The Truth About Autism: Scientists Reconsider What They Think They Know

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http://www.wired.com/medtech/health/magazine/16-03/ff_autism

The Truth About Autism: Scientists Reconsider What They Think They

Know

By Wolman 02.25.08 | 6:00 PM

The YouTube clip opens with a woman facing away from the camera,

rocking back and forth, flapping her hands awkwardly, and emitting an

eerie hum. She then performs strange repetitive behaviors: slapping a

piece of paper against a window, running a hand lengthwise over a

computer keyboard, twisting the knob of a drawer. She bats a necklace

with her hand and nuzzles her face against the pages of a book. And

you find yourself thinking: Who's shooting this footage of the

handicapped lady, and why do I always get sucked into watching the

latest viral video?

But then the words " A Translation " appear on a black screen, and for

the next five minutes, 27-year-old Baggs — who is autistic and

doesn't speak — describes in vivid and articulate terms what's going

on inside her head as she carries out these seemingly bizarre

actions. In a synthesized voice generated by a software application,

she explains that touching, tasting, and smelling allow her to have

a " constant conversation " with her surroundings. These forms of

nonverbal stimuli constitute her " native language, " Baggs explains,

and are no better or worse than spoken language. Yet her failure to

speak is seen as a deficit, she says, while other people's failure to

learn her language is seen as natural and acceptable.

And you find yourself thinking: She might have a point.

Baggs lives in a public housing project for the elderly and

handicapped near downtown Burlington, Vermont. She has short black

hair, a pointy nose, and round glasses. She usually wears a T-shirt

and baggy pants, and she spends a scary amount of time — day and

night — on the Internet: blogging, hanging out in Second Life, and

corresponding with her autie and aspie friends. (For the uninitiated,

that's autistic and Asperger's.)

On a blustery afternoon, Baggs reclines on a red futon in the

apartment of her neighbor (and best friend). She has a gray travel

pillow wrapped around her neck, a keyboard resting on her lap, and a

DynaVox VMax computer propped against her legs.

Like many people with autism, Baggs doesn't like to look you in the

eye and needs help with tasks like preparing a meal and taking a

shower. In conversation she'll occasionally grunt or sigh, but she

stopped speaking altogether in her early twenties. Instead, she types

120 words a minute, which the DynaVox then translates into a

synthesized female voice that sounds like a deadpan British

schoolteacher.

The YouTube post, she says, was a political statement, designed to

call attention to people's tendency to underestimate autistics. It

wasn't her first video post, but this one took off. " When the number

of viewers began to climb, I got scared out of my mind, " Baggs says.

As the hit count neared 100,000, her blog was flooded. At 200,000,

scientists were inviting her to visit their labs. By 300,000, the TV

people came calling, hearts warmed by the story of a young woman's

fiery spirit and the rare glimpse into what has long been regarded as

the solitary imprisonment of the autistic mind. " I've said a million

times that I'm not trapped in my own world,' " Baggs says. " Yet what

do most of these news stories lead with? Saying exactly that. "

I tell her that I asked one of the world's leading authorities on

autism to check out the video. The expert's opinion: Baggs must have

had outside help creating it, perhaps from one of her caregivers. Her

inability to talk, coupled with repetitive behaviors, lack of eye

contact, and the need for assistance with everyday tasks are telltale

signs of severe autism. Among all autistics, 75 percent are expected

to score in the mentally retarded range on standard intelligence

tests — that's an IQ of 70 or less.

People like Baggs fall at one end of an array of developmental

syndromes known as autism spectrum disorders. The spectrum ranges

from someone with severe disability and cognitive impairment to the

socially awkward eccentric with Asperger's syndrome.

After I explain the scientist's doubts, Baggs grunts, and her mouth

forms just a hint of a smirk as she lets loose a salvo on the

keyboard. No one helped her shoot the video, edit it, and upload it

to YouTube. She used a Sony Cybershot DSC-T1, a digital camera that

can record up to 90 seconds of video (she has since upgraded). She

then patched the footage together using the editing programs RAD

Video Tools, VirtualDub, and DivXLand Media Subtitler. " My care

provider wouldn't even know how to work the software, " she says.

