April is “Autism Awareness Month.” I jokingly call it Autism Bewareness Month because much of the information shared about autism is framed in a way that makes it sound scary, like headlines saying, “signs and symptoms that your child might be autistic!” The idea is to make parents afraid that their child is autistic so that they’ll pay money to enroll their child in services to rid their child of autism. To cure it. Fear encourages swift action, action turns into profit. Money makes the world go ‘round. You don’t need to be a professional marketer, psychologist, or financial advisor to know that.
Aside from being a professional in tech, I am autistic. I didn’t know I was autistic until I was an adult and a parent. However, I did know that I was different from an early age. When I was 7 years old, I was labeled a “problem child” by the school. Friends have called me weird and awkward. Adults have called me shy. Co-workers have called me robotic. Ex’s have called me unemotional and cold-hearted. There has been a pattern to my life that not even “professionals” could see until I had lived it long enough—until I struggled long enough.
To recognize April as Autism Acceptance Month instead, I would like to share some of my own stories with you.
Internalized Ableism from Masking
When I was a little kid, I used to talk to myself. A lot. I think I did this because I don’t think in words. My thoughts are like ever-changing, dynamic visuals. Some parts of the picture are in great detail because that’s what my thought is focused on, working with it, manipulating possibilities, while the rest of the picture is just blank or missing because it’s not what I’m thinking about. It’s ancillary data that I deprioritized to enhance my focus, but it leaves room for more.
Talking to myself was a way for me to translate my visual thoughts into language. Because words don’t come naturally to me all the time, I would often pretend like I’m having a conversation to actually practice communicating with other people. When reading, I preferred to read out loud so I could hear and feel the words come out of my mouth. To experience the words in multiple ways so that I could process the language back into my native form of communication so that my brain could interpret the meaning.
However, growing up, this was seen as weird. Everybody discouraged me from doing it, telling me that I shouldn’t talk to myself, that only “crazy people” talk to themselves, further embedding ableism into me by framing those invisible disabilities as something I shouldn’t want to be seen as.
This is the earliest form of “masking” I can think of being forced upon me. I willingly changed my own behavior to no longer talk to myself in front of people, to avoid upsetting them and receiving their unsolicited judgment, to avoid being told that I was “crazy”, to avoid feeling like I was bad and broken. Instead of talking to myself, I would wiggle my tongue as if I still was talking, but with my lips closed, and was careful not to move my jaw so other people couldn’t see that I was still doing it. It was something I needed to do in order to be effective at thinking and communicating and nobody understood that. I didn’t even understand that. How could I? I was a child.
Anxiety and Depression Settles In
I have a distinct memory from when I was about 10 years old. I was walking home from school and I was doing this replaced behavior. I was all alone, so it’s not like anybody was there to overhear me, but I didn’t want people passing by in their cars to see me do it so I continued to mask. But in this memory, I recall thinking whether or not I had real thoughts. I know, very existential for a kid.
What prompted me down this line of thinking was being told many times about the voice in my head. That everyone has this voice in their head that tells them what to do. I didn’t. I had pictures, not voices. But as a kid, you can’t just tell people that you don’t have that voice in your head. They’ll think you don’t have a conscience. That you don’t have morals and that you don’t have anything to tell you right from wrong. That’s what most people mean when they refer to this “voice in their head”. I am a very literal thinker, as many autistic people are, so for me, it was at face value. A voice. In my head. And I didn’t have it. Because I didn’t have this voice, that I had to physically speak to produce this voice, I thought that I wasn’t capable of thought, or that I was thinking incorrectly. I think this was the first time I felt like I was less than human. That I wasn’t human enough because everybody else could think without talking to themselves. So why couldn’t I? Was I broken? I must be. That was the only logical reason. Nobody told me about autism. It wasn’t normalized for me. I didn’t see it represented anywhere on TV, in books, music, pop culture, or the media. I never met anyone else that experienced life the way I did, or if they did, they were quiet about it. I hadn’t even hit puberty yet.
