Every time I write about Autism people leave

The Big A // because I left the room when people talked about autism

Every time I write about autism people leave. They leave the room, they leave the bar, they unfollow me, they don’t call back or ignore the dropping of a capitalized word, all together. 

Despite being pathologized countless times, told I am not good at recognizing people's facial expressions. I can always tell what they’re thinking when I drop my big A word.

She’s making it up!
She’s watched to many tik toks!
She wants attention.
She doesn’t look autistic.
She can't be autistic.

I know this because I left the room when autism came up. When someone showed a little but too much of themselves, offered me something I didn’t wanna hear, a diagnosis of chronically online. I rolled my eyes and tried my best to hold their humanity in the palm of my hand, only to stuff it in a snotty kleenex after the fact. It felt too cringe. Too close to my own shit to look in the eyes, to pay attention enough to care. To listen.  

I never planned on writing about being Autistic. I avoided the idea for years after friends and therapists suggestions. On the phone with my friend Alexandra and she asked “do you want me to tell you?”, she forwarded me a list and it felt like someone reading my diary at me. It was too much to ignore. A flashing light of a limit reached years ago. In a doctor's office a couple weeks later I was told I was “too pretty” and then “too anxious” to be autistic. I was given a list of forms to fill out, come back in 6 weeks with a letter from my mother and a stack of my report cards as a child. “Something is wrong, we just need to sort it out”. I walked to a park and sat at a bench for an hour, I think. I couldn't be autistic. A doctor just told me so. A doctor who didn’t listen to me, a doctor that said I just need to “try harder”. He didn’t think I was autistic. I couldn’t be and therefore I wasn’t.

I tick all the boxes of late diagnosed Autistic woman, in some sick medical system bingo card. I haven’t met another autistic woman who’s score card doesn’t almost exactly match mine. Threatened with hospitalization and institutionalization throughout my childhood and teens. Diagnosed with OCD at age 19, diagnosed with BPD at 21, prescribed too many SSRI’s in my 20’s and then not enough. Prescribed medications for epilepsy patients and heart conditions. I was “just evil” according to my family, a “bitch” to my peers and classmates. A diagnosis of weird girl at the back of the room, something that no amount of rubbing can ever scratch off. Once you’ve been branded, that’s it.    

In a way I don’t blame people. I didn’t stay when others told me about themselves. Cringed at the idea of saying the big thing out loud. Judged others for their blue hair and stim toys, rolled my eyes at the idea of #neurospicy (ok I still do, but now because I just want people to say Autism). To call it internalized ableism is not enough. Self hatred, loathing. If I could just muscle through, why can’t everyone else. 

I couldn’t muscle through it. I failed hard at my performance of Normal Woman, Good Woman, Capable Woman, Nice Woman. 30 years of masking has taught me that, I can’t hide it. People clock your weirdness, your otherness.¹ I’ve been called enough names by men and criticized for the way I speak, dress, wear my hair, make eye contact or don’t make eye contact, that I know people know whether or not I tell them. I screamed in public, lost it at the mention of a changed plan or a loud noise in a cafe, and jumped out of more moving cars than I can count on both of my hands. Wrestling it down, pretending it isn’t in the room with us benefits everyone else. Never the Autistic person.

I don’t think people mean to leave. It’s not conscious. It’s a series of hearts on an instagram post or a comment of “you’re ok”. Anything to dismiss the capital A in front of you. It lumbers into the room to make everyone feel uncomfortable. Something to turn and avoid, something that inevitably highlights the ugliness of ourselves, and the room we stand in. Of course people leave, it's something to fear. Something that haunted classrooms and living rooms in the 90’s. The thing that steals little white boys away from very nice middle class family’s. Something writers and journalists feel they can weigh in on, poke fun of. A trend sweeping chronically online white women with coloured hair. (I am once again paging

Freya India

to do better after this article).

Any other tick of marginalized and people don’t just leave, they kill you. If you’re brown and autistic people don’t believe you, they hoops of diagnosis are far more challenging to run through². If you’re Black and autistic you’re more likely to face police violence in the throws of a meltdown, or for simply just existing. ³

I don’t know how to tell the world they should care about autistic people. I know they don’t.⁴ I wish they did, I wish the needs of Autistic people were taken seriously. I wish we didn’t have to perform “disabled-enough” for people to listen. I wish we weren’t constantly told we’re “ok” or “fine enough” or “too much” and simultaneously not enough. I can’t not talk about it anymore. I spent too long not talking about it. Pushing parts of my face around until they made other people feel comfortable. It’s my operating system. And not talking about it quite literally kills us. Not because being Autistic kills you, but because people do not accomodate Autistic people and their needs (the average life span of an autistic person is 36, something I think about daily). ⁵

So I do now know how to get you to care about autism. But I have writing. I have a camera, I have a music and shouting. I have threads to pull. And since I started talking about I’ve gotten DM’s from strangers, telling me they feel the same. Conversations outside the internet with people to say “this helps”. A piece of my story weaving into theirs.

I don’t know how to tell you, you should care about Autistic people, but I won’t stop talking about it until people stop leaving.

thanks for staying💕

xx

Phoebe

P.S I want to give a quick shout out to

Gabrielle Ione Hickmon

and

Lexi Merritt

this week for the conversations I’ve had in developing this essay. This took a lot of gumption to put together and I wouldn’t be able to do it with out their cheerleading. 🫶

*typos are left to reflect the fury passion and 3D humaness of being a passionate freak in the world – and you know not a robot *beep boop* I am just a human girlie living on earth with a mortal brain 🤸‍♀️(and also like, don’t be an ableist freak🥰)

Thanks for reading the Weird Girl.Here I write about being an artist, human, angry woman on the internet and breaking up with the wellness industrial complex. If what I say here inspires you (or pisses you off 🥰) share my work with the group chat, or your best friends neighbour. Word of mouth is the most special and radical way of sharing 👼

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4. Milton’s ‘double Empathy Problem

5. Injury Mortality in Individuals With Autism