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

by Jennifer O'Toole

For thirty-four years, I didn’t know I was autistic. But I’d always sensed that I was different. I’d always felt the frantic need to find my footing. And in hindsight, that may be exactly why I’ve always known that I had a thing for shoes.

I can relate but it has been 50 years for me. I do not have a thing for shoes but for science and numbers. I also hurt myself trying to fit and get accepted.

I’ve been called names my whole life long. They’ve been among the identities I saw in the mirror and wondered at the fit. Then came a new name: autistic. And that one has changed everything about everything.

I can relate here too.

I’m a person for whom social nuance is absent. That’s key. That’s autism. Yet publicly and privately, I’m still expected to navigate the minefields deftly—called out when I don’t. It’s ironic, really. A bit like chiding a blind person who trips over your foot … while she’s competing in the Special Olympics … where you are part of the cheering crowd. Not quite fair. Because, just like everyone else, I’m just doing my best. And no label is one size fits all. Not woman. Not female. Not autism.

Exactly this. Especially in Greece. I absolutely hate family gatherings. I learned how to eat quickly to escape into my world of books and science. And escape my relatives.

to know the Someone Else you came here to understand in the first place.

Myself

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.

Exactly this. My brain needs information. Data. I need to make sense out of it. It has to compute.

Maybe autism hadn’t skipped a generation. In fact, maybe it would explain every disconnect I’d felt for the last thirty years.

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. No wonder I couldn’t find my reflection. How was a catalog of autism spectrum characteristics based on little boys in prewar Vienna going to help me? In twenty-first-century suburban America. In a minivan. And bra. With a predisposition toward glitter.

They stop listening when you let the smile out of your voice for too long.

At the same time, though I hated myself for feeling it, I was tired of living beyond the realm of easy. Decade after decade, relegated to watching the life I wanted play out. Too close to look away. Too far to be remembered. This was the perpetual “almost” that I wanted to understand … if I could understand autism. And me. And if I could keep it together long enough to get to “someday.”

We will never have it easy. We are autistic. Social interaction is hard.

Big question. And I was going to find the answer. Of that, I was certain. For all of my other insecurities, when faced with intellectual puzzles, my confidence never wavered. Since early childhood, I’ve, inexplicably, been able to see information differently from other people. Be they words on a page or two musical phrases in an entire score, patterns have simply emerged to me that somehow seem invisible to everyone else. So, as long as facts, not folks, were what had to be solved, the system was simple: I’d begin with what I knew, gather as much information as possible, then sit back and watch. Like pictures hidden within Magic Eye paintings, the answers show themselves. They always did. They always do.

Yes here too. Patterns emerge and can be clearly seen.

I had it instantly. Intuitively. The beauty of order. The reliability of fact. People are changeable. Unpredictable. Facts, though, are sturdy. A display of pleasure without anxiety. That was the reason for the beloved train schedules and mapmaking.

“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.

And then there are the outliers—those remaining few furthest from the norm, who barely squeeze under the rim. From my red hair to school smarts—and later, to my intensity, drive, and lifetime full of almost-never-ending crises—this has always been my domain. I just never truly understood why.

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. You’ve been making turns and choosing highways, feeling in control when, instead, you’ve been on autopilot the whole time. Sure, the specific scenery along the way differs from person to person, like variations on a theme of music. But by and large, you’ve taken the neurologically prescribed route as surely as if you’d been using a DNA GPS, reliably exhibiting “spectrummy” patterns and preferences the whole way.

Yet. Without the legitimacy of a profile to fit or a name to be called, my reality, my just-as-authentic-as-anyone-else’s neurology, sounded like nonsense. Even to me. I’d learned to wear masks. To adopt other people’s versions of truth and reject my own. And through that wide-open door came all harms that have ever been done to me by others or by myself.

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.

Not going to camouflage any more. Done with that.

As we grow into adolescence and womanhood, social rules get more complicated. Stakes get higher. Our gaffes get bigger and more dangerous. We make friends and fall in love, but we aren’t particularly good at recognizing conflict in those relationships before they implode. As kids, maybe we were ignored at school. Now we’re ghosted by someone we’ve been intimate with, clueless, until then, that there had ever been a problem. We may have burned bridges that impact the lives of our family members. Or have totally misread professional situations—like, perhaps, going into a biannual review prepared to ask for a raise, only to discover we’re being let go. She says from personal experience.

These are the “failures” that feel relentless. Inescapable. Like cheap shots to the gut when your guard is down. We are pulling the carpet out from under ourselves, tripping into invisible pitfalls we’ve helped to dig. These are the “failures” we so often try to remedy by taking control of something—perfectionism, compulsions, addictions. Punishing our bodies. Punishing our own hearts.

Autistic neurology classically involves challenges to executive functioning skills, like

difficulty with switching tasks and working memory, with scattered attention and social anxiety.

trying to hide in plain sight is frustrating, disorienting, isolating—an exhausting game of (only possible) short-term gains in exchange for very-certain long-term exclusion. When we agree to play, we not only hide and cast doubt upon our experiences. We’ve willingly participated in the invalidation of ourselves.

People on the spectrum can be particularly literal in our interpretation of language (which makes for all sorts of bumbling).

I connect dots that typical minds don’t see. I really do “catch words” and ideas in front of me as if they were on a giant touch screen. That really is how I think. It’s how I can detect patterns within vast quantities of information, sometimes seeing arrangement, form, or relationship between experiences or facts that I encounter decades apart.

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.