One of the perks of having been an arts journalist in a previous life is that you remain, by accident or design, on the mailing lists of some publishers. This means that an eclectic selection of fiction, memoir, history and miscellaneous other genres arrives in bubble-wrap envelopes on a fairly regular basis.
A debut novel landed on my desk in this fashion four weeks ago. Garlanded with endorsements from writers including Booker Prize winners Roddy Doyle and Paul Beatty, it told the story of residents and staff at an adult day-care centre in southern California.
The book was called Upward Bound and its author, a 28-year-old Californian named Woody Brown, was already destined for the bestseller lists and celebrity book club endorsements. What made the story remarkable was that Brown is severely autistic and almost entirely non-verbal. His novel had been communicated, letter by letter, via a laminated board held by his mother.
I might not have thought much more about it had I not read an interview with Brown by The Guardian journalist Simon Hattenstone. Clearly moved by his subject, Hattenstone described at length the process by which Brown communicated, with his mother Mary holding the board aloft and voicing his tapped-out answers.
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At one point Hattenstone noticed that Brown appeared to be looking away from the board while spelling. He recorded this as a feature of the busy, multi-screened way Brown’s mind works, and moved on. A more sceptical journalist might have paused.
Then, in the middle of April, The Atlantic magazine published a measured but devastating article by Daniel Engber, who has written extensively about contested communication methods in autism care. Engber had watched footage from Brown’s appearance on NBC’s Today show at one-quarter speed, and what he found was troubling.
Brown’s finger, visible in close-up, appeared to be tapping letters that bore no relationship to the fluent sentences his mother was simultaneously voicing aloud. Engber brought in Katharine Beals, a University of Pennsylvania linguist who has studied the method for more than two decades. “This isn’t subtle,” she told him. “You can see that he’s not pointing to the letters.”
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Engber contacted Brown and his publisher Hogarth, an imprint of Penguin Random House. Brown’s response, delivered by email through his mother, framed scepticism about his communication as a failure to presume intelligence in disabled people.
Hogarth declined to say whether it had taken any steps to verify authorship before publication. The creative writing academics who had taught Brown at UCLA and Columbia were more forthcoming, but not necessarily reassuring.
Mona Simpson, who supervised an early draft of Upward Bound, told Engber she had no doubts about Brown’s authorship, but then acknowledged “it could be that they’ve worked together so long that she can intuit some of what he’s intending”.
Rivka Galchen of The New Yorker, who worked with Brown and his mother across four Columbia semesters, said the worry about authorship had crossed her mind initially. “I feel like I have to take it on faith,” she said.
Declining to ask those questions does a greater disservice to people with severe disabilities, potentially diverting attention and resources from evidence-based approaches
The method Brown uses, known as Rapid Prompting Method (RPM), descends directly from an earlier technique called Facilitated Communication (FC) that was broadly discredited in the early 1990s after controlled studies showed, repeatedly and conclusively, that it was the facilitator rather than the disabled person producing the words.
FC collapsed under the weight of that evidence, and of the false abuse allegations it generated. RPM differs in some technical respects, primarily that the facilitator holds the board rather than guiding the hand, but it has never been subjected to the same controlled authorship testing that finished FC.
The American Speech-Language-Hearing Association classifies it as pseudoscience. No independent test of Brown’s ability to communicate without his mother present has ever been conducted or, apparently, requested.
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One way the world has changed since the FC debacle of the ‘90s is that expert consensus commands less automatic deference than it once did. Robert F Kennedy jnr, now US secretary of health and human services, has described doubters of these methods as delusional and has appointed letter-board users and trainers to a federal autism advisory committee.
The scientific institutions that discredited FC are the same ones that figures such as Kennedy have made a political project of undermining.
Beyond the scientific institutions, there is also a broader question about the responsibilities of traditional gatekeepers, and what we should reasonably expect from different parts of the media ecosystem.
It seems unfair to hold blurb-writers or book reviewers to account for failing to investigate a communication method most of them had never heard of. They were asked to judge a novel and they judged it. Long-form feature writers and interviewers are another matter.
So are academics and major international publishers. Somewhere in that chain, somebody should have asked the hard question.
Asking the necessary questions in cases like this is genuinely difficult and uncomfortable. It can look like prejudice. It can look like punching down at vulnerable people.
But declining to ask those questions does a greater disservice to people with severe disabilities, potentially diverting attention and resources from evidence-based approaches that can actually give them fuller, more independent lives.
Arts and books coverage may be regarded as the “softer” end of journalism, but that should not mean that scepticism is an optional extra.
