In “The Atlantic” Rose Eveleth writes:
The terms “high-functioning” and “low-functioning” have no medical meaning. Nearly every expert I talked to referenced a common mantra in autism: When you’ve met one person with autism, you’ve met one person with autism. Which sounds nice, but is not particularly helpful when looking for meaning.
“With the spectrum, there’s a wide range, we’re still trying to figure out what that wide range means,” said Stephen Edelson, the director of the Autism Research Institute. “I don’t have a great answer. Scientific understanding of autism certainly continues to evolve,” said Paul Wang, the head of medical research at Autism Speaks. “I think there’s no one continuum necessarily,” says Lisa Gilotty, the autism-spectrum-disorders program chief at the National Institute of Mental Health. “It’s hard because … different people will break that up in very different ways, I’m not sure any of those ways are accurate.”
“It’s almost like if you look in the stars in the sky and say, ‘Oh, there’s Orion’s belt. And oh, there’s the Big Dipper.’ You could also look at the stars and say they cluster a different way. And I think that’s still where we are with autism,” said Jeffrey Broscoe, the director of the population health ethics department at the University of Miami.
And perhaps because the spectrum has no agreed upon poles, there is very little data about how autistic people might be distributed along the spectrum. Different studies measure things like intellectual disability, and verbal ability, and self-injurious behavior in certain populations, but researchers know very little about what the autism population looks like as a whole.
….ike so much of psychiatry, autism is a construct, a conceptual framework that will sooner or later outlive its usefulness. And the spectral characterization of autism might work for now, but it might not work forever.
“Right now the best way to approach autism is to think about it as a spectrum condition, but it’s quite possible that in the next 10 to 15 years, we’ll start understanding these better—not just genetics but the real pathophysiology,” says Broscoe. One day it might be lots of different diagnoses, each pinned to a specific cause or mutation or biological breakdown. Just as people once thought of all cancers as singular, and now think about and treat breast cancer and lung cancer and colon cancer differently. Autism, Broscoe says, “may look more like cancer one day.”
Roy Grinker, an anthropologist whose book, Unstrange Minds: Remapping the World of Autism, combines his personal experiences with an autistic daughter, and academic research into autism, laughed about the idea that autism was a single, “real” thing. “There’s not a real thing out there called autism! There are complex neural pathways that lead to different behaviors and traits that we have decided right now is best understood by a framework called autism. But I have no confidence that in 30 years we’ll still use the word autism.”
* * *
This isn’t to say there aren’t robust research efforts focused on autism. This year, the National Institutes of Health alone spent $189 million dollars on autism research. In 2014, President Obama signed a bill called the Autism CARES Act which promises $1.3 billion in federal funding for autism research over the next five years. In 2014, the organization Autism Speaks spent $21.2 million on autism research.
But most of the funding is for figuring out the causes of the disorder, trying to identify biomarkers and genetic clues, and attempts to understand potential environmental contributors. Very little of it goes to sorting out what the spectrum looks like and how the population is distributed along it.
But even looking at the data that does exist reveals that it’s tough to get a comprehensive look at gradients along the spectrum. For a while, experts might have said that the spectrum went from “high functioning” to “low functioning.” But those terms were never clearly defined. “We just don’t have good ways of measuring functioning-levels overall,” Anne Roux, a researcher at Drexel’s Autism Institute told me in an email. “For example, we know that 60 [percent to] 70 percent of people with autism have co-occurring health and mental-health diagnoses. Yet, there are really no measures that account for the role of co-occurring disorders in how people function.”
And even if you try to pick a more concrete measure, attempts to plot autistic people fall apart pretty quickly. Take the CDC data on intellectual impairment. In their most recent report, released in 2014 but using data from 2010, researchers found that 31 percent of 8-year-old children with autism qualified as intellectually disabled, with IQ scores below 70, and 23 percent qualified as “borderline” with scores between 70 and 85. But in their 2000 report, between 40 percent and 62 percent of children studied were considered intellectually disabled. So, are the majority of autistic people intellectually disabled? Or only one-third?
Part of why this information can be hard to track is due to changes in how autism is diagnosed and classified. The latest edition of the DSM, published in May of 2013, did away with Asperger’s syndrome, a condition often seen as existing just beyond one end of the autistic spectrum. People once diagnosed with Asperger’s have some of the same behaviors as autistic people do—repetitive behaviors, difficulties with social interaction—but often have far fewer problems with verbal language. Now that Asperger’s syndrome is no longer a diagnosis, some of those people fell into an autism diagnosis, and some were simply no longer considered disabled. Wang says that the shifting CDC numbers on intellectual disability reflect diagnosis, not an underlying truth about autism.