To kick off Autism Awareness month, I would like to start with a personal anecdote:
My parents always say that they knew I was special from the moment I was born, as they do about all of my siblings, but they didn't know what exactly was special about me until I was 2 or 3 years old. They learned that I wouldn't speak or respond to my name, but could recall melodies after only hearing them once and remembered birthdays like my social security number.
Despite this, my family still feared for me. They worried that I was deaf or mute, but after numerous tests, doctors were perplexed. I always rose my hand when I heard the beeping noises and I could speak but chose not to, so they concluded that I had Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS).
Over the course of the next few years, I would go through extensive treatment inside and outside of school--speech therapy, behavioral therapy, medication, mere social interaction with other people--and they would come to realize the error in the first diagnosis. I was performing well inside and outside of school. I was high functioning, diagnosed then with what would have been referred to as Asperger's Syndrome, but is now just called high functioning autism according to DSM-V.
This is when I was about five years old and after taking a kindergarten readiness test coming out of preschool, I scored so high that the principal of the school I was attending wanted me to skip to the third grade! My mother put her foot down and decided that I would work better with kids my own age--I had enough difficulty connecting with them.
As a compromise, they decided I spend about half the day in kindergarten and the other half in third grade. I learned math, reading, writing, cursive, science, social studies, and even Italian, but I didn't quite learn how to communicate with my peers, even in English. Any problem I had was chalked up to being "part of the disorder," whatever the hell that means, and the school in question had no knowledge of autism prior to meeting my mother.
When I was in my early teens, I became acquainted with a family with an autistic daughter who is now nine years old. She is extraordinarily intelligent and thoughtful, and even though we both had plenty of resources, we still ended up falling through the cracks that modern society still placed us in.
It absolutely killed me to hear that she, as a child who was diagnosed about 10 years after I was, is still struggling to find effective treatment. Doctors still told her parents what they told my parents, as her mother once told me--"Medication is the only way out (even though it may or may not help to treat symptoms)," "Autism is caused by vaccines (generated by falsified data and perpetuated by various misinformed celebrities and parents)," "I'm sorry. There's nothing you/we can really do to help her."
All I ask by publishing this piece is that it gets in somebody's head and then it lights a fire inside of them. I want it to motivate them, to get them to move others in their circle to extend their knowledge of autism beyond Rain Man, Autism Speaks, and special ed classes. If I have done that for one person, then I will have accomplished my goal. While we continue to make significant progress in improving the lives of autistic people, we still have a long way to go. Aside from not knowing causes, we argue over terminology and treatment for people who don't need us to tell everybody else who they are. Nobody else needs to tell me who I am or how I need to live my life. You wouldn't tell a neurotypical person that "medication helps" or refer them to every single quack of a doctor or neurotypical person you know. You also wouldn't call them neurotypical people, because they're just people as autistic people are, as you are.
We are equal, but different. Just be aware of that.