Baggs is part of an increasingly visible and highly networked

community of autistics. Over the past decade, this group has

benefited enormously from the Internet as well as innovations like

type-to-speech software. Baggs may never have considered herself

trapped in her own world, but thanks to technology, she can

communicate with the same speed and specificity as someone using

spoken language.

Autistics like Baggs are now leading a nascent civil rights

movement. " I remember in '99, " she says, " seeing a number of gay

pride Web sites. I envied how many there were and wished there was

something like that for autism. Now there is. " The message: We're

here. We're weird. Get used to it.

This movement is being fueled by a small but growing cadre of

neuropsychological researchers who are taking a fresh look at the

nature of autism itself. The condition, they say, shouldn't be

thought of as a disease to be eradicated. It may be that the autistic

brain is not defective but simply different — an example of the

variety of human development. These researchers assert that the focus

on finding a cure for autism — the disease model — has kept science

from asking fundamental questions about how autistic brains function.

A cornerstone of this new approach — call it the difference model —

is that past research about autistic intelligence is flawed, perhaps

catastrophically so, because the instruments used to measure

intelligence are bogus. " If Baggs had walked into my clinic

five years ago, " says Massachusetts General Hospital neuroscientist

Zeffiro, one of the leading proponents of the difference

model, " I would have said she was a low-functioning autistic with

significant cognitive impairment. And I would have been totally

wrong. "

Seventy years ago, a Baltimore psychiatrist named Leo Kanner began

recording observations about children in his clinic who

exhibited " fascinating peculiarities. " Just as Kanner's landmark

paper was about to be published, a pediatrician in Vienna named Hans

Asperger was putting the finishing touches on a report about a

similar patient population. Both men, independently, used the same

word to describe and define the condition: autist, or autism, from

the Greek autos, meaning self.

The children had very real deficits, especially when it came to

the " failure to be integrated in a social group " (Asperger) or the

inborn inability to form " affective contact " with other people

(Kanner). The two doctors' other observations about language

impairment, repetitive behaviors, and the desire for sameness still

form much of the basis of autism diagnoses in the 21st century.

On the matter of autistic intelligence, Kanner spoke of an array of

mental skills, " islets of ability " — vocabulary, memory, and problem-

solving that " bespeak good intelligence. " Asperger, too, was struck

by " a particular originality of thought and experience. " Yet over the

years, those islets attracted scientific interest only when they were

amazing — savant-level capabilities in areas such as music,

mathematics, and drawing. For the millions of people with autism who

weren't savants, the general view was that their condition was

tragic, their brainpower lacking.

The test typically used to substantiate this view relies heavily on

language, social interaction, and cultural knowledge — areas that

autistic people, by definition, find difficult. About six years ago,

Meredyth Goldberg Edelson, a professor of psychology at Willamette

University in Oregon, reviewed 215 articles published over the past

71 years, all making or referring to this link between autism and

mental retardation. She found that most of the papers (74 percent)

lacked their own research data to back up the assumption. Thirty-nine

percent of the articles weren't based on any data, and even the more

rigorous studies often used questionable measures of

intelligence. " Are the majority of autistics mentally retarded? "

Goldberg Edelson asks. " Personally, I don't think they are, but we

don't have the data to answer that. "

Mike Merzenich, a professor of neuroscience at UC San Francisco, says

the notion that 75 percent of autistic people are mentally retarded

is " incredibly wrong and destructive. " He has worked with a number of

autistic children, many of whom are nonverbal and would have been

plunked into the low-functioning category. " We label them as retarded

because they can't express what they know, " and then, as they grow

older, we accept that they " can't do much beyond sit in the back of a

warehouse somewhere and stuff letters in envelopes. "

The irony is that this dearth of data persists even as autism

receives an avalanche of attention. Organizations such as Autism

Speaks advocate for research and resources. Celebrity parents like

Toni Braxton, Ed Asner, and McCarthy get high-profile coverage

on talk shows and TV news magazines. Newsweeklies raise fears of an

autism epidemic. But is there an epidemic? There's certainly the

perception of one. According to the Centers for Disease Control, one

out of every 150 8-year-old children (in the areas of the US most

recently studied) has an autism spectrum disorder, a prevalence much

higher than in decades past, when the rate was thought to be in the

range of four or five cases per 10,000 children. But no one knows

whether this apparent explosion of cases is due to an actual rise in

autism, changing diagnostic criteria, inconsistent survey techniques,

or some combination of the three.

