Interviewing silence: In conversation with the Autism Community
Participations Journal of Audience and Reception Studies
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Drew University, New Jersey, USA
Collecting an oral history of autism presents extraordinary challenges. A third of all autistic individuals are nonspeaking, many others are seriously speech impaired, and their parents are often so overwhelmed by the burdens of caring for disabled children that they have little time to reflect about their experiences. Moreover, the mainstream media likes ‘happy news’ about autism (e.g., fundraisers, job training programs) and prefers not to dwell on the dark side (neurological damage, unemployment, violent outbursts, suicide). Here I explain the methodology behind my article ‘The Autism Literary Underground’, published in the journal Reception. I conducted interviews by email, in part because scheduled audio-recorded interviews are likely to be interrupted by the daily crises that autism families face, such as meltdowns and elopements. I specifically interviewed a small cohort of autism parents about their reading and how it shaped their attitudes toward the disorder, and I compared their responses with the results of larger scale studies. What emerged was a self-portrait of the autism community that is very different from what the mass media presents.
Keywords: Email interviews; autism; reading; controversy
The blind and the deaf have always been with us, and over the centuries we have learned how to communicate with them. But autism is a relatively new (and increasingly common) disability, and we don’t yet understand it or know how to deal with it. The symptoms vary enormously from individual to individual. Severity can range from barely noticeable to totally debilitating. The condition often impairs the ability to read but can also result in ‘hyperlexia’, a syndrome which involves precocious reading at a very early age but also difficulties in reading comprehension.
In short, the autism epidemic confronts us with many more questions than answers. We might find those answers by interviewing members of the autism community, defined as including both autistic individuals and their family members, but there we run up against anumber of special obstacles. That is what I encountered when I conducted research for an article that was eventually published as ‘The Autism Literary Underground’,1 and here I want to explain how we might work around these barriers.
For starters, about a third of autistic individuals are nonspeaking, and many others suffer lesser but still serious forms of verbal impairment. But at least some nonspeakers can communicate via a keyboard, and can therefore be reached via email interviews, which have a number of other advantages: they save the trouble and expense of travel and transcription, they avoid transcription errors and indistinct recordings, and they allow the interviewer to go back and ask follow-up and clarification questions at any time. This is not to rule out oral interviews, which are indispensable for the nonliterate. But email interviews are generally easier for autism parents, who are preoccupied with the demands of raising disabled children, many of whom will never be able to live independently. These parents simply cannot schedule a large block of time for a leisurely conversation. When I conducted my interviews, the interviewees often had to interrupt the dialogue to attend to their children. Perhaps the most frequent response to my questions was, ‘I’ll get back to you….’ (One potential interviewee was never able to get back to me, and had to be dropped from the project.) Ultimately these interviews addressed all the questions I wanted to address and allowed interviewees to say everything they had to say, but in email threads stretching over several days or weeks.
Recent decades have seen a movement to enable the disabled to ‘write their own history’. In 1995 Karen Hirsch published an article advocating as much in Oral History Review, in which she discussed many admirable initiatives focusing on a wide range of specific disabilities – but she never mentioned autism.2 Granted, autism was considerably less prevalent then than it is today, but the omission may reflect the fact that autism presents special problems to the researcher. In 2004 the Carlisle People First Research Team, a self-governing group for those with ‘learning difficulties’, won a grant to explore ‘advocacy and autism’, but soon concluded that their model for self-advocacy did not work well for autistic individuals. Though the Research Team members were themselves disabled, they admitted that they knew little about autism, and ‘there was an obvious lack of members labelled with autism or Asperger’s syndrome’ in disability self-advocacy groups throughout the United Kingdom. The Research Team concluded that, because autism impairs executive functioning as well as the ability to socialize and communicate, it was exceptionally difficult for autistic individuals to organize their own collective research projects, and difficult even for non-autistic researchers to set up individual interviews with autistic subjects.3
Self-advocacy groups do exist in the autism community, but they inevitably represent a small proportion at the highest-performing end of the autism spectrum: they cannot speak for those who cannot speak. We can only communicate with the noncommunicative by interviewing their families, who know and understand them best.
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