The autistic community and the autism parents' community

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Mona Pereth
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31 Oct 2019, 4:34 pm

This is a thread in which to discuss the relationship between the autistic community (mostly adults, though it includes some teens too, at least online) and the community of (mostly allistic) parents of autistic children.

These communities overlap, insofar as a significant minority of parents of autistic children are themselves autistic.

But the relationship between these communities has always been somewhat rocky, starting from the earliest days of the autistic community. See History of ANI by Jim Sinclair (written in 2005). See also Ari Ne'eman's comments about the history of both the autistic community and the parents' community in The errors — and revelations — in two major new books about autism (2016).


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Mona Pereth
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31 Oct 2019, 5:18 pm

Here, in the separate thread Building the autistic community?:

cyberdad wrote:
Some years ago I met a fairly wealthy business owner who an his own IT company. As we talked he revealed he had Aspergers (there was a couple of things he was self-conscious about and thought he should explain to me).

Like you he had plans to create a community of adults but he was very particular he wanted a network of "successful" professionals with Aspergers. His idea actually had merit.

Only a small minority of autistic people are "successful professionals."

The community I want to help create would certainly not be limited to "successful" professionals, although it would include (not be limited to) networking groups of both successful and aspiring professionals/workers in various particular fields. It would also include groups of autistic people based on their hobbies/interests; such groups need not require their members to be capable of paid work or capable of living independently.

The adult autistic community as it now exists is not limited to "independent" people. Here on Wrong Planet, for example, it includes quite a few people who are dependent on caregivers, although they are capable of writing reasonably well.

IMO the autistic community can and should include any autistic adult who is capable of participating meaningfully in at least one of the following: (1) online forums, (2) in-person meetings, and/or (3) telephone conference calls. This potentially includes quite a few people who are not capable of living independently.

The autistic community is, alas, not logistically capable of including those who cannot communicate at all or who have very severe co-occurring intellectual disability. That's not because such people don't matter, but simply because they are not capable of participating. Yet even they can and should still be on our radar. For example IMO, ASAN and any similar organizations can and should continue to promote policies to protect the most severely disabled autistic people from various abuses.

cyberdad wrote:
I didn't keep in touch despite accepting his facebook friendship, main problem I had was an attitude that people like him didn't want to have anything to do with lower functioning people on the spectrum as if they don't matter. I think part of the issue was he lacked a filter for politeness/refinement but he may have developed values (growing up) that autism was associated with not progressing.

If you think I'm expressing an elitist attitude similar to what you've described in the above paragraph, then you have misunderstood what I am saying. Please re-read what I wrote.

cyberdad wrote:
As I said he was quite wealthy and successful so I had nothing but respect for his tenacity and hard work. But lets be fair, he demonstrates better than anyone that there are two autistic communities in the world.
- Folks who live with dependents
- Folks who are independent

That's NOT the distinction I was making in this post, where I wrote:

Mona Pereth wrote:
(Note: Parents/family/kids groups aren't the main topic of this thread, which is the autistic adult community; but it may be interesting to note similarities and differences between the parents/family/kids groups and the autistic adult groups.)

The distinction I was making was simply between:

- The community of adults who are themselves autistic (and able to participate in said community, in whatever fashion)

- The community of parents of autistic people, of whatever degree of disability. (A large minority of these parents are themselves autistic, but the majority apparently are not.)

Other factors being equal, organizing a peer-led group of autistic people (even a group of just "Aspies"; all the more so a more inclusive group) is more difficult than organizing a peer-led group of parents, due to our disabilities that intrinsically make social activities more of a challenge. However, based on what you've said here, apparently organizing a peer-led group of mostly-allistic parents of autistic children has its challenges too. That's interesting to know.


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Mona Pereth
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31 Oct 2019, 7:32 pm

Here, in the thread on Building the autistic community?:

cyberdad wrote:
Mona Pereth wrote:
Probably because most autistic kids are averse to socializing in groups? IMO, to help autistic kids make friends, there needs to be an organized system for matching them up with other kids of similar cognitive profile who share their interests. What do you think?

In an ideal situation you would have some type of application like a dating site which matches children on the spectrum based on their cognitive profile. However that would be reliant on people subscribing to such a platform so if there's a limited pool of willing participants we are back to square one.

