Yale Daily News
A Yale study that deployed mechanical spiders to assess how autistic toddlers respond to emotional distress has drawn widespread criticism on social media for its methods of eliciting fear in the children.
The study, titled “Attend Less, Fear More: Elevated Distress to Social Threat in Toddlers with Autism Spectrum Disorder,” was published earlier this month and examined toddlers’ reactions to a variety of fear-inducing probes. Yale researchers Katarzyna Chawarska, Suzanne Macari and Angelina Vernetti conducted the study at the Yale Child Study Center with the goal, they told the News, of better understanding emotional difficulties in autistic children.
News of the study generated a firestorm on Twitter this week as people reacted in horror to its methods. Critics, who included Yale students, academics and people with autism, said the study could cause lasting harm to the young participants.
“There are all sorts of messages that are sent by autistic people that are misunderstood, misinterpreted or ignored in general,” said Jill Pluquailec, an autism researcher at Sheffield Hallam University. “This study really epitomizes how much children’s experiences are dismissed for what [the researchers] would say is the sake of science.”
The researchers examined how toddlers responded to potentially threatening stimuli — including masked strangers and a mechanical dinosaur. The paper explains that they looked at how distressed the toddlers were, the visual attention they paid to the stimulus and how they tried to regulate their emotions. Their goal was to better understand variations in emotional response between autistic and neurotypical children, as this could give clues on how to head off emotional problems, including anxiety and depression, that autistic children often develop later in life.
Forty-two autistic toddlers and 22 typically developing toddlers participated in the study, according to the paper. The children were about two years old. Participants with ASD were referred to a university clinic for a differential diagnosis of ASD by their parents or health care providers, and the typically developing children were recruited through advertisements between November 2015 and October 2018.
“The probes were designed to elicit fear through encounters with novel and potentially threatening stimuli,” the study reads.
First, there were three trials in which a large mechanical spider crawled towards the child, the paper explains. Then, a female stranger wearing dark clothing, a hat and sunglasses entered the room, approached and leaned toward the child for three seconds. After, a female stranger dressed in dark clothes and wearing a “grotesque” mask entered the room. The masks ranged from Star Wars characters to vampires. Finally, there were three trials in which a mechanical dinosaur with red light-up eyes approached the child.
The researchers were trying to assess the intensity of the toddlers’ response by evaluating their facial and vocal distress, including fussing and crying. Additionally, they calculated the time the toddlers spent looking at the threat compared to other areas of the room. The researchers examined the toddlers’ strategies for emotional regulation, such as whether the children tried to communicate or reach towards their parents, moved away from the threat, sucked their thumb or flapped their hands in fear. Though there was variation in reactions, all of the children reacted mildly to the probes, at most raising their eyebrows or making a vocalization that seemed negative, Chawarska said.
In between the trials, the examiners waited at least 30 seconds for the child’s expression to return to normal. During that time, the child played with bubbles or other toys. The child’s parent was kept within arm’s length throughout the trials, but was instructed to maintain a neutral demeanor. The researchers observed the children’s reaction through two video cameras. They also observed the children’s physiological responses by tracking their skin conductance levels, and found it closely aligned to their behavioral response, Chawarska told the News.
Criticism and response
Since the study was published, thousands of people have reacted to it on Twitter, in the form of tweets, as well as in responses to a poll — which has received 1,400 votes — posted by @AnnMemmott, who is autistic, asking whether people thought the study was okay. 94 percent of respondents said the study was not okay. Critics of the study, including Yale students, argued that it tortured the children and was a potentially traumatic experience.
“I’m trying to figure out something we as Yale students can do to stop this because it’s disgusting and ableist,” Lex Schultz ’24 wrote on Twitter. Nolan Arkansas ’23 tweeted that the study would “torture babies with autism,” and noted that the lab’s website was down for maintenance earlier this week.
