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by
Devon Price
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November 5 - November 8, 2024
Women don’t have “milder” Autism because of their biology; people who are marginalized have their Autism ignored because of their peripheral status in society.
Refusing to perform neurotypicality is a revolutionary act of disability justice. It’s also a radical act of self-love.
When you stop judging yourself according to the neurotypical gaze, everything from your relationship norms and daily habits, to the way you dress yourself and design your home is free to change.
Label avoidance (taking steps to evade diagnosis) is a very common consequence of disability and mental health stigma.1 Publicly identifying as disabled does mean being viewed as less competent—and less human—by many people.
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.
Autistic people frequently experience inertia in starting a task,
In fact, some research suggests that when people understand disabilities such as depression and ADHD as being purely biological, they actually show more stigma toward people with those conditions, not less.
neurotypicality is more of an oppressive cultural standard than it actually is a privileged identity a person has. Essentially no one lives up to neurotypical standards all of the time, and the rigidity of those standards harms everyone.42 Much as heteronormativity harms straight and queer folks alike, neurotypicality hurts people no matter their mental health status.
Just because their challenges couldn’t be easily named didn’t mean they didn’t exist.
Relatives of diagnosed Autistic people, for example, frequently are found to exhibit subclinical traits.47 Of course, what’s considered to be “subclinical” is often more a function of a person’s ability to hold down a job and conform to societal rules than it is a reflection of how much they are suffering.
An Autistic shutdown happens when an Autistic person gets so overstimulated and stressed, they can no longer process their surroundings.51 It’s the quieter, more interior counterpart to an Autistic meltdown, which tends to involve more crying, self-harm, or outward aggression. Shutdowns are essentially a way of dissociating from one’s surroundings. It can look like falling asleep very suddenly, becoming unresponsive, or just kind of zoning out
is a journey of self-acceptance, community building, and growing self-advocacy,
Disability is not a bad word, because being disabled is not a shameful thing.
The world actively dis-ables people by failing to provide accommodations they need. Naming the reality of disability shows respect for disabled people and awareness of how we are oppressed. “Differently abled” attempts to erase that behind a cutesy euphemism, and many of us find the term offensive.
When people use person-first language, they often say it’s because they don’t want disabled people to be defined by their disability. However, phrases like “person with Autism” distance a person’s disabled status from their humanity in a way that can be quite harmful. Autism is not a thing that is added on to a person—it’s integral to their life and cannot be removed from who they are.
Functioning labels oversimplify the Autistic experience, and they do serve to imply that we should be defined by how productive and independent we are. That’s a big problem. At the same time, function labels can occasionally be used to highlight the fact that those of us who can talk, dress ourselves, or hide our meltdowns have social privileges other Autistic people do not have. I don’t function “highly” in every single realm of my life, but I am able to get by more easily than many other Autistics. My acceptance in society is conditional on my behaving respectably and being productive.
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Sadly, many “gender critical” parents and mental health professionals don’t see it that way. Transphobic people often take the strong association between gender variance and Autism as a sign that we aren’t “really” trans, we’re “just” Autistic and confused.19 They presume Autistic people are un-self-aware and easily manipulated, and therefore shouldn’t be allowed to make decisions about our identities or what we do with our bodies.
It’s an all-too-common experience for disabled people, being told that your skills in one area are proof that you’re “not trying hard enough” in another.
Psychiatrists in the 1940s believed Autism was a form of childhood schizophrenia,71 but they certainly don’t see it that way now.
Autistic burnout presents very much like a major depressive episode.
An article by psychiatrists Meng-Chaun Lai and Simon Baron-Cohen, published in the medical journal The Lancet, has proposed that an entire generation of Autistic people were misdiagnosed as having personality disorders.80 Unsurprisingly, they propose that most of the misdiagnosed were marginalized women. Usually, I find a lot of problems with Baron-Cohen’s work; he has long been an advocate for the view that Autism is best understood as an “extremely male brain.”81 Yet in this research, he seems to acknowledge that the reason many women are not diagnosed as Autistic is because they’re labeled
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Of course, the very idea that certain Autistic people function more highly than others, or that functioning status is a binary quality you can catch at a glance, is problematic in its own right. That kind of thinking leads to many of us having our disabilities erased, and the private suffering that makes public “functioning” possible is ignored. It also perpetuates the idea that the only disabled lives worth living are those that can still manage to be productive or impressive in some conventional way.
When neurotypical people equate “functioning” with being less disabled, they fail to recognize the immense, hidden labor that goes into appearing normal.
Furthermore, some people don’t “function” independently in any area of life at all, and that shouldn’t detract from their value and the respect they receive, either.
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
Regular life is more cognitively and emotionally demanding for neurodiverse people than it is for neurotypicals, but we have to hide that fact from other people on a daily basis. To prop up our façade of being “high functioning,” we build a messy, unstable scaffolding of flawed coping mechanisms. It’s no wonder we report anxiety7 and depression8 at elevated rates.
Psychiatrists and psychologists have always defined Autism by how the disability impacts neurotypical people. A more “severely” Autistic person is not necessarily a person who experiences more interior suffering, but rather someone who suffers in a more disruptive, annoying, or disturbing way. The Autistic children who present the biggest hassle are the ones most likely to be referred to services, whereas those who can conceal their struggles are granted tentative approval—but risk never being understood or empathized with.
