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

by Jennifer O'Toole

people get turned off by things they fear will contaminate their world. They stop listening when you let the smile out of your voice for too long.

Normal, I think, is something so usual that we no longer notice it.

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.

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.

Studies show, over and again, that in any group, social intelligence is actually five times more important to success than individual IQ.

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

We can have a very difficult time navigating the complexities and nuances of female friendships,

Our friendships can be broken down into eras where close ties end abruptly, though the cause of the “breakups” may elude us as we break hearts and provoke tempers without even realizing it.

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?

the subjectivity sent my brain into absolute overdrive. How did I know what they understood to be “the worst pain ever”? Did it mesh with my perceptions, or were we totally off? How could a doctor or nurse get any kind of clear information about me if I was languishing between numbers, utterly perplexed as to what to say?

That’s because she thought you had to name the child by the formal version, and then use nicknames if you wanted.

For example, I turn on the closed-captioning function whenever I watch videos, something I’ve noticed other people on the spectrum doing, as well. There’s nothing wrong with my hearing. I flip the switch because dialogue can move too quickly for me to accurately register the changing facial expressions and body language of multiple characters in multiple settings. By adding emotionally “neutral,” unspoken dialogue to what I see, I gain a verifiable reference tool to inform my understanding and the reactions I have to the story.

“Why be good? Why be honest?” I shouted despondently. “Why be kind or giving or relentlessly positive if those who know me best still default to thinking suspiciously of me?

Working Memory is a type of short-term memory responsible for holding on to snippets of information (a phone number, why you walked into a room, what you were saying—or writing) and using them to complete a task.

we often misread or don’t recognize the social cues, body language, tone of voice, and social rules that underpin all communication, whether written and spoken; result—sarcasm can be hard to detect, language is interpreted literally (e.g., the period egg), the telephone is detested (no visual cues), texts cause blowups, and I watch TV with the closed-caption subtitles.

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.

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.

I always thought that my head—well, my face—matched up pretty well with whatever was going on in that heart. However. Very, very recently, I have discovered that is not, in fact, the case.

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

In my little town at my little school, teachers had freedom that modern teachers don’t. They knew I was bored in class, so they’d let me go—alone—to the school library … for hours. What a gift!

Whatever and whoever came too close, I would spoil, without knowing how I’d done it. And then I’d be despised. Then abandoned. Over and over. And over.

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.

we fully expect to be undercut, undermined, abandoned, ridiculed, and traumatized. And more often than not, we are right.

I am a helper because I want to be, yes, and also because I cannot effectively do anything else.

“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.”

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.

When I have cereal for breakfast, I eat strategically—because I don’t want to leave one flake or one O by itself in the milk.

the world thinks we are cold … when in fact, we are melting inside. What looks like coldness to the outside world is, in fact, a response to being overwhelmed by emotion and fear of being overtaken by it—a tidal wave of compassion that breaks our hearts, too.

The instant follow-up question to hearing “lung cancer” is, of course, did he smoke? Yes, he did. And, he still didn’t deserve to die.

I’d been disappointed in myself—but from any other person’s perspective, I was insulting them, too.

Somewhere along the way, I remember asking my mom to teach me how to make friends. But back in the eighties, my mom didn’t know what to make of that. “I didn’t know how to teach someone to have friends,”

Overriding triggered emotional responses isn’t easy. Where there is fear, there cannot be trust—“one cannot live while the other survives.” And without trust, there can be no love … no possibility, no hope.

But life doesn’t pause for us to unpack and heal. We’re figuring out which is which and what is what while living every day.

I felt better about myself around adults than I did around other kids. Unlike the children, adults were more tolerant of—and, in fact, often praised—my “little professor” precociousness, expected less conversational reciprocity (back-and-forth), and had more patience with my blunders.

we tend to have far greater social success with (and thus prefer the company of) people who are older or younger than ourselves.

And more often than not, we either come away feeling unheard or spoken over or, sure that our perspective is the perspective, have unwittingly taken control and burned bridges in the process.

always ended up as an afterthought or forgotten entirely. And there I was, eating lunch alone again. How and why was it that I was always me on the outside?

But one on one, the enchantment always turned toxic. Somehow. I didn’t know why, but I knew this … give me long enough, feel strongly enough, stay close enough, and I would make anyone hate me. Guaranteed.

If we believe we are destined to be misunderstood, we talk ceaselessly, explaining and dissecting every word.

In fact, I’d add that many positive answers would also be reactions to our negative experiences, such as “She responds to your texts” (because we’ve been ignored or shut out) or “She invites you to parties” (versus being left to hear about the fun we weren’t invited to share). Unfortunately, we haven’t had enough good experiences to give us a solid idea of what friends are supposed to do.

We expect the rest of the world to be the kind of friends we would be in return. We think, naively, that other people’s intentions are as pure as our own. We are oblivious to hidden agendas or manipulation. It is our biggest weakness—we can’t see another’s perspective, so we cannot imagine they would want to hurt us, when all we want is to be friends. And over and over, we are brokenhearted when our false friends show their true colors.

We tire people out. We annoy them. We hurt or offend them. And a lot of times, we end up alone. Is it really any surprise, then, that one of our most universal, persistent thoughts is: why do they always end up hating me? Most of us on the spectrum have had “eras” of friendships but never really seem to be able to keep them going over time. Either we don’t know how to make friends to begin with, or we are “super hot then super cold.” We charm everyone, only to eventually find ourselves “blown off” or downright “kicked out” in the long run. And, after enough cycles of that pattern, you can’t help but wonder how long until you pull the carpet out from under yourself again.

I’m completely petrified of feeling left out. Again. It’s probably just a matter of time, though. We both know that I always manage to blow it somehow. Just give me long enough and I’ll screw up any friendship. Seriously, I wish someone would just give me some rules on how to be “normal” … let me know when that book comes out. It seems to be the only one I haven’t read.

Over the years, I’d been told outright that I was difficult to love.

There has to be a reason, we figure, for the serious dislike we seem to inspire over and over again … something that would explain how we could mean well but always end up making everything come out so wrong. After all, what has every disaster—every want-to-crawl-in-a-hole-and-die moment—had in common? It’s not the other people involved. It’s not the places where they happened. Nope. The only common factor we can find in every disaster is ourselves. To my mind, experience had proven over and again that given enough time, I could successfully irritate and tire out any coworker, friend, boyfriend, or family member into not just being done with me, but into seriously disliking me … and quite possibly even hating me.

she read biographies, so she could, as she once told me, “figure out how to be.”

too much choice will halt you in your steps.

Instead of indulging in cover-up chaos, undereaters (like I was) discover relief—even a sense of power—in artificial control. As I got hungrier and hungrier—and then suddenly, somehow … numb (my brain literally shutting down)—there was a kind of euphoria.