In his original paper in 1943, Kanner wrote that while many of the

children he examined " were at one time or another looked upon as

feebleminded, they are all unquestionably endowed with good cognitive

potentialities. " Sixty-five years later, though, little is known

about those potentialities. As one researcher told me, " There's no

money in the field for looking at differences " in the autistic

brain. " But if you talk about trying to fix a problem — then the

funding comes. "

On the outskirts of Montreal sits a brick monolith, the Hôpital

Rivière-des-Prairies. Once one of Canada's most notorious asylums, it

now has a small number of resident psychiatric patients, but most of

the space has been converted into clinics and research facilities.

One of the leading researchers here is t Mottron, 55, a

psychiatrist specializing in autism. Mottron, who grew up in postwar

France, had a tough childhood. His family had a history of

schizophrenia and Tourette syndrome, and he probably has what today

would be diagnosed as attention deficit and hyperactivity disorder.

Naturally, he went into psychiatry. By the early '80s, Mottron was

doing clinical work at a school in Tours that catered to children

with sensory impairment, including autism. " The view then, " Mottron

says, " was that these children could be reeled back to normalcy with

play therapy and work on the parents' relationships " — a gentle way

of saying that the parents, especially the mother, were to blame.

(The theory that emotionally distant " refrigerator mothers " caused

autism had by then been rejected in the US, but in France and many

other countries, the view lingered.)

After only a few weeks on the job, Mottron decided the theories were

crap. " These children were just of another kind, " he says. " You

couldn't turn someone autistic or make someone not autistic. It was

hardwired. " In 1986, Mottron began working with an autistic man who

would later become known in the scientific literature as " E.C. " A

draftsman who specialized in mechanical drawings, E.C. had incredible

savant skills in 3-D drawing. He could rotate objects in his mind and

make technical drawings without the need for a single revision. After

two years of working with E.C., Mottron made his second breakthrough —

not about autistics this time but about the rest of us: People with

standard-issue brains — so-called neurotypicals — don't have the

perceptual abilities to do what E.C. could do. " It's just

inconsistent with how our brains work, " Mottron says.

From that day forward, he decided to challenge the disease model

underlying most autism research. " I wanted to go as far as I could to

show that their perception — their brains — are totally different. "

Not damaged. Not dysfunctional. Just different.

By the mid-1990s, Mottron was a faculty member at the University of

Montreal, where he began publishing papers on " atypicalities of

perception " in autistic subjects. When performing certain mental

tasks — especially when tapping visual, spatial, and auditory

functions — autistics have shown superior performance compared with

neurotypicals. Call it the upside of autism. Dozens of studies —

Mottron's and others — have demonstrated that people with autism

spectrum disorder have a number of strengths: a higher prevalence of

perfect pitch, enhanced ability with 3-D drawing and pattern

recognition, more accurate graphic recall, and various superior

memory skills.

Yet most scientists who come across these skills classify them

as " anomalous peaks of ability, " set them aside, and return to the

questions that drive most research: What's wrong with the autistic

brain? Can we find the genes responsible so that we can someday cure

it? Is there a unifying theory of autism? With severe autistics,

cognitive strengths are even more apt to be overlooked because these

individuals have such obvious deficits and are so hard to test.

People like Baggs don't speak, others may run out of the room, and

still others might not be able to hold a pencil. And besides, if 75

percent of them are mentally retarded, well, why bother?

Mottron draws a parallel with homosexuality. Until 1974, psychiatry's

bible, the Diagnostic and Statistical Manual of Mental Disorders,

described being gay as a mental illness. Someday, Mottron says, we'll

look back on today's ideas about autism with the same sense of shame

that we now feel when talking about psychology's pre-1974 views on

sexuality. " We want to break the idea that autism should definitely

be suppressed, " he says.

Dawson doesn't drive or cook. Public transit overwhelms her,

and face-to-face interaction is an ordeal. She was employed as a

postal worker in 1998 when she " came out of the closet " with her

diagnosis of autism, which she received in the early '90s. After

that, she claims, Canada Post harassed her to such a degree that she

was forced to take a permanent leave of absence, starting in 2002.

