why does autistic camouflaging have to be a women’s issue instead of a late-diagnosis issue?

Spectrum News recently published this article on camouflaging, which was republished in The Atlantic. As a late-diagnosed male, I’m a bit annoyed that it’s mostly being discussed as a “women’s issue.” The fact that I lived on hard mode that whole time, with all the discipline and suffering entailed, naturally implies something emasculating about me because I just can’t ever fucking win under the current system of gender norms.

Over several weeks of emailing back and forth, Jennifer confides in me some of the tricks she uses to mask her autism — for example, staring at the spot between someone’s eyes instead of into their eyes, which makes her uncomfortable. But when we speak for the first time over video chat one Friday afternoon in January, I cannot pick up on any of these ploys.

She confesses to being anxious. “I didn’t put on my interview face,” she says. But her nervousness, too, is hidden — at least until she tells me that she is tapping her foot off camera and biting down on the chewing gum in her mouth. The only possible ‘tell’ I notice is that she gathers up hanks of her shoulder-length brown hair, pulls them back from her face and then lets them drop — over and over again.

In the course of more than an hour, Jennifer, a 48-year-old writer, describes the intense social and communication difficulties she experiences almost daily. She can express herself easily in writing, she says, but becomes disoriented during face-to-face communication. “The immediacy of the interaction messes with my processing,” she says.

“Am I making any sense at all?” she suddenly bursts out. She is, but often fears she is not.

I make eye contact, but I keep it brief unless I’m really close with the person. One example from daily life would be the way that I’m really focused on efficiency during the grocery check-out process. Lining everything up on the conveyor belt. Bagging everything myself. Fiddling with the card reader. I’m able to keep busy the entire time in a way that I barely need to look at the cashier during the process. That’s the polite way to behave in line at the grocery store, but that’s not the only thing going on…

Soldiering through anxiety without letting it show is partly an autism thing and partly what you have to do anyway as a man. None of this stuff comes down to a single factor.

It’s disconcerting not knowing what will and won’t make sense to other people. You know that you’re weird, but you’re powerless to prevent some of it because you don’t know which things are the reason. You could say The Wrong Thing at any time.

To compensate, Jennifer says she practices how to act. Before attending a birthday party with her son, for example, she prepares herself to be “on,” correcting her posture and habitual fidgeting. She demonstrates for me how she sits up straight and becomes still. Her face takes on a pleasant and engaged expression, one she might adopt during conversation with another parent. To keep a dialogue going, she might drop in a few well-rehearsed catchphrases, such as “good grief” or “go big or go home.” “I feel if I do the nods, they won’t feel I’m uninterested,” she says.

On the phone, I can pull off eternally patient, friendly tech support engineer. It’s even satisfying to send positive vibes into the universe. But I’m curled up in fetal position in a corner afterwards. Or I can’t stop pacing.

Over the past few years, scientists have discovered that, like Jennifer, many women on the spectrum ‘camouflage’ the signs of their autism. This masking may explain at least in part why three to four times as many boys as girls are diagnosed with the condition. It might also account for why girls diagnosed young tend to show severe traits, and highly intelligent girls are often diagnosed late. (Men on the spectrum also camouflage, researchers have found, but not as commonly as women.)

Nearly everyone makes small adjustments to fit in better or conform to social norms, but camouflaging calls for constant and elaborate effort. It can help women with autism maintain their relationships and careers, but those gains often come at a heavy cost, including physical exhaustion and extreme anxiety.

“Camouflaging is often about a desperate and sometimes subconscious survival battle,” says Kajsa Igelström, assistant professor of neuroscience at Linköping University in Sweden. “And this is an important point, I think — that camouflaging often develops as a natural adaptation strategy to navigate reality,” she says. “For many women, it’s not until they get properly diagnosed, recognized and accepted that they can fully map out who they are.”

Did I adopt it as a strategy because I was socialized by my autistic mom? Was it because of the psychology/social work influence from my dad? Is it really related to intelligence? I could see that, because a lot of my model of the world comes from reading about it academically. I gravitated towards a lot of writing about structural issues and psychoanalysis, i.e., attempted to logically infer the unspoken social things.

You’re generally diagnosed with autism because of problems. It was instilled in me that Really Bad Things would happen if I didn’t do well in school, so fucking up too bad wasn’t really an option. I wonder if it’s different for people who grew up with more of a sense of safety. I also wonder how much comes down to the fact that my parents more sincerely believed in the rules they were enforcing. You do NOT make a scene in public. There was no hint that it was really okay to misbehave because we’re special, which is the impression you get watching other people with their children in public.

