Who am I trying to be?

I have always been a socially anxious, awkward, and emotional person. I was diagnosed with autism and at 16 and I’m 26 now. I’ve spent the last 10 years aggressively pushing myself out of my comfort zone in an attempt to escape my own innate social and emotional challenges. I’ve been sprinting as fast as I can away from the emotionally unregulated little girl I was towards what I envisioned as my “true self”. I’ve been convinced my whole life that my future idealized, neurotypical-acting self with no social deficits is my “true self” and that with enough self-discipline and practice I can become her. Identifying with the undiagnosed, untreated version of myself is scary, because it was alienating and painful to be that little girl. But autism doesn’t go away, even if you try really hard to forget you’re autistic.

In the book Brilliant Imperfection, Eli Clare critiques the notion that disability is something people can or must overcome through hard work in order to thrive, and explains that this belief is rooted in the ideology of cure, which doesn’t neatly apply to most disabled people since so many disabilities are congenital and uncurable.

But for some of us, even if we accept disability as damage to individual
body-minds, these tenets quickly become tangled, because an original
nondisabled state of being doesn’t exist. How would I, or the medical-
industrial complex, go about restoring my body-mind? The vision of me
without tremoring hands and slurred speech, with more balance and
coordination, doesn’t originate from my visceral history. Rather it arises
from an imagination of what I should be like, from some definition of
normal and natural.

The person I try every day to become never existed, does not exist now, and may never exist. That is a difficult thing to accept in a world where autistic people are punished for not conforming, for being “weird”, “immature”, “off-putting”, “cringe”, etc. I’ve never felt like I was trying to cure myself, but reading Brilliant Imperfection made me realize how deeply my own internalized ableism is rooted in the ideology of cure. This realization has not magically cured my internalized ableism, but it certainly held a mirror up and opened my mind to another line of thinking that I will continue to explore.

A Spectrum of Expression

The image above is an untitled UV acrylic painting by Cecile Lobert, an autistic and non-verbal painter. Every autistic person deserves to have their story seen, not just those of us who communicate through traditional methods. Cecile may not use words, but she expresses herself vividly and gives us insight into her life that others cannot do for her. She uses textures, colors, and emotional depth that past and present messaging from neurotypical people leave out.

In 2009, a non-profit advocacy group called Autism Speaks released a nationwide PSA called ‘I Am Autism’, which featured a voiceover from the perspective of their personification of autism. Here are a few lines from the PSA:

“I work faster than pediatric aids, cancer, and diabetes combined
And if you’re happily married, I will make sure that your marriage fails.
Your money will fall into my hands, and I will bankrupt you for my own self-gain.
I don’t sleep, so I make sure you don’t either.
I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain.
You have no cure for me.
Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist”

Autism Speaks has since apologized for their PSA, but the damage has already been done.  Like Chimamanda Ngozi Adichie explains in “The Danger of a Single Story”, people form lifelong beliefs about others based on the first stories they hear about a demographic outside of their own, especially if they never hear from the demographic being discussed.

16 years after ‘I Am Autism’ aired, the Secretary of Health and Human Services said in a nationwide press conference that autistic people will never be able to pay taxes, hold a job, write a poem, go on a date, or use the bathroom unassisted. If you are autistic and or have been emersed in neurodivergent spaces, you know that depiction is not true and certainly not whole. Even autistic people who experience the struggles described above, they can and do have vibrant, meaningful, happy lives. The Autism Speaks PSA and the HHS secretary’s statements are both centered around arbitrary lists of things they think autistic people cannot do, framing it as if not being able to do those things makes autistic people’s lives miserable and empty. These narratives influence the greater population’s perception of disabled people, which then influences policies and practices that harm disabled people.

Below you can see more art from autistic artists. Seeing through their eyes rather than the scornful eyes of people who wish to eradicate autism gives them agency and a voice that is being stripped from them. I hope the depth, color, texture, and care put into these pieces allow you to see the depth and range of autistic people’s experiences and abilities which have been downplayed by people with a lot of influence and reach.

I wish I could give myself a lobotomy

This is gonna be a word salad but it’s actually crazy navigating this world as a person with anger issues, bpd, anemia and autism. I know, girl pick a struggle. To give you a little glimpse into my life. Being anemic is weird. As stated in class, people only think disabilities you can see are valid. And don’t get me wrong if I’m being honest I don’t consider being anemic disabling but maybe I don’t consider it disabling because of that subconscious bias as well. As someone with anemia one thing I do ( as well as others) is when I get up too fast my vision gets fuzzy like I’m seeing circles and static and I have to lean over and sit sometimes even lay down. One could argue that that is disabling. And I could see why because that affects me when I’m working (as a receptionist I’ve had to do that sometimes) when I’m at a conference or meeting or babysitting just anything in life.

