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Biography of my autistic body

[TW: Sexual violence; eating disorder; mental health; self-harm. Some of the relevant passages have been highlighted, but proceed with caution nonetheless]

A year or two ago, Mary and I were going through one of the autism subreddits. Mary asked me “What is toe walking?”. I explained how some autistic people will walk on their tippy toes. They asked, “Did you ever do that?”. I said no.

It took a few days, maybe a week. One day I was walking home from a lecture when it hit me. A muscle memory. A faint glimmer of regret in my legs. I rose on my toes and they remembered the movement exactly. I did use to toe walk, I did it all the time. It wasn’t just being on my tippy toes either, it was a specific bouncy motion, it was where I looked as I walked, it was the way the ground felt below me. I used to do it, on and off, whenever I went anywhere. Walking home from primary school, I kept my eyes closed almost the whole way as I bounced up and down on my toes. It helped me truly enjoy the ground. I don’t remember ever being told to stop, but I think it happened. I do remember being told I walk weird again and again. Not only did I stop toe walking, I forgot I ever did it.

As I realised this, I was hit with a crushing wave of sadness. I felt like I had lost something precious. I felt something was stolen from me. I wasn’t sure if I could ever truly get it back.

**********

One of my favourite things is seeing videos of myself as a little child. I see a beautiful autistic baby. I’m fascinated by her movements. It’s a child who runs back and forth and swings and digs her hands into the ground. A child who avoids bothersome adults and doesn’t give eye contact unless she wants to. Staring at a book and flapping her hands. Fingers twirling. Moving from leg to leg. Singing songs in gibberish, non-stop. Telling stories to herself that don’t make much sense. It’s a child I feel fond of. A child who I see as recognisably, irrefutably me.

I was a bright, happy child. A child who struggled, who had needs that weren’t recognised or addressed. I child who was fiercely autonomous and unapologetically strange. A shy, nervous, anxious child. A child who persistently did things her own way, who pursued her own interests. A child who had friends, but was never quite like them, and preferred to be alone most of the time. A child who was sensitive, who had emotions that were too big and confusing. A difficult child.

I was a bright, happy child. Until one day I wasn’t.

*****

I have been very lucky in many, many regards. I had a generally happy and calm upbringing. Remarkably absent of violence. I had warm and loving parents. Ones who didn’t always know what they were doing, but who certainly tried their best and who have never harmed me on purpose. I was considered healthy and misjudged as neurotypical and so this shielded me from abusive “therapies”. There was never any structured effort to correct me. I got along decently with other children. The mocking and insults were never consistent or vicious enough to constitute bullying. And controlling my body is an option I have the vast majority of the time. Given the horrors so many of my peers have faced, this is an unusually fortunate autistic childhood.

It’s more a million tiny papercuts, you see. Tiny little pains, the echoes of which I feel in my bones to this day. It was the frustration of having hands and feet that didn’t remember the actions which my mind did. The frustration of being given the same tasks day after day despite having a body seemingly not designed to do them. It was the shame of my flappy “reading” and being told to sit nicely, say hello, use your words. “What are you doing with your hands?”. The look of resignation in the face of every PE teacher about 2 weeks after they first met me. Being terrified of PE. The sight of fast-moving objects hurts me. It was standing on the volleyball court and telling myself “I won’t run away this time, I won’t run away this time”. My body took itself away from the ball every single time. The children from other classes would laugh and scream at me. My friends just sighed and rolled their eyes.

It was knowing that if I get excited, if I get anxious, everyone will see that I don’t move right. Just knowing I’m a particular and concerning type of messy/clumsy. That people will laugh if I try to run or dance. I was a child who just didn’t move as a person ought to move. My hands went on long journeys, exploring the world without my approval or my awareness. Teachers commenting on the ink and grime and me trying consciously to keep my hands clean today. I would never succeed.

It was the pain of a child hearing from a beloved, trusted adult “Just stop acting like a freak”.

I need to move like a person.

******

I was a bright and happy child. Until one day I wasn’t.

It’s a common enough story. I hear it especially often from other autistic women. Puberty is very, very bad. A strange, but ultimately healthy, child turns into something else. Sudden and unexplained mental illness. Did well in school and then she stopped going. Drop in functioning. Et cetera, et cetera.

I was a bright, happy child who became a miserable teenager. Emotionally unstable; hysterical; anxiety disorder; self-harm (both the conventional and the weird kinds); disordered eating; self-neglect; strong irrational fears; school avoidance; dysfunctional relationships; impulsive behaviour; erratic; manic; suicidal ideation; suicidal behaviour; attention-seeking; abuse.

Sometimes I have nightmares where I am 14/15 years old again.

Something happened. Something inexplicable happened when I was 12 to 13. It pained and confused my parents terribly.

Reading through my diagnostic assessments I spotted a pattern. I am not implying causation, but (emphasis added):

“Natasha has definite finger mannerisms (…) As a young child during primary school Natasha appeared oblivious to the fact that other people did not engage in similar behaviour. (…) When she transferred to secondary school, she made more effort to restrict her mannerisms to the privacy of her bedroom.”

“she occasionally used her own unique language which others would not be able to understand. She would do this from infancy up until the end of primary school

******

[TW: This section contains descriptions of self-harm]

It’s a funny thing, masking. Nobody ever told me to do it, nobody ever told me how. You don’t have to think about it after a while. I didn’t use to have any awareness of it. It’s a background process. Day after day after day. The gruelling work of suppression, without the vaguest notion of what it is that you’re suppressing. Pushing and pulling and twisting all day long just to stay composed. But you don’t understand the composed people or what exactly it is that they do.

I have never done a good job of fitting in. A teenager that was confused for non-autistic but never confused for normal. And I don’t think I really wanted to be normal at any point. I never tried to act as a normal person. I tried to act as what I though a person was.

The background process always running, taking up space, heating up. Day after day after day. How much energy and discomfort goes into not moving/talking like a freak. It adds up, the masking machine always on. There’s never a moment of rest, it can never turn off. So the heat rises and rises and rises, and one day it explodes.

A minor inconvenience smashes into me, and I’m sitting outside the classroom, my fingernails digging through my skin. I don’t know what is happening and why. But my hands seek to destroy, and they systematically eradicate layer after layer of skin. I’ve scratched myself raw over many hours, my fingers sticky with blood and various other fluids. And I’m still scratching and I can’t stop (can I? Could I?)

Day after day, exploding constantly. My arms, legs, breasts, neck, shoulders. All covered in burn marks from my fingernails on fire. I tried to hide them at first, but I soon gave up. It’s difficult to miss a child with open wounds all over their body. Large patches of skin missing, I was always oozing from somewhere. You can only hold your hands still for so long. And when they will move, they will move to kill. My hands opened me up, they wrapped around my neck multiple times a day. I would rock back and forth in my room, and I couldn’t stop. I would cry and scream because I thought this meant I was going insane.

I thought masking was meant to make you inconspicuous.

*****

[TW: This section contains descriptions of an eating disorder]

The body must be controlled. It has no voice and it must listen. I have learned that I must not trust what my body tells me. Loud noises are not painful. Flapping is not a need.

No, wearing clothes does not hurt. Crowds do not hurt. Hunger does not hurt.

The body must be restricted. We do not move our hands this way. We do not walk on our toes. I decide when and if we need to eat. And I can decide we eat once a week and once I succeed that’s the proof. The proof I can control it after all.

I’ve twisted and pulled my body parts, frustrated they would never listen to me. My stomach rebelled and refused to do what I asked it to. It was a many-year struggle to mould my body into something acceptable, something predicable, something controllable.

Your body’s reactions don’t matter. How well you control yourself matters. Others’ reactions matter. Whether it’s “stop acting like a freak” or “you look nice, have you lost weight?”.

Comfort is not something that should or can be pursued. Discomfort is normal and good. Discomfort is what happens when you move and talk and act like other people. Like real people. This is what they feel as well, isn’t it? You’re not comfortable, but discomfort is how you become real. Discomfort is what it means to move like a person ought to.

I laid on the floor with the sensation that my stomach was finally caving in. I wondered if I was possibly dying. I did not move, because we don’t do that. Physiology means things we must control. When your body tells you fibres burn your skin, that’s a lie. When your body says it’s hungry, that’s a lie.

*****  

[TW: This section deals with sexual assault]

OK, so this is the part that gets really uncomfortable. It’s not nice to think about, it makes my brain unsettled. But I think it’s relevant to the story of my autistic body. And it’s relevant to many other autistic bodies, I’ve seen the statistics after all.

