After a conversation with a fellow parent of a child with autism, and after a slightly uncomfortable half hour this afternoon, I got to thinking: how do other people deal with stares and comments aimed at their child or their child’s behaviour?
Today I took Tink to her swimming lesson. Her regular lesson on a Tuesday afternoon was cancelled this week, and they had offered us a place on today’s class instead. It was much, much busier than her regular class and, obviously, had different children in it. There were also a lot of parents, grandparents, siblings and childminders spectating from the poolside (and it’s the teeniest, tiniest little pool ever!). They had clearly squeezed a few extra kids into the class and, therefore, one extra teacher too. It was busy!
Now, Tink has been going swimming for around seven months, and the kids and the parents/grandparents in her usual class have gotten to know her and her, er, funny little ways. Like how she never holds the bar, despite being told repeatedly to ‘hold the bar’ (oh, how we all chuckle at her just doing her own thing every week!) They know that sometimes she cries out or shouts and some of them know that she’s autistic. And that’s because we’ve had a conversation about it. But we’ll come to that in a moment.
Today, however, the vast majority of the spectators and children did not know Tink. And when she became a little anxious as the pool was so crowded and she did not want to hold the bar, but wanted to be on her own in the middle of the pool instead of waiting her turn at the edge, she shouted and cried out and I could see one or two people looking at her, or exchanging glances with someone else. And I fixed a smile on my face and looked at her encouragingly and tried to ignore those looks. (They weren’t particularly bad looks – this time. I’m just a little sensitive at the moment.) Then there was the little girl in the changing room who exclaimed, “a nappy?! Why has she got a nappy on?” Her mum just pretended she hadn’t heard (is she deaf?!), and I just kept my back turned and ignored her.
Now, I’m not ashamed of Tink’s condition. Not remotely. Not at all. It’s just a part of her, not all of who she is, and she’s amazing. But it can put you in an awkward spot when a child has a ‘hidden’ condition such as autism. It’s not immediately obvious to most except the well-trained eyes that a child is on the spectrum. It’s not as if she has a disability that is obvious, so people
often usually jump to the wrong conclusion when they see a child with autism ‘acting out’ – shouting, banging, flapping, rocking, screaming and so on. The behaviours that our children cannot actually help doing, or are doing as a way of coping with sensory overload, or an uncomfortable situation are seen as odd, or weird by people ignorant to the condition (and that’s a lot of people!) And so, natural curiosity takes over and people stare. Some do it more furtively, some actually stand open-mouthed. Then, the really rude ones might comment. Again, some do this more subtly, and some just come right out with it.
Then we, the parents, are in the predicament of ‘what do we do now?’. Part of me – a big part of me – wants to just say, “oh, she’s autistic. She can’t help it/doesn’t understand/hasn’t reached that level of social awareness yet.”
Just to shut them up. To open up a dialogue, whereby we can talk more about the condition, thus increasing an individual’s awareness and understanding, so the next child they come across who, at first glance, appears to be misbehaving, may not actually be on the receiving end of a thoughtless stare or comment, as the individual will stop and think before they judge. And this is what I have done, on occasion, when I feel ‘safe’ that the person I’m talking to will be willing to listen and understand – and most people are interested, and want to know more.
But then the other part of me thinks, “why the hell should I? What bloody business is it of theirs?” It’s our business if our daughter is autistic, not anyone else’s. It’s not our fault they’re ignorant and rude. Why should we have to justify Tink just being, well, Tink? If her behaviour upsets them, so what? Bully for them. Especially if it’s a complete stranger, who will probably never cross our path again, like the parents at the pool this afternoon. And so, like today, I just fix a grin and hold my head high, whilst inwardly wishing the ground would swallow either me, or them, up.
So this is why, although Autism Awareness and Acceptance month is so important, we need to ensure that we are making people aware all the time, so they can accept our autistic people for who they are without judgement, and without parents and carers feeling as if they’re having to confess to some dirty little secret.
How do you deal with the stares and comments? Leave me a comment!