By Heather O. Milke
It looks like an epidemic.
A February study released by the Centers for Disease Control and Prevention reports that as many as 1 in 150 children may have some form of autism. The number is at least 500 percent greater than in previous years.
Unstrange Minds is being published in a handful of other countries in the coming year, including the Netherlands, Korea, Japan, and the United Kingdom. It is also being published in paperback in the United States in February.
Parents, politicians, and even celebrities are calling for action, demanding to know why the developmental disorder, characterized by impaired social interaction, communication problems, and unusual, repetitive, or limited activities and interests, has increased at such an alarming rate.
Is it thimerosal, a mercury-based vaccine additive given to children for years? Is it our drinking water? Is it artificial sweetener? Recent scientific theories suggest a genetic cause, but no one seems to have ruled out the influence of environmental factors.
In his book, Unstrange Minds: Remapping the World of Autism (Basic Books, 2007), GW Anthropology Professor Roy Richard Grinker provides a historical and cultural perspective on the phenomenon, dismissing that an epidemic is afoot. He says the staggering numbers are a result of psychologists and physicians finally correctly diagnosing the disorder in children. Autism, he says, has been here since the beginning of time.
“The rise in prevalence rates in autism didn’t occur because there were any new major discoveries or experiments that proved something new,” he says. “The rise in the prevalence of autism and the changes in diagnostic criteria came about from increased scrutiny of children and the rise in the study of child mental health. Child psychiatry was this tiny field back in the 1970s and now it is a really big, active field. There are 10 times the number of child psychiatrists today than there were 25, 30 years ago. And that’s just psychiatrists. That doesn’t even include speech pathologists and so on,” he says.
Grinker has spent years studying the changes that have led to today’s autism statistics and notes the noticeable transformation in the epidemiologic methods and diagnostic criteria used, the growth of child psychiatry, and an increased societal awareness of autism and its characteristics.
“My opinion is that there are so many clear-cut reasons for the changes in the prevalence of autism in the past 50 years that it doesn’t make sense to look for some kind of bizarre, elaborate explanation,” he says.
Grinker, of course, has opponents, particularly from parent advocacy groups looking to place blame on something tangible, like thimerosal.
“To some people it’s like I’m a Holocaust denier, and they have used that phrase in some of the negative mail I’ve received,” says Grinker, who at one point had to involve campus police regarding his safety.
Critics say his research, which assumes the disorder is largely genetic, begs questions, such as where are all the autistic adults in society? Grinker says they are among us, living and working beside us. In the past, he adds, they have been mislabeled—perhaps called schizophrenic or mentally retarded—or otherwise not recognized as autistic.
The autism research has been a natural fit for Grinker. As an anthropologist, he is accustomed to studying human beings in relation to physical character, environmental and social relations, and culture. Psychiatry is not an unfamiliar science to Grinker, either. His father is a practicing psychiatrist, and his grandfather, a founding editor of the Archives of General Psychiatry, established the psychiatry department at the University of Chicago. His great grandfather practiced psychoanalysis in 1911 before moving into neurology. Grinker even married a psychiatrist.
Most compelling, though, is how Grinker spends his time outside of work. He is the father of 15-year-old Isabel, who was diagnosed with autism in 1994.
Thirteen years ago, when Grinker first learned that his daughter was autistic, life was incredibly different for parents of children with autism. As was common at that time, Grinker and his wife, Joyce, went to see a prominent child psychiatrist. The doctor never asked about Isabel. Instead, he grilled Joyce about her parenting skills, her pregnancy, and the time that her career requires outside of the home.
Because autism often first shows itself through a decline in sociability around age 2, the disorder historically has been blamed on poor mothering. Such blame is still happening today in other countries, some of which don’t yet have a formal name for the disorder.
In the United States today, however, many people are learning to recognize early clues of autism: A child who may have seemed normal until his first birthday begins what seems to be a decline in development that is often noticed during the second or third year of life. First signs include decreased speech (or never talking to begin with) and diminished eye contact. The older the child gets, the more the pronounced differences become between him and his peers. While there seem to be no racial differences, autism exists in boys four times more than in girls.
These descriptions are now familiar to many Americans. Grinker notes how the level of awareness of autism in the United States has gone from basically nothing to the point where the word is practically a household name. With the help of some celebrities along with hordes of information available on the Internet, everybody seems to know a little bit about autism. The subject even made the top 10 list of Google news searches in 2006.
“People want to know something about autism,” Grinker says. “What they want to know is: Is it an epidemic? And one of the ways that anthropology can be relevant is to explain how people come up with classifications and give meaning to things that have existed before but were called different names. And we know that autism today is not the same concept as autism 50 years ago or 20 years ago or even five years ago.”
