Blue lights blazed at landmark buildings, bridges, museums and other notable spots in 25 U.S. cities and 15 countries to mark Autism Awareness Day on April 1 and 2, kicking off April as Autism Awareness month. The “Light It Up Blue” event is the project of the research and advocacy group Autism Speaks. Among the landmark locations in the U.S. were: the Empire State Building and the New York Stock Exchange, Fenway Park in Boston, Willis Tower (formerly Sears Tower) in Chicago, the Rock and Roll Hall of Fame in Cleveland, Los Angeles International Airport and the Ben Franklin Bridge in Philadelphia. The project included Niagara Falls on the U.S.-Canadian border and extended as far as Sri Lanka, Australia and Saudi Arabia, where Kingdom Tower was bathed in sapphire light. For more stunning images, check out the Autism Speaks Light it Up Blue website.
Two new studies take a look at what appear to be unusually high concentrations of children with autism in certain parts of California.
The first study, published in the journal Autism Research by a team from the University of California, Davis, identified ten autism hotspots or clusters in the Los Angeles and San Francisco regions, where autism rates were twice as high as in surrounding areas. The lead author, Irva Hertz-Picciotto, said that the hotspots could probably be explained by the fact that parents had a higher level of education in these areas.
“In the U.S., the children of older, white and highly educated parents are more likely to receive a diagnosis of autism or autism spectrum disorder. For this reason, the clusters we found are probably not a result of a common environmental exposure. ” said Dr. Hertz-Picciotto.
Still, Hertz-Picciotto does not rule out the possibility that there might be environmental exposures associated with higher levels of education and plans to investigate that possibility.
The second study by a team from Columbia University was published this month in Health & Place. This study looked at clusters based on where children were born, as opposed to their current address. The team, led by sociologist Peter S. Bearman, identified a large cluster in the Los Angeles area where children had four times the risk of being diagnosed with autism than children born elsewhere in the state. The cluster was seen throughout the period studied: 1993-2000 and was associated with high property values. The authors suggest that the higher incidence could be due to “local environmental or social dynamics.”
Bottomline: Not clear from these studies that anything beyond social factors–higher income, higher education and therefore better access to treatment–explains the high concentration of autism cases in some parts of California.
A fascinating controversy has erupted in the autism community over a new video produced for Autism Speaks. The slickly produced video, written by songwriter Billy Mann and directed by Academy Award-winning director Alfonso Cuarón, carries an ominous voice-over declaring that “I am Autism… I know where you live… I work faster than pediatric AIDS, cancer and diabetes combined…And if you are happily married, I will make sure that your marriage fails…”
Some members of the autism self-advocacy community are furious over the tone of this video. “We don’t want to be portrayed as burdens or objects of fear and pity,” Ari Ne’eman, president of the Autistic Self-advocacy Network told me. “Apparently, should my parents divorce it’s all my fault,” says Ne’eman, a 21 year-old activist and college student with Asperger’s Syndrome.
Ne’eman’s group, which has about 15 chapters around the country, has organized rallies and protests around the country. These advocates argue that if Autism Speaks had more people on the spectrum on their board, their messages would be more sensitive to the individuals they seek to help and they might also devote more resources to improving services to people with autism–as opposed to basic research and genetic studies that may not pay off for years.
“Groups like Autism Speaks choose to use fear and stigma to raise money, but very little is going toward services, research into improved educational methodologies and things that have a practical impact on our lives,” Ne’eman charges.
Peter Bell, executive vice president of Autism Speaks, says the video got plenty of positive response from the autism community. “But we realized it did hurt a certain segment of the population, which is why we removed the video link from our website.”
The video, Bell said in an interview, is a personal expression by Mann and Cuarón, each of whom has a young child with autism. “They are at that stage of life where they are grieving and unsure what the future holds,” he said.
The video, which turns hopeful about halfway through its 3 minutes and 44 seconds, was created for a “World Focus on Autism” event that coincided with the opening of the U.N. General Assembly in September. “It was never intended to have a life beyond that event,” Bell said.
Bell admits that Autism Speaks does not have any individuals with autism serving on its board. “We are looking at adding individuals with autism to various advisory committees.”
