Autism Spectrum Disorder, Fibromyalgia, and Invisibility
With one word, one look, it hit me that my experience really was abnormal.
With one word, one look, it hit me that my experience really was abnormal.
The “autism voice”—characterized by narrative devices and a detached character voice—tends to portray autistic characters as unworldly, hyper-rational blank slates defined purely by a series of unusual behaviors.
The two or three months I managed to get by on the reduced dose were enough to convince me: My psychiatrist is lying. I don’t need medication. I’m fine. I can beat this. Until, of course, I couldn’t.
A snarky New York Times column referred to CFS as “yuppie flu,” and oh, it was hilarious. Those silly rich people imagining themselves sick!
What you won’t be able to see when you first meet me is this: I’m a published author. I read all the time. I write all the time, too. I dictate, using an old-fashioned cassette recorder, and my mother types up my finished drafts.
Masturbation (and sexuality in general), particularly for girls, is widely stigmatized. But on top of that stigma, I had this body that was utterly different from the bodies around me. It was different and therefore wrong.
It’s clear that many people, including pre-diagnosis me, don’t know much about hypermobility; this only makes the need for representation more necessary.
Being autistic and also belonging to another minority might be one marginalization too many to sell children’s fiction informed by one’s own experience to a mainstream press, and that is a very sad thought.
A mistake I see a lot of writers who write about disability make is asking only one person for help. I’ve heard so many people say things like, “I have a cousin who is blind, and she read the book and said it was good at portraying blindness.”
I can feel their eyes on me. They’re all staring, judging.