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

by Jennifer O'Toole

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.

Sensory sensitivities and overcognition make it difficult for us to filter out environmental stimuli (lighting, smells, textures, conversations, music, etc.); we become easily distracted and are unable to refocus on the original task/conversation, leading to nonlinear (jumpy) thinking and disconnected/confusing explanations/storytelling.

Problem-Solving is a multistep process of activities related to noticing, overpowering, circumlocuting, and/or neutralizing obstacles in order to reach a desired goal.

It depends on the success of almost every other EF skill; recognizing that a problem exists (a clear precursor to trying to solve one) is incredibly difficult due to our trouble identifying our own and other people’s emotions.

Verbal Reasoning is the ability to understand, analyze, and think critically about concepts presented in words; not limited to vocabulary size or reading comprehension, but equally about discerning a speaker’s written or spoken main idea, tone, perspective, and intention.

We have frequent difficulties accepting and responding to assumptions we find illogical or inaccurate (multiple choice and true/false questions are a nightmare—too many unclear nuances and alternate possibilities to even answer. And sometimes open response questions, too.

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.

Inhibition is the real-time ability to pause, think, and choose which ideas, feelings, and actions to suppress or allow, whether consciously or subconsciously.

The very colors and sounds and textures of the world are so hard to ignore; we have significant trouble identifying our emotions and are overwhelmed before we realize it; we struggle to remember that our experiences and feelings and ideas are not “universal”; what people say and think and feel isn’t necessarily what they mean; the directions we hear are often incomplete or misinterpreted; alternate choices don’t occur to us; attention is unpredictable; ideas are fleeting; anxiety builds and reminds us of all there is to dread … and we blurt and post and hit “send” and regret it almost immediately, act out impulsively—both emotionally and physically, restrict conversation topics or “brain dump” even though we know other people are bored or annoyed, but we absolutely can’t

seem to stop ourselves and make hurricanes out of raindrops—jumping to the most catastrophic scenarios, acting on the logic of anxiety instead of possibility, wounding ourselves and our relationships in the process.

Our minds are more prone to zooming in intensely on parts—of things, of ideas, of conversations or dialogue, of sensation, of writing, of puzzles or equations, of problems—but when we’re presented with a whole task or idea or concept (called the gestalt or “big picture”), 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.

Monitoring of Action is the error detector and corrector, constantly operating in the background, alerting only when there is an abrupt change nearby or taking the foreground in unfamiliar circumstances or when learning a new skill so that mistakes can be noticed and adjustments made quickly and frequently.

The vicious sensory processing/environmental, filter/selective, attention/working memory cycle is so very challenging that we tend to find ourselves in a much more regular state of emotional hypervigilance, a state of alert that makes it hard to distinguish a real situation in need of attention from any other moment, leading us to either overreact to the smallest hint of error or become so overstimulated that we need to tune out and “reset” by physical stimming (motor distractions like tapping or bouncing, or mine, running my fingers back and forth over my cuticles), vocal stimming (talking or singing or running scripts/accents), or mental stimming (losing ourselves in a special interest)

Cognitive Flexibility is the ability to shift, adapt, reconsider, and adjust thinking and/or attention in response to changes in the situation or environment

Challenging to Spectrum Minds Because: Difficulties in other EF processes (especially planning and problem-solving) make it harder for us to form new thought and behavior patterns, which are necessary for anyone to adjust to any change of any magnitude; since adapting is that much harder, it’s that much more anxiety-producing, so—out of anxiety and fear, not stubbornness or disrespect—our thoughts and opinions crystallize into rigid, unbreakable things, we cling tightly to enforcing rules, following routines and repeating behaviors, activities,

and habits (rather than “task switching”); trouble “seeing someone else’s side” can be a problem of the brain’s impaired EF, not flawed character; diminished “theory of mind” or “lack of empathy” may be reduced cognitive flexibility and a legitimate struggle not to be willing, but to be able, to consider multiple points of view.

Thanks to EF, typical minds can readily set and achieve goals; delegate tasks; plan effectively; organize ideas, things, and spaces clearly; initiate tasks; monitor their emotional react...

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.

If typical minds are cars, making sharp turns, switching lanes, and cruising easily around traffic circles, then in many ways, at many times, ours are train brains. Powerful, focused forces that require tremendous effort to slow or redirect. When we are truly engaged in a topic, we do become utterly oblivious to the passage of time.

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! There is no time for details or structure. No interest in tedium. We’ll lose the momentum of our creativity if we get bogged down in implementing the imagination. It’s a fun place to be—if someone else is there to organize and systemize those wonderful ideas into life.

