A beautiful spectrum.
At the beginning of 2021, our son Riley was diagnosed with autism spectrum disorder.
Today, at almost 40 years old, I was, too.
Though the symptoms have been there as long as I can remember, way back into early childhood, I didn’t become aware of them as indicators of something deeper going on until we went through the diagnostic process with our son. (When I got married, I quickly discovered that I had quite a few quirks, it seemed—like leaving cabinet doors and drawers cracked because I didn’t like the noise they made when they shut, or how the towels all had to be folded and put away a certain way or I’d need to refold them—but the line of thinking didn’t really go any further than that.) But as we progressed in his assessment, lightbulbs kept going off in my head for my own life experiences. It was as if all my life, I’d been fumbling through the dark and someone finally hit the light switch. My entire life began to make sense as I viewed it in retrospect with new eyes.
How I’d never felt like I fit in—anywhere. I perpetually felt like a square peg trying to cram myself into a round hole. (And it didn’t help that, as I was growing up, having red hair, fair skin, glasses, and freckles were the actual definition of a freak. I really stuck out.)
I have never been very good at reading body language or reading between the lines in social interactions. I have a very black-and-white way of thinking, fumbling through gray areas like walking in quicksand. I use humor as a buffer for my social anxiety but rarely know the line between appropriate and inappropriate jokes. I have been blessed with some truly deep and fulfilling friendships, but in general, relationships are both challenging and exhausting for me, my mind constantly at work trying to interpret data input that seems to be written in another language. It wasn’t until we sifted through information about ASD with our son that I realized what I’d done my whole life to survive social situations was called masking. I just thought I was a bit of a copycat. (Hey, imitation is the sincerest form of flattery, right?)
And then there are the host of sensory issues: lights, sounds, textures, bright colors, smells. I have always been ultra sensitive to them, to the point of almost physical pain. Perfumes and fragrances—or the person smoking in their car two cars over at a stoplight—give me an instant massive headache. I’m weird about food textures. Which is difficult when you grow up in a home where “picky eating” isn’t an option, so you stifle gags on soft or slimy foods at the dinner table. Or when you are a young mom listening to your toddlers squeal and laugh over loud noises from their battery-operated toys and wish you could tear your ears off.
And that’s just scratching the surface. I’ve spent most of my life feeling extraordinarily misunderstood. Why can’t I just get my act together? Why do I have so much trouble being in a group setting? Why can’t I follow through on this or that goal? Why can’t I just act normal, for crying out loud?!
But today, sitting in that practitioner’s office listening to my diagnosis, it felt as if the 2-ton weight of shame and guilt and mysterious otherness I’d carried my whole life was lifted off my shoulders. There was a reason why I struggle so much—an actual deficit that I have to work through to function. Oddly enough, it was such a relief.
I’m sharing this only because I know I’m not alone. It’s estimated that about 80 percent of females with autism are still undiagnosed by the age of 18. Boys are diagnosed at a much higher rate—about four times as much—in childhood because autism presents differently in males versus females. Because females are naturally inclined to fit in socially, we often mask some of the tell-tale signs that would afford us a diagnosis. So we just struggle in silence, masking our challenges, imitating our social cues from others just to survive our social circles.
What makes it more difficult is that autism is a blanket word for a spectrum of behaviors and challenges. As the saying goes, if you’ve met one person with autism…well then, you’ve met one person with autism. It presents differently in each person, and with those of us who are high functioning or even gifted intellectually, what are often symptoms of autism are seen as byproducts of a high IQ or creative ability.
I don’t have the language to express how validating, how reassuring, it is to be able to put a name to what I’ve felt about myself for a while. I grew up in an environment where naming a disorder or sickness or ailment was to give it power over you. Sort of like, you don’t want to put it out there into the universe or label yourself by anything negative because Jesus overcame that thing. And it was seen as victimization or attention-seeking to bring up something that was wrong with you, like you were wearing it as a badge of honor or something.
But that line of thinking assumes that having autism is a bad thing. And if I were to say that it is, I would be saying that there’s something wrong with Riley, too. And we just don’t see it that way. Riley is brilliant and unique, and we’ve loved discovering how his mind works. It’s fascinating and just makes us love him even more than we thought possible. No, there is nothing wrong with Riley, so I can’t believe that about myself, either.
Autism spectrum disorder isn’t a crutch or an excuse, or even an identity. It’s simply, and thankfully, an explanation. It’s a way to understand how my brain is wired, and how I interpret the world around me through neurodivergence. It’s also a starting point. The first year after Riley’s diagnosis was spent engaging in multiple therapies to assist him in developing tools to successfully navigate his world, tools that he can utilize to combat social anxiety and mental and emotional overwhelm. I know I can benefit from some of those tools, too.
There are also strengths to be found in neurodivergence. I’m a sensitive person, but that means I pick up on other people’s struggles or moods and can sense when they need encouragement. I’m honest (okay, maybe I could work on my filters a little more, but you can at least count on me to always tell the truth). And I’m highly strategic; I see and perceive things that others many not have thought of, which can be helpful in group settings or strategic work meetings.
Knowing I have autism now is also helpful in continuing to offer Riley the care he needs; I understand his world better than anyone and can help steer him into healthy behavioral patterns. When I was growing up, there was very little acknowledgement or understanding of ASD aside from those who experienced severe handicaps. But with all the information we have and are still seeking out about neurodivergence, and all of the tools that are now available, I can be a better advocate not just for our son, but also for myself.
And more than that, I can know that I’m doing my best, and that’s simply enough.
