Longterm visions for the autistic community

by Mona Pereth

Based on my experiences in the LGBTQ+ community (I'm bi) and in various oddball subcultures, I have a lot of ideas on how the autistic community could become much better organized and more useful than it is now.

Hopefully this website, for example, will eventually feature lists of local autistic-friendly workplaces and autistic-owned (or co-owned) businesses. I plan also to be involved in creating an interactive website intended to help various kinds of groups get started in the NYC area and elsewhere.

A well-developed autistic community ("community" in the sense of organized subculture) would also include many more autistic peer-led groups than now exist. The kinds of groups I think are needed include, among others:

• Career-oriented groups of autistic (and similarly neurodivergent) workers in particular categories of professions / occupations / jobs (or who aspire to same). Example: a group of "techies" (computer professionals, of all kinds, and electronic engineers) -- a group I'm currently organizing, because that's what I am. (See Autistic Techies of the NYC Area -- just an informal chat group so far.) Another, better-developed example: the U.K.-based Association of Neurodivergent Therapists, founded in spring 2021. Hopefully the existence of such groups will help foster the creation of more autistic-friendly workplaces too. These groups could start out as specialized support groups or informal networks and then, hopefully, eventually evolve into full-fledged professional associations. (See Autistic Workers Project.)

• Autistic disability rights advocacy/activist groups. A few such organizations already exist now, e.g. the Autistic Self-Advocacy Network here in the U.S.A. But such groups could have much more clout than they have now if only we also had a much larger, better-organized, non-activist community that they could tap into for support when needed.

• More and more local general support / self-help groups. Here in NYC, hopefully eventually at least one group per named neighborhood, so that the groups could be within walking distance for many of us.

  Having groups within walking distance could be very helpful to the probably-many autistic adults out there who can't drive a car safely due to attention issues, can't stand to ride the subway or buses due to sensory issues, can't ride a bike due to physical clumsiness, can't afford a cab, and aren't eligible for Access-A-Ride because they haven't yet been diagnosed with any qualifying disability. Having a group in every neighborhood could also give our community a lot more political clout, so that our concerns would be taken more seriously. And it should certainly be possible to have a group in almost every neighborhood, given the high population density of many parts of New York City, and given that people on the autism spectrum are now estimated to be about 2% of the population.

• Support / self-help groups for autistic people with particular co-occurring conditions, e.g. addiction recovery groups. (It would be very helpful to have professional-led groups of this kind as well, especially for those of us with serious mental illnesses.)

• Support / self-help groups (such as the Queens discussion group) with the additional specific aim of helping members acquire what I call autistic-friendly social skills, to help us get along with each other and help minimize potential infighting within the autistic community. These particular skills are, as far as I can tell, not the same set of skills that are typically emphasized in (professional-led) "social skills groups". (See Autistic-friendly social skills vs. blending in with NT's.) Because autistic-friendly social skills are not oriented towards trying to blend in with NT's, we don't need to depend on NT's (or professionals) to teach us these skills; we can learn them ourselves, and with each other, using some of the many web-based tutorials, and critically evaluating which of the recommended techniques do and do not work well for us as autistic people.

• Groups of autistic people with particular hobbies or special interests. These groups could be an excellent place for many of us to find friends. A few such groups could also play important roles in the larger community as well. For example, some members of a group of sewing hobbyists could make custom-made clothes, at relatively reasonable prices, for those of us who have difficulty finding comfortable clothes for sensory or other reasons.

• Groups of autistic people within particular marginalized ethnic groups.

• Groups of autistic people within particular religions.

• Nonprofit organizations professionally staffed by social workers who specialize in helping autistic adults (and adults who suspect they may be autistic) find affordable dagnostic evaluations and navigate any needed government services. Such an org would likely need lots of outside funding, e.g. by foundation grants.

  Note that most of the other kinds of groups mentioned on this page are of the ragtag, volunteer-led, grassroots variety and don't require much if any funding, beyond amall donations from the better-off members (or their families). The bigger and better-organized the ragtag grassroots volunteer sector of our community is, the easier it will be to attract funding to the kinds of professionally-staffed organizations we need too, and the easier it will be to ensure that those organizations actually serve our needs rather than just some billionaire's idea of what our need are.

• Leadership self-training groups and leadership councils (mostly online) for autistic people who either currently lead/facilitate or would like to lead/facilitate groups of whatever kind. (The only such leadership self-training group that I know of, so far, is the Autistic Peer Leadership Group.)

  These would not only make it easier for us to start a wide variety of new small groups, but would also be a way for the leaders of various groups to stay in touch with each other and occasionally work together, without necessarily being part of one big centralized organization. (Given the wide variety of different kinds of autistic people, and given the intrinsic difficulties most of us have with organizational politics, it's probably best for the autistic community to avoid having big centralized organizations.)

Of course, by the very nature of our common disability, most of us find it hard to handle a lot of in-person socializing. So, other than the local neighborhood-based support groups, it would probably be easiest for most of the above-listed kinds of groups to exist primarily online (though in a locally-focused way), with occasional in-person get-togethers.

In addition to -- or perhaps instead of -- holding their own events, some groups (e.g. the career-oriented groups and the hobby groups) could organize excursions to larger, NT-dominated gatherings as well. (For example, members of Autistic Techies of the NYC Area could attend some New York Tech Meetup events together.) Attending these larger events together could help us feel more comfortable there, and would also make it much easier to ask for accommondations if needed.

For some discussion of how to build groups of autistic people, see the Wrong Planet thread Starting and leading autistic peer support & social groups (See also the older thread Building the autistic community?.)

We also need to find other ways that we, as a community, can make it easier for all of us to make friends, which is something most of us struggle with. I have some ideas for possible ways to do this, including a possible forthcoming interactive website.