Today is World Autism Awareness Day. I thought I’d take this opportunity to write a list of things I wish other people knew about autism. My list here is probably very different to other autistic people’s lists (and other autism parents’ lists) and to make sure I actually post this today, rather than in a week’s time, I’m writing these points as they come to me so I haven’t planned this out.
1. ‘He doesn’t look autistic/I’d never have known if you hadn’t told me’ is not a compliment. People say this to me about the cubs a lot and sometimes it’s simply said in surprise but often there’s a tone implying they think this is a compliment. It’s not. There’s nothing wrong with being autistic. Being neurotypical is not superior to being autistic and helping someone on the autistic spectrum does not simply mean enabling them to appear neurotypical to other people. There’s nothing wrong with looking autistic and it’s not some sort of testament to my parenting when my kids can pass as neurotypical.
2. I won’t reprimand my child for things he can’t help. Perhaps you’d tell your child off for hogging toys at a toddler group because they need to learn to share. Bear tends to pick a toy he likes the look of and carries it around for the whole of the group. Occasionally another child might want to play with that same toy. Now, if it’s a very sought after toy (one of only two ride-on cars or something along those lines) I’ll step in and make sure other kids get a turn because that’s only fair.
However, Bear tends to find a smallish toy and uses it as a sort of comforter. As far as I can tell, it provides some consistency and a gives Bear a sense of control over his surroundings. He gets very upset if whichever toy he’s picked is taken away and whilst I always talk to him about sharing and ask if he’ll give other children a turn if they show interest (and praise him a lot on the odd occasion he does agree to relinquishing the toy to another child) I don’t force it. He’s already coping with the noise, mess, smells, socialising these groups bring and if there’s something that helps him deal with all that, I’m not going to deny him that.
Autistic children might also shout, make loud noises, flap their hands, say blunt things, avoid eye contact or interaction with other people, the list goes on and on. If they can’t help it, they shouldn’t be punished for it.
3. I’m not a ‘helicopter parent’. I know I hover around my kids more than most other parents. I know I seem to be quick to jump in over the slightest upset. I know I overdo it with the praise or comfort sometimes. And I know it looks to other people like this is all completely unnecessary because the boys look like they’re coping fine (because, you know, ‘they don’t look autistic’).
The thing is, the reason they’re coping fine is because I’m constantly on hand to navigate any potentially triggering situations for them. I might jump in quickly when there’s a disagreement because I know how quickly things can escalate. After a very minor bump my big hug and constant soothing words might seem over the top but I’ve probably noticed the reason for the bump in the first place was because Tyger/Bear has started to become overloaded and I can tell we’re in danger of a meltdown soon.
4. Autistic children become autistic adults. There is more and more understanding and support for children with autism, which is fracking awesome. Thanks in large part to the internet, autism is less and less a taboo subject.
But that understanding and support wanes the older the child gets and is often gone altogether by adulthood. Some people on the spectrum find a life and routine that makes things as easy as possible for them. They find coping strategies and ways to make life manageable. Others just find it harder to cope as they grow up and have more responsibilities and stress. Either way they’re autistic, just like they were autistic as a child and will be autistic as an elderly person. It doesn’t go away.
There you go. This may not be my most cohesive blog post but on today of all days, I just wanted to write something. The conversation surrounding autism is important.