Autism research at the crossroads | Spectrum

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Amy Lutz has five children, including her autistic son, Jonah. She considers him deeply affected by his condition. Jonah would sometimes “run away” as a boy – disappearing from the house to wander on his own. Several times the family found him walking on a nearby busy road, playing with his iPod, traffic stopped in both directions. He was also self-harming and aggressive at times, hitting Lutz and other adult family members.

It was his aggression that led the family to take Jonah to the Kennedy Krieger Institute in Baltimore, Maryland. He entered at the age of 9 and stayed for almost a year. His behavior initially improved when he got home, but it wasn’t until he started regular electroconvulsive therapy at age 11 that he really started to stabilize, Lutz said. And while Jonah still sometimes hits himself or bites his hand when he’s upset, this is only a “small fraction” of the harmful behavior he used to display.

But he still lacks “security awareness,” Lutz said. When Jonah was 16, the family tried to have a real vacation for once: a cruise. The voyage began in Baltimore, but the ship had barely left port when Lutz realized they had miscalculated. As the family walked the upper deck, as Lutz explained to Jonah parts of the ship and their plans for the week, he saw the water—the Atlantic Ocean—all around them.

“Swim,” he said.

“No, no,” his parents said to him, pointing to the unfilled pools. “We can swim in that when they’re done.”

A few minutes later, he simply paused in front of the railing. Lutz’s husband had to knock him out with “a flying football kit,” she said. The rest of the trip was under constant surveillance to prevent Jonah from going overboard. “On a cruise ship, you’re never far from a rail,” Lutz said.

Jonah is now 24. He will almost certainly need a caregiver for the rest of his days. Lutz herself has already dedicated her personal and professional life to him. She has a Ph.D. from the University of Pennsylvania, in the history and sociology of science, and is a founding member of the National Council on Severe Autism. She would like an official way to distinguish Jonah, his needs and his experiences, from the autistic people who are less or differently affected by their autism. So when the Lancet The Commission on the Future of Care and Clinical Research in Autism report was released online in December 2021, Lutz felt a flash of hope.

The 53-page report was chaired by Catherine Lord and Tony Charman and featured an additional 30 co-authors. It was designed to explore how best to meet the needs of autistic people and families around the world over the next five years. lawyers. Among its many recommendations, it suggested using “profound autism” as an “administrative term” for autistic people who need 24-hour access to an adult if concerns arise, cannot be left alone in a home, and cannot can take care of “daily adjustment needs.” The committee recognized that these people were likely to have an IQ of less than 50 or “limited language” or both, defining profound autism as a mental or linguistic disability, and estimated that this description would fit between 18 and 48 percent of the population. autistic population worldwide.

Those people would be a lot like Jonah, and this seemed like progress to Lutz. She tweeted about the report, calling it “big, big news.”

Her tweet was blasted back by more than two dozen Twitter accounts proclaiming an autistic identity. And there was also a wider backlash against the report itself. Within two months of the Lancet In the online publication of the report, the Global Autistic Task Force on Autism Research – some two dozen autistic groups from around the world – published an open letter to the committee, criticizing (among other things) the proposed use of the term severe autism and the “highly problematic.” Then, in September, Elizabeth Pellicano and her colleagues published an article entitled “A Capabilities Approach to Understanding and Supporting Autistic Adulthood,” writing that while some “called for the creation of a separate diagnostic category of ‘severe’ or “severe autism” for those with the most severe disabilities,” the authors believed the label “would potentially exclude” a group of autistic people from “the care, dignity, and respect afforded to others.”

Self-Defenders and others praised Pellicano’s work; her tweet on the newspaper received more than 1,600 likes. But to Lutz, it feels like every step forward meets this kind of resistance, and that can be maddening. She’s certain the neurodiversity movement is biased in favor of her own “high-functioning” membership, she said, and is deliberately ignoring the realities of people like Jonah and families like hers. The autistic self-defenders who dominate the online conversation think they “know what it’s like to be like Jonah,” she told me, “but they don’t, because they were never strict.”

What Lutz is complaining about is called partial representation, a term used to describe a group — political, social, whatever — that claims to speak for all of its members, but doesn’t. Lutz co-authored a 2020 paper on the subject with Matthew McCoy, who teaches medical ethics at the University of Pennsylvania. They defined partial representation as an actor who claims to “represent a particular group of people, but appropriately deals with only a subgroup in that group.”

Amy Lutz

Partial representation can already be seen as the birth of the neurodiversity movement. In 1993, at the International Conference on Autism in Toronto, Canada, an autistic man named Jim Sinclair took the stage to give a presentation. His speech, titled “Don’t grieve for us,” is often credited as the beginning of the current self-help movement. Sinclair’s speech began by stating that “parents often report that their child’s autistic learning was the most traumatic thing that ever happened to them,” and he went on to describe the “sadness” felt by parents as the loss of “the normal child “. which they hoped for, but which ‘never came to be’.

Yet a child has emerged — an autistic child — Sinclair said, reminding the audience that that child is “waiting here for you.”

It was a turning point, and in the nearly 30 years since that conference, the neurodiversity movement has grown tremendously. But if there’s a fly in that speech’s ointment, it’s the reality that some autistic people lack even the basic verbal communication skills, let alone the gift for prose that Sinclair displayed when addressing a crowd and talking about “us.” spoke.

McCoy said to avoid partial representation in autism, a group should communicate with those who are able to articulate their own interests, as well as those with the “deepest autism” and “patients and caregivers,” as well as doctors and others . . If a group relies solely on “engagement with autistic self-defenders to understand the interests of the wider autistic population,” then it “carries a risk of bias,” the paper argues.

The paper also suggests that partial representation has long been part of the wider autism community. “At least in the early days, Autism Speaks failed to engage appropriately with autistic self-defenders,” the authors wrote, “while ASAN [the Autistic Self Advocacy Network] has failed to appropriately reach out to parents who express concerns on behalf of their children.”

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