On Dec. 16, the researchers released a statement saying that descriptions of the study had been misinterpreted. They argued that the experiment was not detrimental to the children. Additionally, the toddlers’ parents gave informed consent, were present throughout the experiment and could revoke consent at any point. The researchers saw almost all the children in the study again when they turned three, Chawarska said.
“The events used to elicit emotional responses were very brief, had low intensity, were interspersed with playtime, and mirrored what the children might encounter in the real world,” the statement reads. “For instance, a stranger approaching on a playground, a Halloween costume, or a new mechanical toy.”
The study was given the green light by the Yale Institutional Review Board and adhered to federal regulations regarding ethics in scientific research, the researchers clarified. Additionally, the methods of eliciting the children’s responses have been in use for decades and are well validated, they wrote.
Review process and ethics
Stephen Latham, director of Yale’s Interdisciplinary Center for Bioethics, explained that institutional review boards examine study protocols to determine the quality of the science. They also look at a study’s risk level and scrutinize the language of the informed consent agreement to make sure it is plain enough to be easily understood. Latham was not involved in reviewing this study.
Under federal regulations, children are considered vulnerable subjects, Latham said. This means that studies involving them must be classified as below minimal risk, meaning participants face less risk than they do during daily life.
“So to the extent that little babies in everyday life see strange objects — lawn mowers, blenders, toys — have strangers lean into them, have people wearing face coverings and standing near them in everyday life, and they do, this study doesn’t pose any more risk than these little kids would encounter in their everyday lives,” Latham said.
Additionally, Chawarska noted that she and her fellow researchers did not develop the fear-eliciting protocol they used. It was first introduced in 1999 to measure temperament in young children, and has been used in hundreds of studies in both typically developing children and in children with various neurodevelopmental disorders.
But Pluquailec said that even though the methods are often used, they are not necessarily ethical. She noted that the researchers’ methods of evaluating emotional distress and attention to the threat did not take into account the ways in which many autistic people say they respond to stimuli.
The study found that autistic toddlers were less distressed by the mechanical objects and masks but more distressed by the stranger. The autistic children tried to regulate their emotional response using a variety of strategies, but they were less likely to make eye contact or try to be near their parents than the other children in the study.
Pluquailec said that it can often be painful for autistic people to make eye contact, and that they still might be paying close attention. Additionally, some autistic people have delayed distress responses.
“The responses they were looking at, they were looking at through a non-autistic lens,” Pluquailec said. “They were saying, ‘That child’s not showing what we’d normally expect to see as a stress response so we’re going to keep going with it.’ Whereas if you ask autistic people, they would tell you that they might look outwardly like nothing’s going on at all and they’re absolutely fine, and inwardly that they’re experiencing really severe, long-lasting distress.”
The researchers gauged the intensity of facial distress on a scale from zero to three and the intensity of vocal distress on a scale of zero to five, the paper notes. According to the study, the children’s responses hovered around one on the scale of intensity of distress, which means the children’s brows were slightly raised, their eyes were slightly widened or their mouth was slightly open. Additionally, they may have made a vocalization that seems to be negative or used negative words like “no” or “get out,” Chawarska explained.
“We dedicated our lives to kids with autism, we started the first clinic for kids under two,” Chawarska said. “We would never, ever, under any circumstances, try to distress children or make them unhappy for no good reason at any point.”
Latham said that some of the controversy around the study might be due to a larger debate within the autism community over whether autism should be classified as a disability or as neurological diversity.
David Amaral — a professor at the University of California, Davis, and editor in chief of the journal Autism Research — said the journal conducted a robust review of the study before publishing it on Dec. 7. One of the initial reviewers was a person on the autism spectrum, he wrote in an email to the News. None of the reviewers checked the box indicating concern about ethical issues.
Chawarska said that parents of people with autism and adults with autism are involved in the grant review process and set agendas for research at the federal level. She did not specify if they were involved in reviewing this study.
The Yale Child Study Center is part of the Yale School of Medicine.
Rose Horowitch | email@example.com