Debate unfurls over inclusivity and authenticity in research involving minimally verbal autistic people | Spectrum | Autism Research News

It was supposed to be an opportunity to bring the field together.

In January, the National Institute on Deafness and Other Communication Disorders, part of of the U.S. National Institutes of Health, held an online symposium on minimally verbal and nonspeaking autistic people. It drew in nearly 50 researchers and other stakeholders, with the goal of identifying “research directions for interventions to promote language and communication,” as the organizers put it.

Those organizers, including Helen Tager-Flusberg, director of the Center for Autism Research Excellence at Boston University, and Connie Kasari, distinguished professor of human development and psychology at the University of California, Los Angeles, believed the development of interventions for minimally verbal autistic people had been held back by a lack of creativity and, perhaps, an overabundance of caution, as the two explained in a joint interview with Spectrum. They felt frustrated by picture-based communication systems such as Proloquo, which enable minimally verbal people to express only the most basic wants and needs. They envisioned the meeting as an opportunity to discuss other approaches, including typing-based systems such as letter boards and tablets.

“There are a lot of stories of people who came to typing in their adolescence because nobody recognized that they had these skills at an earlier point in time,” Tager-Flusberg says. “We should be exploring this.”

So she and the other organizers invited two minimally verbal people who communicate by typing to participate in one of the meeting’s panel discussions, moderated by Vikram Jaswal, professor of psychology at the University of Virginia in Charlottesville.

They saw it as a way to ensure that the voices of autistic people help shape future directions for research and to counter a growing view that the field has been too one-sided, Kasari says.

But by the time the meeting concluded, Howard Shane, former director of the Center for Communication Enhancement at Boston Children’s Hospital in Massachusetts, had resigned from the group. In his letters to the organizers, which he shared with Spectrum, he raised concerns about how including Jaswal and two other participants provided a sheen of legitimacy to facilitated communication, a discredited technique in which a facilitator, often a parent, holds a letter board and uses voice, gestures and sometimes physical touch to prompt an autistic person to spell out a message. He also worried that the organizers had not critically evaluated the authenticity of the messages produced by one of the minimally verbal participants — a “known facilitated person,” according to Shane — who delivered primarily prepared statements to the group via his electronic tablet.

Tager-Flusberg says that she has great respect for Shane and the work he did discrediting facilitated communication in the 1990s but believes that he has become too rigid in his approach. “To deny that there is anyone at all who is capable of independent communication,” she says, “that, to me, is anti-science.” In a statement to Spectrum, Jaswal wrote, “I’m surprised that there would be objections to an opportunity to learn from members of the community that the workshop was intended to serve.”

Stephen Camarata, professor of hearing and speech sciences at Vanderbilt University in Nashville, Tennessee, who attended the meeting, says he is concerned that the field is becoming fractured. The tension is at the core of an ongoing debate among researchers about how far to go to validate the input gathered from minimally verbal people.

“It’s critically important to listen to what I call autistic voices,” Camarata says. “I worry that we are moving away from the commitment to be sure that we’re validating that it’s an authentic autistic voice.”

The question of authenticity has long been central to research on assisted and augmented communication.

Facilitated communication, which first emerged in the 1970s, was largely discredited after “message passing” tests demonstrated that minimally verbal people can answer questions correctly only if their facilitators are privy to the answers. But it never really went away. Trademarked forms of it, such as “spelling to communicate” and the “rapid prompting method,” continue to grow in popularity, even though there is still no rigorous evidence that the messages obtained represent the thoughts of the autistic person or that the use of the techniques improves educational outcomes.

Autistic people who use the spelling to communicate method glance at most letters for about a half-second before they point at them as they respond to questions, Jaswal found using eye-tracking technology, in a study published in May 2020 in Scientific Reports. He concluded that “nonspeaking autistic people who communicate with assistance can indeed offer insight into their condition and lives.”

Since its publication, Jaswal’s article has been held up by facilitated communication advocates as the scientific vindication they have sought. And yet Jaswal explicitly avoided conducting a message-passing test — the most definitive measure of the technique’s merit — because, he suggested, an unfamiliar experimental setting could heighten the anxiety of autistic study participants and mar their performance.

It is unclear why the same argument would not apply to the eye-tracking headgear participants had to wear in Jaswal’s study, says Katharine Beals, adjunct professor in the autism program at Drexel University in Philadelphia, Pennsylvania. Beals published a critique of the study in Evidence-Based Communication Assessment and Intervention, in which she noted that all but one of the nine participants could verbalize short phrases or sentences. “If one has the oral skills to pronounce words and the linguistic skills to type linguistically sophisticated responses to open-ended questions, one ought to be able, without any typing, to pronounce those linguistically sophisticated responses as well,” she wrote.

