CW: death mention, child abuse, dissociation, behavioralism and psychiatric abuse, suicidal ideation, discussion of ableism throughout, hospitalization, guardianship mention, non-graphic mentions of sexual harassment and abuse
Note: I am going by the name Kat now, and my pronouns are she/they.
It was my first funeral.
It was an expected death. I knew what death was. Seeing my grandmother’s body didn’t particularly bother me. The arrangements themselves were fascinating, maybe because they were a distraction from the actual event.
Of course occasionally it would hit me all at once what had happened and I would cry.
For all they say about autistic people and lack of empathy, I was the first person to console my grandfather about his wife’s loss. I insisted on holding my grandmother’s hand because I saw my grandfather doing the same thing, but I had to stand on my tip toes to reach the casket.
I was only five years old.
My grandparents were closer to me than my parents were, especially my grandmother. My reactions to everything were extremely odd maybe but never unloving. Dissociation is a hell of a drug. When I wanted to watch the coffin go down after the funeral, they let me watch.
What I wasn’t allowed to do was mourn. A couple months later I found myself being forced to justify myself every time I cried. I was told that I should be happy that my grandmother was dead, because she was suffering, and was in heaven. If I cried, I must not really love Grandma. “You’ll go to heaven too one day,” I was promised.
At first I was terrified of dying, but then I found myself fantasizing about dying from sudden illnesses or car accidents. Every time I was screamed at or hit, I found pleasure in the thought that I would suddenly die.
Approximately 1996, St. Louis
A small girl sits in front of a psychiatrist’s desk, fidgeting. He smiles. His smile is too big. It makes her nervous, and she doesn’t know why. He stares too long, and that feels wrong too.
“[Name redacted], you don’t…fit in.”
Fidget. She watches her feet because he just keeps staring. He does the thing again where he tries to make her look in his eyes, and it’s uncomfortable. She turns her head.
“You don’t play with the other kids.”
Apparently he hadn’t been listening when she had said that the other kids bullied her. She tried to play, and they were mean. This felt unfair, but saying that always resulted in “life’s not fair” speeches. No one ever cared. Maybe it was her fault. Everyone else thought so.
“So we need to try to work on how to make you fit in.”
She thinks about this phrase, about how it feels when she is forced to wear poorly fitting clothes. She thinks about the way that groups of children would form circles during P.E. How even when they were told to let her join, they would refuse to budge and laugh when she cried, and the teacher would blame her. This was surely what the doctor meant by not “fitting in.”
The realization hit her then. It was her fault. All her fault. She was weird and no one liked her. And maybe there was hope. The kids would let her join the circle if she was fixed.
She wasn’t allowed to cry. He would probably tell on her. She didn’t trust the smiling man. But she would do what he said.
It was never accepted that I couldn’t be normal. Through force of will, I could fix myself, and I wasn’t trying.
“Why didn’t you—“
“Why can’t you just—“
Everyone is always yelling about something, and I can never do anything right.
“[Name redacted] does not apply herself,” appears on report cards as often as “[Name redacted] is a pleasure to have in class.” Both are pointed to as evidence that I am lying about what has happened.
“How long are you going to use your disabilities as a crutch?” That’s said at least once a week. If I say I can’t do something, I am lying or not trying.
An assessment at some point suggested that I could be autistic and my mother threw a fit. I wasn’t an r-word, I was smart. I was going to do great things. She had plans for me before I was even born, and some diagnosis was not interfering. How dare they call me that.
Every time I am called an r-word by a classmate, I remember that assessment and the knife is twisted. “Why don’t you sit with all the other freaks?” I sit alone because I am too scared to be outed. But they know. They call me queer too. Of course they know.
I can’t do great things if I am like that.
I try to forget the assessment because it was clearly wrong.
Approximately 2007, Freeburg, IL
I am pulled out of class to go to the school counsellor. I hate her. She is one of those people who makes exaggerated sympathetic faces that I know are insincere, but am forced to pretend are genuine to prevent myself from being punished. She tells me constantly how she knows how I feel, and she is wrong 90% of the time. She makes decisions that she is certain will help, which have always given me immediate panic attacks because I have to go behind her back and undo them.
