Tom pre-diagnosis, twirling flowers in his hands: we had no idea this repetitive play was a symptom of autism
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.
More about autism from my blog