Hence, Grinker says, autism is no longer strange. It is “unstrange.”
Austrian-born psychiatrist Leo Kanner is known as the first psychiatrist to describe autism. He conducted much of his work in Washington’s backyard at Johns Hopkins University. His famous 1943 paper, “Autistic Disturbances of Affective Contact,” described a condition called “infantile autism” in 11 children. The word autism had been used before, but had been used, as Grinker says, to describe a “symptom” rather than a “syndrome.” Deriving from the Greek autos, meaning “self,” the term was used to describe the behavior of some people who were disengaged from everything except their internal world.
In his 1943 paper, Kanner argued that his 11 patients were different than people with schizophrenia, the diagnosis that many children with autism historically have been given. All 11 of the children he described had difficulties relating to other people. To Kanner, this trait was a determining feature of autism. Most of the children also had speech delays or unusual language—they repeated words, used incorrect pronouns, had amazing rote memories, and maintained an obsession with sameness and repetition. Still, until 1980, autism was considered a form of childhood schizophrenia.
During the same time, another Austrian, Hans Asperger, from which the term Asperger’s syndrome (an autism spectrum disorder) is derived, also studied children and wrote about what he called “autistic psychopathy in childhood.” Asperger was convinced that autism was a result of a complex interplay between biological (genetic) and environmental factors, a theory still hypothesized today, Grinker writes.
These early pioneers were the first to describe the characteristics of autistic individuals. However, it was British autism expert Lorna Wing whose work in 1981 demonstrated that autism is really a range, or a “spectrum,” of disorders. Today that means a parent may describe her child as being “on the spectrum.” And that could mean the child may have full blown autism, the sometimes milder Asperger’s syndrome (a condition first recognized by the American Psychiatric Association in 1994), the very broad pervasive developmental disorder-not otherwise specified (PDD-NOS), or even something else.
With the availability of information on autism and the knowledge of it rising earlier this decade, Grinker wanted to use his anthropological research skills to show how this shift occurred in our society. “One of the things about anthropology is that it shows how cultural changes can affect trends rather than the other way around,” he says. “And so sometimes major changes in how we think about ourselves, our bodies, or our minds, can have a big impact on science.”
Until recently, most children with autism received a diagnosis of mental retardation or schizophrenia and were kept hidden at home or locked away in institutions. “In most states, mental retardation diagnoses decreased to the same degree that autism diagnoses increased,” Grinker notes.
What caused the change? Grinker writes at length about the importance of the American Psychiatric Association’s bible of diagnosis, the Diagnostic and Statistical Manual of Mental Disorders, and how versions prior to 1980 fail to classify autism as anything other than childhood psychosis. “Autism was first defined and described in the United States in the 1940s, but it took nearly 40 more years for the American Psychiatric Association to officially name and classify it in its bible of diagnosis,” he writes.
In France, it took another 24 years on top of that. It wasn’t until November 2004 that the French separated autism as a developmental disorder instead of calling it a kind of schizophrenia. “And it did so only because parents demanded it,” Grinker writes, “not because the French psychiatrists had
actually learned anything new,” he adds. “Science didn’t change our culture, as much as culture changed our science.”
Bennett Leventhal, a prominent psychiatric expert in autism and related disorders at the University of Illinois Medical Center who works with Grinker on autism research in Korea, says Grinker’s book points to some distinctions that previously have not been noted.
One of them, he says, is that it’s important to note that much of the research is new.
“Even in the 1970s when I was in training, there was a notion that autistic symptoms were a normal part of development,” he says.
Leventhal refers to a book written by a psychiatrist in the 1970s that suggested children had a normal autistic phase of development and it was the parents’ responsibility to nurture children out of this phase.
“There is no normal autistic phase of development, but 40 years ago, people thought there was,” he says.
In Unstrange Minds, Grinker shares stories gathered from his research of how parents around the world have handled care of and treatment for their autistic children.
A young mother from the foothills of the Himalayas who was convinced her son had autism left her other family members, despite their protest, and took a seven-hour train ride with her son to New Delhi to seek a treatment plan for him. She was determined to learn how to help him and interact with him, even though such a move seemed outrageous in her mountain community.
In a village in South Africa, a couple wanted to help their 6-year-old son who had stopped talking, avoided eye contact, didn’t respond to his name, and made strange movements with his hands. Fearing what their local nyanga, or witch doctor, would do, they stayed away from him until pressured to see him by one of their own parents. They were shocked when the doctor gave him a diagnosis of autism, something no one thought they would hear from the nyanga.
Grinker writes that the South African couple “now knows a lot about autism.” The mother even told Grinker that in South Africa, 1 in 166 children has autism.
