Going Mask Off

I've worked six jobs in my life, not counting internships and gig work. All but two of those jobs I lost for being autistic. That’s not what it said on paper, of course; the official reasons varied, but the effect was the same. So I get impatient with advice about autism that’s focused on “unmasking”.

I think that autistic people should be free to express ourselves however feels natural to us. But I’ve always worked high-masking jobs— childcare or the non-profit industrial complex. The emotional labor required in both of these fields infamously leads to burnout, even for non-autistic workers. So it’s always felt a little cruel to read about how painful and self-destructive masking is, when authenticity is a luxury I quite literally could not afford.

But conforming to neurotypical norms does take a toll. When I was last employed, I was having almost daily panic attacks about work. This was a relatively accommodating position; my bosses agreed to write out task assignments rather than communicating them verbally, in accordance with the ADA. (They were the first to do this). My boss was gay and neurodivergent, in an expansive sense of the term; he considered himself a leftist. None of this changed that he was my boss. I once again found myself falling short of unspoken expectations; I was once again fired.

Like every politically engaged autistic self-advocate, I’ve been told by “autism parents” that I’m too high-functioning to speak for autistic people. This is the only context in which anyone has accused me of functioning well. In the context of my other disabilities, struggling to maintain employment and live independently would be considered a sign of profound disability. But since autism is primarily a “disorder of social communication”, my ability to type paragraphs and modulate my spoken tone overrides these struggles. Or something.

I don’t conceptualize autism as a disorder of social communication. I subscribe, mostly, to the neurodiversity thesis: that what we call “autism” is a naturally-occurring variation among humans, which is only disabling because our society is not structured to accommodate it. Where I diverge with some neurodiversity advocates is in my adherence to the social model of disability, as an animating political principle not reserved for autism alone.

The social model emerged from the 20th century disability rights movement and holds that disablement is caused by the interaction of an individual’s impairments with unaccommodating physical, social, and/or economic environments. In the case of my POTS, for instance, an impairment is my inability to stand for more than a few minutes at a time. This impairment is disabling because the apartment I can afford to live in is not wheelchair accessible. (I’m working on fixing this). And the same goes for autism.

Many autistic self-advocates claim that autism is not a disability, because it would not be disabling in a world that accepted and accommodated autistic people. But the social model tells us this is not unique. I have seen some autistic self-advocates claim that autism is distinct from other disabilities because there are no impairments inherent to the “disorder”. Proponents of this claim point to studies on the double-empathy problem to show that autistic people don’t struggle to understand social cues: we just struggle to understand neurotypical social cues, just as they struggle to understand ours.

I'm not sure that there's any one set of “neurotypical social cues”. Claims that neurotypicality is a culture, or generalizations about “typical” behavior, seem to massively discount actual cultural differences. Many cultures find eye contact disrespectful; these cultures do not consist exclusively of autists. I understand “neurotypical” the same way I understand “cisgender”, as exonyms used to describe groups not experiencing the same social oppression as autistic and trans people. I don't see either category as essential.

Moreover, I think focusing on whether or not we misunderstand social cues is still accepting an anti-autistic framing of what autism is. Most autism researchers and clinicians focus on easily visible behaviors, thus prioritizing an external view of autism over autistic people’s internal experiences. Defending atypical social behaviors, or other visible indicators of autism such as stimming, is important for resisting institutionalized abuses of autistic people. But I don’t think conceptualizing autism through the lens of atypical behavior actually helps us grok the phenomenon we’re talking about. 

I instead understand autism as a kaleidoscope of sensorimotor differences, some of which result in impairment. For instance, my autistic profile features significantly delayed auditory processing. This does not have to be socially disabling; employers could accommodate it more reliably than they do, I can watch TV with subtitles and ask my friends to repeat themselves. But it’s nevertheless true that my auditory processing is impaired.

What counts as an impairment is still subjective. Some autistic people consider our difficulties making eye contact to be an impairment; some consider it a preference, while others say “it’s weird that neurotypicals want eye contact so much”. Understanding disablement as an especially social process does not mean that impairment exists in a vacuum. 

