Why I wasn’t diagnosed as autistic in childhood? (Part 2/5)
TL;DR: Because I was (am) an immigrant, from abusive and normalizing family and (misgendered) as a girl. Plus, there was lack of awareness in general. This is part 2 of 5 part series that answers that question. Every part will deal with another element that explains why I wasn’t diagnosed till I was 25.
CW: force feeding, abuse, vomiting
2. abuse and Normalization
I put the picture of the Russian school girl not because I looked that way (I went to school in Israel, where school uniform is rare at secular elementary schools). I put it because I was expected to be that school girl. It was the perfect child that was taken away from the female part of the family;
- With neat hand writing (my hand writing was compared to chickens scratchings in the dirt).
- One that can dress neatly and stay neat during the day (I remember more when one hitting because I came home messy, and to this day I can’t stay neat to a long time).
- That has always perfect grades (mine were… good, but never perfect).
- That can finish copying everything from the blackboard in time (a thing I just can’t do. I stayed long after school to finish copying, and I was scolded for copying too slowly, even though I tried my best.)
- That can do the homework swiftly and neatly (things constantly fell out of my hands… well, they still do).
- That can concentrate in class.
- Not to make mindless mistakes in math because I didn’t payed attention and mixed up 2 or 3 questions together.
- Etc’
I wasn’t that child. I was expected to be one, but unlike my always perfect friends and relatives, I could never be one. I couldn’t even be an average child (with good grads, they were obligatory.
In a way, I was a nightmare of a child.
I would meltdown after I was told to do something. From my point of view, I wanted to do something and planed to do it in my head, when forget to do it. I would melt down crying I hate doing things twice. Even though I did it twice only in my head.
I would take off my pants before going to the bathroom, even in our neighbor's apartment.
I knew nothing about social cues and communication, but it wasn’t seen as a problem. Because all my hardships was seen as laziness and attention seeking and bad behavior. And my grandmother had one universal solution for every problem — some good old scolding and hitting. So, I had to learn to behave as normal as I could manage. I sucked at being normal, or perfect. But I tried my best.
Some might not agree that my family was abusive. It is OK. I thought they weren’t abusive for a long time as well. But my experience is that they were abusive and tried their best to normalize me(from the best intentions, because loving people abuse as well).
I wasn’t only a weird kid who tried their best to be perfect. Things were really messed up because it wasn’t only hitting and scolding, a thing everyone I know grew up with. I had no autonomy over my body at all. In my eyes, it wasn’t mine.
Like many autistics I was a picky eater. I use past tense, because it was forced out of me. Picky eaters usually refuse to eat certain foods because of the texture, smell or… well…just because food X is touching food Y.
I was somewhat underweight while I lived with my parents and without my grandparents. My dad knew how to distract me so I don’t notice too much what I eat. I wasn’t an extreme picky eater. But I was picky. So picky that at some point in my early childhood (about 5 years old) I had high cholesterol levels, because all I agreed to eat was eggs, fried liver and olives. I agree that it wasn’t healthy at all. This, and the fact that I was too skinny really helped to “convince” my grandmother into force feeding me. And by force feeding, I mean violent, manipulative and traumatizing force feeding. I already talked about how I was forced to drink tea for years. Force feeding me wasn’t different.
If I gag or even puke — I get shouted at, slapped or threatened that I will be forced to eat my own vomit. Also, I would be given more food. I was told I am doing it on propose. So I ate and tired my best to ignore my nausea.
If the food tasted spoiled or just wrong and said it I was told I am lying and that everything is fine and I should eat it. I am very sensitive to the “spoilage” of food I taste as spoiled by me usually tastes this way only a day later to other people. But I figured it out only when I moved out of my parents home.
The same was if the food was too hot (or not worm enough in my grandmothers standards, even if I liked the temperature).
My grandmother was sitting in a way it would hard for me to escape, if I try. If I ate too slowly (always) or stoped for several seconds and wasn’t eating constantly I was force fed. Or if I refused to eat. Or if I said that the food is spoiled, to hot or have a wrong taste. I also was threatened to be feed via Zonda (a feeding tube that goes from your nose or mouth to your stomach). It never happened, but it was scary (I am not sure about eating my own vomit, thought. I remember forcing my self to eat in in some point because of the shame and the fear. I think it happened, but I can’t be sure). I know it is not my imagination because my youngest sister is still treated that way.
If you say that force feeding is not an abuse, please, ask someone to hold you, shove spoons fool of too hot food into your mouth, and to do it with a too big spoon, so it scrapes the roof of your mouth, in a tamper that is too fast for you so you barley have time to chew and swallow. Ask them to hold your mouth open by pressing your cheeks. To hold your hands so you can’t stop them. To shout at you and to threaten you. And also accuse you at their health problems, because you make them so worried. Fun, isn’t it?
So I couldn’t afford to be a picky for a long time.
If I stimmed while near the table I was mocked for it and told to stop. Again and again. To this day, food is a symbol of violence for me. And I have lots of other issues surrounding it.
The food part is very easy to explain, but being picky eater is a symptom that many non autistics have as well. But the thing is that I learned in a very young age to ignore my body and my senses and my feelings. I made myself believe in what I was told. To this day it is hard for me to acknowledge what I feel if someone says I feel something else.
I was not really feeling nausea. The food is the right temperature. It is not spoiled. And this mental tool “helped” me to suppress anything inside myself. I never trusted what I felt and if someone else said that my perception of things is wrong, that they must be right. And I also learned to obey. To hide my self. To be still. To shut up. Not show any physical reaction.
My sensory sensitivities with smell and taste were just invisible. I remember my grandmother cutting a cucumber for me. I like cucumbers. But then, she puts salt on it. And I don’t like salt on my cucumbers. I ask my grandmother not to do that. “But it tastes better that way”. It didn’t. When I was old enough to be allowed to make myself salads to lunch it was forbidden not to add salt to the salad. I don’t want to talk about all the constant mockery and shouting around the table (thought, sometimes my grandma told stories about her life, and they are fascinating indeed). It was harsh and painful. It was about me organizing the food on the plate. Or trying to eat just one given thing at time (“you should eat everything at once”). Or not putting enough food in my mouth at once, or staring blankly and not eating, or doing some sounds or moving my fingers or sitting the wrong way. I also wasn’t allowed to drink while I ate, because my grandmother thought it is a way to cheat in order to eat less. To this day I ask permission to drink while eating.
So even if I had some tendencies to show clear symptoms like repetitive behavior, being picky, having hyper sensitivity, wanting to things in a very certain order, they were invisible because I was just pushed not to do them, but to do and feel what I am told to, even if it feels bad, and I don’t want and I cry and try to run away. I was spanked and threatened so I obeyed.
It was about surviving. Being not me was the only way to survive, killing little parts in my personality each and every day.
