October 18, 2021

|

by: admin

|

Tags: Autistic, backlash, communication, Community, exposes, gaps, pauses, research, Spectrum

|

Categories: autism

Backlash from autistic group pauses analysis, exposes communication gaps | Spectrum

Opening up: The outcry on social media has led some researchers to improve their communication with the autistic community.

Klaus Vedfelt / Getty Images

For Spectrum 10K, the time from start to limbo was less than three weeks: An online outcry from autistic advocates forced the researchers behind the effort – the largest autism genetics study in the UK to date – to end their project indefinitely in September to pause.

This month, a second study – of early intervention to reduce signs of autism – faced a similar backlash after it was published.

In both cases, the research teams reacted quickly, apologizing and agreeing to enter into a dialogue with the demonstrators. But the incidents have led some scientists to wonder how social media pressures may affect autism science in the future. “I think everyone was paying attention,” said Maria Chahrour, assistant professor of genetics and neuroscience at the University of Texas’ Southwestern Medical Center at Dallas.

Criticism of the priorities and methods used by researchers in the autistic community is nothing new, say several scientists who spoke to Spectrum. What could change, however, is the ability of autistic self-advocates to raise their concerns so quickly and publicly.

Within two weeks of Spectrum 10K’s launch on August 24th, a Boycott Spectrum 10K page, Facebook group, and petition had raised some concerns about the study. The most important of them: that the study required participants to consent to their genetic data being shared with outside institutions without clarifying how those institutions might use the data and that the data could be used to perform prenatal testing Creating autism with the aim of eliminating autistic people. Similarly, advocates busted the “preventive” intervention study because they pursued a method that could limit autistic children ‘s access to diagnosis and services, or even be used as a pathway to “cure” autism.

A growing number of autism researchers have adopted participatory research, including people with autism in their work, to ensure they adequately address community concerns upfront. And this input has contributed to positively changing the goals and methods of a large number of studies. However, some scholars say they fear the tone of recent social media protests may stifle that flow of communication.

“The recent debates are widening an existing gap between the research community and people who distrust research, including those who may have good reasons,” said Mayada Elsabaggh, assistant professor of neurology and neurosurgery at McGill University in Montreal, Canada. Elsabbagh agreed to speak to Spectrum about the controversy, but not as a representative of Q1K, the large autism genetics study she is working on. Several other researchers declined Spectrum’s requests to discuss the response to the studies.

The responses from the autistic community, while helpful in some ways, could discourage young scientists from getting into autism research, says Kristelle Hudry, associate professor of developmental psychology at La Trobe University in Melbourne, Australia who co-led preventive research Treatment study. They could also thwart ongoing treatment studies and future investments in genetic research, others say.

“As the uncle of a malfunctioning autistic niece, I fear that it will” pause “therapy for families desperately trying to improve the quality of life for their disabled children,” said Evan Eichler, professor of genomic sciences at the University of Washington in Seattle , wrote in an email to Spectrum.

Persistent gaps:

Some of the harshest criticisms of recent studies – that the work ultimately aimed to eliminate or “cure” autistic people – came after both teams tried to forestall such concerns, they say.

Prior to launch, the Spectrum 10K team drafted the study in “Consultation with an Advisory Board of Autistic People and Their Families,” wrote Simon Baron-Cohen in a September 4 statement. Baron-Cohen, Professor of Developmental Psychopathology at the University of Cambridge in the UK, leads the Spectrum 10K project. Similarly, the team behind the early intervention study sought input from autistic people and their families in developing their approach, and worked with a diverse team of researchers with a range of lived experiences, says Hudry.

The negative response on social media appeared to be due to some media misrepresenting the results as a potential “cure for autism” rather than criticism of the actual science. However, some feedback was also targeted towards the study’s goals of increasing eye contact and reducing repetitive behavior or “stimulation” in autistic children, something that some autistic people say helps them regulate their emotions.

The online reactions show persistent gaps in researchers’ communication with those who their research most directly affects, says Damian Milton, a professor of intellectual and developmental disorders at the University of Kent in the UK, who is himself autistic. “Is Spectrum 10K really about wellbeing? If so, how [is that] conceived? I doubt that many autistic people would see this in the same way as those who lead the study. “

And the power of community response needs to be seen in the context of how scientists have dealt with disabled people in the past, says Sue Fletcher-Watson, professor of developmental psychology at the University of Edinburgh in Scotland.

“Participatory research, including prioritization, and broader public engagement and science communication, is just a lot harder than it looks,” says Fletcher-Watson. “It takes careful planning, the selection of methods, the recruitment of suitable contributors, and so on.”

The teams behind Spectrum10K and the Early Intervention Study say they are working to realign their efforts with the autistic community. The Spectrum 10K team plans to consult with “hundreds of autistic people and their parents” who represent a wide range of skills, concurrent conditions, and backgrounds, Baron-Cohen wrote in an email to Spectrum. And they plan to develop an impartial process to coordinate the exchanges.

The study break is likely to last until 2022, says Baron-Cohen, but “will allow us to help shape a consultation with the autism community to take all necessary precautions to reassure autistic people that the data might not be.” abused for eugenic purposes. “

Hudry and her colleagues are also rethinking whether their work “aligns with a perspective of neurodiversity and what impact a reduced diagnosis in early childhood might have on later support,” she says. “We can always improve.” You have reached out to petitioners for your study on Twitter and plan to meet with them.

“It’s really unfortunate when there is a misalignment between researchers and study participants that leads to these situations,” says Chahrour. “But hopefully this will stimulate fruitful discussions and move the field forward.”

close

Don’t miss these tips!

We don’t spam! Read our privacy policy for more info.