As a teenager, I was sexually assaulted at least twice. I’ve been processing the Incidents TM through writing and poetry. None of that has felt adequate at any point, but I’m curious about my word choices. Words like “rubber”; “plastic”; “mannequin”; “objects”. I’ve spoken of having my limbs manipulated and arranged, the sense of being carried and dragged from one place to another. I no longer think my body became inorganic because of the rape(s). I think it was this way for a long time before.

The body must be controlled. If I can’t do it, others will.

My discomfort doesn’t matter. I’ve been taught my discomfort doesn’t matter. It doesn’t comply with reality. My body over-reacts. The noises aren’t bad. The eye contact isn’t bad. This isn’t bad. The body is lying.

Your reactions are wrong. It’s the others’ reactions that matter. If they’re laughing, it must be funny. If they’re smiling, that means nothing is wrong. The body must be compliant. It moves how it’s told to move. Body fatalism. Your body has no voice. Things just happen to it.

When a real, normal, person tells you to stop walking funny, you do it. When they tell you to lie back down or undress, you do it. People are touching me. I suppose this is what must happen now. This is what is happening and there’s nothing we could do to stop it. The body is silent and still. I whimper at one point and I slur out that I’m cold, what is happening. My “friends” laugh at me. My mind is not working well and what my body says doesn’t matter. I’ve been told not to trust my body. You’re not in pain, you’re over-reacting. You don’t actually feel this way, you’re just making excuses.

I couldn’t trust my body, so I trusted the laughter. If they’re laughing, then it must be fine. This is fine, I’m fine. Other people are always right. Me and my body are always wrong. Discomfort is normal, so this must be normal too. We don’t say “no” to other people. We can’t escape uncomfortable situations.

The body must be controlled. The body does not belong to me.

*****

When I was diagnosed, they watched and assessed and scored my movements. Of course.

I received an ASD diagnosis. Along with it I received a list of recommendations. The experts recommended that any therapy should target “normalising physiological motor symptoms”.

Normalising. At this point all they could really pin on me was “complex finger mannerisms” and “exaggerated gesturing”. That was all that was visible at this point. I’ve rubbed off and torn and let others’ pickpocket pieces of me. I’ve pushed past the need to feel comfortable, to feel authentic, to listen to my body, for many many years at this point. All that was left was “exaggerated gestures”. And they felt the need to normalise that as well.

Thankfully, the NHS is chronically underfunded (and that is the only time I have ever said that). I never received therapy to “normalise physiological motor symptoms”. But I remember how I felt the first time I saw those words.

I had never heard the terms “stimming” or “masking” or “neurodiversity” at this point. I knew very little about autism, except for the fact that I apparently had it now. But I knew immediately. They wanted to normalise my movement and that was wrong. They wanted to normalise my movements and I felt horribly sad and scared and violated thinking about it. It just didn’t feel right. I didn’t want to be normalised.

*****

I was confused when I started stimming more after my diagnosis. Why are my hands flapping all the time? Why am I rocking and repeating things? This is not the kind of autism I have. What if people see me and think I’m much more disabled than I actually am?

Moving away from home, I started realising how tired I was all the time. I could feel so clearly all the energy it took to act normal all day long. Yes, I do still feel compelled to act “presentable” or “professional” in many situations (and those words mean neurotypical for some reason). I’m certainly lucky to have the ability to perform this. I am not lucky to have to.

Honestly, the last few years I got tired. I feel what I call “happy-angry”. I do care what the neurotypicals think, but I don’t particularly want to care anymore. I can’t always afford to care either.

Fuck you. I’ll move how I want to. I’ll vocalise how I want to. I have the right to feel comfortable. I have the right to exist publicly as an autistic person. I am exactly as autistic and as disabled as I am, as I’ve always been. If you assume I have a learning disability because of the way I move, that’s on you. Whether or not I have a learning disability is none of your goddamn business (Also, please stop speaking this way to people you assume to be learning disabled. They’re neither toddlers nor puppies).

My hands do whatever they want. I let them. Sometimes they decide to slap or hit me. They have their reasons. And they are open to compromise, most of the time. If I can’t stop my hands from hurting me, I know my body is telling me something important.

I flap, and I twist, and I twitch. My hands play invisible pianos. My body will rock when it wants to and it will bump into things. My hands are free to explore. My skin recoils from sticky substances. It despises certain fibres. It will cling to things soft and smooth. My mouth rubs on things it finds pleasant.

My eyes have a direct connection to my feet. When my eyes see something exciting, my legs shift onto my toes. Soap bubbles and pigeons make my body shake, lift, drop, with violent excitement. I squeak and I squeal. I grunt and I point. I stick my tongue out when I’m confused. I repeat words and non-words.

I wonder what the people who diagnosed me would think of me now. I wonder if they’d be horrified how far into the opposite of “normalising” I moved. I wonder if they’d know that I am finally comfortable. My body is finally my own, finally its’ own. I hope they would care about that, although sadly I’m not so certain that they would.

****

This is me:

This is also me:

Everything in between was a lie and a tragedy.

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We need to retire the word (in)appropriate from descriptions of autism

What does “inappropriate” make you think of? When a person is fired for “inappropriate workplace behaviour” what do you assume they did?

My working definition of inappropriateness would be centred around the idea harm. Inappropriate behaviour puts yourself and/or others at risk. It makes someone experience discomfort, sadness, pain, fear. Threatening others is inappropriate. Sexual behaviour towards, or in the vicinity of, non-consenting people is inappropriate. Racism, sexism, homophobia, and transphobia are inappropriate. Swearing at someone; being insulting; ignoring people’s personal space or boundaries.

What about “inappropriate play”? How does a child play inappropriately?

Are they re-enacting a Klan rally with their action figures? Are they hurling heavy toys at their classmates? Does their play feature explicit sexual and violent themes and is conducted in a space shared with others, who may feel uncomfortable, upset, afraid?

When discussing autistic children, that is not usually what people mean. They mean ordering toys in rows. They mean playing on your own instead of in groups. They mean spinning the wheels of your toy car (and thus neglecting the only appropriate mode of play with toy cars: saying “vroom vroom”).

That is to say, ways of playing that are normal and common for autistic children are inherently deemed inappropriate. Nothing irks me more than seeing that phrase used when describing autistic traits or individual autistic children. How on Earth is this inappropriate? I can’t think of something more harmless and less offensive than a child quietly lining up building blocks. And yet, here we go again. Another child gets behavioural therapy to make him roll a car around and say “vroom vroom” (a skill that is truly crucial for survival). A child is “gently redirected” from their preferred activity during free time. A professional expresses Concern ™ about a child’s non-functional play.

(Play is by definition voluntary, pleasurable, and non-functional. When you make a child play in an approved way, they are not really playing. They’re working)

Of course, autistic people are capable of engaging in truly inappropriate behaviour. Everybody is. And we can have difficulties judging how our actions impact others, recognising neurotypicals’ emotions. We can lack a speech filter. Of course it’s fine, and needed, to recognise and respond to inappropriate behaviour. “It makes me sad when you call me ugly”; “When you scream out swear words, people think you’re gonna hurt them.”; “Don’t ask me about my sex life. I do not like it”.

But then that same vocabulary, and subsequently the same treatment, is applied to perfectly common and harmless autistic behaviours. True inappropriate behaviour is equated to stimming, echolalia, pronoun reversal, special interests, “ritualised and non-functional” behaviour. Normal autistic behaviour is inappropriate and so it needs to be responded to as such. Inappropriate, and so your weirdness is actually a moral failing.

Behaviours have purpose. Autistic behaviours have purpose, they have value. Lining up toys is a great way to learn about relationships between objects. You can practice your skills in naming, counting, sorting by colour, sorting by size. Echolalia, and other “non-functional” “inappropriate” forms of speech, can be a great creative outlet. They let you experiment with and learn about language. They may be the most comfortable, easiest, most fun form of communication. Our “inappropriate” behaviours can feel good; they can help us relax and recharge; they play an important role in self-regulation.

You miss all that when you pre-emptively label a behaviour inappropriate. When you don’t stop and think: “Why are they doing it?”; “Why do I stop it?”; “How big a deal is it after all?”. Maybe you do need weather-appropriate clothes to avoid a heat stroke or frostbite. But do you actually need age-appropriate clothes? When you say “appropriate to situation” do you mean “high heels at a construction site could cause an injury” or do you mean “this funky jumper may cause some glances at a fancy restaurant”? And think about the consequences. Should avoiding judgment or upholding social conventions really come at a cost of making someone uncomfortable, denying someone agency, taking away their uniqueness and their forms of self-expression? Should a person really need to hear that what they’re doing is wrong, that they are wrong?

