I wasn’t diagnosed with autism until age 46. This is partly because I’m a woman, partly because I grew up in a time when “functioning” autists were overlooked, and mostly because I learned masking very early on. Even in my diagnostic evaluation, the specialist kept saying that I’d done almost all of the “training” that most autistic children get, but I’d done it all by myself. I’d carefully observed other children, in particular those who were socially adept, and I’d tried my best to mimic their behavior as a way of protecting myself from bullying. I tended toward the literal, thinking that a particular brand of clothing was the way to be normal, but I hadn’t been entirely wrong, either.
So, if I was so well-adjusted, why did I seek out a diagnosis at all? Why should I be considered a useful voice about the autistic experience? Because, like many older women who are being diagnosed now, I had burned out of masking, compensating, and self-flagellation as techniques for survival. Even though I didn’t go through ABA formally, I internalized so many of the harmful messages about why my autistic self wasn’t allowed to exist in the world, and I had to constantly be on guard to make sure that I didn’t let the real me peek through. Is this any different than any neurotypical person learning what is socially acceptable behavior? Yes, it is. Because it wasn’t that I was learning socially acceptable behavior. I was learning to not be myself in a deeply fundamental way.
Studies have begun to come out, showing the results of autistic masking—and they aren’t good. Autistic adults have much higher rates of suicide (https://theconversation.com/autistic-people-are-six-times-more-likely-to-attempt-suicide-poor-mental-health-support-may-be-to-blame-180266). And there are links now to show that the more autists mask, the worse their mental health is (https://www.psypost.org/2023/02/camouflaging-of-autistic-traits-linked-to-internalizing-symptoms-such-as-anxiety-and-depression-68382). I’m often accused of faking autism to get attention. I’m often told that I should sit down and be quiet because parents of children who have more severe autism are the ones who should speak out, and that people with “mild autism” or “high-functioning autism” don’t understand what it is like to deal with more “severe autism.”
The reality is that “high-functioning autism” is a misnomer. My learned survival trait of masking got me through elementary school, middle school, and high school. But it was my autistic hyper-focus and my intense routines that made me both a star and an oddity in college. Hiding my autism takes up a good deal of time and energy—and it saps from my true strengths, which are considerable. The more I masked, the less I was able to learn at the rate I’m capable of. The more I have to pretend to be neurotypical, the less I am able to be the person I’m meant to be, who is brilliant and capable—and abrupt, blunt, introverted, and just plain weird. I learned as a child that the autist in me was unacceptable, that it was better to suppress that and to be mediocre. But I’ve gradually refused to accept that choice. I have little interest now in hiding my real self and I’m frankly furious that society taught me for so long that this was the appropriate choice.
The costs of masking were many:
1. Constant migraines that I suffered two or three times weekly for decades.
2. Crashes and meltdowns after forcing myself to do big social events that exploded my sensory tolerance levels.
3. A high level of self-blame and self-disgust that led to me falling into suicidal ideation for several years.
4. Exhaustion because I was working so hard to pretend that I was someone I wasn’t and giving energy to a façade that had little purpose.
It is both sad and amusing to me at times to realize that no matter how much I masked, I didn’t really pass as neurotypical anyway. Ask anyone who knew me in elementary school through high school. They wouldn’t have used the word “autistic,” but they would have called me socially awkward, passionate about weird things, smart but strange, and terrible at small talk or of grasping non-literal communication. Even masking at my hardest, I’m still never going to be neurotypical, so what is the point of me hating myself and using up all the energy I might use to actually be the best version of me that I can be?
Still not diagnosed because the hospital/university my husband works for (non-medical position) forces me to use their psychiatry department due to their crappy in-house “insurance.” Ivy League, my ass. Anyway, 62, undiagnosed, with bad, uncontrolled generalized anxiety disorder (“just breathe/meditate/shake it off”), self-hatred unabated since early childhood, and STILL brutally bullied by other adults who smell blood in the water. I talked myself out of getting a Ph.D because I was sure I was too stupid to do it (and terrified of defending it). I can be hyper-focused, organized beyond anything NT can accomplish (made a career out of it in publishing), and I know objectively I’m brilliant on an IQ level.
And yet, I can’t get diagnosed. Today I had a TIA-that-isn’t-a-TIA (again!) due to anxiety about the brain disease I now have that causes … TIAs. Due to the anxiety of appearing non-NT. So whee! ER visits simply due to autism side “benefits.”
Is there a light at the end of the tunnel. Because at 62 the bullying won’t stop from NTs who see through my damn-good masking.
Diagnosed at 50 and very similar experiences. 🙌