A few months ago, I was sitting in the waiting room at my ophthalmologist’s office, reading an increasingly blurry issue of Forbes and trying not to listen to the conversation between another patient and her friend slash driver slash daughter-in-law. But I couldn’t avoid hearing a part of their conversation that simply broke my heart, and it went like this:
“[Mutual church acquaintance], you know, the one whose daughter had twins? They’ve just found out that both the kids are autistic.”
“Oh no! How horrible for her!”
“I know. It’s such a tragedy….”
Had the nurse not called my name at exactly that moment, I might have inserted myself into a strangers’ conversation for the first time in my life. How it would have ended I do not know, but it would have begun like this:
“Excuse me, but I couldn’t help overhearing that a friend of yours has autistic children. I just want you to know that I have autism too, and it hurts me deeply to overhear other people discussing autism like it’s a tragedy. We may not always show it, but we people with autism have feelings, we understand what you’re saying about us, and we want to be treated like real people, not failed ones.”
I remembered this incident in all its painful detail when guest-blogger-with-autism LydiaEncyclopedia kicked off Autism Awareness Month at Shakesville with a post calling for autism acceptance (which is well worth reading, comments and all). I especially remembered it after Shaker Livi asked an all-too-common question:
Also, I understand it’s insulting to have the attitude that autism is THE WORST THING EVER, but is it okay to acknowledge it as a bad thing that would be nice to prevent if possible? This question is really about severe cases of autism I’ve seen.
I understand where she’s coming from. I do. When neurotypical people (those of you who aren’t on the Asperger’s/autism/PDD-NOS spectrum) see those of us with autism avoiding eye contact or refusing to be hugged, you may think we’re unloved, unloving, or unlovable. When it’s time for the group photo and we’re the only ones staring in fascination at the ground instead of looking at the photographer, you may think we’re cold, obsessive, or unreachable. When we rock or flap our hands or burst into tears in a loud room (or even a quiet one), you may think we’re miserable, distressed, or unmanageable. And you think that a life of being unloved, unloving, unlovable, cold, obsessive, unreachable, miserable, distressed, and unmanageable is a tragedy of sub-human proportions.
And you’re right.
But the tragedy is not that we have autism. The tragedy is that we live in a world that would rather write us off as tragic than work to include us in collective expression of humanity. One of the things that bothers me most about the blanket neurotypical “acknowledgment” that autism is “a bad thing” is that it assigns “badness” to the autism itself, rather than to the desperate attempts people with autism often have to make just to survive in a neurotypical world that refuses to acknowledge their need – to say nothing of their basic human right – to inclusion.
For example: a few years ago, I read an article about echolalia (a condition in which the speaker takes all or part of what another person just said, but does not say words independently, which sometimes appears in people with autism) It included an assertion from a so-called “expert” that children with echolalia repeat words they hear “instead of trying to communicate.”
On the contrary – people with echolalia are trying to communicate. They’re going about trying to communicate with the skills and equipment they have, which are better suited toward using words they find in their immediate environment than arranging words stored in a mental “word bank” to create messages. Which is the “tragedy” – that some people communicate by repeating words they hear, or that not even the “experts” will acknowledge that these people are communicating at all, let alone help them learn to communicate to the best of their abilities?
Or, to put the thing in more immediate and accessible terms: I have meltdowns. A lot of autistic people do, regardless of their age. When some stimulus or combination of stimuli in my environment becomes intolerable and I can’t get away from it even though I’ve tried, I dissolve into an ear-covering, tear-streaming, fetal-positioned mess. Watching me melt down is distressing as hell to people around me, even those who understand that it’s a response to some sensation or input I just can’t take anymore and not some act of willful disobedience or my “autism demon” being autism-y. People think I must be in godawful miserable pain of some kind. And they’re right. I am.
But here’s the thing: neurotypical people do it too.
Neurotypical people also hit points in their lives where a sensory input is so awful that they simply cannot bear it one more second, where they are too distressed and in too much pain to do anything except scream or cry or kick things. Ask anyone who has had a kidney stone.
I don’t have meltdowns because I have autism. I have meltdowns because I am human. The autism simply makes me more likely to be distressed by things that the average neurotypical person might not even notice. For instance, the sound of other people chewing can cause a meltdown for me. So does attempting to navigate a new grocery store or the way microfiber fabric feels when I touch it. The fact that I can’t handle them isn’t a “tragedy,” but a circumstance of brain-wiring.
I am staunchly against a “cure” for autism. This surprises many of my neurotypical friends and family members, who can’t imagine why I would want to live in a world that makes me melt down regularly if there was any way to “fix” that.
I understand their confusion. But what I also understand is that my sensitivity to sensory stimuli, a result of my autism, is the dark side of a coin that also gave me a photographic memory, freakishly accurate spelling and language skills, and an IQ score I won’t say out loud because most people assume I’m either lying or bragging. My extraordinary sensitivity to detail means that, when I’m not medicated, I can remember things like the license plate number on every car my grandmother has owned in the last three decades, where exactly I put my keys when I left my house on October 29, 1994, and the entire text of any book I’ve read more than once.
It also gives me a rampaging case of obsessive-compulsive disorder that makes me dissolve into tears at the mere sight of movie-theatre carpeting. (Seriously, who designs that, and isn’t it time they chose a career where they aren’t allowed to assault people’s sense of taste?) To control the meltdowns, I’ve had to medicate away my memory and most of my writing abilities. I cannot imagine “curing” my own autism because I cannot imagine living in a world that lacks the extraordinary detail and living language that I experience thanks to my autism, even if the cost is steep.
Autism Awareness Month bothers me. I don’t like being treated like a “tragedy” who can’t participate in my own care or decide what medical interventions, if any, are right for me. I don’t like the fact that I can’t even attend most Autism Awareness events because my autism won’t tolerate bright lights and noisy crowds, and I don’t like the fact that even if I did attend, the program would most likely be around me but not include me. (Several autistic people of my acquaintance have gone to Autism Awareness events, only to find that the presenter asked who in the audience had a child or family member with autism, but never asked who in the audience had autism.) I do not like being told that I’m not one of “those” autistic people, or that autism only happens to children, as if it is something I will “grow out of.” I hate being treated as if I am not a human being because my brain is not wired the way most people’s brains are wired.
Were I in charge of Autism Awareness Month, I’d make it clear: people with autism are human beings and deserve to be included in the human community. If you must be “aware” of something, be aware of what you do, or do not do, to listen to people with autism and to help us function with the brains we have. Be on your guard: don’t treat us like tragedies or failed meat computers, and don’t let others get away with treating us or talking about us like we’re tragic, either. If you genuinely want to help persons with autism, treat us like we are people.