My Understanding of Autism Has Radically Changed
Or, why I now find it hard to talk about autism with most people.
If you aren’t autistic—or close with someone who is—the chances are high that you don’t know much about autism.
Many of us conceive of autism too narrowly
For example, when you conjure up an autistic person in your mind, you probably imagine a boy. If so, you’re not alone. Until fairly recently, many medical professionals thought that only males could be autistic.
That’s not true. While boys do get diagnosed at higher rates (the gender ratio is somewhere around 4:1 or 3:1), this increasingly seems to be because autism presents differently for boys than for girls.
Case in point: in a 2022 study, researchers developed a machine learning model that consistently and accurately used fMRI data to distinguish between the brains of male and female autistic people. But, fascinatingly, when the researchers gave the model—which had been trained on autistic brains—fMRIs of the brains of allistic, or non-autistic, people, it could no longer distinguish males from females.
This suggested to the researchers “that there are gender differences in the functional brain organisation in ASD that differ from normative gender differences. Brain features associated with motor, language and visuospatial attentional systems reliably distinguished between females and males with ASD.”
In other words: there is evidence that autism is different across genders at the brain level. This—along with “masking,” which I get into below—would help explain why the “gold-standard” diagnostic tests for autism are significantly better at identifying autistic boys than girls.
You probably also associate autism with intellectual impairment—which can certainly exist alongside autism but is nowhere near a given. Current estimates are that only around half of autistic people are intellectually impaired—but even that figure will likely drop as diagnosticians get better at identifying autism in people without intellectual impairment.
Relatedly, you likely assume that autistic people have significant, visible social problems. So does the DSM-V, the standard guide that mental health professionals in the U.S. use to diagnose “disorders.” To get an autism diagnosis, the DSM-V requires that an individual have trouble with social reciprocity and atypical social communication.
But increasingly, people who do not outwardly present with these social difficulties are identifying as autistic. Some of them are self-diagnosed, a practice that is generally embraced within autistic circles, while many others have received formal medical diagnoses.
Autistic “masking” is real—and common
Critical to whether people like this get diagnosed as autistic seems to be whether their professional evaluator takes seriously their internal experience of autism—not just how they present to the external, overwhelmingly neurotypical world.
These “under-the-radar” autistic folks—disproportionately, but not exclusively, adult women and AFAB people—often recount lifetimes of struggling on the inside, working hard to blend in with neurotypical folks, and “passing as normal.” This process is often referred to as masking or camouflaging, and it can take a major toll on autistic people’s mental health.
I think I might be one of them. I haven’t sought out an official autism diagnosis, and I’m not sure I’ll meet the criteria if/when I do. But when I read the stories of so-called “high-masking” autistic women, especially those with a dual ADHD diagnosis… man. They speak to me. I savor the books and blogs and Reddit posts of high-masking autistic women like fancy chocolate. I don’t connect with everything I read, but very often, I find these stories profoundly familiar.
Because I’ve been on the internet long enough to know that someone will comment here that everyone masks, let me get ahead of that for a second. Yes, everyone does mask, to some extent. We’re unique humans trying to find our place in a society full of people who are, to greater or lesser extents, different from us.
The distinction between neurotypical and autistic masking seems to be primarily one of degree. That is, autistic people have to mask far more often than neurotypical people—unless they’re lucky enough to find themselves in the company of fellow autistic folks.
However, there are also certain categories of behaviors or traits that autistic people may try to mask more often than non-autistic people. These include things like “stims” (self-stimulating or self-regulating behaviors), speaking enthusiastically or for prolonged periods about their special interests, and communicating bluntly. Autistic people who are masking might put a lot of effort into making and maintaining eye contact, using a more varied tone of voice, and adopting “appropriate” body language—even if skipping these things would make it far easier for them to listen to others or articulate their thoughts in a coherent, precise way.
Autism is not what most of us think it is
This understanding of autism is quite new to me. One of my older relatives is autistic, and I grew up thinking of him as representing all of autism. He communicates quite differently from the rest of us in the family, frequently pacing back and forth while repeating short phrases under his breath. When we would visit him — he primarily lived with his parents until they passed away — his behavior often felt unpredictable, even scary.
