Historian - difficulties researching the “autism epidemic”

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ASPartOfMe
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10 Jun 2019, 2:37 am

The Challenges of Writing Histories of Autism
Jonathan Rose is William R. Kenan Professor of History at Drew University.

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Autism is a relatively new (and increasingly common) disability, and we don’t yet fully understand 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.

We have just begun to write the history of autism. Frankly, some of the first attempts stumbled badly, especially over the question of whether “It was there before” – that is, before the twentieth century. That mantra was repeated several times by John Donvan and Caren Zucker in In a Different Key:The Story of Autism (2016). But they and others have found precious few halfway plausible cases in history, nothing remotely like the one in 40 children afflicted with autism reported by the 2016 National Survey of Children's Health. Donvan and Zucker claimed that the “Wild Boy of Aveyron”, the feral child discovered in France in 1800, “had almost certainly been a person with autism.” But autism impairs the ability to perceive danger, and frequently results in early deaths from drowning and other accidents, so it’s not likely that an autistic child could survive long in the wild. And there are barely a dozen examples of feral children in history, so even if they were all autistic, the condition was vanishingly rare.

In Neurotribes (2015) Steve Silberman also argued that autism had been a common part of the human condition throughout history. His book celebrated Dr. Hans Asperger as a friend and protector of autistic children, even placing his benevolent image on the frontispiece. Critics hailed that version of history as “definitive”. But recently Edith Sheffer, in Asperger’s Children: The Origins of Autism in Nazi Vienna (2018), confirmed that Asperger had been deeply implicated in the Nazi program to exterminate the neurologically handicapped.

Surely if we want to write a full and honest account of the recent history of the autism epidemic, we should interview members of the autism community, defined as including both autistic individuals and their family members. This, however, presents a number of special obstacles that I encountered when I conducted research for an article that was eventually published as “The Autism Literary Underground." Here I want to explain how we as historians might work around these barriers.

For starters, about a third of autistic individuals are nonspeaking, and many others experience 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. Email interviews 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. 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 nonautistic researchers to set up individual interviews with autistic subjects.

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.

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.

One also has to be mindful that the autism community is riven by ideological divisions, and the unwary researcher may be caught in the crossfire. For instance, if you invite an autistic individual to tell their own story, they might say something like this:

As a child, I went to special education schools for eight years and I do a self-stimulatory behavior during the day which prevents me from getting much done. I’ve never had a girlfriend. I have bad motor coordination problems which greatly impair my ability to handwrite and do other tasks. I also have social skills problems, and I sometimes say and do inappropriate things that cause offense. I was fired from more than 20 jobs for making excessive mistakes and for behavioural problems before I retired at the age of 51.

Others with autism spectrum disorder have it worse than I do. People on the more severe end sometimes can’t speak. They soil themselves, wreak havoc and break things. I have known them to chew up furniture and self-mutilate. They need lifelong care.

This is an actual self-portrait by Jonathan Mitchell, who is autistic. So you might conclude that this is an excellent example of the disabled writing their own history, unflinchingly honest and compassionate toward the still less fortunate, something that everyone in the autism community would applaud

Mitchell raises a still more unsettling question: Who is autistic? The blind, the deaf, and the wheelchair-bound are relatively easy to identify, but autism is defined by a complex constellation of symptoms across a wide spectrum – and where does a spectrum begin and end? You could argue that those with a formal medical diagnosis would qualify, but what about those who are misdiagnosed, or mistakenly self-diagnosed? What if their symptoms are real but extremely mild: would an oral historian researching deafness interview individuals with a 10 percent hearing loss.

Precisely because neurodiversity advocates tend to be highly articulate, they increasingly dominate the public conversation about autism, to the exclusion of other voices. Mitchell points to the Interagency Autism Coordinating Committee, an official panel that advises the US government on the direction of autism research: seven autistic individuals have served on this body, all of whom promote neurodiversity, and none favor finding a cure.

Yet another ideological landmine involves the causes of autism, for many in the autism community believe it is a disorder that results from adverse reaction to vaccination. In my own research, this was the group I chose to focus on. The mainstream media generally treat them as pariahs and dangerous subversives, denounce them repetitively, and almost never allow them to present their views. But that kind of marginalization inevitably raise troubling questions: Are these people being misrepresented? What is their version of events? And since they obviously aren’t getting their ideas from the newspapers or television networks, what exactly are they reading, and how did that reading shape their understanding of what has been inflicted on them.

