Autism in Heels: The Untold Story of a Female Life on the Spectrum

by Jennifer O'Toole

And then there was silence. Somewhere in the office, a murmur. “Jennifer? Jennifer, why does it matter to you? The diagnosis?” Suddenly, the room was back—or maybe I was back in the room. My body shook. My eyes burned. Someone closed a door in the hall. “Because,” I replied, “it would mean that I’m not a total failure at being human.”

It was a sensation I knew well. From friends. Boyfriends. When my dad would light up or my mom would roll her eyes impatiently, telling me to get to the point. Something about me, though I couldn’t name it or change it, was always too much.

Information has always been my life preserver when feelings get too deep. My dad was the same way. Facts. Theories. Give my brain something to grasp hold of, and I will not drown. No matter what.

In the intensity of the drive toward “display-focused” play, of the stress over other kinds of interaction, and of the distress in any change in the order created, I could see some of the uniquenesses of an autistic mind, like literal thinking, cognitive rigidity, and difficulty, with spontaneous social interaction.

“Autistic” is a neurological, not pathological, profile—a constellation of highly attuned cognitive and sensory skills that happens to come packaged along with some equally exquisitely particular challenges.

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. In other words, while those of us with autism may all be skirting the edges of various bell curves, we gals ought to be dancing . . . on the Belle Curve.

It shouldn’t take half a lifetime—plus research and investigative work by the individual herself—to declare, “Congratulations! You’re not broken. You’re a different kind of normal. Now. Let us tell you all about some things that might be challenging and how to navigate them. Not to mention all the wonderful talents that you have that you probably never considered to be lovable, wonderful gifts. And, oh, by the way—there are loads of people out there just like you. So, welcome to the club!”

The reverse-self-discovery process of receiving an adult diagnosis is bizarre. 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.

Scans showed that each autistic girl’s brain behaved more like that of a typical boy of the same age, which, compared to typical girls, has reduced activity in regions normally associated with socializing. The brain-activity measures of autistic girls would not be considered “autistic” in a boy. Instead, the brain of a girl with autism may be more like the brain of a typical boy than that of a boy with autism.

Among autistic woman and girls (whether identified or not), there is, in fact, a social phenomenon known as “camouflaging.” Simply put, it’s a masquerade in which we work, both consciously and subconsciously, to “pass” as neurotypical. Or at least not autistic. Or autisticish. It’s impersonating someone else’s world. And it’s a full-time job, with a declining success rate as we mature.

If we don’t camouflage well, we tend to find ourselves ridiculed, shamed, ostracized, or abused. If we do camouflage well, we can disguise ourselves right out of identification, not to mention out of the compassion, resources, and insight diagnosis can bring. Instead, our misunderstandings are misread. Our intentions mistaken. We are vulnerable to the presumptions we’ve allowed others to make about us about our abilities to discern friend from foe and predator from lover, about how much direction we really do need, or self-awareness we really do have.

Autistic neurology classically involves challenges to executive functioning skills, like difficulty with switching tasks and working memory, with scattered attention and social anxiety.

The world only changes—grows—stretches and changes and evolves and gets beautifully, magically better when someone thinks differently and does differently, too.

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.

Perfectionism is the all-hallowed deity (and nemesis) of the majority of spectrum girls.

The experience of life from within any group has to be described by members of that group.

She’d told me I was exhausting her, only . . . I didn’t know how to not be exhausting. I was only six, after all. Which meant that, in my mind, the only really “obvious” fact was that I wasn’t worth answering. That understanding me was a bother. Connecting with me was unnecessary. A nuisance. Draining. Which meant that I, too, was unnecessary and a nuisance and draining.

Clinical psychologist Dr. Kristalyn Salters-Pedneault writes, “Like a chameleon . . . [those with a diffuse sense of self] change who they are depending on their circumstances and what they think others want from them.”

Even in an absence of major incidents, the residue of “little t traumas” accumulates: bullying, educational and professional uncertainty, emotional manipulation, discrepancies between what we perceive or express and what others see or express, and gaslighting (being convinced that mistreatment is the invention of one’s own mind) make it difficult to imagine—much less establish—healthy interpersonal boundaries or a sense of where “I begin and you end.” 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.

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.

Feeling that we have let down our parents is a pain anyone can understand. But feeling that one’s innate self is a letdown just slays you.

“It’s wondering . . . always wondering and never understanding: how can I be so smart and still feel so stupid?”

