2 April is World Autism Awareness day. This post is my Autism Awareness contribution.
A recent South African movie, Raaiselkind (Puzzle child), was about parents who struggled a lot with their autistic son. The producers said they wanted to help with autism awareness. A good thing, you think?
Well, some autistic South Africans gave them advice about changes they could make to represent autism better. They could, for example, mention that not all autistic people are like the child in the story. And that there are some actually autistic people who can shed light on why autistic children behave the way they do. Autistics with a capacity to explain could make a so-called “puzzle child” less of a puzzle.
The movie makers could do something like to add a few seconds before the story which said:
“This movie features a child who is [description of child]. Not everyone on the autism spectrum is like that. This movie features a desperate parent. Autistic adults suggest that parents find advice on how to treat their children here…”
Instead of following advice, the movie makers simply stopped mentioning awareness. Now, their press releases said it is “just a story.” I would argue that they did spread awareness, and I wish they did not. For example, I was recently in a bus on the way to a Passion Play in another city. Two seats from me was an older woman who knows me and know I have Aspergers, and that this is a form of autism. She was telling the woman in the seat behind her about Raaiselkind, while I was sitting close enough to hear. “… Autism is really, really terrible… Autistic people cannot communicate…”
Hello? I am here. My life may not be unadulterated bliss, but autism does not make it really terrible either. And I do communicate. But because I do not have it in my power to make a visual story called a film, the message I communicate is forgotten the moment someone else does.
And this is the problem with autism awareness. The basic message of autism awareness is that we are a puzzle (some autism organizations even use a puzzle piece as their logo), and it is terrible to try and communicate with us. It is even more horrible to parent us or to otherwise try to love us. The messages contribute to autistic people being rejected, not getting work, etc.
A church once elected to remove me from teaching Sunday School, a task I did with love, prayer and skill for over two decades. Why? “You didn’t do anything wrong… It is because of your Aspergers…” In other words, an unchangeable part of who I am caused me to lose the most meaningful task in my life, and the children to miss out on what I could teach. Who or what is to blame for that? I forgave the people involved, but I still blame autism awareness. The things they thought they knew about autism caused, when conflict arose between teachers, that they saw me and my neurology as the problem.
If you want to spread awareness, spread an awareness that we, as humans, matter. Spread awareness of the contributions we can make, of our feelings and frustrations and joys. Spread a message of love, what we need from neurotypicals, and how to show acceptance for autistics. Spread a message that parents of autistic children may find help, or at least insight, by listening to what autistic adults have to say. Recommend the writings of autistic bloggers and authors.