I’ve been building my spectrummy book collection, looking for some in-depth self-portraits from actually autistic people. The first two are both by autistic moms who were diagnosed as adults. I was worried about overlap at first, but as I devoured both of these books within a week, their experiences and styles support the adage: If you’ve met one autistic…you’ve met one autistic.
Nerdy, Shy, and Socially Inappropriate: A User Guide to an Asperger Life, by Cynthia Kim, is a personal take. She of course makes things relatable to the reader, but she focuses on very close-to-home life. Diagnosed in her forties, Kim is married to and mother to neurotypicals, so she’s the lone autistic in the home. I personally identify with this, having to learn that within my home, with someone I share my life with, that there are some fundamental differences that can simply never be overcome–“overcome” seems the wrong word, but it’s beyond a cultural difference, it’s at the core, it’s neurological.
Kim is open about some difficult topics, including her struggle understanding empathy versus sympathy, perspective taking, alexithymia, that sort of thing. She does offer advice where she can, strategies that worked and didn’t work, like how much effort to put into being social for the sake of those you share your life with. You may want to push yourself and camouflage and give everything you have so that your partner or child has the fullest, most “normal” life, but that is harmful to ourselves and at some point you just have to be honest about what you can and can’t do.
Throughout the book, she has breakouts and bulleted lists to dive deeper into some traits and behaviors involved in the diagnosis process, which I found super helpful. When you’re going through questionnaires and see a question like “Do you experience flat or blunted affect?” it can be tough to answer. She breaks down into easily identifiable aspects so that you can better answer the questions and ultimately make better sense of yourself.
Even as a childfree person, I found her interactions with her daughter useful, just as a relationship. And also reinforcement in my belief that I would maybe not be fit for motherhood. Her struggles and sensitivities were so relatable that I don’t think I would have handled the responsibility of a whole human as well as she did. As someone just going through the discovery/diagnosis process, I found her overall arc of funhouse-mirror-version-of-a-person to acceptance of an actual person helpful. It’s not at all inspiration porn, just an honest dissection of self.
Autism in Heels: The Untold Story of a Female Life on the Spectrum, by Jennifer Cook O’Toole, was a tough buy for me. The cover image of a woman in a dress and red heels, the title…I don’t identify with that at all. So I was very surprised by how much I enjoyed it and how useful the book was for me. Honestly, much of her life story did not align with mine, but I still saw benefit in how autism affected her choices in life, her insecurities, and the ways she uses her energy and talent.
Cook O’Toole is an autistic autism author, and apparently a pretty important one. If I had autistic children, I’m sure I would have been familiar with her as the author of the Asperkids series. She is on the speaker circuit, sharing her story, fleshed out by years of research. Her own autism was discovered during the process of diagnosing her own kids, at 34. The difference we see in how her sons and daughter were diagnosed, by the way, is key. She writes this book with a strong focus on the girl/woman experience.
Again, that made me hesitant to engage with her story, as I wasn’t really raised with gender expectations the way many are. Society placed more on me than I’d like to admit, but as I’ve covered elsewhere, I was encouraged to be whatever I felt comfortable with. As her stories exposed, the way others see you dictates many of the challenges you’re going to have to face, regardless of how you see yourself. Cook O’Toole doesn’t at all say her female experience or expression is the right one, but rather that it’s hers–she tells of an exchange between herself and Temple Grandin, stating that whether you rock the heels or a bolo tie, your expression of self and gender is wholly personal and valid. Her red heels do become a symbol, a middle finger to the sexism she experiences as a professional. This confidence and power was built after a whole lot of trauma, as she details in a few chapters that come with content warnings; she experienced some serious bullying, gaslighting, and a hardcore emotionally and physically abusive relationship.
One way I did identify with her is as a performer. It’s something I need to explore more, but I’ve noticed a lot of autism stories involve actual theatrical performance. It’s masking boot camp, diving into other personas, studying human nature and behavior and expression. And it’s a way to excel at something acceptable to others, to earn praise, and make space for eccentricities.
Cook O’Toole also includes some solid science–she’s been doing this a while and distilling autism research is kind of her thing — so these personal stories are supported by the nuts and bolts (or wiring) beneath them. She has a pretty wide net of a “Chick-List Checklist” of traits and behaviors for the reader who is maybe wondering if they’re on the spectrum. I saw myself in so many of her examples. So many.
I’ll leave you with this quote, kind of a lightbulb moment for me. While we share certain struggles, the playing field is clearly not level, when it comes to what society is willing to accept or assist us with. As someone who has had huge hits and misses in academic and professional life, this allows me to put my experience into a larger context–and while that doesn’t change my day-to-day, I hope to hold onto it and work to level that playing field for future generations.
Men who struggle with deadlines or disorganization more frequently find the socially acceptable support of executive assistants, wives, or mothers…they are “absent-minded professors,” while there is no word for emotional, discombobulated women. At least, no kind or endearing word.
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