The Three Whys (of my autism)

Why do I have autism? When I was diagnosed I never asked myself that question. From what I knew about autism (and what I’ve learned since) the cause of autism is partial genetics and mostly still unknown. It is a neurobiological disorder that definitely has a genetic component but what that component is exactly isn’t known. Studies have found anatomical differences in the brains of some individuals with autism but by no means all people with autism. Brain scans have found differences in the way the brain of an individual with autism reacts to certain stimuli but this is a correlation. Causation is not found in any of these studies. Like any disorder that effects the mind the why of autism is bound to be incredibly complex. I am the only person in my large immediate family with a diagnosis of autism but I am not the only one to display autistic characteristics. Looking at my family objectively, I can identify traits of autism in my father, two of my brothers, and two of my great aunts (my Dad’s aunts). My father grew up in a generation where a diagnosis would only have been made for someone with a very profound mental disability. Someone like my Dad who was successful in school and never a behavioral problem wouldn’t have drawn attention. My brothers were probably never identified for the same reasons. They both had excellent grades and never caused any problems. Both of my great aunts come from a background of profound poverty. Neither of them went beyond junior high and when they were young the most profoundly disabled were hidden away and forgotten about. The elder of my great aunts was born in 1922. We’d come a long way by the time I began attending school in the 1990’s.

I got good grades in school but I caused a lot of problems. I had a pathological need for routine and sameness. Any deviation from the norm lead me into a spiral of panic and anger. I had psychical and verbal stims. I still do but trial and error has taught me when and where not to engage in them. I have sensory issues. Certain things, like sand, are intolerable to touch for me. Touching denim is worse than having teeth pulled. I see the rapid flickering in florescent lights that some do not. I can also here the constant buzz all florescent lights make. I can’t not hear it. I’m sensitive to change in temperature. My  kindergarten teacher described me as “aloof; distant; struggles with social skills”. In the first grade I was referred to the school counselor. A report she gave my parents states that I had an “odd manner of speech”. I was “socially immature, inflexible, and naive”. My speech was so delayed that my Mom took me to the pediatrician. He assured her that I was fine and need to be encouraged to talk more. So many, many signs.

So why was I not diagnosed until my 20’s? Part of the reason is that Asperger’s Syndrome wasn’t recognized as a diagnosis in the United States until 1994. I was ten years old by then. Another part was the fact that, like ADHD, autism was a boy’s disorder. Girls with autism were extremely rare and displayed severe intellectual disability and most often engaged in dangerous self injurious behavior. I was reading at a college level in the third grade and kept my mild SIB a secret. One of my earliest memories is my Mom telling me that she never knew when I was happy because I never smiled. So, being logical and practical, I practiced smiling in front of a mirror and reminded myself to smile whenever someone around me smiled. Everyone loves a smile. Basically I learned to adapt. I loved to read and always made sure to have a book with me at all times. If you’re reading people rarely interrupt you. If people didn’t interrupt me then I wouldn’t have to struggle with social situations. When you’re a girl who is very quiet everyone seems to see you as very polite. I couldn’t upset anyone by saying something bizarre or rude if I never spoke. I knew that I was different and that something about me was very, very “wrong”. So I learned to hide it. I compensated. I did my best not to stick out. My grandmother drilled into me how to speak politely to an adult and I used that script, improving on it when necessary. If I daydreamed in class, well, that was hardly a problem with my grades.

So that leaves the third why. Why me? I’ve never asked myself that question either. When I was diagnosed I was incredibly happy. Finally a name for and a description of this thing I had always known was there. I was autistic from my very beginning. From the womb to the tomb, yo. I have never not been autistic. I have had parents ask me “Why my child?” My immediate, but never spoken, answer is “Doesn’t matter.” To me it truly doesn’t and I find it hard to understand why it would. If a child is nonverbal, aggressive, and/or engages in dangerous behaviors like elopement or severe self injury I guess a parent would want an answer more concrete than “genetics…mostly.” I will never be a parent because I know that I lack the capacity to be a competent one so I guess I’ll never be in the position to ask that question. There was never a time in which I have not been autistic. It was no surprise to me and my diagnosis caused me no pain and much joy. But I lived with my autism for 21 years. The only thing that had changed for me was this thing had a name. I do want to understand though. When I work with a child with autism I am working with their family too. If any parents read this I’d love to hear from you.