She obviously thinks she is an extremely good person, which I consider her most obnoxious trait, but I am not permitted to say anything to her about any of these things. She is a very good person for helping a poor troubled kid like me, especially when she makes it harder for me to exist. I am a bad person if I tell her this. This is the way it works and I learned this when I was extremely young. Me bad, adults good.
She basically tells me that she’s decided that I act weird.
I stare at her, dressed in my goth regalia, in trouble for writing a disturbing short story for English (ffs I was supposed to reimagine Chaucer and I did what was asked), and am once again thoroughly unimpressed with her insights.
She goes on to describe my behavior in a way reminiscent of progress reports that shamed me for being bullied and outcast. Unsurprisingly this went poorly. I felt cornered, and got defensive.
“Have you ever heard of Asperger’s syndrome?”
Irritated, I said I had not.
She somehow managed to describe it as being “socially r****d.” (She later gaslit me and claimed she never said this.) At this point I mentally checked out and refused to participate in any discussion.
It didn’t matter. She had called my mother. I got home to find that “autistic” had been scary years before but “Asperger’s” was great and “so me,” because it was “autistic for smart people.” I felt extremely violated, and the sudden switch in attitude was hard to accept. I didn’t understand why until my mother looked me in the eyes and said, “I guess you won’t be going to college.” She didn’t look disappointed.
I could see all my dreams disappear in that instant, any chance of escape. She wanted to keep me there. I had a full meltdown. “I don’t have this! I don’t! We are never discussing this again!”
That night I Googled Asperger’s syndrome, just to be safe. Autism Speaks was the first result. Their description was so pathologizing I didn’t recognize myself in it at all. It made me hate myself more, and try harder to conceal any traits I had that looked like those. Especially with the constant unwelcome pressure to accept it for magic scholarships that didn’t exist.
Around 2012, St. Louis, MO
I am in a psychiatric hospital for a mental breakdown, the first of many.
“We can’t help you if you don’t use your words.”
I stare as the utter hilarity of the phrase strikes me, considering how often my words were used against me or my silence was forced. I can’t physically speak now anyway. This is not an okay way to speak to anybody, especially an adult, especially someone who has a disability that makes speech difficult. If you say this, fuck you and your power trip.
I am absent from my body as they speak about me as if I am not there, as one would an animal. I remember my childhood psychiatrist, who would make me play while he spoke about me the same way with my mother and everyone pretended I didn’t understand, and that I didn’t care about the lies.
There’s not much I can object to here. If I don’t eat the food that I physically gag on, I will be force fed. I don’t have much choice about the drugs. Every reaction I have is monitored and I am to self report every thought I have so they can tell me if it’s valid. “This is helping you. Don’t you want help?” they ask, as I object to what is clearly a reinforcement of all my worst traumas.
It doesn’t help. Almost any of the times I go in. I keep coming back worse. Until the thing I am most afraid of in a crisis is the hospital and the doctors.
They tell me what is real. They rewrite my life story. They baby talk me, do toxic positivity and pseudoscience, and if I show any slight signs of offense I get in trouble. Patients who complain are sometimes sent to worse places. They know me for two seconds and insist people they have never met obviously love me, and give me terrible advice that hurts me when I follow it. They try to force me to pray. They sexually harass me where I have no ability to fight back. They let patients harass each other and shrug and say they can’t stop it until it gets physical.
I am told this is help. I go home and see people say that we need more places like this. “Lunatics running the asylum” is seen as bad but we are never consulted, and that is why we are abused.
“But you’re high-functioning.”
I laugh at this description from a stranger. I barely have the executive function for chores some days. Multiple AAC programs are installed on my phone that have failed me because they were designed for children. I go through periods of aphasia so severe that language will disappear almost completely due to stress or just brief overexcitement. When my sensory overload is bad enough I strip because my clothes hurt my skin.