(A neurotypical asks virtual strangers what jobs they do and how many kids they have. This is functional appropriate speech. An autistic asks people what’s their favourite train. This is not.)

What makes me so frustrated is that we do have perfectly good, accurate, and commonly used words to describe autistic behaviour. “Different”; “(un)usual”; “(un)conventional”. It’s so simple. “Unconventional way of playing”; “A difference in speech styles”; “Unusual clothing”. I don’t think retiring (in)appropriateness would necessarily change the mindset behind it. But at least “different” and “unusual” are more objective descriptors that do not ascribe value to a behaviour. They are a good neutral starting point. And I hope someone thinks a little longer before trying to change a “different behaviour” as opposed to an “inappropriate” one.

And I hope a child who is different doesn’t grow up believing they’re inappropriate.

****

Here’s an example of inappropriate play and an inappropriate attachment to objects by an autistic child:

[Image description: A photograph of a white female child with brown hair (the author as a child) standing on a cobbled city street at night-time. She’s holding a large wood plank in front of her face and holding the hand of an off-camera adult]

Here’s an example of age-inappropriate interest and inappropriate attachment to objects in an autistic adult:

[Image description: A photograph of a young white woman with brown hair and glasses (the author) sitting on a bed. She’s smiling and embracing several stuffed animals]

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Within self

Autism, from Greek auto (“self”) literally meaning “within self”.

(or not, I’m not an etymology person, I’m sure there’s a lively discussion about the translation somewhere in the word community)

I know it was originally used for schizophrenia, that most early descriptions of autism are innacurate and wrongful, that it probably wasn’t intended as a positive. I still just really like the meaning.

Cursory research tells me that most languages use words derived in some way from that “aut-” root. There are a few notable exceptions, which I also find quite neat. Icelandic einhverfa loosely translated to “disappear into one(self)”. Maori word for autism, which was constructed a few years ago, is takiwātanga, meaning “in their own space and time”.

And I don’t know, I just really love it. The words, the concept. “Within self”. Kind of strikes a chord. I find it both hauntingly beautiful and very relevant to my experience.

(How do neurotypicals think? How do other autistics? Is any of this new? I have been asked “How does your mind work?”. I don’t know, I’ve never had any other?)

“Within self” reminds me of something I’ve been described as as a child. “In her own (little) world”. It’s a phrase that comes up 5 or 6 times in my diagnostic reports. Or else “seemingly oblivious (to the world around her)”. Or “on her own agenda”; “doing her own thing”.

Did they mean it euphemistically? To me it seems broadly positive. It sounds pretty, it sounds cute. You hear of a child in their own little world and you think “that’s a sweet kid”.

(Until they’re diagnosed with the “in their own little world disease”. Until they move in a way that makes you uncomfortable. Until they choose their own agenda over your arbitrary instructions)

The self is not (needs not be) a bad place to exist in. The self can be pleasant, comforting, safe. I live within myself more than anyplace else. I look at the world from behind a thick lens of self. I venture outside to explore or when I need to, but I always retreat back within. I find it difficult to look too far out. I find it difficult to care.

Within self does not mean trapped.

The outside is too big and too bright. That does not mean it has no value to me or that I don’t have places I want to go. But I want and need my inside time. I want to choose what and when to bring in.

But I must leave the self. I must endure the constant assault of stimuli and stimulation. I am demanded to communicate. I am forced to interact. I will look like I’m “listening” or “participating” or “doing”. I will repress any reminders that there’s somewhere I’d rather be. I will remember that the phone is important in a way that a blade of grass, the floor tiles, my own hands, are not.

I will sit on my bed, in my bedroom, crying. The outside will scream its’ concerns in my face. I will scream “I want to go home, I want to go home!”. Mary will squeeze my hands and remind me I’m allowed to go.

Self-centred does not mean selfish.

We need to rescue the “within self” child. We need to draw him out. We need to barge in. We need to expand the world onto him. We need to constrict his self. We need to pathologize his experiences until he no longer feels safe there.

If you’re not communicating or interacting with me, then you’re not communicating or interacting at all. If I don’t know what you’re doing, then you’re doing nothing. I don’t know what it’s like within yourself, so I assume you are empty; your world has no meaning or value. You need to live in the real world (and by “real”, of course, we mean neurotypical).

And we will work tirelessly until you come outside.

(As long, if course, as you do it in a way, time, and for reasons that we approve of. We will not acknowledge it any other way.)

The (autistic) self is rich and valuable

My mind is full with meaning. It is endlessly creative, expressive, entertaining. Always waiting, imagining, list-making, pattern spotting. My mind is a good place to be. Always watchful, observing without the need for explaining, or speaking, or comprehending. My senses create captivating movies, which keep me occupied for hours. My mind experiences deeply, viscerally, in ways that confuse others. But it’s not for them.

My aunt used to tell people not to talk to me. I’d sit there “reading”, or flapping, or lay on the ground watching ants. “She’s doing her own thing. Leave her alone”.

I want to do that for all my smaller peers. I get so excited seeing the children, stimming and chattering to themselves; commuting with objects; writing down slogans from detergent commercials. I get so angry seeing people rushing to disrupt them; to forcibly save them; remove them from themselves; express Concern ™ about their unusual tone and pitch. I want to say:

“She’s doing something meaningful. She’s enjoying herself. She will come to you when she’s ready, in her own way, if you’re just willing to listen.

Leave her alone.”

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Vignettes on functioning: Why I don’t like functioning labels

Functioning means “how well you do”. It is not an answer, it is a line of questions. How well you do what? How well you do when? How well you do in which circumstances, in which environments, with which people? Who decides what well means? Who decides which doing matters and which doesn’t? How do you measure well? Who do you measure against? Why are you measuring at all?

Why do you need to know?

 ******

“High-functioning though?”

A person asks me. I hear that rather often. Or else:

“So, like Asperger’s?”

I say no, not really. That’s not how I would describe myself. They contrast the image they have of me with the one they have of others. They say:

“When people say autistic they don’t usually mean people like you.”

A woman has said:

“People hear autistic and they think you hit your head on the wall.”

I say

“I do do that, actually!”

*****

Mary and I go to enjoy the outside world. I can usually last about one hour or about two separate shops. I get confused after prolonged outside. I process slowly. I am dysregulated. My mask slips.

We meet a group of people with a dog and we pet. I sit down on the floor. I slap my face and stomp my feet. I am not unhappy, but I need my time. My hands move quickly past my eyes and I laugh. I look up to the sky and try to construct a picture of what’s happening.

“She’s a little confused right now,” says Mary

“That’s ok. I used to work with special needs kids.”

I rock quicker and I clap my hands. I say:

“Eeeeee!”

Mary knows what to do and explains what I do for a living and what I do for volunteering. They explain I’m excited. I look at the dog and try to focus. I can no longer hold onto the people’s words. I try to hold onto my own. The dog means something. I try to find out what I mean.

“Lizard, lizard, lizard!”

“We have a bearded dragon at home,” translates Mary.

They’re interested. I search for my phone to get a lizard picture out. I can’t remember how my phone works. I try to unlock it and I get frustrated.

“Ah-ah!”

I reach out my phone to Mary. They unlock it and pass it back to me. I squeeze their hand in thanks. Then I bite it.

“Ouch!” they inform me.

I punch my chest in a vague approximation of the “sorry” sign. I can’t quite get more words, so I focus on the dog for a bit. I pet. I flap.

Later, me and Mary are having coffee. I say:

“Do you think they thought I’m high functioning?”

Mary laughs.

 I ask:

“Do you think they believed I have a job?”

*******

I have been paid before to support Chris*. A woman who worked with me remarked that Chris could not possibly have mental capacity. He couldn’t because he’s not living independently, he needs support every day.

I don’t think she knows I cannot live independently either. I need substantial support every day.

I have been paid to support Chris. Chris has a learning disability. I do not. He plans and prepares all of his own meals. I do not. Chris regularly takes a bus to towns an hour or more away. He can do this spontaneously; he visits places he has not been to before. I need Mary to show me the way back home from Tesco’s down the road. Chris does simple repairs in his house. Yesterday after work, I could not figure out how to open my front door.

Which one of us is high-functioning?

****

There are apparently two flavours of autism. Mild and severe. High and low.

Two types. All of us. All the time. Either or.

Fundamentally different. Cannot understand the other type. Cannot speak of it.

