You assume your life is going to be a mess until your mid-late twenties. And you think it’s pretty normal.
But then the hard work starts paying off, and you get lucky. You’ve got it all – the career, the relationship, the home, the pets.
And life still feels unbearable.
You have what you think is your dream job. But all the tiny stresses of the day pile up. Even though you’re grateful for your life, you still find that living drains you. And you wonder why.
You start to wonder what’s wrong with you. After all, you like your life. Goodness knows you’ve seen enough doctors and therapists. Depression. Anxiety. OCD. ADD. Maybe even PTSD. You’ve learned so many strategies for managing them all. Why aren’t you better yet? Are you just fucking broken?
A thought rolled through my head during yet another summer afternoon spent lying face-down in my room. Everything’s great, but I’m too exhausted to enjoy it.
Like a responsible search engine professional, I whipped out my phone and Googled burnout. Of course I landed on some vague, feel-good crap about self-care and meditation (spoiler: being in your mind doesn’t fix structural problems in living). How about, life is good but i still want to die “burnout”. Well, that’s more like it. A few searches later, I find something that sounds like me: A fresh blog post about autistic burnout.
Whether I was autistic or just empathetic to the experience, I knew one thing for sure: Trying this hard to act normal would kill me someday.
Falling down the autism research rabbit hole
Honestly, privilege in other areas of my life equipped me to start finding answers on my own:
- I had internet access from childhood, so I had years of experience finding information online from search engines (and social networks, when the search engine answers aren’t satisfying)
- I have a degree in sociology and went to grad school to become a licensed professional counselor
- I had access to a school counselor as a child, and saw my first outpatient therapist when I was 12, so talking to therapists wasn’t anything new
After I read that blog post about autistic burnout, I started wondering if it’s possible that I’m autistic and just didn’t know it.
I knew from my psychopathology class that “autism is more common in boys,” but that didn’t seem right to me. I got the sense that a) there was a bias at play and b) we don’t have a widespread understanding of what autism looks like in women.
I also remembered that autism is often diagnosed in toddlers. When I was a toddler, we lived in Honduras. If most American doctors only knew to evaluate for autism in small boys, it made sense to me that our doctors in the “developing world” wouldn’t think anything was out of the ordinary with a normally developing girl who talked at an early age. Any social deficits would have been easily explained away as cultural differences from being raised by my American mother. A healthy child is all any parent wants. Why would anyone go looking for so-called “problems?”
I fished out my heavily annotated copy of DSM-5 to start looking for more definitive answers. At first, the criteria didn’t seem to describe me. I can talk to people, as long as it’s not on the phone. I’m not into routines. I have friends!
But if the clinical profile is built around boys and men, and I am not male, shouldn’t I read about women?
I was used to seeing myself in stories about depression and trauma. But I never got to see the good parts of myself in those stories. Special interests bring so much joy. Synesthesia means I live in a richly vivid world that no one else even knows about. And I don’t know the meaning of the word “bored.”
Asking myself the weird, bad, rude questions and answering honestly
If you like journaling and making lists, you’ll love doing all the self-reflection it takes to get ready for your autism evaluation. And you’ll be surprised at how quickly a list of 20 things can spin off from slowing down to really consider a question. Starting with little things that had a disproportionate amount of power to piss me off was a good place – honestly, bitching in your “diary” can be therapeutic. For this, you’ll need a safe place to write down things you love and things you hate without judgment or fear.
“Do you have sensory issues” isn’t a great question to ask yourself; we’re socialized to tolerate everything unless a social norm has been violated. But “do you get secretly angry when someone you love cooks stinky food or does that stupid laugh – and then feel super guilty about it” can lead to a lot of insight. “Do you want to be one of those perfect Pinterest meal prep ladies but find yourself disgusted by the taste of microwaved food” was a big one for me.
“Do you like routine” also won’t get you anywhere, because we have to be flexible, fun, and accommodating of other people’s bullshit and intrusions. There are dire social consequences for being disagreeable and not a dude. How about, “do you have to try really, REALLY hard not to give people dirty looks when they bother you?” Or maybe, “will having to jump on a last-minute conference call at work make you feel like putting on your thickest pair of yoga pants, downing half a bottle of merlot, and binge watching trash TV on the couch?”
Whatever it takes to get honest with yourself, do that. Document what comes out. When the doctor or counselor doing your evaluation didn’t have the chance to observe you as a child, the data you bring in as an adult is powerful.
Questioning everything I took for granted
Before my diagnosis, I thought I had developed reasonable self-awareness about my weaknesses. Like being bad at math. Turns out I don’t have any problems with math – there’s just a severe disconnect between my eyes and my brain, so solving long equations on paper is a losing battle. But it was easier for the adults in my life to shrug and say it’s hopeless. When I was growing up, there was a belief that “girls are just better at English and history than math and science.” Ugh. I use language better than most people. That isn’t a braggadocious self-evaluation – it’s a literal finding from my testing. My language gifts fit within a widely accepted cultural narrative and concealed my struggles.
And that is so, so common. Autistic people tend to have “spiky profiles.” We may have incredible strengths in one area, coupled with extreme deficits in another.
I’m optimistic that someday women will be better represented in autism research. Even when doctors and mental health providers know more about neurodiverse women, our stories will still matter.