Yesterday I described the introduction to a full day conference on Autism, Ethics and the Good Life. It was a very full day as the Conference Programme makes clear. So full that I am going to need a series of posts to even attempt to do justice to the richness of the arguments that were presented. So I am going to post individual blogs for each speaker and attempt a summary at the very end. Wish me luck. All these guys are so much wiser and smarter than me. Rather than sitting on the shoulders of giants I am hanging on to their coat tails.
Stuart Murray spoke after the break. He has an autistic son and has brought his own expertise as a professor of English Literature to bear on the question of autism. He spoke about the ways in which texts that purport to tell us about autism may also tell us about the people writing them. In my case I am writing up notes based upon the content of Murray’s talk, but framed by my previous reading of his book, Representing Autism: culture, narrative, fascination. (Liverpool University Press 2008)
Autism Narrative and Representation
Narratives do not just tell stories. We use them to interpret our experience. When we read other people’s narratives we should be aware of the interpretation that they are putting upon experience.
Narratives concerning autism are powerful and diverse.
Autobiographies by people like Temple Grandin and Donna Williams have a narrative that tells of triumph over the negative impact of autism while simultaneously celebrating autism’s positive impact on their ability to lead a good life.
But many narratives are written by people outside the spectrum and their assumptions deny the possibility that autistic people can lead a good life.
The Diagnostic and Statistical Manual of Mental Disorders (DSM) published by the American Psychiatric Association (APA) assumes that autism is a deviation from the norm (i.e. the medical definition of normality) and fits a deficit model. Autistic people are missing or have malfunctioning versions of mental modules that are necessary to function as a normal human being. People using the DSM see what they are asked to look for. DSM criteria for developmental disorders are really ways of defining what a normal good life is in childhood by excluding those who fit the criteria from the good life.
There are other narratives in autism. Some of them are visual. fMRI scans are now de rigeur in most reports on autism research. They are pictures that speak to us in metaphors. Does this coloured section of the brain represent autism? fMRI scans suggest that we host autism in our brains. It is an internal feature. Brains are “hard-wired” for autism in a cultural analogy with computer hard drives.
[And it is a simple matter to take the analogy as something real and imagine that our brains do work like computers, instead of realizing that computers are at best very limited attempts to emulate the working of our brains. Nevertheless the computational theory of mind exerts a powerful influence. See any book by Pinker or Dennett for examples of this particular narrative. ]
Moving away from machines, Murray considered the work of Simon Baron-Cohen. For SB-C reaching a statistical cut off point for autism (e.g. his own autism quotient) is not sufficient for a diagnosis. Does one’s “autism” thus defined and delineated have a negative impact on one’s ability to lead “the good life”? Can autism exist without suffering and disorder? Suffering is not mentioned in any of the diagnostic criteria but it is integral to our understanding.
Are there narratives about autistic people who do not suffer? Can you be happy and autistic? And why should we pathologize autistic suffering? Suffering can be normal; e.g. mourning our loved ones. Is their unhappiness evidence of a disorder that we need to cure while our unhappiness is evidence of our humanity? That is some narrative!
Seeing autism as inherently disabling can seriously skew even scientific narratives. Michelle Dawson has investigated the ways in which autistic abilities are described as side effects of impairments.
“while we know autistics process information atypically, very little thought has gone into how to fairly assess their abilities. In fact there is so little understanding of what autistics do well that their strong abilities are often regarded as dysfunctional. “
Some narratives are dangerous as well as misleading. Discussions of the relationship between criminality and autism ignore the fact that autistic people are more likely to be victims of crime. Rare but well publicized cases of autistics committing crimes reinforce the notion that autism=loner=psychopath. Murray finished with the narrative of Nicky Reilly, an autistic youth who was drawn to Islamic fundamentalism and injured himself (and nobody else) in a failed attempt to become a suicide bomber.
Murray ended by inviting us to draw our own conclusions from this particular narrative. My conclusion was that this kind of narrative invites us to believe that autistic people present a particular danger that precludes them from participating in the good life. Not only do they need protecting from themselves. But we also need protecting from them.
Narratives can be powerful and diverse. And some, like this one, can be dangerously wrong and need to be opposed.