Research Uncovers Raised Rate of Autism

 

The figure, 2.6 percent of all children aged 7 to 12 in the Ilsan district of the city of Goyang, is more than twice the rate usually reported in the developed world. Even that rate, about 1 percent, has been climbing rapidly in recent years — from 0.6 percent in the United States in 2007, for example.

But experts said the findings did not mean that the actual numbers of children with autism were rising, simply that the study was more comprehensive than previous ones.

“This is a very impressive study,” said Lisa Croen, director of the autism research program at Kaiser-Permanente Northern California, who was not connected with the new report. “They did a careful job and in a part of the world where autism has not been well documented in the past.”

For the study, which is being published in The American Journal of Psychiatry, researchers from the Yale Child Study Center, George Washington University and other leading institutions sought to screen every child aged 7 to 12 in Ilsan, a community of 488,590, about the size of Staten Island.

By contrast, the Centers for Disease Control and Prevention in the United States and most other research groups measure autism prevalence by examining and verifying records of existing cases kept by health care and special education agencies. That approach may leave out many children whose parents and schools have never sought a diagnosis.

In recent years scientists have come to see autism as a spectrum of disorders that can include profound social disconnection and mental retardation, but also milder forms, like Asperger’s syndrome, that are pervasive and potentially disabling but that often go undiagnosed.

“From the get-go we had the feeling that we would find a higher prevalence than other studies because we were looking at an understudied population: children in regular schools,” said the lead researcher, Dr. Young-Shin Kim, a child psychiatrist and epidemiologist at the Yale Child Study Center.

South Korea was chosen not only because autism prevalence had not been measured there, but also because its national health care system, universal education and homogeneous population made it a promising region for a planned series of studies that will also look at genetic and environmental factors in autism.

The study, which was largely financed by the research and advocacy group Autism Speaks, raises the question of whether a similarly high prevalence would be found in the United States if all children were screened.

Dr. Marshalyn Yeargin-Allsopp, chief of developmental disabilities at the National Center on Birth Defects and Developmental Disabilities of the C.D.C., acknowledged that her agency’s records-based approach probably missed some autistic children — especially among the poor, among racial minorities and “potentially among girls” — and said the agency was interested in taking part in a population-based approach like the Korean study.

“We believe this will be a way to get as complete an estimate of A.S.D. prevalence as possible,” she said in an e-mail, using the abbreviation for autism spectrum disorder.

Most cases of autism spectrum disorder in the Korean study, the researchers said, turned up among children in regular schools who had no record of receiving special education or mental health services. A third were found among a “high-probability group” of 294 children who were attending special-education schools or were listed on a registry of disabled children.

The children in that high-probability group were similar in many ways to children with autism in the United States and elsewhere. Fifty-nine percent were intellectually disabled, or mentally retarded; more than two-thirds had full-blown autism, as opposed to milder forms like Asperger’s; and boys outnumbered girls five to one.

Among the children with autism spectrum disorder in regular schools, only 16 percent were intellectually disabled, more than two-thirds had a milder form of autism, and the ratio of boys to girls was unusually low: 2.5 to 1.

In addition, 12 percent of these children had a superior I.Q. — a higher proportion than found in the general population.

Researchers used a two-step process to identify autism among ordinary schoolchildren: parents and teachers completed a 27-item questionnaire on each child, and children who scored in the autistic range on that questionnaire were individually evaluated.

“If we had only looked at the high-probability group, we would have come up with about 0.7 percent, which is in line with C.D.C. statistics for the U.S.,” said the study’s senior author, Roy Richard Grinker, a professor of anthropology and international affairs at George Washington University.

The surprisingly large proportion of cases uncovered in ordinary schools, he noted, may in part reflect the low level of awareness and high degree of stigma attached to autism in South Korea. In addition, children with autism spectrum disorders may stand out less in South Korean schools, which follow highly structured and predictable routines and emphasize rote learning.

Other experts said that more “population based” studies, though costly, could help determine how broadly the Korean findings could be generalized to other societies.

Craig J. Newschaffer, chairman of epidemiology and biostatistics at the Drexel School of Public Health in Philadelphia, praised the new report, calling it “quite a strong study,” but he added that the results were based on information about 63 percent of the schoolchildren, a good response rate but not ideal.

“It is just one area of Korea,” he said, “and we know that there’s random variation in how diseases are distributed.”

