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October 1, 2021 - July 8, 2023
In the early days of autism research—the foundational days, really—teams of all-male scientists, like Dr. Hans Asperger, observed all-male patients, mostly children. Eventually, those clinicians’ notes became the basis of the autism profile. Logically, more boys fit criteria that came from studying and describing boys.
For those of us who spend so much of our lives feeling just outside that magical place of easy friendships and happy Happy Hours, we girls are outside the outsiders, still knocking on the door.
It’s a strange thing to read a profile, a list of traits and characteristics, and most powerfully, explanations of how they will play out in real life—only to find that you’re actually looking in a rearview mirror and seeing the infinite moments and memories on the road behind. As if, all along the way, from childhood through this very moment, you’ve been navigating life at the whim of an unseen Autism Conductor.
People on the spectrum can be particularly literal in our interpretation of language (which makes for all sorts of bumbling).
Many of us also communicate through metaphor—through popular culture references or even lyrics to a song. It helps us assign an emotional, experiential vocabulary, an allegorical dictionary to access within our own internal dialogues when trying to process someone else’s behavior and in trying to explicate ourselves to the neurotypical world.
Instead, I’ll repeat the simple fact that “autistic people” are not a monolith. We are a diverse group with diverse daily experiences … just like everyone else in the world.
The point to be made here is an essential one: experience precedes identification. Invalidated realities are not the fault of those who live them. They are the frontiers for those who don’t. Or at least, they should be.
Communication, in the best of circumstances, isn’t easy. It takes effort, purpose, and not a small amount of creativity, especially if whatever you’re trying to explain isn’t an experience many people share. It takes just as much to tease apart a reality that is a given to most, but for you is just a hinted-at, unclear set of expectations. Being an autism translator is a full-time job. Largely, that’s because without even being aware of it, we are all operating based on assumptions. Everyone. Constantly. How you interpret my phrasing. How I read your body language. No person is a tabula rasa—a
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When wielded with proper care, a label can be an incredibly helpful descriptor appropriate to a particular situation—an element of identity, not an entire identity.
At the most basic level, a label is a communication tool that helps us effectively ask for and get what we need.
What’s it like to be us? Too much. We feel too much. React too much. Say too much. Need too much. So says the world. I say: the world is wrong. There is an exquisite trade-off for a life so differently led: complex imagination, limitless curiosity, profound compassion, and restless independent thought. They are the core of everything I am. They will be responsible for whatever legacy I leave behind.
If they were nonverbal or showed lower cognitive abilities, female and autism might be spoken together, otherwise, no. Girls had to be more obviously affected in more ways to be noticed, which is likely why experts believed that, on average, girls with autism had more severe symptoms and more significant intellectual disabilities. Those days are not long gone.
Bright, verbose, articulate, sensitive, intense girls and women—some introverted, some stage divas, some trendsetters, some followers, and some leaders—can be just as “autistic” as the guys and still not be seen by “experts.” Or by ourselves.
At age sixty, fifty, forty, thirty, so many have suffered for so long without the one, accurate identifier that could change everything. And we are asking, now … is it finally our turn to make sense?
More sensitive, accurate, and gender-appropriate diagnostic tools are necessary to overcome camouflaging and clinical bias and establish a larger, more diverse and representative population eligible for study. By the same token, a larger, more diverse, and representative population has to be identified in order to sensitize and improve gender-appropriate diagnostic tools.
Right now, there are thousands of women still camouflaged, even from themselves.
• Unlike our male counterparts, it’s the level of intensity and almost-professorial knowledge about our special interest, rather than the interests themselves, that set us apart from neurotypical peers.
Frequent passions (a.k.a. special interests) include genealogy and timelines, Disney, mythologies, folklore, cosplay, history and historical fiction, time travel, literature and literary figures, language, animals, anime, fashion, music, and theater.
• Special interests provide two primary functions: they give our brains a pleasurable topic on which to ruminate and perseverate, and they act as a social buffer, transportation to a distant time, place, species, or social scenario where interpers...
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• We tend not to act out as often as we act in. We focus the majority of our anger and frustration at ourselves. If we get in trouble, it’s much more likely for sounding like a “know-it-all” or for trouble regulating our moods.
Girls on the spectrum are often word- or linguistically based thinkers with a keen interest in word and phrase origins, foreign language, and regional accents—which we have an uncanny ability to imitate.
We frequently have a strong connection to poetry and song lyrics and can detect incredibly subtle patterns within both.
Spectrum girls are more likely to gather and memorize as much information as we can on social rules, social psychology, and sexual expectations. It’s our way of compensating for what others pick up naturally.
It’s not always making friends that’s difficult. Often, it’s our tendency to be unaware of strain in the relationship and/or the sustained effort attention required to maintain relationships that are our downfall.
Our friendships can be broken down into eras where close ties end abruptly, though the cause of the “breakups” may elude us as we break hearts and provoke tempers without even realizing it.
