Building the autistic community?

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Thank-you for your feedback:

Enclosed is a LINK of a WP post about an Autism community in the North SF Bay-Area (a community I've looked-at with interest) - a model which has become notable to those advocating the expansion and development of Autism Communities.

This is far from where I'm located in California (this includes the ASAN Chapter in Sacramento) - hence, most of the efforts (as I've discussed here on WP) are gleaning examples from elsewhere (usually outside of CA) of what has proven beneficial to adults with HFA.

I've even included links to a WP post to better orientate people new to WP. Any feedback on this post?

Most of the resources for adults here in CA serve the developmentally disabled. I had a great experience with an arts instructor and staff who've taught the arts at our local community college.

Once the pandemic is under control, I sense that participation in programs for arts for Autism is a must - that is the arts programs encourage interactions with thoughtful NTs and people (such as myself) with HFA.

LINK: viewtopic.php?f=3&t=391995&p=8774316#p8774316

To JustFoundHere:

You and I are talking about completely different things when we use the term "autistic community." I am talking about an organized subculture. You are talking about housing co-ops.

The intended topic of this thread is building an organized subculture.

"Autistic communities" in the sense of housing co-ops can certainly be part of the "autistic community" (in the sense of organized subculture), but they are far from the easiest part of it to implement.

Moreover, "autistic communities" in the sense of housing co-ops are typically created by groups of well-to-do (and mostly NT) parents, not by the autistic residents themselves.

I created this thread for the primary purpose of talking about what we ourselves can do, as autistic people, to help build the autistic community (in the sense of organized subculture), without relying on NT's to do most of the work or to put up large sums of money.

You've repeatedly talked about AANE, in multiple posts on the previous page of this thread. AANE is another high-budget, mostly NT-led endeavor that overlaps with the autistic community but is not directly relevant to the primary intended purpose of this thread, which is to talk about what we ourselves, as autistic people, can do to build the autistic community.

As for what we ourselves can do, primarily this would entail creating small groups (of the various kinds listed on my page about Longterm visions for the autistic community) with very low budgets, at least at first.

Those of us who want to build groups need to learn leadership/facilitation skills. To that end I've created the Autistic Peer Leadership Group (APLeG).

For novice leaders, I recommend that one's first group be a hobby-oriented social group revolving around some specific hobby. Leading such a group is easier and lower-stakes than leading/facilitating, for example, a support group or a career-oriented group.

Thank-you for clarifying!

The hobby-orientated groups e.g, arts programs are easier to conduct than resources devoted to day-to-day living; on issues related to housing, consumer issues.

The notions of resources largely managed by adults on the Autism Spectrum sounds very good - yet, again, trusted NTs (other than parents) experienced with the Autism spectrum are necessary "in the loop" - it is what it is! It's difficult to establish that balance of roles amongst NTs, HFAs and NT-like HFAs in the delivery of resources.

The one resource I'm considering is an Independent Living Resource Center - every county in CA has an ILRC location (LINK).

Many ILRCs are just office locations offering support services related to housing, and consumer issues for the visually and hearing impaired. ILRCs would consider serving people on the Autism Spectrum.
LINK: https://www.calsilc.ca.gov/independent-locator/

You still don't seem to understand what I'm talking about. When I speak of "hobby-oriented social groups" as part of the autistic community, I'm not talking about arts "programs" of some larger, parent-led or professional-led organization. I'm talking about small, independent groups founded by the leaders themselves.


These look like important and valuable services, but they are not part of what I am referring to as the "autistic community." You referred me to a government website. Offhand I can't tell if these "Independent Living Centers" are offices of a government agency, or if they are private organizations with government contracts, but, in either case, they clearly are government-sponsored and professional-led. Also it appears that they serve disabled people in general, not just, or even primarily, autistic people in particular.

An example of what I do mean by groups within the "autistic community" is this forum, Wrong Planet, itself. Another example, more specific to the San Francisco area, is the San Francisco Adult Asperger Self Help Meetup (AASHM).

Individuals without a lot of resources can organize groups, of various kinds, as explained in some of the tutorials on the following page: Tutorials on how to lead/facilitate a group.

P.S. to the above:

More generally, the "autistic community" (subculture of groups and online spaces organized by and for autistic people) is not the same thing as the "autism community" (subculture of groups, agencies, and online spaces organized by mostly-NT parents and autism professionals). To one degree or another, most of us do need various services from the "autism community" -- but we also need our own distinct "autistic community."

AANE is, primarily, part of the (mostly NT-led) autism community, although it does overlap with the autistic community too, insofar as some of its support groups are facilitated or co-facilitated by people on the autism spectrum.

But it's also possible to have autistic community spaces that are separate from any organizational dependence on the (mostly NT-led) autism community. An example is this forum, Wrong Planet, and a few other similar forums. Other examples include the various Autistic peer-led groups led by members of the Autistic Peer Leadership Group (APLeG).

Been busy this past week - wanted to respond sooner.

A few years ago, I had considered planning a trip to the SF Bay Area to participate and meet people at the monthly San Francisco Adult Asperger Self Help Meetup (AASHM).

I had also wanted to visit, and meet people who made and continue to support the Sweetwater Spectrum Community North of SF. I sense that the SF Bay Area and esp. the North SF Bay Area are "ahead of the curve" with Autism Spectrum (includes HFA) awareness - hence efforts to maintain such entities as AASHM, and the Sweetwater Spectrum Community into the future.

