In the discussion thread: Autism in US more common than previously thought; wider screening, better diagnosis cited [View all]
Response to polly7 (Reply #42)
Thu Apr 26, 2012, 10:23 PM
proverbialwisdom (4,058 posts)
49. More on Brick Township, NJ reported by Mark Blaxill here:
Posted by Age of Autism at April 03, 2012
Best of AofA: CDC What Did They Know and When Did They Know It?
By Mark Blaxill
The CDC lost its way on autism in Brick Township, NJ.
I know little about the CDC's activities in the years up to 1997, and there are few signs of a broader recognition of an autism problem that one can find before then. But in the fall of 1997, at a parent support group in eastern New Jersey, a few people started commenting about how many new autism cases seemed to be cropping up in Brick Township, and how there seemed to be an unusual number of 3-4 year old children with a new autism diagnosis. One of the attendees at the support group, a mother named Bobbi Gallagher who had two young children with autism, was struck by this coincidence. Living in New Jersey (although Brick is on the Jersey Shore, not the polluted stretch of highway along the New Jersey Turnpike that makes a mockery of New Jersey’s nickname, “The Garden State”), the thought of environmental contamination came naturally to mind and she wondered if there might not be a cluster of autism cases in Brick. Perhaps, she thought, there was something in the water. So she resolved to do something about it. She decided to send around a survey to see if she could count the autism cases in all of Brick, a town of some 70,000 people.
So as the new 1997 school year was starting, Bobbi Gallagher distributed her survey form everywhere she could think of in town. And in a few short weeks, she got a surprising result. Based on the responses to her impromptu survey, she counted over 40 autistic children in Brick Township alone and over 30 who were just three or four years old. Armed with these results, Gallagher formed a group called the Brick POSSE (Parents of Special Services and Education) and organized a meeting at the local library a couple of months later. They contacted Eric London at the National Alliance for Autism Research (NAAR) who in turn invited a number of academic epidemiologists. To a full house at the library meeting, Bobbi Gallagher shared her findings. One of the epidemiologists present, Craig Newschaffer, decided the numbers were disturbing enough to contact the New Jersey Department of Health and Senior Services, who in turn contacted the CDC. In the meantime, the Brick POSSE arranged a meeting with their congressman, Rep. Chris Smith, who invited them to a meeting in his office in Washington.
Within weeks, a more organized response took shape. Bobbie Gallagher received an invitation to another meeting in Washington, this time in New Jersey Senator Robert Toricelli's office. Gallagher remembers the date for this meeting vividly, April Fool's Day, 1998. And when she walked into the room she was astonished at how quickly plans had emerged. She had expected again to play the role of supplicant, pleading with the government officials to take action. Instead, she found a prompt and aggressive action plan being put on the table. In the room that day were representatives from multiple departments within the CDC who had come to the Senator's office equipped with a multi-part plan, the first part of which was a prevalence study for Brick Township, an in-depth survey of the town's autistic population that would pick up where Gallagher's survey left off. CDC had identified a core team of staffers to lead the effort, including Jacquelyn Bertrand and Marshalyn Yeargin-Allsopp from the National Center on Birth Defects and Developmental Disabilities (NCBDDD) and Frank Bove from the Agency for Toxic Substances and Disease Registry (ASTDR). Their proposal: to diagnose every child with autism in Brick Township between the ages of three and ten years old. They would start canvassing for cases and conducting interviews beginning with the start of the 1998 school year in September. And they planned to move quickly (at lightning speed really), to have their initial results ready by the end of the year.
They were true to their word. Two diagnosticians, Dr. Bertrand and Dr. Audrey Mars from the nearby Robert Wood Johnson Medical School, spent several days a week diagnosing children in the fall of 1998. And by January 12, 1999, the CDC had confirmed the findings of Gallagher's initial survey. Out of an initial estimated Brick population of 6,000 children from 3-10 years old, they had found over 40 cases of autism, giving a preliminary rate that was 12 times the estimated prevalence in the rest of the country. "I think there is a cluster here. I don't know why," lead investigator Bertrand said in an article by the Associated Press the next week. "If it's something that can be taken out of the community, that will be done," she said. According to AP she also added another intriguing tidbit: that "the researchers are eager to solve the puzzle here because of escalating calls the last few years about possible, but less credible, clusters elsewhere in the nation."
It all seemed to Gallagher like a dream: the cavalry had arrived and somehow they were going to get to the bottom of the issue. But then, something strange happened. Suddenly, the lines of communication with the CDC team went dark. After several months of intensive planning, intensive collaboration and rapid response, the CDC team told Gallagher that they were not at liberty to discuss the results with the parents any longer. According to Gallagher, one of the CDC staffers informed her that the mere mention of the word "cluster" had provoked a reaction from the higher ups within the CDC. Apparently, there was now even a debate as to whether they could use the word "elevated" when describing the prevalence rates. So from January 1999, until the release of the final study in April of 2000, there was no more interaction with the CDC. Not a single word.
More at link.
Mark Blaxill is Editor At Large for Age of Autism.
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