Sadly, the comfort and convenience of the neurotypical teachers and parents are prioritized, so ABA remains the one and only “evidence-based” treatment for Autism that most insurance plans will cover. Becoming “well behaved” is more important than being psychologically well.
When we lack a clear understanding of our disability, and no one around us recognizes us as disabled, we make do the best we can.
Since a growing body of research suggests cognitive behavioral therapy (CBT) approaches don’t work as well for Autistics as they do for neurotypicals,13 CBT-based addiction treatment might not be a good fit—at least not without modifications.
This may be a bit of a contrived example from a laboratory setting, but it points to a tendency many of us have to view ourselves as powerless, and fundamentally detached from our bodies and the broader world. We rely on external signs of success (winning a game, getting praised by another person) to guide us, rather than trusting our perceptions and power of discernment.
For those of us with alexithymia, we may know in a vague way that we’re distressed, but might not be able to name a specific feeling like jealousy or resentment. We also struggle to figure out why we’re feeling emotions. This trait is yet another reason that neurotypicals stereotype us as unfeeling and detached.
However, many Autistic people (myself included) still need time alone to reflect on how we’re feeling, because the social information given off by other people is so distracting. Today I’m sometimes able to notice in the heat of the moment that I’m uncomfortable with the topic of conversation, for instance, or the way someone is pushing me to do something I don’t wish to do, and I can tell them to stop; other days I simply feel panicky and frantic, and can’t figure out what’s wrong until hours or days later.
fully as cults but still exert a strong pull on their members, such as many evangelical faith communities.
Ultimately, all masking is about setting our feelings aside so we can focus on pleasing others or conforming to social norms. This is always going to be a self-destructive values system to live by, regardless of the coping mechanisms we use to prop it up.
Let’s start at the beginning: the first step of the unmasking process is realizing you’re Autistic. It might not feel like it’s an active step toward self-acceptance or authenticity, but coming to understand yourself as disabled is a pretty dramatic reframing of your life.
Naming their position in society as a disabled person helped them to externalize that which had long been internalized. It proved that none of their suffering had been their fault.
As disability advocate Rabbi Ruti Regan writes on the blog Real Social Skills, “noncompliance is a social skill.”7 It’s only “bad” if you’re looking at it from the outside, from the perspective of someone who seeks to control or restrict.
A noncompliant child may be stressful to raise, but if you want your kid to become a strong, healthy person with the power to self-advocate, it’s crucial they know how to stand up for themselves and say “no.”
When a person from a highly stigmatized group absorbs and believes some of the negative stereotypes applied to their group, they’re suffering from what researchers call self-stigma. Self-stigma is heavy; people high in it experience reduced self-esteem and see themselves as less capable than other people, and they’re often afraid to seek help.
Though the Diagnostic and Statistical Manual of Mental Disorders states that Autism is defined by having a “restricted” range of interests, some Autistic folks cycle through new special interests every couple of months and become polymaths in a variety of subjects. Others are steadfastly dedicated to one topic their entire lives.
an adult fills their evenings after work learning to code or creating jewelry that they sell on Etsy, they’re seen as enterprising. But if someone instead devotes their free time to something that gives them pleasure but doesn’t financially benefit anyone, it’s seen as frivolous or embarrassing, even selfish. In this instance, it’s clear that the punishing rules imposed on Autistic children reflect a much broader societal issue: pleasure and nonproductive, playful time are not valued, and when someone is passionate about the “wrong” things, that passion is discouraged because it presents a
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But when we drill down into what makes us feel happy, stimulated, and fully alive, we can identify who we really are, and what our lives ought to look like.
Eventually, she decided to stop focusing on what others desired from her, and let her life be guided by her actual values.
Being Autistic in a neurotypical world is often traumatizing,21 and being forced to mask is essentially an experience of society-driven abuse. Though you may sometimes wish that life had been different or that you hadn’t been made to suffer, your disability isn’t to blame for what happened, and neither are you. It was a far-reaching, centuries-old system of injustice that left you in such a difficult spot.
After the initial shock of realizing you have a hidden disability, there are often waves of acceptance and relief.
Self-stigma is a liar; you’re not cringey, “too much,” a baby, or a cold-blooded creep. You’re a marginalized person with many beautiful and unique qualities. Your needs are value-neutral, and your emotions are helpful signals to respond to that don’t merit any shame. Autism has always been a powerful driving force in your life, often for the better, even when you did not know that it was there.
“When designing an interior space,” Marta writes,1 “design for how you actually live, not how you aspire to live . . . your space must be designed to accommodate the reality of your life, without shame or judgement.”
The sleep-wake cycles of Autistic adults also differ, on average, from the circadian rhythms of neurotypicals,13 and many of us experience sleep disorders.14 One reason that we may need more sleep than others is just how tiring it is for us to be in the world. Sensory overload, social overwhelm, and the pressures of masking all significantly drain our batteries. This means many of us are not well suited to a nine-to-five job, and keep other hours instead.
Throughout much of human history, time was a relatively intuitive concept; the seasons and daylight cycles influenced people’s activities and their expectations. This all changed with the invention of electricity, and industrialized work that took place in lightbulb-lit warehouses and offices. As digital work tools have expanded, the possibility of perpetual work has taken over our lives. There are no periods of dormancy, no dark nights, and no snow days. There is no escaping work (and productivity tools and apps), even when we are at home.
