Monday, 13 February 2012

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 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.


Ellen Arnison said...

Interesting stuff. I have never heard of recovery from autism (except from my spectacularly misinformed ex mother-in-law). It's true many autistic people can end up at the same place - in work, relationship, etc - as NT people, but they more than likely have taken a very different route to get there.

Tilly said...

Recently an acquaintance gave me all of her autism related books. When I asked her why she was getting rid of them she said her son didn't have autism anymore. I was a bit perplexed by this as I'm told that it's a lifelong condition. When I mentioned this 'recovery' to another parent of an ASD child he was really annoyed at the suggestion that someone can 'recover'. I don't know whether the child who 'recovered' had managed to learn enough ways to cope so that he appeared to have 'recovered' or whether his mother was in denial about his ASD. Perhaps a bit of both? Whatever your view on ASD 'recovery' it gives us hope that our child will eventually be able to function relatively independently in the big wide world!

Ariane Zurcher said...

I am so pleased you wrote this. There are many books on autism by well meaning parents reporting some form of biomedical or behavioral intervention resulting in the "recovery" of their child. There is an almost fundamentalist tone to these stories as they assure us of their validity. What is most disturbing is the implication that if we, as the parents of a child with autism, do not try every known intervention out there, we are somehow giving up on our child. We are not being as "good" a parent as those few who found something that "recovered" their child. We enter Bruno Bettelheim territory with the implication that if we were just more on top of things our child, too, could be recovered. Being the mother of a daughter with autism - - who has tried just about every known "treatment" and intervention - both biomedical as well as behavioral, my daughter remains very much on the spectrum. She is "moderately" autistic (whatever that may mean) and is most definitely NOT recovered. I have yet to meet any of those "recovered" children, I have read about them, I have heard about them, but I have never met one nor do I know anyone who has. Our culture adores and I believe, even demands this kind of Hollywood story - the parent who despite all odds, overcomes autism. I used to believe this was a uniquely American phenomena.

Pauline said...

My older son has coped very well with his Asperger's and is now enjoying his second year at university. He has not "recovered" but has learned coping strategies for social situations. It has not come easy and he still asks about how to deal with different situations. He knows and accepts that he will always have Asperger's, but says that it is a part of who he is and he doesn't want to change anything about himself. People with autism can and do progress but it is a condition that will never completely disappear. I'm sorry if there are parents out there who cling to the hope that their child will grow out of it - they won't. However parents and others involved in their care can help them to cope and to progress. My older boy has grown beyond my wildest hopes, but he still hass Asperger's. If I am honest I would rather he did not have to deal with the difficulties he has had. However Asperger's syndrome is part of who my son is, and I would not change him for the world.