EF speaks to how well we manage the unexpected, the unfamiliar, and the unstructured. For those of us on the spectrum, “how well” … is often not very well.

No matter how wonderful or world-changing our ideas, to anyone looking, we seem like too intelligent, rude, self-absorbed, irresponsible people making excuses. And we will be treated as such.

That we cannot seem to do what we actually cannot do without informed, intentional supports. Lacking those, we often suffer from chronic depression and terrible anxiety. We try to force control over trivial things, growing ever more rigid in our thinking and brittle in our emotions.

Generally, we understand things, people, ideas—life—using inductive reasoning. We go from the bottom-up, starting with specific, concrete experiences, facts, and examples. Then, we spot trends, notice patterns, and discover bigger concepts that link it all together. All in all, having different methods of thinking is a good thing.

For spectrum minds, too much choice will halt you in your steps. Waypoints and destinations are the only indications of trajectory. The only dependable kind of feedback. The only way we have of knowing we’re making progress toward almost anything.

Instead, the ventral striatum (reward center) in autistic brains lit up when engaging in repetitive behaviors or gathering data on our “restricted” (a.k.a. special) interests. Plainly put, we rely on more quantifiable barometers than smiles to assess achievement and social approval: grades, points, degrees, titles, Instagram followers … and, as I’ll come to explain, less innocuous, body-focused standards, too.

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.

And so, in trying to keep up appearances, we feel perpetually anxious that we’ll make a mistake and lose whatever it is about ourselves that has finally garnered approval.

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.

The terrifying truth is that certain deadly, dangerous, disfiguring specters haunt girls on the spectrum more than any other population: eating disorders, cutting, burning, hair pulling (trichotillomania), skin picking (dermatillomania). It makes sense if you just think about it; genetically, we are prime candidates. We’re socially programmed to judge ourselves harshly. We’re neurologically wired to be rigid and exacting. To be perfectionists with obsessive and depressive tendencies. To have minds that get stuck on something and replay the idea endlessly all day and night. And we don’t like to feel out of control. We are, literally, the textbook illustration of the kind of girl/woman most vulnerable to self-destructive chemical and process addictions.

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.

Despite education or intelligence, despite unmatched levels of creativity, of soul-piercing sincerity, or analytical genius, women on the spectrum are the most likely to find themselves under- or unemployed, financially dependent, and without guidance. Looking back at my own faltering steps and seeing the pattern repeat in so many young women, I’ve called these the “wandering years.” A time when opportunities are missed, decisions become dangerous, and hope is lost … not because of a lack of talent or passion or effort, but because of social gaffes, communication gaps, self-doubt, and plain old mind-blindness.

Typically spectrum-minded, it was all or nothing. Black or white. Every seed of doubt ever planted in my heart that I was a fraud and a pretender proved true, as I’d always known it would.

It’s the same out-of-body, dissociative effect I’ve felt from picking at what are, I know, my own distorted perceptions of imagined imperfections in my skin. The initial physical pain

is a distraction—a repetitive action with sensory-seeking intensity sufficient to override the emotional. Then the brain’s pain response system kicks in—reacting to emotional or physical injury in the same way: a rush of endorphins, endogenous opioids, to deaden the hurt and induce a flood of calm. It’s a self-sabotaging relief that epidemic numbers of autistic women seek through substance use, high-risk, repetitive processes (gambling, gaming, sex or porn addictions), by pulling their hair, cutting the skin, or, very often, an amalgamation of more than one. Hours lost to hyperfocus in a particular private place, using particular tools, often in response to a particular theme—generally, for me, transitions when I’m filled with the dread of being insufficient, inadequate, uncertain as to how to move forward. And I’m left … wounded. Embarrassed. With more problems than when I began.

Cutting. Starving. Compulsive exercising. Drinking. Drugs. Hair pulling. Skin picking. These are not attention-grabbing strategies, or else why would we, who employ them, work so very hard to keep our behaviors secret? They are evidence of poor coping skills. Of terrible anxiety. Of invalidation and loneliness—and shame. Manifestations of anxiety and cognitive rigidity to the point of epidemic levels. Why? It’s all about relief. About trying to esca...

Many things that seem perfectly clear to typical girls couldn’t be more confusing for us. Friendships. Fashion. Flirting. We don’t just “pick those things up” without effort. Instead, we study scripts—stage directions, novels, movies, social media posts—and mimic better than any neurotypical I’ve ever seen. We anxiously overthink some things and impulsively underthink others. What we almost never do, though, is to listen to our instincts (let alone trust them). That is, with one exception: when life comes at you really, really fast, it doesn’t always leave time to think. Or overthink. There’s just time to do.