The Invisible Life of the Unidentified Autistic Girl

Autism in Heels by Jennifer Cook O’Toole Book Review

Photo by Author

This year I want to read more books about the autistic experience. I’ve only read a handful so far, but thanks to Hoopla, Libby, and my local library I can actually check some more books off my masterlist of recommendations.

For January, I read Autism in Heels. It was one of the first books I sought to buy and read, but despite Indigo saying they had a copy in stock, it was not where it was supposed to be in store and I had to leave without it. The upside is, I am glad I didn’t find the book that day when I was so newly diagnosed. I think I read Autism in Heels at just the right time in my life when I could process the contents already equipped with 4(ish) years of an understanding of myself and autism.

So, what’s this book actually about…?

Summary

Autism in Heels, an intimate memoir, reveals the woman inside one of autism’s most prominent figures, Jennifer O’Toole. At the age of thirty-five, Jennifer was diagnosed with Asperger’s syndrome, and for the first time in her life, things made sense. Now, Jennifer exposes the constant struggle between a carefully crafted persona and authentic existence, editing the autism script with wit, candor, passion, and power. Her journey is one of reverse self-discovery not only as an Aspie but–more importantly–as a thoroughly modern woman.

Whether it’s bad perms or body image, sexuality or self-esteem, Jennifer’s is as much a human journey as one on the spectrum. Because autism “looks a bit different in pink,” most girls and women who fit the profile are not identified, facing years of avoidable anxiety, eating disorders, volatile relationships, self-harm, and stunted independence. Jennifer has been there, too. Autism in Heels takes that message to the mainstream. (The StoryGraph)

Content Warnings

While the book contains warnings before the specific chapters (Ch. 8 and 9) that require them, please be aware that this book does contain depictions of eating disorders and abuse. You can skip these chapters if you choose to read the book. See the full list of content warnings on The Storygraph.

You’ve Met One Autistic Person

My initial thought while reading this was, “This is a memoir of one autistic person.” While I definitely related to some aspects of O’Toole’s experience, I did not resonate with it all. As the saying goes, “If you’ve met one autistic person, you’ve met one autistic person.” Autism is considered a spectrum disorder and where each autistic person’s traits fall on that spectrum determines only that they are autistic. We are as unique as the rest of the world’s population, we just happen to have some things in common.

For example, a propensity to avoid eye contact. In some cases, however, this manifests as making too much eye contact or finding loopholes by staring at a person’s eyebrows or the space between their eyes. Western society, generally, values eye contact which is why it’s so noticeable when it comes to not making eye contact.

Masking and Gender Norms

Due to this societal expectation, autistics will sometimes do their best to mimic these expectations and neurotypical standards to try to fit in. This is called masking and/or camouflaging. It is much more common among autistic girls and women. I believe this is, at least partially, due to the gender norms embedded in society. Girls face more pressure to fit in with their peers, obey authority figures, and demonstrate emotional maturity at a younger age than boys.

An article from Planned Parenthood says, “Girls and women are generally expected to dress in typically feminine ways and be polite, accommodating, and nurturing. [Boys and] men are generally expected to be strong, aggressive, and bold.”

Asking a million questions, avoiding eye contact, having an innate preference for affective/emotional empathy over cognitive empathy, and generally being uncomfortable comforting others and being touched…well, to put it nicely being an autistic girl is challenging.

I remember as early as 1st grade (about 5–6 years old) already trying to conform to both spoken and unspoken social rules. While O’Toole masked her way through social challenges by being extroverted, I became the “shy” girl. Out of fear of saying the wrong thing I chose not to say anything at all. I had friends if only for the fact that I attended the same small school from kindergarten to eighth grade (and when I say small, I mean small. We were a graduating class of 16, about half of which were girls).

Academic Excellence

High school posed a different challenge altogether. It was louder, there were more students and more crowds, and I was shuffling from classroom to classroom all day. It was a routine, but it was a stress-filled routine. I was constantly overstimulated which only contributed further to my quiet nature. While O’Toole continued to put herself out there taking theatre and drama classes and becoming an actor, I (mostly) enjoyed my solitude. Friendships meant expending more energy I already didn’t have so I just didn’t have any.

Instead, I focused on school: the projects, the tests, the homework, the deadlines. I wasn’t a straight-A student, but I was pretty damn close. I loved math the most. I liked solving problems, finding satisfying answers, I liked the reliability of facts. There was one specific equation to use to find one specific answer. I couldn’t go wrong.

Screenshot from The StoryGraph

The Friendships I Did Have

The key thing I learned from Autism in Heels that I didn’t know before was that it’s common for autistic’s to form relationships with either older or younger individuals rather than direct peers. The social hierarchy is clearer. If O’Toole interacted with people younger than her she was automatically the one “in charge,” if she interacted with anyone older she became “the apprentice.” She could listen and learn from these people and/or easily talk their ears off because it’s more acceptable for an adult to let a child go off on a tangent and not expect any reciprocal conversation.

I also experienced this. I more readily wanted to hang out with my peer’s parents than my actual peers. People my age were boring, interested in things I wasn’t, and more often than not treated me as the younger, little-er friend because I’m quite petite. The reality was I had lots to express and thoughts I wanted to share, often about deeper topics than my peers cared for, but their parents or other adults within my parent’s social circle would listen.

Eating Disorders and Abusive Relationships

O’Toole does not shy away from serious topics in this memoir as I mentioned at the beginning. She shares her struggles with eating disorders. She believes when evaluating girls for EDs they should also be checking for autistic traits as she sees that much of an overlap between the two.

Living in a world that was not made for you or how your brain works can lead to extreme countermeasures to find some semblance of order amongst the chaos. O’Toole expressed that her struggles were less about wanting to be thin and more about the meticulous spreadsheets she could keep, the calories she could track, and the control she could have over her body when everything else was out of control.

She also shares the abuse she suffered in relationships. Due to the need to try to fit in, please others, and not be our weird selves, some autistics are more prone to entering manipulative or abusive relationships without realizing it. Without a solid, foundational, sense of self, it’s easier as one gets older to enter into unhealthy relationships. O’Toole discusses the concept of a “diffuse sense of self.” Dr. Kristalyn Salters-Pedneault describes having a diffuse sense of self as “someone who changes who they are depending on their circumstances and what they think others want from them.” It’s common among autistic’s and abuse survivors.

I think, for me personally, I am more likely to see any abuse or manipulation for what it is because my mother (who was also likely autistic) provided me with a safe environment to (mostly) be myself. She always encouraged me and helped improve my confidence, and in turn, made sure I had a strong sense of self (though I recognize not everyone has that kind of support).

Final Thoughts

I’ll leave you with a few quotes from Autism in Heels that I found to be impactful.

“It is now our charge to explain that, regardless of how obvious our autism is to others, it is equally present to the person living it.”

“The experience of life from within any group has to be described by members of that group.”

“It’s our universal need, often hidden beneath anger, arrogance, disinterest, or distrust…a quiet, insistent plea to be loved exactly as we are.”