So it would need to be piggy-backed on an already-popular locale-based autism resource.

cyberdad wrote:
Mona Pereth wrote:
Did any of these groups include any organized activities/ice-breakers, or at least group discussions, for the parents too?

No

So what were the parents expected to do? Just sit on the sidelines watching the kids' activities? If so, then it's no surprise that many of the parents would be preoccupied with just watching their kids.

Or were the parents expected to go into a separate room and socialize amongst themselves?

cyberdad wrote:
Mona Pereth wrote:
I think most groups of people in general naturally tend to be cliquish unless they make a specific effort not to be.

Yes


cyberdad wrote:
Mona Pereth wrote:
Do you have any thoughts on how these groups could be organized better?

I think they should be organically organised through parent groups rather than by professionals. We have Asperger associations here in Melbourne but they have weird requirements like a "diagnosis" to join. I stay clear.

I would hazard a guess that these groups receive money either from the government or from private foundations. Such money tends to come with strings attached, including a lot of bureaucratic requirements, presumably for the purpose of ensuring that the money is properly spent. I would hazard a guess that the requirement of a diagnosis falls into this category.

Alas, the bureaucratic strings attached to government grants and foundation grants can sometimes end up strangling the soul of a charitable organization. This process has been referred to as "boardification." (See this page regarding the origin of that term.)

Another thing I've noticed: as far as I can tell, parents' groups have tended to evolve in either of two directions. Either (1) they get more and more dominated by professionals, or (2) they get more and more dominated by anti-vaxxers and people promoting quack remedies.

Perhaps a new generation of parents' groups is needed? It would be good to have some independent parents' groups that are NOT dominated by professionals, but that stay in regular contact with both the professional-dominated groups and autistic peer-led groups.


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firemonkey
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31 Oct 2019, 7:55 pm

I think there are at least 3 groups.

1) Folks who live with dependents
2) Folks whose independence is dependent on good and quite substantial support
3) Folks who are ,at least, as independent as the average member of the general
population.

I fit in the 2nd category . Before I moved near my stepdaughter I was struggling to manage. It was not picked up on because as a chronic mental health patient,as opposed to being acutely ill , I was at the back of the queue for support. On hindsight I had been self neglecting .


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cyberdad
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01 Nov 2019, 1:50 am

firemonkey wrote:
I think there are at least 3 groups.

1) Folks who live with dependents
2) Folks whose independence is dependent on good and quite substantial support
3) Folks who are ,at least, as independent as the average member of the general
population.

I fit in the 2nd category . Before I moved near my stepdaughter I was struggling to manage. It was not picked up on because as a chronic mental health patient,as opposed to being acutely ill , I was at the back of the queue for support. On hindsight I had been self neglecting .


Yeah I agree with this



cyberdad
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01 Nov 2019, 1:55 am

Mona all I am saying is that you need to be clearer who you want in your "autistic community".

A diagnosis of Autism means different things and firemonkey's tripartite breakdown makes sense in terms of whom you are potentially planning to network with.

I am all for autism networks and am actually trying right now to create an online network here in Australia for parents.



Mona Pereth
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01 Nov 2019, 3:11 am

cyberdad wrote:
Mona all I am saying is that you need to be clearer who you want in your "autistic community".

Different groups within the community would include different categories of people.

The groups for autistic people who work or want to work in particular occupations/professions would include only those people who are capable of working -- a category that would, hopefully, grow as more autistic-friendly workplaces are created.

Other kinds of groups would NOT need to be limited to people capable of working.


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cyberdad
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01 Nov 2019, 3:56 am

Mona Pereth wrote:
cyberdad wrote:
Mona all I am saying is that you need to be clearer who you want in your "autistic community".

Different groups within the community would include different categories of people.

The groups for autistic people who work or want to work in particular occupations/professions would include only those people who are capable of working -- a category that would, hopefully, grow as more autistic-friendly workplaces are created.

Other kinds of groups would NOT need to be limited to people capable of working.


Ah I see, networking mirroring how social and professional networks exist in the NT community.



Mona Pereth
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01 Nov 2019, 7:29 am

cyberdad wrote:
Ah I see, networking mirroring how social and professional networks exist in the NT community.

