surprise to me that the autistic community has lost some of the progress that we've previously gained, e.g. ASAN Has Ended Partnership With Sesame Street, discussed in this Wrong Planet thread here.

There do exist some small cliques of autistic and autistic-friendly psychotherapists, social workers, and other autism professionals. At least some of these do excellent work for their clients, and at least some of them make excellent public statements. Examples of well-known autistic autism professionals here in the NYC area include Dena Gassner and Dr. Stephen Shore. Examples of non-autistic but autistic-friendly autism professionals around here include Dr. Katherine Cody and Pat Schissel, who heads AANE-NY, formerly the Aspergers and High Functioning Autism Association, now merged with the New England-based Asperger/Autism Network (AANE).

AANE and a few similar organizations elsewhere offer some great services, including support groups, and some great public spokespeople.

But we need a lot more than just professional services and professional spokespeople. We need a much bigger and better-organized independent (i.e. not just professional-led) grassroots autistic community/subculture than now exists.

Every successful minority-rights movement has roots in a much larger organized community/subculture. For example, the black civil rights movement of the early 1960's was rooted in the black churches and still draws a lot of its support from the black churches and other religious organizations. Similarly the LGBT rights movement is rooted in a much larger, very well-organized LGBT community.

In any such community, the activists are few and far between, and can be effective only by serving as the tip of a much larger, well-organized iceberg.

We don't have anything even remotely like the iceberg we need. Of course, that's partly due to our social and other impairments. So, we won't be able to build our iceberg all by ourselves; we'll need some help from sympathetic NT relatives of some of us, and we'll need some help from sympathetic professionals. But we do need at least 50% of the leadership to consist of autistic people if at all possible.

We need our hopefully forthcoming iceberg to be useful to us in the short run as well as in the long run. So, what do we need it to consist of? Among other kinds of groups, I think we need:

1) Local in-person support groups in as many locales as possible, including BOTH (a) professional-led support groups, and (b) peer-led self-help/support groups. The two kinds of support groups are both important and serve different purposes.

2) Groups of autistic people who work in, or desire to work in, particular categories of professions/occupations. These groups would ideally hold meetings both in-person and online, and would include both local groups and larger networks. The growth of such groups would, hopefully, make it easier for many more Autistic-friendly workplaces to come into existence.

3) Specialized support/self-help groups, either in-person or online, for autistic people with particular co-occurring conditions. In particular, I think there's probably a need for addiction recovery groups, because lots of autistic people do get addicted to drugs and/or alcohol; and, as far as I can tell, the psychological aspects of addition may be a bit different between autistic and non-autistic people.

4) Specialized self-help groups that teach themselves (e.g. using printouts of web-based tutorials) what I call Autistic-friendly social skills and also the leadership skills needed to run the other kinds of groups I mentioned above.

5) Websites that aid in the formation of all the kinds of groups listed above, and that help autistic people make friends with other autistic people in their local areas.

6) More conferences similar to Autscape and the Autistic Self Advocacy Summit, in more locales.


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07 Aug 2019, 5:08 am

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.


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Magna
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07 Aug 2019, 6:37 am

ASPartOfMe wrote:
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.


Wow, I'm not the only one that's thought the same thing about ASAN. I'm very glad that ASAN is out there as better alternative to Autism Speaks, but I felt exactly the same way in that I was let down by seeing ASAN go hyper-political against Kavanaugh. To be clear, I myself am not a pro-Kavanaugh person. My issue with ASAN going "all in" against his appointment is that I'm not at this point convinced that Kavanaugh is who he portrayed himself to be (conservative) and if it turns out that he's not, ASAN will have been duped. Again, I'm glad ASAN is out there, but I'm with ASPartOfMe 100% on that.

I like your post, Mona, because I think the time is coming with all of the kids diagnosed today (like 1 in 45 or something now in my state) where Autism Rights will hopefully have more "feet on the ground" than in years past.

I think one problem that the Civil Rights Movement may not have had (I'm not an historical expert on that subject) is that I don't believe there was a national black civil rights group claiming to represent the rights of blacks but in reality was working against them like there is with autism (Autism Speaks). How would the Civil Rights Movement have fared if at that time there was an organization, the largest of its kind in the nation, that would have told the world that the world should find a "cure" for blacks and that the organization prided itself on supporting practitioners who advocate for teaching blacks to be less black? You get the idea.

With this in mind perhaps the Autisic Rights Movement will have to maintain a counter-culture status (Counter to Autism Speaks) and always "swim against the current" as hard as that would be. Or...perhaps a reverse of the Sesame Street situation could happen where the right people 'take over' Autism Speaks and that organization actually works to serve as a vehicle for the true advancement of Autism Rights and awareness.


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07 Aug 2019, 10:05 am

Magna wrote:
ASPartOfMe wrote:
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.


