When you find out your child has autism (or indeed, any special needs condition), and are coming to terms with that new reality for yourself and your family, you are guaranteed to also find yourself wading through a sea of platitudes from well-meaning friends, family and strangers.
I know it can be hard to know what to say when faced with someone upset because their child has severe problems, but I’m going to suggest at the end of this piece some better responses than the following three platitudes:
“It could have been worse” / “At least your child isn’t [insert seemingly worse condition]”.
You’re effectively telling the parent to stop complaining, to stop sharing their troubles. You’re telling them they are over-stating how bad it is, since there are so many worse things out there. The parent isn’t going to now be OK since you’ve pointed this out to them (and I guarantee they’ve already thought it of their own accord), they’re just going to realise that you don’t understand, or want to understand, how hard it truly is.
And just how hard is it, if you must compare it to other “worse” conditions? How’s this: “Surveys have shown that parents of children with autism suffer the highest stress levels of any condition including terminal illness.” And here’s a list of some of those stresses if you’re not aware of where the problems lie. So be careful when you tell someone it could be worse, because it’s quite possible that they think it really couldn’t be.
“Every child has issues / is special / is different.”
Again, it’s going to come off as if you’re not listening to the person who is talking to you. Of course they know every person is different and has their own challenges, but how is that helping them? I realise that, like the previous platitude, the effort is to put things “in perspective” for the suffering parent. But comments like these just tell them other people are hurting too, they don’t do anything to alleviate the pain of the parent in front of you. Again, you’re just going to make them think you either don’t understand, or don’t want to understand.
“You got the child you were meant to get” / “everything happens for a reason”.
I find this one the most upsetting. As a parent what you hear is “you deserve or can cope with the horror you are living, stop complaining about it”. I’ve had so many people tell me that I have my son because I have the inner strength and patience to cope with him. I do not! I have had breakdowns, I have had depression. I have had days where I watched every second tick by, waiting for the day and my nightmare to end, only to go to sleep eventually, not wanting to wake up because I have to do it all again the next day.
I learnt to cover up how hard it was for me because all I got was unhelpful platitudes. I had to learn the patience I’ve developed, I’ve worked so very hard to become the best mum I can be to the child I have. I was not simply born with these capacities. I understand that people are trying to tell me how capable I am when they say I got the child I was meant to have, but this would be better conveyed in other ways – I would prefer recognition for that hard work rather than the notion that I was always meant for this life.
So what do you say to parents like me, who find out their child has autism, or indeed any special needs? Let me suggest some ideas.
Let the parent talk. Actively listen to how they feel and what they’re going through. Avoid interrupting if they’ve paused to gather their thoughts or take a breath.
Show that you have heard them and are interested in what they are sharing, by asking questions about things you don’t understand, or want to know more about.
Let them know that if you can help, you will. Is there some special skill you have which might make their lives easier – maybe you can help them with legal issues, or you have connections to certain people, or you like cooking or driving or other tasks they are struggling with. They may turn down your help – I did this a lot because I felt other people trying to help often just made things worse (which was at times true). But the offer of help, in and of itself, is a kind and appreciated thing.
Often best done physically considering how hard it can be to find the right words in this situation. Hug them, rub their back, hold their hand, let them know they are not as isolated as they feel.
Let them know how great you think they’re doing. Find something they’re doing well in the situation and let them know you’ve noticed it. Try not to let it come across as if how hard they’re finding everything else is irrelevant or going un-noticed though – use the previous four suggestions to avoid that impression coming across.
All this advice comes from personal experience, and from talking to other parents who have gone through the same thing. I do not hold myself out as a trained counsellor. What I’ve gathered together here is particularly guided by the responses I’ve seen from people who know first-hand what it’s like to have a special needs child, when they meet someone else who is newly coming to terms with it; compared to those responses from people who mean well but don’t know what it’s like. Thoughtful silence goes a lot further than a few easy platitudes.