Perhaps more effective and certainly funnier than the rallies and protests are the many YouTube parodies that skewer the Autism Speaks video, including “I am Socks” and “I am Autism Speaks“.
Today, the U.S. government updated its official estimate of autism prevalence to 1 out of 100 children, up from the 2007 estimate of 1 in 150. The figure is based both on the latest data collected by CDC’s intensive ADDM monitoring network and on a large, but less rigorous telephone survey of more than 70,000 parents conducted by the Health Resources and Services Administration (HRSA). The HRSA survey actually found a somewhat higher rate of 1 in 91, but phone surveys are bound to be less reliable than studies like the CDC’s, in which a considerable effort is made to confirm each diagnosis.
What’s striking is that so many different epidemiological surveys now converge on this one figure of 1 percent. This includes studies in England, Japan, Sweden and Canada. Most interesting is that a recent British study of autism in adults also came up with the 1 percent figure.
“It’s reassuring to scientists that no matter how you shake the bushes, you come up with this 1 percent,” Roy Richard Grinker of George Washington University told me this morning. “It provides what scientists call convergent validity.” Grinker himself is about to publish the first study of autism prevalence in South Korea and he says his findings are in line with these other studies.
It was interesting to see federal health officials scramble to manage the message conveyed by the new studies. They clearly did not want to raise new fears about an autism “epidemic.” In fact, the E word was completely avoided in an embargoed press conference held on Friday. Tom Insel of NIH, Ileana Arias of the CDC and Peter Van Dyke of HRSA made an obvious effort to say that scientists don’t know if the new numbers represent a genuine increase in autism or better detection, while also going out of their way to convey a sense of urgency about government efforts to address autism.
More details about the new studies can be found in my story for Time.com.
Among the many great mysteries of autism is this: Where are all the adults with the disorder? In California, for instance, about 80% of people identified as having an autism spectrum disorder (ASD) are 18 or under. Studies by the Centers for Disease Control and Protection (CDC) indicate that about 1 in 150 children in the U.S. have autism, but despite the fact that autism is by definition a lifelong condition, the agency doesn’t have any numbers for adults. Neither has anyone else. Until now.
On September 22, England’s National Health Service (NHS) released the first study of autism in the general adult population. The findings confirm the intuitive assumption: that ASD is just as common in adults as it is in children. Researchers at the University of Leicester, working with the NHS Information Center found that roughly 1 in 100 adults are on the spectrum–the same rate found for children in England, Japan, Canada and, for that matter, New Jersey.
This finding would also appear to contradict the commonplace idea that autism rates have exploded in the two decades. Researchers found no significant differences in autism prevalence among people they surveyed in their 20s, 30s, 40s, right up through their 70s. “This suggests that the factors that lead to developing autism appear to be constant,” said Dr. Terry Brugha, professor of psychiatry at the University of Leicester and lead author of the study. “I think what our survey suggests doesn’t go with the idea that the prevalence is rising.”
In England, where there is widespread suspicion that the childhood vaccine for measles, mumps and rubella has led to an explosion in autism cases, the study was hailed as part of a growing body of evidence that the vaccine, which was introduced there in 1988, is not to blame.
Brugha’s study was part of a larger national survey of psychiatric disorders among adults. In the first phase, researchers conducted 90-minute interviews with 7,461 people in 4,000 randomly selected British households; the interview included a 20-item questionnaire designed to screen for autism. (Sample yes-or-no questionnaire items: find it easy to make friends. I would rather go to a party than the library. I particularly enjoy reading fiction.) Based on their answers in the first phase, investigators further assessed 618 individuals, using a battery of psychiatric measures, including a state-of-the art autism diagnostic tool. (About 200 of these participants had been selected for scoring high on the autism screen; the rest had been selected to sample for other disorders.) In the second phase, researchers identified 19 adults with ASD. But had they been able to evaluate all 7,461 in the survey, they estimate that they would have found 72 cases, or roughly 1% of the total.
One limitation of the study is its relatively small size, says Brugha. Being the first of its kind, it also needs to be confirmed by other studies. Another issue, notes Richard Roy Grinker, an autism researcher and professor of anthropology at George Washington University, who was not involved in the work, is that the study looked only at adults in the general population. Had it included people living in institutions, which is where the most severely autistic adults are likely to be, the estimated rate of ASD may have been even higher than 1%.
