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

by Jennifer O'Toole

I didn’t even fit in with the people who didn’t quite fit in. I’d get over it, I knew. I’d champion my kids and just keep moving … after this. This one, private breakdown.

the word itself a marker of inferiority. “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.

There are few things as tragic as when we tacitly agree to the notion that our unchangeable truth is somehow invalid.

When we agree to play, we not only hide and cast doubt upon our experiences. We’ve willingly participated in the invalidation of ourselves.

And when you have invalidated yourself, there is no limit to what you will allow others to do.

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.

Everything we do, we do intensely and often spend a great deal of time analyzing our own thinking processes (metacognition) as well as larger, complex ideas.

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.

Robin Williams said, “You’re only given a little spark of madness. You mustn’t lose it.”

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.

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.

Breathe slowly. Smell the roses (inhale, through your nose), blow out the candles (exhale completely out of your mouth). Again. Breathe. You’re going to be okay. You’ve felt this before—these feelings you have right now. Uncomfortable. Anxious. Embarrassed. Afraid. You’ve felt them, and you have survived. Breathe, and know you will survive this, too, wiser and stronger. The feelings can’t break you. They can hurt. They can sting. They can waylay your plans. But if you’ll sit with the feelings—notice them, stay with them without trying to run—if you do sit with them and really feel them—you’ll discover they have a bottom. They have an end. They aren’t all-consuming. You won’t drown in them. They will become shallower … eventually, shallow enough that you will begin to walk again. Keep breathing. Keep moving. Soon, you’ll emerge from the hurt. You’ll be able to turn around and see the far shore where you started. You’ll know that you made it through and that you are powerful and resilient enough to float above anything. Right now, that sounds impossible.

feels unbearable. I know. So for now, just breathe. There is a bottom and an end. You will get there. One breath at a time. This moment will pass. It will be over. And you won’t be.

There’s a situation Emily Post missed. What’s the correct response? “What were you expecting? Three heads? An Elvis wig?” Or, how about, “Thanks—so do you.”

remember when my daughter was a baby and toddler and was very tiny, mothers would constantly ask me where she fell on the weight index charts. Our pediatrician recommended I ask them where they fell.

Only that’s not a compliment at all. It’s a comparison based on the premise that “autistic” is an insult. A stigma. Or at least a bad thing. Because the only reason someone thinks of me as “high-functioning” is by holding me up to someone who is no more or less autistic—just more obviously challenged—and deciding that they are “lower-functioning.” Really, it’s no different than saying, “Oh! Well, good for you. You’re not too ugly. That gal over there? She’s royally ugly.” Lack of understanding tied up with a bow of condescension.

And me? I’m overestimated just as often because I’m so loquacious. What looks like “high-functioning” is really just “highly camouflaged.” My challenges aren’t less real. Nor are they less autistic. They’re just less obvious.

Appearances can be deceiving. Even as my mom witnessed the “glitches” in her own, recently diagnosed daughter—the very distress and disconnects that are characteristic of autism—she did not see autism. She saw stubbornness. Inappropriate choices. Dramatic hysterics. Default switches can be hard to override.

But in life, I gleaned that I was “stupid, stupid, stupid.” Something about me was obviously bad. Wrong. Irritating. And though you can cover a blemish, hide a rip, or disguise an injury, what do you do when you don’t know what to hide? When the trouble isn’t one thing that you do. It’s everything that you are.

you’re me, you keep studying, turning to biographies (lots of biographies) and to fiction. Characters. Archetypes. Costumes and makeup and body language. You put those mimicry skills to good use. You learn your lines. And you just stop telling the truth.

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

And when you hear something often enough from enough people in enough places, you believe it. I certainly did.

And we both know I can’t do life alone, even though most people looking at me probably believe otherwise.

Importantly, I have to caution typical folks who read this and think—hey! Now we can just teach her to plan or break things down or strategize or … whatever else. It doesn’t work that way. When we come to recognize the roots and reasons, the results make much more sense, yes. And yes, there are a plethora of apps, tips, and strategies all designed to support people with executive function trouble. Please notice I said support. There are adaptive tools to make life easier for people whose hearing is diminished or sight is impaired—but no one is going to try to teach them to hear or see better. To presume to do so would be not only arrogant, it would be ignorant. And insulting.

And. As I do for them, I need those same people to understand that I can’t be taught or disciplined out of autistic brain functions. Sure, I can practice drills and add to my bag of tricks and tools. But every new situation is a new situation, and EF skills are too interrelated and too interdependent to think that a repair here and some fine-tuning there are going to “fix” me. It’s not going away. It’s not.

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?

at least I’ve got the verbiage to help explain, negotiate, question, and clarify what the heck we’re all trying to say to one another. For example, when people say, “I feel that …” or “I feel like …,” what follows next is not actually a feeling. It’s a thought or opinion. And, while no one has the right to argue with a feeling, they have every right to debate a belief or idea. Given their confusion over what an emotion even is, it’s no wonder that folks have such a hard time communicating with people they care about. Most people are so busy declaring rather than verifying, creating false realities based on misunderstanding and mischaracterization, and mistaking their own thoughts for emotions that they don’t even know how they, themselves, actually feel.

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 may lash in slanted, cutting ways that really mean, “You hurt me deeply here in a way that hurt me on a bigger, lifelong thematic way. I’m mad at you for that. I don’t want to hurt. I don’t want you to be the one who hurts me. And I feel really bad about me and I need help. Please—don’t get scared off. Please be strong enough to find me in the hurting.”

But I’m not—we are not—wrong. Adjectives are opinions. Feelings. They are not absolutes. Annoying, easy, weird, confusing, boring, fun. They’re all opinions. So shouldn’t we all state them that way? With sensitivity and respect toward others who feel differently? It all begins with avoiding assumptions and learning the facts.

was being the only Jenny that got persistent, reliable praise. The relentlessly honed, never-quite-safe, constantly striving Jenny.

cried myself sick and then made a conscious decision. I would not forget the pain. I would not let myself forget how it felt to live within its irregular margins. To feel soul-raped. To feel loathsome and afraid. And in whatever form it took, my life’s mission would be to ferociously champion the right of every heart to be witnessed and loved. That decision remains the singular thread connecting my every venture, value, and story.

Though most listeners would never realize it, when an autistic person “shows” (i.e., talks about, or shares photos, links, articles, music, or memes about) topics on which she is expert, she’s not showing off for showing off’s sake. She’s trying to “infect” a potential friend with shared enthusiasm—trying to achieve a level of social confidence and transferred emotion. The awful irony is that we become our own undoing. Impulsivity and a tendency toward perseveration but away from reciprocity lead us

to dominate the conversation, redirect the topic back toward our favorite, and interrupt other people frequently. Our limited theory of mind makes it difficult to register when we’re boring or running off those around us—and executive function differences make it incredibly difficult to stop or redirect even when we do. As so often happens, we confuse attention for affection, prioritize accuracy over pleasantry, and instead of interesting and charming, we’ve managed to convey ourselves as self-centered and one-dimensional.

Even the very act of collecting information is joyful. The focus is relaxing, like a meditation. The rigor invigorating, like going on a great run. The reliability comforting, a buffer against the mercurial nature of people.

I’d painted word pictures full of ruby slippers and authentic beauty, of passions, and talents, and real people and real dignity. Of what it is to live thirty-four years without understanding the “why” of who you are and how you are. Of the greatest lesson autism has taught me—not how to be autistic, but how to be human.