Recovery: a conflicted position


My eye was caught last week by a story that claimed some children with autism 'recover' as they grow up. It was based on a study th...

My eye was caught last week by a story that claimed some children with autism 'recover' as they grow up. It was based on a study that found that about a third of people who were diagnosed in childhood later lost the diagnosis and, according to the report, were 'no longer considered autistic'. It added that it was unclear whether this was due to a 'mistaken first diagnosis or actual changes taking place in their brains'.

The contention that people can 'recover' from autism is problematic. In the first place it is drawn from the idea that autism is an affliction that needs to be cured, which many autistic people reject. Of course some autistic people really do suffer because of their autism, whether from extreme loneliness, uncontrollable anxiety or the hazards that arise from a poorly developed sense of danger. Nobody would wish to deny these people and their carers the hope that something might one day come along to make their lives easier.

When my children were first diagnosed, I fervently hoped their conditions would improve to the point where they were able to live independently, hold down careers and experience all the pleasures (and trials) that relationships bring. And yet I feel profoundly uneasy when the word 'recovery' enters the discussion. It seems too black and white, implying a clear divide between 'autistic' and 'non-autistic' when the distinction is much more opaque. It restricts people's understanding of autism to the visible signs, which is at odds with the fact that autism is largely a hidden disability.

Many autistic people, especially those with Asperger's and high-functioning autism, make remarkable progress through childhood and beyond. They learn to function in social settings; they develop coping strategies that allow them to overcome their anxiety; they teach themselves, often through highly intricate methods, to recognise body language and the non-verbal signals that neurotypical people respond to instinctively. Good therapy can help this process and has got better as our understanding of autism has improved. But interpreting this progress as 'recovery' strikes me as misplaced and potentially self-defeating.

As Professor John Matson at Louisiana State University argues: 'When you're autistic, you're autistic. It's a very stable condition.' Many people with autism have the ability to learn social interaction, if perhaps in a more mechanical way than their neurotypical peers. If they make it, it doesn't mean that they've recovered, in the same way that deaf people don't lose their deafness by learning to lip-read fluently. It simply means that they've learned to cope. The danger comes when a situation arises in their life that they haven't taught themselves to cope with. Perhaps they have to respond to a sudden trauma or a relationship breakdown. If they are deemed to have 'recovered' from autism, how will they gain access to the support they need? It's hard enough, as a parent, to have to go back to square one every time your child starts with a new therapist or moves another rung up the educational ladder; how much harder must it be to have to go through all that as a self-reliant adult in your thirties or forties? Misleading notions of 'recovery' not only offer false hope, they also risk undermining the painstaking progress made by adults with autism over decades.


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Tetra Computer World: Recovery: a conflicted position
Recovery: a conflicted position
Tetra Computer World
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