 

Research Uncovers Raised Rate of Autism

The figure, 2.6 percent of all children aged 7 to 12 in the Ilsan district of the city of Goyang, is more than twice the rate usually reported in the developed world. Even that rate, about 1 percent, has been climbing rapidly in recent years — from 0.6 percent in the United States in 2007, for example.

But experts said the findings did not mean that the actual numbers of children with autism were rising, simply that the study was more comprehensive than previous ones.

“This is a very impressive study,” said Lisa Croen, director of the autism research program at Kaiser-Permanente Northern California, who was not connected with the new report. “They did a careful job and in a part of the world where autism has not been well documented in the past.”

For the study, which is being published in The American Journal of Psychiatry, researchers from the Yale Child Study Center, George Washington University and other leading institutions sought to screen every child aged 7 to 12 in Ilsan, a community of 488,590, about the size of Staten Island.

By contrast, the Centers for Disease Control and Prevention in the United States and most other research groups measure autism prevalence by examining and verifying records of existing cases kept by health care and special education agencies. That approach may leave out many children whose parents and schools have never sought a diagnosis.

In recent years scientists have come to see autism as a spectrum of disorders that can include profound social disconnection and mental retardation, but also milder forms, like Asperger’s syndrome, that are pervasive and potentially disabling but that often go undiagnosed.

“From the get-go we had the feeling that we would find a higher prevalence than other studies because we were looking at an understudied population: children in regular schools,” said the lead researcher, Dr. Young-Shin Kim, a child psychiatrist and epidemiologist at the Yale Child Study Center.

South Korea was chosen not only because autism prevalence had not been measured there, but also because its national health care system, universal education and homogeneous population made it a promising region for a planned series of studies that will also look at genetic and environmental factors in autism.

The study, which was largely financed by the research and advocacy group Autism Speaks, raises the question of whether a similarly high prevalence would be found in the United States if all children were screened.

Dr. Marshalyn Yeargin-Allsopp, chief of developmental disabilities at the National Center on Birth Defects and Developmental Disabilities of the C.D.C., acknowledged that her agency’s records-based approach probably missed some autistic children — especially among the poor, among racial minorities and “potentially among girls” — and said the agency was interested in taking part in a population-based approach like the Korean study.

“We believe this will be a way to get as complete an estimate of A.S.D. prevalence as possible,” she said in an e-mail, using the abbreviation for autism spectrum disorder.

Most cases of autism spectrum disorder in the Korean study, the researchers said, turned up among children in regular schools who had no record of receiving special education or mental health services. A third were found among a “high-probability group” of 294 children who were attending special-education schools or were listed on a registry of disabled children.

The children in that high-probability group were similar in many ways to children with autism in the United States and elsewhere. Fifty-nine percent were intellectually disabled, or mentally retarded; more than two-thirds had full-blown autism, as opposed to milder forms like Asperger’s; and boys outnumbered girls five to one.

Among the children with autism spectrum disorder in regular schools, only 16 percent were intellectually disabled, more than two-thirds had a milder form of autism, and the ratio of boys to girls was unusually low: 2.5 to 1.

In addition, 12 percent of these children had a superior I.Q. — a higher proportion than found in the general population.

Researchers used a two-step process to identify autism among ordinary schoolchildren: parents and teachers completed a 27-item questionnaire on each child, and children who scored in the autistic range on that questionnaire were individually evaluated.

“If we had only looked at the high-probability group, we would have come up with about 0.7 percent, which is in line with C.D.C. statistics for the U.S.,” said the study’s senior author, Roy Richard Grinker, a professor of anthropology and international affairs at George Washington University.

The surprisingly large proportion of cases uncovered in ordinary schools, he noted, may in part reflect the low level of awareness and high degree of stigma attached to autism in South Korea. In addition, children with autism spectrum disorders may stand out less in South Korean schools, which follow highly structured and predictable routines and emphasize rote learning.

Other experts said that more “population based” studies, though costly, could help determine how broadly the Korean findings could be generalized to other societies.

Craig J. Newschaffer, chairman of epidemiology and biostatistics at the Drexel School of Public Health in Philadelphia, praised the new report, calling it “quite a strong study,” but he added that the results were based on information about 63 percent of the schoolchildren, a good response rate but not ideal.

“It is just one area of Korea,” he said, “and we know that there’s random variation in how diseases are distributed.”

 

Research Uncovers Raised Rate of Autism

The figure, 2.6 percent of all children aged 7 to 12 in the Ilsan district of the city of Goyang, is more than twice the rate usually reported in the developed world. Even that rate, about 1 percent, has been climbing rapidly in recent years — from 0.6 percent in the United States in 2007, for example.

