OARacle Newsletter

The following excerpt is shared with the author’s permission from the book What I Mean When I Say I’m Autistic, which is available to borrow from Libby through OAR’s Lending Library as an e-book and an audiobook. 

There are thousands of us—women who discovered our autism well into adulthood, well past many of the memories it explains. We’re too late in life to prevent a multitude of misunderstandings, yet too early in history to say, “I am autistic!” and trust that everyone will know what we mean. 

In spite of the wide variety across the autism spectrum, I didn’t resonate with many of its stereotypical traits. I began to think that I might be “half autistic,” because:

• I didn’t avoid eye contact or lack expression in my face or voice. 
• I didn’t have narrow interests, also known as special interests. 
• I didn’t move in unusual ways, also known as stimming.

Everything changed when I began to read about autistic women and girls. Many of their experiences mirrored mine perfectly—especially in their expressions, interests, and movements.

Yes, I can make eye contact, and I can adjust my face and voice to reflect the emotions I’m feeling. But it all takes concentration, and sometimes I get it wrong—for example, making more eye contact than my listener finds comfortable. “Masking” is a word for the performative effort required to get it right, which makes it tiring for me to socialize. External pressure to mask can come in the form of direct advice or indirect scorn, which are more often targeted at little girls than at little boys who behave the same way.

At first glance, my interests seem to cover a wide range of topics—art, literature, psychology, and music, to name a few. But after reading enough anecdotes from autistic women, I realized that everything I find deeply exciting falls into one of two specific categories. One is phenomenology, which involves noticing and analyzing how various experiences feel from the inside, such as whether you think in words or in pictures. The other category is aesthetic tropes, or the sensory elements that accompany a predictable story, such as the characters, setting, and soundtrack of a fairytale. It can be hard to recognize something as a special interest—a passion so strong that it counts as an autistic symptom—if it’s as hard to label as mine are, or if it’s a common interest that you approach with an uncommon passion.

If you met me in my early twenties, after I had some practice with masking and before I learned about autism, you might say that I moved in fairly typical ways. But that doesn’t mean it came naturally. As I learned about the repetitive movements that autistic people use to calm anxiety, I realized that I was often suppressing such movements to avoid looking weird. If I entered a place where it felt socially acceptable, like if music was playing, then I was moving more than anyone. I also learned that tiny movements, such as fidgeting with a pen, count as stimming because they provide sensory stimulation.

Little by little, I came to realize that I must be fully autistic. What a significant discovery! It explained nearly every problem I’d had in life, as well as many of my quirks and talents. It was like learning for the first time that I’m actually an elf or mermaid or fairy—moreover, that there’s nothing wrong with that, and that there are others like me.

It also opened the door to a whole new world of information, making my life so much easier. I found that I’m not alone in the challenges I face, and that other autistics have found solutions to many of those same challenges. I saw that by understanding my limits, I can find strategies to work within them—and by understanding my unique abilities, like precision and sensitivity, I can make the most of them. 

Annie Kotowicz is an autistic author and advocate who believes that neurodiversity is always worthy of celebration, without hiding from the many challenges it brings. After her autism diagnosis, she began writing online about autism and neurodiversity under the pen name of Neurobeautiful. This led to her first book, What I Mean When I Say I’m Autistic, as well as various articles. Annie’s writing continues to be driven by a deep interest in her own brain, other brains, and how to bridge the gap between them.