I need to let you know you are not like THEM…

(but I don’t actually believe you’re like us either)

 ******

I was a gifted child. An intelligent child. An able child. Exceptional (though highly selective) memory. Memorised entire plays. (But why can’t she remember the multiplication table after five years?) Her essays are better than any of the native English speakers in my class. (How come you still can’t tie your shoes?)

A 500-word assignment. I know it’s not complex in the slightest. Could easily pass it by slightly rephrasing the lecture slides.

500 words. I had written thousands in the span of a few hours before.

It has been weeks. Mary sits with me to work every day. They construct coherent sentences from my single word answers. I’m crying and screaming. Mary calms me down. “What are you trying to say?”. I don’t know, I don’t know what I’m saying. Mary shows me a semi-completed paragraph we’ve written. I read it. I can’t understand it.

500 words. Weeks of work, spending hours on every sentence. Every word is an achievement, every word is painful to produce. I need somebody to collect the bare ideas, to structure my single words into sentences, sentences into paragraphs. I need somebody to do all the editing. I need to re-read everything several times to understand anything.

If you knew a child who completed schoolwork this way, how would you classify their functioning?

*******

It’s not a compliment.

“You don’t look autistic”

“I couldn’t even tell”

I would rather not be judged by how good of an approximation of a neurotypical I am. I would rather not have my value derived from my masking.

When you say high-functioning as a compliment, you mean I could pass for neurotypical. You assume it comes naturally. You assume neurotypical is good. You assume the closer to neurotypical the better. You assume it’s something to aim for.

You know that thing you do? That thing where you need to pretend to be someone you’re not so I take you seriously? That thing when you need to make yourself uncomfortable to be allowed in a public space? That thing when you internalise all the awful things you’ve heard about people like yourself? That thing when you’re ashamed of who you are? That thing when you supress all your natural behaviour and exhaust yourself trying to behave like me instead? That thing when you slowly kill yourself trying to perform, when you work yourself to death trying to someday reach normal?

Yeah, I like that thing, let’s keep that up.

(If high-functioning is a compliment, what do you mean by low-functioning?)

I would rather not be judged in contrast to the image you have of other autistics. I would rather my value not come from how unlike them you think I am.

When you call me high-functioning as a compliment, that lets me know what you think about my peers.

You class me as unlike you, but not too much unlike. You class me as uncomfortable, but not too uncomfortable. You class me as more like you than like them. When you say low-functioning you assume I would share those assumptions. You assume I look at a “severely autistic” person and do not see myself.

*****

When autistics talk about functioning labels we often say:

“High-functioning is used to deny support. Low-functioning is used to deny agency.”

 ******     

I met Emily* when she was 11. We would have back-and-forth conversations. Emily asked and answered questions. She requested, she complained, she commented. She joked. She lied.

At 10 Emily was fully non-speaking.

A child learned a new skill. That’s great, that’s common, that’s normal. We’re all capable of learning.

The autism did not change. The child did not graduate from low to medium or high. The child is not a fundamentally different child. The child did not suddenly become the other autism flavour. The child remains.

Functioning remains subject-specific, it remains subject to change, it remains not everything.

******

In sixth form I used to go to every university lecture I was able to get to. I bought and read textbooks for fun. I printed out and read research papers during my breaks. One day, I had gone to a lecture on reactive aggression in children. I had read about the topic and the lecturer beforehand. I took meticulous notes. I understood all the difficult words, all the technical terms. I had performed well. I am high-functioning.

Mary walks me to the bus stop afterwards. A man comes up to talk to them. He takes one look at me and turns back to Mary:

“She’s a little slow, isn’t she?”

 *******

Why do we need the functioning labels? What does such a label tell you?

Of course, I’ve heard that we need them to meet people’s needs better. Do we all need to know everybody’s every need at all time?

(I’ve been presumed to be a low-functioning autist. I know how people treat me when they think I have a learning disability. I know how people talk to and (mostly) about me when I am non-speaking. I know how people look at me when I’m visibly, obviously, irrefutably disabled. I don’t think they’re trying to consider my needs.)

When I support a disabled person, “high-functioning/low-functioning” or even “high support needs/low support needs” are descriptors that tell me very little. Notice that they do not say “how”, they do not say “what”. They only attempt to say, “how much”.

There are people who need someone there for safety reasons or “just in case”, but that doesn’t necessarily mean their support needs are greater. Perhaps they simply need someone present in their vicinity, but they do not need active support all the time. Others may need only a few hours of support every now and then, but that support will be intensive. If I’m going to support someone, I don’t know what to do based on a functioning label. All my experiences with everyone termed “mild” or “severe” have been drastically different. If I’m to know what to do I need to know the person, know about the person, listen to the person.

If you need to support an autistic, whether professionally or as a friend, acquaintance, family member, colleague, or supervisor, and you only use a functioning label to guide you, you will be inefficient, you will be inaccurate. You are being lazy (and probably hurtful) if you treat a person a certain way just because they are “low-functioning”.

If you have other, more extensive, more nuanced, more specific information, why would you need a functioning label?

******

Sam* is a non-speaking autistic. He has a support worker with him for the majority of the day. Sam’s house is clean and tidy. Sam enjoys his routine, he enjoys all his chores completed in the right way, the right time. If he is able to do a task, he will remember it and do it. If he’s unable to do a task, he will remember and request someone to do it. He will manage and supervise his staff.

I’ve heard people describe Sam as low-functioning. I’ve heard people describe me as high-functioning. If my functioning is so much higher, how come the vast majority of the time I cannot do the things that Sam does every day?

******

A person does not use speech, PECS, sign. This means they are low-functioning. This means they do not need to be offered a tablet, a keyboard, a letterboard. They would not understand them anyway.

A child does not comply with instructions. This means they don’t understand them.

A man does not engage with an intelligence measure. This means he has a severe learning disability. He does not need access to a high-quality education. He does not need to be given choices.

A woman does not complete a task. This means she is unable to. This means we can stop trying. This means we do not need to adapt it; we do not need to try different tasks. She is too low-functioning.

*****

A colleague walks in while I’m supporting an autistic woman. Low-functioning. A woman “unable to participate in most tasks”. The colleague watches as she and I put away clean dishes together.

“She’d never do something like that with me!”

Did you try?

*****

I go to work. I support developmentally disabled adults. I cook their food if they’re unable to do that. I do their laundry; I mop their floor. I walk them to the grocery store. I help them through their anxiety, anger, frustration.

I get home. Mary supports me, a developmentally disabled adult. They cook my food, because I’m unable. They do the laundry; they mop the floor. They walk me to the grocery store. I get paid 8 pounds-something an hour. Mary definitely does not. I get home at 22:30 at latest. Mary stays up till 5 am to help me through a meltdown before getting up at 7:30 for their real job.

This is high-functioning autism. This is independent living. This is low support needs.

******        

Functioning is not a word. It’s not a sentence. It’s not even a paragraph. Functioning requires a lifetime of context, it requires testing and experimenting, it requires caveats and exceptions and constant amending. Functioning is not something you can capture in a single phrase.

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Not suffering, thank you very much

[TW: Mental health/Mention of suicide]

A pre-diagnosis acquaintance reaches out to me. “How are you?” they say. “I’m autistic now! That’s new!” I respond, partly because I assume that’s how small talk works, partly because I’m curious whether they’re in the “Oh… That explains it” camp or the “No, you’re not” camp of pre-diagnosis people.

“Oh. Are you doing well, though? As well as you can, I mean, given your condition”

Well, that was a first. A first time someone verbalised it at least. It’s usually the post-diagnosis people. It’s usually just a mildly sympathetic look, a certain gentleness in their voice. Just an “Oh”. When I find out someone is autistic, I do an “Oh! Oh! Oh!”. I will point to them and to me, back and forth, and flap excitedly.  I say, “That’s so cool!”

I’m doing research for a uni assessment. It’s not about autism, but it is about social cognition, so there’s bound to be autism there somehow. They like to use us as a sort of reverse control group. “We think it may work this way in normal people, because when we compare it to ADS it doesn’t work”. I find a study on autistic children which I think may be helpful, so I go to read the abstract.

“… suffering from autism”

“…the severity of the disease”

I am not suffering.

I do suffer, we all do. But I’m not suffering now. I am suffering at some moments. But I’m not suffering permanently. I struggle with things, but I enjoy things as well. My life is hard, but it is not suffering. I am not in pain solely by existing. We are not inherently suffering. We are not doomed.

