Why I wasn’t diagnosed as autistic during childhood?
5. Synthesis: Life, ignorance and everything in between.
This is the last part of my 5 part series about the reasons for me not being diagnosed. I analysed 4 of them. If you haven’t read them yet, I do recommend doing that (but you don’t have to do it in order to understand this text). Here is a brief summary including links to previous posts:
- Being an immigrant
- Being normalized and abused into passing as a neurotypical by my family of origin
- Being perceived as a girl and having presumably “atypical” manifestation of symptoms. (Read more about atypical autism traits here)
- Lack of awareness and acceptance
In each part I explained and gave evidence and examples for these reasons. But if you look at the reasons and the examples I gave in these posts, you can easily see that they intertwine in some interesting ways.
The lack of awareness works so well with “atypical” symptoms and being a girl. When the knowledge about autism is outdated and based on stereotypes, it is so easy not to think that autism might be involved.
Atypical symptoms are not actually atypical. They are the same symptoms that manifest differently in people whose socialization wasn’t of cisgender boys. Shyness is something that is somewhat desired and seem like a good quality in girls — which a lack of socializing may look very similar to.
If one is an immigrant these symptoms may seem even more atypical. Some of the symptoms may be even dismissed/seem like cultural differences or immigration response. Immigrants have different accent and have problems with grammar so my different speech patterns, tone of voice and my made up expressions of speech never seemed like they may indicate neurodivergence. I actually worked with some neurodivergent kids who were born in Israel and because they are “Russian” no one was surprised or suggested any help that wasn’t about language skills. I worked with them and although we did work on language as well— it was clear that it was not their only hardship.
The fact I am from abusive family only pushed my symptoms into the more atypical side and pushed me into masking them so I wouldn’t be punished. The fact that I was an immigrant helped the system not to care about that, even when I told about the abuse I lived with and self harmed. The lack of awareness and acceptance just resulted in my teachers and family see me as an odd person — just the way I am. My abuse and trauma related symptoms and my autism worked against each other and just made me look like a very confusing and odd individual — and no body actually cared enough to ask me how I feel without pressuring me to obey them. My abuse taught me to ignore my body and my sensory sensitivities so no one , including me, even noticed them till I was melting down from unknown reason. I lived feeling anxious 24 hours a day without linking my feelings to my constant discomfort.
I was quite “successful” academically so there was no reason to do anything. I am not intelligent or smart, but people tend to think I am, so they just think my behavior is a game I play in order to get attention. They enjoy my “colourful character” and my “wacky humor” for a short time, till they understand , to their horror , that I am weird and strange all the way down — from top to bottom, strange down to my bone marrow. At that point they just feel betrayed and stop talking to me, or just decide that I must behave that way from a choice and not because I actually have very little idea of what I am doing and I am always anxious about doing a social mistake, which happens very frequently. They think I do it on purpose. Because it is only reasonable that a person won’t look them in the eye in order to offend them and not because they actually don’t know better, and when they do know — they don’t do it because it is scary and painful and hard.
So I just lived that way. As an outcast kid who was abused at school and at home, who tried to please people around them and obeyed them in a hope they will stop hurting me. I obeyed and hoped that one day I will know enough and will “get it” because every thing will click into place. I was reading books and articles about body language — but usually they assumed more understanding when I had. I felt like an analphabet who was thrown into an advanced literature class.
I actually called myself as “socially disabled” several years before I was diagnosed, because at age 22 I had no choice but to “understand” something must be very very wrong with me if I just can’t understand most body language (unless pain related) and tone of voice and people in general. I thought that it must be that way because I was abused and socially isolated (by my grandmother and by my peers) — and somehow I missed my opportunity window to learn non verbal communication and that I will never be able to communicate with people.
But I was wrong. They were wrong.
I was just autistic.
I am weird. And I am broken. But not by my autism but by my life. The wrong in me was actually done to me, upon me — by the abuse I leaved through.
I am working very hard on healing myself and being the best I can. The best autistic person I can be. I will never be neurotypical, and that is ok. I don’t have to be in order to be happy.