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

by Jennifer O'Toole

The calling card of autistic brains—the single most omnipresent, most impactful distinction of our minds versus the neurotypical—is the discrepancy between our executive function skills … and everything else.

In firefly mode, we are everywhere at once. Mentally, we alight from idea to idea to idea, excited by novelty and energized by the connections we make. New possibilities, new patterns, new everything is everywhere!

Some of us spend more time as trains than fireflies, some the reverse, some are equal-opportunity thinkers sliding back and forth and hanging out in between.

Because our mental energies are spent so differently, tasks that require planning, organization, working memory, time management, or flexible thinking can become mammoth challenges.

Regardless of class rank or intellectual acumen, our most painful struggle is against a never-ending sense of inadequacy. What good is “intelligence”—what good are we when life’s most basic, mundane tasks bewilder, stymie, and derail us?

Being identified as having autism did not rewire my mind, which still darts like a firefly and drives like a train. But discovering the autism answer did lift some of the feelings of blame from my shoulders, turning the issue into one of scientific cause and effect. It proved, unequivocally, that I am not now, nor have I ever been, lazy or disinterested, irresponsible or self-centered.

By learning and understanding the workings of our minds, the power of self-determination becomes much more our own.

An autism diagnosis is not a get-out-of-jail-free card. No one is entitled to be intentionally disrespectful of another person

when in doubt about me, default to kindness.

autism is a condition of neurological distinctions that are based in the brain. We don’t actually have different brains. We have differently wired, equally human brains. Human functions—like feeling—aren’t missing, for crying out loud. They’re just different in brains that are neurologically different, regardless of which way the comparison is made.

Emotional modulation that works more like an on/off light switch than a dimmer.

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

while no one has the right to argue with a feeling, they have every right to debate a belief or idea.

A feeling, you see, is always an adjective:

anger is a Band-Aid feeling. It’s real and very much present and has to be moved aside gently because its real purpose is to protect a wound underneath.

How do people learn what emotions they’re feeling in the first place? Social feedback.

Feelings, though, are interior things. You can’t see a feeling—you can only see how a feeling manifests as expression and behavior.

I was naive, I was different, and I came off as pretentious and arrogant, I know. That’s not because I was either pretentious or arrogant. It’s just that smarts were how I garnered praise. And my ability to accurately imagine another’s perspective was so off that I thought if I tried hard enough and did well enough at everything, kids might like me for the same reasons grown-ups did.

we on the spectrum don’t do that. Not fully. Not ever. We are mind-blind to the strategies and subterfuge of those who would hurt us. We can’t intuit perspective. And so, in many, many ways, it’s no surprise that, without the benefit of diagnosis, we will not receive the explicit social teachings, keys, clues, and self-esteem reconstruction that absolutely can secure up our coming of age.

if a child is lonely, every other aspect of his or her life (and yours, too) suffers.

Anxiety is little bit different. Imagine the volume of that fear is turned down just a bit so that’s it’s not so immediate a threat or so acute a danger. Instead, it’s replaced by 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.

Courage is, after all, the choice to feel fear and to master it—to do the “scary stuff” anyway. Those of us on the spectrum have to choose to be courageous almost every day … like that little girl in the bedroom back in 1982, when we are afraid (even if that fear is unnecessary), we certainly don’t want to feel condescended to or be punished. We need understanding, respect, patience.

Misunderstood, marginalized, well-meaning underdogs. We “get” them. Heck, we are them! After all, for those of us on the spectrum, “otherness” isn’t fiction. It’s reality.

mammals will first try to avoid danger—that

If we can’t get away from social rejection, we get aggressive.

That’s our shield. We are trying to immediately stop what feels like a threat.

Without a clear understanding of the whys or whens, we negotiate daily social situations that seem random and chaotic, building families, marriages, and incomes upon the relationships we are able to reap in those environments. 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.

It’s very hard to know where people are coming from and to fight the fear that they mean us harm.

The truth is that we don’t really know what others will say or do in any given situation. We just think we do. So, we don’t bother to communicate. We assume. We misinterpret. We push them away. We flash fierce. And in the process, we cause heartache (for others and for ourselves) that needn’t exist in the first place.

diagnostic guidelines for autism now recognize the omnipresence of a “special interest,” though the descriptor—“highly restricted, fixated interests that are abnormal in intensity or focus”—belies

Our passions are like lightning rods, immersive and sacred, deeply enmeshed with our sense of self and life in a neurotypical world. They are windows into who an individual is, who she wants to be, and what she wants most out of life. They offer the purest way of touching our hearts—and the most powerful way through which we will try to reach yours.

She’s trying to “infect” a potential friend with shared enthusiasm—trying to achieve a level of social confidence and transferred emotion.

Whatever the specifics, give us an encyclopedia (or Wiki page) of information, and we have something to do with our fidgety, restless brains. Memorize. Categorize. Draw. Write about. Dream about. Reenact. 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.

Each of these interests leads toward fandoms, which are, for all intents and purposes, our people. They are part of Geek Culture.

Because fandoms are family. They’re legitimate havens, true subcultures with language, music, stories, art, and even clothing that carry deep meaning.

Clothing is about comfort and practicality, sure. But above all, it’s about respect. Self-respect. Respect for an occasion. A host. About consciously learning and acknowledging what is appropriate for the formality, culture, import, and environment of a situation.

Fashion is something different. It’s clothing raised to art form. An evolution. It’s respect infused with perspective, personality, voice, humor, and intention.

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. That it’s appropriate. That somehow, we recognize ourselves in the words we hear—

because again I saw that if a woman can’t be taken down by attacking the content of her work, the next (but totally irrelevant) target is her sexuality.

Indeed. There is a spectrum of ways to “do female” even on the autism spectrum.

No one consciously trades in her dignity. No one surrenders herself without reasons that seem, in the moment, clear and right and convincing. We misunderstand jealousy and control as proof of how much we’re wanted. Are seduced by the foreign prospect of being adored, essential.

We trust easily because we don’t see strategy or others’ self-serving behavior.

If you believe you are worthy and strong, you will live up to that truth. If you believe you are unworthy of love or happiness, you will live up to that truth, too.

scripting is an intrinsic part of how our brains learn to mimic desired behaviors and prepare to meet social expectations more automatically.

Everyone wants to feel like a success. And we, on the spectrum, have often had more than our fair share of unexpected “mess ups,” leading to more than

our fair share of teasing, rejection, and insults. It’s not really too surprising that, if we are told we “are” something special—smart, talented, creative—then maintaining that identity holds a great sway over our self-esteem.

We absolutely want to be liked … we do want to feel loved. The issue isn’t apathy toward other people. The issue is that people are malleable and affected and, often, false. So, what delights one individual on one particular day in one particular circumstance can cause utter mayhem, outrage, or rejection in the same person in the same circumstance on a different day. It takes thousands and thousands of experiences to even begin to assemble a pattern that may lead us toward inclusion. And that’s just too many maybes and maybe nots—too many subjectives by which to live your life (which would be the entire reason I wrote my second book about “secret social rules”).

To spectrum minds, too much choice is paralyzing.

Repetition within known parameters is a comfort to everyone on the human spectrum—the rhythm of our mother’s heartbeats, the soothingly familiar words of nursery rhymes and lullabies, the feeling of being rocked when we were small and afraid and upset. Redundancy is a fundamentally human way of achieving physical and emotional calm, of imposing a sense of control upon a random, subjective world—especially when we feel overwhelmed.

Research has shown there are similarities in the way people with autism and addictions use repetitive behaviors to manage emotions, as well as in the tendencies toward impulsivity and compulsion.