Why Nick Hornby is Ambitious about Autism
My son Danny was born in 1993, and his mother and I knew quite quickly that he wasn’t the same as other kids. The worst time came when he was about eighteen months old, when he not only stopped progressing, but started to regress: he lost almost his entire vocabulary, became terrified by just about everybody and everything, spent what seemed like months slumped on his mother’s shoulder, refusing to make eye contact with anyone.
When the diagnosis came – and we were lucky in that it took only one long, scary year to get one – we found out firstly that he had autism, a lifelong neurological disorder that affects just about every aspect of how a person understands the world.
The most common description of autism is that it’s a communication disorder, but that doesn’t really even begin to explain it; a communication disorder sounds like something you have after a particularly gruelling afternoon at the dentists’ and your mouth is all swollen. But a child with autism cannot communicate with you, and neither you nor anybody else can communicate with him (an autistic child is usually a him), either verbally or in any other way, which means that he cannot learn how to talk, or learn even the simplest things about the world. And in any case, that description ‘communication disorder’ doesn’t and can’t convey some, most, aspects of the condition that make the lives of parents and carers so difficult on a day-to-day basis. It doesn’t convey the inexplicable and sometimes violent expressions of distress, the morale-sapping repetitive behaviour, the sleeplessness, the refusal to play games or leave the house or be in the same room as others - the refusal, it seemed to us sometimes, to do anything much at all.
We didn’t know much about any of that when Danny was diagnosed, and perhaps that was a blessing. You learn things by experience, slowly. What we did know was that our child had a severe disability, and when we began to investigate what was out there to help him, we found that there really wasn’t much. Nobody knew much about the condition, nobody really knew how to educate kids with autism, and even if you wanted the rudimentary and possibly inappropriate education on offer, you couldn’t have it, because there weren’t enough places anyway.
This is how TreeHouse came into being. A group of parents in north London decided that our children deserved better than anything we were being offered, because without the right education, the prognosis for our kids was bleak.
Children with autism need to be taught in painfully small steps, and the method of education we wanted for our children recognised this. Because Danny has this condition, he couldn’t copy, and because he couldn’t copy, he couldn’t learn; his education began with him learning to bang on a table in response to someone else banging on a table. This may not seem like much of an achievement, but for Danny’s parents, and for parents of any child who is severely autistic, this was a major milestone, a breakthrough more fundamental than learning to read and write.
At the heart of Danny’s education we need the right people, with the right skills, to motivate and inspire a child whose natural inclination is to withdraw from the world and watch the same fragment of the same video over and over again. At TreeHouse we have the right people – people whose devotion to their work and to our children really has to be seen to be believed, people who are trained at TreeHouse to become highly specialised in understanding, motivating and teaching each pupil, based on a painstaking observation and appreciation of the unique needs, strengths and potential of each individual child.
TreeHouse’s input into Danny’s life has been vital, crucial; without it, he may not have been able to carry on living at home, with parents and siblings whom he loves, and who love him. Sometimes, with autistic kids, you have to measure achievement in a different way: we like to think that all our kids have made amazing strides forward, but the not moving backwards can be every bit as important, because sometimes it feels as though autism is a whirlpool that wants to drag these children under and down into a world that nobody can reach.
It’s obvious that I support TreeHouse because its work has had such a profound affect on my son’s life. But I also hear from far too many families who are brought to breaking point because the right education isn’t on offer for their child. I care so deeply about TreeHouse because it has the vision and - with help - the ability to offer thousands more kids with autism, the opportunity not just to cope with, but positively learn to enjoy, our non autistic-world.
TreeHouse has well thought-through and deliverable plans to expand its vital work. But underpinning this is our need to build a permanent building.
TreeHouse runs some of the best and most innovative autism education services in England.
Sometimes it seems absurd to me that this brilliant organisation is prevented from expanding to meet the huge demand for its services, because it cannot yet afford to build appropriate premises. TreeHouse has achieved so much already without even being given the chance to exist properly yet; can you imagine what it can achieve with the right resources?
I have provided financial contributions to help establish TreeHouse and I have pledged the film rights from my book ‘How To Be Good’ to support the Ambitious about Autism appeal, but we will need more support to achieve our plans. I hope you will join me, so that together we can set new standards in education and support for all those whose daily lives are affected by this terrifying condition.
Find out about TreeHouse's partnership with Arsenal FC.
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