Complicating the picture further, many people now use electronic tablets with predictive texting, which enables them — and potentially their facilitators — to assemble complex sentences more rapidly than hunting and pecking at individual letters. Such techniques are becoming increasingly mainstream. For example, “Spellers,” a documentary film released this year whose producers include activist Jenny McCarthy, tells the story of eight minimally verbal people with autism “who all found their voice through the miraculous process of using a letter board to communicate their thoughts and feelings,” as the narrator puts it. And in the new novel “Happiness Falls,” which the talk show “Good Morning America” selected for its September book club, writer Angie Kim describes a child with Angelman syndrome who learns to communicate by spelling; Kim also volunteers at a spelling to communicate center called I-ASC.

Some universities have even started to permit the use of facilitated communication in their classrooms. And in May, two minimally verbal autistic students who used facilitated communication graduated from the University of California, Berkeley, and another graduated summa cum laude in English at the University of California, Los Angeles.

Proponents of facilitated communication argue that minimally verbal people should be treated like people with locked-in syndrome: intellectually competent, but with a limited ability to communicate because of poor motor skills and possibly sensory overload. Some minimally verbal people do have childhood apraxia of speech, and there are also hard-to-classify cases of autistic people with low-support needs who type independently in some settings and speak in others. For instance, Tiffany Joseph, a 41-year-old autistic influencer with more than 38,000 followers on Instagram, identifies as nonspeaking even though videos on YouTube show that she is able to speak fluently.

The seeming resurgence of facilitated communication can be tied, in part, to the rise of the neurodiversity movement, says Amy Lutz, senior lecturer in the history and sociology of science at the University of Pennsylvania, whose book “Chasing the Intact Mind: How the Severely Autistic and Intellectually Disabled Were Excluded From the Debates That Affect Them Most” is scheduled to be published by Oxford University Press in October. “A lot of neurodiversity advocates are saying that nobody is cognitively impaired,” she says.

Most minimally verbal people, however, have significant cognitive problems related to information processing, which limits their language skills, research shows. Many autistic people also have a condition called hyperlexia, Camarata notes. As a result, they may be captivated by the standardized shapes of numbers and letters but have little or no reading comprehension.

In their effort to include minimally verbal people in the January symposium, Tager-Flusberg and Kasari reached out to the nonprofit Communication First in Washington, D.C., which advocates for the use of facilitated communication in schools and health-care settings. Jaswal’s wife, Tauna Szymanski, a lawyer, is the organization’s executive director.

The organization has ties to families that include minimally verbal people, two of whom ended up agreeing to participate in the program. Kasari says she vetted the participants by having lengthy online conversations with them without a facilitator present.

One of those people was Grant Blasko, who developed his typing skills through the rapid prompting method and other forms of facilitated communication. During the panel session with Jaswal and his opening remarks the previous day, Blasko appeared to communicate via his tablet with the occasional help of a person off-screen.

Kasari says that Blasko and the other typers were a valuable addition to the meeting. One request they had was for an electronic voice that sounds more like their real voice. “They were independent and actually had a sense of humor,” she says. “I think they’re pretty amazing.”

Others at the meeting and on social media, however, said they were deeply disturbed by the decision to include users of facilitated communication.

Shane felt that Blasko’s presentation was not only a waste of time, but also harmful to the community. “The mere presence of proponents of facilitated methods adds legitimacy to spurious and harmful methods that should not be promoted in a workshop of this nature,” he wrote in his resignation letter.

Although Shane declined to comment for this story, in a previous interview with Spectrum on the topic of facilitated communication he noted that some of his patients do become more proficient at typing than speaking, but even those are only producing simple phrases — nothing like what was on display at the meeting.

In his letter, Shane suggested that the organizers had been taken in by their “subjective impression rather than science” and challenged them to bring Blasko in for a “a double-blind investigation that explores the authorship question.”

Tager-Flusberg and Kasari say they are seeking to rigorously address some of the issues raised at the meeting. They recently received a National Institutes of Health grant called “PETAL: Promoting Early Intervention Timing and Attention to Language.” Beginning in January, they will conduct intensive screening and monitoring of infants in Los Angeles and Boston who have an older sibling with autism and therefore an increased likelihood of having the condition themselves. They will then test whether intense language coaching can help improve the children’s outcomes. A second study they are launching, also funded by the National Institutes of Health, will focus on the degree to which minimally verbal children have knowledge of letters and numbers.

“Let’s say we identify that 10 percent of these kids do have some pre-literacy skills, surely speech pathologists should be taking that into account,” Tager-Flusberg says. “If we find there are none, that’s something the literature needs to acknowledge.”

In the meantime, Camarata says he would like to see greater transparency in how autistic voices are vetted for future scientific meetings. He believes there needs to be a “standard protocol” for validating the authorship of those who represent the autistic community and are using any form of assisted or augmented communication. That protocol, he says, should be disclosed during scientific meetings, just as conflict-of-interest statements commonly are.

“I want to have access to these autistic voices,” Camarata says. “The Howard Shanes of the world who rightfully are concerned about message authorship can say, ‘Yeah, that appears to be a decent protocol.’”

Cite this article: https://doi.org/10.53053/KAFJ6454

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