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Chapter 1
What Is Autism, Really?
When Crystal was young, she exhibited many behaviors psychologists today would recognize as traditionally Autistic: she lined up toys in rows instead of playing pretend with them, chewed on her blanket while staring at the wall, and had trouble understanding in-jokes and teasing. But she didn’t “look Autistic enough” to get easily diagnosed in the 1990s, when she was growing up.
“My mom actually thought I should get assessed,” she says. “But my grandpa shut it down. He was all, no, no way, Crystal’s such a good girl! There’s nothing wrong with her. Don’t even think about stuff like that.”
Crystal’s grandfather probably figured he was protecting her from getting stuck with a label that would bring a lifetime of abuse. He certainly isn’t alone in that. Label avoidance (taking steps to evade diagnosis) is a very common consequence of disability and mental health stigma. Publicly identifying as disabled does mean being viewed as less competent—and less human—by many people. As damaging and self-defeating as it can be to camouflage one’s disability status, it is by no means a paranoid act. It’s a rational reflection of the prejudices disabled people face. It’s not unique to Autism, either; many people with mental illnesses and hidden physical disabilities elect to avoid the mark of shame a diagnosis might bring.
My dad hid his cerebral palsy and seizure disorder for his entire life. No one knew about his condition other than my grandmother, my mom, and eventually me. He never went to college because he would have needed to reveal his access needs to campus disability services. He only ever applied to jobs that didn’t require him to write or type, lest his poor fine motor control be revealed. As a child, I typed up the flyers for his lawn mowing business, because he couldn’t work the computer himself. I only found out about his condition as a teenager; he sobbingly confessed it to me, as if it were a terrible secret, after his marriage to my mother had already fallen apart. He told me that his mother had made him hide his condition because it wouldn’t have been acceptable to be openly disabled in the tiny Appalachian town where he grew up. Shame and self-loathing followed him until the day that he died of diabetes (a condition he developed as an adult and also refused to treat).
I didn’t find out I was Autistic until many years after his death, but he was the first person who demonstrated to me just how painful and self-destructive hiding your disability can be. He had erected an entire life around hiding who he was, and his defensive mechanisms had slowly killed him.
Label avoidance was common among the parents of potentially Autistic children during the 1990s, because the condition was so poorly understood and demonized. Autistic people were assumed to be intellectually disabled, and intellectual disabled people were not valued or respected, so many families did their damnedest to keep the label off their kids’ backs. Though Crystal’s grandfather intended to protect her from bigotry, and from being infantilized, he also denied her important self-knowledge, educational resources, and a place in the Autistic community. Without consulting Crystal, her family determined it would be better for her to suffer and hide her neurodiversity than to have a name for her marginalized position in the world. The weight of this decision is one Crystal continues to deal with now, as an adult who was diagnosed in her late twenties.
“Now I know I’m Autistic, but I kinda found out about it too late,” she says. “If I tell people, they don’t want to believe me. I have my life together too much for them to realize how hard it all is. Nobody wants to hear now about how hard it’s always been, always still is, frankly.”
At this point, I have heard hundreds of Autistic people tell versions of Crystal’s story. Some of the details change, but the narrative arc is always the same: A child exhibits early signs of difficulty, but their families and teachers balk when disability is raised. Parents or grandparents who themselves have Autism spectrum traits dismiss the child’s complaints, claiming that everybody suffers from the social stress, sensory sensitivities, stomach issues, or cognitive fuzziness they themselves experience. Everyone in the child’s life views disability not as an explanation of how a person functions (and what help they need in order to function), but a sign of damage. So they push the label away, and tell their child to stop making such a fuss. Believing they are helping their child “rise above” a limitation and be tough, they encourage the child not to be visibly odd, or to ever ask for assistance.
Though a masked Autistic child has no way of explaining why they find life so difficult, they suffer all the same. Peers detect there’s something unnameably “off” about them, and exclude them despite their best attempts at friendliness. When the child makes themselves small and inobtrusive, they’re granted some of the affection they desperately crave and never get enough of. So they do it more and more, quieting the voice inside themselves that says how they’re being treated isn’t fair. They work hard, demand little, and play by society’s rules as closely as possible. They grow into an adult who is even more self-effacing, and even less capable of voicing how they feel. Then, after decades of forcing themselves into a restrictive neurotypical box, they have some kind of breakdown that finally makes all the turmoil bubbling beneath the surface impossible to ignore. It’s only then that they discover they’re Autistic.
In Crystal’s case, the breaking point took the form of a months-long case of Autistic burnout. Autistic burnout is a state of chronic exhaustion where an Autistic person’s skills begin to degrade, and their tolerance to stress is greatly reduced. It hit Crystal like a Mack truck after she completed her senior thesis in college. College had taken her a few years longer than the rest of her friends, though she couldn’t explain exactly why. She was always having to drop classes in order to hold her life together. A full course load just wasn’t possible. When people asked about it, she lied and said she also worked a full-time job.
In her final year of college, Crystal was required to oversee set design for the theater department’s biggest show of the year. Designing dozens of props, sourcing their materials, managing the building of them, and then keeping track of all the items in a big Google spreadsheet was simply too stressful for her to manage, especially while taking her final remaining classes. She pushed through, losing hair and losing weight, but once the project was completed, she collapsed.
“After I graduated, I was in bed at my mom’s house for three months,” she says. “Didn’t apply to jobs. I barely showered, had all these McDonald’s wrappers on the floor of my bedroom, and my family still insisted I was just being lazy.”
Eventually, Crystal became so lethargic that she no longer wanted to watch TV or play with the family dog. That was concerning enough for her mother to suggest she go see a therapist. An Autism assessment came shortly thereafter.
“At first I couldn’t believe it,” Crystal says. “My family still doesn’t believe it. They had every indication, my whole life, but they don’t want to see it.”
At last, Crystal had an explanation for why she couldn’t get as much done as other people, and why basic-seeming tasks like running to the bank or sitting through a two-hour lecture left her too tired to think or speak. Regular life actually did require more willpower out of her; Autistic people frequently experience inertia in starting a task, and challenges in breaking complex activities down into small steps that follow a logical sequence. This can make everything from basic household chores to applying to jobs and filing taxes incredibly challenging, or even impossible without help.
In addition to all the baseline cognitive and sensory challenges that came with Autism for Crystal, she was also having to put a lot of energy into always seeming “normal.” She constantly fought the urge to suck on her fingers, and when people spoke to her, she had to forcibly point her attention at their words and face. Reading a book took her twice as long as the average person. All she had the energy to do at the end of the day was sit in bed and eat french fries. Crystal’s mother and grandfather were unsatisfied by this newfound explanation, though. They said that if she had really been hurting that bad all her life, they would have realized it.
“I wish I could make them understand,” she says, “Autism isn’t what you think.”
Most of us are haunted by the sense there’s something “wrong” or “missing” in our lives—that we’re sacrificing far more of ourselves than other people in order to get by and receiving far less in return.Highlighted by 3,092 Kindle readers