But experts said the findings did not mean that the actual numbers of children with autism were rising, simply that the study was more comprehensive than previous ones.

“This is a very impressive study,” said Lisa Croen, director of the autism research program at Kaiser-Permanente Northern California, who was not connected with the new report. “They did a careful job and in a part of the world where autism has not been well documented in the past.”

For the study, which is being published in The American Journal of Psychiatry, researchers from the Yale Child Study Center, George Washington University and other leading institutions sought to screen every child aged 7 to 12 in Ilsan, a community of 488,590, about the size of Staten Island.

By contrast, the Centers for Disease Control and Prevention in the United States and most other research groups measure autism prevalence by examining and verifying records of existing cases kept by health care and special education agencies. That approach may leave out many children whose parents and schools have never sought a diagnosis.

In recent years scientists have come to see autism as a spectrum of disorders that can include profound social disconnection and mental retardation, but also milder forms, like Asperger’s syndrome, that are pervasive and potentially disabling but that often go undiagnosed.

“From the get-go we had the feeling that we would find a higher prevalence than other studies because we were looking at an understudied population: children in regular schools,” said the lead researcher, Dr. Young-Shin Kim, a child psychiatrist and epidemiologist at the Yale Child Study Center.

South Korea was chosen not only because autism prevalence had not been measured there, but also because its national health care system, universal education and homogeneous population made it a promising region for a planned series of studies that will also look at genetic and environmental factors in autism.

The study, which was largely financed by the research and advocacy group Autism Speaks, raises the question of whether a similarly high prevalence would be found in the United States if all children were screened.

Dr. Marshalyn Yeargin-Allsopp, chief of developmental disabilities at the National Center on Birth Defects and Developmental Disabilities of the C.D.C., acknowledged that her agency’s records-based approach probably missed some autistic children — especially among the poor, among racial minorities and “potentially among girls” — and said the agency was interested in taking part in a population-based approach like the Korean study.

“We believe this will be a way to get as complete an estimate of A.S.D. prevalence as possible,” she said in an e-mail, using the abbreviation for autism spectrum disorder.

Most cases of autism spectrum disorder in the Korean study, the researchers said, turned up among children in regular schools who had no record of receiving special education or mental health services. A third were found among a “high-probability group” of 294 children who were attending special-education schools or were listed on a registry of disabled children.

The children in that high-probability group were similar in many ways to children with autism in the United States and elsewhere. Fifty-nine percent were intellectually disabled, or mentally retarded; more than two-thirds had full-blown autism, as opposed to milder forms like Asperger’s; and boys outnumbered girls five to one.

Among the children with autism spectrum disorder in regular schools, only 16 percent were intellectually disabled, more than two-thirds had a milder form of autism, and the ratio of boys to girls was unusually low: 2.5 to 1.

In addition, 12 percent of these children had a superior I.Q. — a higher proportion than found in the general population.

Researchers used a two-step process to identify autism among ordinary schoolchildren: parents and teachers completed a 27-item questionnaire on each child, and children who scored in the autistic range on that questionnaire were individually evaluated.

“If we had only looked at the high-probability group, we would have come up with about 0.7 percent, which is in line with C.D.C. statistics for the U.S.,” said the study’s senior author, Roy Richard Grinker, a professor of anthropology and international affairs at George Washington University.

The surprisingly large proportion of cases uncovered in ordinary schools, he noted, may in part reflect the low level of awareness and high degree of stigma attached to autism in South Korea. In addition, children with autism spectrum disorders may stand out less in South Korean schools, which follow highly structured and predictable routines and emphasize rote learning.

Other experts said that more “population based” studies, though costly, could help determine how broadly the Korean findings could be generalized to other societies.

Craig J. Newschaffer, chairman of epidemiology and biostatistics at the Drexel School of Public Health in Philadelphia, praised the new report, calling it “quite a strong study,” but he added that the results were based on information about 63 percent of the schoolchildren, a good response rate but not ideal.

“It is just one area of Korea,” he said, “and we know that there’s random variation in how diseases are distributed.”

 

Research Uncovers Raised Rate of Autism

The figure, 2.6 percent of all children aged 7 to 12 in the Ilsan district of the city of Goyang, is more than twice the rate usually reported in the developed world. Even that rate, about 1 percent, has been climbing rapidly in recent years — from 0.6 percent in the United States in 2007, for example.

But experts said the findings did not mean that the actual numbers of children with autism were rising, simply that the study was more comprehensive than previous ones.

