Autism Rocked…We Were Moved.
I love conferences. You could say I’m a conference junkie. This past week, I walked into the second day of a conference unlike any other I have attended to date. “Autism Rocks…Let Us Move You” was held in Newmarket on Nov. 2 & 3. It was created by and for people with autism. Entering the hall there were the usual tables, podium, and microphone. But these tables were covered in brown paper and there were crayons and suckers sprinkled around randomly. On the paper covering the tables were colourful drawings and doodles from the previous days participants. Table posters reinforced Autism Positive messages – “Different, not Less” “Not About Us Without Us” “Autistic Pride”. The language was direct. Bold. Unapologetic. First Person – which implies Person First, but is more straightforward. The person-centric language issue has been controversial. Person With Autism or Autistic? For this conference, the term “Autistic” was accepted and encouraged. I will use it interchangeably with other terms here.
Conferences can be tiring. I have strategies. I take notes & pictures on my ipad. Bring my own water and something Gluten/Sugar Free to eat. A sweater if it’s cold (it was) and a couple of layers to peel if it’s hot. I do square breathing and have my own discreet sensory “resets” I use when overloaded. (Finger pulls and pushes out of sight are reenergizing and refocusing). It’s a lot of work.
This event, however, wasn’t work. At “Autism Rocks…Let Us Move You.” I felt included and welcome. There were several supports, which, oddly I haven’t found at other Autism Oriented Conferences, beyond the request that participants refrain from wearing scent or possibly eating nut products. “Autism Rocks” attendees were encouraged to wear communication badges to let others know what mode they were in: green, I will communicate with everyone; yellow, I will speak only with those I know; red, I will not communicate with anyone right now. Everyone got all three colours in a badge holder to display around their neck. Whatever colour you displayed was the mode you were in. By lunch I was yellow. I didn’t use the red badge, but felt happy that I could if necessary. If you needed to be red all day, no one was going to intervene or try to “help”. The entire event was about how autistic people live with those issues every day. Many were demonstrating strategies for dealing with crowds or sensory issues. Some participants were knitting. Some of us were colouring. Some of us moved quietly around the room. A few people fidgeted with sensory toys. But everyone was listening in their way.
Which brings me to the most powerful part of the event for me. Witnessing Autistics convey an unvarnished reality of life as parents, workers, partners and PEOPLE in a society that promotes homogeneity and suspects anything else, was re-affirming and energizing. I was reminded how deeply anxiety in autistics can run, even when someone looks, if not calm, then unfazed. I thought anew about all the different areas of Executive Function that can create havoc socially, academically, professionally, logistically, and psycho-emotionally when they are out of sync. And I was taught again not to make assumptions based on the external messages I think I am getting from someone on the spectrum. Their interior life may differ vastly from what is going on externally. Neurotypicals expect to be able to “read” everyone so we can get on with things. For people with autism, the same socially accepted signals can seem confusing and unnecessary impediments to THEIR getting on with it. And so we have a cultural gap to be bridged.
Add to that gap, the additional challenge of being a female on the spectrum, which was the focus of the morning of Day 2 – “Girls and Women on the Spectrum” – and life can get even more complicated with less information out there and more difficulty obtaining an accurate diagnosis.
Having autism is a different way of being. It creates multiple challenges as well as unique abilities and gifts. Autism is only a crisis if our larger communities do not acknowledge, accommodate and include those with neurological differences.
Teachers, helpers, artists, writers, scientists, thinkers, inventors – many gifted people colour outside the lines and think outside the box. Why are we still reluctant to embrace other ways of thinking and being when so many of these have brought us such things as computers, new scientific concepts, symphonies, paintings and technologies?
As John Elder Robison, high-profile “Aspergian” (person with Asperger’s), advocate and author says: “Building up a weakness just makes you less disabled. Building a strength can take you to the top of the world.” This conference gave attendees a view of both and gave a unifying positive voice to the participants with autism who are different, not less.
I was sorry to have missed the day one of this conference, which I heard was also wonderful. For information on all the presenters and more on the event, visit: http://mandy2395.wix.com/autismrocks#!about/cjg9
Kudos to the organizers of this conference, Mandy Klein, Autistic parent /advocate/blogger and Maxine Share, “parent of”/KPAS family consultant, as well as Kerry’s Place Autism Services and Autism Ontario York Region and the many volunteers who made it happen. Hoping this is the first of many more.