First Published Friday, 31 October 2008
I wouldn’t change our autistic boy for the world: An admission about their son from the ex-wife of author Nick Hornby
Last updated at 8:09 AM on 30th October 2008
Last week, the first major conference on the future of treating the 100,000 children with autism in the UK was held in London, where the question was raised: Should we try to find a cure for autism?
In the UK, only 20 per cent of autistic children are receiving specialist help.
The writer Nick Hornby’s son, Danny, who is 15, has autism. Here, his mother VIRGINIA BOVELL, OBE, explains why she feels a ‘cure’ might not be the answer.
There are many things I find uncomfortable about the notion of ‘curing’ autism.
To cure my amazing son Danny would be to suggest that there is something dreadfully wrong with him, perhaps even something we, as parents, couldn’t live with - but nothing could be further from the truth.
If someone took away Danny’s autism, it would also take away so much of who he is. And I am certain that many parents of autistic children would agree, because how can I ever tire of watching my son’s face light up with joy as he kicks leaves in the park on his way to school?
It’s a simple pleasure, but Danny - thanks to his autism - has access to a kind of rapture we, as ‘normal’ people, cannot imagine.
He has a level of pleasure way beyond the rest of humanity, and just the simplest of things - sitting behind me on our new tandem bicycle, bouncing on a trampoline or seeing his grandmother - set him off giggling with pure joy.
His enjoyment of life stems from simple things, but that is one of the things that makes him so special - and to me, curing him would be to take away all that characterises my beloved son.
Danny’s father, author Nick Hornby
As much as I praise my son’s rapture, I am aware that many families - ours included - have suffered greatly from the affliction of his illness, as it were.
There are bad days, when Danny feels sensitive to everything around him. He can’t bear loud noises or being touched, and persuading him to leave the house can be impossible. Instead, he’ll sit, with his hands pressed to his face, rocking backwards and forwards, and I can only imagine the pain he is feeling.
He does scream occasionally, if he is very upset, and sometimes he will become aggressive and I have the odd scratch and missing hairs. But these incidents are becoming less frequent. Often, he will take my hands and press them to his head, as if to tell me where he is hurting.
Even aged 15, he has only a few words, such as ‘momma’, ‘diddle’ for daddy, ‘home’ and ‘d’, which is what he calls needing the toilet, and as a mother it is terribly traumatic.
Not to be able to communicate with your child when he is in pain can break your heart - but luckily, thanks to the support of staff at TreeHouse, his special school, and our family and friends, he is able to communicate so much more.
When he wants to talk to me, he has his communication booklet, and he can flick through that to form sentences and ask for things like food, but also tell me how is feeling, if he is happy or sad.
When he was born, we were thrilled, but I had concerns from early on that he was not functioning and developing as he should. He avoided eye contact he didn’t like being touched and he was very slow to walk and utter sounds.
But the crunch came at around 18 months, when he seemed to regress and lost the few words he had learned - Nick describes it as being ‘like a computer crashing’.
Everything he ‘knew’ about the world and social interaction seemed to slip away from him, as he retreated into his own little world, developing irrational tantrums and repetitive behaviour.
I can’t put my finger on one exact day when I realised he had changed - it is more a gradual realisation that the child you adore is not developing as the other children around him were doing.
Support: Virginia Bovell (right) next to Danny outside the TreeHouse school with Katharine Dore, who helped found it, and her son Toby in 2006
There is a tremendous sense of loss at first, not just for the child he was, but for the person he could have been in the future. But now, loving Danny as we do, there’s no way we would change him.
It’s impossible to imagine him without autism, and while it is often hard, I don’t think I would ever want to cure him.
Instead, I would argue that it is vitally important to offer support and development to every child, and indeed family, affected by autism. And that is why I helped to set up TreeHouse, a special learning centre for autistic children.
There is, in this country, a lack of a rational, strategic response to autism from the health and social services.
For so long, autistic children have been hidden or not talked about. In the past, people with autism were ‘written off’. Now, we know that autism affects one per cent of the population.
We can’t write them off - with specialist help, they can have a career and look after themselves.
In the past, once children had been diagnosed, the parents were left to fend for themselves. Hours of screaming, lack of communication, and no emotional connection with your child can be soul destroying, but why not show families there is hope.
If nothing is done, an autistic child can grow into a frightened, and potentially even dangerous, adult.
Motherly love: Virginia Bovell with Danny back in 2001 when he was eight
We have no idea how many autistic people have fallen below the radar, but we do know that 27 per cent of autistic children are repeatedly excluded from school, and adults with autism are seven times more likely to come into contact with the criminal justice system.
Of course, you ask yourself why it has happened to your family. We don’t know what causes autism, but we do know that it is increasing.
Scientists are confident that there is a genetic susceptibility, and this seems to be triggered by a variety of causes - environmental, diet, possibly too much foetal testosterone, and, controversially, the MMR vaccine.
What we do know is that if a child receives help, then their symptoms can be managed. With the help of TreeHouse, Danny has gone from a child who would not leave the house, to a confident teenager. He enjoys the world around him.
An autistic child is no less deserving of a mainstream education than any other child. They don’t need a special school, but they do need a trained teacher. My son has thrived from such an environment.
On a Saturday, we get up, tidy the house and then go to a cafe for lunch. In the afternoon, he’ll go and watch Arsenal play.
Then, at night, he’ll sit next to me watching his portable DVD player, and I’ll do my sudoku.
Occasionally, he reaches over to touch my hand and smiles at me. My son doesn’t have a ‘disease’. He is unique, special and happy. So why do I need to cure him?
• TREEHOUSE is launching a social networking and information website for parents and professionals, supported by TalkTalk, in January 2009. To register, go to www. talkaboutautism.org.uk
Interview by Diana Appleyard
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