Sort of. The models I have in mind are the LGBT community and ethnic minority immigrant communities. Not everything these communities do is feasible for autistic people, but hopefully some of it is.


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01 Nov 2019, 6:34 pm

Mona Pereth wrote:
cyberdad wrote:
Ah I see, networking mirroring how social and professional networks exist in the NT community.

Sort of. The models I have in mind are the LGBT community and ethnic minority immigrant communities. Not everything these communities do is feasible for autistic people, but hopefully some of it is.


You do realise (and please take this as constructive feedback) that being an adult with autism is only the first step. So lets exclude severe autism + under 18 from your community then we get down to the following
- adults with high functioning autism living with parents no friends or job
- adults with high functioning autism living with parents with a job (may or may not have friends or co-workers)
- adults with high functioning autism living alone with no friends but has a job
- adults with high functioning autism with some friends but no job who would like more friends
- adults with high functioning autism who are in a relationship no job who would like more friends etc etc etc.....

Each person then might be LGBT or straight, educated or uneducated, high IQ or low IQ, attractive not attractive, male or female, old or young, white or non-white, relgigious or non-religious etc etc etc......

Each of these then crossover so what you end up is with an individual who is unique. Good luck....



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01 Nov 2019, 7:10 pm

cyberdad wrote:
Mona Pereth wrote:
cyberdad wrote:
Ah I see, networking mirroring how social and professional networks exist in the NT community.

Sort of. The models I have in mind are the LGBT community and ethnic minority immigrant communities. Not everything these communities do is feasible for autistic people, but hopefully some of it is.


You do realise (and please take this as constructive feedback) that being an adult with autism is only the first step. So lets exclude severe autism + under 18 from your community then we get down to the following
- adults with high functioning autism living with parents no friends or job
- adults with high functioning autism living with parents with a job (may or may not have friends or co-workers)
- adults with high functioning autism living alone with no friends but has a job
- adults with high functioning autism with some friends but no job who would like more friends
- adults with high functioning autism who are in a relationship no job who would like more friends etc etc etc.....

Each person then might be LGBT or straight, educated or uneducated, high IQ or low IQ, attractive not attractive, male or female, old or young, white or non-white, relgigious or non-religious etc etc etc......

Each of these then crossover so what you end up is with an individual who is unique. Good luck....



In my case: Adult with Asperger's and schizoaffective, living alone, never worked and no friends


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01 Nov 2019, 11:19 pm

firemonkey wrote:
cyberdad wrote:
Mona Pereth wrote:
cyberdad wrote:
Ah I see, networking mirroring how social and professional networks exist in the NT community.

Sort of. The models I have in mind are the LGBT community and ethnic minority immigrant communities. Not everything these communities do is feasible for autistic people, but hopefully some of it is.


You do realise (and please take this as constructive feedback) that being an adult with autism is only the first step. So lets exclude severe autism + under 18 from your community then we get down to the following
- adults with high functioning autism living with parents no friends or job
- adults with high functioning autism living with parents with a job (may or may not have friends or co-workers)
- adults with high functioning autism living alone with no friends but has a job
- adults with high functioning autism with some friends but no job who would like more friends
- adults with high functioning autism who are in a relationship no job who would like more friends etc etc etc.....

Each person then might be LGBT or straight, educated or uneducated, high IQ or low IQ, attractive not attractive, male or female, old or young, white or non-white, relgigious or non-religious etc etc etc......

Each of these then crossover so what you end up is with an individual who is unique. Good luck....



In my case: Adult with Asperger's and schizoaffective, living alone, never worked and no friends


I think the idea of bringing people together because of a diagnosis isn't going to necessarily make a community. There needs to be some type of "zeitgeist" where people feel drawn for a common reason. Even if it's temporary at least the memory of it will be enough



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01 Nov 2019, 11:57 pm

I'm getting the impression it would be hard to have an autistic community that was on a par with the LGBT community.
I could see mini communities forming , but how much they could work together on crucial/important issues is debatable.


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02 Nov 2019, 12:11 am

firemonkey wrote:
I'm getting the impression it would be hard to have an autistic community that was on a par with the LGBT community.
I could see mini communities forming , but how much they could work together on crucial/important issues is debatable.


