I've read a lot of discussion about people's reactions when a friend/acquaintance/colleague/family member says their child has autism. It's a pretty passionate topic for a lot of mums and dads, and most would agree that the "what not to say" list includes a few of these:
Oh no that's terrible
What do you think caused it?
Are you sure? She looks normal to me!
Will he outgrow it?
Gee you hide it well!
The reactions that tend to be the most praised and appreciated often come from parents who have a child with special needs or are very close to someone who does. Probably because they have heard it all before!
Here's the secret:
It's absolutely OK to not know what to say. It's even OK to say "I don't know what to say". If your response is a caring one you're unlikely to cause offence.
If you'd rather not end up the subject of a vent in a private Facebook group, here are a few gentle tips:
Forget everything you already know about Autism
There's a saying that goes
If you've met one person with Autism, you've met ONE person with AutismEvery single experience is different. Even if you've been through it yourself, it will be different for every other parent. Before you question it because your sister's friend's cousin-in-law's son has Autism and is the complete opposite, just listen. Every child (and adult) with Autism has their own challenges. Just because they share a diagnosed disorder doesn't mean they're not just as unique as the rest of us. There's a reason it's called a SPECTRUM.
You may have heard that vaccines cause Autism. They don't. End of story. Just don't go there.
It's ok to be curious
I may only be speaking for myself but if you'd like to ask questions about our experience, go ahead. I'll be more than happy to answer as best I can. If you're wondering whether she flaps, if she has trouble socialising, if she has any intellectual or language challenges - just ask.
What you see in public is often just the tip of the very large iceberg. We're not hiding it, we're using many many strategies to manage it. Don't assume that because my child looks perfectly fine she's not heading for full meltdown if we're not sticking to the schedule, or making sure she gets a break when she needs one. By all means feel free to tell me we're managing very well right this second, but that may not be the case in 5 minutes time.
So what is the best response? An honest one. If you think that sounds really tough, say so. If you're not sure what to say, say so. Don't pluck a platitude out of thin air because you think that's what you should say. And if you need to think for a few seconds before saying anything, go ahead. It isn't the end of the world, she's still the same child she was yesterday and the last time you met her. I won't bite your head off if you ask what that means for her, or for us as a family. And although I don't really need you to be sorry, I do understand that you're not necessarily pitying me, and I understand that you might not know what to say. Until a few years ago I didn't really understand it either, and I probably would have said all of the "wrong" things too.
And a little note for other ASD families:
People won't always give you the response you want. The vast majority of the time they don't know what to say, and if they say something "wrong" please take a moment to consider that they might just not understand. Comments like "are you sure, she looks normal" almost always come from a caring perspective. Before you get mad, think back to before you had children and what you might have said in their situation. There's no perfect answer, there's no perfect person. Take the opportunity to educate them and put a positive spin on it rather than fume about it for a week and next time they'll know a bit more and do a bit better.
I'd love to hear in the comments the best reactions you've had or heard, and what you think is the best response xx