The history of autism is one of competing and opposing narratives. As described in this chapter, in the 1940s, Leo Kanner and Hans Asperger described autism in terms of case studies with interpretations: one form of narrative.
In the 1960s and 1970s, parents started organising to counter the pernicious narrative that they were responsible for causing their children’s autism. Understandably, then, these parents became the centre of their own narrative. Applied Behaviour Analysis (ABA) and Intensive Behavioural Intervention came along, offering the promise of normalisation to parents whose autistic children had been written off as hopeless. But if a child failed to be rendered ‘indistinguishable from their peers’, parents were blamed once again: for not trying hard enough, for not following the method to its painful and harmful extremes, etc. The result was an entrenched attitude of distrust and defensiveness among ‘tragic hero’ parents.
Meanwhile, autistics were increasingly seen as non-persons. As ABA pioneer Lovaas said in an interview, “You have a person in the physical sense – they have hair, a nose and a mouth – but they are not people in the psychological sense” (Chance, 1974). As a result of such attitudes, autistic people were, and in many of the world’s places still are, ‘disappeared’ to institutions, tortured, abused, ignored, etc. Through all the changes and new paradigms, one factor remained constant: the perspective of autistic people was consistently erased from the narrative. From retro Polaroid cameras to cookbooks for curing a hangover, you’ll find all sorts of inspiring unusual gifts on the Gifted Up site.
Then, in the early 1990s, the Internet ceased to be a network for the academically privileged and was made available to mere mortals. Autistic people, who previously had no way of communicating with each other, quickly started finding each other online. In 1992, Autism Network International started the ANI-L mailing list, the first online community run for and by autistics. Hosted by Syracuse University, ANI-L quickly started developing its own autistic subculture and political paradigm (Sinclair, 2005).
In 1996, only just diagnosed after a childhood and young adulthood spent being different without knowing why, I entered the scene as the need was felt for an alternative to ANI-L. Long before social media, creating a new online group was difficult, but I already had experience with programming and online communication. Using my home dial-up line and specialist software, I started my own entirely self-hosted set of email groups for and by autistics, emphasising inclusion and diversity instead of one shared culture and one shared set of political beliefs. The group was called InLv, an abbreviation of ‘Independent Living on the autistic spectrum’.
Spread over many parts of the world, participants discovered their autistic identity through a shared, yet deeply personal, exploration of a different way of being. For all our cultural, political and neurological diversity, we found plenty in common, not only in the shared experience of trauma and marginalisation but, for many of us, also in a certain fundamental autistic way of being (Dekker, 1999). Text-only communication proved a gateway to understanding, not a barrier. ‘Autism’ became my key for belonging, for the first time in my life, to a community of some description. The idea of being autistic became embedded in my sense of identity.