Sunday, April 29, 2018

Autism Bewareness Month

It’s that time again.

The month of relentless puzzle piece imagery, blue lights and thinkpieces detailing the horrors of having an autistic child written by histrionic “warrior parents” abound. What should be a platform for actually autistic people to speak and advocate for themselves has been co-opted, and to express any dissent for problematic “awareness” campaigns is an invitation for an onslaught of haughty You’re Nothing Like My Child comments.

I was asked to write what I would like people to know about Autism Awareness Month as an autistic person, and quite honestly, the thing I most want people to know is that I am tired.

I am tired of defending my basic humanity and my right to exist.

I am tired of being told that I’m not like your child because I can write and communicate well, which is something that I’ve been working on my entire life. Your child has not (yet) attended an academically rigorous college with a strong focus on writing and speaking, so no, I wouldn’t expect them to be just like me in that regard--just like I wouldn’t expect any child to be as proficient in written communication as I am. Your child and I share a neurology, and that makes us more alike in ways you will never truly understand if you are not autistic.

I am tired of being told that I should call myself a “person with autism,” as though it’s some kind of accessory and not a fundamental aspect of my entire being. If you can’t remember that someone is a person without having to say “person with ____ ,” that’s a you problem. The overwhelming majority of autistic people prefer identity-first language, so it’s time to stop paternalistically insisting that we adhere to your conceptualization of autistic identity when it’s not your identity in the first place.

I am tired of living in poverty. 90% of the adult autistic population are un- or underemployed. All of us have valuable traits and skills, but even autism and disability-related nonprofits are guilty of not making accomodations for their autistic employees. So-called “Pre Employment” screenings that are a required part of many online job applications nowadays unfairly weed out the neurodivergent--they supposedly have “no right answer” and want you to answer truthfully, but unless you lie about your social deficits, you’re not getting an interview.

I am tired of being told I have no empathy by people who make no effort whatsoever to understand how an autistic person might express their empathy differently than a neurotypical person. I am very often overwhelmed by how deeply and viscerally I experience emotion, so it is absolutely necessary that I distance myself at times or else I would be in a constant state of emotional meltdown. Very often the people accusing us of having no empathy show none themselves when they vote to take our Medicaid, SSDI, Section 8 or SNAP benefits away, which are literal lifelines for the neurodivergent and other disabled folks.

I am tired of being told that I’m too “high functioning” to understand what “real” autism is. Being perceived as “high functioning” is its own kind of special hell, as I’m expected to have no deficits whatsoever. I’ve spent my entire life masking my autistic characteristics just to survive, and I am burned out. I can do just about anything the other neurotypical kids do, but it doesn’t mean I don’t have to spend days recovering from those things, nor does it mean that I never have meltdowns, go nonverbal, or self-harm when pushed beyond my limits. I struggle immensely with many aspects of adult life because of my executive functioning deficits even if I appear “normal.”

I am tired of the erroneous belief that autism only affects boys. From respected professionals in the autism field dubbing autism as an “extreme male brain” to lighting it up blue campaigns, the message is the same--autism is condition that predominantly affects men and boys. Many diagnosticians aren’t trained to assess how autism is perceived differently in women and girls, so they go undiagnosed and unsupported--many women only get their diagnoses when they have a child who is diagnosed. It’s even evident in popular culture. With few exceptions, autistic characters on TV are young, mostly white males like Sheldon Cooper (The Big Bang Theory), Shaun Murphy (The Good Doctor), Max Braverman (Parenthood), Sam Gardner (Atypical), and Abed Nadir (Community). There have been female characters such as Temperance Brennan (Bones) who are autistic-coded, but they are never formally diagnosed and are viewed more as cutesy amalgams of social awkwardness than nuanced and complex beings.

I am tired of the pathologization of autistic behaviors, most especially of “Quiet hands.” Stimming is a form of emotional self-regulation, and there is nothing inherently wrong with it. Forcing kids to stop harmless stimming behaviors is setting them up for failure, as they won’t have an outlet for nervous energy. Accept the comfort of your child over the perceived “weirdness” of the behavior. Allistic (non autistic) people stim all the time by tapping their pens or cracking their knuckles, and we don’t force them into compliance training over it. Autistic women are statistically very likely to be victims of sexual assault, and training them to be compliant and quiet for someone that has power over them is making them into an even bigger target.

I am tired of a lot of things, clearly, but what is most exasperating is that my voice and the voices of actually autistic people are continually silenced by mainstream “awareness” campaigns like Autism Awareness Month. We are the real autism experts because we live and breathe and feel and think with our autistic brains every day, but we are almost never included or consulted by parents, providers, or advocacy organizations. For many autistics, myself included, April is just another painful reminder of our marginalization from mainstream society, so we created our own campaign: Autism Acceptance Month. We wear #RedInstead, we donate what little money we have to autistic-lead self advocacy organizations, and we celebrate the beauty of neurodiversity and the inherent worth and importance of every autistic individual.

So many of us are so, so tired, but we work every day to make the world a little less terrible for your autistic loved ones because none of us want future autistic generations to suffer the indignities that we suffer. We suffer the slings of “You’re not really autistic” and “You’re too high functioning to speak for my child” because we truly, genuinely, and deeply care for your child. So this Autism Bewarness Month, please consider returning the favor by supporting actually autistic people, whether it be by supporting an autistic-run advocacy organization, advocating for more inclusive employment policies at your workplace, or even something as simple as retweeting or resharing an actually autistic person--a blog, a website, a video, interview, whatever. We expend a lot of emotional energy creating educational content for neurotypical folks, and very few of us get paid to do it. So please take some time in the remainder of this month and beyond to to listen to and engage with autistic activists without the needlessly defensive “You’re not like my child.” We are like your child, we are fighting for your child, and we are forever struggling in a world that doesn’t see our compassion, our insight, our brilliance, or even our full humanity.