Autism Research at a Crossroads | Spectrum | Autism Research News

aLutz 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 home to wander on his own. Several times, the family found him walking down a nearby busy road, playing with his iPod, and traffic stopped in both directions. He also hurt himself at times, was aggressive, and hit Lutz and other adult family members.

It was his aggression that led the family to bring Jonah to the Kennedy Krieger Institute in Baltimore, Maryland. He entered at the age of nine and stayed for about a year. Lutz said his behavior initially improved when he got home, but it wasn’t until he started ECT at age 11 that it really began to stabilize. And although Jonah would still occasionally hit himself or bite his hand when upset, this is “a tiny part” of the harmful behavior he was displaying.

Lutz said he still lacked “safety awareness”. When Jonah was 16, the family tried, for once, a proper vacation: a cruise. The voyage began in Baltimore, but the ship had barely left port before Lutz realized they had miscalculated. As the family walks around the upper deck, with Lutz explaining to Jonah the parts of the ship and their plans for the week, he notices the water — the Atlantic Ocean — all around them.

He said “swimming”.

“No, no,” his parents told him, and pointed to the ponds, which were still vacant. “We can swim in those when they’re ready.”

After a few minutes, he simply broke the fence. She said Lutz’s husband had to get him out with a “soccer ball”. The rest of the voyage was a constant watch to keep Jonah from overtaking the boat. “You won’t be too far from the railing on a cruise ship,” Lutz said.

Yunnan is 24 years old now. 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 holds a Ph.D. from the University of Pennsylvania, in the history and sociology of science, and is a founding board member of the National Council for Severe Autism. She would like a formal way to distinguish Jonah and his needs and experiences from autistic people who are less or differently autistic. So when the file Lancet The report of the Committee on the Future of Clinical Research and Care in Autism was released online in December 2021, and Lutz felt a glimmer of hope.

The 53-page report was headed by Kathryn Lord and Tony Sharman, and included 30 other co-authors. Aimed at investigating how best to meet the needs of people with autism and their families around the world in the next five years, it was compiled by stakeholders on six continents and included perspectives from clinicians, healthcare providers, researchers, parents, advocates and the self. -Supporters. Among her many recommendations, she suggested using “deep autism” as an “administrative term” for people with autism who need 24-hour access to an adult if anxiety arises, who cannot be left alone in a residence and cannot be looked after. “Daily Adaptation Needs.” The panel recognized that these people would likely have an IQ of less than 50 or “limited language” or both, thus defining profound autism by intellectual or language impairment, and estimated that this description would fit between 18 and 48 percent of the worldwide autistic population. the scientist.

These guys would look a lot like Jonah, and this was like a progression to Lutz. She tweeted about the report, calling it “big, big news”.

Her tweet was met with a response from more than two dozen Twitter accounts that announced her autism identity. There was broader opposition to the report itself as well. Within two months of Lancet Publishing the report online, the Global Autism Task Force on Autism Research—about two dozen autistic groups from around the world—published an open letter to the panel, criticizing (among other things) the proposed use of the term profound autism, calling it “deeply problematic.” Then, in September, Elizabeth Pellicano and colleagues published a paper titled “Ability Approaches to Understanding and Supporting Adult Autism,” writing that although some “call for the creation of a separate diagnostic category of ‘profound’ or ‘severe autism’, those with severe disabilities”, the authors felt the designation “would likely exclude” a group of people with autism from the “concern, dignity, and respect afforded to others”.

Pellicano’s work has been praised by apologists and others. Her tweet on paper received more than 1,600 likes. But for Lutz, it feels like every step forward meets that kind of resistance, and that can be crazy. She said she was sure the neurodiversity movement was biased in favor of its “high-functioning” membership, and willfully ignores the reality of people like Jonah and families like her. The autism advocates who dominate online conversations think they “know what it’s like to be like Jonah,” she told me, “but they don’t, because they’ve never been cruel.”

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

Amy Lutz

Micro-acting may be seen as far back 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 Us,” is often credited with launching today’s self-advocacy movement. Sinclair’s letter began with the statement that “parents often report that learning their child has autism was the most painful thing that has ever happened to them,” and went on to describe the “grief” the parents felt as the loss of the “normal child” they had hoped for but “didn’t show up.” into being.”

However, a child did appear – an autistic child – Sinclair said, reminding the audience that this child is “here waiting for you”.

It was a watershed moment, and in the nearly 30 years since that conference, the neurodiversity movement has ballooned. But if there’s a fly in this rhetoric, it’s the fact that some autistic people lack even basic verbal communication skills, not to mention Sinclair’s gift of prose as he addresses a crowd and talks about “we.”

To avoid microrepresentation in autism, McCoy said, the group will need to interact with those who are able to express their own interests, but also with those with “more profound autism” and “patients and caregivers,” as well as clinicians and others. If a group relied solely on “engaging with autistic self-advocates to understand the interests of the broader autistic population,” it “carries a risk of bias,” the paper states.

The paper also suggests that micro-acting has long been a part of the broader autism community. “At least in its early days, Autism Speaks fails to engage adequately with autism advocates,” the authors write, while ASAN [the Autistic Self Advocacy Network] Fails to deal appropriately with parents who raise concerns on behalf of their children.”

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