Longterm visions for the autistic community
by Mona Pereth
Based on my experiences in the LGBT 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. The kinds of groups I think are needed include:
Groups of autistic (and autistic-like) workers in particular categories of professions / occupations / jobs (or who aspire to same). Example: a group of computer professionals -- the group I'll be organizing, because that's what I am. (See Autistic Workers Project.) Hopefully the existence of such groups will help foster the creation of more autistic-friendly workplaces too.
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 autistic spectrum are 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.
Support / self-help groups (such as the Queens discussion group) with the additional 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 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.
Groups of autistic people with particular hobbies or special interests. Such groups could be an excellent place for many of us to find friends.
Groups of autistic people within particular religions or ethnicities.
Disability rights advocacy groups, preferably groups whose members stay in touch with the larger local autistic community, both online and by attending one or more local groups of the other kinds mentioned above.
Leadership councils (mostly online) enabling a wide variety of small 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 profession/occupation-based groups and the hobby groups) could organize excursions to larger, NT-dominated gatherings as well, helping us to feel more comfortable in the latter, and in some cases asking for accommodations. For example, a group of autistic computer professionals could attend some New York Tech Meetup events together.
For some discussion of how to build groups for 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.
Featured page: Where to get an ASD evaluation as an adult.
It's not easy to find psychotherapists who are qualified to diagnose autism spectrum disorder, especially in adults.
On the above-linked page is a preliminary list of places where some members of local support groups obtained their diagnoses. Soon this list will be updated to include many more places and, for those already listed, more information about insurance, other reduced-cost options, etc.