I emphasize impairment here in order to push back against the popular narrative of autism as a “superpower”, a narrative which separates autistic people from everyone else disabled by capitalist society. Many people's autism profiles come with intense interests, special skills, or similar strengths. But we shouldn't have to earn our rights to accommodation, autonomy, or full personhood by proving that our disabilities are strengths. We deserve these things because we are human beings.

I have a very old-fashioned, Tumblr-imbued ethic of “centering the most oppressed”. Obviously “most oppressed” is not quantifiable, and experiencing oppression doesn't necessarily mean your analysis is correct. But when it comes to autism, this ethic leads me to emphasize the experiences of autistic people living in group homes and other institutions, or living with their families-of-origin to survive, over those of us who are able to live more or less independently. These are the people who “autism as superpower” tends to overlook: not because they are any less talented or passionate, but because they are impaired in ways our society punishes instead of accommodating.

This is, once again, a social division rather than a natural one. To quote autistic self-advocate Ellen Murphy, “‘High-functioning’ is used to deny support. ‘Low functioning’ is used to deny agency.” I reject these classifications, and I nevertheless understand that they have material consequences. Unfortunately, the unmet support needs of autistics deemed “high-functioning” lead some of us to idealize the imagined alternative. I commonly see late-diagnosed autistic people wish they'd been diagnosed in childhood; meanwhile, my friends who were diagnosed as children are still unpacking the trauma of ABA therapies and carceral special ed, with no additional supports in adulthood to show for it. To use some loaded language, I think there's a failure of empathy happening; an inability or unwillingness to see outside one’s own experience of autism to understand someone else's. I think the fetishization of “unmasking” is another such failure.

The most “unmasked” autistic people, those of us who flap and rock and say whatever words or sounds come to mind, are not living lives of unencumbered freedom. They instead bear the brunt of ableist policing, employment discrimination, and psychiatric violence. Autism influencers who suggest unmasking are implicitly qualifying this with “in a safe setting, when you can get away with it”. If we're going to keep suggesting individualized unmasking as a solution, I'd humbly suggest that we work to make sure all of us can get away with it. That means dismantling policing and guaranteeing housing and independent living supports, as a starting point. I know that's a little harder than an infographic.

I'm Reading

I'm on chapter 2 of Let The Record Show: A Political History of ACT UP New York, 1987-1993. Sarah Schulman really emphasizes the influence of second-wave feminists and reproductive rights activists on ACT UP’s patient-centered politics. I don't typically associate patient-centered politics with feminism, likely because of my own experiences with coercive, transphobic feminist therapists. But the lineage checks out.

On My Mind

I've been having an OCD relapse recently. First it was replaying conversations I've had with friends, fixating on any part where I might’ve said something wrong. I got some solid reassurance that these friends weren't actually judging me, so it's off to a different theme, for now. Next up: a playthrough of all of my most cringe behaviors between the ages of 15-19.

Sometimes I try to neutralize the intrusive thoughts, by saying “stupid stupid stupid” or pinching myself very hard or getting high so I don't have to think about it anymore. Other times I do what I'm supposed to do, and lean into the discomfort. I performed one of the raps to Nathan on the phone, who said it was “surprisingly good” (thanks?). I almost had a panic attack in the process. Then I posted about it.

I have to be careful not to lean too far into this, because confessional compulsions are also a symptom I experience. But it's decent DIY exposure-response prevention: I share the terrifying information, sit with the anxiety that causes, and don't do any rituals to avoid that discomfort.

I'm hoping these intrusive thoughts aren't indicative of a more serious relapse; I've been doing pretty well the past month or two, but the last few weeks have been stressful. I've fought off far worse OCD though; my brain used to hit me with “what if I'm a misogynist rapist abuser monster?”, I'm pretty sure I can handle “what if I was a cringe teen”.

Secret Third Thing

I love my new tattoo.