The autistic community and the autism parents' community

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cyberdad
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02 Nov 2019, 7:19 pm

Mona Pereth wrote:
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.


Actually that's your definition of a community. It isn't mine.

A community is one that is inclusive of all people.



cyberdad
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02 Nov 2019, 7:27 pm

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


Hmmm seems to me you are making a lot of prior assumptions about what people should and should not know?

In my experience getting a group of autistic people together with varying levels of functionality/deficits would be challenging somewhat like getting a group of cats in the same room. (even if you restricted this to high functioning folk)

At least my earlier acquaintance (despite our disagreements) had a more realistic goal with professionals with autism as they would be able to at least competently run such a group without a facilitator.

Again I don't want to interfere with your plans and wish you the best. (you seem driven so would probably ignore my posts anyway :lol: )



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02 Nov 2019, 7:33 pm

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.

As noted above, people in category #1 are part of the autism parents'/families' community. (If NT themselves, they are not part of the autistic community, though they are indeed part of the larger autism community.)

People in your category #2 can be, or at least should be, a part of the autistic community. Their caregivers can be part of the autism parents'/families' community.

firemonkey wrote:
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.

Hopefully the autistic community will eventually include support groups specifically for people in situations like yours.


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Mona Pereth
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02 Nov 2019, 9:24 pm

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.

I remember a long period of time, in the history of the LGBT community, when the L/G/B and the T parts didn't get along too well, and the T part felt politically neglected by the L, G, and B parts. Also, among lesbians and gay men, there have been periodic flare-ups of prejudice against bisexuals.

Among autistic people, various "mini-communities" will need to form first, before they can work together. That's actually a similarity to the history of the LGBT community, not a difference from it.


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Mona Pereth
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02 Nov 2019, 9:27 pm

cyberdad wrote:
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....

Nevertheless, groups of autistic adults do already exist, and some of us do manage to make friends in those groups. We don't need to be exactly like our friends in every way.

We do need a lot more groups, in more locales, and we need a wider variety of different kinds of groups. We also need more specialized online social media.


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cyberdad
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02 Nov 2019, 11:02 pm

Mona Pereth wrote:
Nevertheless, groups of autistic adults do already exist, and some of us do manage to make friends in those groups. We don't need to be exactly like our friends in every way.

We do need a lot more groups, in more locales, and we need a wider variety of different kinds of groups. We also need more specialized online social media.


Agree with both your comments but the challenges are there. In the NT world we do make friends with people who are different but that's because NTs are/can be flexible. The people on the spectrum are fixed in their ways and lack flexibility tend to be the ones who lack friends.

I actually now think that the autistic people who do (as you say) manage to make friends should be the first focus and then maybe expand the to friendless folk later? or I suppose it can be done concurrently...IDK



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03 Nov 2019, 12:26 am

cyberdad wrote:
Mona Pereth wrote:
As I noted here, you seem to have confused the term "autistic community" with "autism community."


Hmmm seems to me you are making a lot of prior assumptions about what people should and should not know?

I guess I need to define my terms more often, then. The meanings I've used are the most commonly accepted ones on the autism-related websites and blogs I've been reading over the past couple of years.

cyberdad wrote:
In my experience getting a group of autistic people together with varying levels of functionality/deficits would be challenging somewhat like getting a group of cats in the same room. (even if you restricted this to high functioning folk)

There already exist autistic-led groups that organize conferences, such as Autscape, that aim to accommodate a wide variety of autistic people, including those with extreme sensory sensitivities, those who can't talk (but can type), and those with mild-to-moderate intellectual disability. I've never been to such a conference so I'm in no position to judge how good a job they actually do of accommodating all these different kinds of autistic people, or how many people with relatively severe disabilities actually manage to attend (with accompanying caregivers in some cases).

In any case, the Autistic Self-Advocacy Network (ASAN) publishes some info on its website about how to accommodate people with various kinds of "Intellectual and Developmental Disabilities," and requires its chapters/affiliates to accommodate autistic people at all levels of ability who want to participate.

I don't think it's reasonable to expect all autistic-led groups to be able to accommodate autistic people at all levels of ability. For example, career-oriented groups would include just people who have, or are capable of acquiring, the skills necessary for the kind of career that is the group's focus. But I think it should be a longterm goal to have as many groups as possible that do aim to accommodate a wide range of autistic people, as ASAN does, and as Wrong Planet currently does.

cyberdad wrote:
At least my earlier acquaintance (despite our disagreements) had a more realistic goal with professionals with autism as they would be able to at least competently run such a group without a facilitator.

By "facilitator" here, you apparently mean a therapist or other autism professional acting as facilitator?

(The word "facilitator" is the commonly accepted term for the leader of a support group, whether peer-led or professional-led.)

It should not be assumed that "successful professionals" are the only autistic people with the skills necessary to lead a group. It's best not to make assumptions about what autistic people can and cannot do; we tend to have weird (by NT standards) combinations of abilities and disabilities. While it's probably true that only a small minority of us can competently lead a group, that small minority may have some very surprising members.

cyberdad wrote:
Again I don't want to interfere with your plans and wish you the best. (you seem driven so would probably ignore my posts anyway :lol: )

And I wish you the best at organizing a local parents' group.


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Mona Pereth
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03 Nov 2019, 1:12 am

cyberdad wrote:
In the NT world we do make friends with people who are different but that's because NTs are/can be flexible. The people on the spectrum are fixed in their ways and lack flexibility tend to be the ones who lack friends.

