When "anxiety" turns out to be autism
SURPRISE! You're not anxious, just overstimulated.
I’ve mentioned this stat before but it never stops being staggering:
A whopping 80% of autistic women remain undiagnosed at the age of 18.
And since most of the statistics about the number of autistic adults are extrapolations based on decades-old research done exclusively on pre-adolescent boys, it’s hard to know how many of those 18-year-old autistic women go on to get diagnosed later in life.
But it’s safe to say it’s not many.
Or not enough.
By the time you graduate from high school, you’ve likely passed the point in which a teacher or guidance counselor might know you deeply enough to notice, to suspect, to intervene, to advocate on your behalf.
I was diagnosed at 31.
But that only happened due to a fortuitous combination of luck and privilege:
I was privileged to have the time, technology, and access to do extensive research to better understand and support my suspicions.
I was privileged to be verbal enough to articulate my findings to a doctor, whom I could afford to go see, and who was willing to refer me for a formal diagnosis.
My whiteness, straightness, income level, and lack of visible disability made me more likely to be heard and believed by these medical professionals, who were less likely to apply harmful stereotypes to me that would preclude me from a diagnosis.
But my experience isn’t the norm. It’s the exception.
Because 80% of autistic women are misdiagnosed with other things, instead of or before getting an autism diagnosis.1
Chief among the misdiagnoses for autistic adult women: anxiety, depression, bipolar disorder, obsessive-compulsive disorder, eating disorders, and borderline personality disorder.2
Anxiety was one of mine.
Now I won’t go so far as to say that I don’t have any anxiety. I might…
But it turns out that a lot of what I thought was anxiety (and doctors did too) was actually autistic overwhelm and overstimulation.
I used to think crowds made me anxious. I’d avoid them at all costs, but whenever I found myself surrounded by a lot of people, my heart would race and I’d start to sweat. I’d lose my ability to focus on a conversation and all the sounds in a 100-foot radio is would start mushing together. Everything felt urgent and I was always rushing. I’d often feel an intense urge to flee, to escape, to get away from everyone and everything.
But something interesting happened once I learned I was autistic. At the recommendation of some of the forums I joined, I invested in some excellent noise-cancelling headphones.3
And the first time I wore them at the airport I learned that crowds don’t actually make me anxious at all… when they’re quiet.
I’m no longer being drowned by the sound of hundreds of people talking, laughing, coughing, and yelling.
I’m not being assaulted by the relentless ka-clunk-ka-clunking of 100 different wheeled suitcases rolling over floor tiles or the click-click-click-click of 14 pairs of high heels rushing to their gates.
I don’t have to try (and fail) to tune out the garbled loudspeaker announcements, while also trying to ignore the shrieking steamers from the cafe’s espresso machines and the even louder shrieking of an overtired baby, while also pretending not to hear the businessman reaming out a colleague on speakerphone.
Now, with all that noise largely neutralized, I have no problem spending even multiple hours at the airport. My heart rate remains steady. I don’t rush and run. I peacefully stroll to my gate, a smile on my face.4
This is a gift.
I no longer have to suffer or add to the stress of those around me any time I’m in crowded settings. I get to enjoy myself more, relax more, and be more present.
I also learned that I can set my Apple Watch to display the decibel level of my environment.5
By using this feature consistently, and noting the decibel levels whenever I started to feel the overwhelm creep in, I discovered my threshold for noise:
Now, I regularly check the decibel level whenever I’m in even slightly noisy places, so I can try to head off the overwhelm before it even starts. Once we hit 70db (which is comparable to a busy restaurant or an open office plan), I start keeping a more watchful eye, and once I see 75db (around the level of a vacuum cleaner), I know it’s time to mitigate the sound to keep myself regulated.
I’m sitting on an airplane as I write this, and the environmental volume is hovering right around 80db. But I’ve had my noise-canceling headphones on since I got through TSA 5 hours ago, so I don’t hear it. I know that airports and airplanes are past my threshold, and I now head it off before either has a chance to overwhelm me.
This is why diagnosis (self-identification or “official”) is so important, and why I’m so passionate about this topic.
Without being identified as autistic, I don’t join the forums, so I don’t buy the headphones and I don’t monitor the volume levels on my watch.
Without my autism diagnosis, I’m labeled “anxious in crowds.”
But I’m not.
I’m just autistic in crowds.
But since 80% of my fellow autistic women are still undiagnosed at 18, that means the vast majority of autistic women are walking around also being labeled as “anxious in crowds” or all kinds of other things that they’re not, and believing those things about themselves.
No amount of anti-anxiety medication6 can make their world quieter.
And that’s why I feel like I need to speak loud enough for them to hear me.
Maybe you can help: Know someone who might enjoy or relate to this newsletter?
These are the ones I got, and I love them. But they are $300 and I know that’s prohibitively expensive for a lot of people. There are many cheaper options with noise-canceling capabilities, too, like these highly-rated $50 headphones.
Very relatable - I used to think my anxiety in shops, the bank, pharmacy etc was just my crippling social anxiety. Until I realised that my anxiety was actually being triggered by the fluorescent lighting. It’s staggering to think how many undiagnosed autistic people there must be out there.
"No amount of anti-anxiety medication can make their world quieter" - which is why I'm vehemently opposed to people just being given medication for anxiety (or anti-depressents) without going through more formal testing for autism & other conditions. It's not always "anxiety" or "depression", it could be something else.