Some people agree with me. Or rather they agree with the “not suffering” part, because I said it in written or spoken language. Writing or speech, at least as long as they deem it “eloquent” or “functional”, means you’re not facing difficulties. Your pain is basically the same as a normal person’s. You have it “mild enough”. You’re not really “that affected”.

BUT, they will say, it was not me at all they were talking about. When they say, “autism sufferers”, they mean the ones I’m not thinking about. You see, I did not consider those who are “not as high-functioning”. Those “severely impaired”. Those who “can’t talk or work or do things like you”. Those people “who may never really live independently, can you imagine?”

(I cannot live independently either. I guess that doesn’t matter. The only true measure of independence or functioning is whether you can communicate using speech)

If you’re able to express an opinion in a way neurotypicals will understand, then your opinion may, could, possibly does, matter. But only so far as you are concerned. You see, you are normal enough to speak, so I guess you can tell me what life’s like for you. But you are not normal enough to relate to others, your empathy is still impaired. So, leave it to the neurotypicals to consider the plight of those poor, poor people with “severe autism”. The little children who really “need a cure”

(You understand autism is suffering, because you’ve seen a meltdown once. I could not possibly understand that some people’s behaviour is just so EXTREME. Some people are really DIFFICULT TO MANAGE. Some people will HURT THEMSELVES. You are certain that anyone who acts like THAT could never possibly have a fulfilling or meaningful life. When you are that IMPAIRED, you cannot do ANYTHING. You hear me use my mouth to speak. You think this means I do not have bumps on my head from when I smashed it repeatedly against the wall. You hear me say autism is not suffering. You think this means I’ve never comforted a child through a meltdown)

                                                 ****

I spoke to a new person the other week. It was a nice and prolonged conversation, which is not a common combination. Georgia* was lovely, because she seemed a little more straight-forward than most. She looked me in the eye and asked, “Are you diagnosed with anxiety?”. I adored that.

We discussed autism. Georgia enjoyed learning; she was fascinated to learn how different we all are, how we’re not all like the favourite media image of an autistic.

 (Seven-year old, white, male, non-speaking, math genius. The perfect little guy to teach main characters tolerance)

 In a moment of silence, Georgia looks over at Jenny* and says:

“You know, I always hear people feeling sorry for people like her. Look at her, though!”

Jenny looks cosy with her blanket and her special object to stim with. She looks over to us and vocalizes for a bit, she smiles. Jenny is a non-speaking autistic. She needs support in every area of her life. Jenny does not react to potential hazards around her. She needs someone to be with her every moment of every day to protect her from danger. I know some neurotypicals (and some autists) who would describe Jenny as “severe” or “low-functioning”.

Jenny’s one of the coolest people I know. I absolutely adore spending time with her, it makes my week when we get to hang out together. I would describe her as cheerful, chill, sociable, flexible. Jenny likes spending time with people and she likes spending time with herself. She enjoys her special objects, and food, and sports, and travel, and nature, and all the wonderful sensory things in the world. She enjoys loudly and thoroughly. She enjoys often. I can hear Jenny’s excitement from anywhere in the building.

I’m very conscious at this moment of certain stereotypes I often hear about learning disability (less often about autism). I am not suggesting Jenny is “always happy”. Of course, she experiences a full range of human emotions. She is not thrilled to be hungry or sick, she will wake up grumpy every now and then, like everyone. Neither am I suggesting that Jenny’s cheerfulness is somehow specific to learning disability. Jenny is not happy because she’s so “pure” or “innocent”. She’s not happy because she’s disabled any more than she’s happy in spite of being disabled. She has a cheerful disposition. I’ve met a few neurotypicals as cheerful as Jenny. And I’ve met many autistic people, including myself, who were nowhere near her level of cheerfulness.  

I know Jenny reasonably well. Georgia has only met her once before. We cannot know for sure what Jenny’s subjective experiences are, we don’t know what she thinks about her life. But neither of us think that “suffering” is a fair categorization of her entire existence.

                                                     *****

You may argue that I can’t know for sure whether a non-speaking autistic person is suffering. You would be right, I cannot. I also cannot know for sure whether a speaking person is suffering. All I can do is listen to them and believe them. I can ask people how they’re feeling. I can listen for and understand the difference between a happy and an unhappy “uh-huh”. I can understand a smile, an expression of pain. I can understand throwing objects and punches. I can understand jumping up and down when your favourite song comes on. None of these things are infallible indicators. But neither is saying “I am (not) happy”.

I can’t generalise from those moments to somebody’s entire life. Neither should you assume that extreme distress at the moment means a lifetime of suffering.

If I can’t make an assumption that somebody is not suffering, why can you assume they are? Why is the assumption of pain more correct? How could it be more helpful to them?

Then again, I am assuming that the actual feelings or perceptions of disabled people matter. I’m not so sure they really do here. Many neurotypicals will exaggerate or misrepresent our suffering, whilst at the same time pathologizing our joy. A meltdown shows there’s something wrong with you. So does self-harm. So do difficulties in communication. And so do happy stims, and special interests (“perseveration”; “obsessions”), and a strong attachment to your favourite blanket.

Let’s imagine Child A and Child B. They’re both autistic, both non-speaking, they both need equal levels of care and support.

Child A sits under a desk with his building blocks. He smiles and flaps as he orders them in rows. Every now and then he will knock his blocks down, or throw one across the room, or put it in his mouth. This delights him so much he needs to do a victory lap. He will jump up and down and he will giggle to himself.

Child B is crying and screaming. He slaps himself across the face. He scratches himself up and pulls out his own hair. He lashes out on anyone who comes near. He kicks and bites. He constantly tries to escape the room.

Let’s even say that these behaviours are typical of these two children. That they both do this, exactly like that, for the majority of the day, every day. Do you really believe Child A would be excluded from the group of “autism sufferers”? Do you think Child A would be seen as “not severe”?

I don’t.

                                                   ******

Everybody suffers. All of us. Autistic and allistic people alike. We all can get sick, we all die. We’re all capable of sadness, and anger, and frustration. We all can have bad things happen in our lives, we all can develop mental health difficulties.

Why would our suffering be more fundamental, more stable, more intrinsic than yours? Even if we truly are suffering right now, why would you assume this can’t change? Why would you assume we will be still suffering if our circumstances changed for the better, if we developed a new skill, if we made a new friend or discovered a new hobby, if our pain was recognised and treated? Are you assuming those things can’t happen for us?

Autistic people may experience suffering differently. We may show it in different ways, we may feel it more strongly in certain circumstances, we may suffer from things that most people typically don’t.

We are more likely to suffer from abuse and discrimination. We are more likely to be denied the right to a comprehensive education, to experience institutionalisation, to be a victim of deeply unethical and harmful medical interventions. We may have needs that go unmet. We may not have access to the accommodations we desperately need. We are subject to constant, unsolicited, and often inaccurate, judgments about our behaviour, our abilities, our functioning level, our future.

But it’s “suffering from autism” not “suffering from ableism”. You see, it’s not our fault, we wouldn’t be ableist if you weren’t here. It’s you who needs to change, not society. Wouldn’t it be so much easier if there were less of you, at least those of you who are suffering from our actions the most?

Autistic people may suffer in ways you may not understand. We may experience difficulties you’re not familiar with. I have suffered more over a lost phone charger than some people have over breakups. I have cried for many hours because it was raining outside. You may not relate to that; it may seem unreasonable. Maybe you only cry rationally, like when a fictional character dies in a TV show.  Does it necessarily mean my suffering is stronger, more pervasive, more inherent to who I am than yours? Is a life full of challenges always a life of eternal suffering?

Sometimes I suffer because of things directly related to my neurology. My sensory processing means that I suffer from loud noises, from my clothes touching me, from seeing an object moving too fast. But isn’t your suffering tied to your neurology as well? How could you suffer without a brain? Maybe you feel bored when I talk about tarantulas for fifty minutes straight. Maybe it’s harder for you to spot patterns and that makes you frustrated. Aren’t you only suffering in this way because your brain doesn’t work like mine?

Does that mean you are a “neurotypicality sufferer?”

                                                  *****

I want to acknowledge here that the “suffering” mantra is not just limited to neurotypicals. I have absolutely heard autistics say similar things. I have heard people say, “I’m suffering from autism”; “I hate being autistic”; “If there was a cure, I would take it”.