Yep you are the right track. For the LGBT communities there's a common cause. For autistic people the trials and tribulations of children/adults with moderate-severe autism and their parents are entirely different to those higher on the spectrum.

Seems like NTs live on one planet but autistic people also live in a constellation of different planets (so yes mini-communities).

My daughter goes to a normal school but she isn't quite functioning socially to make friends with Aspies or NTs. She probably wouldn't qualify for Mona's "exclusive" autistic community.

She's got a number of strengths in terms of cognition/memory that means she is smarter than 99% of NTs but doesn't seem to be able to make friends.



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02 Nov 2019, 5:43 pm

Here, in the thread Building the autistic community?:

cyberdad wrote:
Actually how am I derailing this thread?

With ongoing confusion about what we are even talking about.

I'm not sure what the source of confusion is, but, among other things, I suspect you may be confusing the term "autistic community" with the term "autism community." The former is a subset of the latter -- and, currently, the smallest and least powerful of the three overlapping subsets listed below:

1) The (mostly NT) autism professionals' community.
2) The (mostly NT) autism parents' (and families') community.
3) The autistic community, i.e. the community of (mostly adult, mostly relatively mildly to moderately disabled) autistic people.

Do you question that the first two of the above entities exist, and need to exist, as entities in their own right, as well as being parts of the larger autism community? Apparently not. You yourself have talked about, in your own locale, the need for a parents' group independent of the professionals.

So you seem to be questioning the legitimacy of only the third branch.

Just as there's a need for parents' groups that are independent of professionals, so too we also need peer-led autistic people's groups independent of both parents and professionals. It is desirable that the community of such groups include as many different kinds of autistic people as it logistically can at any given time and place. But there are intrinsic limitations.

cyberdad wrote:
we are talking about "building" the autistic community

I correctly pointed out that you are giving people the impression there is one autistic community when infact you contradicted yourself saying that there are exclusion criteria against children, low-moderate functioning autistic people and their parents.

That means you are creating divisions....

It's not a question of "exclusion criteria" or "creating" divisions.

If a person is, as yet, incapable of communicating in any language-based way at all, then that person simply cannot (however much we may wish otherwise) participate in a community of any kind, at least not directly. That's not a "division" that I or anyone else "created" via an "exclusion criterion"; it's just a harsh reality.

The only possible ways that an autistic community could possibly hope to affect the lives of people who can't communicate would be indirectly, via the autism parents' community and/or via the autism professionals' community, or via parents or professionals who participate individually in forums like Wrong Planet.

But the parents and professionals themselves, if NT, are, by definition, not part of an "autistic community," though they can be (and often are) part of the "autism community," and indeed they can be part of the larger and more powerful (at least here in the U.S.A.) branches of thereof.

As for autistic adults vs. children: At least in the early phases, most groups in the autistic community will need to be adults-only, by practical necessity.

It would be desirable, in the long run, to have at least some groups for (or at least including) autistic children that are affiliated more with an organized autistic community than with either professionals or parents. But such groups would require resources we don't have yet (including, for example, money to pay lawyers for legal advice regarding the potential legal liabilities involved in dealing with other people's children).

At some point in the future, it might also be possible to provide resources to help autistic high school students organize high school clubs. That would be really great, but can't be our top priority at the present time.

In the meantime, autistic teenagers (or, at least, those teenagers who are capable of language-based communication) are already allowed to participate in some online forums such as Wrong Planet.


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Mona Pereth
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02 Nov 2019, 7:14 pm

Here, in the thread Building the autistic community?:

cyberdad wrote:
there are two autistic communities in the world.
- Folks who live with dependents
- Folks who are independent

Please see my post here, in which I talk about the three branches of the autism community:

1) The (mostly NT) autism professionals' community.
2) The (mostly NT) autism parents' (and families') community.
3) The autistic community, i.e. the community of (mostly adult, mostly relatively mildly to moderately disabled) autistic people.

The "Folks who live with dependents" are, if NT themselves, not an autistic community; they are part of the (mostly NT) autism parents' (and families') community.

As I noted here, you seem to have confused the term "autistic community" with "autism community."


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