Today my kids watched a current affairs program in which they heard the word cure attached to autism for the first time.
This is their reaction.
The show was called The Enigma of Autism, and was broadcast on Australian TV last night
(it aired in Canada and the US last year). It’s a documentary investigating possible links between antibiotic use and the gut, and while it was interesting there were things that bothered me about the report (I don’t want to go into it, but this sums it up well).
Anyway, I had just started to watch the program today when the kids walked past. They heard the word autism and wanted to know what it was about, so I told them... and then they asked if they could watch it with me.
It's safe to say I wasn't prepared for that.
On the one hand I was really happy that they were interested, but at the same time I wasn’t sure if it was a good idea. I didn’t know what the program was going to say but I got the sense it wasn’t going to be encouraging, and my past experience with autism in the media told me that it was likely to contain the words ‘devastating’ and ‘cure’.
Hmm. Was it time for them to be exposed to that? After all, they’re not little kids anymore. At 12 and 14 they spend a lot of time online, and it’s unrealistic to think that I can protect them from reading it at some point. But they’ve grown up thinking that autism is just a part of who they are, another way of experiencing the world. Different, not wrong. Wait, do some people think that they’re wrong? It was a huge bubble I was about to burst.
I wanted time to stand still so I could figure out the right thing to do. But they were waiting for an answer, and the longer I took the more it seemed like there was something wrong with them watching a show about, well, them. Because anything autism is about them. That word is a huge part of their identity.
So I said sure, and we all sat down at the table to watch together. I told them to pause it anytime they wanted to ask a question. Here’s what happened...
Voiceover: Autism is the fastest growing developmental condition in the-- CLICK.
Attie: What does that mean? Condition. That makes me sounds like I’m not right.
(Crap. This is going to suck.)
Voiceover: There is no typical case and there is no accepted cure. CLICK.
Attie: Whoa, what??
Great. We didn’t even make it past the intro. I take a deep breath, and explain to them that some people believe that autism might be something that needs curing.
Attie: So it's like what happened on X-Men? {A movie where the government tried to cure mutants of their super powers} But there’s nothing to cure. It’s like they’re saying I have cancer. “Let’s cure this man’s cancer. Let’s cure this man’s autism.” What does disorder mean?
We stop for a long time while I explain, and reassure them that nobody was going to pass a law requiring autistic people to be cured.
Voiceover: They both started out as normal babies--
Attie: ...and then turned into tarantulas! Why are they being so dramatic? I thought this show was about autism, not mutants.
Voiceover: He didn’t want to interact with anyone.
Attie: Don't they know that talking is just one way of interacting? People think that if you can’t talk and have autism, that your autism makes you not able to interact. But do they think about other ways of interacting, like sign language or writing things down? Maybe some kids who don’t speak don’t feel safe to speak.
We stopped here because I wanted to hear more about what he meant by “safe”. He explained that there are lots of times when he wants to talk but his body is scared of letting the words out, because then they won’t belong to him anymore.
I was trying to wrap my mind around that when Max, who’d been sitting there silently, suddenly leaned in and said “You know, I have things that I’m really good at. Like video games.” And with that he put his headphones on and went back to playing his iPod.
We didn’t watch any more of the show.
Afterwards I spent an hour lying on the bed with Attie, talking about what we'd seen and how he felt about it. I’d been worried about them being exposed to the idea of a cure, but it was their immediate and intense reaction to the word normal that had surprised me the most.
I know that this is something they're going to encounter more, and no doubt we will discuss it often over coming years. They spend a lot of hours on the internet and it's only a matter of time before they come across words like ‘abnormal’ and ‘cure’ used in conjunction with autism.
Those words are powerful.
People are listening to those words.
Little people learning to love themselves.