I don’t want to dismiss that suffering; I don’t want to ever tell anyone that their feelings don’t matter. I’m not gonna tell you that you should feel proud and happy. I’m not gonna say “But a cure will make you a different person”, which perhaps you don’t even believe. I think that only matters anyway if you like who you are. Maybe you don’t and that’s ok as well. I certainly haven’t always liked who I was. I’m not gonna tell you that all your problems would go away if you had access to enough support and accommodations. I don’t know that. I think most disabled people’s lives would greatly improve if society was built as much for us as it is for neurotypicals. But maybe not all of us. Certainly, there are issues that even a perfect society wouldn’t fix. Besides, when you are suffering, waiting for a non-ableist society is about as helpful as waiting for a cure.

A lot of the reasons autistic people cite for hating their autism are things I can deeply relate to, now or at some point in the past. I am not suffering, I am quite happy with my life. But I could easily make a case otherwise. I feel anxiety every waking moment (and I suspect while I’m asleep as well, given the contents of my dreams). Some days it’s only a faint glimmer under the surface. Some days it’s so debilitating I can’t leave my house. Sometimes those days turn into weeks or months. I have been profoundly lonely, disconnected from my peers, never quite belonging anywhere. I worry that I will never be able to achieve the things I want. I often think I am a burden to people around me. I am unable to complete simple tasks and it does make me feel frustrated, worthless.

If I say, “my life is not suffering” and you can’t relate, believe me that I can relate to that lack of relating.

I will not say it gets better, because I couldn’t possibly know that. But I would say that it can, sometimes. I am happy now, I feel like my life is valuable and has meaning. It didn’t use to. The autism didn’t change. I will not say this applies to you as well, I couldn’t possibly know that. I will not say you need to change, I will not say you need to hate yourself less and then everything will be better, because I’ve heard all of that and it sucked. Honestly, a lot of what changed for me was circumstances outside of my control. I will suggest that self-acceptance is great for you and would recommend trying to work towards it (if you are ready).

But I will also never agree that your suffering is inherent to who you are. I will never agree that you will be suffering forever, for as long as you are autistic. I will never agree that research on a “cure” is your only hope. I will not agree, because I do not believe that, and because I believe that these beliefs are hurting you, and me, and others like us.

I have been through some dark times. I believed that my entire existence was pain. I believed that I would always be suffering. I believed that this suffering was inherent to me, that I was wrong somehow. I felt so strongly that there was something different about my brain. That something was deeply, irreparably, fundamentally broken, and I felt this was the reason I suffered so much and always will.

The difference was that throughout the worst of my depression I was undiagnosed. When I thought those things about myself, nobody agreed with me. I did not hear that I was doomed to suffer and bring suffering to all those around me. I did not hear that my suffering was rooted in who I was as a person. I did not hear that I had a serious, incurable disease, which was causing my pain. I did not hear that we need prenatal screenings to prevent people like me from being born.

I wonder what if I had heard that. I wonder if I would still be here.

*Names and details changed

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I am not with, I do not have: Person-First Language rant

  1. What’s the deal?

Person-First Language is a movement, a linguistic tradition, a sort of “disability language etiquette”. At least as far as your sentence is concerned, Person-First means putting the person first, disability second. The basic principle:

“Disabled person” = bad

“Person with disability” = good.

You emphasize that people are people; disability is something you have, not something you are. A feature, not an identity. See the able not the label, and so forth.

The assumption is that it’s more respectful. Honours individuality. More polite. It’s rarely malicious. In fact, it seems at times to be aggressively anti-malicious, proposing itself to be a tool for fighting ableism and prejudice. I recognise it’s usually well-meaning. I also recognise that Person-First Language originates from a very different time when it comes to the disability rights movement, certainly a very different time for autism rights. Often their lists of “acceptable” or “respectful” Person-First terminology are contrasted with literal slurs. And yes, “person with disability” is a better choice than the “r-word”. Obviously. The thing is, it’s not the only two choices I have now.

To be honest, I don’t know much about the history of Person-First. I’m not too sure of the when and the who and the why. I do know where I run into it nowadays. The websites guiding you through the “proper” way of talking about us. Their names usually involve “family”; “classroom”; “HR”; “healthcare”; “parenting”. I have a pretty clear sense of who they’re written for and who they’re written by. It’s usually not me or people like me.

So, apparently Person-First language is Controversial™ within the Community™. There’s a debate about Person-First vs. Identity-First, even more heated when it comes to autism. One of my main questions at this point would probably be “Which community?”. Because often when they refer to the pro Person-First side of the debate they mean parents of autistic children, various professionals, and miscellaneous Autism Awareness types. I have personally never met an autistic person who was ride-or-die for Person-First Language. Not saying they don’t exist, I’m sure there are plenty of them, and maybe it just never comes up in conversations, maybe I’m looking in the wrong places. I’m sure I’d find a think-piece on it if I searched. I’ve seen enough “Why I don’t use Person-First Language” blog posts by this point it feels quite pointless to write this one at all (but I will, because I’m quite annoyed).

To be clear, I would never hold it against anyone if they preferred to use Person-First for themselves. I’m definitely an Identity-First kinda gal, and I do have strong opinions, and I talk about my reasons A LOT. But how other people identify is not my business and I will always refer to everybody however they want to be referred to. If you say you have autism or have another disability, that’s fair, that’s valid, and I believe you. I’m not offended by other people talking about themselves in a way I wouldn’t. But I don’t think Person-First should be the default and I would like others to consider why I, and many of my peers, dislike it.

And please, for the love of God, don’t try to tell me that the way I describe myself is offensive.

2. The war against labels   

Adjectives are words that describe people, places, and things. “Autistic” and “disabled” are adjectives and so are “green” and “kind” and “narrow” and “sour” and “lovely” and “expansive”. I like adjectives. They’re my favourite part of speech as a descriptive person (a person who describes; a person with description). They help us explore and analyse the world, find out what things are like. They make nouns more vivid.

The reason “autistic” goes before “person” is that this is how adjectives work in English. An adjective is not malicious. It does not aim to take over its noun, it is not there to compete. The adjective compliments the noun, it creates a fuller picture.

I can’t help but to feel some sympathy pains for my autism adjectives. I feel like most others do not have a war waged against them. Most adjectives are not denied their purpose of describing nouns. Most are not banished to the ends of sentences or exiled out of them all together. Most are left free to frolic in the speech meadows, acknowledged as valuable parts of the linguistic ecosystem. Most are allowed to rest in their usual spot within sentences or explore new places they could fit.

I am a brown-haired girl. Nobody corrects me to “person with brown hair”.

Labels are harmful. Labels create a negative image. Labels are for clothes. See the able, not the label. I’ve seen people say, “I do not use labels”. (Ironically sometimes the same people who use functioning labels, but that’s a different rant)

I sincerely doubt you don’t. Language with no labels would be highly unusual and neurotypicals seem to have a great concern with typical speech patterns. All adjectives are labels, as are many nouns. A huge proportion of language all together. Labels are useful. They help us make sense of the world. They help identify, distinguish, analyse, designate. “Who?”; “What?”; “Which?”; “Why?”; “What is that like?”. Is description and definition by itself harmful? We can all be described and defined by an infinite number of things. “Tall” and “doctor” and “German” and “clever” and “shy” and “student” and “fashionable” and yes, even “person” by itself.

I am an animal lover. Nobody is concerned with letting this define me.

I know words aren’t neutral. I guess I would hope that the worst thing an adjective can be is inaccurate. But labels are what you put into them; you can thoroughly infuse them with your own values. “Librarian” may be neutral, but not to a librarian’s ex-lover.  In a society where homosexuality is criminalised, “gay” may be about the worst label you can get. I know.

There’s “naughty” adjectives and “bad” labels. There’s “cruel” and “selfish” and “war criminal”. There are words you should never want to describe people with. There’s “ugly” and “stupid” and “deviant” and, of course, the assorted slurs. I can understand why you’d want to separate people from those labels, put as much space between the descriptor and the person as possible, break the sentence itself to disassociate them.

Are “autistic” and “disabled” words like that?

Should they be?

3. I am not with, I do not have: Identity-First

I guess my main annoyance with Person-First Language is that, in an effort to be respectful to me, it describes me in a way that does not apply to me. At its core is an assumption that autism or disability are descriptors that are unimportant, peripheral, or both. And that’s just not my experience.

Autism is not something I “have” or something I’m “with”. It’s at the very core of my being. I am not just a neurotypical with some autism sprinkled on top. “Have” and “with” suggest separateness or transience or both. But I AM autistic. I always have and always will be. Most descriptors of a person may change throughout their lifetime. I am a brown-haired girl, but I may shave or dye my hair tomorrow. I am an animal-lover, but if I’m a victim of a horrifying multi-species animal attack tomorrow, I perhaps won’t be anymore. Unless I die, I WILL be autistic tomorrow.

