"Autism" definition wars thread

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firemonkey wrote:
@loveandotherdrugs Would you say a person is disordered if they are very intelligent , but need quite a lot of support to maintain their independence due to executive functioning difficulties and poor practical intelligence ?

This is a most practical way, have ever seen this particular , set of circumstances worded .!

Depends what you mean by intelligent? great memory, good at maths?, intelligence is probably made up of many things, one of the most important being cause & effect.

A wider public conversation has arisen over whether it's time for a shift in how we think about categories of autism, amid rising interest in the disorder across the country.

For instance, some op-eds, written by parents and activists, argue the current definition of the condition as a unified spectrum comprising several subtypes is too broad, and the unique issues and intensive needs of the most severe cases get lost.

It's an argument that sits poorly with Ari Ne'eman, assistant professor of health policy and management at the T.H. Chan School of Public Health and a longtime disability rights activist. He worries that creating a high-needs category risks a return to segregation and neglect—though he doesn't rule out the possibility that other subdivisions may make more sense.

"The concern is this is a reboot of that fight, with this 'profound autism' construct as a new vehicle for litigating fights about inclusion that took place a generation ago around intellectual disability," said Ne'eman, who was an advisor to the working group responsible for creating the umbrella term autism spectrum disorder more than a dozen years ago.

"I worry that the 'profound autism' construct is a political category designed to justify more segregated services, more than a scientific one—there is not really a clear reason to believe the different groups it combines belong in a distinct diagnosis," he said.

The overall rise in diagnosis, Ne'eman explained, is likely due in large part to greater awareness on the parts of schools, parents, and clinicians. In addition, the medical establishment has been refining diagnostic criteria, changing who would qualify as autistic.

The American Psychiatric Association's official handbook is called the Diagnostic and Statistical Manual of Mental Disorders, or DSM, first published in 1952. Autism was officially recognized as a separate disorder in the DSM-III revision released in 1980. Prior to that, it was considered a form of schizophrenia.

A later edition also added a condition called pervasive developmental disorder—not otherwise specified, or PDD-NOS.

Those conditions were later consolidated. In 2013, the DSM-5—which Ne'eman advised on—further changed the game, including adding sensory issues to the diagnostic criteria and instigating a three-tiered categorization to distinguish between levels of support needs.

"Major factors contributing to the increase in autism diagnoses include diagnostic substitution and the broadening of the autism criteria," said Tara Eicher, a postdoctoral research fellow at the Chan School. "Both of these changes are overall positive, because they result in more people receiving the services they need."

Eicher's work focuses on identifying genetic causes of autism. To date, hundreds of genetic mutations have been implicated in autism, with more expected to be identified in the future, and in many cases the interactions between genetic mutations, gene expressions, and behavior remain unclear.

As calls for a new "profound" category grow louder, Ne'eman worries that such a category risks a return to problems surrounding care. In the 1970s through the 1990s, he explained, advocates in the field of intellectual disability rights successfully campaigned against institutionalization and sheltered workshop jobs at subminimum wages, which were common practices at the time.

But with more people who might once have been labeled intellectually disabled now diagnosed as autistic, Ne'eman fears the table could be reset.

Combining very different kinds of severe impairment—communication and cognition—into a single catch-all category could result in segregation of some patients and a shift away from community living, he argued.

Still, Ne'eman empathizes with the families of those with severe impairment who don't feel seen by the current system.

"I do have a lot of sympathy for families who say, "Listen, I want to be able to talk about the challenges around severe impairment," and to have a language for that, to recognize that things are often quite a bit harder than for people who can talk or don't have an intellectual disability."

That nuance is one reason Michael Stein, visiting professor of law at the Harvard Law School and executive director of the Harvard Law School Project on Disability, says the terms themselves matter less than how they're used.

"Whether the category is broader or whether it's narrower, ultimately, it's how scrupulous and thoughtful the clinicians and social policymakers are as far as how these individuals are treated and supported, rather than what label we place on them," he said.