It's Time to Take Back April! Autism Acceptance Day and Month. 2017: Two events- April 1-15 going on NOW at https://www.facebook.com/events/228936064515212/, and second half of the month event here: and https://www.facebook.com/events/588631584829848/ ACTUAL ACCEPTANCE, not "tolerance," not "I accept you but not your autism." The intention is *radical* acceptance, not ABA, not compliance training, not "fitting in," unless we make that decision on our own.
Lately, I’ve been troubled by articles in the New York Times and The Daily Beast that imply that people with Asperger’s are not on the autism spectrum, but are merely shy or quirky. I’m not going to get into discussing the specific content of the articles, because Emily Willingham has already done a brilliant critique of both pieces.
What I want to address, from a different perspective, is the idea that anyone who “passes” as non-autistic for some portion of their lives (and by “passing” I mean “acting in a way that doesn’t look like someone else’s autism stereotype”) can’t possibly be autistic. This line of reasoning is so old and hackneyed that it’s rather wearying to keep speaking to it — mainly because it’s difficult to know exactly how. If I start describing all my difficulties for someone asking me to “prove” it, I’m blowing my privacy and giving away my power; after all, if I assert a disability identity, I certainly shouldn’t have to explain how I came by it. Besides, the whole act of explaining is a fool’s errand, because in the discourse of autism, if I can explain what autism feels like for me, I can’t be autistic.
I’d been rather stuck in this quandary for some time, and then yesterday, I was reading Tobin Siebers’ Disability Theory, and I stumbled across a passage that was, in a word, life-changing. It touches upon the ways that the late Irving Zola adapted to living with the fatiguing effects of post-polio syndrome:
“Piqued at continuing to inconvenience myself,” Irving Zola writes, “I began to regularly use a wheelchair” for excursions to the airport. “I thought that the only surprise I’d encounter would be the dubious glances of other passengers, when after reaching my destination, I would rise unassisted and walk briskly away.” (205). Zola is able to make his way through the airport at the beginning and end of trips, but the overuse of energy may mean that he will not have enough strength later in the day or the next day to meet his obligations. He turns to the wheelchair because traveling requires overcompensation, and people with disabilities are never more disabled than when they are overcompensating. “Just because an individual can do something physical,” Zola argues, “does not mean that he should (232).” (Siebers 107)
Pause a moment to take in the key statement in this passage:
People with disabilities are never more disabled than when they are overcompensating.
For so many of us on the spectrum who can “pass” to one degree or another, especially those of us who were diagnosed in mid-life, overcompensating is how we have lived our lives. For most of my life, I struggled to hear people in noisy places rather than simply blocking my ears and easing the impact of noise on my nervous system — the equivalent of Zola using a wheelchair to get through an airport. I sprinted to keep up with rapid-fire conversations, despite my auditory delays, my inability to use nonverbals, and my need to translate all of the words flowing like an endless caption in my head to speech. I smiled politely in conversations that bored me to death while struggling just to keep up with the words, and I said all the “right” things in response — or did I? I was gracious to people who recognized my difference despite all my spectacular attempts to hide it, and who drew away from me because I wasn’t like them. I spent most of my childhood and young adulthood learning social rules, only to find that they only went so far, and then I kept trying doggedly to make them work for me anyway. And I did all of these things, every day, for decades, until I was exhausted beyond most people’s comprehension.
I overcompensated wildly to do all the thing that “normal” people are supposed to do, and now that I’ve done them, I’m told that I must be “normal.”
I realize now that those who say such things don’t simply misunderstand autism. They misunderstand disability. They are wholly unaware of the amount of overcompensation we must do just to keep up with a world made for able-bodied people.
Let’s get this straight: Overcompensation is not an indicator of normalcy. It’s an indicator of disability. And the oddest part of a distinctively odd life is that many of us have been disabled from birth without knowing it because we were so good at overcompensating. We are rarely talked about in disability circles, where one hears of two separate groups: Those who were born disabled, and those who became disabled as the result of illness or injury. Always in these representations, those who were born disabled tend to have an easier time with disability identity than those who became disabled later on and have to deal with the disjunction of past and present selves. But where do we late-diagnosed folks fit into this rendering? We are disabled from birth, but we didn’t know it until later. And because we didn’t know it all those years, and just lived our lives overcompensating with every breath, we are told that we are not disabled now and that we never were.
Many of us get weary answering the doubters, because there is no clear paradigm for addressing our particular paths. But overcompensation is a huge part of understanding our experience of disability and disability identity. I thank God that I gave myself the permission to adapt, to rest, and to work around my disabilities before I exhausted myself any further. All of those actions — overcompensating, adapting, and resting — are signs that I am a disabled person, appearances notwithstanding.
Siebers, Tobin. Disability Theory. Ann Arbor: The University of Michigan Press, 2011.