What I want you to know about Autism

(Reprinted from TayloredIntent.com. Originally published on 4.14.22. The words are all mine.)

What do I want you to know about autism? Since I am neuro-typical, I can only give you a mother’s perspective. So, last night, I asked my 15-year-old with autism what they want people to understand about autism. After a moment’s thought, they had two things to tell others.

First, in their typical blunt manner, C said, “Autism is a spectrum, it doesn’t always look like a little 6-year-old boy who can’t control himself.” 

I thought this was a great point. Our autism story isn’t typical. My kid, born in a female body, wasn’t diagnosed until last year, when they were 14. (For the purposes of this post, I’m using gender neutral pronouns and the letter C for their name.)  They’ve struggled with a number of things for years: reading was hard, paying attention in school was a disaster, building and maintaining relationships with “normal” peers was super challenging. The autism diagnosis was a sigh of relief for all of us. Finally, we had a name that encompassed a wide variety of things: social skills that were getting harder to manage in middle school, sensory issues that seemed to becoming more intense, and a hyper-fixation on a growing, rotating range of topics. Autism was not a negative diagnosis for us. It was an answer and in it, I found hope. 

It took years for me to start thinking about autism for my kid. To me, autism looked like one of two things: it was either the young boy whose autism made them unpredictable, a person with special needs, or it was the savant, again a boy, who could tell you everything you needed to know about his particular fascination. In fact, it was C who came to me and said, “Mom, I think I have autism.” In the next breath and typical fashion, “I’ve been doing some research.”

My sweet kid, from the moment they were born, was never typical. They were happy and silly and the third born. They could be laughing one minute and asleep on your lap the next. C was cuddly and tender one moment, but at the next moment, trying some stunt that would make a mom’s heart stutter with nerves. They could listen to me read to them for long hours or play a silly made up game all afternoon, but could never concentrate long enough to finish math problems. 

We got an ADHD diagnosis when C was quite young. (That’s another thing C would want you to know: often Autism is misdiagnosed in females as ADHD because Autism presents differently in girls and practitioners don’t think females have autism.) And in that moment, an ADHD diagnosis was a tool—it gave our family a framework for understanding that our kid’s brain worked differently. We could accommodate their learning and home life to best suit their needs. C is smart, funny, talented, creative, and silly. Their diagnosis forced me, as a mom, to reframe the negative lens through which this is seen. I wasn’t going to let them think their ADHD was an affliction. Instead, ADHD was their superpower—they saw the world differently than I did. It’s just that the world isn’t really made for kids whose brains aren’t like everyone else’s. 

Everything fell apart in Middle School. Well, Middle school and a pandemic and online learning and adolescence. It was the perfect storm of horrible-ness. It has been a rocky couple of years for my kid (and me) as we’ve discovered the autism diagnosis and struggled mightily with mental health. (One more thing C would say, because they think of things at random times unrelated to anything else, is that because autism is diagnosed so late in girls, most girls with autism struggle with depression, anxiety and a sense of “who am I?” and “why can’t I be like everyone else?” An earlier diagnosis could help relieve some of that angst.) 

This is the first time I’ve ever put this story down in words. It feels rather momentous to do so. Yet, when I tell people in my orbit that C has autism, some are surprised, but for most, who know us, it just rolls off their back. “Huh,” they say and move on to something else. Because for them, as well as us, it’s just a way to define the way my kid is, the way they move and think and interact with the world. And someday, this culture will understand what a gift a brain like that is. I am convinced that someday C is going to change the world. 

Oh, and C wants everyone to know something else about autism: “Mom, make sure you say that moms who have kids with autism aren’t superheroes. They’re just moms. Like you.” 

C makes me laugh so hard I can’t breathe. They will share their saved memes with me for 30 minutes just to get some parental attention and then later lock themselves in their room and not want to talk to anyone. They challenge the way I think and expand my view of what success looks like in the world and teach me a gazillion things I never thought I would have to know. 

While I wish the world was an easier place for my sweet one, I would never, in a million years, change this part of who they are. 

And that is what I want you to know about autism. 

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