How an autism diagnosis became both a clinical label and an identity; a stigma to be challenged and a status to be embraced.
In 1991, Donna Williams, a little-known Australian writer, released her memoir Nobody Nowhere: The Remarkable Autobiography of an Autistic Girl. The book sold astonishingly well and became an international hit, spending 15 weeks on The New York Times bestseller list.
Williams recalled her frustration that ‘people were forever saying that I had no friends’, when this didn’t bother her at all. When she retreated from the outside world, she said, it was not because she didn’t understand words (a common misconception), but because she simply couldn’t relate to them, which forced her to ‘shut down’ her senses and ‘meaning systems’. High-pitched sounds, touch and light became simply ‘intolerable’, she explained.
In the early 1990s, narratives told from the perspective of autistic people were virtually unheard of. At the time, most scientists depicted autism as an illness or ‘mental disorder’, and the focus was on identifying and ultimately eradicating it. Lorna Wing, a British psychiatrist, had developed the clinical classification back in the 1960s that stuck. She claimed that autistic people were ‘impaired’ in three areas: in social interaction, communication and imagination.
Various methods were used to identify these ‘impairments’, from puzzles and games to family testimony. Psychologists and neuroscientists went on to try to develop quick-fix behavioural interventions, as well as to search for ‘autistic genes’. However, after much hype, the idea that the autism diagnosis resided in a unique genetic code quickly faded from view.
Meanwhile, increasing numbers of children around the world were found to fit the prototype, and diagnosed accordingly. Yet Wing’s ‘impairment’ model of autism carved up human psychology in a way that was oddly definitive and unambiguous. It captured and contained an important aspect of human identity, but in a very artificial fashion. In retrospect, perhaps the definition was always just too perfect to go without dissent?
While adults such as Williams began to challenge the false clarity of the scientific account, the global ‘neurodiversity’ movement took shape online, where internet activists on new forums attacked the notion that autism was an ‘illness’ or ‘impairment’. Jim Sinclair, the American co-founder of the advocacy group Autism Network International, argued that most of the population were just ‘neurotypical’, and that wider society should not ‘treat’ autistic people as sick or abnormal.
Judy Singer, an Australian sociologist and autism advocate, said that those with neurological difference should claim the label ‘neurodiverse’, and form a new political group equivalent to those aligned by class, race or gender. These activists said that there were positive aspects to the identity, and that having autistic members was good for wider society. Approaches to autism, they argued, should not be about ‘eliminating’ it, but rather about making society as a whole more inclusive.
These debates point to an apparent paradox in our understanding of autism: is it a disorder to be diagnosed, or an experience to be celebrated? How can autism be something that must be ‘treated’ at one level, but also praised and socially accommodated at another? Many people in the neurodiversity community say that autism is just a natural variant in the human condition. But should autistic individuals have the same legal rights as everyone else?
Or are their needs different, and if so, how? If we are invited to be skeptical of clinical approaches, how can we decide who qualifies for additional support? The fundamental conundrum is that, over its troubled history, views have shifted about whether autism is part of a narrative description of an individual’s developing life, or whether it’s a measurable category that others have the right to count, demarcate and define.