Most people don’t seem to be aware that I’m under a guardianship since my third suicide attempt in January of 2020. And some warrior mom will smugly insist that I must not be autistic (or the right kind of autistic) because I type good, and her kid never will. Which often she doesn’t know. Often the kid is under six.
The rubric being used here is that I am an adult who can type. That clearly has nothing to do with how severe my disability is.
What’s even funnier is when people hear I was late diagnosed and accuse me of shopping for my diagnosis. As if I wanted this at the time. As if I wasn’t denied a diagnosis at an earlier age. As if I get any fucking thing out of this.
St. Louis, 2021
I’m hilariously easy to abuse.
My involvement in ASDay, originally under my deadname, is really ironic, because I was very different years ago. A people pleaser. Unable to say no easily. A product of years of abuse. I felt proud of it, really accomplished, and then I would feel overwhelmed with doubts because really it was Corina’s project and I had just promoted it, and I have become less involved each year as things have deteriorated for me. Corina has been extremely understanding and tried to keep me involved without overwhelming me. I still think I probably got more credit than I deserved for it, despite having less imposter syndrome now.
I still sometimes freeze up when I should advocate for myself. Years of being silenced have left me with maladaptive coping skills. Dissociate. Hint. Prod. Do a passive aggressive. Bottle it up until I snap, because I’m sure not a full human who’s allowed to show emotions, but eventually the resentment will build. Does this make me a bad person? People are supposed to be happy all the time, and nice, even though people are doing horrible things to them, right?
I found ways to survive. I lied to avoid punishment. I hid and stole food. When I tell people the awful things I was doing they expect that I was lying to hide the kind of things most teenagers hide, not evidence of my disabilities or innocent interests.
But when I get caught I am evil. Manipulative. Sinful. Even though I was being treated much worse, but of course I wasn’t allowed to talk about that, because that would be spreading rumors, and they had me outclassed as manipulators. My skills were honed for survival, not causing torment. I don’t think I was a bad person but people saw my actions when I was frightened and naturally assumed the worst about me.
And when I finally wanted to explain to anyone I couldn’t get the words out, and people just assumed that I had normal loving but strict parents and was a normal rebellious teenager. I barely left my bedroom, and now I don’t leave my house.
My old coping skills don’t work for me anymore. I have put significant effort into changing my actually shitty behavior. But no one wants to recognize that change takes effort, and money I don’t have, or that this was a survival strategy born out of trauma. No one wants to recognize that I would have never survived if I hadn’t developed these strategies as a kid, because clearly I was evil even then and deserved to be hurt, or that my trauma was anything other than imagined. Because look, these documents say I’m crazy! It’s not like child abuse causes mental health issues, right?
People will also legitimately ask me why I didn’t leave when things first got bad in awkward situations that escalated into horrible ones. The simple answer is that I have been programmed my entire life that I am not allowed to leave such situations. I have often had to use my wits to figure out how to get people to hurt me as little as possible, and leaving is not an option I realize is available. Either I froze and fawned, or I fought and was punished. It’s extremely difficult to find a balance between those extremes when I can’t afford a therapist.
I’ve realized that people don’t like it when I assert myself because they’re used to being able to use me as a doormat. I don’t think this is an unusual autistic experience, and I am much happier without those people in my life. There’s people that will respect the real you.
Advocating for others was easier. The stakes were much higher when I advocated for myself. It’s the hardest thing I have ever had to do, because all of my programming for years has taught me to keep my mouth shut.
I guess what I am trying to say to anyone reading this is don’t forget to advocate for yourself, even if you have to take a step back for a while. We can’t keep having autistic advocates quit due to burnout. There’s a significant issue in this community where advocates with more privilege are being cruel to those who lack it, and I have avoided a lot of this on account of being white and dropping out of things when I became more visibly disabled. Thankfully there’s a lot of people talking about this constantly, and I am glad.
I’m blogging regularly at The Turbulent Autistic on Facebook right now. I don’t think I am going to use this blog much anymore. It’s a relic from before.