Congrats on the Autism!

On diagnoses, disability justice, and pathologizing differences.

Last month I was diagnosed autistic. My best friend of 25 years sent me a picture of a cake with icing that read: “Congrats on the Autism.”

It took me almost three decades to gain this kind of clarity about who I am. A few years ago I became acquainted with disability activism, and dedicated myself to unlearning my deeply internalized ableism. I credit some dear friends who opened my mind and offered their expertise via in person conversations and social media, which I soaked up enthusiastically like an eager sponge.

Over the course of the last year or so, I’ve been gently turning this idea over in my head… the idea that I might be autistic. The more I learned about neurodivergence, the more I identified with being atypical. There are many ways to be neurodivergent, but in particular I found many consistencies between my experiences and autistic traits.

I started keeping a note in my phone titled “Autism things”— it’s a list of the things I do or feel that I believed were potentially indicative of autism. The list includes things like: 

• I have a hard time answering big, open ended questions. I need specific questions.

• I’m very direct and literal. I’ve been told that I am defensive or argumentative at times, and I’m consistently confused or caught off guard when someone suggests that, because internally I do not feel I’m being confrontational. Just logical.

• I hate public speaking and struggle with thinking on my feet. I freeze up when I’m put on the spot to speak on pretty much any topic, except for special interest topics that I am very well versed in.

• I can’t interject into an existing conversation; I need to be asked a question directly in order to enter the conversation.

• I hate small talk and cannot fake interest.

• I take a long time to process and respond to happenings and information.

• My friends in high school said on several occasions, albeit jokingly, that I was born mature and didn’t have feelings or emotions.

The list goes on, but interestingly, many of these are characteristics of my being that I’ve been aware of for well over a decade. I’ve known these things about myself, but I haven’t known what they meant. Long before I ever started using terms like “ableism” or “neurotypical,” I would assert that I was incapable of faking anything; I’ve never known how to say or do anything other than what I genuinely think or want to do. I’ve said for years now that I am incapable of being deceptive. I hated role playing scenarios in school classes or leadership training workshops. My mom told me that as a child I was very quiet but clearly very engaged and observant, processing information on my own timeline; people tell me the same thing today. I’ve always strongly preferred to plan out my day intricately, and last minute changes that I am not expecting have always rattled me and made me feel deeply uncomfortable.

But the thing about going undiagnosed autistic is that many of these traits are behaviors we’re socialized to think negatively of. Many of these traits are things that I thought were wrong with me. Over the years, I’ve heard variations of the following sentiments:

Don’t be so uptight! Go with the flow!

Why do you always have to be right?

No need to be nervous or embarrassed, we’re all friends here, just act out the scenario!

Why are you being so quiet? Don’t you have thoughts on this?

You’re too blunt, it hurts peoples feelings.

In each of these interactions, people thought that my behavior did not suit the situation. I wasn’t following the socially determined script. But our popular models for social interactions are all neurotypical... And news flash! There’s a huge community of people who do not subscribe to these norms! And that does not inherently make us rude, or mean, or insensitive, or poor communicators.

I recently saw a social media post that likened being autistic to speaking another language. Some of us can switch back and forth between autistic dialogue and neurotypical dialogue, but when we speak neurotypical we have an “accent.” When autists try to speak neurotypically, that’s a key component of masking.

For the uninitiated to the atypical, masking is when people learn, practice, and perform certain behaviors and suppress others in order to camouflage better with the people around them. Masking might look like forcing eye contact during conversation, imitating gestures or facial expressions, feigning interest or downplaying personal interests, or developing a catalog of rehearsed responses to common questions.

Little did I know I’d been masking for most of my life; pushing myself through deep discomfort because I thought I had to act this way, look this way, speak this way to be liked, understood, appreciated, or successful. I thought that there was something wrong with me. I thought that my bluntness was a blade that needed to be dulled, and my slow processing time a tape to be sped up.

I am so relieved to know now that I was wrong.

Several of my close friends are well versed in autism and neurodiversity; some of them are autistic themselves. But the vast majority of people in my life have a very surface level understanding of autism. And they will likely be surprised to learn that I am autistic because of their preconceived notions of what autism looks like. These preconceived notions are particularly skewed by gender too; women and girls frequently go undiagnosed, largely because diagnostic criteria were developed around cis males, and also because women and girls tend to have more capacity for masking.

Now a quick caveat on diagnosis: there are many reasons to not seek a diagnosis, such as medical discrimination or being blocked from immigrating to some countries. Diagnosis also does not guarantee accommodations or any supplemental forms of healthcare. I want to emphasize that self-diagnosis or self-identification as autistic is one hundred thousand percent valid. You do not need a formal diagnosis to be considered autistic.

But for me personally, this felt like a necessary step to feel validated, to wash away any lingering imposter syndrome about my disability.

That said, my vision for the future is one in which we holistically acknowledge the nature of neurodiversity— that “normal” is a fictional concept, and that all of our brains work in wonderfully diverse ways. A future in which perhaps we won’t need labels or diagnoses to feel validated or understood.

People today are frequently misdiagnosed. Autists previously diagnosed ADHD. Folks diagnosed bipolar when CPTSD actually better explains their experiences. But none of this would matter if we just accepted this broad diversity in brains and cognition as the norm. If we just allowed people to be different without pathologizing their differences. None of this would matter if everyone— particularly folks closer to the neurotypical side of the spectrum— worked harder to be accommodating to these differences so that atypical folks weren’t forced to mask, or fight for accommodations, or resort to self harm.

It’s also important for me to note that while I believe in building this future now, a future in which neurodiversity is the norm, I want to caution white neurodivergent folks from overstepping. Particularly those of you who have low support needs… there is a concerning trend amongst young progressive white folks to inflate their disability, queerness, and neurodivergence as a means to claim marginalized space in leftist movements. Please understand when it’s time to sit down and listen. Listen to your elders, listen to Black and Brown folks, listen to disabled folks with high support needs. Know your place in the movement (hint: it’s not at the front).

Here is where I also remind you that I am relatively new to this world. I am about four years into my anti-ableism journey and one year into identifying as neurodivergent; I am by no means an authority on anything other than my own experience, and I continue to look to and learn from disabled leaders. You should do the same.

But I hope that I can be a portal for people who are unacquainted with autism. I hope that people who may otherwise not knowingly interface with the atypical community will begin to understand that we are everywhere. And I hope that I can influence my neurotypical pals to invest in their own anti-ableism journeys.

P.S. My inbox is open if you have any questions about autism, seeking a diagnosis, or any other curiosities about neurodiversity.