When he was younger, he’d line up rows of straws and twiddle them in turn between his hands; now he loves nothing more than to have his toys taken apart (or dismantle them himself) and see what’s inside. Sometimes he even puts them back together.
Over the years, my son Tom, who has autism and is now eight, has gone through different phases with his toys, like any child. He’s always been fond of things that light up and he likes squidgy sensory toys and mechanical toys – things with wind-up mechanisms or motors and axles and cogs. I never would have thought that he’d learn to comment on whether toy cars are pull-back or friction-powered – but he does.
Some things he was once terrified of now fascinate him, such as fans and bubble machines. He also likes to arrange his toys or their constituent parts – maybe it’s a fond maternal eye, but I do love to see these arrangements. It seems to me that sometimes there’s an artistic (or scientific? Or both?) sensitivity and precision to them. Sometimes, though, it all turns into a crazy tangle! I thought I’d put together some of the pictures I’ve taken of his games down the years.
Sometimes he pimps his toys, like these creations – wheels and axles from one kind of toy, bodies from something else.
Here he is with another creation – a spinner.
Lining things up is good, especially with the help of a suitable wall.
The line below is of robot vacuum cleaners. Or he was pretending they were, anyway.
Not sure what these sensory animal toys make of the morass of other stuff they’re warily eyeing up.
Sometimes, it all just gets a bit chaotic…
But sometimes, the effect is rather magical.
Soft toys do have their place, too. Well, Blue Bear, Tom’s autism awareness bear, definitely does.
The very favourite toy of all is the ipad. When it got broken once, it was necessary to make do with this substitute while it was mended…
Insides of things are sometimes just as important and interesting as outsides.
Sometimes it is essential for alien eggs to live on the kitchen table for a while…
Has everybody seen Kramer vs Kramer? I watched it again about a year ago, as part of my research for my (nearly-finished) work-in-progress, which is partly about the aftermath of a custody battle. I was talking about it with a friend in a cafe a week ago when something unusual happened: the guy at the next table chipped in to tell us how that film had changed his life.
I’d just been talking about how I’d gone back to the book on which the film was based, and the case it makes for how, under some circumstances, the father should get primary custody after a split. Our neighbour at the next table was American, about my age – a 1970s child. He told us his parents had split up around the time Kramer vs Kramer came out and he had been about the same age as the boy in the film.
The original plan had been for him to live with his mother when everything was settled, but he had been living with his dad for a few months when his mum came to him and asked him who he wanted to live with: her, or his dad? And he chose his dad.
She’d asked him because she had seen the film and had been so affected by it. ‘A boy needs his father,’ she said.
So how had all this worked out? All right, it seemed – though it had meant the boy had to get on a plane to see his mother, which happened around three times a year.
Looking back from an adult’s perspective, he wondered if he’d understood the question in the way that she had meant it, as a choice between his parents. Perhaps he had really thought she was asking, ‘Do you want to stay here with Dad in the place you’ve got to know, or come with me to a place you’ve never seen?’ and, as children do, had plumped for what seemed most familiar, the least upheaval, at the time.
Stories are powerful things and sometimes they change lives…
I expect that for all parents of children with autism, there is a point at which you realise that life has changed, and it is never going to change back again. This is when you finally recognise that you are going to have to learn about something you do not understand, and you are also going to learn to live with it and love it, because that something is autism and (you now know) it is part of your child, and your family and so, indirectly, of you too…
At first, let’s face it, this is a shock. Acceptance, maybe a degree of illumination, comes later. But at that moment of recognition – this is no longer something remote that happens to other people, it is real and it has happened to you and will carry on happening – it is as if a fog has suddenly descended, and you can see no way out.
Because all you know is what everybody else knows – Rain Man, The Curious Incident of the Dog in the Night-Time – and it seems that what you’ve just been given is Bad News, although at the same time life carries on from where you left off and, perhaps, what you’ve just been told makes sense of some hitherto unacknowledged aspects of what life was like before.
Here’s how I found out.
The warning rash
It started with a rash – a non-fading rash, the type you are told, as a parent, to be vigilant about and test with a glass pressed to the skin (if the spots fade, it is not ominous), the potential warning sign of meningitis.
My son Tom, three and a half years old, was ill, with a temperature, lying on the sofa at home. He was clearly unwell, but I thought it was one of those sudden fevers that young children get, that often pass as quickly as they came.
However, he wasn’t really capable of telling us clearly how he was feeling – his ability to express himself freely was very limited. He understood much more than he could say – we had learned to communicate with him by asking him questions he could answer ‘yes’ or ‘no’ to. He sometimes echoed other people’s speech, which could give the deceptive impression that his command of language was greater than it really was.