• Throughout our lives, we often gravitate toward people who are older and/or younger than us, rather than direct peers. The relationships we prefer have clear roles and rules and less need to spontaneously negotiate dialogue, compromise, and group dynamics.
Girls on the spectrum may feel more intensely connected to fictional or historical characters than to real people.
Biographies (books, documentaries, films) are a favorite way to study people and from their strategies, choices, accomplishments, and relationships develop a larger personal emotional vocabulary and learn “how to be.”
Hyperlexia—very early, very fast, self-taught, highly skilled reading—is comm...
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We tend to be socially naive, blind to others’ motives, have trouble distinguishing acquaintances from close friends, or define what constitutes an actual friendship (we haven’t had enough experience).
Challenges with impulsivity, problem-solving, emotional balance, and compulsions make us vulnerable to substance use/abuse (alcohol/prescription and nonprescription drugs) as well as process addictions (eating disorders, self-harm, skin picking, acting out sexually, shopping, gambling), despite our awareness of the negative impact on our lives.
Females are more likely than males to try to manage anxiety, depression, trauma, and low self-esteem through self-harming behaviors, such as cutting and skin picking.
Everything we do, we do intensely and often spend a great deal of time analyzing our own thinking
processes (metacognition) as well as larger,...
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Certainly, there are infinite types of people who also happen to be autistic. Why we do what we do always makes sense, if not to those who observe from a distance.
If neurology, like race or gender, is, indeed, a spectrum of experience, neither good nor bad (as many believe is the case), then our reactions to the world we inhabit are as valid and logical as everyone else’s. They seem less so only because we are, for most practical purposes, also understood as a diminished version of human.
Most of us, spectrum girls and women, don’t even know we are part of a group, let alone that there is help navigating the waters. Desperate for inclusion, we are a perpetual dash of “just a bit too much” and often don’t discover the people, skills, or supports that could help us (and the world) to enjoy our beautiful version of normal.
If others’ reactions are our main source of determining who and how we are, and if, as Dr. Salters-Pedneault asserts, those reactions have been unpredictable and/or scary, we are literally without a framework within which to develop a strong sense of identity.
It’s the “exactly” part that gets you. What I hadn’t learned yet is that playing well with others isn’t about imitation. Imitation is rote and void of nuance or context. No, social success is about improvisation. Spontaneity within certain, unspoken boundaries. Break the rules in any other direction, and you will be called out. Fast. Upset the apple cart of social homeostasis, and nobody cares what you have to say. They’ll be too busy paying attention to the way you’ve said it to listen.
Learning how to keep up appearances was something I’d learned by trial and error, myself.
Context. That was the problem. It still is. I pretty much didn’t (and often still don’t) notice context. Had anyone known I was autistic, perhaps they would have recognized my “difficulties adjusting behavior to suit various social contexts.” It’s actually one of the markers clinicians look for in making diagnoses.
True. I wasn’t all bad. And there were lots of inconsistencies: I was smart but oblivious, wracked with compassion for underdogs but matter-of-fact and indifferent besides, desperate to be liked yet irritating as hell. Lots of disconnected contradictions that didn’t add up to anything—didn’t align into any recognizable profile or constellation … other than this: I was too smart for my own good, smart-alecky, hypersensitive, overdramatic, and difficult to love.
When we feel either understimulated or overstimulated, we physically cannot reason, listen, or think about anything else. We can’t just ignore it. We can’t learn. We can’t be spontaneous or fun. We can’t rationalize well. And we can’t hear others’ needs, let alone be certain we understand our own. It’s like trying to see your own reflection in a pot of boiling water. Nothing is clear.
There was no “autism” frame of reference during my childhood or for most of life. There was no respite for my parents. No understanding why the drama and extreme everything are constants. They were just pulled alongside in the constant barrage of emotion, sensation, and rumination that was, and is, my reality.
In the journey from imagination to implementation, we get lost in the weeds. Alternatively driven and stagnant, perpetually distractible, emotionally reactive, organizationally scattered. Cognitive overactivation, they call it. The mind’s own busy-ness incessantly distracts itself so that time vanishes, meals are missed, deadlines pass, the journey down the hall to the bathroom takes ten minutes
It’s a constant scramble to catch up with fleeting thoughts and forgotten plans and indistinguishable priorities.
If you really think about it, as much of life is about processing and regulating our interiors. That is to say, how we manage our thoughts, emotions, and responses, and how successfully we analyze other people’s words and the encoded social messages that underpin those words.
How could I casually, flawlessly discuss the entire lineage of English monarchs from the twelfth century to the twenty-first, explaining in detail the War of the Roses, how it affected the way Shakespeare skewed his historical writing, and the many ways scholars kept up those narratives—how could I be “so smart … and not see the corner strategy in a Monopoly game.” Or not want to learn about it, if I really didn’t understand it.
One of the most delightful experiences for my autistic mind is immersing myself in some subject that has captured my fancy.
Planning involves evaluating needs, conceiving of options (including the people, opinions, materials, time frame, and circumstances involved), evaluating those options, determining what steps are needed to bring the selected option to
