Yale examine on misery in autistic toddlers attracts ethics considerations

Yale Daily News

A Yale study that used mechanical spiders to evaluate how autistic toddlers respond to emotional stress generated widespread criticism on social media of their methods of inducing anxiety in children.

The study, titled “Participate Less, Fear More: Increased Exposure to Social Threats in Infants with Autism Spectrum Disorder,” was published earlier this month and examined the responses of infants to a variety of anxiety-inducing tubes. Yale researchers Katarzyna Chawarska, Suzanne Macari and Angelina Vernetti conducted the study at the Yale Child Study Center with the aim of better understanding the emotional difficulties in autistic children.

News of the study sparked a firestorm on Twitter this week as people reacted in horror at their methods. Critics, including Yale students, academics, and people with autism, said the study could cause permanent harm to the young participants.

“There are all kinds of messages sent by people with autism that are misunderstood, misinterpreted, or generally ignored,” said Jill Pluquailec, an autism researcher at Sheffield Hallam University. “This study really embodies how much children’s experiences are rejected for what [the researchers] I would say it’s for the sake of science. “

The methodology

The researchers looked at how toddlers reacted to potentially threatening stimuli – including masked strangers and a mechanical dinosaur. The paper explains that they looked at how desperate the toddlers were, the visual attention they paid to the stimulus, and how they tried to regulate their emotions. Her goal was to better understand the differences in emotional response between autistic and neurotypical children, as this could provide clues on how to avoid emotional problems, including anxiety and depression, that autistic children often develop later in life.

42 autistic toddlers and 22 typically developing toddlers participated in the study. The children were about two years old. Participants with ASD were referred to a university clinic by their parents or health care providers for differential diagnosis of ASD, and the typically developing children were advertised between November 2015 and October 2018.

“The probes were designed to induce fear through encounters with novel and potentially threatening stimuli,” the study says.

Initially, there were three attempts in which a large mechanical spider crawled towards the child, the paper explains. Then a stranger in dark clothes, hat and sunglasses entered the room, approached and leaned over to the child for three seconds. Then a stranger in dark clothes and a “grotesque” mask entered the room. The masks ranged from Star Wars characters to vampires. Finally, there were three attempts in which a mechanical dinosaur with red eyes approached the child.

The researchers attempted to rate the intensity of the toddlers’ response by rating their facial and voice strain, including excitement and crying. Additionally, they calculated the time the toddlers spent investigating the threat compared to other areas of the room. The researchers examined toddlers’ strategies for emotional regulation, e.g. For example, whether the children were trying to communicate or reaching out to their parents, moving away from the threat, sucking their thumbs, or flapping their hands in fear. Although there were different responses, all the children reacted slightly to the probes, at most raising their eyebrows or making a vocalization that seemed negative, Chawarska said.

The examiners waited at least 30 seconds between attempts for the child’s expression to return to normal. During this time the child played with bubbles or other toys. The child’s parents were kept at a distance throughout the experiments, but instructed to maintain neutral behavior. The researchers observed the children’s reaction through two video cameras. They also observed the children’s physiological responses by tracking their skin conductivity levels and found that they were closely related to their behavioral response, Chawarska told the news.

Criticism and reaction

Since the study was published, thousands of people on Twitter have responded to this in the form of tweets as well as responses to a poll – which received 1,400 votes – posted by @AnnMemmott, who is autistic, asking if people thought the study was fine. 94 percent of respondents said the study was out of order. Critics of the study, including students from Yale, argued that it tortured the children and was a potentially traumatic experience.

“I’m trying to figure out what we as Yale students can do to stop this because it’s gross and exhausting,” wrote Lex Schultz ’24 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 December 16, the researchers released a statement that descriptions of the study had been misinterpreted. They argued that the experiment was not harmful to the children. In addition, the parents of the toddlers gave their consent, were present during the entire experiment and could withdraw their consent at any time. The researchers saw almost all of the children in the study again when they turned three, Chawarska said.

“The events used to evoke emotional responses were very brief, low-intensity, interspersed with playtime, and reflected what the children might experience in the real world,” the statement said. “For example a stranger approaching in a playground, a Halloween costume or a new mechanical toy.”

The study was given the go-ahead by the Yale Institutional Review Board and adhered to state regulations on ethics in scientific research, the researchers clarified. In addition, the methods used to determine children’s reactions have been used for decades and are well validated, they wrote.

Review process and ethics

Stephen Latham, director of the Interdisciplinary Center for Bioethics at Yale, stated that institutional review boards review study protocols to determine the quality of science. They also investigate the risk of a trial and review the language of the informed consent agreement to make sure it is clear enough to be easily understood. Latham was not involved in the review of this study.

Under federal regulations, children are considered vulnerable people, Latham said. This means that studies they are involved in must be rated as below minimum risk, which means that participants are at lower risk than they are in everyday life.

“To the extent that small babies see strange objects in everyday life – lawnmowers, mixers, toys – strangers lean on them, people wear face covers and stand near them in everyday life, and they do, this study does not close pose greater risk than these young children would encounter in their daily lives, ”Latham said.

In addition, Chawarska noted that she and her colleagues hadn’t developed the protocol they used to induce anxiety. 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 children with various neurodevelopmental disorders.

But Pluquailec said the methods, while often used, are not necessarily ethical. She noted that the researchers’ methods of assessing emotional distress and alertness to the threat did not take into account the way many autistic people say they respond to stimuli.

The study found that autistic toddlers were less affected by the mechanical objects and masks than by the stranger. The autistic children tried various strategies to regulate their emotional response, but were less likely to make eye contact or try to be around their parents than the other children in the study.

Pluquailec said that making eye contact can often be painful for autistic people and that they may still be careful. In addition, some autistic people have delayed emergency reactions.

“The answers they looked at were seen through a non-autistic lens,” said Pluquailec. “They said, ‘This kid isn’t showing what we would normally expect as a stress response, so we’ll move on.’ On the other hand, if you ask autistic people, they would tell you that outwardly they might look like nothing is going on, and they are absolutely fine, and inside, they are really experiencing severe, prolonged suffering. “

The researchers measured the intensity of facial stress on a scale from zero to three and the intensity of voice stress on a scale from zero to five. According to the study, the children’s responses hovered around one on the intensity of exposure scale, which means the children’s brows were slightly raised, their eyes were slightly wide, or their mouth was slightly open. Additionally, they may have made a vocalization that appears to be negative or used negative words like “no” or “out,” explained Chawarska.

“We dedicated our lives to children with autism and opened the first clinic for children under the age of two,” said Chawarska. “Under no circumstances would we try to alarm children or make them unhappy at any point for no good reason.”

Latham said that part of the controversy surrounding the study could stem from a larger debate within the autism community as to whether autism should be classified as a disability or as a neurological diversity.

David Amaral – professor at the University of California at Davis and editor-in-chief of the journal Autism Research – said the journal did a thorough review of the study before it was published on Dec. 7. One of the first reviewers was someone on the autism spectrum, he wrote in an email to the news. None of the reviewers checked the box to indicate ethical concerns.

Chawarska said 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. They did not state whether they were involved in the review of this study.

The Yale Child Study Center is part of the Yale School of Medicine.

Rose Horowitch | rose.horowitch@yale.edu

Comments are closed.