So from an early age, I knew I was different. I just didn’t know why. And when you’re in a world where nobody acknowledges that this kind of difference exists, then there are two paths you can go:
- Path A: you’re not actually different, everybody is just like you, this is normal, and you just accept that life is hard, so you struggle without ever asking for help because you don’t know what that help even looks like. Anytime you ask for help, people minimize your experience because somebody else has it harder – suck it up buttercup. Just pick yourself up by your bootstraps. Deal with it. You’re meant to struggle. That’s just how it is. You’re taught that your life’s experience is invalid and you often deny it and invalidate yourself as a result before anyone else has a chance. You internalize ableism and hurt yourself and possibly others with the expectation that everyone is supposed to be able to just do it.
- Path B: you know you’re different, but you hide it, and you still struggle without ever asking for help because you’re not convinced anybody would help you or that you’ll be treated badly for asking. You’re taught that your life’s experience is wrong, broken, and bad and you often over-apologize and feel like a burden on other people for just existing. You internalize ableism and are shocked, possibly envious, maybe even a little angry, when you see others living authentically and may inadvertently hurt others because you’ve been taught to just keep it quiet and they’re breaking that sacred rule.
These two paths often intertwine. Sometimes you walk down one for a while and then sometimes the other. Sometimes with a foot on each simultaneously because we’re pretty weird like that. These are paths that not just autistic people follow, but are applicable to any marginalized person, especially those that are marginalized by invisible situations like gender identity and sexual orientation. Of course, people of color can also mask by “acting white”. Coming out of the closet, intentionally unmasking to live openly as your authentic self means stepping off these paths and into the open. It’s scary, and rightfully so, because we risk increased discrimination, emotional distress, and exclusion from people who loved us, but only on the condition that we stayed in our lane. Walking these paths often contributes to anxiety and depression and can lead to suicide. The rate of suicide is 3 times higher for autistic people, especially autistic women.
My Feelings Still Didn’t Matter
In a separate memory from when I was 12 years old and in school, I think we were doing proofs in maths class. I didn’t understand any of what we just went over, so I raised my hand, the teacher came over, and I remember saying flatly, “I don’t understand.” The single worst question that I always got in response was, “well, what don’t you understand?” Once again, I couldn’t put it into words. I don’t know what it was that I didn’t understand and I didn’t know how to communicate that to my teacher. More often than not, the teacher would shrug, stumble over some explanation in the hopes that would be enough.
I wasn’t totally oblivious to their body language and facial expressions. I could see I was making this teacher clearly uncomfortable, so the next part of my “script” was that I’d pretend to understand. I did this to ease my teacher’s comfort, not mine. I was taught that other people’s feelings are more important than mine. In my autistic brain that has an “all or nothing” interpretation, that meant my teacher’s feelings were more important than my education. Again, I was a kid, I didn’t understand the nuance of when I should prioritize my feelings. I lack all “gut feelings” in this realm. When I didn’t pretend, the teacher would often get too flustered or frustrated (or perhaps another emotion that I couldn’t identify correctly), but would always move on to another student to answer their much easier question anyway.
An Autism Diagnosis is a Privilege
People like me would fall through the cracks in the education system. We were left to struggle because the teacher, quite understandably, wouldn’t have enough time to help me on an individual basis when they’re in charge of a class of 25 students. And without a diagnosis, without a label, I didn’t qualify for any accommodations in school.
Even if somebody had noticed me and considered autism, the studies done on autism are still based on white, male children. Many women and people of color still go undiagnosed or misdiagnosed because autism does not present consistently for everybody. Stereotypes are wrong and hurtful and are misunderstood as oppositional and even criminal behavior as we grow up.
I was fortunate enough to be diagnosed as autistic last summer. It’s bizarre to me how it went unnoticed for so long, but I suppose that’s because I’m biased as I live in this body and mind, and the adults in my life when I was a child did not. It was within the last year that I decided I wanted to “unmask” at home. I felt like my house should be my safe space to be authentically me, so I started by allowing myself to talk to myself again. I can’t tell you how liberating it feels. How functional I feel. How much more I can process things in my life now that I’m doing it in a way that actually benefits me. Perhaps I can’t tell you because neurotypical people have always been doing this and not realizing how much they’ve been taking it for granted.