Michael Rosanoff, an epidemiology specialist with Autism Speaks, emphasizes that “the small sample size for estimating prevalence requires caution about interpreting this finding on a population-based scale.”
Despite its limits, the new study does begin to fill in the profile of high-functioning adults who are on the spectrum but living in an ordinary home in the community. Researchers found that they are primarily male and unmarried: about 1.8% of men surveyed were on the spectrum –among never-married, single men, an estimated 4.5% had ASD– compared with just 0.2% of women. (Brugha notes, however, that autism screening tools may be poorly adapted for identifying autism in adult females.) People with autism are less likely than average to have finished college but about as likely to be employed. Only 0.2% of adults who had finished college were on the spectrum, but the rate was 10 times higher among those without a high school degree. And, in contrast with people with depression or anxiety disorders, autistic adults were unlikely be receiving any sort of mental health services.
Why has it taken so long to do a study of this sort? For one thing, you need an enormous sample size –at an enormous cost–to find significant numbers of people with autism. Second, it’s more difficult to detect autism in adults than in children. Children often have glaring symptoms, like delays in learning to speak, extreme social withdrawal and terrible tantrums. Less is known about how autism looks in adults. “To diagnose autism, you need to have good information on people’s behavior,” says Brugha. “It’s much more straightforward to get that with children because you’ve got parents and teachers as observers. Adults with autism are not the best people to describe their own behavior.”
The Irish-born psychiatrist and epidemiologist says he sees a lot of adults with ASD in his own clinical practice, and “they have so much difficulty saying what their own difficulties are.” He suspects that this lack of insight and inability to communicate emotional issues also reduces their ability to seek professional help.
Efforts to identify and help adults with ASD have lagged far behind efforts to help children. And yet, Brugha notes that just having an ASD diagnosis to explain their troubles can be enormously beneficial to his adult patients, who often struggle with relationships at home and at work because of difficulty reading social cues. “Once you help them to understand that they are not the only person on the planet who is like this, and help their families understand, it can be a breakthrough. People also have a better chance of staying in their work, if their employer understands why they are the way they are.” Moreover, Brugha says it is not expensive to provide services to adults with relatively mild autism. “The cost of treating a child with autism is phenomenally high. We are not talking about this. We are talking about support, helping people adapt their lives” with help from a social worker.
Grinker, who has a teenage daughter with autism, finds the study to be in some ways comforting. “I would think that a study like this would encourage people that children with autism could grow up and have futures that are meaningful and that they are not going to end up in institutions.”
Note: This story was published on Time.com
One in 166 kids. One in 150. One in 100. We hear and read these astonishing estimates of autism prevalence but where do they come from? How are they derived? To better understand the basis for these estimates, I interviewed Catherine Rice, an expert on autism at the Centers for Disease Control and Prevention in Atlanta. To my utter amazement, Rice told me that the CDC did not create a national surveillance system for autism until 2000! The CDC began tracking autism rates in the Atlanta area in 1996. Before that, most estimates were based on studies in other countries.
If this is the case, then what’s the basis for the oft-repeated statement that autism is up more than ten-fold in the U.S. in the past 25 years? The answer, Rice says, is that 25 or 30 years ago, autism prevalence was based mainly on studies done in other countries that found a “fairy consistent” prevalence of 4 or 5 cases per 10,000–or about 1 in 2,000. However, these earlier numbers were based on an older, narrower definition of autism as a very severe disorder, rather than the broad spectrum we identify today. So, comparing today’s rate of ASD with the prevalence of this narrowly defined type is, she admits “Apples to oranges to some degree.” Still, this is what we are doing when we say that autism is up ten-fold.
Nowadays, the CDC has an impressive system for estimating how much autism is out there. The system is called the ADDM (Autism and Developmental Disabilities Monitoring) Network and it uses a dozen or so sites around the country to gather data from pediatricians, schools, neurologists, pediatric psychologists on 8 year-olds who have an Autism Spectrum Disorder diagnosis. (The theory is that most kids with ASD will have been diagnosed by age 8.) The sites vary in geographic size from a single county to the entire state of West Virginia.