Yes, I am many things beside autistic. No physical being or thing has only one attribute. But if I were to make a list of descriptors of myself, autism would be ranked towards the top for importance. Autism is central to my personhood. Autism is a brain difference and the brain IS the person. Autistic brains make autistic people. Autism affects how I think, communicate, perceive, process, feel, interact, and experience. You may recognise those things as the majority of what makes a person a person.

I’m trying to focus here on my own experiences, mostly because I don’t feel like doing a bunch of research and citing sources (tried, couldn’t, tired). But I do know that a lot of other autistics and other disabled people feel similarly. Being disabled can affect a substantial amount of somebody’s life, your experiences, how you interact with the world. That’s why the alternative to Person-First Language is usually called Identity-First. Because in all its work to affirm personhood, Person-First dismisses the identity of the person it’s concerned with.

Disability and autism are also at the core of my social identity. Identifying as an autistic aligns me with other people who share that identity. Disabled identity points me towards others who are like me. A disabled identity can and does hinder you in the neurotypical/able-bodied world. But it is the first step to locating your community. It grants you access to the support and guidance of your peers, which can be of tremendous help in navigating the places not built for you. It can help you create a shared culture. Some sort of disabled identity is a prerequisite of organising, of political action, of demanding the accommodations and the changes we deserve. And I am concerned that by dissuading people from identifying as disabled, Person-First Language could distance them from their communities.

While explaining Identity-First to neurotypicals I’ve often drawn comparison to other minority identities. I’ve seen others do similar as well. I think it’s probably so common because people understand better when they can relate the issue to a group they are more familiar with, someone more visible to them, usually LGBTQ+ and ethnic minorities.

I am gay. If someone called me a “person with homosexuality” I would find that weird. I would assume they’re at least a teeny bit homophobic.

And I think these comparisons are salient, because people can sense the absurdity. They immediately say “Oh, yeah, that does sound weird”. I’ve also seen these comparisons take the form of “you wouldn’t call X person a person with X-ness, would you?”. And generally, yes, I don’t think I’ve ever heard anyone earnestly say “a person with blackness” or similar. But the more I think about it, the more I feel the tendency may be there for people to treat other marginalised identities in a similar way.

One of the first people I ever came out to was my secondary-school sex-ed teacher. Her first concern was not my happiness, my pride, or even my safety and mental well-being in the homophobic shithole I grew up in. No, the first thing she said was that homosexuality does not define me, that I should not let it define me. And, of course, there’s white people who will go to incredible lengths to avoid describing someone as black. “Why did you need to mention that you’re a woman?”

I think there’s a general tendency by majorities to view marginalised identities with suspicion. Why would you choose to identify with THAT? If you can’t choose not to be THAT, why wouldn’t you at least try to distance yourself from it? I can’t imagine being proud of THAT, it seems unhealthy or delusional to me that you might.

As a wise reddit commenter once told me: “Lol, imagine arguing a literal disability is not a bad thing”

4. Why are you even doing this?

Person-First Language has intentionality, it is purposeful, it is manufactured, it is designed. And this just brings my attention back to “why?”. I try to take the explanations and the principles they cite at face value, but I still just wonder “why?”.

“It’s more respectful”.

Why?

“It honours individuality”.

Why?

“It emphasises personhood?”.

Why?

“People with disabilities are people”.

Of course, what else would we be? Why do you feel the need to say this? People are people. That’s a non-statement, it’s meaningless.

I know I’m a person. Do you? Do you need to remind yourself every time you speak of me? Or are you fully on-board with me, disability and all, but are structuring your language for others, less kind and enlightened than you, who may not see me as fully a person unless you literally begin your sentence with the word “person”? Now, I am all for educating the assholes and empathising with everyone, regardless of whether they deserve it. I’m a big fan of teaching and changing minds and all of that. But should that be done at the expense of minimising my identity, diminishing the parts of me that neurotypicals find unacceptable, which they think are incompatible with personhood? Is that your call to make?

One of the more aggravating things I find about Person-First is the extremely common extension of “people with disabilities are people” to “people just like you!” or “people just like everybody else!”. Because, no, I am not a person like you. I am not a person like everybody else. I don’t want to be a person like you, I don’t want to be viewed as a person like you. I want to be viewed as a person like me. I don’t want my disability to come second to my personhood. I want them to be seen simultaneously. I deserve to be seen as a complete person, with all my neurology and all of my experiences and my unique perspectives as an autistic woman.

Person-First reminds me quite viscerally of the “I don’t see colour” approach to race. Which, as we all (should) know, is bullshit. “I don’t see colour” really means “I would prefer not to see colour”, it means “I consciously attempt not to see colour”. It means “I don’t want to think or talk about race”. It means “race makes me uncomfortable”, ” I can’t relate to people different from me, so I would rather pretend we’re all the same, actually”. I suspect it may be similar for some of the “people with disabilities are people” folks.

You cannot achieve equality by denying or diminishing differences. In doing so, you’re actively failing to affirm and accept them. You’re failing to celebrate them. You are implicitly saying that maybe there is something wrong or shameful there, that maybe those differences are just a little bit impolite to say out loud, that even if some people really are THAT then maybe it’s not important, maybe it’s totally separate from who they really are, maybe…

Maybe people are people even when they’re not people like you or everybody else. Maybe people are still people when one of their defining features makes you uncomfortable. Maybe people continue being people when their (in)abilities to do certain things the way you do them are not put aside.

Maybe you shouldn’t need to literally call me a person. Maybe you should already know that.

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The joy and shame of “reading”

Let me tell you about “reading”. Let me tell you how absolutely terrified I am of talking about “reading”. “Reading” is beautiful, and intimate, and mesmerising, and powerful, and dirty. “Reading” has been my greatest secret joy since before I can remember.

I could “read” since before I could read. There are videos of me as a toddler just chattering, flapping, “reading” away. Completely oblivious to the things around me. They’d say “in her own world”. I don’t know how many of them used it as a euphemism, or just literally, or as good or as bad. I don’t know. “Within self”.

I had other names for it at one point or another, but I don’t remember any of them. It was “reading” at first and most persistent and still my main descriptor (and yes, I do pronounce the quotation marks). Maybe I called it that because other people called it reading. Probably because it involves a “book”, which was usually a literal book, but could be a piece of paper, a notebook, a label, a drawing. My favourite “book” now is a bottle of drain cleaner. I called it “reading” because I did not have a clue what it was. I still don’t quite know. Is “reading” a stim? Is it creative? Is it a cute quirk or a dangerous symptom? I’m not sure and if someone more knowledgeable than me knows please do inform me.  

What does “reading” look like? It looks like staring. I will stare at a surface and concentrate. I will flap my hands, and twitch, and twirl my fingers, and clench my fists. I will verbalise some and make noises. “Reading” is not reading. Reading comes from others, it is other people’s meanings you absorb. “Reading” is my own. “Reading” can come from reading, or seeing, or watching. I may be inspired by other people’s work to “read”. But what comes out is my own.

“Reading” is also not writing. Writing is for others. Even if you don’t intend to share your writing, you write in a form, in a way, using the language of, others. “Reading” does not. When I “read” I imagine, I visualise, I world-build, I create maybe. But “reading” has no plot, it has no prose. I sincerely doubt my “reading” would have any value to others. “Reading” is list-making, it’s a long litany of sensory experiences, it’s naming, it’s mapping. It’s re-telling and re-using the same components over and over again for literal years. “Reading” would make terrible novels. “Reading” is not writing, it has no form, it is pre-verbal sometimes, pre-conceptual sometimes, and it’s wonderful, and it’s mine.

I remember being four. I know I was four because it was in the four-year-olds room of my kindergarten. I was “reading” in a corner, behind a little play-kitchen. Another girl saw me and made fun of me. I hid behind shelves and cried with blind rage. “Reading” was my own, but it could be observed and judged by others. I was found out again and the double humiliation of being found “reading” and then being found emoting left me beside myself for a day. I don’t remember how the adults reacted to the situation. I don’t remember being told anything by anyone. But I remember getting the message that I was wrong somehow, that my reactions were wrong, that I needed to control myself better.

I remember being five or six. Looking both ways before I “read”. I remember not quite getting it right usually, always assuming people were more out of my sight than I was out of theirs. I remember being startled again and again when someone walked into a room while I “read”. I remember visiting my family and “reading” alone in my cousin’s room. I remember my great-grandmother walking past the open door. I remember the look of disgust in her eyes when she caught me. “Just read normally. I know you can read”.

