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Coming Out AS

Updated on September 6, 2014

AS is a secret to the rest of the world. Even though it affects millions of Americans, autism spectrum is not a topic you can just bring up: “Thanks for inviting me over, and by the way, I may stare over your shoulder for some of the conversation and spend an extra long time in the bathroom because I find it taxing to try to guess what you are feeling.”

Today there are great support groups and understanding physicians who often do a great job of creating a powerful support network for many children with AS symptoms. This is a dramatic change over the situation when I was growing up in the 1980s. In a decade when something as devastating as HIV was being ignored by the medical and social institutions, it’s easy to imagine that ASD slipped through the cracks. There were few tools for understanding autism spectrum, and the dominant interpretation mainly consisted of blaming the mother for not being sufficiently loving. This family-oriented interpretation must have put a tremendous amount of pressure on the parents.

Thankfully, our understanding has shifted significantly. Support groups, specialized schools for AS children, therapists and research specialized with a well-honed sense for the immense complexity of the “disorder” – these developments have helped us to grasp the larger dimensions of autism. But no matter how much support AS children and their families experience, eventually this will all fall away. If you make friends outside your support network, attend school or college, start a career or get into a relationship, you will find yourself eventually facing the uncertainty as to how you can explain yourself.


Living in an Neuro-Typical World

Living in an NT world means always being an outsider to the social norms and expectations that control society. Still today, I find that I have to coax myself out of the house sometimes because I don’t want to give up the safe haven I have created in my little universe to face the unpredictable and often unfriendly response I get outside. Sometimes I try to explain this in strong terms like this: Being AS in the US today is similar to being a feminist in the 1960s, an out homosexual in the 1970s, or a politicized “disabled” person in the 1990s. This is a big claim, I know, and I usually find that people outside of my support network balk at this analogy. But if we think of this claim from an AS perspective, it may start to make sense. We generally look like the people around us, but we see the world entirely differently; from our hair follicles to our toes, we are not “normal,” and this means that the social institutions and assumptions are not made for us.

I constantly find myself wondering how to “come out” to people I know. The benefit is that, if they are accepting, it eases some of the tensions that inevitably develop when I do something that they experience as rude or thoughtless. The risk is that they will find it weird, or nonsensical. I have the feeling they mix the specific symptoms of AS with everything they may think about “disorders,” from epilepsy to Down Syndrome. Some will go and research AS, and come back expecting that I have every one of the symptoms, which introduces the complicated process of explaining what the spectrum is and how it sometimes works and sometimes doesn’t work as a diagnostic tool. Overwhelming, my experience in these scenarios is that I’m not normal, because normal people don’t have to explain themselves. Increasingly, if a person identifies as feminism, queer, or differently-abled, society has tools for recognizing this and making space for them.

I’d like to think that one day AS will be considered a kind of “mental queerness” that is strange and interesting and beautiful because it is such a different way of having a human mind. For now, there is a closet where the secret life of autism spectrum is kept hidden away from an NT world.

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