“This is a very impressive study,” said Lisa Croen, director of the autism research program at Kaiser-Permanente Northern California, who was not connected with the new report. “They did a careful job and in a part of the world where autism has not been well documented in the past.”

For the study, which is being published in The American Journal of Psychiatry, researchers from the Yale Child Study Center, George Washington University and other leading institutions sought to screen every child aged 7 to 12 in Ilsan, a community of 488,590, about the size of Staten Island.

By contrast, the Centers for Disease Control and Prevention in the United States and most other research groups measure autism prevalence by examining and verifying records of existing cases kept by health care and special education agencies. That approach may leave out many children whose parents and schools have never sought a diagnosis.

In recent years scientists have come to see autism as a spectrum of disorders that can include profound social disconnection and mental retardation, but also milder forms, like Asperger’s syndrome, that are pervasive and potentially disabling but that often go undiagnosed.

“From the get-go we had the feeling that we would find a higher prevalence than other studies because we were looking at an understudied population: children in regular schools,” said the lead researcher, Dr. Young-Shin Kim, a child psychiatrist and epidemiologist at the Yale Child Study Center.

South Korea was chosen not only because autism prevalence had not been measured there, but also because its national health care system, universal education and homogeneous population made it a promising region for a planned series of studies that will also look at genetic and environmental factors in autism.

The study, which was largely financed by the research and advocacy group Autism Speaks, raises the question of whether a similarly high prevalence would be found in the United States if all children were screened.

Dr. Marshalyn Yeargin-Allsopp, chief of developmental disabilities at the National Center on Birth Defects and Developmental Disabilities of the C.D.C., acknowledged that her agency’s records-based approach probably missed some autistic children — especially among the poor, among racial minorities and “potentially among girls” — and said the agency was interested in taking part in a population-based approach like the Korean study.

“We believe this will be a way to get as complete an estimate of A.S.D. prevalence as possible,” she said in an e-mail, using the abbreviation for autism spectrum disorder.

Most cases of autism spectrum disorder in the Korean study, the researchers said, turned up among children in regular schools who had no record of receiving special education or mental health services. A third were found among a “high-probability group” of 294 children who were attending special-education schools or were listed on a registry of disabled children.

The children in that high-probability group were similar in many ways to children with autism in the United States and elsewhere. Fifty-nine percent were intellectually disabled, or mentally retarded; more than two-thirds had full-blown autism, as opposed to milder forms like Asperger’s; and boys outnumbered girls five to one.

Among the children with autism spectrum disorder in regular schools, only 16 percent were intellectually disabled, more than two-thirds had a milder form of autism, and the ratio of boys to girls was unusually low: 2.5 to 1.

In addition, 12 percent of these children had a superior I.Q. — a higher proportion than found in the general population.

Researchers used a two-step process to identify autism among ordinary schoolchildren: parents and teachers completed a 27-item questionnaire on each child, and children who scored in the autistic range on that questionnaire were individually evaluated.

“If we had only looked at the high-probability group, we would have come up with about 0.7 percent, which is in line with C.D.C. statistics for the U.S.,” said the study’s senior author, Roy Richard Grinker, a professor of anthropology and international affairs at George Washington University.

The surprisingly large proportion of cases uncovered in ordinary schools, he noted, may in part reflect the low level of awareness and high degree of stigma attached to autism in South Korea. In addition, children with autism spectrum disorders may stand out less in South Korean schools, which follow highly structured and predictable routines and emphasize rote learning.

Other experts said that more “population based” studies, though costly, could help determine how broadly the Korean findings could be generalized to other societies.

Craig J. Newschaffer, chairman of epidemiology and biostatistics at the Drexel School of Public Health in Philadelphia, praised the new report, calling it “quite a strong study,” but he added that the results were based on information about 63 percent of the schoolchildren, a good response rate but not ideal.

“It is just one area of Korea,” he said, “and we know that there’s random variation in how diseases are distributed.”

 

Autism Guru Fights for His Reputation and Theory

  CENTER OF CONTROVERSY Andrew Wakefield with his wife, Carmel, in London, after a disciplinary-panel hearing of the General Medical Council in January 2010.

As people streamed into Graceview Baptist Church in Tomball, Tex., early one Saturday morning in January, two armed guards stood prominently just inside the doorway of the sanctuary. Their eyes scanned the room and returned with some frequency to a man sitting near the aisle, whom they had been hired to protect.

