Sometimes people ask what drives me. Why do I push so hard to make things better, when life is already so many more degrees of difficult for me? Why am I not content with just helping a few parents, a few educators, a few adults here or there? Why can’t I just play a small part and let others do the heavy lifting?
I can’t because I have to build a bridge — a bridge that one of my dearest, most loved younger people, let’s call this person D., can use to cross into a better life. Sometimes, a bridge doesn’t look like a bridge. And sometimes, that’s the best way to get to where you want to go, even when it doesn’t look like it. I can’t help D. directly. But if I can change the world to be more hospitable for us autistics, maybe that bridge will be there for D., when D. needs it.
When I first learned I had autism at 23, I read everything I could get my hands on. The diagnostic criteria all made perfect sense, in terms of my own experiences and those of many people I’d been naturally drawn to (who also ended up being somewhere in the autistic spectrum). But the medical research and stance didn’t make sense at all, in terms of the coming-and-going of symptoms in my life, for which I had been creating a consistent list of what made them worse, and what made them better, over the intervening 12 years since my wilderness camp experience.
Fortunately, there were other adult autistics who shared my experiences of symptoms coming and going. Things like allergies that would be horrible and then taper off to bearable for the two days after any swim in a chlorine pool. Or things like the four days of gradually returning thinking, memory, and reaction time after taking a bad hit from the after-shave and perfume at church. Or things like fluorescent lights making computer screens illegible. Or things like entering an impermeable bubble every time I had to take a Tylenol.
But because my experiences weren’t reflected in the research, or in the common culture:
I, and other autistics, have spent a lot of time and energy over the years, in conversations, in emails, in hospitals, in child development centres, in assisted living centres, in meetings, in stuffy halls with poor air quality that would cost us days of optimal functioning. We invested that time out of a need to right a wrong. What has happened around autism is not right. It is not ok that parents, teachers, and even health professionals should have to work so hard to get the truth. It is not ok that autistic children, teens and adults are invalidated for their truths. And it is especially not ok that our entire culture has evolved in a way that makes autism — children born in needless pain — inevitable.
I spend a little time every day feeling grateful that there are researchers who refuse to follow the dogma, and that there are librarians who love to help make information accessible. They are my heroes. Over the last 30 years, the tiny trickle of research that validates the actual experiences of autism and recovery has become a torrent. But D. is already living in an unkind world that has driven such a high proportion of us autistics to suicide. I have to keep going. Maybe, if I can span this torrent just right, D. will have a bridge to get into a life of health, joy, and acceptance.
Where do autism behaviours come from? Answers blend autistics’ experiences with relevant health research that turns lives around.
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