By Ellen Barry, Globe Staff, 11/29/2002

or years, parents and teachers in Massachusetts have quietly compared notes on the increasing number of children being diagnosed with autism, and the increasing demand they will place on an already strained social service system.

This week, public health officials initiated the first statewide study of the incidence of autism, a developmental disorder that can prevent children from communicating or forming relationships. A similar study by the California Department of Developmental Services reported a startling increase in the disorder of 272 percent from 1987 to 1998, prompting urgent demands for state services and stepped-up research.

Advocates hope the data will have a similar effect here.

''We couldn't go to the Legislature and say, `This is the scope of the problem. We need funding,''' said Gail Kastorf, director of the Autism Support Center in Danvers. ''Anyone at [the Department of Mental Retardation] will say they are being flooded. The school system is certainly flooded. Everybody's talking about it, but we don't have those numbers.''

If the study supports the increase that activists describe, it will venture into controversial territory. Common scientific thinking holds that autism is predominantly caused by a genetic defect, and specialists caution that the number of cases could be rising because parents are more aware of the disorder and doctors diagnose it more frequently.

Many parents, however, are convinced that their children's illnesses were triggered by environmental influences, and that the rising number reflects childrens' exposure to chemicals or vaccines.

Increasingly, educators and state officials have lined up behind parents' groups in noting the sheer change in numbers - and warning that legislators must acknowledge the growth when tailoring future state budgets. State services for a person with autism can cost as much as $4 million over his or her lifetime, according to a study published in 1988 in the journal Behavioral Interventions.

''There's no question that if you're looking for over the next several years, you're talking about an issue that involves tens of millions of dollars,'' said Representative William M. Straus, a Democrat from Mattapoisett, who pushed to include the survey on the Department of Public Health's mandate for this year.

The stir that resulted from the California study this fall underlined how little is known about the prevalence of autism. Early epidemiologists described it as a rare disease, affecting 4 or 5 children in 10,000, but estimates have crept steadily up and now range between 2 and 6 children per 1,000. The Centers for Disease Control and Prevention, which studied the community of Brick Township, N.J., reported an even higher rate there, of 6.7 children per 1,000.

In Massachusetts, anecdotal evidence suggests that there is a true rise in numbers. Within certain communities, advocates describe clusters of babies born with the disorder and school officials complain of the crippling cost of providing educational plans. State officials, too, have watched autism cases increase with their own eyes, said Larry Tummino, assistant commissioner for field operations at the Department of Mental Retardation.

''It is our perception; it's been recognized nationally and internationally,'' said Tummino, whose agency serves about 4,000 citizens with autism. ''I think we're already acknowledging it'' by participating in the DPH study.

The study, requested by legislators as part of DPH's budget last year, has lost much of its original funding in a 40 percent cut to the agency's budget, said Suzanne Condon, assistant commissioner of public health, who is overseeing the study. Much of the census information will come from the Department of Education, which will give researchers access to school health records, she said.

When the data is ready, it could prompt a reorganization of state responsibilities, which are now divided between school systems and the Department of Mental Retardation, Tummino said. Other states have created partnerships or separate agencies to deal with the manifold needs of families whose children have developmental disorders.

For years, though, advocates asking for a head count got little response from state or federal officials, said Jerry Silbert, parent of an autistic boy and president of the Massachusetts chapter of the Autism Society of America. Silbert believes that cases have increased ''20- to 30-fold'' in recent years and now represent 1 percent of births.

''No one says, `You know, 20 years ago, we missed this,''' said Anke Kriske of the Autism Society of America, whose 13-year-old has the disorder. ''They say, `You know, 20 years ago, we didn't see this.'''

Ellen Barry can be reached at barry@globe.com

This story ran on page B1 of the Boston Globe on 11/29/2002.
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