He writes, “She couldn’t tell me where the figure came from—I knew there hadn’t been an epidemiological study conducted anywhere in Africa—but she promised to find out. When I saw her in the parking lot of [her son’s] school the next day, she called out to me, ‘It’s from Brick Township, New Jersey!’ ”
There’s no doubt that parents with autistic children now have a plethora of information, particularly in the United States. They can search the Internet to find a variety of Web sites dedicated to the topic. They can find free testing and evaluation services in their public school systems. They can even communicate in formal groups designed to bring together families of children with autism.
The plentiful information is a blessing and a curse to evolving culture and science, Grinker suggests, because inaccuracies are widespread.
Andy Shih, research director at the national advocacy organization Autism Speaks, is tasked with finding ways to use science to back up the many claims of causes for autism spectrum disorders that exist. “I have 35 hypotheses sitting on my desk, and these are just the ones that turn up. They range from caffeine, to sperm in eggs, to Teflon, to Prozac, to too much TV. There’s no shortage of environmental influences,” he says.
Shih notes that “genetics is a much more finite universe,” making it easier to research. “Environmental factors could be literally millions of things,” he says.
Shih admits the response to Grinker’s book among his community is not unanimously positive. “The way the book was received reflects the existing division within the community, particularly about the prevalency issue and the potential involvement of environmental factors in autism,” he says.
“Our position is that it’s an important contribution to the literature,” he adds. “What is very important about his book is that it really articulates very well some of the ideas that have been percolating but have not been fully explored at this point,” Shih says. “You have to wonder: What is the role of culture and social norms? What role do they have in terms of evaluating diagnosis and maybe even treatment?”
Research Grinker conducted in South Korea for his book was funded in part by a grant from Autism Speaks. Shih notes that his organization is developing an international autism epidemiological network “to bring people together to talk about best practices and changes,” he says. “The culture issue has become a significant consideration in the way we plan the science at this point.”
And he notes that there is a lot of information being written about autism, some useful, some not so useful. He referred to a study published in Nature, in which a team from Stanford University looked at the coverage of autism in popular media versus what was being discussed in the scientific community. They found a huge disconnect. “What’s important to scientists,” he adds, “is almost completely irrelevant to the media.”
Grinker is continuing his international work on autism through additional research grants that are enabling him to return to Korea to conduct the first incidence studies in the country. He and researchers in Korea will be publishing the results of Korea’s first prevalence study by the end of the year. “The outcome of the study will have profound influences on the Korean autism community both in terms of awareness and hopefully in terms of serving as one of the foundations for the community to begin a dialogue with policy makers about how to care for families touched by autism,” Shih says. Korea is a country that is still learning the full extent of autism among its people.
Unstrange Minds also will be published in a handful of other countries in the coming year, including the Netherlands, Korea, Japan, and the United Kingdom.
Grinker says his daughter, Isabel, has made remarkable progress over the years. “I never imagined Isabel would be where she is today back then, when she was 5, 6 years old,” he says. But progress has not come without intense struggle—with the local school systems (which, for the Grinker family is Montgomery County, Md., which he discusses in his book), and with finding and seeking newer and better treatments. After years of effort, Isabel is firmly associated with a public high school in her area, where her classes include a combination of special education classes and mainstream classrooms.
Grinker admits that every year that passes brings its own set of challenges. “The difference between say Isabel at age 4 and a typical kid at age 4 isn’t huge. But that difference got greater. By the time kids are in, say, fifth grade and are so social there’s a bigger difference,” he says. “So if you compare Isabel to her unimpaired peers, for lack of a better term, it can be demoralizing. But what we always have to do is compare Isabel to Isabel, and then we are actually really satisfied with how much progress she has made.”
In his book, Grinker also writes of a special seminar course he taught at GW in the spring semester of 2006 on autism. He opened the class by asking the students to say why they took the class. He writes, “One student said ‘I took the class because I have autism.’ ”
“The student said he had been diagnosed with Asperger’s disorder in his junior year in high school only after receiving numerous other diagnoses over the years.
“I was taken aback, but I used the opportunity to ask the students to talk about what kinds of cultural changes have taken place in the U.S. to make it possible for a student at a major university to tell his peers that he has autism or for that matter, any behavioral disorder. The students were quiet at first. They were taken aback, too, but less by the man’s statement than by my question. They didn’t know that in earlier times children with autism were needlessly confined to institutions, demeaned as social misfits, and never integrated into community life let alone educated.”
“I can’t think of a better example of how far we have come than the 19 freshmen in my university who took for granted that an adult with autism is part of their world,” he writes.
And for Grinker, that’s what gives meaning to his research and writings. That behind the science, and all the talk and terms, there are people, many people, one of whom is Isabel.