Our minds are more prone to zooming in intensely on parts—of things, of ideas, of conversations or dialogue, of sensation, of writing, of puzzles or equations, of problems—but when we’re presented with a whole task or idea or concept (called the gestalt or “big picture”), ironically, it can be hard to see those small, more manageable parts, much less figure out how to come up with a strategy or plan of action that doesn’t trigger our social anxiety or sensory sensitivities so that we choke up before we start. We’re called lazy and irresponsible because we seem to just be procrastinating or uninvested, but really, we are probably overcomplicating things.

There is deep shame in knowing so very much about so very much, bursting with complicated, nuanced things . . . and constantly falling short anyway. To our parents, teachers, friends, spouses, and employers, we are confounding disappointments. To ourselves, we are fearful frauds, sure that our ineptitude is as obvious to others as to ourselves. And through it all—as best as our brains are capable—we are trying to remember it all. To be on time. Prioritize well. Get started. Remain flexible. And stay calm.

the myth of the unfeeling autistic who cares about no one but herself is, in fact, just that—a complete and utter myth. Actually, it’s far more and far worse. It’s an ill-informed stereotype built on incomplete understanding and bad science, carrying with it serious moral, ethical, and practical implications for millions of people around the world.

Dr. Gatto-Walden spoke first, and though I already knew the substance of her talk, the particular words hit. Hard. “A highly gifted child who is five years old talks like a nine-year-old child, asks questions like a nine-year-old child. A profoundly gifted child [that’s someone with an IQ of 145 or higher . . . which includes me] talks and wonders like a thirteen-year-old.” By definition, we are asynchronous in our development. We are, I’ve often said, like Swiss cheese. Strong in some ways with holes in others.

“Add in the emotional sensitivities we see of spectrum children,” she continued, “and these girls may act more like a three-year-old at five or a five-year-old at nine—imploding or exploding. They’ll often need more or specific types of physical contact. May cry more. Need security objects.”

Feelings, though, are interior things. You can’t see a feeling—you can only see how a feeling manifests as expression and behavior. So what happens if our outside doesn’t match up with our insides? Or if our outward expression doesn’t show a particular emotion in the way our teachers, parents, caregivers, spouses, or even therapists expect? Simple. Everyone gets extremely mixed-up.

Alexithymia includes the following: • difficulty identifying different types of feelings • difficulty expressing feelings • difficulty recognizing facial cues in others • limited or rigid imagination • constricted style of thinking • hypersensitivity to physical sensations • detached or tentative connection to others

Remember that we defined empathy as “the ability to understand and share other people’s emotional state.” There are actually two parts to that definition because there are actually two kinds of empathy—cognitive and affective—each of which draws upon its own distinct set of skills.

“Cognitive empathy,” commonly referred to as “theory of mind,” is the ability to understand the feelings, intentions, and motivations of others without having to have them explained. And that’s a problem for us, because, when compared to typical brains, autistic minds are severely deficient.

Cognitive empathy, then, is a concurrently occurring, multiple-perspective awareness. Neurotypical kids aren’t super at it—but do grow into it naturally. We don’t. Ever. We either don’t notice or don’t understand the thoughts we make others think about us—in fact, we have to learn even to consider that others may have reactions distinct from ours. That what is “obvious” to us isn’t a given for everyone. For us, “remembering to look both ways” does not come naturally. It takes conscious effort. Always. It accumulates slowly, one situation at a time, day upon day, year upon year, and always—always—by intellectualizing. It’s never “just there.”

Life on the spectrum is a literal roller coaster that whirls from giddy nervousness to completely overwhelming anxiety, a gnawing, jittery, ever-present sensation of waiting for the threat . . . waiting for the fear. It’s like living with the Jaws music playing. You don’t see the danger. But you surely know there’s something “out there.” That’s anxiety. We spectrumites, whose bodies and minds are wired a little differently, live with varying levels and intensities of almost perpetual anxiety.

No child possesses the vocabulary or the awareness that her experience of the world is unusual. When her body alerts her to danger, and she reacts to those very real physiological alerts with resistance or rebellion or retreat, how is she to educate the adults who misunderstand her as difficult and high-strung?

We have no neurological translator to interpret the world for us or explain the logic behind the many ways we fight for some artificial sense of control. To tell the world that we are not inherently bossy or bad or uncaring. That we are lonely and, brilliant as we may be, unbelievable as it may sound, we don’t know how to do better. So we step on toes and offend others. We seem self-centered when trying hardest to connect. We may blame others. We may raise our chins too high, arrogantly trying to disguise our insecurity. We mimic expertly or hide away. And we learn from experience that there is no one coming to save us, because we can’t even explain exactly what’s wrong or imagine what would help . . . besides simply disappearing.

