A few months ago, I had the opportunity to talk in person with someone I’m close to about adult-diagnosis ADHD and autism. Working with a therapist, she went through the official processes for diagnosis, first of ADHD, and then of autism. In her 30s, she now understands things about herself and her experiences in profoundly new ways.
And I, in my 50s, asked her question after question, recognizing myself in some of what she said, eventually understanding she had already suspected I might be autistic.
“So,” I said, “everybody doesn’t rehearse conversations in their head beforehand? Especially with strangers?”
She smiled and shook her head.
“But I don’t stim.”
She looked at my moving toes.
“My doctor said that was neurological. I haven’t always done it.” But then I remembered how I’d always moved my knee side to side when I was bored or tired from shutting out the overwhelming world, how the restlessness built and built until I had to move.
“It’s probably both neurological and stimming,” she said.
“I read a book about Highly Sensitive People. I thought I was one of those. It wasn’t about emotional sensitivity, but about sensitivity to stimuli and a need for more time to process it.”
She raised her eyebrows.
“Oh,” I said.
Some people are concerned about rising rates of autism, worried there’s some environmental factor. Others argue that there aren’t more people with autism, just more people diagnosed with it. Definitions change; we no longer use the term “Asperger’s Syndrome” but instead speak of the spectrum. And girls and women are much harder to diagnose for a range of reasons, including the time spent on social skills for girls vs for boys.
So it’s a period of flux for autism, and folks like me, who never had autism support and did well enough to get through college and grad school and 25+ years of college teaching, find ourselves wondering. I doubt I’ll go through an official diagnosis process, because I would not take advantage of offered support from professionals. And I definitely would not want to appropriate the experience of people whose autism requires support. But the more I learn about symptoms and common struggles, the more profoundly this idea helps me.
I thought I was both deficient and lazy. There was a time when pop psychology was obsessed with “helping” introverts to become extroverts, because extroversion was a valued trait in the job market. I knew I couldn’t become that extrovert, and the thought of trying made me angry and frustrated. I thought I hated cities because I grew up in the country, and could never understand small town people desperate to escape to New York. I thought my sensitivity towards animal suffering meant I had experiences I’d never addressed, yet no type of therapy ever significantly helped me.
Once, when I was sobbing about two dogs that had been dumped at our local dog park, two dogs who chased our cats so we couldn’t foster them, my therapist-of-the-season asked, “Why is it you who has to save them?” I didn’t know how to explain that I felt their fear in my own body, my muscles aching like I had the flu. That I knew how they felt in cages at the city shelter, in the noise and the strangeness, because I was there, too.
That’s the symptom I only recently discovered, the one that made me understand the value of this word, autism, to describe me. Hyper-empathy, it’s called, and it contradicts the common stereotype that autistic people don’t feel empathy. Some autistic people are unable to express empathy, or do so clumsily, or their expressions and tones don’t convey it. But for some, the inability to separate yourself from the suffering person or animal (for me, it’s animals, though young children too), to process the experience and move on, is the problem. It’s still hell, but knowing it’s a symptom is helpful. Instead of suffering and beating up on myself for suffering, I just have the original emotion.
My husband, luckily, has been very supportive as I explore this possible explanation for (at least some of) the way I am. And he’s been a support for me without either of us knowing that he’s doing it. He hates it, because he was taught that a lady goes first, but he’ll enter a restaurant or shop ahead of me if I insist on it—and I feel intensely relieved when he does. He’ll guide us through crowds, me clinging to the back of his shirt. When a phone call has to be made about bills or vet appointments or anything else customer-service related, he calls unless I absolutely have to. He buys unscented laundry soap, puts on the subtitles so we don’t need the tv volume too loud, and understands that when I say I don’t care about cars, I don’t mean I’m indifferent to people, like him, who are interested in cars.
According to the few notes my mom managed to scribble in my baby book while mothering my three older siblings, I was a quiet child and adored animals. I used to joke that I watched what my siblings did that got them in trouble and consciously decided not to do those things. Now I suspect I watched them to decipher how best to please other people, that I began learning the mysterious arts of social interaction from such a young age that I would never have understood the effort of that self-education.
I’m still learning about myself, still unwilling to claim the label of autism if it could in any way hurt others. We are all, actually, weird and quirky, different by both nature and nurture. But it helps me to think that I’m not averse to traffic, crowds, most news, cocktail parties, CBT, and more because I’m weak, but for neurological reasons over which I seem to have less and less control as I get older. I’m not willfully unable to enjoy what my friends enjoy; I’m just made this way.
But I still love you, my friends and family, poets and artists, strangers and acquaintances trying to get through this difficult and beautiful life with as much hope as possible. I just need a moment to figure out how to show it.
Categories: Health, Katie's Voice


