Diagnosed With Autism at 43

The relief of finally knowing and the emotions behind it all.

I was Today Year’s Old when I was diagnosed with autism.

Since I unknowingly passed a chromosome disorder onto my son, who was diagnosed with it first, I’ve become a Ph.D. Ninja Master in all things autism and discovered how much I associated with the common traits.

Still, I wanted the formal diagnosis. Partially because I wanted to talk to my son about this experience as he gets older. Partially because I wanted to fill the circle between autism and the chromosome disorder. And, partially because I wanted an explanation for why I always felt different from others my whole life.

While it’s a relief to finally know and have a reason for everything, my brain is reeling. I have flashbacks to moments in my life that make sense now.

Decades ago, a friend of mine called me to say her beloved cat had died. I knew that cat well. I knew my friend very well. And yet, my response wasn’t that of consolation and “are you okay”.

I immediately jumped into the logistics of how to bury a dead pet when the ground is frozen solid in winter. Flip phones weren’t equipped for impromptu Google searches back then.

I still feel like an asshole about that. To this day, my default reaction to incidents is that of logic before emotion.

Maybe I’m not an asshole. Maybe it was autism.

When I drive to work (when I used to, pre-pandemic), I take side streets. It adds more time to my commute compared to taking the highway. But California highways are unpredictable, one car accident and your drive time goes from 15 minutes to 2 hours. Despite the endless series of red lights, I take comfort in the predictability.

My career involves knowing the tiniest of details. The things that people gloss over. As a technical writer, I need to know how something works step-by-step in a methodical way. Someone can wave their hands and say “yeah, just log in and set it up”. I think in terms of “Turn on computer by pressing the (icon) key. The login screen appears (screenshot of the login screen). Enter the Windows username in the Username field. Enter the corresponding Password in the Password field. Click Submit.”

Maybe I’m not boring and predictable. Maybe it was autism.

When I transitioned to giving my children showers, my right forearm got wet when soaping them up. Before I could subsequently wash their hair, I had to stop and dry off my arm. Despite that my arm was going to get wet again in ten seconds. It didn’t matter. It was like spiders crawling all over me; I need them off, stat.

Bounce houses and theme parks are an internal nightmare. Do I go and make the best of the experience? Absolutely. I wouldn’t decline an offer to visit Disneyland. There is a lot of mental prep beforehand to make sure I’m ready to go and have a good time. The noises and visuals become overwhelming. It feels like a kettle on a stove inside of me. Eventually, the water boils and it becomes an internal battle to stop myself from melting down. All I can think of is how I need to get out to take the screaming kettle off the stove. It consumes me. As an adult, I’ve learned how to suck it up but my hands are in my pocket, clenched. Once I can finally go somewhere quiet, I need to be alone to reset.

Maybe I’m not a delicate princess. Maybe it was autism.

I follow online two women in their early twenties with autism. There is a generational difference; there was no such thing as autism when I was a child and the test that diagnosed my chromosome disorder was so new a decade ago that the doctor was floored my insurance covered it. Autism in women manifests itself in different ways and most of the ways that I learned about it (for my son) have been about young boys and their traits.

Getting myself diagnosed as an adult was a challenge. What’s the point in diagnosing adults? There’s no behavioral therapy for my age. If I couldn’t eat foods because of their texture, I obviously found ways to work around them and survive. Neurologists only diagnosed children. My first informal assessment came from my son’s neurologist when I told him some of my behaviors.

One of the two women I follow online referenced a particular institute in England working towards creating tests for adults with autism. Would my insurance cover their tests? Absolutely not. But it was worth paying out of pocket to answer their myriad of questions and take their diagnostics.

I needed to know why I’ve felt different my whole life. Everyone probably thinks that, which makes sense since we’re the main stars of our own movies. But this is feeling different in any environment. I’m never fully at ease; I’m an imposter waiting for someone to call me out. It’s why I’m adept at blending into any scenario no matter where I am; I’ve learned how to scan the personalities and behaviors of others in a room to take on the correct persona. My anxiety, for one of many reasons, is sky-high as I wear a mask in the hope no one notices.

That’s why I struggled with the breakup over an ex from last year. Jon is one of the few with whom I’ve never worn a mask.

I read the email confirming the autism results this morning. The various diagnostics displayed the scores so it wasn’t a shock by the time I received the doctor’s message.

I climb out of bed and try to put the blankets on nicely. I’ve never understood why making the bed is so important. It’s only going to get messed up 16 hours later; it’s illogical to me to fix something aesthetic that will get ruined again day after day. But as part of my quest for self-improvement, this is the kind of shit that I try to do now because “they” say it’s important.

In the shower, my mind races to my previous romantic relationships. The things said to me in arguments. The things that could have been avoided. All the times that I was honestly clueless that what I was saying or the “tone” in my voice was the cause of a fight. My lack of understanding why people behaved the way they did, like when Jon chose to mentally clock out when we agreed we should end things instead of telling me how he really felt or following through with what we said we would do. How my quasi-ex-husband constantly flipped his lid because of the way I said something when all I could think was, “but what did I say that was wrong?”

Suddenly, I melt down crying. The worst part of seeming like an emotionless robot is that inside, I believe I feel things thousands of times deeper. Being accused of seeming uncaring is awful when inside, you know if you showed your actual reaction they’d put you in a psych ward because the depth of feeling is a level of intensity that can’t be put into words. My heart is like the highschool Egg Baby project that I carry everywhere while people pummel into me thinking I’m as tough as a linebacker.

While still showering, I tell myself that I’m allowed to cry in the shower but I can’t cry once the water is turned off.

This is how I function: I create rules dictating when I’m allowed to demonstrate emotions because otherwise, I’d be an unpredictable basket case when things go sour.

So…now what do I do with this information?

I think about how the younger generation can easily tell someone they’re dating that they have autism. Heck, they could probably put it in their dating profiles.

Not something I’m quick to tell guys in my age demographic lest they think I’m Rain Man counting toothpicks off the floor (I’d be rich in Vegas if that were the case). Heck, I can’t even tell my parents this news. My mother will instruct me not to tell my extended family because you know…we don’t need them gossiping about any imperfections. I’m already the black sheep out of over forty first cousins.

Because I’m a “rip the bandaid off” kind of person, I do what feels natural: I put a blast on Facebook telling everyone in one quick, efficient post that I’m officially autistic. It’s also how I’d like to post about separating from my husband but since there another human involved, I can’t do that.

So far, except one friend who says that I show no symptoms of autism (I’ve had to flex my behaviors daily my whole life. I’m exhausted. If you don’t see symptoms, that’s because I’m an Academy Award-winning actress), my friends are absolute rock stars. I assumed they’d ask me questions, like “why the eff would you do that” but instead, they expressed support for me doing this as another way to help my son understand his world.

A former coworker wrote, “I never sensed that you were struggling with anything. You are one of the most capable and so socially skilled person I know.”

Pretending is my superpower.

My goal this past year of changes has been to live a more authentic life. That means getting out of a marriage that was harming me despite the impact that it will cause the kids. I’ve worked on creating goals for myself as well as finding ways to challenge both my beliefs and behaviors.

Finally finding out a reason for feeling different is another component of that authentic life.

Instead of fighting against nature to be who everyone else wants, I’m working on being who I’m supposed to be.