I have been privileged enough to work with young people with autism for most of my teaching career. Whenever people ask what I do, I always know what the response will be:
‘Oh, autism, isn’t that where they can’t talk?’
‘It must be hard, working with people who don’t have emotions.’
‘Don’t they get really obsessed with stuff?’
‘You mean like Rainman?’
It seems the main thing people know about autism is that it is not ‘normal’. Autistic people are either seen as deficient and problematic, or endowed with superhuman abilities that have little practical use.
While trying to get people to see beyond the stereotypes can be frustrating for me as a teacher, I cannot imagine what it must be like to be a parent, sibling or autistic person faced with such immediate judgement and pigeon-holing. With a prevalence rate of approximately 1 in 100, it is likely that most people will have some direct experience of autism. So how have these stereotypes, which are often so far from the truth, been perpetuated?
One possible answer is that we look to the media to help us understand autism. We see quirky geniuses (Sheldon in Big Bang Theory and Saga in The Bridge) or individuals who cause significant problems for their families (Raymond in Rainman or Charlie in Black Balloon). We are beginning to see more diverse depictions of autism on our screens (The Autistic Gardener, Julia in Sesame Street and the yet to be broadcast The A Word) which will hopefully go some way towards shifting perceptions. However, I believe our ableist view, which sees autism as a problem and something to be fixed, comes from somewhere far deeper.
The history of autism is a dark one that has included eugenics, ‘cure’ by electric shock and the blaming of mothers who do not love their children enough. That these things have happened in our recent history may begin to explain our negative view of autism. It is my view, however, that it is the very language that is used to describe autism that has the greatest impact. Through the language they use, scientists, academics and researchers have constructed autism as a deficit. It is something that is other from ‘normal’, something to be fixed, changed and possibly even feared.
Take the language used in the diagnostic criteria currently used in the UK (ICD-10) The words used include ‘abnormal’, ‘impaired’, ‘failure’, ‘lack’, ‘deviant’, ‘weak’, ‘delayed’ and ‘restricted’. It could be argued that, as these criteria were written nearly 25 years ago that things have moved on, and we no longer think of autism in this way. However, the diagnostic criteria used in America (DSM-V) were written only three years ago, and contain a familiar list of words: ‘abnormal’, ‘deficit’, ‘impairment’, ‘failure’, ‘reduced’, ‘lack’, ‘absence’ and ‘restricted’. These criteria, which tell us what autism is, and what people diagnosed with autism are, focus almost entirely on a comparison with ‘normal’. Instead of describing strengths, outlining different perspectives and focusing on areas that are problematic for autistic people, these criteria outline the things that we ‘neurotypicals’ find problematic.
It is little wonder then, that when I tell people I work with young people with autism, they immediately think of the deficits. It is these deficits that are still used to define, diagnose and describe autism in academic and scientific literature. When a teacher has a child with autism in their class, the diagnostic report will be full of examples of what the pupil cannot do, and the skills the pupil lacks.
The reason this matters so much becomes apparent on reading any newspaper, on almost any date in the last few years. There seem to be constant stories of autistic people being seen only for their ‘deficits’, and being judged as a problem to society. There was the boy locked in a cage at school when he became too difficult, the young man left on a locked ward for 6 months and the boy denied residency of New Zealand because he would be too expensive for the state to support. These are just a few of the dozens of stories of autistic people being denied their rights, and in many cases suffering mental and physical harm. It is the view of autism as a deficit, something less than ‘normal’ that allows this to happen.
So what is the way forward? Some autistic advocates have suggested alternative diagnostic criteria, that look at differences rather than deficits (my favourite example can be found here) Similarly, some academics are starting to look more closely at how autism is assessed. One example looks at how a strength-based assessment can support teachers to see the potential in their autistic pupils, rather than focusing on the problems.
Those of us who work, or live, with autistic people have always known that it is a different (and some would say, better!) way of understanding the world. Until we start to change the language used and the focus on deficits in criteria, however, the rest of the world will go on expecting limiting stereotypes such as Rainman.
 Throughout this blog, I will be using ‘people with autism’ and ‘autistic people’, reflecting both the ‘people first’ movement and autistic advocates who believe that autism is part of them, meaning that the description ‘autistic’ is most appropriate. For more information about this debate, see this 2015 study
 For a comprehensive account of the history of autism, see Neurotribes by Steve Silberman