What I Can Tell You About Autism 

Alright, I admit it. I’m not a psychologist, social worker, psychiatrist or employed worker in the brain field of study. I’m not one of these people who have book-learned autism from indirect experience. That does not mean I am completely worthless considering the experience of autism, even though the vast majority of people, including autism parents, think I am worthless because I am autistic.

I can tell you about the shame I feel when people will not vaccinate their children to make sure they are not like me.

I can tell you about the hate I feel when I hear people wanting to “cure” the world of me.

I can tell you about the times I was taken advantage of because nobody wanted to actually teach me how to navigate social situations.

I can tell you the countless times I was awkward because everybody else learned social skills by osmosis, or so it seemed.

I can tell you about how I was forced to sit with the teacher at recess because I would get too frustrating for untrained people to run and play.

I can tell you how your attitudes toward autistic adults will negatively affect relations with your future autistic adult, aka your autistic child.

I can tell you the shame of knowing that there are people who, in the words of one of those people, say I “suffer from nothing,” aka my experience does not count.

I can tell you why I would rather spend my time online, talking with other autistic people, instead of trying to explain my struggles with those who stop up their ears and refuse to listen and understand.

I can tell you about the times I cried from childhood bullying.

I can tell you about the abuse I suffered at the hands of my siblings, who would insist I deserved every bit of financial, mental, emotional and sometimes physical abuse.

I can tell you of the rejection when said siblings finally sent me home to my mother, because I did not satisfy every monetary greed enough for them.

Fortunately, I can’t tell you of a time I was raped. Unfortunately, many of my autistic sisters can. I was lucky there.

I can tell you of rejection.

I can tell you of the wish for me to be a recluse, away from the world.

I can tell you of a time I wanted to die.

I can tell you now that I crawled by myself out of the hole of despair.

I can tell you of finally learning I was not quite so alone.

I can tell you that I have finally learned to accept myself as a lovable, worthwhile person.

I can tell you that I have a true and acceptable experience, no matter what society thinks.

I can tell you that acceptance has been the only thing which has given me permission to go on living.

I can tell you now that I understand how rejection from family members has nothing to do with me, only with them and their baggage.

I can tell you that I now understand people love me, that I’m worth loving and caring about.

Would you tell a flying bird that they do not understand how to fly? That’s what you are doing when you are telling me I do not have a good enough viewpoint with autism.

Disability is Not a Costume 

I am coming off a brilliant performance of Benedict Cumberbatch as Richard III in “The Hollow Crown: The Wars of the Roses,” a sort of Shakespeare showcase of linked historical plays. I am happy he did the performance; he did it well. What I am not happy about is that soon it will be put into the long history of abled actors donning disability like a costume, as if they can really draw upon direct experience.

It’s hard to pinpoint what exactly is disturbing me about abled actors portraying disability. Is it the lack of direct experience? Is it the donning and doffing of disability like a regular Halloween costume? Is it the presumption that we actually disabled can really do that? Or is it that it seems like a version of a white person doing blackface? Maybe it’s as if we actual disabled are not good enough to provide our own voices. Why is that? If the mathematicians in “Hidden Figures” were played by white women in “black makeup,” would it not cause outrage due to the casting? Yet, because we are disabled, such outrageous assumptions like stupidity, incompetence and inability to act are foisted upon us, causing the “need” for abled actors to don disabilities like costumes, only to toss them off later. It’s a terrible thing to consider; that I’m not good enough to provide my own voice. Does anybody else want to feel this way?

Now, I can sense some people think I’m picking on Benedict Cumberbatch. That is not my aim. I just hope that he had at least one or more consultants who could put a sense of competence into his performance. I think he did; see, when his Richard III is on horseback or in battle, he is just as elegant and competent with the horse and sword as his brothers. It seems like light is breaking through, but I’m not so sure.

