The first autistic I ever knew didn't speak, but loved to feel the stubble on my chin, on anyone's chin really. He liked bread, and once bit through plastic to get a taste of bagel. My sister babysat him sometimes. His brother, one of my friends, was the first to recognize the similarities we had, noting how I stimmed and suggesting that I might be on the autistic spectrum as well because my nervous twitches didn't just come while talking to girls but were essentially all the time.
A few years later I was emailing his brother explaining that his playful suggestion held more weight than he may have realized. I was indeed on the autism spectrum and the process of finding out was being both a blessing and a curse. I suddenly understood myself and my past like never before, but knowing also involved telling, opening me to stigmatization and discrimination. I was not allowed to perform the basic milestones that marked adulthood in my culture… But I moved on…
Eventually autism colored many more parts of my life, if that could be said to be possible. Autism colors virtually every perception and experience, making it a core part of personal identity. However, more of my friends or their family members were diagnosed, my own child was diagnosed. Some among my nieces and nephews were diagnosed. Our lives are marked. But I've moved on, and lived life as fully as I could...
Recently this first autistic that I knew suffocated during a seizure. Though I don't have them, seizures are common among autistics. It's a fate that could easily have happened to me or to my children if they had seizures. He's moved on as I will someday as well. Since I am verbal I have the privilege of being better understood through my life and my children will have even better. It's sad to say farewell to one whose identity as an autistic came to be defined in the wave of understanding just before the revolutions in understanding that allowed me to be diagnosed as well. I can only say farewell pioneer, I hope I can be part of the ongoing revolution of better understanding and care that will make the world a better place for people like you and me, and my own children.
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