From The Atlantic
By Rose Eveleth
November 4, 2015
The way people describe the condition makes it difficult, if not impossible, to define.
If I tell people that I have two autistic brothers, I often get asked some variation of the same question: “Where are they on the spectrum?” There are better and worse ways that people ask. “How bad are they?” is a worse way. So is any form of asking whether they’re “high-functioning or low-functioning.”
“How much support do they need?” is much better. But no matter how the question is asked, it is always really hard to answer. My brothers’ behaviors have changed drastically over time. I don’t feel like I know enough other autistic people to compare them on a line. And I don’t even know what that line would measure.
I understand why people ask. Many people are familiar with the idea that autism is a spectrum. It’s even in the name, “autism spectrum disorder.” And many people are familiar with the concept of a spectrum. In school, students learn about the visible light spectrum that goes from violet to red. There’s the political spectrum, with the right wing on one side and the left wing on another. Spectrums don’t, by definition, have ends. But in order for them to be useful to us, we plot things, like points of light and members of Congress, along those lines.
Charting where an individual falls on the autism spectrum, though, is nearly impossible. I know because I recently tried to figure out how to do it. After talking to doctors, epidemiologists, self-advocates, and anthropologists, I learned that the more you try to pin down what the autism spectrum actually looks like, the looser your grasp on it will become.
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.
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Autism was not always considered a spectral phenomena. In 1938, the Austrian pediatrician Hans Asperger gave a speech before an group of Nazis. The patients in his clinic were largely children with autism, and he was worried that they might be sent off to Nazi extermination camps. So to convince his audience that they should be spared, he focused on his “most promising” patients. The ones that some would later call “high-functioning.”
But it wasn’t until the 1980s that the autism “spectrum” really took hold, thanks mainly to the work of a researcher named Lorna Wing. (Wing also rediscovered the work of Asperger and introduced the term Asperger’s Syndrome, which was recently removed from the Diagnostic and Statistical Manual of Mental Disorders, the manual psychiatrists use to classify mental-health issues.)
“I have no confidence that in 30 years we’ll still use the word autism.”
Since Wing’s work first began, autism has become nearly inseparable from the idea of a spectrum. But like 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.”
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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% 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.
The CDC data on intellectual ability among autistic people is hard to use as a baseline for other reasons, too. First, the data only tracks 8-year-olds, even though it’s clear that the characteristics of an autistic person change over time. (Many think the emphasis on children in autism research is a problem in and of itself.) The CDC cautions that its data shouldn’t be used to talk about all autistic people. “It is important to remember that this estimate is based on 8-year-old children living in 11 communities. It does not represent the entire population of children in the United States,” says one fact sheet on the statistics.
Plus, there are questions about whether or not traditional IQ tests are the best way to measure the intelligence of autistic people. But when researchers replaced the standard IQ tests with tests that relied less on timed responses and social cues, autistic students performed 30 percentile points better. Some jumped 70 points.
Some people I talked to wanted to define the spectrum as a continuum that measures the level of support a person needs. By that measure, someone who can go to college, hold a job, get married, and require little to no assistance in their daily life, might be on one end. And someone who is non-verbal and self-injures, who needs monitoring and assistance around the clock, might be on the other.
Paul Schattuck, another researcher at Drexel’s Autism Institute, is trying to figure out a way to study autism that can speak to the whole population based on outcomes: focusing on how a person lives and how hard it is for them to get through their day. “By contrast, most of the knowledge-base is the opposite,” he says. “Most of the research knowledge about what autism looks like, how life turns out, who gets a job, most of those are clinical or community samples.”
“If you have a spectrum you can move along a spectrum.”
Outcomes like these—who gets a job, who gets a degree, who can live alone—are perhaps the most helpful measure for actual autistic people (some organizations, like the Autistic Self Advocacy Network have long argued that more money should be spent on research into services than on research into genetics). “You want, minimally, to be able to say [with] some accuracy the level of need and vulnerability of people,” says Silverman. But there is very little data about the services autistic people need and use broadly. And the support someone needs is likely to change over time.