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Andrew Wakefield

The man, Andrew Wakefield, dressed in a blazer and jeans and peering through reading glasses, had a mild professorial air. He tapped at a laptop as the room filled with people who came to hear him speak; he looked both industrious and remote. Broad-shouldered and fair at 54, he still has the presence of the person he once was: a conventional winner, the captain of his medical school’s rugby team, the head boy at the private school he attended in England. Wakefield was a high-profile but controversial figure in gastroenterology research at the Royal Free Hospital in London when, in 1998, he upended his career path — and more significant, the best-laid plans of public-health officials — by announcing at a press conference that he had concerns about the safety of the measles-mumps-rubella vaccine (M.M.R.) and its relationship to the onset of autism.

Although Wakefield did not claim to have proved that the M.M.R. vaccine (typically given to children at 12 to 15 months) caused autism, his concerns, not his caveats, ricocheted around the world. His belief, based on a paper he wrote about 12 children, is that the three vaccines, given together, can alter a child’s immune system, allowing the measles virus in the vaccine to infiltrate the intestines; certain proteins, escaping from the intestines, could then reach and harm neurons in the brain. Few theories have drawn so much attention and, in turn, so much refutation: a 2003 paper in The Archives of Pediatrics and Adolescent Medicine, which reviewed a dozen epidemiological studies, concluded that there was no evidence of an association between autism and M.M.R., and studies in peer-reviewed journals since have come to the same conclusion. In Britain, the General Medical Council revoked Wakefield’s medical license after a lengthy hearing, citing numerous ethical violations that tainted his work, like failing to disclose financing from lawyers who were mounting a case against vaccine manufacturers. The Lancet, which published the original Wakefield paper, retracted it. In a series that ran early this year, The British Medical Journal concluded that the research was not just unethically financed but also “fraudulent” (timelines were misrepresented, for example, to suggest direct culpability of the vaccine).

Andrew Wakefield has become one of the most reviled doctors of his generation, blamed directly and indirectly, depending on the accuser, for irresponsibly starting a panic with tragic repercussions: vaccination rates so low that childhood diseases once all but eradicated here — whooping cough and measles, among them — have re-emerged, endangering young lives.

And yet here he was in Texas, post-career-apocalypse, calmly discussing his work, and a crowd of around 250 people showed up to listen. As people walked into the lobby of the church in Tomball, they passed by a whiteboard with a message that asked attendees to express their thoughts to Wakefield. Many complied with lavish thanks: “We stand by you!” and “Thank you for the many sacrifices you have made for the cause!” When he finally took the podium, the audience members, mostly parents of autistic children, stood and applauded wildly.

In his presentation, Wakefield sounded impatient but righteous. He used enough scientific terms — “ataxic,” “histopathological review” and “vaccine excipients” — that those parents who did not feel cowed might have been flattered by his assumption of their scientific fluency. He also tried to defend himself against a few of the charges laid out in The British Medical Journal — offering defenses that did not hold up before the journal’s panel of editors but were perhaps enough to assure an audience of his fans that he did, in fact, have defenses. Some part of Wakefield’s cult status is surely because of his personal charisma, and he spoke with great rhetorical flair. He took off his glasses and put them back on like a gifted actor maximizing a prop. “What happens to me doesn’t matter,” he said at one point. “What happens to these children does matter.”

After the talk, a line of visitors snaked down the length of the lobby, his followers waiting to have Wakefield sign a book he wrote about his experience and convictions, “Callous Disregard.” “All right, love?” he said, handing the book back to one mother. “Of course,” he said when asked for a photo. A pregnant woman in the lobby told me she was there trying to educate herself. Another woman, with tears in her eyes, blamed herself for not working harder to obtain a separate measles vaccine for her possibly autistic child.

Michelle Guppy, the coordinator of the Houston Autism Disability Network and the organizer of the Tomball event, said she believed her own autistic son benefited greatly from one aspect of Wakefield’s work: his conviction that untreated gastrointestinal problems could be behind some of autism’s symptoms. It was Guppy, it turned out, who thought to hire the armed guards “to make the statement,” she said, “that this is neutral ground, and it’s going to be civil.” Guppy, a mother of two who was elegantly dressed for the occasion, made no pretense of neutrality herself. She narrowed her eyes when she learned that a writer from The New York Times was there to write about Wakefield.

“Be nice to him,” she said, “or we will hurt you.”

Susan Dominus (susan.dominus@nytimes.com) is a staff writer for the magazine. Her most recent article was about the young-adult novelist Suzanne Collins. Editor: Lauren Kern (l.kern-MagGroup@nytimes.com).