Life on the Spectrum

Archive for October, 2012


My Weekend at the International Naturally Autistic People Awards, Convention and Festival

For almost four days, from October 19 to the 22, I was surrounded by fellow Auties and Aspies. Three of my Aspie friends and I went on what we deemed our “Aspie Road Trip” to attend a convention for autistic people, by autistic people, about autistic people. Children and adults, families and singles, all were welcome. There was no talk of a cure. No one talked about changing who we are. No one was looked at strangely if he or she was stimming. A young autistic boy hopping on one foot around the theatre was smiled at with affection, rather than scowled at in irritation. I exclaimed to one fellow attendee, “It’s so nice to be surrounded by other autistic people!” My new friend replied: “I know. Isn’t it relaxing?”

The first night, Friday, was an awards ceremony. Autistic people from around the world were honoured for their achievements in categories such as performing arts, entrepreneurship, community achievement and visual arts. There were speeches from local politicians. We enjoyed performances from autistic artists: music from Scott James and Samantha E, poetry from Marc Rosen and James Paul Wagner.

Yet even with all the amazing talent on display, I think the best part of my evening was meeting and connecting with other people, particularly other women, on the spectrum. As much as I enjoyed the awards and performances, I looked forward to the intermissions, when I could meet and talk to new people. “Wait,” you might be saying. “You have Asperger’s Syndrome. You don’t like to meet and talk to new people.” My answer to that is: I do when they’re autistic like me.

The next morning, Saturday, consisted of keynote speeches and presentations from people who provide services to children and adults with autism spectrum disorders, including movement therapy from Joanne Lara, water therapy from Marianne Hansen and sports/movement therapy from Paul Cojocaru, who came all the way from Romania to attend the awards. I kept wishing that I’d had access to these therapies when I was a kid. I am sure that my motor skills and overall physical/body awareness would have benefited from the sorts of programs offered by these presenters,

Then there was a speech from Dr. Hedy Fry, the Member of Parliament for Vancouver Centre. Her speech was followed by a question-and-answer session in which many unhappy people stood up and vented their frustrations toward the government. Dr. Fry was sympathetic, but as she is a member of the federal opposition, and policies toward autism are a provincial responsibility, there is nothing she can do to help.

I seized on a statement she had made regarding autistic people being mistaken by the police for someone who is drunk or high, and her mention that a particular autism society in Canada has suggested a police registry for autistic people. I asked her to clarify that and suggested that more training and education for the police would be preferable. She said that she does not support such a registry herself, but that this is one reason we need a national autism strategy.

My concern about a “national autism strategy” would be the likelihood that such a strategy would be another thing geared toward children. As Dr. Fry said, there are people who do not believe in the existence of autistic adults.

Our afternoon on the second day was spent in workshops. I attended a writers workshop and a performing arts workshop. In the former, we discussed ways to promote our writing and increase its visibility. In the latter, we read a radio play. There are some very talented writers and actors in our autistic community.

I spent the evening alone in my hotel room having some much-needed quiet time, what I call my introvert time.

On Sunday morning I had breakfast with some of my fellow Aspie women. I value the time I can spend with other women on the spectrum, because there are so few of us. We did spend some time discussing politics, but most of our conversation was focused on autism issues. We talked about health care, employment issues, families, friends, and how we can help each other as Aspie women by sharing our experiences with each other and giving advice when it is helpful.

On Sunday afternoon we had a delegates meeting in which we began the process of planning for next year’s conference. I have been put in charge of the online organizing committee. Next year’s conference will be six days long instead of three, and will be held on the Sunshine Coast of British Columbia from October 1 through October 6. I will most likely be starting a Kickstarter or Indiegogo account to raise funds to help me and my Asperger group attend. I strongly urge you, if you are autistic/Aspie, to seriously consider doing some fundraising of your own to attend next year’s conference.

Sunday evening was the gala dinner dance. It was an amazing event. We had a delicious dinner, which included food for people on gluten-free diets, as many autistic people are. We had more musical performances, a few speeches, and a lot of dancing. Unlike at your local nightclub, the people at this dance don’t care what you look like when you dance. This was truly “dance like no one’s watching.” I danced as much as my asthma would allow, and pulled a few other people in to dance as well.

On Monday morning we all said our goodbyes, arranged to add each other on Facebook, hugged (yes, autistic people DO hug!) and set off for home (or, in the case of some of our musical performers, to their next venue.) We got lost a few times, but my friends and I made it home in one piece from our Aspie road trip.

I feel like I have only barely scratched the surface of what my weekend was like. I am an extremely detail-oriented person, but going into every detail would make this blog post much, much longer. I also don’t have the language, at least not right now, to describe how this entire experience made me feel. I want to say “accepted,” but that is only part of it.

Let me share an anecdote that comes as close as I can get to summing up my experience. I had many conversations with many different people this weekend, and as I often do, I went over those conversations in my head afterwards. As I also often do, I began wondering if the people I spoke to had judged me as being weird, stupid or pushy. Then I thought to myself: wait. These are my fellow autistic people. They probably have the same concerns as I do. They’re not going to judge me.

I think that was probably my biggest take-away from this conference.


Why listen to autistic adults?

In hanging around the autism blogosphere I’ve noticed a large disconnect between autistic adults and the parents of autistic children. There seems to be very little discussion among those of us who are adults, who have grown up with autism, and the parents of the children who are currently growing up with autism and will one day become autistic adults.

I don’t know if this is because (1) the parents hope their children will be cured of autism before they become autistic adults; (2) because we adults talk about the difficulties and hardships we faced, and this distresses the parents who don’t want their children to face the same hardships; or (3) because many of us adults have accepted our autism and don’t want to be cured, while the parents are still hoping for a cure for their children.

I don’t want to go into the whole “cure” debate here, but I do want to address the second point here: that we autistic adults talk about the hardships we’ve faced, and this distresses the parents, who don’t want their children to face the same hardships.

This, to me, is the biggest reason why parents should listen to autistic adults: because we’ve been there. We’ve been there, done that, and bought the t-shirt. Most of all, we’ve survived and come out, hopefully stronger and wiser. We can tell parents, and older kids, what we’ve learned. We can say, “This is what worked for me in this situation. Maybe it will work for you too.” If there isn’t a solution, at least we can say, “I survived, and so will you.”