What I Think

There's a reason I call myself an autistic, rather than utilizing person first language, and said reason has nothing to do with laziness. It has everything to do with the fact that autism is an integral part of who I am. Autism is not a disease, a disorder, or something holding me prisoner in a shell. Autism is a culture, a lifestyle, and a way of being. - Kassiane Sibley

kassiane.jpgBefore I start running my pen off, I'm going to offer a brief explanation of where this article came from. I stayed with Pennie Black and her family for several days because I had a tumbling competition in Detroit. Someone asked Pennie to interview me, but that is neither her nor my cup of tea (ooh! Metaphor!). As a sort of compromise, I am writing this: a few words (ok, more than a few) on a pet topic from a real, live autistic adult. Not an adult WITH autism - an AUTISTIC ADULT.

There's a reason I call myself an autistic, rather than utilizing person first language, and said reason has nothing to do with laziness. It has everything to do with the fact that autism is an integral part of who I am. Autism is not a disease, a disorder, or something holding me prisoner in a shell. Autism is a culture, a lifestyle, and a way of being. We don't try to cure people of being Chinese, because that is unethical and impossible. Nor do we refer to said people as "having Chinese tendencies," because that sounds stupid and we recognize that someone's nationality is part of WHO THEY ARE.

Autism doesn't yet get the respect as a culture that it deserves. People don't realize that autism shades into personality and is crucial to us remaining who we truly are. Because autism was woefully under-identified in the past, we are a relatively new disability culture. We are learning from the Deaf culture, and in many ways our struggles can be seen as similar. Like the Deaf, we autistics have a communication barrier with the majority of society, and people are always trying to cure both conditions. The former does not make the latter any more heinous. Autism, like Deafness, is a valid counterculture. To cure us would be to stamp out our whole way of life, and this is NOT good medical practice or the like-it is genocide born of xenophobia-a fear of outsiders. In many ways we spectrumites are the ultimate outsiders, but that DOES NOT make our way of being less worthwhile. This is why I and most other adults on the spectrum are anti-cure.

Allow me to make something perfectly clear: anti-cure DOES NOT MEAN anti-progress. Quite the contrary, I am strongly in favor of teaching spectrum kids the skills they'll need to live independently. This does not mean making them more typical, however; this means teaching practical ways around the challenges and also teaching the children to advocate for themselves so they can get their own needs met. The focus should not be on achieving normalcy, but instead on learning to live happily and productively AS AUTISTICS. The practical upshot of the above is this: kids shouldn't be running from therapy to therapy to doctor to therapy in an effort to train and medicate autism out of them to render them Indistinguishable From Peers. 

Autistic children ARE STILL CHILDREN, and the over-intensive programming just isn't age appropriate. All kids deserve time to just be kids, and so many spectrum children don't get that. I also think that the only time medication is appropriate is when it makes the person who takes it more comfortable-it should NOT be to make the parent's life easier. In fact, that is my criteria for most all interventions-if a special diet makes some children more comfortable, then it is right for that child. If occupational therapy lessens painful sensory issues, that's GREAT, sign me up too. If chelation makes a kid miserable but at least they are too tired to get into anything because of the stress on their body, that is NOT cool. Kids have lost kidneys to chelation, and I am against anything that dangerous. Kids are kids, autism or not, and I don't know any parents who would willingly put their typical children at that kind of risk. Autism is a culture. It's as much a part of me as my freckles, my Slavic ancestry, my tumbling obsession, and my whacky sense of humor. It makes me different, but it has shaped who I am, and who many of my friends are, and I wouldn't have us any other way.

Kassiane Sibley is an autistic woman in her early twenties, living in Montana with a friend on the spectrum and three cats. A former national tumbling competitor, she is getting back into training gymnastics and learning freestyle skiing after a hiatus for illness. Miss Sibley also writes and presents at conferences when the opportunity arises. Her favorite occupation is teaching autistic children self advocacy skills and gymnastics, because they are a future and they have a future.

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