(Canada Post says Dawson was treated fairly.) To fight back, she went

on an information-devouring rampage. " There's such a variety of human

behavior. Why is my kind wrong? " she asks. She eventually began

scouring the libraries of McGill University in Montreal to delve into

the autism literature. She searched out journal articles using the

online catalog and sat on the floor reading studies among the stacks.

Dawson, like Baggs, has become a reluctant spokesperson for this new

view of autism. Both are prolific bloggers and correspond constantly

with scientists, parents' groups, medical institutions, the courts,

journalists, and anyone else who'll listen to their stories of how

autistics are mistreated. Baggs has been using YouTube to make her

point; Dawson's weapon is science.

In 2001, Dawson contacted Mottron, figuring that his clinic might

help improve the quality of her life. Mottron tried to give her some

advice on navigating the neurotypical world, but his tips on how to

handle banking, shopping, and buses didn't help. After meeting with

her a few times, Mottron began to suspect that what Dawson really

needed was a sense of purpose. In 2003, he handed her one of his in-

progress journal articles and asked her to copy-edit the grammar. So

Dawson started reading. " I criticized his science almost

immediately, " she says.

Encouraged by Dawson's interest, Mottron sent her other papers. She

responded with written critiques of his work. Then one day in early

2003, she called with a question. " I asked: How did they control for

attention in that fMRI face study?' That caught his attention. "

Dawson had flagged an error that Mottron says most postdocs would

have missed. He was impressed, and over the next few months he sought

Dawson's input on other technical questions. Eventually, he invited

her to collaborate with his research group, despite the fact that her

only academic credential was a high school diploma.

Dawson has an incredible memory, but she's not a savant. What makes

her unique, Mottron says, is her gift for scientific analysis — the

way she can sniff through methodologies and statistical manipulation,

hunting down tiny errors and weak links in logic.

Last summer, the peer-reviewed journal Psychological Science

published a study titled " The Level and Nature of Autistic

Intelligence. " The lead author was Dawson. The paper argues

that autistic smarts have been underestimated because the tools for

assessing intelligence depend on techniques ill-suited to autistics.

The researchers administered two different intelligence tests to 51

children and adults diagnosed with autism and to 43 non-autistic

children and adults.

The first test, known as the Wechsler Intelligence Scale, has helped

solidify the notion of peaks of ability amid otherwise pervasive

mental retardation among autistics. The other test is Raven's

Progressive Matrices, which requires neither a race against the clock

nor a proctor breathing down your neck. The Raven is considered as

reliable as the Wechsler, but the Wechsler is far more commonly used.

Perhaps that's because it requires less effort for the average test

taker. Raven measures abstract reasoning — " effortful " operations

like spotting patterns or solving geometric puzzles. In contrast,

much of the Wechsler assesses crystallized skills like acquired

vocabulary, making correct change, or knowing that milk goes in the

fridge and cereal in the cupboard — learned information that most

people intuit or recall almost automatically.

What the researchers found was that while non-autistic subjects

scored just about the same — a little above average — on both tests,

the autistic group scored much better on the Raven. Two individuals'

scores swung from the mentally retarded range to the 94th percentile.

More significantly, the subset of autistic children in the study

scored roughly 30 percentile points higher on the Raven than they did

on the more language-dependent Wechsler, pulling all but a couple of

them out of the range for mental retardation.

A number of scientists shrugged off the results — of course autistics

would do better on nonverbal tests. But Dawson and her coauthors saw

something more. The " peaks of ability " on the Wechsler correlated

strongly with the average scores on the Raven. The finding suggests

the Wechsler scores give only a glimpse of the autistics'

intelligence, whereas the Raven — the gold standard of fluid

intelligence testing — reveals the true, or at least truer, level of

general intelligence.

Yet to a remarkable degree, scientists conducting cognitive

evaluations continue to use tests which presume that people who can't

communicate the answer don't know the answer. The question is: Why?