Data collectors at each site not only look at the medical and school records of kids who were diagnosed with ASD, they cast a wider net for kids who may have been missed. “We also look for kids who have been evaluated for developmental problems that are associated with autism, like language delays or obsessive compulsive disorder,” Rice explains. “We look for concerns about their lack of interest in interacting with others, or not using gesture and making eye contact.”
Teams at each site “put together a composite for each child,” Rice explains. Then, in a second stage of evaluation, clinicians validate the suspected cases by going through files ,”to see if the child has the developmental behaviors and symptoms consistent with ASD.” All in all, it’s a stunning amount of work.
Rice says that the CDC works hard to bring consistency to the sites, but the quality of the data does vary from place to place and so do the prevalence rates. In 2007, New Jersey had a prevalence of 9.9 per 1,000, or about 1%. Alabama had one-third that rate. Rice noted that New Jersey schools are known to aggressively identify kids with ASD and refer them to the state’s extensive intervention programs. The low rate in Alabama, Rice says, probably “had to do with our ability to access education evaluations. However, she says, “we can’t rule out there was a true difference.”
Sometime later this year, the CDC will release new results from the ADDM Network. Researchers and advocates I’ve talked with expect the prevalence of ASD will rise again.
One reason autism rates appear to be rising is the reversal of the stigma associated with it. In the bad old days before 1980, when autism was thought to be a psychosis caused by cold, insensitive “refrigerator mothers,” no one wanted to have this label applied to their child. Far better to have the label mental retardation (MR), which was due to an act of God, not maternal malfeasance.
A new study released today brings another dose of evidence against the theory that vaccines and/or the preservative Thimerosal play a role in autism
“Put together with the evidence of all the other studies, this tells us there is no reason to worry about the effect of thimerosal in vaccines.”
But some critics immediately found fault with the study. In a HuffPost article, Robert F. Kennedy, Jr. and David Kirby blasted the study as another in “a series of deceptive and badly flawed studies” launched by the CDC to discredit the vaccine theory. One question they raised was why there was only one child identified with autism out of the 1,403 subjects. In their view, the evidence for an autism- vaccine connection is growing. That’s the polar opposite of what most public health officials think.
Today’s Grand Rounds presentation at the NY Psychiatric Institute did not directly relate to autism, but it sure got me thinking. The presenter was Virginia Rauh, Deputy Director of the Columbia Center for Children’s Environmental Health, part of the university which, I’m embarrassed to say, I had never heard of.
Rauh presented her research on what happens to young children who are exposed prenatally to high levels of the common pesticide chlorpyrifos (CPF). The 254 children in the study were inner city kids from the Harlem area and the Bronx. These areas had the highest level of CPF in New York State–higher even than agricultural areas, because CPF was widely used to kill cockroaches and other pests. Marketed by Dow as Dursban, CPF was banned from indoor use in 2000, but it continues to be sprayed all over the food chain: on fruits, vegetables, livestock and more.
Rauh and her team found that by age 3, kids with high prenatal exposures (6.17 pg/g plasma)–as measured in mother and infant blood at birth–had significantly more delays in mental and motor development than kids with less exposure. They were also more likely to have attention problems, ADHD and PDD (pervasive developmental disorder)–a broad category to which autism belongs. This work was published in Pediatrics in Dec. 2006.
Newer studies with Dr. Brad Peterson, the child psychiatry chief, are using MRI scanners to look at brain differences in kids who were highly exposed and kids in a control group. A pilot study with 25 children, ages 7 to 8, found that exposed kids had less white matter in key thinking areas like the prefrontal cortex and abnormal connectivity in their brains. Intelligence testing showed deficits in working memory and overall IQ.
The NRDC has called for a complete ban on CPF. Rauh attended federal hearings on the matter in Washington, DC, in September, where Dow scientists did their best to discredit her work. “We had our Erin Brockovich moment,” she said. Her concern is that it’s still very much in the food chain in the U.S. and certainly in imported food.
Dr. Peterson put in a plug for buying organic, and he wondered aloud if pesticides “could relate the the increasing rates of ADHD and autism.”
For decades, doctors believed that autism was rare.
The number of kids ages 6 to 17 receiving services in schools exploded after autism became a Special Education category in 1991. 1994: 22,664 2006: 211,610