When I found out that my son is autistic, I barely knew what autism was. I’d seen Rain Man and I’d read The Curious Incident of the Dog in the Night-Time, and that was about it. I was almost entirely ignorant. But as life carried on, what I had been told began to make sense.
Here’s how I found out, back in autumn 2010.
The warning rash
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, and 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 when I checked them with a glass pressed to the skin, they didn’t fade. That meant it was the type of rash that you are told, as a parent, to be vigilant about. A rash that doesn’t fade when pressed is a potential warning sign of meningitis. 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 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 what I read made sense. I could see that the diagnosis the doctor had suggested was right.
It made me sad to read the statistics – the prospects for employment, the prevalence of bullying, and so on. 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 and of vulnerability. Fear of other people 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.
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 2013 I took part in a Thames river swim organised by a friend to raise funds for Ambitious about Autism.
- The National Autistic Society – I 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 over the years:
- Yellow Submarine – brilliant Oxfordshire charity that runs a holiday activity scheme for children aged 11 and over with learning disabilities and autism, and also offers training and work experience. There are Yellow Submarine cafes in Oxford and Witney. Do pop in if you get the chance!
- 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