I was 35 years old and really getting to know myself. Now, I’m 35 years old and autistic, thanks to a recent diagnosis. It feels like something new, but I’ve really been autistic all along.
All the different things I obsessed about collecting as a kid – rocks, books, clocks, pogs, small figurines? Might have been autism. The hours I spent joyfully arranging and rearranging my collections? That could have been autism. My intense childhood “tantrums” where I would hold my breath until I passed out? My constant struggle with being socially “appropriate”? Also possibly autism.
Every day brings a succession of tiny earthquakes that are rattling my life into focus. What does any of this mean, and what does it mean for me to accept that I’m autistic?
Like many stories about receiving an autism diagnosis, mine starts with a lifelong feeling of being different from other people. However, the possibility that I might be autistic didn’t cross my mind until I was in my late twenties and learning more about trauma. I knew that I had CPTSD from childhood abuse, and as I read different articles and blogs, I kept noticing places where my experience with CPTSD sounded a lot like other people’s experiences with autism.
When I read about autistic meltdowns, I thought, “Wow, that sounds exactly like my panic attacks.” But it hadn’t yet occurred to me that my panic attacks might actually be autistic meltdowns.
As I progressed with trauma therapy and EMDR, I noticed that some things were getting better for me, while other things felt like they were getting worse. I felt like my internal experiences – my thoughts and my emotions – were improving. I felt a shift toward more mindfulness and reduced negative self-talk. I felt my resilience increase. Finally, my brain felt like a nice place for me to be.
As a result, I was more able to understand and express my thoughts, emotions, and needs in a given moment. However, that led to me realizing that I frequently experience mental and emotional distress. It was a bummer at first, to have flashing moments of feeling present and centered just to realize that actually, my nervous system is jangling due to some previously unrecognized input.
The distress from my own thoughts, flashbacks, and emotions was lessened, but I was noticing how distressed I was by noises, bright lights, the feel of my clothes. I realized that I have always struggled to keep track of dialogue in movies and conversations. I could see how other people’s emotions can be overwhelming for me, regardless of whether they’re expressing anger, sadness, or even joy.
I especially noticed how stressful I found social interactions. I was more confident in how I was feeling and what I wanted to say, but I was also paralyzed by not knowing if what I wanted to contribute was appropriate, relevant, or something that I needed to say at all. In groups of people – even online – I will shake, sweat, and feel my stomach tie into knots with the effort of deciding if I should speak up. This was not getting better with therapy.
It’s Autism, Actually
Around this time, I subscribed to the Trauma Geek on social media for the excellent information they share. I started noticing their posts about autism and other parts of the neurodiversity spectrum, and more than once was totally floored by how much I saw myself in them.
One day, I decided on a whim to take some online autism assessments. All but one indicated that I was almost certainly on the spectrum, and I should see a doctor about getting a formal assessment.
So I did.
As it turns out, I’m autistic.
As a kid, I was called argumentative, defiant, lazy, moody, negative, rude, and selfish. As it turns out, I was autistic.
As an adult, I’m often considered irritable, hypersensitive, unreliable, unemployable, and too opinionated. As it turns out, I am autistic.
This paradigm shift has been profound. For much of my life, I’ve been told that if I just try harder, I could be like other people. With the right therapy, meds, diet, exercise, and good old fashioned effort, I could overcome my crippling anxiety, trauma, and whatever-else-is-wrong-with-me to be a better daughter, a better friend, a better student, a better employee, or have something like a “normal” life.
I honestly believed it, too. I have been holding onto expectations for myself, that if I go through these steps, then one day, I wouldn’t be so different. But that isn’t how this works. I realize now that I’m not going to therapy myself out of being autistic, and I’m not sure that was a helpful approach for anxiety or trauma, either. These daily earthquakes are also revealing the fault lines of my internalized ableism.
Accept and Accomodate
Accepting my autism means accepting that some things are hard and overwhelming for me because my brain works differently. Social situations, schedule changes, unanticipated demands or expectations, phone calls, and certain sensory input often cause intense physiological reactions that can inhibit my ability to complete “normal” tasks.
Acknowledging this reality doesn’t mean accepting that everyday tasks must always be a succession of miserable struggles. Rather, it opens up opportunities to do things for myself to make my experience a little easier. I can wear headphones while I’m shopping. I know what kinds of clothing and food are best for me to avoid sensory distress. I can add to my overall resilience bank by getting enough sleep, moving my body, and making time for my special interests. I can have compassion for myself when I do all of these things yet still struggle.
I’m figuring out how to accept my autism, but I wonder if other people will. There are things I can do to accommodate myself, but there are also things I need from other people in order to feel like I am safe and belong in a particular place.
Will it be ok if I visibly stim around other people, or will it lead to further social isolation? Could I ask a potential employer to work from home and have schedule flexibility or would I be seen as even less reliant and employable than I already am?
I’ve been autistic my entire life, and it feels like there have been consequences for that. Do those consequences really go away once I self-disclose my autism?
So far, the answer to that has been no. I told my dentist about my autism diagnosis because I struggle to make it through a simple teeth cleaning without turning into a crying, hyperventilating mess. I figured that having information about my diagnosis might help contextualize some of my experiences with them as a patient. My dentist laughed and said that everyone is uncomfortable at the dentist.
I told my primary care doctor about my diagnosis, and his first response was incredulity. He was skeptical about where I received this diagnosis, and then proceeded to tell me that I’m smart, and smart people think differently, but that isn’t the same thing as autism. I guess my doctor doesn’t think smart people can be autistic, or maybe he thinks autistic people can’t also be smart.
I’m grateful to my partner and the friends with whom I’ve shared my diagnosis, who have been absolutely lovely and understanding as I figure out how to express my autistic self. It’s quite frustrating though, to realize there are levels of acceptance that are up to other people. Of all the things I’ve been working to accept, that has been the hardest.