Read more: I wish I could give myself a lobotomy

Don’t get me started on having bpd- I sorry un-medicated and untreated bpd. And yes you guessed it ( that is because of finding a psychiatrist and therapist that will take our parent’s insurance). It affects every aspect of my life as well but especially my relationships with other human beings. People think they are accepting and “woke” until your friend goes off and becomes satans right hand man in an argument and then 25 minutes later is like “bro remember this lmfaooooo” like NOTHING happened. I’ve lost friends over it. And I’m not okay with it. I’m not. I’m not gonna sit here and lie to you guys and be like it’s whatever it’s there loss. No my feelings are hurt and I wish I didn’t have this in my brain. It’s almost kinda debilitating. But idk it feels wrong to call it debilitating because that feels reserved for things like schizophrenia, Down syndrome, paralysis etc… I wish I could just take a pick and fix my brain and be normal. Yes I said it. Don’t believe these people- having mental illnesses is not normal and that’s okay. It’s not a bad word.

Read more: I wish I could give myself a lobotomy

And to TOP IT ALL OFF god just had to make me neurodivergent as the final touch. Everyone in my family is neurodivergent. From my mom to my dad to me and my little sister. Shit we think the dog is too 💀. But it’s so crazy cuz the reason my parents (mainly my dad) never had anything done about it was because not just because they didn’t have the money, but also the community they’re in. It’s already bad enough society is so 👀 about being autistic and then you have the black community which is like worse towards people who are different. For lots of black people who have autism/neurodivergent or physical disabilities, our first and main bullies are the people who look like us, talk like us, dress like us, worship like us. It’s so alienating. Don’t worry it’s gotten better because of the newer generations but it’s just like damn can we catch a break . It’s a good thing this is not an on paper assignment cuz there’d be tears stains all along the page😹.

My Experience with Gendered Autism

(“SHAPES AND COLORS,” a colorful, self-portrait stylized construction paper collage piece I created centered around masking.)

Growing up it was incredibly obvious I was on the autism spectrum. I was very rule-following and smart at school, getting described as “demonstrative” by preschool teachers (who calls a four year old that word?), but was very sensitive about minor things like the texture of lotion or potatoes or certain fabrics, or toys being organized differently from the way I wanted them, or frustration with not being correctly understood. While no diagnosis is the same, these are signs of being on the spectrum, and at three years old when my mom talked to a friend who was a psychologist she posited that I might be autistic. 

But when I went to get evaluated, four year old me was denied an official autism diagnosis. Then I was denied again at age seven, and instead put under the label of Sensory Processing Disorder. I finally got the Autism Spectrum Disorder diagnosis at age 12 (a year after also getting diagnosed with anxiety and depression). I also found out that in the years before the DSM-5, I was on the part of the spectrum that would have been denoted Asperger’s Syndrome, but luckily I got the diagnosis too late to become attached to that term and was educated of its problematic origins. 

Looking back on my history of diagnoses, I always wondered why despite it being obvious with all my quirks growing up I was over and over again refused a clear answer. But learning about gender and disability studies/justice in the last couple years, it has become apparent why: I grew up a girl. 

I was very lucky to have the privilege of parents that let me express myself whatever way I wanted as a kid, and I did exactly that in my special interest of dinosaurs, which were gendered as a “boy” thing. But I realize that I was still unable to escape the social part of socialization: Specifically, the experience of girlhood (as I have understood from mine and others) that involved making yourself and your problems smaller, while boys around the same age were allowed to be loud and take up space. 

This difference was especially present when looking at the differences between ways that autistic cisgender boys expressed their traits without much dramatic behavioral intervention or judgement from other kids, such as verbal or physical expressions of stimulation. Meanwhile, if a young girl was perceived to be “different” in the way they behaved, they faced more bullying and ostracizing than boys might. So as I grew up into the American school system as a girl, I learned that I would face more unspoken social consequence for expressing my traits, and thus felt more pressured to mask. And as these traits went unexpressed, from classrooms to doctor’s offices, they too went undiagnosed.

Finding out that this experience I had growing up was validated through the study of how disability is embodied differently across genders and social standards (as Shakespeare implies, there is no accurate one-size-fits-all model of disability), I felt quite vindicated honestly. Even after transitioning and finding community with other transgender autistic people, I can still see this difference in how traits are expressed due to assigned-at-birth-gender socialization. I worry that I may seem annoying at times for making this intersection of my identities my “personality,” but with how much I’ve come to terms with how it has affected my entire life I cannot really deny its stake in the person I’ve grown up to be.