Skip to content

Nick Hornby’s Ex Wife Speaks About Life With Autistic Son Danny, 16

April 25, 2010

In his book 31 Songs my ex-husband, the writer Nick Hornby, spoke of the ’40 terrifying years’. It was his guess at the amount of time our son Danny will be alive, once Nick and I are gone. We both fear for his future and wonder who will support him and fight for the things he needs when he cannot express for himself what they are.

Danny was diagnosed with autism when he was three years old. He is now 16 and, alongside his severe learning difficulties, this year he has been in and out of hospital with chronic gastrointestinal problems.

He is often in intense pain and is on a fair bit of medication. We keep daily charts, we observe changes in minute detail, we adjust dosages – it is like a meticulously calibrated battle plan.

Virginia Bovell fears for the future of her autistic son Danny‘Fantastic guy’: Virginia Bovell fears for the future of her autistic son Danny

When he is well, it is as if he doesn’t have a care in the world. He is cheerfully non-verbal – he has only a few words, such as ‘momma’, and ‘diddle’ for daddy. He is also happily and unresentfully dependent on others for most of his waking life.

On a good day I am optimistic for Danny, but if I’m honest, worry often keeps me awake at night. Because he doesn’t speak, and understanding him requires close observation, I wonder who will love him enough to give him the levels of meticulous attention that a parent would.

But besides being loved by his father and me, he is blessed with a strong network of friends and support workers who I know will always look out for him.

We receive financial help from Islington Council, which means I can employ a support worker for Danny when he isn’t at school.

This money covers only eight hours a week, but I am fortunate to be able to pay for more myself. I know from my work with the National Autistic Society and with Tree House, the autism education charity I helped set up, that some families battle to get any funding at all.

There are residential care homes but many adults with autism still live with their families, even in their 50s. Parents who have given up work to support their child are faced with the awful prospect that there will be no one to fill their role when they die.

I hope one day Danny will achieve enough independence to live on his own. But he will, as far as I can tell, need some kind of care for the rest of his days.

Virginia Bovell with Danny, aged fourMother’s love: Virginia with Danny, aged four

He can dress himself, but without guidance he would more often than not choose to walk down the road in pyjamas, back-to-front and inside-out. He has a right to do this, of course, but on the other hand he has a right to be protected from ridicule, not to mention traffic hazards to which he is still oblivious.

Just like any parents, we are hoping he will have a safe, fulfilled, stimulating and enjoyable adulthood. What this means in practice for Danny is rather different, though.

Trampolining is likely to be a permanent source of joy, and I hope he will acquire enough independence to feel pride in making his own toast, cleaning his teeth unsupervisedor accessing YouTube – which he loves – on his own.

Although it has been a hard time for Danny, last summer he was reunited with an old friend. Eight years ago I took him to a local funfair. He seemed interested in a ride called Deep Impact. Kevin, the man working the ride, led Dan to a seat, fastened him in and gave him a specially organised solo experience, going at half speed.

Danny loved it, so Kevin gradually increased the pace. By the time it was operating at its violent, nausea-inducing maximum, Danny was shrieking with joy and bouncing up and down with excitement. After that, we would take Danny to the funfair summer after summer, and Kevin always looked after him.

Then adolescence started and Danny no longer seemed interested in the fair, or even going out at all. It was as if the pressures of growing up, combined with sensory overload and wariness of change, piled up to overwhelm him for a while. The sudden noise of a child’s highpitched cry in the GP’s surgery required me to physically restrain him from lashing out.

It was sometimes a struggle even to coax him out of the front door unless he knew he was going to a place he felt safe and happy, such as home or school.

Last summer he started to feel better again and suddenly, out of the blue, the Bank Holiday found Danny firmly leading his carer a mile up the road to North London, so he could experience once more the thrill of the Finsbury Park funfair.

Kevin spotted him immediately and dashed over to greet him, and Danny enjoyed two sessions on the ride.

Kevin treats Dan as a real friend, someone to be respected and taken seriously. I like to think of my son going back to the fair over many more summers, and hope Kevin will be there for him.

Too much attention has been paid to discovering the cause of autism and not enough to making sure that those who have it can lead happy, fulfilled lives within society. It is now generally accepted that genetics plays a major part. Of course there have been times I have wondered but now, for me, for Danny – and for Kevin – why it happened is irrelevant.

When I asked him if I could write about him, Kevin agreed readily, then paused, thought for a moment and added: ‘I remember all my passengers.’

In other words, yes, it was fine to write about him and Danny, but it really shouldn’t be a big deal. Kevin knows that far from being a sad or embarrassing or unwelcome nuisance who places extra demands and burdens on other people, Danny is a fantastic guy in his own right.

The spectrum of autistic disorders is so broad that children and adults with autism need a whole range of different long-term support structures, education and employment opportunities.

Sadly, at the moment, there isn’t the commitment or money to go round.

http://www.talkabout, www.,

No comments yet

What are you thinking?

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: