This post is part of a series for Autism Acceptance Month in which I will be exploring various ideas and subjects relating to autism and being autistic.
Content warning: bullying, self harm, suicide
When I was 11, a girl I had been friends with for almost two years passed me a note in the middle of a science test. The note explained that she had been trying to get the message across to me for a while but that I wasn’t getting it. She didn’t want to be friends with me anymore, but I just couldn’t take the hint. I excused myself to the bathroom and sobbed, mourning the loss of not just her friendship, but all the friends I had made through her. Once again, I was alone.
When I was 9, the bullying escalated. I was mocked constantly by my classmates and had no friends to turn to. It was this year that I began making myself throw up in the mornings to get out of having to go to school. This went on for months before my parents realized what was going on. I was promptly sent to a therapist who played Boggle with me and taught me to rip phonebooks when I got upset. We never really did address what was going on at school.
When I was in high school, I started trying to dress in ways that helped me fit in better with my friends. Yet, every day, by second period, I wanted to claw my skin off. I frequently had to duck away to the bathroom to cry for a while because I couldn’t cope with the feeling. Sometimes it was so bad that I would cut myself. I didn’t understand what was wrong with me. I didn’t realize that this pain was caused by my clothes.
When I was 13, I started to cut myself. I remember reading about cutting in Chicken Soup for the Teenage Soul. When I had initially read about it, I was horrified that someone would do that. However, by 13, I was in so much pain from all the bullying and ostracization that one day, while sitting in class, I began to carve lines in my arm with the metal spiral of my notebook. That was the first of many times that would follow. It would be a decade before I managed to stop myself from cutting when I was in too much pain.
When I was 15, I tried to kill myself. I downed a handful of pills, some antidepressants that made me tired, hoping it would just end it all. I couldn’t deal with the pain anymore. The pain of lost friendships. The pain of loneliness. The pain of always being different and not knowing why. I slept for days, but I woke up still alive, my parents none the wiser to what I had done.
Scattered memories from a life half remembered. It is both a blessing and a curse that I remember so little of my life. I know that I was bullied extensively but I can barely think of any instances. I don’t remember the specifics. Sometimes someone will say something and I’ll have a flash of remembrance, but these are always fleeting. But while I remember little of my childhood, little of my life in general, one thing I remember painfully clearly is always knowing that I was different. Even when I was very young, I knew that I was different than the other kids, but I didn’t know why.
I knew that I missed jokes. I often didn’t understand why the other kids were laughing. I learned to laugh when others started to laugh to hide my lack of understanding. I knew that I was more passionate about my interests than the other kids. No one wanted to listen to me go on and on about what I was interested in, so I stopped talking about my interests. I knew that other kids didn’t move the way I did and that it was one of the reasons they picked on me, so I learned to sit still more and stop my body from moving in the ways that felt natural. I knew that I was utterly different from the other children, but I didn’t know why, so I learned to hide myself. I learned to shut down the things that made me different, to compensate for the areas I seemed to be lacking, to change who I was to try to avoid the bullying.
By the time I was 15, I had started researching mental illness to try to figure out what was wrong with me. By that time, I was convinced that I was broken and wrong and needed to find answers so that I could be fixed. I read through the DSM. I researched as much as I could. Slowly I found some answers, though never anything that would account for everything. I learned that I have depression. I discovered I had anxiety. I eventually learned, after much debate, that I am schizoaffective. The list of diagnoses piled up, but they still didn’t explain everything.
At 18, only a few weeks into college, things got too intense with my friends and I overloaded and ran away. I hid myself on a rock that rested within the protection of several bushes. I hid there for an hour until my friends found me. It was the first time someone had cared enough to chase me down.
When I was 25, I read something about autism that hit close to home. After days of deliberation, I asked my husband if he thought I might be autistic and he responded with a very strong affirmative. Apparently he had had this suspicion for a long time but was waiting for me to figure it out for myself. I began to research autism intensely. I read blogs by autistic women and found myself in their writings. I read blog after blog, beginning to end, and with each post read I felt more at home in the idea that I might be autistic. I read over the DSM criteria again and again. I read lists of atypical autistic traits. I read anything and everything I could. Finally, I determined that I was autistic and my life began to make sense.
For the first time, I was able to start taking steps to improve my life. The crying fits because my clothes were so uncomfortable I wanted to tear my skin off? Sensory issues. I started to seek out clothing that felt good to me rather than focusing on how it looked. Suddenly I was having less meltdowns. I learned about meltdowns and that the periods of great emotional distress and sobbing and thrashing had a name and that I could do something to help avoid them. I learned why I had always felt so different from everyone else and I began to accept myself for who I really am. I began to let myself stim. I put less pressure on myself to be social. I let myself act more naturally.
Growing up undiagnosed was hard. Knowing you are different but not having any words to describe your own experience is difficult. I didn’t understand why I was bullied so much. I didn’t know why I was always losing friends and often ended up alone. I didn’t understand my outbursts (meltdowns) or the times I would lose the ability to speak.
Being able to now view my life through the lens of autism, things make so much more sense. I understand my experiences in ways I never had before. My depression and anxiety can be linked to my experiences growing up autistic without knowing. All of the missed social cues and misunderstandings of social rules can be seen so much more clearly. My life of always feeling different has been validated by having a name for my experiences and knowing there are others who can relate. Finding the autistic community has been such a blessing in my life and has taught me so much.
Growing up undiagnosed is painful and challenging. Whether we are diagnosed or not, we know we are different. Not having the words for the experiences we face makes it so much more difficult to manage or find appropriate help. Many of us who grew up undiagnosed carry a lot of baggage that we will need to work through if we hope to move on from the trauma of our childhoods. Yet, in some ways, I’m glad I wasn’t diagnosed. I fear that had I been diagnosed at a young age I would have been subjected to the horrors of ABA which I am very glad to have missed out on. Even still, I wish I had had answers much earlier in life. Perhaps I wouldn’t have as many scars, both physical and emotional.