Autism In Our Own Words

Awakening Our Power
by Meg Evans

Today’s world is far busier than at any time in the past. Everywhere we look, we’re faced with many choices to make and complicated details to track and organize. It’s no wonder that so many people lead lives of constant stress, always worrying that there’s too much going on and no good ways to keep up with it all. Making wrong choices, losing track of things, and not getting enough done seem inevitable.

Of course, anxiety only makes everything worse; but if we don’t feel in control of our daily lives, then how can we get those worries to go away? And until the worries go away, how can we feel more confident? Many of us struggle with this dilemma. It can be especially challenging for people with disabilities, whose needs are by definition (under the social model of disability) not adequately supported in present-day society.

Autism, in particular, often is associated with anxiety. Definitions of autism generally mention self-calming repetitive behaviors. Many people view such behaviors not as an intrinsic part of their autism, however, but as symptoms of anxiety caused by living in a world that can feel overwhelming and extremely difficult to navigate, with information often coming too fast to process.

I believe that it’s helpful for any of us, whether or not we have a disability, to keep in mind that we do have the power to change our personal environment. Even though we can’t control much of what happens in the world, we can create peaceful, nurturing homes and workspaces that lovingly support us as we go through our days. We can awaken our power by making small positive changes to our routines and surroundings, which reinforce and build on each other as time passes.

When I feel stressed about something I’m trying to do, I stop and ask myself: Does this need to be done now, or at all? Are there more comfortable ways to do it? Should I ask for help instead of trying to do it myself? Sometimes anxiety makes us forget that we have other options; but in reality, there are almost always better alternatives, if we take enough time to discover them. Rather than letting ourselves get overwhelmed, we can step back from the situation for a moment and consider ways to simplify it.

Awareness Has Done Its Damage
by Daniel Obejas

(Editor’s note: This piece comes with trigger warnings for child abuse and murder.)

We are gathered here to celebrate Autism Acceptance Month, while recognizing that we are describing the celebration by an unpopular name: Acceptance, not awareness. We understand this because awareness is not only history, but the present that we hope to change.

Awareness on its own is not a bad word. It’s important to know about issues that affect the society around you, especially when you’re among the affected. Knowledge is generally preferable to ignorance. Knowledge is also a component of acceptance.

The problem in the world of autism is that the popular model of an awareness campaign originates, and perpetuates, within a medical perception of autism. The parent and professional community has taken note of popular campaigns regarding breast cancer, HIV, smoking-related conditions and so forth, and simply copied those strategies, under the assumption that autism is correctly classified as a disease or disorder.

This sort of campaign typically focuses on the protections that prevent spreading the disease, medical treatments, and the ill effects that incentivize avoiding contagion. Of course, there are no precautionary measures against catching the autism virus, and no method for the equally absurd notion of a cure. Perhaps most obviously, autistic people do not suffer from autism.

So what is left to be made aware of? A comprehensive map of autistic behavior and experience? In practice, we’ve been far from successful at that. I was once told in a report from a certified psychologist that “no repetitive movements were observed” after watching me one-on-one for an hour, stimming continuously. I have been told that I “don’t look autistic” or that you’d “never suspect” I was autistic while wearing a battery communication necklace, spinner ring, a chew toy, a noise-reducing hat, sunglasses, and flapping.

I contend that autism awareness accomplishes nothing more than repetition of the word autism. With that in mind, I must ask who has not already heard the word autism. Is there some Amish family in the mountains, living off of a tofu farm? Is that who we’re raising awareness for? I jest. I know that the real beneficiaries of autism awareness are the various corporations with “autism” in their names.

When awareness continues to be promoted after we’ve already learned the word, the nature of the message usually transforms into one of burden and tragedy. We need to keep bombarding you with these messages until you’re adequately scared of this horrible affliction! Even my friends and family can think of me as less of a person because of an identity that constitutes the entirety of my being. It is not difficult to imagine how that would be harmful to someone’s relationships, opportunities, and self-esteem. Awareness is the cause of this harm, not the antidote.

When Daniel Leubner’s mother burned him alive, she was aware that Daniel was autistic. When Kyle Dutter’s father shot him, he was aware that Kyle was autistic. When Scarlett Chen’s mother drowned her, she was aware that Scarlett was autistic. When Katie McCarron’s mother suffocated her, she was aware that Katie was autistic. When Marcus Fiesel’s parents suffocated him, they were aware that Marcus was autistic. When Glen Freaney’s mother strangled him, she was aware that Glen was autistic. When Daniel Corby’s mother drowned him, she was aware that Daniel was autistic. When Melissa Stoddard’s parents suffocated her, they were aware that Melissa was autistic. When Randle Barrow’s mother drowned him, she was aware that Randle was autistic. When London McCabe’s mother threw him off a bridge, she was aware that London was autistic. If the length of this list bores you, let me remind you that those people no longer have the luxury of being bored. Their lives were lost because the people who supposed to ensure their safety were instead afraid. How many times does a parent have to murder their child before we realize that the problem isn’t that we just haven’t raised awareness enough?

Acceptance is not just a positive attitude. It is a necessity. It is a matter of urgency. We the Autistic understand this, and we will not be safe until you understand as well.

 

To learn how to submit your own writing about what autism and autism acceptance are, click here.

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