Parents of children with autism: so many differences, so much the same

All children with autism have difficulties in three areas – social imagination, social communication, and social interaction, the so-called ‘triad of impairments’. So, for example, an autistic child playing with a toy car might not have the natural instinct to make it behave like a play version of a real car – racing and crashing with other cars, say. Instead, the toy car is a little thing that looks like a car, and has wheels that go round.

Not having social imagination is not the same as having no imagination; children with autism can have ideas and use language in ways that are startlingly original. But it does mean not being big on the kind of imagination that lends itself to play with other children.

I’m putting in lots of qualifications here because once you get through the triad of impairments, all children with autism are very different. Hence the headline of disability campaigner Nicky Clark’s article for the Independent: ‘When you’ve met one person with autism, you’ve met one person with autism’.

That’s true of parents of children with autism, too. Obviously we’re all very different. And yet we all have some big things in common. So when I watched Nicky Clark’s recent interview on the Ambitious about Autism website there was a lot I recognised. What she said about her reaction to the diagnosis struck a chord… that sudden realisation that you have a child with autism, and all you know about autism is Rain Man. I think, too, the problems of taking children who behave differently out in public must be familiar to many if not all parents of children on the autism spectrum. And one of the key problems is everybody else’s reactions.

Other people: sometimes lovely…  sometimes part of the problem

Sometimes people are delightfully tolerant and laid back, and sometimes they can be quite snotty, especially if they think what they’re seeing is bad behaviour. What they don’t realise is that the parent of an autistic child is managing an extraordinarily difficult balancing act. The baseline is that the child needs to be kept safe. The hope is that whatever the outing is, it will be a success, that the child will learn something about how to behave in the outside world, or maybe even enjoy the experience, and the family will be able to enjoy some time together. And the fear is that one thing after another will go wrong and the child’s anxiety will escalate into a total meltdown, which is always the looming threat in the back of your mind.

Oh, and just one other thing: I wish people would stop trying to insult politicians by suggesting or stating that they’re autistic (a certain kind of commentator seems to go in for doing this very aggressively online). I mean, come on. I guess they think they’re being funny or, most likely, they’re not really thinking at all. Or maybe they actually like being nasty. Always a possibility.

What will happen to my child who is on the autistic spectrum when I’m not here?

Another familiar worry that Nicky Clark refers to in the interview on the Ambitious about Autism website is this: what will happen to my child with autism when I am no longer around to look after him or her? I think all parents fret about what would happen to their children if they died (and many of us push that fear to the back of our minds, tell ourselves it won’t happen, and don’t do anything about it). But if you have a child on the autistic spectrum, the worry becomes, not what will happen to my child if I die, but what will happen to my child when I die.

If you are a parent to a child who is going to face major challenges in living independently, you lose that assumption that if you are around till they reach adulthood, they will ultimately be able to carry on without you. I’m sure empty nest syndrome is very hard, but getting to that point is a sign that you have done what a parent is there to do – you have nurtured your child through to independent adulthood – and for some families getting to that point is an almost impossible challenge.

Parenting involves letting go, and if your child is particularly vulnerable, that process is much more fraught. Ultimately, whatever provision you make, you feel that your child is going to end up dependent on the kindness of strangers. Will they be kind? In the end, you can only hope they will.

But, of course, in the meantime, you can try to help people to understand, which is what Nicky Clark does so well. Women don’t always rush to stand up for themselves, but by God we’ll stand up for our loved ones, and I foresee her being an indefatigable campaigner for years to come.

Somebody else who deserves a big vote of thanks for helping to raise awareness of autism is Louis Theroux. My husband and I weren’t quite sure what to expect from his recent BBC Two Extreme Love documentary about autism, but found ourselves nodding along in recognition; there was just so much in it that was familiar.  I really liked the approach he took, of being a sympathetic listener.

The sunlight on the wall

I was very touched by what Nicky Clark had to say about the special moments, and that rang true, too. My son has a lack of guile and spite that is really quite astonishing, and I get the impression that this innocence can often come hand-in-hand with autism. I was interested, too, in what she had to say about the ability of people on the autistic spectrum to see straight through to the heart of other people, past all the peripheral and superficial aspects.

My son strikes me as being very good at picking up on non-verbal cues. If there’s stress in the air, he picks up on it without anything being said – I know that all children do that to some extent, but he’s particularly sensitive to the atmosphere. And he would be unlikely to be beguiled by someone pretending to be something they were not, because he wouldn’t really be drawn in to the pretence in the first place. I’ve seen other parents comment on this, too – there can be an otherworldly quality to autism. With my son, I sometimes wonder what he is taking in that I am oblivious to.

One of the people who works with my son told me one day that he’d seen a patch of sunlight shift on the wall and started laughing. She said she would have loved to have known how he had perceived it. I’d love to know, too.


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