Greg , an assistant professor of psychiatry at University of

Texas Southwestern Medical Center, says that although most

researchers know the Wechsler doesn't provide a good assessment of

people with autism, there's pressure to use the test anyway. " Say

you're submitting a grant to study autistic people by comparing them

to a control group, " he says. " The first question that comes up is:

Did you control for IQ? Matching people on IQ is meant to clean up

the methodology, but I think it can also end up damaging the study. "

And that hurts autistic people, Dawson says. She makes a comparison

with blindness. Of course blind people have a disability and need

special accommodation. But you wouldn't give a blind person a test

heavily dependent on vision and interpret their poor score as an

accurate measure of intelligence. Mottron is unequivocal: Because of

recent research, especially the Raven paper, it's clearer than ever

that so-called low-functioning people like Baggs are more

intelligent than once presumed.The Dawson paper was hardly

conclusive, but it generated buzz among scientists and the media.

Mottron's team is now collaborating with Massachusetts General

Hospital's Zeffiro, a neuroimaging expert, to dig deeper. Zeffiro and

company are looking for variable types of mental processing without

asking, what's wrong with this brain? Their first study compares fMRI

results from autistic and control subjects whose brains were imaged

while they performed the Raven test. The group is currently crunching

numbers for publication, and the study looks both perplexing and

promising.

Surprisingly, they didn't find any variability in which parts of the

brain lit up when subjects performed the tasks. " We thought we'd see

different patterns of activation, " Zeffiro says, " but it looks like

the similarities outweigh the dissimilarities. " When they examined

participants' Raven scores together with response times, however,

they noticed something odd. The two groups had the same error rates,

but as an aggregate, the autistics completed the tasks 40 percent

faster than the non-autistics. " They spent less time coming up with

the same number of right answers. The only explanation we can see

right now, " Zeffiro says, is that autistic brains working on this set

of tasks " seem to be engaged at a higher level of efficiency. " That

may have to do with greater connectivity within an area or areas of

the brain. He and other researchers are already exploring this

hypothesis using diffusion tensor imaging, which measures the density

of brain wiring.

But critics of the difference model reject the whole idea that autism

is merely another example of neuro-diversity. After all, being able

to plan your meals for the week or ask for directions bespeak

important forms of intelligence. " If you pretend the areas that are

troubled aren't there, you miss important aspects of the person, "

says Fred Volkmar, director of Yale's Child Study Center.

In the vast majority of journal articles, autism is referred to as a

disorder, and the majority of neuro-psychiatric experts will tell you

that the description fits — something is wrong with the autistic

brain. UCSF's Merzenich, who agrees that conventional intelligence-

testing tools are misleading, still doesn't think the difference

model makes sense. Many autistics are probably smarter than we think,

he says. But there's little question that more severe autism is

characterized by what Merzenich terms " grossly abnormal " brain

development that can lead to a " catastrophic end state. " Denying this

reality, he says, is misguided. Yale's Volkmar likens it to telling a

physically disabled person: " You don't need a wheelchair. Walk! "

Meanwhile parents, educators, and autism advocates worry that

focusing on the latent abilities and intelligence of autistic people

may eventually lead to cuts in funding both for research into a cure

and services provided by government. As one mother of an autistic boy

told me, " There's no question that my son needs treatment and a cure. "

Back in Burlington, Baggs is cueing up another YouTube clip. She

angles her computer screen so I can see it. Set to the soundtrack of

Queen's " Under Pressure, " it's a montage of close-up videos showing

behaviors like pen clicking, thumb twiddling, and finger tapping. The

message: Why are some stress-related behaviors socially permissible,

while others — like the rocking bodies and flapping arms commonly

associated with autism — are not? Hit count for the video at last

check: 80,000 and climbing.

Should autism be treated? Yes, says Baggs, it should be treated with

respect. " People aren't interested in us functioning with the brains

we have, " she says, because autism is considered to be outside the

range of normal variability. " I don't fit the stereotype of autism.

But who does? " she asks, hammering especially hard on the

keyboard. " The definition of autism is so fluid and changing every

few years. " What's exciting, she says, is that Mottron and other

scientists have " found universal strengths where others usually look

for universal deficits. " Neuro-cognitive science, she says, is

finally catching up to what she and many other adults with autism

have been saying all along.

Baggs is working on some new videos. One project is tentatively

titled " Am I a Person Yet? " She'll explore communication, empathy,

self-reflection — core elements of the human experience that have at

times been used to define personhood itself. And at various points

during the clip, she'll ask: " Am I a person yet? " It's a provocative

idea, and you might find yourself thinking: She has a point.

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response drill in issue 16.02