The idea that “autism” could include both my relative and a neurotypical-presenting person never once crossed my mind. (I have since learned that this relative was also diagnosed with schizophrenia, which further complicates my early understanding of autism.)
It wasn’t until I began exploring the possibility that one of my children was autistic that I learned how broad-ranging the autism spectrum really is. My experience is pretty common; once people have a personal reason to deep-dive into autism, they quickly realize how little they know.
So—there is a disjunction between what neurotypical people think autism is and what it actually is. Despite autism being a spectrum, most people—including many within the medical community—hold a very narrow conception of it.
This deprives so many people—again, disproportionately women—of the opportunity to learn more about their minds, recognize and advocate for their needs, seek accommodations within institutions built to meet the needs of neurotypical people, and, so crucially, connect with other people with a similar neurotype.
(Sidebar: I don’t mean a spectrum of “mild” to “severe.” That’s a gradient. Autism is a true spectrum, like the color spectrum—one with all sorts of people on it, each of whom has a distinct combination of neurological traits and behaviors. It includes people with and without intellectual disability; people with more “obvious” autistic behaviors and those who are better able to blend into neurotypical society; people of all genders and sexual identities. There’s so, so much written on this by autistic authors and researchers—I’m just scratching the surface here!)
When researchers center the experiences of autistic people—or, even better, when autistic people conduct the research themselves—we learn that the internal experience of autism can be quite different from its external presentation. A classic case here is that of the non-verbal autistic person whose mind is racing with rich, nuanced thoughts—but it doesn’t have to be so dramatic as that.
When asked, autistic people routinely dispel myths that they all lack empathy or the ability to read other people’s emotions. Sure, autistic people can struggle to understand the minds of non-autistic folks. But—crucially—the reverse is also true: non-autistic people have a hard time understanding the inner workings of autistic people’s minds.
You can see the problem here. If non-autistics are the ones defining what makes someone autistic—if they are the ones diagnosing the autistic mind—they are very likely going to get some things wrong.
A phenomenology of autism
So much of this narrow conception of autism seems to stem from a fundamental miscategorization of autism as a pathology, rather than a value-neutral neurological difference.
When we listen to autistic people, we repeatedly hear that the problem isn’t really having an autistic neurotype. The problem is that society has othered an entire neurotype. It’s the scientific community’s pathologizing of a brain that is wired differently from most other people’s brains.
The more I learn from autistic advocates, the more committed I am to rejecting this pathology paradigm and embracing a neurodiversity paradigm.
We need a phenomenology of autism—a conception of autism built from the subjective, lived experiences of autistic people, rather than the best guesses of neurotypical onlookers.
Time and again, autistic people describe themselves as being different, not disordered. That’s not to say that autism isn’t disabling. Having mental differences can absolutely be disabling in a world built for other people’s minds. So long as society is built to meet the needs of neurotypical people—and so long as we’re all steeped in deeply ableist beliefs that stigmatize mental differences—we’ll need to provide extra support and appropriate accommodations for neurodivergent people. But the end goal is to fundamentally change the way society is structured, so that all neurotypes are equally abled.
Within the neurodiversity paradigm, being autistic doesn’t require you to prove that you have a problem. Your brain just works differently. You have certain traits, tendencies, and behaviors that are, to some sufficient extent, shared with other people who identify as autistic.
The polysemy problem
This is such a different view of autism than the one most people hold. It means that, when I say “autism,” I am talking about something different than what most people think.
This is a problem of polysemy—when one word holds multiple meanings. There isn’t an agreed upon, underlying construct. So we talk past each other, misunderstand one another.
The polysemy problem also leads a lot of autistic folks to stay closeted—which, while a totally understandable choice, contributes to most people’s narrow conception of autism. It’s really hard to publicly claim a label that you deem neutral, even positive, but that most people will immediately misunderstand. It’s an especially cognitively dissonant experience when, for so many autistic people, embracing their autistic identity immediately brings so much connection and understanding within the autistic community.
The bright side is that there seems to be a lot of movement toward the inclusion and adoption of autistic people’s perspectives. Increasingly, autistic folks are the ones driving the research, changing the definitions, even conducting diagnostic evaluations and identifying fellow autistics that might have otherwise fallen through the cracks. Here’s hoping—deeply hoping—that trend accelerates, and quickly.
