The autistic community and the autism parents' community

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ASPartOfMe
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16 Nov 2020, 5:01 am

Mona Pereth wrote:
cyberdad wrote:
v) people who live with their parents will have little in common with people who are independent

Again we have both in our local NYC peer support groups.

In my experience, the divisions are only toxic online. We are such a small part of the population continuous dividing up based on differences is impractical and counterproductive. The support groups you mentioned worked not only in spite of but because of them. People that had little in common with each other except for their autistic traits learned from each other. That is because these were pure support groups that deal with issues of being autistic with little or no politics autism or otherwise. I see no reason why this could not be recreated online. The only reason it is not IMHO is that it has always been done that way. In the 90s and 00s when forums and other online spaces were created politics and other sections were created with the idea of building esprit de corps. People wanted to find out more about the people they were often interacting with. That was a less toxic time in public life. While the Heaven section was created here as a purely support space members fights do slip into the dialogue sometimes.


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cyberdad
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16 Nov 2020, 11:47 pm

Mona Pereth wrote:
I'm sorry to hear you weren't successful, but plenty of parents' groups do exist. For example, here in the U.S.A., the Autism Society has affiliates in almost every major city. Most affiliates include a parents' group, and many also include a (professional-led) group for autistic adults. Here in NYC we apparently don't have an Autism Society affiliate for whatever reason, but we have several other groups that fill a similar niche.


Thanks, I concur with the points you make and fully support your initiatives. I'll just touch on your comment on parent groups as I have some experiences with these.

In my experience parents are gatekeepers to whom can interact with their kids. So if you are dealing with children on the spectrum then the attitudes of the parents influences whom their child interacts with but also informs the child's attitudes toward other children. I have seen this in "talk teen groups" I organised for my daughter and have witnessed/observed how the parents tend to hover over their kids (I don't put myself in this group but NT parents tend to be helicopter parents).

The second aspect is culture. In Australia While there is a lot of tolerance of disability in public spaces, I have observed how stigmatised parents of disabled kids are, there seems to be a lot of shame associated with disability and I think my fellow Australians don't do a great job in making either parents or children welcome or feel inclusive in social environments.Asians are much worse, they prefer we hide/lock up our children.

In this respect I think maybe Americans and Europeans might be more open and socially mature about engaging with disability in groups. So it might be easier to get like-minded parents together, groups that you talk about the people seem to make an effort, In contrast the community building for autism communities here in Australia is woeful.



Mona Pereth
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09 May 2021, 8:57 am

Reviving this thread in an attempt to stop the derailment of my separate thread on Building the autistic community:

Here, in this thread, I am perfectly fine about discussing the relationship between the "autistic community" (in the sense of an organized subculture of autistic people) and the larger "autism community," which has 3 overlapping parts:

1) The autistic community (defined above).
2) Various organizations and online spaces dominated by parents of autistic children.
2) Various organizations and online spaces dominated by autism professionals of various kinds.

The "autism community" not only includes, but is dominated by, the parents and professionals.

Note also that, in both cases, I am using the word "community" to mean "organized subculture." I am not using the word "community" as a synonym for "demographic." Therefore, even the "autism community" does not include all parents of autistic children, but only those who have bothered to participate in relevant groups, either in-person or online, at least occasionally.

Everyone, if you wish to debate about the meanings of the term "autistic community" and "autism community," please do so here, in this thread, not in my separate thread about Building the autistic community.


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- Longterm visions for the autistic community


Mona Pereth
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09 May 2021, 7:33 pm

Replying to a post in the other thread mentioned above:

cyberdad wrote:
What you are describing is infact a high functioning autistic support/peer network. I have absolutely no problem with this (infact I have always supported this idea) but please call it for what it is and don't claim it represents the interests of all people in the autism community.

As I pointed out both in my response there and in my message above, "autism community" is not synonymous with "autistic community."

The "autism community" consists of all organizations and online spaces that are focused on the topic of autism, from whatever perspective. The "autistic community," is a small subset of the autism community, consisting of only those groups and online spaces within the autism community that are led or facilitated by autistic people, with autistic people as their primary intended audience. The autism community is dominated primarily by professionals and secondarily by parents.

The autistic community is not necessarily confined to "high functioning" people. That depends on the individual group.

Here on Wrong Planet, for example, anyone who can read and type can participate -- including literate non-speakers and some people with mild-to-moderate intellectual disability.

The Autistic Self Advocacy Network (ASAN) aims to accommodate any autistic person who expresses an interest in joining. The ASAN website includes some resources on how to accommodate intellectually disabled people.

As for the kinds of groups I'm building, and that I hope will be built in the future by members of the Autistic Peer Leadership Group, some of them -- the career oriented groups -- would necessarily be limited to work-capable autistic people. Other groups, such as the hobby-oriented groups, could accommodate more severely disabled autistic people, to one extent or another, depending on the nature of the specific hobby.

During the pandemic, the Autistic Peer Leadership Group and all of the groups led/facilitated by members thereof have been meeting via text-based chat, thus accommodating literate non-speakers. We will probably continue to hold some of our meetings via text-based chat even after the pandemic is over with, thus continuing to accommodate non-speakers. We already have one literate non-speaking member and hope to attract more.

Of course, there certainly do exist autistic people who are too severely disabled to participate meaningfully in any group or forum, even with reasonable accommodations. They cannot meaningfully be included directly in any "community" (in the sense of organized subculture). The best we can do is to advocate for their human rights and try to protect them from various abuses, as ASAN and other autistic activist groups have worked to do.


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- Autistic in NYC - Resources and new ideas for the autistic adult community in the New York City metro area.
- Autistic peer-led groups (via text-based chat, currently) led or facilitated by members of the Autistic Peer Leadership Group.
- Longterm visions for the autistic community