So I started with a simple question: What do you read? Unsurprisingly, many of my subjects had read the bestselling book Louder Than Words (2007) by actress Jenny McCarthy, where she describes her son’s descent into autism and argues that vaccination was the cause. Doctors have expressed horror that any parent would follow medical advice offered by a Playboy centerfold, but a historian of reading might wonder whether the reader response here is more complicated. Are readers “converted” by books, or do they choose authors that they already sympathize with? My interviewees reported that, well before they read Louder Than Words, they had seen their children regress into autism immediately following vaccination.

I oftenvdescribe autism as an “epidemic”. This is yet another flashpoint of controversy. Public health officials generally avoid the word, and many journalists and neurodiversity activists fiercely argue that autism has always been with us. As a historian who has investigated the question, I have concluded (beyond a reasonable doubt) that autism scarcely existed before the twentieth century, and that it is now an ever-spreading pandemic. The essential point here is that any interviewer who refers to autism as an “epidemic” may alienate some of his or her interviewees.

So how do we handle this situation – or, for that matter, any other divisive issue? All oral historians have opinions: we can’t pretend that we don’t. But we can follow the ethic of an objective reporter. A journalist is (or used to be) obligated to report all sides of an issue with fairness, accuracy, and balance. He or she may personally believe that one side is obviously correct and the other is talking nonsense, but in his or her professional capacity he or she keeps those opinions to herself and assures his or her interviewees that they are free to express themselves. One has to accept that not everyone will be reassured. I found myself variously accused of being (on the one hand) an agent of the pharmaceutical companies or (on the other) an antivaccinationist. (I am neither.) But most of my subjects were quite forthcoming, once I made clear that the article I was writing would neither endorse nor condemn their views.

Of course, if any of the voices of autism are stifled, then the true and full story of the epidemic will be lost. Some honest and well-researched histories of autism have been produced, notably Chloe Silverman’s Understanding Autism and Edith Sheffer’s Asperger’s Children. Although Silverman only employs a few interviews, her work is distinguished by a willingness to listen closely to autism parents. And in her chilling account of the Nazi program to eliminate the mentally handicapped, Sheffer uncovered the voices of some of its autistic victims in psychiatric records. What both these books suggest is that we could learn much more about autism as it was experienced by ordinary people simply by talking to them. Many of them protest that the media only reports “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), and these individuals are usually eager to tell their stories.

Rather than rely solely on “the newspaper of record” (or any other newspaper), historians can find correctives and alternative narratives in oral interviews. Oral history has made an enormous contribution to reconstructing the history of the AIDS epidemic and the opioid epidemic, and it will be no less essential to understanding the autism epidemic.

Yet again the old trope that unlike autism parents “high functioning” autistics can not speak for “low functioning” autistics is stated as fact. Yet again the fact that many ND advocates are anything but almost typical and some of those that were severe as children and that however almost typical a person is they have much more experience at being autistic then NT parents is ignored. He might have realized this if he followed his own advice and talked or listened ND advocates. The books he recommends are parent centric and the book he recommends to prove autism is a pandemic was written by an anti vaxxer. The only actually autistic person quoted and quoted extensively in the article is the fierce opponent opponent of the ND movement Jonathan Mitchell.

Professor Rose is correct in saying writing a history of autism is very difficult and correct in identifying what those difficulties are. IMHO it is way too difficult for him.


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Last edited by ASPartOfMe on 10 Jun 2019, 3:47 am, edited 1 time in total.

TimS1980
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10 Jun 2019, 3:39 am

YUCK

"We've been here all along" is in my reading queue. This person needs it more.



Mona Pereth
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10 Jun 2019, 2:25 pm

I just now posted a bunch of links refuting the "epidemic" idea in the separate thread Evidence against ASD "epidemic": the great reclassification.


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CockneyRebel
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12 Jun 2019, 4:23 pm

That's because there's never been an epidemic to begin with.


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13 Jun 2019, 11:47 pm

CockneyRebel wrote:
That's because there's never been an epidemic to begin with.


^Precisely! The rise in diagnoses is due to increased understanding.


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17 Jun 2019, 7:57 am

Increased understanding is always a good thing.


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