Wednesday, 30 January 2013

Ditch the bungee rope: on 'growing out' of autism

A few weeks ago a study came out that appeared to make a startling claim: some children are capable of "growing out of autism". The phrase was widely used across the media and intended, presumably, to confer hope on parents sitting at home desperately trying to coax a few words, or a fleeting moment's eye contact, out of their children. It implied that there was still hope that your autistic child might one day become normal. I've always had a fancy for rewriting the Pinocchio legend in terms of autism, and these articles certainly gave me plenty of material.

On closer inspection there are a number of problems with this assertion. Firstly, as Emily Willingham points out, nowhere in the original paper in The Journal of Child Psychology and Psychiatry is the phrase "growing out of autism" actually used (though the journal's editorial does talk about 'recovery'). The scientific analysis is best left to people who, like Emily, know how to do it. I'd merely observe, from my experience as a parent, that while both my children have made good progress over the last few years, neither of them are any less autistic than they were as toddlers. And here's where we approach the real core of the issue.

Underpinning the notion of growing out of autism is an unhealthy presumption that autistic people can only make progress if we can somehow engineer them to be less autistic - to "grow out" of the condition. We want to tie them to a bungee rope and drag them back towards normality. (Having sprained an ankle the only time I tackled a bungee rope, I am only too aware of the full implications of this metaphor). Rather than valuing their abilities, we focus on their disabilities and how we can eradicate them. It's indisputably a good thing if we can teach a non-verbal autistic person to speak - or, failing that, to communicate by other means - but this doesn't mean they've become less any autistic. It simply means that they've learned a new skill.

And this is the truth about how autistic people "grow out" of autism: they don't. Autistic adults who integrate into society - and there are many who thrive - will talk about how they learned to cope. They develop strategies so they can 'pass' regular society. They learn to wear masks. Like emigrants who develop the ability to speak a second language fluently, they can be adept with their acquired skills even if they never truly resemble a native. In situations of extreme stress, or where they are forced out of their learned routine, the autism can become as debilitating as it was when they were children.

I question why this obsession with growing out of autism persists even when we have agreed to stop assuming that people "suffer" from autism. It suggests that we still have a way to go before we accept what autistic people can contribute to our society and stop viewing them, tacitly, as retarded or disadvantaged. The full name of the condition is Autism Spectrum Disorder: the focus of the treatment should surely focus on the last word of that phrase. There are plenty of examples of people who are on the autistic spectrum and lead an orderly life. They should be celebrated not because they have grown out of their autism, but because they have grown into it.