Current events breathe new life into sociologist's dissertation

On behalf of the families who gave her so much, researcher works to connect two towns where autism rates are elevated

As reports began to filter into the national media about a possible cluster of autism cases in New Jersey, Martha E. Lang picked up her telephone and dialed.

Lang, a paraprofessional in Bio-Med, had in mind another town where parents understood the trials of raising a child with autism, of discovering neighbors doing the same, of suspecting an environmental link, of calling for a health department investigation and then answering the never-ending questions sparked by the national publicity that follows.

It was the information she learned interviewing parents in Leominster, Mass., for her sociology dissertation, and Lang wanted health officials and reporters covering the events in New Jersey to know about it.

"I just want the story about Leominster to get in the discussion," said Lang, who received her doctorate from Brown last May. "The more information we have about autism clusters, the better chance we can find a cause."

She also wants to make sure the stories of Leominster families, who let a Brown University graduate student into their lives, do not get lost.

To and from Plastic City

It was through the national media that Lang first learned about Leominster, a city in which parents feared pollution from plastics production had caused their children to be born autistic. In 1992, Lang saw a "20/20" report on the municipality that had dubbed itself the "Plastic City" in honor of its industry, and decided to make it her research.

"I was interested ... clearly there was media attention and attention from public health officials and yet there was no social action movement" typical of community response to toxic-waste induced disease, said Lang (left).

Early on, parents of children with autism had urged officials from the Centers for Disease Control (CDC) to investigate the cluster. The investigation received national media attention but the parents did not initiate litigation or confrontation against any companies, or continue as a group to be vigilant about proving the cluster, according to Lang.

She set out to determine why, spending many hours at the kitchen table of Lori Altobelli, who was central in the community response. Lang interviewed parents whose autistic children ranged from Altobelli's 6-year-old son to a 22-year-old.

"They looked at me like I was crazy when I started talking to them about social movements. They said 'we're parents of children with autism - we don't have time,'" said Lang. "They were thrust into the role of being activists for their children. It left little time and energy to be activists on the environmental front."

Autism varies in severity and has no known cause and no real cure, although it is now regarded by many as resulting from cognitive deficits due to brain dysfunction. While children with autism may thrive physically, they may stare into space for hours, throw tantrums, show no interest in people, or pursue repetitive activities.

Based on research conducted by the Leominster parents, said Lang, "there is no question the [autism] rate is elevated." Autism naturally occurs in 1 in 500 people, but parents believed the rate was about twice as high as would be expected in the general population, said Lang.

One of the reasons Lang is trying anew to increase awareness about the Leominster cases relates to the history of autism diagnosis.

Until the mid-1970s, parents were blamed for the disorder, said Lang. Early psychoanalytic theories of autism painted a picture of children who had turned inward to survive because their parents were distant and aloof. Parents were sometimes sent to counseling to determine what they were doing wrong.

Even when the professional literature began to view autism as a condition resulting from cognitive deficits due to brain dysfunction, that stigma did not go away quickly in the general public, said Lang.

"One of the manifestations of autism is socially-unacceptable behavior," said Lang. "Parents are blamed all the time by the people around them ... strangers in a supermarket when a child goes into a tantrum."

It was with some hesitation that families invited Lang into their homes to do her research, she said. "It was very uncomfortable to go in, get people very upset and leave," said Lang. "Eventually I developed a sixth sense when I saw a lump forming in a throat and offered to switch topics. It takes a toll to be witness to that much sadness."

Lang found parents whose time and energy was entirely consumed by raising children with autism. On top of that, they were frustrated by the difficulty that researchers had in proving their cluster.

Roadblock

Several factors make clusters difficult to document, said Phil Brown, professor of sociology and Lang's dissertation advisor. People move in and out of towns; connections between pollution and illness are not always clear; and sometimes the occurrence is random, he said.

"It's very common that people report clusters and very frequently they are denied because they're hard to prove," said Brown. "Experts in environmental sociology would argue that there are far more clusters than are admitted by health departments or the Centers for Disease Control. Health officials often fear harming the business climate by pointing to pollution-related illnesses."

The state's public health officials, to whom the investigation was referred by the CDC, never determined that a cluster existed in Leominster. (Several thousand reports of clusters are received by the Massachusetts Department of Public Health each year, according to spokesman Mark Leccese.)

However, that was also the initial scenario in Woburn, Mass., where a childhood leukemia cluster was documented - a case now popularized in a best-selling book and movie "A Civil Action," said Brown. The public health department originally determined that there was no cluster, a case Brown wrote about in an earlier book on the Woburn case, "No Safe Place: Toxic Waste, Leukemia and Community Action."

It was only after intense media attention and litigation that the department re-analyzed the data and reversed the findings, Brown said.

The difficulties of documenting a cluster now befall the parents in Brick Township, N.J., where health officials are conducting an investigation.

There, a law firm has attempted to drum up action among the parents. The firm placed a full-page advertisement in two area newspapers promising to "fight for your legal rights" against "an identifiable polluter," according to The New York Times.

Lawyers first attempted to enlist the Leominster families to sue their corporate neighbors too, said Altobelli. The lawyers' messages started arriving from firefighters during the "20/20" segment because the station was the only town office open when the television show aired at 10 p.m., and the Altobellis' number was unavailable, she said.

"Maybe if we had sued, people would have stood up and taken notice," said Altobelli. But the parents did not want to place blame as much as to see the pollution cleaned up, and that was eventually accomplished without litigation, she said.

After years of trying to also get validation from state health officials, Altobelli said she has stopped. "I'm being a mother now instead of an activist - I can't do both." She works, is a wife and mother of three children, and has moved out of Leominster.

Altobelli did, however, recently write to the parents in New Jersey. "They're at the beginning of the road I spent years on."

Crossroads

Before a newspaper headline caught her attention last month, Lang had set aside her dissertation.

The past several years had been busy. In addition to writing the dissertation, Lang presented her preliminary findings at the American Sociological Association meeting in 1994. After getting her degree, she completed a nine-month study of the state of services available to children with autism in Rhode Island for the state's Department of Education Office of Special Needs.

Lang thought her 250-page volume, "Welcome to the Plastic City: Community Response to the Leominster Autism Cluster," would eventually be published. Now it is more of a goal than ever, she said. If and when it is published, the dissertation will start with her note to the families she researched:

"You gave freely to me of your time and energy which is so precious when raising a child with autism ... I hope and pray that I have done justice to your words and experiences."