Autism Acceptance

:
We are real people, not burdens to the system or to our families, not empty shells, tragedies or train wrecks. Every person has something to offer, us included.

Why It’s Important to Accept Autism
The biggest reason: We’re not going anywhere. Focusing on cure and prevention does nothing to help autistic people who already exist. And we have always been here, although the diagnostic criteria that covers us is a relatively recent phenomenon.

Autism Awareness vs. Autism Acceptance
Awareness • Based on the idea that autism is something the world would be better off without • Focused on cure and prevention • Belief that you can somehow separate “autism” from “autistic people,” as if it’s a malignant tumor Acceptance • We’re here, we’re weird, get over it – we have! • We are in favor of progress for autistic people (learning new skills and acquiring new tools), not trying for normalcy at any cost • There are as many possible presentations as there are autistic people – get to know more of us!

• A group for autistics, by autistics, 18 years old and up • Focused on both activism and socializing • Our group, ASAN-PDX (Portland, OR), has monthly meetings, plus a listserv (a Facebook page for our chapter is in the larval stages)

Autism Acceptance Month
• Coincides with “Autism Awareness Month,” we are providing an alternative view to the Tragedy Model of Disability promoted heavily during this month • Our plan is to get together in groups, wearing Neurodiversity shirts, in public places, to show that we defy the stereotypes of autistic people having no friends and no fun and no lives

A Vigil, The Night Before
On Friday, March 30, ASAN groups from all over the country held candlelight vigils to commemorate the recent murder of George Hodgins, a 22-year-old autistic man killed by his mother, Elizabeth, in a murder-suicide. The news reports of this incident mostly focused on what a “burden” George was to his mother, and most did not even mention his name; we are shifting the focus to how the media and the public lets murderers of disabled people off the hook for their crimes, on the implicit assumption that it’s “understandable” that people would want to kill us. We have partnered with other disability rights groups in putting these vigils together and publicizing them.

Leading a Disability-Focused Group
Access is the key. We do not want this to be solely a haven for glib aspies who pass readily for nonautistic. This means meetings must be accessible both by private vehicle in transit, in a quiet environment, with no strange odors, with stim toys and paper to draw and write on, and the possibility for dimmer lighting for those who are light-sensitive. Also, our meeting spaces must be free of charge, as we do not want to have to collect dues. We welcome nonautistic support people who are necessary to provide access for the autistic person, as long as nonautistic people understand that they are not to speak during the meeting other than interpreting.

What I Do
• Nail down meeting space, coming up with a time and place that will work for most group members and staying on top of the bookings • Post meeting agendas, meeting reminders, and action alerts for the group • Moderate the listserv • Come up with new ideas for things for the group to act on (and follow through on old ideas that have been dormant) • Conduct interviews to vet other Chapter Leads

What I Would Like to Do
I am relatively new to leading this group (only since January of this year). But what I would like to do is find better ways for members to stay in touch in between meetings, and to match people by interests if they would like to meet others who share them. (Some autistics are interested in that, and some aren’t.)

Life on a Shoestring
• Basically, I operate with no budget. ASAN does cover things like dues paid to Meetup for functioning as an organizer, but other than that, I provide things like pencils, paper, etc. out of my own money. • We have meetings at community spaces (libraries, etc.) that don’t charge rent, so we don’t have to take up collections from participants. We don’t want anyone feeling like they “can’t afford to come,” and we also don’t want to put the Chapter Lead in a position of having to pay the rent out of pocket if contributions don’t cover it.

My Terrifying Journey from Meeting Participant to Chapter Lead
I first started attending ASAN meetings in June 2009, about 8 months after I received my diagnosis of Asperger Syndrome. I was still trying to sort out what it all meant, and I wanted to meet people who were doing likewise.

