“You Don’t Look Autistic.”
Addressing Autism Stereotypes
Autism stereotypes and misinformation are abundant because I hear this response entirely too often. “What does autism look like?” I ask them. They never seem to have an answer for that and yet the stereotypes persist.
I (generally) know how I come off to people initially. In public, I am largely hyper-verbal and endlessly babbly. I’m very expressive and have been known to knock things over while gesturing to narrate my babble. I played a competitive team sport for close to two decades, am generally photogenic, and seemingly can hold eye contact. Not exactly the image people have in their heads when they think of autism.
Autism Stereotypes Don’t Account For Neurons
The problem with that perception is that autism is a neurological disorder. It’s in the brain, you can’t see it. What people can’t see by looking at me is that I babble to hide the fact I struggle with small talk. I really am genuinely curious and want to know about other people but I am terrible at asking people questions about themselves. People see me fidgeting with my jewelry without realizing it’s jewelry curated for me to stim my nervous energy out in a socially acceptable manner.
They don’t see the social anxiety looping in my head. They’ll probably assume I’m rude because I interrupt a lot even though interrupting is a sign of interest on my end. I think that’s a big factor in why I’ve felt more comfortable in Jewish spaces and especially since moving to Israel. Interrupting is built into Jewish speech patterns so people here aren’t as off-put by interrupting and appreciate the engagement whereas I feel constantly tone-policed and diminished in America.
Spicy Brain Complexities
There’s also the fact that I have ADHD too, which went undiagnosed until I was 31. (Yes, that means I was self-diagnosed with autism before anyone realized I had ADHD too.) My ADHD can also account for the interrupting, distractedness, and general babbly demeanor that helps mask the ’tism. Most people don’t realize that 20-50% of children with ADHD also meet the criteria for Autism Spectrum Disorder (ASD) and 30-80% of children with ASD meet the criteria for ADHD. There are a number of crossover and conflicting symptoms that can complicate a diagnosis.
These complications have proven to be even more difficult when women are seeking a diagnosis. It’s commonly claimed that autism affects men more than women by a 4:1 ratio. However, research has shown that due to bias, 80% of autistic women remain undiagnosed by age 18. Once adjusted for bias, the true male-to-female ratio is 3:4. This bias and persistence of stereotypes even by medical professionals is damaging and has serious consequences for the mental health of women who are often misdiagnosed with conditions like anxiety, bipolar disorder, borderline personality disorder, and more.
Eye Contact and Other Autism Stereotypes
I’ve had doctors tell me “but you can make eye contact” as a reason to not diagnose me. Do they really think we can’t make eye contact? (Or maybe I’ m taking that too literally?) The reality is, it just doesn’t come as naturally to us and is different for each autistic person. Personally, it varies on the situation. In social situations, I often have to remind myself it’s been a while since I made eye contact.
This doesn’t come from the autism stereotypes of being unrelatable and lacking empathy like many assume it does. Usually, I’m taking in all the stimuli of the environment, my spicy brain bouncing around the line of its confusing coexistence between dopamine-chasing and overstimulation. Other times, people display more in their eyes than they may want to talk about at that moment and I find this hard to navigate. I feel invasive seeing an emotion they may not be ready to share with anyone while wondering if I should ask.
My real issue with eye contact comes with more heightened emotions. If I’m really angry with someone I will find it almost impossible to look at them. The same goes for situations like when I’m having an emotional conversation with my fiance. If I’m trying to process something heavy or feel vulnerable, trying to make or hold eye contact can really send my insides spiraling.
Another common area of misperception is that I can be hyper-expressive, both with my tone and facial expressions. The stereotype of autism is monotone and non-expressive, which I can be when I’m at home and low on spoons. What more people need to realize is that the “spectrum” in Autism Spectrum is not linear. For every part of the spectrum, there is an opposite part of that spectrum that exists. If some autistic people are on the nonverbal part of the spectrum, there are people that exist on the opposite end of that spectrum and are hyper-verbal, like me.
Autism Problem-Solving Mode: Activated
That’s why I’m posting my own results of autism self-diagnosis tests. I knew that anytime I tried to approach a doctor or therapist for help, they were only seeing the masking. They didn’t see the alexithymia that made me unable to express how I was feeling. So I made a worksheet to compile my results from autism self-diagnosis tests to help give my doctor a deeper understanding.
If you look at my results, the only score in the autism tests that is below the autism threshold is an area directly impacted by ADHD. My doctors may think I’m chatty and social but if you look at my CAT-Q results, which tests for camouflaging and masking, out of 175, my score is 167. These are important contexts my doctors need that I have thus far been unable to verbalize to them.
By sharing my results, I’m hoping more people broaden their understanding of autism. I hope doctors read about my experiences and keep them in mind if any of their patients come to them wanting to discuss autism. Most importantly, I hope it validates other autistic women’s experiences and gives them the confidence to embrace their diagnosis.