I remember being older. I would “read” compulsively all the time. A bad habit I couldn’t break. I would lock my bedroom doors, my heart racing when I heard a knock. I remember making lists in all my notebooks. Lists of names and ages. Poorly drawn maps. Supplementary reading for my “reading”. I remember being terrified of someone finding them, as if they could somehow grasp their significance. I remember running to the bathroom to “read”. My “reading” slowly becoming more and more tied with the toilet. My “reading” urges becoming one of my bathroom needs. The “reading” pressing on my brain just like urine pressed on my bladder. Holding it in until I couldn’t anymore. “Reading” is physiological, it is private, it is dirty. It’s something I enjoy but I shouldn’t, just like how embarrassing and vulgar it is to admit you enjoy defecating.

I remember being fourteen. I was in a psychiatric hospital for a few weeks. I was no longer allowed to spend hours in the toilet. They thought I would throw up or smoke in there (to be fair, I did do both). I held my “reading” needs in as long as I could. Until I couldn’t. I would “read” on my bed, trying to keep my eye on the window-walls, trying to keep an eye on other residents. I remember a nurse walking in. She’d seen me “reading” while doing her rounds. She looked a little weirded out, a little confused, vaguely disapproving. She asked if I heard voices. I said “no”. I don’t think she believed me.

I remember now. I remember only ever “reading” in the bathroom. I remember feeling scared and violated when my partner of 3 years walks in. My partner of 3 years, who knows I’m autistic, who knows I “read”, who’s neurodivergent herself, who’s wholly supportive. I’m ashamed and I’m ashamed of being ashamed. Mary says “I wish you could do it with me in the room”. It feels like she just asked me to shit in our bed. “Reading” is dirty, “reading” is bathroom stuff. Mary leaves a book for me to “read” in the bathroom. I am moved, though I still prefer the drain cleaner.

I remember volunteering in a new class. I like spending time with my special needs students. I like seeing them. I like being able to, for the first time in my life, look at another person and recognise them. I remember seeing a little girl walking around with her book. Her fingers twirl around, her fists clench with the power of her “read”. She says the words that I don’t understand, but I know the conviction in her voice, the way she emphasises. Her face is strained with emotions I don’t recognise, but I know they are strong. I know they’re not for me to recognise or respond to. They’re just for her. I remember calling my dad right after school. “I met a little girl today and she’s autistic, and she does that thing with books I used to do!”. He remembers my “reading”.

Mary and I can’t sleep. She asks me if I can tell her about my “reading”. And I do. I tell her about the places I’ve spend hours in. The same places I had when I was six, and nine, and thirteen. I tell her about the typography of “Downtown”. I show her a Google doc of the residents of “Witch-village” (the names don’t matter, I don’t use the names, please don’t judge their names, they’ve never needed to be named before). There are over 300 people now, still growing. I explain laws and customs. I explain Hazel, and I explain Turnip, and I explain the one woman whose name I forgot, but I built her house, and her town, and her community, and her universe around her. I tell her it’s not writing. No real plots, not meant to be entertaining. Not meant to be characters. Not meant at all.

I remember seeing the look in Mary’s eyes. I know she’s feeling like I was feeling one day in May, when she told me about finding a dead lamb and we both almost cried. “Your head is beautiful” she says. I think it is too. I “read” in my room sometimes and it feels like rebellion. Not when Mary’s home, or when curtains are open, or anything else too radical. But still, not the bathroom.

I remember the little girl at school. I know there’s other “readers” out there. And there are stimmers, there are dirt explorers, there are toy line-uppers, there are organisers and patterners and creators. There are people in this world I recognise. And they don’t belong in the bathroom and I don’t belong in the bathroom. We are not dirty.

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“I’m sorry for being disabled” or my two-parts epiphany

*Written in May 2018*

One day I got a letter in the mail that changed my life. I cried, and I smiled, and I read it over and over again. I did not get accepted to Hogwarts or win the lottery, but it felt like both and so much more. My whole life I was wondering what was wrong with me. Why is everything so difficult? Why am I so different? Am I making it up? Is it real?

And then there it was. I didn’t’ make it up, it’s real and it has a name. Autism.

So I latched onto the name I was missing for 16 years, and I wore it proudly. I no longer desperately tried to suppress my flapping in public. I wore headphones to help with the noise. I put an “Autistic Babe” badge on my bag. And if it ever came up in a conversation I said “My name is Natasha, and I am disabled. I have autism”.

As many autistic people I have my “things”. My “thing” is that I stomp my feet when I’m excited. I bite my hands and hit my legs when I’m anxious. And I repeat things when I get confused. I say “I don’t know”, or “I’m ok”, but usually I say “I’m sorry”.

It goes like this:

 a feeling, thought, or behaviour occurs

                             ↓

                             ↓

 there’s an overwhelming sense of guilt 

                             ↓

                             ↓

                     “I’m sorry”

Sometimes a person who doesn’t know me well will seem puzzled, and that can lead to more guilt. Then I’m stuck in a loop of apologising for apologising. But if someone asks me what I’m sorry for, I usually say “I don’t know”. I don’t know what I did wrong, but I know I did something and I have to apologise for it. 

Today I was confused. I get confused a lot. I was, as my girlfriend once phrased it, “extra flappy” today. I had trouble speaking. I stuttered, and I couldn’t form sentences. I rambled about semi-related things, and whilst my speech is usually very poorly filtered, today it was barely edited whatsoever. I said anything that came to my mind. 

My girlfriend and I talked. She wasn’t feeling great, and I was not very able to help. It took me a while to realise it, but when I did, in came the guilt. And with guilt came the “I’m sorry”. She asked, as she often asks, “What are you sorry for?”. Without thinking I said “I’m sorry for being disabled”. She told me I’m loved, and she doesn’t mind, and I am not a burden. I said nothing, because I was still confused and language is difficult. We said goodbye and I went to a lecture.

In hindsight, I would probably have done better if I just went home. It was not my day, I was very vaguely aware of my surroundings, I had already had three meltdowns. But I RSVP’d to that lecture, and I was raised right. I show up to things I RSVP to. 

The lecture started, happened, and ended. So far, so good. Then, there’s a wine reception. There’s chatter and informal social interaction, and, boy, am I not prepared for either. I want to go home, but there’s people between me and the door. I’m scared to go past them. Ten minutes pass, then twenty. I’m biting my hands and hitting my legs. I can’t get up, I can’t speak, and I can’t breathe. 

A guy comes up to me, asks me if I’m ok. I struggle to get out the words. I say I’m fine. I say I’m sorry. He goes back to mingle. I try to get up, but my legs don’t work, so I rock myself back and forth and I whisper “I’m ok, I’m ok”. Five minutes pass and he comes back. He asks me what’s wrong.

I say “I’m autistic, I get overwhelmed easily, I’m scared to go past the people to the door, and imsorryimsorryimsorry”. He helps me get up and go outside to calm down. I apologise for taking too long to pack. I apologise for needing to go to the bathroom. I apologise for no particular reason.

He stays with me, he smiles, he tries on my headphones. I tell him it’s probably a sensory thing. That I’m usually quite independent. That I didn’t want to bother anyone. 

“What do you mean bother anyone? You’re the one who deals with this all the time”

He walked me to the front door. I thanked him a lot and apologised even more. I didn’t even think to ask about his name, or if he liked the lecture, or if he goes to this uni. 

I sat on the bus, I calmed myself down and I thought of what I told my girlfriend and my anonymous friend. 

I have been marching in the Autism Pride Parade, while apologising for being autistic every single day. I thought of all the “I don’t knows” behind my “I’m sorrys”, and I realised I had been apologising for my symptoms. I apologised for not knowing what the person I’m talking to expects from me. I apologised for flapping and for hitting myself. I apologised for being confused, for having trouble speaking, for needing help.

And I thought of little autistic children I work with. How much I want them to love themselves. How much I want them to be able to ask for help when they need it. How heartbroken I would be if they ever told me “I’m sorry for being disabled”. There is a serious problem with how our society treats autism. There is not enough support, there is too much stigma. And of course I want to make a change, but I didn’t realise I was a part of this problem. That another autistic person could see my shame and guilt over being autistic, and think that they also have something to be sorry for.

So I’ll start the change with me. I am not an inconvenience or a burden. I can’t always care for myself or care for others, because being disabled means that sometimes you’re not able. And it’s ok. Today at the lecture I was not bothering the person who supported me. He saw somebody in distress and chose to help them, like we all should. Tomorrow I will thank for getting help, but I will not apologise. Tomorrow, I will try to become unapologetically disabled.