Life on the Spectrum

Archive for November, 2013

What is Autism?

What is autism? That’s a good question. There’s no real answer to it, because autism is different things to different people. To some, autism is a curse that must be eradicated. To others, it’s a variation in human evolution.

I can speak only for myself and what autism is to me.

Autism is a part of me. It is a part of me that most of the time is neither good nor bad but is simply there. I have blue eyes, I have blonde hair, and I am autistic. That’s just the way things are. As Lady Gaga would say, I was born this way.

There are times when autism can be annoying or frustrating. These are usually times when my sensory issues or social skills deficits get in the way of my doing something that I want to do. That doesn’t mean that autism is bad. It’s just that being autistic can be more challenging than being neurotypical.

There are times when autism can be rewarding and fulfilling. When I attend autism conferences and spend time with other neurodiverse people, I have an amazing time and come away enriched. When I can figure out a problem by thinking differently, I’m thrilled. When my sensitive hearing enables me to hear something that others have trouble with, it’s like I’m rewarded for being autistic.

What is autism? Autism is my friends. Autism is my community.

Autism is me.

Autistic person speaking

November 1 is Autistic Speaking Day, also known as Autistic Communication Day (because not all autistic people speak the way we normally understand the concept of speaking.) This is a day for autistic people to speak, literally or figuratively, for ourselves instead of sitting back and letting organizations like Autism Speaks try to speak for us and about us. Autism Speaks has no autistic people on its board of directors, so they’re not doing a very good job of speaking for autistic people.

When I was wondering what to write about today, I happened upon a series of posts that a blogger called Neurodivergent K wrote for Autistic Speaking Day. They’re about a situation she encountered at Autreat, the autism convention that happens in the United States every year. If you’re interested in what she has to say, you can go to http://timetolisten.blogspot.ca/ and read her series of “Autistics Speaking Day: truth to power” posts.

I had an experience at an autism conference that was similar to hers, though less serious. K’s experience had to do with auditory sensitivity, but hers was more serious as she has epilepsy that can be triggered by sensory overload, and she had a number of people try to tell her that she was wrong to complain about the situation that almost caused her to have a seizure.

I went to an autism convention in October. It was planned by an autistic person for autistic people. However, not all the people involved were autistic. One person who presented at the conference works with autistic people, so I assumed he was familiar with the types of sensory sensitivity autistic people have. To be generous to him, I will assume that he is unused to making his presentations to autistic people and instead makes them to non-autistic, non-sensory-sensitive people.

There was one day during the convention when this particular person was scheduled to give a presentation from two o’clock to three o’clock. I had seen snippets of his presentation during the convention already, and I knew that they contained very loud, pounding rock music. In fact, his presentation seemed to be one long rock music video. So I decided to take an extra-long lunch that day and sit on the waterfront where it was peaceful (it was a grey, cloudy day so not many people were around the waterfront) and I was in familiar surroundings of ocean and mountains. I’d already had problems that day as a few people had brought children to the morning presentations, and there wasn’t much for the children to do so they had become bored and disruptive (note that I am not blaming the parents, who had been assured that children were welcome; children were welcome, but there wasn’t anything for them to do), which had disturbed me and made it difficult for me to enjoy the morning session. That was why I had decided to head down to the waterfront in the first place. Ocean and mountains are my touchstones.

At three o’clock I arrived back at the place where the presentations were being held, but I could tell even before I went inside that the music was still going. So I walked back up to my motel, ate a granola bar and checked my e-mail before returning to the centre. Unfortunately, the presentation was still happening, even though it had been scheduled to end at three. When I objected to the music and pointed out that the presentation was supposed to be over, the director of the convention said that they had started late and suggested I go for a walk if the music bothered me.

Wait a minute. I’m autistic. The person making the presentation with the loud music is not. Shouldn’t the needs of an autistic person at an autism conference be paramount?

No one could tell me when the presentation was supposed to end, so I was reluctant to go for a walk in case I missed the delegate meeting that was scheduled to come after. I sat down, figuring it had to be over soon since it was already half an hour overtime. But it didn’t end. It didn’t end for another hour. I tried my best to tolerate it. I put my hands over my ears, but there’s only so long that anyone can do that, and soon I was sitting in my chair, rocking back and forth with my hands over my ears close to bursting into tears.

The odd thing is that no one else complained and no one seemed to care that I was in distress. Surely other autistic people have noise sensitivities, I thought. But no, everyone just sat and watched the video presentation. Before long the presenter started to speak, but the music was still going and made it impossible to hear him. Even worse, he was speaking through an interpreter who wasn’t completely familiar with the language he was interpreting.

Eventually someone suggested that the music be turned down, and the music did get turned down, but not by much. It went from “wall-shaking volume” to “dull roar.” I used earplugs, but unfortunately, as someone with extreme hearing sensitivity, I’ve used earplugs more than half my life, and I’m almost completely immune to their effects. All they do is make it difficult to hold conversations. They don’t block out anything that’s not speech.

The noisy music presentation finally ended 90 minutes after it had originally been scheduled to end. We had the delegate meeting, but unfortunately the children were still there and still disruptive. I picked up my bag and announced that I was completely fed up and was leaving. Fortunately someone agreed to take the children into another room to entertain them, otherwise I’d have completely missed the delegate meeting that I wanted to attend.

Unfortunately, I have not encountered a lot of sympathy or support for my experience. No one else who attended seems to be bothered by noise the way that I am bothered by noise. I still can’t understand how anyone who is holding an autism conference, whether it’s the one I attended or the one Neurodivergent K attended, can not comprehend that some autistic people have noise sensitivity and that we have a right to have our sensory sensitivities accommodated at autism conferences.

I may not attend this conference next year. I was hoping to go to the one that Neurodivergent K attended, but because of their lack of support for auditory sensitivity, I may not go to that one, either. I am very unhappy that there are autism conferences that do not accommodate hearing sensitivity and I am beginning to think I may never be able to attend any autism conferences at all.