Women and autism
When I first told friends I was formally diagnosed with autism, some of them scoffed and called it nonsense. They said I was fine, that I smile, laugh, make eye contact, socialize. I’m a mother of three sons; I’ve published three books, and I speak publicly at conferences and schools across the country.
In short, I don’t fit the mold. I can understand where my friends’ reactions came from. Many, when they think about autism, picture a boy who has trouble making eye contact and is obsessed with gaming. But, as the age-old saying goes: If you’ve met one person with autism, you’ve met one person with autism. When I was little, I felt like I watched the world from inside a glass box. What happened outside it was a bit baffling. It never occurred to me that I had any sort of interactive role to play. I was just a spectator, trying to make sense of all the input. School, especially, felt this way to me. By the age of ten or eleven, though, things were coming into focus. I observed more carefully. I studied other kids, grownups, people on TV. I mimicked their body language, their ways of interrelating, their laughter. For the most part, that mimicry was unconscious. Other times, it was deliberate. For example, a certain teacher had this bright, beaming way of saying “Hi!” that just made me feel good inside. I remember deliberately deciding to say “Hi!” to everyone I knew, in that same happy way. Sometimes, I’d get things wrong and be taunted or bullied – even by “friends,” which was tragic and bewildering. I desperately wanted the world to be a just, organized, clear, golden-rule-following sort of place. Of course, I learned it wasn’t.
Eventually, the glass in my box grew thinner.
Eventually, the glass in my box grew thinner. I grew up, got a job, got married, and had three wonderful sons, one of whom is autistic. It took me until my kids were practically full grown, in order for me to get it -- to look back on my life with a clearer lens, and realize that it might not be just my son who was bringing the joys and challenges of autism into our family. I started to figure it out while I was writing The Someday Birds, my first novel. It’s about an autistic boy on a long journey in search of his father, and how he learns to feel more at ease in the world. At first, I thought I was writing as a heart-gift for my sons. But I soon realized that the voice emerging from the pages sounded an awful lot like that little girl from long ago. So-called “higher-functioning” autistic women remain hidden, undiagnosed, because we fly under the radar. We’re too good at blending in, masking, camouflaging. As one autistic woman put it recently: “I can do anything you can do, but it feels like I’m doing it with an 80 pound backpack on.” In other words: We don’t fit stereotypes. We can be champion chameleons. But life as a chameleon can be exhausting. I lose at least a full workday, after a public event, to “detox/destress time.” I jump with panic at any loud noise -- I use noise-canceling headphones A LOT. When my phone rings, I freak out -- then take a deep breath, and answer so calmly, you’d never know. Trips to the store often end with me heading home with the cart only half full, because I’ve reached my sensory limit of loud music and jostling aisles. That’s just a few of the surface challenges. But I love connecting out in the world. So I go, and do. I try to find the right balance, to learn when to push, and when to recoup. It’s not always easy. The only one who wasn’t surprised by my adult diagnosis was my mother. She took my hand and said, “I always suspected it was something like that.” My mom is an extremely sensitive introvert who also had issues as a child. Between you and me, I suspect she also might be somewhere on the spectrum. But here’s the thing: It’s such a wide spectrum. Actually, I prefer to think of it as a constellation. Autism takes as many different forms as the people it affects.
But here’s the thing: It’s such a wide spectrum. Actually, I prefer to think of it as a constellation. Autism takes as many different forms as the people it affects.
Autism is a human condition, emphasis on the word human. I hope we can learn to expand our definitions of all the various, beautiful, different and/or challenging ways that neurologically different brains work in this world. To accept them, and make room for them all.
Sally J. Pla is an author and advocate for neurodiversity and autism acceptance. Her critically-acclaimed middle grade novels The Someday Birds and Stanley Will Probably Be Fine, and picture book Bejni, The Bad Day And Me, all feature 'differently brained' kids. You can find out more about Sally on her website, or connect with her on Twitter.