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.


Temple Grandin, autism and the power of early intervention

There’s an amazing video on the National Autistic Society website of Dr Temple Grandin giving a speech. The video is amazing not just because of what she has to say, but the fact that she can say it at all.

Most of us would be pretty scared of addressing a hall full of people, but here is someone who is autistic, for whom communication is particularly challenging, speaking in public at length, fluently and lucidly and with such authority… She’s incredibly impressive.  And it just goes to show what someone with autism can achieve with the right kind of support early on.

You can find the video of Temple Grandin’s speech, and some more about her, on the National Autistic Society website.

Temple Grandin: early encouragement, later success

Temple Grandin didn’t speak  until she was three and a half, and when she was diagnosed her parents were advised to put her in an institution. They didn’t. They found a speech therapist for her. A childcarer played endless games with her and her sister. In the speech recorded in the video, which took place in June this year in Reading, she says that one-to-one attention is what autistic children need in order to learn.

She gives some insights into what it’s like to live with the sensory perception difficulties that often go with autism: the pixellated vision, the challenges of trying to interpret other people’s apparently super-speedy speech. She also makes the point that autistic children need to be stretched, and looks back to her own fear about going to stay on her aunt’s cattle ranch.

Encouraged to go by her mother, she went, loved it, and ended up forging a career as a designer of livestock-handling equipment, and becoming one of the best-known people with autism in the world. I haven’t seen the film about her (Temple Grandin) starring Claire Danes, but I want to – her story is so inspiring, and Claire Danes is such a good actress, it should make for a great film.

Changes to the system for children with SEN: cost-cutting masquerading as efficiency?

But what about all the children with special educational needs (SEN) who don’t get that intensive help early on? We know that early intervention makes a big difference, but the system for allocating resources to children with SEN in the UK seems to be designed to slow up access to help.

Applying for a statement is a long and bureaucratic process; evidence of need needs to be absolutely watertight, and gathered over time. But once you’ve got a statement, it is legally binding; the level of help identified in the statement has to be provided.

Now the government proposes to sweep the system away. It says it wants to make things better, but there are so many unanswered questions. Will whatever replaces statements also be legally binding?

Ofsted seems to have decided that too many children are labelled as having SEN. How did it decide? Did it ask the parents? And if children need help, they need help, don’t they, regardless of why? Are they going to get it? Or is this really just another cost-cutting exercise, masquerading as improved efficiency?

Happy 50th birthday to the National Autistic Society

I renewed my membership of the National Autistic Society today. I’m the mother of an autistic child, and when I was trying to find out more about autism in the run-up to getting a formal diagnosis, the National Autistic Society website  was where I ended up – and I’m so glad it was there!

Pretty much all I knew about autism before that was what I’d gleaned from watching Rain Man twenty-odd years earlier. Clearly I had a long way to go. I needed information, and the NAS website is a brilliant source of that, right through from the basics to the latest research and what’s going on in your area. The charity does loads of other things too, including running six schools and a helpline, and it has lots of local branches.

The NAS turns 50 this year. There’s a video on the about section of the NAS website in which Ilse, one of the founder members, describes how she and other parents got together in the early days of the society.

The psychiatrist who diagnosed Ilse’s daughter with autism suggested putting her in a home. That was not something Ilse and her husband wanted to do. The psychiatrist also suggested getting in touch with the then very new society for autistic children. Their daughter went on to be a pupil at the embryonic National Autistic Society’s first school, which taught ten children.

It used to be thought that autistic children couldn’t be educated, and now we know that isn’t true. But if that group of parents hadn’t got together in the early 1960s, it might be a different story.