Autistic Self Advocacy Network with Autism NOW 4-3-2012

8/2/2019 Autistic Self Advocacy Network with Autism NOW 4-3-2012

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Autism Acceptance:

We are real people, not burdens to thesystem or to our families, not empty shells,

tragedies or train wrecks. Every person hassomething to offer, us included.


2/24

Why Its Important to Accept Autism

The biggest reason: Were 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.


3/24

Autism Awareness vs. Autism

Acceptance

Awareness

Based on the idea that

autism is something the

world would be better offwithout

Focused on cure and

prevention

Belief that you cansomehow separate autism

from autistic people, as if

its a malignant tumor

Acceptance

Were here, were weird, getover it we have!

We are in favor of progressfor autistic people (learningnew skills and acquiringnew tools), not trying for

normalcy at any cost

There are as many possiblepresentations as there areautistic people get toknow more of us!


4/24

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)


5/24

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 peoplehaving no friends and no fun and no lives


6/24

A Vigil, The Night Before

On Friday, March 30, ASAN groups from all over thecountry held candlelight vigils to commemorate therecent murder of George Hodgins, a 22-year-oldautistic man killed by his mother, Elizabeth, in a

murder-suicide. The news reports of this incidentmostly focused on what a burden George was to hismother, and most did not even mention his name; weare shifting the focus to how the media and the publiclets murderers of disabled people off the hook for their

crimes, on the implicit assumption that itsunderstandable that people would want to kill us.We have partnered with other disability rights groupsin putting these vigils together and publicizing them.


7/24

Leading a Disability-Focused Group

Access is the key. We do not want this to be solely ahaven for glib aspies who pass readily for nonautistic.This means meetings must be accessible both byprivate vehicle in transit, in a quiet environment, with

no strange odors, with stim toys and paper to draw andwrite on, and the possibility for dimmer lighting forthose who are light-sensitive. Also, our meeting spacesmust be free of charge, as we do not want to have tocollect dues. We welcome nonautistic support people

who are necessary to provide access for the autisticperson, as long as nonautistic people understand thatthey are not to speak during the meeting other thaninterpreting.


8/24

What I Do

Nail down meeting space, coming up with a timeand place that will work for most group membersand staying on top of the bookings

Post meeting agendas, meeting reminders, andaction alerts for the group

Moderate the listserv

Come up with new ideas for things for the groupto act on (and follow through on old ideas thathave been dormant)

Conduct interviews to vet other Chapter Leads


9/24

What I Would Like to Do

I am relatively new to leading this group (only sinceJanuary of this year). But what I would like to do is findbetter ways for members to stay in touch in between

meetings, and to match people by interests if theywould like to meet others who share them. (Someautistics are interested in that, and some arent.)


10/24

Life on a Shoestring

Basically, I operate with no budget. ASAN does coverthings like dues paid to Meetup for functioning as anorganizer, but other than that, I provide things likepencils, paper, etc. out of my own money.

We have meetings at community spaces (libraries, etc.)that dont charge rent, so we dont have to take upcollections from participants. We dont want anyonefeeling like they cant afford to come, and we also

dont want to put the Chapter Lead in a position ofhaving to pay the rent out of pocket if contributionsdont cover it.


11/24

My Terrifying Journey from Meeting

Participant to Chapter LeadI first started attending ASAN meetings in June 2009,

about 8 months after I received my diagnosis ofAsperger Syndrome. I was still trying to sort out what

it all meant, and I wanted to meet people who weredoing likewise.


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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 shes doing. I wouldnt havethe 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.


13/24

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 didnt have that in mind here at all. I justwanted to meet other autistic people.


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But evidently, Elesia really liked what I had tosay, and she really championed me within theorganization, and after about a year or so of

attending meetings, she started asking me toparticipate in summits and give talks on behalfof ASAN. She also asked me to start assistingme with conducting interviews of potential

Chapter Leads from all over, and eventually Ibegan conducting these interviews myself(over Skype or gchat).


15/24

Meanwhile

My psychiatrist, who I was referred to by thetherapist who diagnosed me, was very taken withwhat I had to say about autistic adults, a subjecthe had limited familiarity with before me, and

with my permission, he invited Internal Medicineresidents who were studying psychiatry to listenin on our sessions. He told me they were blownaway, too which amazed me -- and eventually

we gave a joint talk to a whole room full ofresidents. I was starting to think, improbably,that maybe I had a future as a public speaker.


16/24

In the past, I always assumed I couldntreally do public speaking or function as aleader, because I couldnt do it the way

nonautistic people did it. I didnt look likethem, I didnt sound like them, I didnt act likethem, and so I thought I was all wrong for thejob. Once I realized that I didnt have to try to

squelch my autistic-ness that in fact, itwould be a mistake to do so that is when Ihad success.


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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 didnt want to stay openpast 6 PM any longer.


18/24

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.


19/24

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 spacethat would be free of charge and available forour use after 6 PM on Fridays (and also partly

thanks to life changes making it difficult forsome people to attend at all).

What was I going to do????


20/24

Starting from (Almost) Scratch

I still had our listserv from the Meetup group, towhom I could send emails. This meant I hadsomething to build on.

However, I still needed to find a regular time andplace to hold the meeting, so I could put up flyersstating we meet in place X on the nth blankdayof every month. Since first Fridays at 6 PM were

now off limits, and that is what the group hadtremendous resistance to changing (in addition toa new location), that left me in a bit of a pickle.


21/24

Finally, I settled on a public library branch thathad meeting spots open on Tuesday andWednesday nights. We have tried Tuesdays andthe attendance has been rather sparse; we are

now trying Wednesday instead, which seems tobe working better; now the challenge is picking atime of month (nth week of the month) that willbe consistently available on that day.

Ive been told that even neurotypicals dont likemeeting on Tuesdays. Its just one of thosethings.


22/24

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.


23/24

Conclusion

Fortunately, I accept change fairly readily; slavishadherence to routine is not one of my traits! Ivemoved cities multiple times, changed jobsmultiple times, even been divorced -- by now I

ought to be used to it. I actually welcomechange, as long as its good change!

We are all good at different things at different

times. Or maybe even the same thing at differenttimes. Thats what Autism Acceptance is allabout.


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Andee Joyce

Chapter Lead ASAN-PDX

[email protected]

Autistic Self Advocacy Network with Autism NOW 4-3-2012

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