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

by Jennifer O'Toole

After-Noah’s-Art-class lunch at Dean & Deluca could make or break a gal’s social prospects in a way rivaled only by middle school cafeterias. And though I was usually the one to suggest lunch (the best way to be included, I’d learned), I never actually got to join in. Week after week found me driving past the outdoor eateries, teary-eyed, watching the other mommies laugh and gossip while their little ones napped in strollers or happily chomped on Cheerios. My kids didn’t rest. They didn’t sleep or sit contentedly with a toy. They were … intense. And constant. So I was constantly wound up on hypervigilant meltdown-prevention duty. I’d try, on occasion, to connect—to explain why I was uptight … but people get turned off by things they fear will contaminate their world.

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.

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.

Atypical was a description of fact. Got it. Less of me, more of Them. But then something went wrong. The author began to use “typical” and “normal” interchangeably. I sat back and pursed my lips, thinking hard. No. That was inaccurate. Typical was about statistics. How many of something. Normal was a lot more relative. And a lot more … judgmental.

So, what if Belle’s Curve could be a different kind of bell curve? What if it could be beautiful? Perhaps, even full of possibilities and adventures that couldn’t be found anywhere else. And what if I could live my life there?

Today, I choose to keep dancing. To turn my stumbles into part of the routine. Because I’m making this up as I go along.

The really important finding is that the brains of girls with autism are also operating differently from the brains of boys with autism. 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.

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

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.

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.

There is a time and a place for the evaluation of intricate data. There are professionals who are trained to discuss the genomes. I speak in stories and pictures. I speak phenotype because real-life experiences make the science make sense. And because, after all, we are talking about people. Not data.

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.

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.

Which, to me, made no sense at all. How did one not think all the time—about everything? How did anyone not want to learn everything about everything? How could anyone not wonder about big questions like this? What was more, how could something be so clear in my mind—yet utterly confuse everyone else around me? My mind, then and now, always felt transparent—every thought obvious—clearly visible to everyone.

The amount of metacognition going on in an autistic mind could light up Manhattan. Just saying.

We impulsively underthink some things … while chronically overthinking others.

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.

Neurotypical parents, teachers, bosses, spouses, and friends won’t organically recognize the

symptoms of sensory/emotional dysregulation—they’ll get stuck on the inconvenience or disruptions we cause. Reprimand us for acting out or name-call when we’re too afraid or resistant. Complain that we are difficult or “high strung” when we dig in our heels.

If we don’t know that our neurology is different, we won’t recognize the ways our bodies ask for help before a crisis hits.

Though I am most certainly my father’s daughter, no one has ever loved me for being brilliant and bumbling. In spite of, yes. But for it? Never.

Truly. No finger waving here. Just explaining. The pain of “so smart but so stupid” is born in the space where ignorance lives. The truth is that we can all miss the boat entirely. Even neurotypicals.

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

It always does. Be it genealogy or the history of the English language or cake decorating, if my curiosity, imagination, and heart are captured in some way, I am going to learn and learn and learn and lose myself in the satisfaction of it all.

… a highly complex, highly important set of high-level cognitive processes called executive function (EF) and why they drive the discombobulation of all of us absent-minded professors (even the men),

and why our less-than-ideal EF is entirely responsible for a lifetime of “so smart but so stupid” and all the damage that follows.

The reason we feel “so smart but so stupid” is that we are lost, confused, alone, and misunderstood in the space between our intelligence and our executive function.

There is deep shame in knowing so very much about so very much, bursting with complicated, nuanced things … and constantly falling short anyway.

So much of the internal experience of autism is invisible to outsiders. No one else can see the struggle with our core cognitive differences—just the evidence of things gone sideways.

How many highly sensitive autistics have been turned away because they don’t fit a misinformed stereotype? Because they, like us, can sometimes experience transferred emotions so powerfully

that we have to escape them? Or go “shields up,” shutting ourselves off from feeling? Or live our entire lives determined to save the world?

I guess the thing with autism is that everything just takes a little more work to make it work.

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.

No child possesses the vocabulary or the awareness that her experience of the world is unusual.

We are most fragile when we are sharpest. Vulnerably angry.

In our Denver keynote, Dr. Gatto-Walden had explained that “ethically, morally, spiritually, the children I’m describing care so much that they see the world as their global community. See others’ pain as theirs to champion. Their responsibility.”

As Boston artist Leigh Standley scrawled into one of her illustrations, “I am fairly certain that given a cape and a nice tiara, I could save the world.” Amen, sister.

The voices in the victim-blaming chorus are loud.

Teachers can be right there in the room or on the playground and often be totally unaware of the social dynamics playing out in front of them.

Facebook fills in a major social void for me, connecting me with very close spectrum friends I’ve made overseas. But. In day-to-day life, time passes and invitations don’t come very often. I’m “fabulous,” says the world. Ah, well. More often, I’m fabulously alone.

When we respond to a name, a title, a cruel insult, or a loving nickname, we are agreeing that some part of the name fits.

Which means that even when we try to listen to and figure out our deepest selves, it can be really hard to tell which inner voice is truly our own.

As young girls, we are so very, very hungry to be included, wanted. To be elevated. To feel essential. That we are someone’s favorite.

Over the years, I’d been told outright that I was difficult to love. And when you’ve come to believe that, as I had, you’re willing to love for crumbs, no matter what degradation comes along with it.

I didn’t tolerate awful things because I was needy or insecure. I was needy and insecure because I’d had to tolerate awful things.

Besides, I didn’t hate him. I hated me.