This article is a companion piece to The New Idealist Issue Six: The Autism Issue which you can download here.
Please note: This article was originally published in The New Idealist section of The Intelligent Review site in August 2014 before being transferred to this new site in July 2015.
It would not be possible in this short article to give an overview of the myriad of ways in which autism has been conceptualised since it first entered into the clinical lexicon. Instead, a reflection regarding some of the most significant schisms in how autism has come to be defined and conceptualised will be given.
“Extremes of any combination come to be seen as ‘psychiatric deviance’. In the argument presented here, where disorder begins is entirely down to social convention, and where one decides to draw the line across the spectrum.” (Milton, 1999 – spectrum referring to the ‘human spectrum of dispositional diversity’).
In 2005 my son was diagnosed as autistic with severe learning difficulties. As I began to research what was said about this label, I found myself rejecting most of what was said as not being applicable. It was not until I read the work of others within what could be called the ‘neurodiversity movement’ (notably Jim Sinclair, Claire Sainsbury, Amanda Baggs, Dinah Murray, and Larry Arnold), that I realised that this was what I had always been trying to conceptualise when I was a student many years prior. I was diagnosed myself in 2009 at the age of thirty-six.
Originally, autism was perceived as being a very rare ‘disorder’, yet since then, there have been many changes to diagnostic criteria and practices over a number of decades, the number of people being diagnosed as on the autism spectrum has increased exponentially. This has led to many conspiracy theories linking autism to some kind of environmental ‘insult’ and campaigns to combat the ‘epidemic’ of autism. However, such a shift in numbers can only be logically answered by there being a change in how such terms are being applied. In this sense, ‘autism’ is a word, a social construct attempting to define something that keeps eluding the research techniques and imaginations of those who try to study and define ‘it’. Of course, this has not stopped people from trying to interpret the ‘enigma of autism’.
Due to the causes of ‘autism’ being unknown, it has come to be defined by a cluster of behaviours, or in other words, how it appears to non-autistic outsiders.
Due to the causes of ‘autism’ being unknown, it has come to be defined by a cluster of behaviours, or in other words, how it appears to non-autistic outsiders. Theories as to what is causing the said behaviours have also come from such an external view. The majority of these theories originate in psychology or psychiatry and locate any difficulties associated with being autistic solely in the brain/mind. One such theory being that of a ‘theory of mind’ deficit, which suggests autistic people lack the ability to intuitively understand the intentions and motivations of others.
In my own theorising however (Milton, 2012, 2014), a double empathy problem exists (in no way to be confused with the ‘double zero degrees of empathy’ concept of Baron-Cohen). That is, a problem for both parties, between people of differing dispositions and ways of being in the world. Mutual incomprehension is easily achieved when phenomena have differing perceptual salience to those doing the perceiving. To put it simply, one would not need conferences and shelving units full of literature regarding this ‘enigma’ if autistic people were so easily empathised with from a non-autistic disposition.
This is just ‘my take’, but for me, neurodiversity is a concept that suggests all brains/minds have a differing embodied existence. Variations in neurological development are thus seen as part of natural diversity, rather than something to be pathologised using a purely medical model of disability, defined by one’s deviation from statistical or idealised norms. This is not to say that those who identify as autistic or other forms of neuro-identity do not find life challenging. Autistic people are significantly disadvantaged in many aspects of life, including by some of the treatments given to us in the ill-conceived attempt to ‘remediate the autism’.
We all ‘share’ in our cultural milieu, but our experiences of it differ. We are not all just biologically diverse, but occupy differing social positions too, and in interpreting the lives of autistic people (except for autistic accounts themselves), these aspects are all too often divorced from each other.
About the Author
Damian Milton. MA, PGCert, BA (Hons), Dip (conv), PGCE, Mifl, MBPsS. Damian is currently studying for a doctorate with the Autism Centre for Educational Research at the University of Birmingham. He is a member of the steering group for this department, a member of the programme board for the Autism Education Trust, and a member of the scientific and advisory committee for Research Autism.
Damian also works for the National Autistic Society as a lead consultant for the ‘Ask Autism’ project. Damian holds a number of academic qualifications in a range of subjects: Sociology, Philosophy, Psychology, Education, and has a number of years of experience as a lecturer in both FE and HE. Damian’s interest in autism began when his son was diagnosed in 2005 as autistic at the age of two. Damian was also diagnosed with Asperger’s in 2009 at the age of thirty-six
Baron-Cohen, S. (2011) Zero Degrees of Empathy: a New Understanding of Cruelty and Kindness. London: Penguin.
Milton, D. (1999) The Rise of Psychopharmacology [Masters Essay – unpublished]. University of London.
Milton, D. (2012) On the ontological status of autism: the double empathy problem. Disability and Society. Vol. 27(6): 883-887.
Milton, D. (2014) Autistic expertise: a critical reflection on the production of knowledge in autism studies. Autism: The International Journal of Research and Practice (special edition ‘Autism and Society’), Onlinefirst, 17/03/14.
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