Coverage of Maine's Bill to Remove Religious Vaccine Exemption
About Last Summer: Maine Governor Janet Mills Supported Medical, Religious and Philosophical Vaccine Exemptions

Interviewing silence: In conversation with the Autism Community

ParticipationsInterviewing silence: In conversation with the Autism Community
Participations Journal of Audience and Reception Studies

Download Interviewing Silence-1
Jonathan Rose,
Drew University, New Jersey, USA

Abstract:

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.

Read the full paper Download Interviewing Silence-1

Comments

Aimee Doyle

@Grace - regarding sign language.

In my experience as an autism parent for 25+ years, and as a disability attorney who has advocated for speech services on IEPs (Individualized Education Plans, mandated by the United States' Individuals with Disabilities Education Act), it's been extremely saddening for me to realize that even the best augmented and adaptive communication methods rarely enable autistic individuals to do more than express the most basic needs. Similarly, I've seen sign language taught - both as an adjunct and a substitute for spoken language, but I've never seen it fully successful. My own son was taught sign when he was four and five, as part of his speech therapy. It never seemed to work as a method of communication for him. Sometimes I wonder if it's the language center of the brain itself that is broken, not just the way in which we demonstrate language (e.g. signing, typing on a computer)

I'm sure there are a few exceptions - nonverbal individuals who learn to type or sign or text - but I've never met one and I suspect that ability is rare. Clearly, we need better methods to establish communication with autistic adults and children who are nonverbal. Would be really curious to see some statistics on what percentage of nonverbal children and adults learn to communicate effectively (e.g. hold a conversation, write paragraphs, etc.) by one of these means. Would like to see more research into those who can do this, to figure out how they do this.

Grace Green

There have been several programmes on the BBC in the last few days about more mistreatment of learning disabled, and autistic, people in institutions in the UK, with discussion about the patients' "behaviour". While I was listening I remembered reading the book about Helen Keller (who was deaf-blind). Her behaviour was wild and uncontrollable until her parents found her a tutor who taught her to communicate with sign language. As soon as she grasped the significance of this skill she calmed down, and ended up getting a degree. It made me wonder if that might be one way forward for autistic people - I know many here have worked hard with their kids in this way, with varying degrees of success.

R's dad

This is excellent and valuable work, Dr Rose; thanks!

I wonder how familiar you are with the rising tide of non-speaking autistics now able to communicate through text (using the RPM technique). Many of them are blogging - quite eloquently, I might add - and are able to provide insights into their condition that elude even the most astute and observant parents.

Angus Files

Thanks Jonathan great article explaining some of the diffrent levels of autism .I noticed this "learning aid" using Humpty Dumpty,and he never fell he was pushed?Exactly thats what I thought..My observation when teaching Autistic``s is and what the Goverment`s know is that if they try to teach a method or change the way of thought of an autistic`s if it goes all wrong how do they put it right-they cant.Yet time and time again we see the same feel good ideas being rolled out to no good effect on or for any autistic so far as I have seen.

So if there are any autistic`s reading this that love Humpty Dumpty(as I do) turn away now..

https://teachingautism.co.uk/who-pushed-humpty-dumpty-crime-scene/

Pharma For Prison

MMR RIP

nhokkanen

As for Gardiner Harris: He no longer works for The New York Times.

Here’s a gratifying January read by a former Age of Autism contributor:
“Jake Crosby Brings The Curtains Down on Gardiner Harris’ NYT Career.”

Apparently Harris’s ham-fisted interrogatory techniques have also offended former UN Ambassador John Bolton.
https://www.autisminvestigated.com/jake-crosby-gardiner-harris/

nhokkanen

Thank you, Professor Rose, for working to provide a voice for the voiceless - and describing the challenges in doing so.

It’s likely Rose’s initial overtures to interviewees were met with degrees of mistrust and suspicion due to previous betrayals by media reporters. Autism parents learned the hard way to record themselves being interviewed, to compare what actually was said with what the reporter chose to publish.

Verify your Comment

Previewing your Comment

This is only a preview. Your comment has not yet been posted.

Working...
Your comment could not be posted. Error type:
Your comment has been saved. Comments are moderated and will not appear until approved by the author. Post another comment

The letters and numbers you entered did not match the image. Please try again.

As a final step before posting your comment, enter the letters and numbers you see in the image below. This prevents automated programs from posting comments.

Having trouble reading this image? View an alternate.

Working...

Post a comment

Comments are moderated, and will not appear until the author has approved them.

Your Information

(Name and email address are required. Email address will not be displayed with the comment.)