Becky Heaver, PhD, tells us about her work as a person with Aspergers Syndrome who also runs a self-advocacy group for those affected. In this piece she talks of how the experience has been since she first began this work six months ago
When I applied for the position of group supporter for a self-advocacy group for adults with Asperger’s, I saw my role as being there entirely for the benefit of the group members. After I was appointed, I carefully considered the group from several different points of view, as a psychologist, as a researcher, as a community volunteer, and as an advocate for friends and family. But I never considered it from the point of view of me as an individual with Asperger Syndrome.
I had several months to prepare for the first meeting, time spent looking for office space, for a suitable meeting venue, researching the best day and time, making flyers and meeting potential members. As the day drew nearer I found myself getting more and more anxious, finding more things to panic about – “What if nobody turns up?” “What if everybody turns up and I can’t manage the meeting?” “What if they don’t like me and think I’ve done a poor job?” “Why have I applied for a job that requires group skills and people skills I’m not sure I possess?”
I cleared the whole day prior to the evening meeting to allow myself to prepare, and re-prepare. I kept looking at the clock and wishing it were all over. In all honesty I don’t think I got a single productive thing done that day, and was very glad to have done most of it in advance. I arrived early to allow myself some settling in time, and to get everything set up with the help of my manager, who then disappeared off to a back room before the members arrived.
Other groups might invite parents, carers, friends, support workers and others to meetings, but I strongly felt that an important aspect of the group would be that it was run by and for people with Asperger’s, and that meant only people with Asperger’s were to be invited into the meeting. Luckily the one parent who did attend was perfectly happy to sit with my manager in the ‘Neurotypical Lounge’, otherwise known as my broom-cupboard of an office, with some tea and coffee.
People starting arriving in droves. Ok, that might be an exaggeration, but I am only able to focus on one person at a time, so people arriving before I had finished my ‘welcome script’ with the previous person was making me rather red and squeaky. But eventually everybody had their name labels on, I had explained about the facilities, people were seated, and everyone had copies of my slides (whether they wanted them or not). So I began.
I hate giving presentations, but I wanted to provide some background information about the group, why it had been set up, what it was for, and to reaffirm members’ ownership of their own self-advocacy group. I’d written it all out, but couldn’t read the sheet because my hand was shaking so much. I secretly wondered whether I was talking too fast. Someone said, “Becky you’re talking too fast…” Ah ok. I slow down. “Becky we can’t hear you”.
I come to the end of my material and, surprisingly for me, this was the one thing I had not prepared for and I had no extra topics! There’s an awkward bit of silence whilst I flap about trying to think of something to discuss. Gradually, the group come to my rescue and begin sharing stories of their own, talking about ways in which their Asperger’s affects them and finding common ground. I forget all about not having any notes, or even why I’m there, as I jump in grinning, “I do that too!” The meeting finishes on time and people leave.
I sink into a chair, but my mood is soaring. I did not anticipate the completely overwhelming sense of belonging, identity, acceptance and understanding that I experienced in that meeting (and every meeting since). I hadn’t ever had the privilege of being in a group made entirely of other adults with Asperger’s. I didn’t know how powerful it would be. They knew I was anxious and they knew why. They also knew what sort of gentle feedback I needed to keep on track, and I was very grateful.
We’ve been meeting now for 6 months. Not a lot has changed. I still don’t get anything done during the day before a meeting. I still worry about all manner of things going wrong. I still speak too fast, and too quietly. But I still come out of those meetings feeling elated, thinking what an amazing group of people we are. We have achieved so much in a short space of time, and I think we can get a lot done.
Becky Heaver, PhD, is the group supporter for the Asperger’s Voice Self-Advocacy Group of West Sussex, England, and also works as a researcher at the University of Brighton, England. She was diagnosed with Aspergers in 2010. You can contact Becky at aspergersvoice@gmail.com
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Image courtesy of David Castillo Dominici / FreeDigitalPhotos.net