Wow, I'm not the only one that's thought the same thing about ASAN. I'm very glad that ASAN is out there as better alternative to Autism Speaks, but I felt exactly the same way in that I was let down by seeing ASAN go hyper-political against Kavanaugh. To be clear, I myself am not a pro-Kavanaugh person. My issue with ASAN going "all in" against his appointment is that I'm not at this point convinced that Kavanaugh is who he portrayed himself to be (conservative) and if it turns out that he's not, ASAN will have been duped. Again, I'm glad ASAN is out there, but I'm with ASPartOfMe 100% on that.

This change started with the change in leadership at ASAN from Ari Ne’eman to Julia Bascom which occurred concurrently with Trump’s inauguration. It has been far from only Kavanaugh where they have sounded like just another resistance group. What I like about their Sesame Street message is the issue is specifically related to Autism.


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07 Aug 2019, 10:58 am

ASPartOfMe wrote:
Magna wrote:
ASPartOfMe wrote:
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.


Wow, I'm not the only one that's thought the same thing about ASAN. I'm very glad that ASAN is out there as better alternative to Autism Speaks, but I felt exactly the same way in that I was let down by seeing ASAN go hyper-political against Kavanaugh. To be clear, I myself am not a pro-Kavanaugh person. My issue with ASAN going "all in" against his appointment is that I'm not at this point convinced that Kavanaugh is who he portrayed himself to be (conservative) and if it turns out that he's not, ASAN will have been duped. Again, I'm glad ASAN is out there, but I'm with ASPartOfMe 100% on that.

This change started with the change in leadership at ASAN from Ari Ne’eman to Julia Bascom which occurred concurrently with Trump’s inauguration. It has been far from only Kavanaugh where they have sounded like just another resistance group. What I like about their Sesame Street message is the issue is specifically related to Autism.


I haven't met Bascom, but have visited ASAN's headquarters in DC. It's tiny and they only have about 6 or 7 people working there full-time, and about half of them gave off massive SJW vibes (I'm a leftist/progressive but those types still annoy the hell out of me). Bascom was not there when I visited, though we have exchanged emails, and she seemed nice through that. Ari on the other hand I have met in person a couple times; he now works for the ACLU and one of his most recent projects is campaigning for the Keeping All Students Safe Act. He's honestly one of the best things to ever happen to the Autistic rights movement, I've never met anyone before who cares so deeply about autistic rights, and he's also an amazingly eloquent speaker. I wish he was still leading ASAN.

Mona, you should seriously consider applying for Bascom's position when she retires. Very few people, autistic or otherwise, have the insight and dedication that you have on things like this.


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Last edited by Zakatar on 07 Aug 2019, 11:08 am, edited 1 time in total.

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07 Aug 2019, 11:04 am

Groups forming schemes and assembling to force their will on others is really uncomfortable for me. I would much rather see all the other group rights movements fall apart and have all people just be equal... When a law/rule goes in the books to favor one group due to a previous disadvantage, the rule never goes away and they have a permanent advantage until that governing body collapses.



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07 Aug 2019, 11:28 am

WHAT "Autistic Rights Movement"?

:roll:


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07 Aug 2019, 8:08 pm

Roboto wrote:
Groups forming schemes and assembling to force their will on others is really uncomfortable for me. I would much rather see all the other group rights movements fall apart and have all people just be equal... When a law/rule goes in the books to favor one group due to a previous disadvantage, the rule never goes away and they have a permanent advantage until that governing body collapses.

Favoring one group over another is bad. Working towered your group having the same rights as most others when they don't
is a good thing.


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Mona Pereth
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07 Aug 2019, 9:44 pm

Roboto wrote:
Groups forming schemes and assembling to force their will on others is really uncomfortable for me. I would much rather see all the other group rights movements fall apart and have all people just be equal...

Sorry, things just don't happen that way. For example, without the black civil rights movement of the 1960's, we'd still have old-fashioned racial segregation, and if the current black civil rights movement were to fall apart, things would backslide bigtime. The black civil rights movement is far from perfect and it sometimes says and does counterproductive things, but, overall, black people are certainly better off with it than without it.

The only way a highly stigmatized minority ever attains rights is via an organized movement. Equality doesn't just happen. It would sure be nice if equality could just happen, but, alas, it just doesn't.

Roboto wrote:
When a law/rule goes in the books to favor one group due to a previous disadvantage, the rule never goes away and they have a permanent advantage until that governing body collapses.

Not necessarily. At some point I could provide counterexamples, but that's a discussion more appropriate for PPR.


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Mona Pereth
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07 Aug 2019, 9:58 pm

Zakatar wrote:
I haven't met Bascom, but have visited ASAN's headquarters in DC. It's tiny and they only have about 6 or 7 people working there full-time, and about half of them gave off massive SJW vibes (I'm a leftist/progressive but those types still annoy the hell out of me). Bascom was not there when I visited, though we have exchanged emails, and she seemed nice through that. Ari on the other hand I have met in person a couple times; he now works for the ACLU and one of his most recent projects is campaigning for the Keeping All Students Safe Act. He's honestly one of the best things to ever happen to the Autistic rights movement, I've never met anyone before who cares so deeply about autistic rights, and he's also an amazingly eloquent speaker. I wish he was still leading ASAN.