Even so, not all women who camouflage say they would have wanted to know about their autism earlier — and researchers acknowledge that the issue is fraught with complexities. Receiving a formal diagnosis often helps women understand themselves better and tap greater support, but some women say it comes with its own burdens, such as a stigmatizing label and lower expectations for achievement.

Yes! We shudder to think what would’ve happened if we were disabled with an autism diagnosis in our childhoods. In utopia, of course it’s better to know yourself and live it openly. In reality, the adults will fuck you up.

Stereotype threat is real. I’m convinced that some of the reason I did well in school was also related to the fact that expectations aren’t actually lower for black people in Department of Defense Dependents Schools. Apparently sociologists looked into it.

Because so many more boys are diagnosed with autism than girls are, clinicians don’t always think of autism when they see girls who are quiet or appear to be struggling socially. William Mandy, a clinical psychologist in London, says he and his colleagues routinely used to see girls who had been shuffled from one agency or doctor to another, often misdiagnosed with other conditions. “Initially, we had no clue they needed help or support with autism,” he says.

I was quiet. I was exposed to old school German “children should be seen and not heard” old people. Some kids also learn to keep quiet about problems for fear of their parents’ reactions, or they’re held to perfectionist standards at home. The home environment has a lot to do with whether you learn to keep shit to yourself. And for boys, showing weakness of any kind, ever is a bad idea. The same mindset prevails in grad school.

Last year, a team of researchers in the United States extended that work. They visited several schoolyards during recess and observed interactions among 48 boys and 48 girls, aged 7 or 8 on average, half of each group diagnosed with autism. They discovered that girls with autism tend to stay close to the other girls, weaving in and out of their activities. By contrast, boys with autism tend to play by themselves, off to the side. Clinicians and teachers look for social isolation, among other things, to spot children on the spectrum. But this study revealed that by using that criterion alone, they would miss many girls with autism.

In second grade, I was taking Taekwondo lessons. I was starting to skateboard and learning to ride my bike without training wheels. I was friends with boys up and down the street. It was fun to do things like jump off swings or ride down hills on a 3-wheeler and do skid-stops.

At one point during the year, I spent recess playing with a group of girls. We played tag and four square and especially doing flips on gymnastics bars. I guess my playing was very physical compared to a lot of kids? I was the only boy with the group of girls, so I guess it was weird, and my sister once commented on it when I described my day at school.

I do have social chameleon qualities. Recently at work, I’ve been flipping out at managers about their fiduciary duty to prioritize money over another team’s comfort. I don’t believe in capitalism, but that’s the way to fight an office politics battle over who’s responsible for a certain task that stresses me out constantly. The contradictions of life.

These standard tests may miss many girls with autism because they were designed to detect the condition in boys, says lead researcher Allison Ratto, assistant professor at the Center for Autism Spectrum Disorders at Children’s National Health System in Washington, D.C. For instance, the tests screen for restricted interests, but clinicians may not recognize the restricted interests girls with autism have. Boys with autism tend to obsess about things such as taxis, maps or U.S. presidents, but girls on the spectrum are often drawn to animals, dolls or celebrities — interests that closely resemble those of their typical peers and so fly under the radar. “We may need to rethink our measures,” Ratto says, “and perhaps use them in combination with other measures.”

Skateboarding, martial arts, Legend of Zelda. It’s not weird to have hobbies.

The adults in the survey described an imaginative store of tools they call upon in different situations to avoid pain and gain acceptance. If, for example, someone has trouble starting a conversation, she might practice smiling first, Lai says, or prepare jokes as an ice-breaker. Many women develop a repertoire of personas for different audiences. Jennifer says she studies other people’s behavior and learns gestures or phrases that, to her, seem to project confidence; she often practices in front of a mirror.

I do much better in situations where there’s a script or at least a pretty specific idea of what we’re trying to accomplish, especially if I’m supposed to have a teacher persona. Within the boundaries of “customer call for work,” I really can sometimes be comfortable in situations that are stressing my coworkers out. Recently, a client had a really minor best practices sort of issue with the X-Frame-Options headers (bear with me). Those are a type of HTTP response header. There was confusion because the header was sometimes there and sometimes not, depending on the Referer [sic] header in the request. The problem: get them to understand the conditions for reproducing the issue, when they’re developers who struggle with constructing and sending an HTTP request. That’s a straightforward, tractable problem. I got this.