I'm not sure I agree that "flexibility" is the main issue here. But that's a subject for another time.

cyberdad wrote:
I actually now think that the autistic people who do (as you say) manage to make friends should be the first focus and then maybe expand the to friendless folk later? or I suppose it can be done concurrently...IDK

Helping autistic people (including currently friendless ones) find friends is actually a fairly high priority for me, though not my very top priority. It's one of the things I plan to do with my forthcoming website. Also I consider friendship an important topic to be discussed in autistic self-help groups.


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03 Nov 2019, 1:21 am

cyberdad wrote:
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.

Only because groups for kids aren't, and can't be, a top priority for the autistic community per se. But hopefully the emerging autistic community will be able to generate some lessons for the autism parents' community regarding how autistic people (including kids) can make friends.

cyberdad wrote:
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.

I wasn't able to make friends as a kid either.

Sounds to me like she needs to be introduced to kids who aren't just autistic/Aspie but are also her intellectual peers (or near-peers) and who also share at least some of her interests.


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03 Nov 2019, 1:41 am

Mona Pereth wrote:
By "facilitator" here, you apparently mean a therapist or other autism professional acting as facilitator?

(The word "facilitator" is the commonly accepted term for the leader of a support group, whether peer-led or professional-led.)

It should not be assumed that "successful professionals" are the only autistic people with the skills necessary to lead a group. It's best not to make assumptions about what autistic people can and cannot do; we tend to have weird (by NT standards) combinations of abilities and disabilities. While it's probably true that only a small minority of us can competently lead a group, that small minority may have some very surprising members.


I guess a central person who organises contacting individual members of the proposed group and then acts as go to person at the first meeting. The role could be formal (like a facilitator) or informal like a central contact for emails/questions/rules?



cyberdad
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03 Nov 2019, 1:46 am

Mona Pereth wrote:
Sounds to me like she needs to be introduced to kids who aren't just autistic/Aspie but are also her intellectual peers (or near-peers) and who also share at least some of her interests.


Yeah it's an interesting conundrum since NTs have little patience or interest in being her friend. She has made friends with Aspie girls but there isn't much reciprocation from any effort she makes. At school she has mostly had NT male friends (around her age 14) who she plays with at recess. But again there's not been any development and I think they tolerate her rather than sincerely interested being friends.



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03 Nov 2019, 2:30 am

cyberdad wrote:
Yeah it's an interesting conundrum since NTs have little patience or interest in being her friend. She has made friends with Aspie girls but there isn't much reciprocation from any effort she makes. At school she has mostly had NT male friends (around her age 14) who she plays with at recess. But again there's not been any development and I think they tolerate her rather than sincerely interested being friends.

What are her hobbies / interests / preferred activities? Have you found any autistic/Aspie kids who are her intellectual near-equals and also share at least some of her interests?


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03 Nov 2019, 11:44 am

cyberdad wrote:
Mona Pereth wrote:
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.


Actually that's your definition of a community. It isn't mine.

A community is one that is inclusive of all people.

In what practical direct, meaningful way do you think it would be possible for the autistic community to include them, at least at the present time? Even in the larger "autism community," they are included only indirectly, via their parents and via the professionals who interact with them.

Even you wrote, earlier (when still confusing "autistic community" with "autism community"):

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

Even your list did not include the "dependents" themselves (even "high-functioning" dependent children, let alone people unable to communicate).

We can, and some of us (e.g. organizations like ASAN) do advocate for their rights, e.g. to protection from various abuses.

Also, some of us -- especially those with long developmental delays who eventually learned to talk or write well, but who remember what it was like to be incapable of communicating -- could be valuable sources of info for parents of severely disabled autistic children, and for the professionals who interact with them, if only those parents and professionals would listen.

Neither of the above constitutes direct inclusion, in an organized autistic community, of people incapable of any language-based communication. But, currently, it's the best we can do.

Do you have any other ideas?


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03 Nov 2019, 2:22 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....


A beginning is a very delicate time .


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

See above............ a smile to you ,, btw ,, see have found .having worked with hfa ,, muddled through situations some very good , some the worst could concieve of . Still living alone , and no friends .... sometimes , surviving is the best one could hope for.


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03 Nov 2019, 6:29 pm

Mona Pereth wrote:
cyberdad wrote:
Yeah it's an interesting conundrum since NTs have little patience or interest in being her friend. She has made friends with Aspie girls but there isn't much reciprocation from any effort she makes. At school she has mostly had NT male friends (around her age 14) who she plays with at recess. But again there's not been any development and I think they tolerate her rather than sincerely interested being friends.

What are her hobbies / interests / preferred activities? Have you found any autistic/Aspie kids who are her intellectual near-equals and also share at least some of her interests?

Her special interests are highly unique which is why I think she prefers mixing with boys (cars, trains, trucks, public transport, aeroplanes) and she is into all the technical stuff make, models, specs...flight paths, timetables etc)



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03 Nov 2019, 6:35 pm

Mona Pereth wrote:
Neither of the above constitutes direct inclusion, in an organized autistic community, of people incapable of any language-based communication. But, currently, it's the best we can do.

Do you have any other ideas?


TBH IDK....I think what I am talking about is aspirational all inclusive community, I know one parent who have a severely autistic child and the husband/wife seem stressed and self-conscious in public. Ironically they have family/friends support who help so I guess they probably don't need my sympathy,