There are parallels to this kind of confusion all over psychiatry, says Chloe Silverman, a historian of science at Drexel who wrote a book on the history of autism. “Almost any psychiatric disorder involves some uncertainty (efforts of the authors of the DSM notwithstanding),” she told me in an email. Take ADHD for example. Some experts contest the diagnosis entirely, others define the symptoms broadly or narrowly. And like autism, ADHD had its moment of cultural panic, a time when everybody seemed to have it, and nobody seemed to really know what it was.
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In his book The Emperor of All Maladies, Siddhartha Mukherjee chronicles the power of giving a cause a face. Particularly a child’s face. In 1948, the founders of the Children’s Cancer Research Fund were on the hunt for a “mascot.” They picked the only child in the ward who was healthy enough to put on a poster, a child named Einar Gustafson. Mukherjee describes Gustafson as a “lanky, cherubic, blue-eyed, blond child.” You’ve probably seen Gustafson’s face before, but you won’t recognize the name. The founders of the Children’s Cancer Research Fund renamed him Jimmy. In the year before Jimmy, the fund raised $45,456. The year after they started using him in advertisements, they raised $231,000.
Mukherjee adds: “But to measure the genius of the Jimmy campaign in dollars and cents is to miss its point. The Jimmy Fund campaign was an early experiment—the building of another model. The campaign against cancer, it turned out, was much like a political campaign: It needed icons, mascots, images, slogans—the strategies of advertising as much as the tools of science. For any illness to rise to political prominence, it needed to be marketed, just as a political campaign needed marketing.”
I bring this up because autism is no different. I get a lot of press releases about autism. And sometimes it can feel like different organizations (and there are a lot of autism organizations) are describing wildly different disorders. Some show images of adults with college degrees, able to hold a job and participate in social outings with the right support. Others show children who are non-verbal, who injure themselves and others.
“There is a battle over, ‘what does it mean to have autism and how do we get to portray it?’” says Broscoe. This is a fight that dictates not just the public’s perception of people with autism, but also policy decisions and research choices that affect those people.
As a part of this fight, people will sometimes make generalizations. Most autistic people, they’ll argue, are this way, and therefore this is the way autism is talked about. Some think that folks pushing the idea that autistic people are non-verbal and highly dependent does a disservice to autistic people.
Others think that groups who advocate for neurodiversity and self-advocacy are ignoring their needs. “You do have a few people out there who have fairly good communication skills on the spectrum, and they tend to speak for everyone on the spectrum,” says Edelson.
One of the groups that is often accused of doing that is the Autism Self Advocacy Network, founded and run by Ari Ne’eman. Ne’eman is a leader of what’s called the neurodiversity movement—the idea that autistic people have brains that are wired differently, and that the diversity of neural pathways present in the world should be celebrated and not pathologized. Critics of the neurodiversity movement often say that it ignores people with more significant impairment. But Ne’eman says that he doesn’t think their group is advocating for a particular part of the spectrum.
“I think there are often different ideas of autism, but not necessarily different populations being referred to,” he told me. “I think the problem is that we have this societal perception that for autism to be viewed as serious or relevant that person has to be miserable and their family has to be miserable. So if we see autistic people and families who are happy and are well supported and are having good outcomes then the argument gets made well this is not the real autism.”
But there is a real challenge in accepting that autism can be something that encompasses such a wide range of people and symptoms and needs. “It’s something troublesome about a classification that can include within it, somebody like who might be the CEO of a technology company and someone who is completely non-verbal and self injurious and has to have around-the-clock care. How do we, how do you deal with that?” said Grinker.
But Grinker doesn’t think we should get rid of the idea of the spectrum either. “There are good parts and bad parts. The bad part is that the term is used so promiscuously, it’s used so much that it lacks specificity. The good part is that it has less stigma now and they see a capacity for change within it, if you have a spectrum, you can move along a spectrum.”
Of course, simply having data on what the population of autistic people looks like won’t solve the question of representation. “As we know from all kinds of debates, having good data on something does not resolve the public debate,” Silverman says.
Ne’eman admits that the complex nature of autism can be a challenge when it comes to advocacy. “Particularly when dealing with the media and legislators who often have trouble parsing nuance,” he says.
But when I asked him if some days, he just wished he could put a cute little blond boy on his posters and call it a day, he gave me a laugh that sounded like a scolding. “I think there are plenty of people who have made extensive fortunes off doing just that. The people who have made their careers on that, and have really done autistic people and our families a tremendous disservice.”