Friday, September 7, 2012

Guest Post: A Few Things It's Best Not to Say to Parents of Children With Autism

Nobody's perfect. Especially me. We all say things that can be misinterpreted by others at times - stuff that we don't really mean or haven't fully thought through. Things that are well-meant but that can inadvertently make the recipient feel awful. Some people have a need to fill in the gaps - say fluffy stuff to keep the conversation going - or to try to "fix" the other person and make them feel better. A very titchy minority of people are just plain nasty. We're all guilty, now and again, of listening to others with our own agendas playing at full blast over what they're saying. Some people just think that the less said, the better!

Social interactions are full of nuances and expressions and body language. X says "blah" and Y responds with "blah diddy blah" but if the correct intonation or body language isn't employed than we can all get into a terrible pickle.

I'm sure that most things that people have said to me or any other parent on the subject of  our children with autism have been pretty well-meant. On the whole, people want to understand, to listen and to share in our highs or empathise with our lows. But there are some things that people say that, however they are meant, just get me where it hurts. I knew very little about autism before I met my children. Generally people are slightly better informed these days but, unless you live with someone with autism, there are just some things that should fall into the "Approach with Caution" category. I would, however, hate to think that people are walking on eggshells when talking to me about my boys so I've made a little list of the things that are better not to mention when talking to a parent of a child with autism. And I've thrown in a couple of do's too because nobody likes a whinger!

You look tired
Not particularly helpful but thanks for noticing. Yes I am tired. I'm knackered. And so would you be if your child was awake half the night and then you were constantly on red alert, never able, for safety reasons, to just leave your child to his own devices.

There are so many children with diagnoses these days - I don't understand why so many people want a label.
You think I got my children labelled for the good of my health? Hmm. Well actually I wanted to get my kids the help they need from as early on as possible to give the chances they deserve.

He looks fine - if you hadn't told me he has autism I'd never have known
Autism is an invisible disability. It's all the bits that you can't see like the extreme anxiety that give it away. But did you not think the flapping and screeching was a little suspect?

Did you give him the MMR - we gave our kids separates
Well done. No I did not give him the MMR.

You are amazing - I couldn't do what you do.
Thanks. But I am not. I am doing what any parent would do which is my best. Of course you could do that if you had to.

He'll get better as he gets older.
Sigh. No. Autism isn't an illness. It won't just go away. Some things will get easier for him. Some things will get harder.

He'll sleep when he's tired/ He'll eat when he's hungry
Both statements are false when talking about autism.  Some people, particularly people who've had their own children, like to put their experience of what their children did onto all children.

Oh yes my child does that too
Yes I'm sure he does but does your child do this this this this this this this and this too?

They're all brilliant at maths
He has splinter skills - some way above the average and some way below. While J does not have any academic delays, autism is still referred to as a Learning Disability. It's all well and good being able to do your 143 times tables but if you can't tolerate sitting in a roomful of people.... Not all children with autism have superpowers.

Have you tried ear defenders/lavender oil/etc
Sigh. Did you really think I hadn't thought of that when J throws himself to the ground screaming every time he hears a siren. And, believe me, I've tried nearly every sleep aid known to man - I would sacrifice lactating porcupines in his bedroom if I thought it would help him.

Wow, I wish.... could read as well as J can
Thanks. I wish J could live comfortably in the world and have friends.

You needn't have worried - he's fine at this party/dinner/gathering
That'll be those hours of preparation and visuals and the fact that Dave and I are tag teaming him constantly while we're here and unable to give anyone else - including our other son - our attention. And then when we're safely back home, the fall-out from all that stress will commence in full.

What's his name?
He's standing right here - ask him!

Our friends did a Gluten and Casein-free diet/Sonrise/Tantric Cat Bouncing/ whatever  - and their child is totally cured.
I'm happy for them but I don't believe autism is cureable. I have tried the diets but my walls looked like the Turner Prize after a week of gobbing and puking. And that toad-therapy course in Kazakhstan is a tad too expensive.

That child needs a good smack.
I hope that you are reborn as a dung beetle.

My son shouldn't be here - it's like a lunatic asylum
Oh. Did you actually mean that my son and all these other children in this ASD specific nursery that your son is attending are lunatics....! (a mother really did actually say that to me!)

We didn't invite G/J to .....'s party (which happened 2 weeks ago and you've already heard about from everyone else) because we knew he wouldn't want to come.
Ouch. I'm sorry that we are party poopers but please invite them if you're inviting the whole class anyway and then let them say no.

And my least favourite:

Autism? Never heard of it.
Do you actually live in the silt at the bottom of a pond?

And now for the Do's. It's not all negative. There are plenty of things that are ok to say to a parent like me. So here are a couple of examples:

Do you want a glass of wine?

Do you want another glass of wine?




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