Autism and representation – why inclusion is so important

When I was a teenager a movie came out called Rain Man. This movie was supposed to be a depiction of autism. Strangely enough the person the autistic character was based on was actually not autistic. This film was one of a tiny number of things at the time claiming to be a representation of autism. For years – and even now sometimes – Rain Man is brought up as an example of autism. There were almost no other representations of autism at this time and it stuck in the popular consciousness.

Over the years more representations of autism in popular media emerged. Initially almost all of these representations were created -and played – by allistic people and most of them were one dimensional and based in stereotypes and assumptions. Autistic characters were usually male, cis gender, asexual and white. They often had savant skills and lacked empathy. They were often presented as eternal children. Autism was presented as a sort of alien existence – people who were unreachable and sort of less than human. It is understandable that the puzzle piece was used to represent autism based on these assumptions and stereotypes – we were seen as puzzles and we still are. There were almost no autistic voices and representation was done on behalf of us rather than with us. Sadly this focus still persists in some representations of autism even now. I struggle to even start watching some movies and TV shows about autism as I am (often rightfully) afraid that the autistic characters will be stereotyped. I actually find it quite anxiety-provoking to watch programs with autistic characters for this reason and often avoid looking at them or I ask a friend to watch them with me.

There is one type of representation which is almost always positive and that is the representation by autistic people themselves. In 1992 my late mentor Polly Samuel published Nobody Nowhere – an autobiographical account of her life as an undiagnosed autistic woman. This book was an instant bestseller and was purchased by millions of people. Polly’s book was one of the first accounts of autistic experience told by an autistic person and it was hugely important in terms of autistic representation. As time went on more autistics wrote about their experience – including Wenn Lawson, Liane Holliday-Willey and even me. This representation was authentic and genuine. Autism advocacy by autistics for autistics started to emerge as a ‘thing’ at around this time too with autistic-run events like Autscape and advocates speaking out about autistic experience and the Autism Self Advocacy Network lobbying for change. The concept of Neurodiversity, a term coined by advocate Judy Singer, started to take off. An excellent account of the Neurodiversity movement is Steve Silberman’s book Neurotribes.

In recent years there has been a bit of a dichotomy going on with some representation of autistics being in the stereotype mould and some representation being based in neurodiversity and self-advocacy principles. A couple of years ago I was featured on ABC news program The Drum as part of a segment on autistic author Kay Kerr’s book ‘Please don’t hug me’. I was brought in an expert on autism. I was very excited to be involved as often an allistic expert would have been brought in to offer their thoughts. I have since been featured as a n ‘expert’ in a range of areas and frequently do consultancy work with universities and other organisations. 

One thing about the shift towards more autistic representation is that we can’t be complacent about it. Gains are not set in stone. Advocacy and activism are not linear and gains can just as easily be rolled back as improve. As such representation is incredibly important. We need to call out where stereotypes and unhelpful representation is happening and we need to offer a more positive and inclusive view wherever we can. Representation is also important for younger autistic people. If they see fellow autistics in positions or influence, see autistic actors playing autistic characters and see positive representations of autism then this will make it a lot easier for them to be proud of who they are.

I thought I’d finish with my recommendations for some works of fiction featuring autistic characters so here goes…

Film: Extremely Loud & Incredibly Close

Film Please Stand By

Film: I am Khan 

Novels: The Rosie Project, The Rosie Effect, The Rosie Result, Graeme Simsion

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