Yet, over the past few years, I've felt that a visit to the SF Bay Area was unnecessary - yet, I still view "best practices" of the SF Bay Area efforts with interest - hence, I have brought-up examples from elsewhere with those concerned with the Autism Spectrum in my local community. I have found that people in my local community viewed these examples with interest.

In my local community, I've met NTs who are empathetic of both the Autism Spectrum (including HFA), and the developmentally disabled alike - hence, it's likely not important to note how much NTs are involved in local community resources. It is what it is!

To break down resources in two categories:

* The 'formal' resources for the day-to-day mundane concerns might best be handled by the Independent Living Resource Center (ILRC) - as ILRCs can assist in housing, and possibly some consumer-related issues.

* The 'informal' or arts and recreational activities were actually recommended and paid-for by the CA State Govt. Regional Centers (who a few years ago, extended eligibility to people on the Autism Spectrum (including HFA)) - this is how I met those terrific NTs in the arts.

* Still, the CA State Govt. Regional Centers have been slow to recognize the needs of HFA clientele (as clientele with developmental disabilities are naturally the highest priority) - hence why ILRCs might act as those gap resources to deliver necessary services for people concerned with HFA.

Again these look like valuable resources, but please start your own thread about them instead of posting repeatedly about this sort of thing here in this thread, where they are off-topic.

As I've already explained over and over again, the intended topic of this thread is groups and resources created by autistic people -- not by (mostly NT) parents, professionals, or the government.

I understand.

To be fair (and don't take this the wrong way) I prefer JustFoundHere's views about building an autistic community by building bridges with NTs much more realistic and healthy than some type of "segregated' high functioning autism group.

JustFoundHere says autistic people can learn much from interacting more with NTs and I agree (not just because I am NT).

Your model is akin to John Elder Robison's aspiration of an autistic community run by autistic people which (I'm afraid) just seems unrealistic unless its a small unrepresentative group of elite/successful autistic people and governed by somebody like Alex Plank.

The spirit of the neurodiversity movement is for all types of people with different brain wiring to come together (not just high functioning autistic people).

This post addresses various ideas in one post of which , i am not affording myself the the energy to address all all of them . But must say am more inclined to think that autistic persons . Would be more apt to be able to identify with the needs of other autists ...

You can still do both....

I think bridges should be built to the larger, NT-dominated autism community too.

But I think we also need to build our own community (in the sense of organized subculture). As for what kinds of groups I envision, see my article Longterm visions for the autistic community.

Again I'm not denying the value of any of what JustFoundHere is talking about.

I'm just saying it's off-topic here in this thread. Please limit this thread to the question of how to build the autistic community (organized subculture).

Once again I would also like to request that any and all further discussion about the relationship between the autistic community and the NT-dominated autism community take place in other threads, such as The autistic community and the autism parents' community, rather than here.

Again the topic of this thread is the question of how to build the autistic community (organized subculture).

I'll post some of my own recent thoughts about this question soon.

In the meantime, to re-post what I said here:

Groups of autistic people already exist. That, in and of itself, is nothing new. For example, most major cities already have at least one autistic/Aspie peer-led support group.

There are also some larger, more complex organizations of autistic people, such as ASAN. There are even a few autistic-led organizations that manage to hold annual conferences, which are both socially and logistically much more challenging to organize than the smaller, simpler kinds of groups I've been building.

I doubt that very many of even the best leaders among us can handle the politics of a large organization. But I hope networks of smaller groups, centered around leadership self-training groups, will be feasible for more of us.

I am wondering if you should start another thread? I have said this before Mona, when you speak of an "Autistic community" in my mind (and perhaps others) that includes i) lower functioning people and ii) the parents and family of an autistic child/ren iii) NT partners of autistic adults and iv) NT friends, workmates and wider community involved with autistic people in various capacities.

I am using the term "autistic community" in the sense in which it has historically been used by autistic activists for decades. If you wish to debate about the meaning of the term, please do that in a separate thread, such as The autistic community and the autism parents' community -- wherein you and I already had precisely this same debate about a year and a half ago. Please review it there and then continue it there if you wish, rather than here.

Once again, please stop derailing this thread, whose topic is how we (autistic people) can build the autistic community (in the sense of an organized subculture of autistic people).

I'll stop discussing it as it seems to be triggering you but I just wanted to point out your esoteric viewpoint (borrowed from autism activists?) is not necessarily how others on this forum see the composition of the autism community. I'm afraid you don't have a monopoly on that term.

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.

The floor is yours, I won't bother you again.

I don't mind you discussing it. I only mind you discussing it in this thread. Let's please move this discussion to the other thread that I linked to in my previous post, and which I will link to again: The autistic community and the autism parents' community.


The topic of this thread is not the "autism community." The topic of this thread is "building the autistic community," which is not the same thing as what is commonly called the "autism community." The latter does include (and indeed is dominated by) parents and professionals. The "autistic community" is a small proper subset of the "autism community."

Again, further discussion of the relationship between these two belongs elsewhere, e.g. in the thread The autistic community and the autism parents' community.

Last edited by Mona Pereth on 09 May 2021, 9:36 am, edited 1 time in total.