Monday, December 04, 2006

In Praise of Nick Hornby

Nick Hornby is a British writer mainly known in the U.S. for movies based on his books. Films like High Fidelity, About A Boy and Fever Pitch have made him a very successful author. It wasn't until a recent controversy in British politics, in which a leading politician made an insensitive joke about someone having autism, that I learned Hornby is the father of a son with autism whose family helped start a special school for kids on the autism spectrum in London called TreeHouse. During that controversy, Hornby spoke out against the insensitive remarks the politician made; it's not the first time he's done this.

Hornby's introduction to "Speaking With The Angel," a short story collection he edited, dedicated to his son Danny, and for which he donates part of the proceeds to TreeHouse and other autism programs, is one of the more powerful pieces I've read about what it means to be the parent of an autistic child, and just how important education programs and teachers are. You can read an excerpt from the introduction by clicking here. Here's another:

How do you educate severely autistic children? How do you teach those, who, for the most part, have no language, and no particular compulsion to acquire it, who are born without the need to explore the world, who would rather spin round and round in a circle, or do the same jigsaw over and over again, than play games with their peers, who won't make eye contact, or copy, and who fight bitterly (and sometimes literally, with nails and teeth and small fists) for the right to remain sealed in their own world? The answer is that you teach them everything, and the absolute necessity of this first-principles approach makes all other forms of education, the approaches that involve reading and writing and all that, look quite frivolous. Danny has to be shown how to copy, how to look, how to make word-shapes with his mouth, how to play with toys, how to draw, how to have fun, how to live and be, effectively, and TreeHouse utilizes a system that makes these elementary skills possible. Danny's education began with him learning how to bang on a table when prompted to do so, a skill that took him weeks to master. What's the point of that? The point of that is hidden in the phrase "when prompted to do so": only when a way has been found to penetrate the autist's world can any progress can be made, and now Danny listens. He can't understand everything he hears, but at least there is now a sense that for some parts of the day-- and for most of the school day -- he occupies the same world as his teachers and his peers. ...

All parents of autistic children know the terrible cycle of guilt and apathy that comes with the territory: our kids are capable of entertaining themselves for hours at a time if we let them (and sometimes we do, because we're tired, and maybe despondent), but we know that the entertainment of choice -- spinning round and round, lining things up, watching the same videos over and over again -- is not healthy or productive. But few of us have the energy to do what Danny's teachers do. We cannot create scores of different activities each and every day, all of them designed to equip our children to cope better with the lives they are living now, and will live in the future.


Maddy said...

One of my favourites! I don't think I've 'not enjoyed' any of his books even though there is wide variety of topics, you can always tell that it's him writing.
Best wishes

abfh said...

In my experience, all people, whether they are autistic or not, have some repetitive and pointless activities that help them to relax. For instance, it's considered "normal" to sit in front of the TV drinking beer after work, or to read a gossip tabloid, or to do a Sudoku puzzle. Everybody needs to have some amount of time to "veg out" and distract themselves from life's stresses.

I think it's very harmful to stereotype autistic people as "sealed in their own world" or as having been "born without the need to explore the world" just because they sometimes engage in mindless activities to relax, as all human beings do.

On this point I'd like to suggest reading Ballastexistenz, which is the blog of a non-speaking young woman who was labeled "severely autistic" as a child. She often lined up blocks (and sometimes still does) as a way to calm herself when she felt stressed. She is also, as her blog demonstrates, very much involved in the world and interested in communicating with others.

You may also want to take a look at her site Autism: Getting the Truth Out, which addresses autism stereotypes and how they impact the lives of autistic people.