We simply cannot intuit what others do. We misunderstand. And they misunderstand us. We know what it is to be resented, and even disliked by those closest to us from early on. And we don’t expect good things to last for long. From classrooms to workrooms, we are accustomed to feeling victimized, shamed, cast aside; to say such things aloud would sound paranoid or suspicious; more often than not, we don’t speak up. Not even to ourselves.

Experience teaches, again and again, that while we possess certain unique abilities that can transform society for the better—pattern detection, information recall, laser-like focus—those skills are almost inevitably overshadowed by our social missteps. By our inability to intuit others’ perspectives while perceiving our own as obvious, singular, and without need of explanation. By our own impulsivity—hyperbolic, almost heliotropic reactions to glimpses of what may (or may not) be kindness. By believing others to be as transparent as we think we are. By trusting their intentions will be selfless and genuine. By not recognizing how we end up in predicament after predicament. And by not noticing the predators—who see it all and are everywhere.

Inadvertently, we offend or come off as insensitive or somehow inappropriate, and we know that very often, we completely miss the first, subtle signs that we’ve made waves. So we’re used to feelings getting big and problems getting bigger before we spot them, always wondering where the next explosion will come from a bomb we never knew we’d set off in the first place. It’s only natural that we’re in a constant state of hypervigilance. We know, from experience, that until someone explicitly gives logic to their feelings, we won’t really know why what we’ve said or did has caused harm or consider how else we might have responded.

Not only can’t we pick up on “subtle” feedback—we don’t even know we’ve missed anything to begin with . . . not until it’s too late, and no one is speaking to us anymore.

The big problem for us is that as long as professionals and the public mistake perspective-taking “cognitive empathy”/“theory of mind” for empathy in general, we are wildly misunderstood as being cold, shut off, and uncaring, when nothing could be further from the truth.

Once we remove the perspective-taking pitfalls, we’re talking more about catching feelings than understanding thinking—we’re talking “affective” or “emotional” empathy. Formally, it’s our ability to respond with an appropriate emotion to another’s mental state. Informally, it’s how we feel and behave if/when we understand what someone else is going through. Largely, it’s what we usually refer to as sympathy or compassion—feeling delighted or afraid or concerned or thrilled for someone, doing what we can to alleviate any suffering, and securing them in love. That’s emotional empathy. And that we’ve got in spades.

Affective/emotional empathy is powerful stuff, which is why it can quickly get too big to contain.

We have such a difficult time discerning the edges of ourselves and others that we may feel as if we were about to be absorbed, paralyzed, and drowned by their emotions. So when we “catch” other people’s strong feelings—especially if they stir up emotions that have brought us great pain in our own lives—we experience their feelings as our own.

Our hearts can feel so exposed, so raw that bearing one more sorrow would break us. So, when we don’t have healthy activities to busy our perseverating brains or a support network to help us process, survive, or even harness it, many people simply try to turn down the volume. To numb the extremes through alcohol, drugs, sex, pornography. Through compulsive exercise, cutting, or starving ourselves. Through binge-watching TV, gaming, or getting lost online. In the moment, it can be hard to care about danger if you finally feel relief.

What most neurotypicals don’t realize is that we spectrumites, whose bodies and minds are wired differently, live with varying levels and intensities of almost perpetual anxiety.

Anxiety is that root. It is the seed from which our topical fixations and “overly sensitive,” routine-driven, black/white, obsessive behaviors arise. We are trying to catch the rain. We are trying to create predictable order in a chaotic, often random world . . . by asking a million questions, by challenging exceptions to rules, by scripting dialogue we know was funny (once) or dictating play. It’s not that we want to be unlikable or difficult or dominate the conversation with topics you don’t enjoy. We just want to feel secure, safe—and to be able to stop the endless waiting for unwelcome surprises.

It’s easy to see why we’d feel as though we need to keep our guard up. We’re walking through a social minefield with blinders on. Trouble with theory of mind, reading tones and interpersonal cues, understanding perspectives, and detecting hidden motivations mean that danger feels random—chaotic—and ever looming.

We’re each individuals, of course, but there are most definitely common themes—one of which is that we are amazingly good at thinking all is well at our job, in a friendship, with our dress, when, in fact, we’ve managed to upset, anger, or embarrass other people. What happens next? We tire people out. We annoy them. We hurt or offend them. And a lot of times, we end up alone.

Generally, we understand things, people, ideas—life—using inductive reasoning. We go from the bottom-up, starting with specific, concrete experiences, facts, and examples. Then, we spot trends, notice patterns, and discover bigger concepts that link it all together.