Nick Hornby: We need all the friends we can get
From a speech by the novelist at the National Autistic Society fringe meeting at the Labour Party conference in Bournemouth
Your support helps us to tell the story
From reproductive rights to climate change to Big Tech, The Independent is on the ground when the story is developing. Whether it's investigating the financials of Elon Musk's pro-Trump PAC or producing our latest documentary, 'The A Word', which shines a light on the American women fighting for reproductive rights, we know how important it is to parse out the facts from the messaging.
At such a critical moment in US history, we need reporters on the ground. Your donation allows us to keep sending journalists to speak to both sides of the story.
The Independent is trusted by Americans across the entire political spectrum. And unlike many other quality news outlets, we choose not to lock Americans out of our reporting and analysis with paywalls. We believe quality journalism should be available to everyone, paid for by those who can afford it.
Your support makes all the difference.I was hesitant to come to talk on a subject which I now know a great deal about: my son, Danny, who is 10 years old and autistic. The reason I was hesitant is not because I am worried about speaking in front of you lot; it's because I'm speaking in front of Danny's mum, who knows even more about Danny than I do.
Danny's condition is such that his mother's expertise goes way beyond what one would normally expect from a mum. In the past month Danny has been seen by a paediatric gastroenterologist, an eye specialist, a speech and language therapist, an occupational therapist, he's received an updated Statement of Special Educational needs from the LEA (with reports from two educational psychologists), he attends a special school with the input of a behaviour analyst, and in all he has a team of eight teaching professionals working with him at school and at home.
What has shocked me most is the inescapable sense that many of the professionals that parents have to deal with are regarded as the enemy, and that if parents are to get anywhere, the enemy has to be defeated. I don't believe that these people are bad, so what is going on here? The answer is that they have been forced, by circumstances beyond their control, to turn into gatekeepers: gatekeepers who have always to be thinking of how little they can get away with providing, rather than how much the child needs.
If there was adequate funding in the system, this wouldn't be happening. No parent is going to fight to access speech therapy just for the hell of it. We need speech therapy because we want our children to speak - to say their own name, or to ask for the toilet, not because we want our kids to go to Rada. Professionals become gatekeepers because there isn't enough to go round, not because parents are demanding too much.
Parents of children like my son really don't need enemies, believe me. We need all the friends we can get.
Join our commenting forum
Join thought-provoking conversations, follow other Independent readers and see their replies
Comments