Too Short for a Blog Post, Too Long for a Tweet 405

 

Here are a few excerpts from a book I recently read, "Unmasking Autism: Discovering the New Faces of Neurodiversity," by Devon Price.

 

Refusing to perform neurotypicality is a revolutionary act of disability justice. It’s also a radical act of self-love. But in order for Autistic people to take our masks off and show our real, authentically disabled selves to the world, we first have to feel safe enough to get reacquainted with who we really are. Developing self-trust and self-compassion is a whole journey unto itself.

When I look at a person’s face, I don’t simply see “happiness” or “sadness” radiating off them, for example; I see minute changes in their eyes, forehead, mouth, breathing, and posture, which I then have to effortfully piece together to make an informed guess about how they feel. Often, it’s too much discordant data to make sense of. When I don’t have the energy to carefully process others’ emotional expressions, people are inscrutable to me and arouse a lot of anxiety.

The idea that Autism is a “boy’s” disorder goes all the way back to when the condition was first described at the turn of the twentieth century. Hans Asperger and other early Autism researchers did study girls on the spectrum, but generally left them out of their published research reports. Asperger in particular avoided writing about Autistic girls because he wanted to present certain intelligent, “high-functioning” Autistic people as “valuable” to the Nazis who had taken over Austria and were beginning to exterminate disabled people en masse. As Steve Silberman describes in his excellent book NeuroTribes, Hans Asperger wanted to spare the “high functioning” Autistic boys he’d encountered from being sent to Nazi death camps. Silberman described this fact somewhat sympathetically; Asperger was a scientist who had no choice but to collude with the fascist regime and save what few children he could. However, more recently unearthed documents make it clear that Asperger was far more complicit in Nazi exterminations of disabled children than had been previously believed. Though Asperger held intelligent, “little professor” type Autistics close to his heart, he knowingly sent more visibly debilitated Autistics to extermination centers.

Hiding self-destructiveness behind a mountain of achievements isn’t functioning, not really. The very concept of “functioning status” is predicated on the logic of capitalism and the legacy of the Protestant work ethic, which both have trained us to believe that a person’s productivity determines their worth.[94] No one is more harmed by this worldview than the disabled people who cannot work and produce value at all, and are the most likely to wind up abused, forcibly institutionalized, or homeless as a result. Equating a person’s social value (or even their right to exist) with their productivity is sadly a common outlook, but it’s also a profoundly alienating and ableist one. It harms the Autistic people who are able to “play the game” and mask as productive and respectful; for the Autistics who cannot play along, that game can quickly turn dangerous, even deadly.

Neurotypical brains engage in sensory adaptation and habituation: the longer they are in the presence of a sound, smell, texture, or visual cue, the more their brain learns to ignore it, and allow it to fade into the background. Their neurons become less likely to be activated by a cue the longer they are around it. The exact opposite is true for Autistic people: the longer we are around a stimulus, the more it bothers us. As I’ve already mentioned, our neurons are also “hyperexcitable,” meaning our senses get set off more easily by small input that neurotypicals don’t even notice, such as a hair falling into our face or a pile of mail being left on our desk. We’re better at noticing small details and changes in our environment, which can be a real advantage for meticulous work (like programming, Thomas’s profession), but we are also more prone to being startled or distracted.

When an Autistic person is flooded with upsetting sensory information for too long, they enter a state of sensory overload. Sensory overload can look like a temper tantrum or a crying fit, it can take the form of a shutdown or meltdown, or it can present as the Autistic person becoming confused and responding to questions in routinized or nonsensical ways. Sensory overload makes it hard to complete complex tasks, think through things rationally, or manage emotions. When we’re overloaded, we become irritable, or filled with despair; we might even start self-harming to get an endorphin rush or ground ourselves. Our bodies are visibly tense with anxiety, and we’re difficult to engage with during these times. What non-Autistic folks often don’t realize is that Autistic people experience intense sensory input as if it were physical pain.

Unfortunately, when an Autistic person complains about the sensory pain they’re in, people think they’re being overly dramatic, needy, or even downright “crazy.” I can’t fully convey how frustrating it is to be in deep distress over a persistent noise my boyfriend can’t even hear. When I find myself stomping around the house anxiously, pounding on the floor with a broom to get my neighbor to turn down her music, I feel like I’m being “crazy.” My partner knows I’m not making this stuff up, and he tries his best to be accommodating and patient. But for most of my life, people were unsympathetic to my sensory complaints. They acted as if I chose to be distracted and furious every day.