Here’s an interesting (and sad) thing I’ve noticed: As a parent to an autistic child, every time I openly identify with my child, people are considering me less trustworthy. Especially psychologists, doctors and teachers. It’s like I have to talk about my kid as completely different from me, distancing myself from everything autistic, in order to be somebody that people listen to. Isn’t that very a huge problem?
Before my child was formally diagnosed as autistic, I was considered a very good parent. I fought for an assessment, I started making adjustments in our home to make it a more sensory-friendly environment, I read a lot about autism and different approaches and I started using visual aids, like schedules with pictures. Teachers at preschool, my mom and other people treated me like I was some kind of hero for doing all this without any professional help.
When my child was diagnosed a year ago, things started to change. We were offered ABA, but I refused. During this year I’ve read more and therefore I know more and I’ve found more ways of helping my kid feel better. I have deeper knowledge of autism and I know my kid better and therefore I’ve changed my mind a lot. The stereotypes I started out with (like “a person with autism isn’t capable of imagining things”) are replaced with a nuanced understanding. This is great for my kid and for me, but not for people around us.
Since I refused ABA and since I reject a lot of things that are being said about autistic people, I’m losing a lot of allies. Other parents to autistic kids don’t like me anymore and psychologists, teachers and doctors treat me like I don’t know much at all or like I’m just a very nervous mom projecting my own anxiety on my kid.
The biggest no-no is when I openly identify with my kid, as I wrote in the beginning. When I phrase thing like “for those of us who are very sensitive to noises, it’s painful being exposed to a group of people talking loudly”, I lose the last bit of credibility I had left. (Not that I’m openly autistic, but I give some examples of certain things to my kid’s teachers when I’m desperate to give them a better understanding of what the world can be like for autistic people.)
This is probably a part of the dehumanizing understanding of autism that this ableist society has. It’s awful and it needs to change. Actually autistic people need to be listened to. The world needs to start talking to us, not only about us.