Right as I got on the call (still waiting for customer), my supervisor IMed me about whether I was going to need his help (he had other things to do), because the account manager was “sweating bullets.” The reason is that the client had an arrangement with THEIR client that this vuln needed to be fixed ASAP, but the developers couldn’t reproduce it. The phrase “false positive” was invoked. OMG escalation!

It was like…nah, I’m good. We had a productive meeting and some technical difficulties I had to follow up on the next day, most likely because they were using a regex like /www\.theirstuff\.com/ where they should’ve been using /www\.theirstuff\.com$/. The point being that you could trick their system with www.theirstuff.com.ourstuff.com. See how the job is perfect for autism with a degree of social skills?

Many of the participants had self-diagnosed, but 155 women have an official autism diagnosis. Nearly 80 percent of the participants had tried to implement strategies to make stimming less detectable, Igelström says. The most common method is redirecting their energy into less visible muscle movements, such as sucking and clenching their teeth or tensing and relaxing their thigh muscles. The majority also try to channel their need to stim into more socially acceptable movements, such as tapping a pen, doodling or playing with objects under the table. Many try to confine their stimming to times when they are alone or in a safe place, such as with family. Igelström found that a few individuals try to prevent stimming altogether by way of sheer will or by restraining themselves — by sitting on their hands, for example.

Before I had the concept of stimming, I felt like there was something wrong with me that I struggled so much to sit still for more than ~15 minutes during meditation.

I remember that I used to fold my fingers over each other compulsively. I started picking at my nails, which turned into peeling the skin off my fingertips starting at the nail. I copied nailbiting from the girl I liked in 5th grade (lol). I used to play with my earlobe. Tapping out rhythms. Learning to pen flip from the debate people in 9th grade was a godsend.

#6. Back and forth around the thumb indefinitely. You can put a satisfying amount of force into it.

All of these strategies call for considerable effort. Exhaustion was a near-universal response in the 2017 British survey: The adults interviewed described feeling utterly drained — mentally, physically and emotionally. One woman, Mandy says, explained that after camouflaging for any length of time, she needs to curl up in the fetal position to recover.

This.

Igelström says some of the women in her study told her that suppressing repetitive movements feels ‘unhealthy’ because the stimming helps them to regulate their emotions, sensory input or ability to focus. Camouflaging feels unhealthy for Lawrence, too. She has to spend so much effort to fit in, she says, that she has little physical energy for tasks such as housework, little mental energy for processing her thoughts and interactions, and poor control over her emotions. The combination tips her into a volatile state in which “I am more likely to experience a meltdown or shutdown,” she says.

Work is a struggle because tasks come faster than I can recover from them. Filling my head with so much information at the last minute to be ready for a call and then not needing it ever again. Agitation building up faster than I can dissipate it. Hence ongoing work battle to get some of the calls shifted to their rightful owners so I can do more text-focused casework. Investigating instead of performing. The social graces take less mental effort to keep up through writing. I can have background music.

Others might have benefited from knowing themselves better. Swearman completed a master’s degree to be a physician assistant, but ultimately stopped because of issues related to her autism. “I was actually very good at what I did,” she says. But “it was too much social pressure, too much sensory stimulation, a lot of miscommunication and misinterpretation between myself and supervisors, due to thinking differences.” It was only after she stopped working that her counselor suggested she might have autism. She read up on it and discovered, “Oh, my gosh, that’s me!” she recalls. It was a major turning point: Everything started to make sense.

That’s what would’ve happened to me if I’d gone through with my idea of getting an MSW.

It’s only after a diagnosis that a woman may ask, “Which parts of myself are an act and which parts of me have been hidden? What do I have that’s valuable inside myself that can’t be expressed because I’m constantly and automatically camouflaging my autistic traits?” Igelström says. “None of those questions can be processed without first getting diagnosed, or at least self-identify, and then replaying the past with this new insight. And for many women, this happens late in life after years of camouflaging in a very uncontrolled, destructive and subconscious way, with many mental-health problems as a consequence.”

I can probably seem dead because I’ve been punished so much for being too intense about my interests. If I let it all out, it’s too much. Boring. Monopolizes the conversation. Or my views are way outside the bounds of social acceptability.

Jennifer concedes that knowing about her autism earlier would have helped her, and yet she is “torn” about whether it would have been better. Because she didn’t have a diagnosis, she says, she also had no excuses. “I had to suck it up and deal. It was a really difficult struggle, and I made loads of mistakes — still do — but there was simply no choice,” she says. “If I had been labeled as autistic, maybe I wouldn’t have tried so hard and achieved all the things I’ve achieved.”

This results in a certain “resilience.”

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