Mona, you should seriously consider applying for Bascom's position when she retires. Very few people, autistic or otherwise, have the insight and dedication that you have on things like this.

Thanks for your appreciative remarks. However, ASAN is obviously not going to let a complete stranger like me take over their organization.

Anyhow, at this point I'm more interested in doing what I can to help build the underlying community than I am in running an activist group, because I don't believe that an activist group can flourish for very long without a larger community supporting it.


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09 Aug 2019, 11:08 am

Mona Pereth wrote:
The only way a highly stigmatized minority ever attains rights is via an organized movement. Equality doesn't just happen. It would sure be nice if equality could just happen, but, alas, it just doesn't.


Exactly.


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Roboto
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09 Aug 2019, 11:28 am

ASPartOfMe wrote:
Roboto wrote:
Groups forming schemes and assembling to force their will on others is really uncomfortable for me. I would much rather see all the other group rights movements fall apart and have all people just be equal... When a law/rule goes in the books to favor one group due to a previous disadvantage, the rule never goes away and they have a permanent advantage until that governing body collapses.

Favoring one group over another is bad. Working towered your group having the same rights as most others when they don't
is a good thing.


If you've ever tried to fire someone in a "protected class" you'd understand where I'm coming from. Many of the laws force people to treat different groups of people different which is nothing more than enforced racism.

I'm unclear what rights (I would use the word privileges personally, but that's the aspie in me I guess) autistic people don't have that others do?

I'm dead serious that having to treat different races and orientations of people differently is something that tugs at my aspie side to an enormous degree. The only "right" that I think I need to be accommodated is to be able to treat everyone equally.



Last edited by Roboto on 09 Aug 2019, 11:35 am, edited 1 time in total.

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09 Aug 2019, 11:31 am

Fnord wrote:
WHAT "Autistic Rights Movement"?

:roll:


I'm confused there too. What rights don't I have that everyone else does?

"Self Avdocacy" implies a lack of a "movement" and that people need to avcocate for THEMSELVES



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09 Aug 2019, 2:01 pm

Roboto wrote:
ASPartOfMe wrote:
Roboto wrote:
Groups forming schemes and assembling to force their will on others is really uncomfortable for me. I would much rather see all the other group rights movements fall apart and have all people just be equal... When a law/rule goes in the books to favor one group due to a previous disadvantage, the rule never goes away and they have a permanent advantage until that governing body collapses.

Favoring one group over another is bad. Working towered your group having the same rights as most others when they don't
is a good thing.


If you've ever tried to fire someone in a "protected class" you'd understand where I'm coming from. Many of the laws force people to treat different groups of people different which is nothing more than enforced racism.

I'm unclear what rights (I would use the word privileges personally, but that's the aspie in me I guess) autistic people don't have that others do?

I'm dead serious that having to treat different races and orientations of people differently is something that tugs at my aspie side to an enormous degree. The only "right" that I think I need to be accommodated is to be able to treat everyone equally.

“Protected Class” does not take into account that some members of those groups have a lot of privileges and some members of non protected classes have none.

DanielW wrote:
Fnord wrote:
WHAT "Autistic Rights Movement"?

:roll:


I'm confused there too. What rights don't I have that everyone else does?


Subminimum Wage
Quote:
The Fair Labor Standards Act (FLSA) provides for the employment of certain individuals at wage rates below the minimum wage

Also included are individuals whose earning or productive capacity is impaired by a physical or mental disability


Even though legally autistics have most rights NT’s have in practice this is often not the case.


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Roboto
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09 Aug 2019, 2:20 pm

ASPartOfMe wrote:
Roboto wrote:
ASPartOfMe wrote:
Roboto wrote:
Groups forming schemes and assembling to force their will on others is really uncomfortable for me. I would much rather see all the other group rights movements fall apart and have all people just be equal... When a law/rule goes in the books to favor one group due to a previous disadvantage, the rule never goes away and they have a permanent advantage until that governing body collapses.

Favoring one group over another is bad. Working towered your group having the same rights as most others when they don't
is a good thing.


If you've ever tried to fire someone in a "protected class" you'd understand where I'm coming from. Many of the laws force people to treat different groups of people different which is nothing more than enforced racism.

I'm unclear what rights (I would use the word privileges personally, but that's the aspie in me I guess) autistic people don't have that others do?

I'm dead serious that having to treat different races and orientations of people differently is something that tugs at my aspie side to an enormous degree. The only "right" that I think I need to be accommodated is to be able to treat everyone equally.

“Protected Class” does not take into account that some members of those groups have a lot of privileges and some members of non protected classes have none.


Example?