Elesia Ashkenazy was then the Chapter Lead for ASAN-PDX, and she did a bang-up job leading what was then a very well-attended, often boisterous and distracting meeting. My first thought was, “I could never in a million years do what she’s doing. I wouldn’t have the patience,” due to my issues with auditory processing and my difficulty hearing my own thoughts while other people are talking -which happened in this meeting a lot.

The very last thing I ever expected was to be asked to assume a leadership role in this organization. Which is funny, because I was used to assessing almost every other situation in my entire life for career potential – being the flailing undiagnosed aspie that I was -- but I didn’t have that in mind here at all. I just wanted to meet other autistic people.

But evidently, Elesia really liked what I had to say, and she really championed me within the organization, and after about a year or so of attending meetings, she started asking me to participate in summits and give talks on behalf of ASAN. She also asked me to start assisting me with conducting interviews of potential Chapter Leads from all over, and eventually I began conducting these interviews myself (over Skype or gchat).

Meanwhile…
My psychiatrist, who I was referred to by the therapist who diagnosed me, was very taken with what I had to say about autistic adults, a subject he had limited familiarity with before me, and with my permission, he invited Internal Medicine residents who were studying psychiatry to listen in on our sessions. He told me they were blown away, too – which amazed me -- and eventually we gave a joint talk to a whole room full of residents. I was starting to think, improbably, that maybe I had a future as a public speaker.

In the past, I always assumed I couldn’t “really” do public speaking or function as a leader, because I couldn’t do it the way nonautistic people did it. I didn’t look like them, I didn’t sound like them, I didn’t act like them, and so I thought I was all wrong for the job. Once I realized that I didn’t have to try to squelch my autistic-ness – that in fact, it would be a mistake to do so – that is when I had success.

…and then, the stuff hit the fan.
In mid-2011, two things happened that shook up our group: Elesia Ashkenazy received a well-deserved promotion within ASAN to Outreach and Special Projects Coordinator, and we got kicked out of the meeting space we had been occupying for three years because the owners didn’t want to stay open past 6 PM any longer.

Elesia then asked someone else in the group to take over as Chapter Lead, and we proceeded to try out an ever-changing series of meeting times and places, in the hopes of finally finding a situation that would work for most of our group. After a month or two, she asked me to co-lead, and a month or two after that, in the beginning of 2012, the co-leader dropped out.

This left me as the sole Chapter Lead. With no regular meeting space or time. And dwindling attendance, at least partly thanks to our not being able to find another space that would be free of charge and available for our use after 6 PM on Fridays (and also partly thanks to life changes making it difficult for some people to attend at all). What was I going to do????

Starting from (Almost) Scratch
• I still had our listserv from the Meetup group, to whom I could send emails. This meant I had something to build on. • However, I still needed to find a regular time and place to hold the meeting, so I could put up flyers stating “we meet in place X on the nth blankday of every month.” Since first Fridays at 6 PM were now off limits, and that is what the group had tremendous resistance to changing (in addition to a new location), that left me in a bit of a pickle.

• Finally, I settled on a public library branch that had meeting spots open on Tuesday and Wednesday nights. We have tried Tuesdays and the attendance has been rather sparse; we are now trying Wednesday instead, which seems to be working better; now the challenge is picking a time of month (nth week of the month) that will be consistently available on that day. • I’ve been told that even neurotypicals don’t like meeting on Tuesdays. It’s just one of those things.

• Once we have nailed down a day of the week in addition to the place with consistent month-to-month availability, I can begin the task of printing up flyers that can be posted continuously in places like Voc Rehab and other disability-focused organizations and distributed to anyone who is interested. • Whew.

Conclusion
Fortunately, I accept change fairly readily; slavish adherence to routine is not one of my traits! I’ve moved cities multiple times, changed jobs multiple times, even been divorced -- by now I ought to be used to it. I actually welcome change, as long as it’s good change! We are all good at different things at different times. Or maybe even the same thing at different times. That’s what Autism Acceptance is all about.

Andee Joyce
Chapter Lead – ASAN-PDX andeejr@gmail.com

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