That day, there was no obvious sign that whatever he’d come down with was anything out of the ordinary… until I saw the rash. I only noticed it because I had taken his t-shirt off to help him stay cool. It was just three spots, which didn’t look too bad, but they didn’t fade. I knew at that point I needed to get him checked out, and quickly.
At paediatric A&E, the medics initially seemed fairly relaxed and hopeful that it would turn out to be nothing too serious; after all, Tom didn’t appear to be seriously ill. He was off his food and drink – not a good sign – but he certainly didn’t seem to be in pain.
The mood changed as soon as his blood test results came back. These indicated that he was fighting a very serious infection. The medics seemed slightly bemused by how a child who appeared to be nothing more than a bit under par could actually be in such a bad way.
The next day he was diagnosed as having a ruptured appendix. That was what had caused the rash – the infection had spread into his bloodstream. Once the cause of his illness had been established, he was booked in for surgery straight away. This was the NHS at its best – dealing with an emergency, saving a life.
It was the last op of the day, and it took a long time because they had to clean out Tom’s insides. My other half was back home, looking after our daughter; I sat by myself in an otherwise empty waiting room, reading Victoria Beckham’s autobiography, unable to do anything other than pass the time. Sometimes a book is exactly what you need, and at that point, that particular book was an effective distraction. I have retained a special soft spot for Posh Spice ever since.
When it was all done I saw Tom and met the surgeon. He looked shattered; I thought of the intense concentration it must have taken, to ensure that every last trace of infection was removed. And I was profoundly grateful, and relieved that it was all over.
Questions and answers
But then, a few days later, a paediatrician drew me aside. He said the nurses had made some observations about my Tom’s behaviour while he was on the ward recovering from the operation; did I have any concerns about it?
Certainly, we were worried about Tom’s delayed language development, and had already had some communication about this with health professionals, but I wasn’t quite sure what the doctor was getting at. Talking was clearly a problem, but on the whole, Tom was a placid, even passive child – so why the question about behaviour?
We were outside in the garden area; Tom was much better by this point, freed of the various tubes and wires he’d been attached to post-op, and was playing on a bike. It was reassuring to see him like that, the doctor said. I was offered an out-patient developmental assessment, which I gratefully agreed to. But still, something niggled… I knew there was a further question I had to ask.
It wasn’t until Tom was being discharged that I got up the nerve to ask about what exactly the nurses had observed. Repetitive behaviour, I was told: twiddling small objects in his hands. Oh yes, I said. He does that all the time. What could that mean, then?
The doctor said carefully, It could suggest an autism spectrum disorder.
And then I went home in a cab with Tom – my other half was taking our daughter to her swimming lesson. The weather was awful; it had been tipping it down. They were excited to notice a couple of rainbows, but I felt that I had been plunged into a world of black and white.
That evening I googled autism. And that was how I found out.
It made sense. It made me sad to read the statistics – the prospects for employment, the prevalence of bullying, and so on. And it still does. But over time, the sense of gloom I felt that night has receded. I think it was probably shock as much as anything. And fear: fear of the future. Fear of the unknown. Fear of other people, too, and what they might do.
I won’t say those fears were all groundless, but there was also so much to hope for and be grateful for: so many blessings to count. I’ve come to realise, since then, that the calmer and happier and more loving I can be, the better things tend to go. I know that sounds really obvious, but it’s harder in practice than in theory!
And so here we all are, with our much-loved boy, as lucky as anything. We’ve been helped along the way by some great people – not least the staff at Tom’s excellent school – and some brilliant charities:
Ambitious about Autism, which supports children and young people with autism and their families. In a few days’ time I’ll be taking part in a Thames river swim organised by a friend to raise funds for Ambitious about Autism – here’s our JustGiving page. I’ll let you know how we get on!
The National Autistic Society – I recently did an EarlyBird course with the National Autistic Society – this brings together parents and carers with staff from the child’s school to learn about autism and strategies that can help to give children the best possible chance to thrive.
I discovered the websites of both Ambitious about Autism and The National Autistic Society on that first evening when I started to try to find out about autism – they do a great job of raising awareness and providing information and support. Here are some more charities that have given us invaluable help:
Guideposts Trust – runs terrific holiday playschemes for children with disabilities. Tom absolutely loves going to his holiday club.
South and Vale Carers Centre – fantastic volunteers provide advice on filling in DLA (Disability Living Allowance) forms – which are pretty daunting, and very long.
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.
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.