I remember my earliest days surviving in a world that wanted to change me, like a lightbulb that had burned out, a useless toy meant to be thrown away, unless it got ‘fixed’ through ‘training.’
I didn’t know it yet, but a label was stuck onto me like super glue:
The label was used to supposedly empower me, to reassure me that I am autistic, but not the bad kind, just the “Smart Kind,” the “Acceptable Kind.”
But here’s the truth about being pigeonholed into the “high-functioning” category: it sucks. High-functioning means you have certain societal privileges over other autistic people, yes. But high-functioning also means you aren’t believed when you ask for accommodations.
High-functioning means you’re expected to mask, to prioritize conforming to norms and expectations over your own survival. And high-functioning means you mask well enough to go through life without being told who you are, for the sake of “not wanting to label you early.”
Not only that, but acceptability politics (making things seem more acceptable to appeal to the mainstream) is harmful on its own, because if you’re a verbal cis-het genius with a “splinter skill” profitable to capitalism, who lives on their own and requires little or no obvious support except for being a bit disorganized, ableists see you as “one of the good ones,” as a pseudo-autistic that they’re not even thinking about when they discuss wiping us off the planet by means of selective abortion.
If you’re a nonspeaking AAC user with self-care difficulties and multiple intersecting identities, however, then you get turned into inspiration porn– at best.
“High-functioning” doesn’t say anything about an autistic’s needs, differences, personality, or functioning. It simply means that in a world that is violent towards marginalized communities, there is a chance you won’t die early because people in power hate your brain.
I don’t think that label is too empowering.
But it’s been hoisted on me since I was three.
And that label– especially the twisted implications of “high-functioning”– fuels ableist violence at three years old.
Other kids can be interested in alligators. For them, it’s called “passion” and encouraged. For me, it’s called “fixation” and restricted.
Other kids can flap their hands or tap a pencil. For them, it’s called “fidgeting” and ignored as a cute personality quirk.
For me, it’s called “restrictive, repetitive behavior” and scorned, withheld, therapied out of me with euphemisms like “quiet body” and being told to “self-monitor,” with a speech-therapist impatiently explaining that “your behavior makes kids think you’re strange” and that the reason they don’t say anything isn’t because they’re truly accepting, because no one will ever accept that; instead they’re “just trying not to be rude.”
“Normal” kids walk through life, being told to stay true to themselves even if it makes them stand out.
Kids like us are pushed through life, pressured to act as typical as possible, viewed as symptoms rather than humans.
Do you see the double standard here?
By second grade, I know I’m different.
I ask my therapist “why am I weird?” but she refuses to tell me the name for what I am. The closest thing I get to an explanation, after constantly grilling the professionals who are supposed to help me understand the world and my family who are supposed to enable me to be more “independent” (according to their standards), is “your brain is very smart, but works differently than other people, which can disable you.”
Not that there are people out there who are “weird” like me, that my form of weirdness has a name, that being autistic isn’t even weird at all. Just the ableist notion of intelligence to build up aspie supremacy at seven years old, and a biased Neurodiversity Lite model.
However, this isn’t sufficient. It doesn’t explain why the world treats me differently, why I can’t even move my finger without it being medicalized. I don’t feel disabled because of who I am, I feel disabled because of the way people see me. I’ve got a basic grasp on the social model of disability before I even know what disability is.
I get corrected every time I reveal my true self.
This time, I finally pick up on the message society is giving me: just another type of acceptability politics, modified for young children.
“Be yourself, but not like that.”
And the mask begins to fully cover my face.
I repress and suppress, hide the very essence of who I am.
Only to burn out later when it gets to be too much,
And the pain and effort is too much to bear.
At nine years old, I finally learn that there is a name for what I am:
I freak out, ashamed of this label that jumped out at me like a figure in a horror movie. “I thought I was just a normal kid,” I say.
The truth was, I never really thought that. But now I know the harsh reality: The reason society treats me like a victim…
Is because in their eyes, I am one.
I begin masking even harder.
Although now I don’t see it as unjust, as camouflaging my true self.
I simply see it as necessary.
I even try to convince myself that it’s actually good work that I’m doing: who wouldn’t want to integrate like a normal person, right?
I paint my mask in bright colors, telling myself it’s a positive part of life.
But a colorful mask is still a mask.
Internally, I know this.
But I keep trying until it burns me out at the end of each day.
Now that I know the “disease” I need to fight, it’s much easier to fight it.
Until the day I realized that it didn’t need fighting at all.
Because fighting autism, is fighting me.
And I am not the enemy to be fought, am I?
The enlightenment reaches me, and I finally realize the double standard evident for all these years.
After enlightenment comes acceptance.
I find true peace with myself, discovering my community.
I finally have the courage to throw the mask to the ground, and for the first time, I’m not shamed by society every time I do it.
After acceptance comes activism.
I begin actively pushing for the rights of every member of my community, every human on the spectrum; and more broadly, everyone on the spectrum of humanity. I accept being autistic, but I don’t accept our societal treatment.
After activism comes pride.
I started out not wanting to make a statement out of my existence, but it seems that in this society, when you’re outside the norms of what is typical, just breathing, just refusing to change yourself is a statement.
(And when you’re also nonbinary, transgender, and living under Trump, peeing is apparently a statement, too, but that’s another story.)
So I decide that if I’m going to make a statement, it better be a good one.
Pride is a powerful statement. In a world where anyone whose mind is not completely typical is shamed, suppressed, and silenced, pride is radical.
Because all this torture and misery, depression and repression, shame and guilt builds up strength. We have two outlets with which we can express that strength- we may express it in shame, or we may express it in pride. And we choose pride over shame, because we can’t afford to be ashamed of who we are.
In a world of oppression and stigma against anyone who is not perfectly neurotypical, where autistic youth are forced into conversion therapy and even trans politicians fund it, where the most vulnerable of us are left out in pseudo-inclusive advocacy, where we still have names to read for the Disability Day of Mourning, autistic pride is the best statement we can make.
It is the statement of not only rejecting, but abolishing, autistic shame.
It is the statement of a collective middle finger to respectability politics and “not like my child.”
It is the statement of joy and flappiness, pain and oppression, strength and resilience, rebellion and authenticity.
It is a statement of humanity, first and foremost, and of rebelling against the double standard.
- The Double Standard: On Growing Up Autistic - April 6, 2020
This makes so much sense. Well done!
A very powerful piece of autistic advocacy. Thank you for writing it.