My aim is simply this: to help people to understand that, at the end of the day, real disabled people still feel shunned by the film industry, unless it is reality TV aimed specifically at showcasing disabilities, like A&E’s “Born This Way,” about people with Down Syndrome. With my known condition, and the glacial pace that the film industry is moving, it’s going to be a long time before I really feel represented in film, beyond the inaccurate portrayal by Dustin Hoffman in “Rain Man.” Oh, how I wish I could shed that image!

Musings on Stigma and Ableism 

I once had a friend who preferred going in and out of mental health hospitals to actually taking mental health medicine. When we confronted her about it, she felt that the medicine was “stupid” and would still not take it. I suspect, however, that there was something else at work in her brain. It somehow reminds me of country star Mindy McCready, who eventually committed suicide after learning she had been living with a mental illness. I myself am not immune to this type of thinking. I have had trouble with concealing my autism as well as revealing it. This kind of tension should not be. I mean, it’s a choice between “You’re a Weirdo and We Don’t Like You” or “You Poor Unfortunate Soul! We Still Don’t Like You!” So what am I supposed to do? I confront stigma and ableism on a daily basis.

When “The Accountant” came out with its cold-blooded killer “autistic savant,” I confronted stigma. When I see people deciding not to vaccinate their children because they don’t want said children to be like me, I feel stigma. When I was told “You suffer from nothing” by a (former) friend, I confront stigma. While I mostly act neurotypical, when I don’t, I am told either explicitly or implicitly that I “know better” and I ABSOLUTELY MUST ACT NEUROTYPICAL for the sake of other neurotypicals. I am never allowed to be my autistic self, unless I am completely alone or with only my mother. It is a vicious cycle. It seems that without my mother or the internet, I would be completely alone with nobody to understand me or my condition. I am considering moving to a low-income area near a center focusing specifically on autistics after my mother passes on, to be honest.

Don’t even get me started on the ableism I got from my sisters. For example, if I did any stimming at all, I was yelled at to stop. I was often told to sit down and shut up. They mocked me for sitting on my hands to stop the stimming; but that was the only way. Of course, after my sisters unceremoniously sent me back to my mother after telling her I was a horrible person, I had to pay back Social Security thousands of dollars due to their handling of all my money. Of course, they will deny all this. Anyway, abuse is a common effect of ableism and stigma.

Let me explain why I put ableism and stigma together. They work together. Stigma about having something wrong with you feeds discrimination for the  able bodied and able minded. The neglect of people to, say, allow an access for a wheelchair-bound person feeds the inability for that person to be there, even if they are the person of honor at the event! Hopefully, my mother won’t need to speak at church; she can’t even get up on the stage. Oh, and another thing about stage access: If you see my disability as an “acting challenge” that you can put on as if it were simply a costume, you are wrong. Can you draw on being disabled yourself, “Rain Man” actor Dustin Hoffman? DO you know what it’s like to live with the pity, “Ray” actor Jamie Foxx? Can you handle constantly being told your kind is a scourge to be eradicated, Daniel Day-Lewis? No, because nobody ever asked us what it was really like to be us! In Hollywood, we disabled are a forgotten bunch of sideshow freaks cordoned off from the main attraction, hid in the back to be feared and pitied at the same time. We are too scary to be on TV, unless you treat our disability as a costume. I hope someday your disabled performances are as offensive to us disabled as blackface is. I digress; my point is, ableism and stigma are connected; they’re practically siblings.

What can we do with my friend who used to cycle in and out of mental hospitals due to the stigma of taking care of your mental health? Self-care is not a glamorous spa experience. How can we say “There is nothing wrong with taking your medicine,” when we as a society mock and ostracize people who take medicine? How can we say “We want you at our protest/ceremony/place of worship” when they can’t get either in the door or on the stage? How can we, and this is a personal one, say we are supporting autistic people when we will not take a measure or two to prevent sensory overload or meltdown? Society, we need to change. We need to not view disability or mental illness as a moral weakness or failure. (This viewpoint dates back to Biblical times, as does Jesus’ response: John 9) I hope we can before the disabled do what other marginalized groups are doing: resorting to their most frightening stereotypes.