CINDY ELLEN RUSSELL / CRUSSELL@STARBULLETIN.COM
Naomi Grossman and son Vance, 16, read at home in Kailua, above. Vance was diagnosed with severe autism at a young age.
The incidence of isle children
with autism has increased at an
alarming rate in recent years,
and nobody knows why
Childhood autism in Hawaii is growing at an epidemic rate, according to Autism Society officials.
The state Department of Education has categorized more than 720 kids with autism out of about 23,000 in special education in 2002, or about 3.1 percent, compared with 1 percent nationally, said Naomi Grossman, Autism Society of Hawaii president.
"It's no longer just an alarming rate; it's an epidemic pace, and we're really concerned because it could be due to a lot of things, like the Brick Township in New Jersey," Grossman said.
In Brick Township the federal Centers for Disease Control and Prevention found in 1998 that 6.7 of every 1,000 children age 3 to 10 had autism disorders. The rate -- three times greater than in previous years -- suggested a possible geographic cluster. An investigation indicated the number of cases could be affected by environmental factors as well as genetic influences.
Usually diagnosed before age 6, autism is a spectrum of neuropsychiatric disorders affecting a person's ability to interact socially and communicate, causing unusual and repetitive behavior.
The number of Hawaii residents age 6 to 22 diagnosed with autism rose to 528 in 2002 from 64 in 1993, according to Fighting Autism, a research and advocacy organization.
Every state has shown a triple-digit or higher increase in autism cases in the past 10 years, said Lee Grossman, chairman of the Autism Society of America. Other countries are seeing the same growth rates, he said.
CINDY ELLEN RUSSELL / CRUSSELL@STARBULLETIN.COM
They are joined in the garden by Vance's brothers, Garrett and Clinton Brodey, and grandfather Mits Uchibori.
He said the incidence is climbing at 10 percent to 17 percent a year and is as high as one in 166 children in some communities.
Scientists cannot explain the drastic increase.
"I would hate to guess," Lee Grossman said, suggesting there may be "myriad reasons."
He said some attribute it to a broader diagnosis of autism, which might account for 20 percent to 30 percent of the growth.
"But what about the other 70 to 80 percent?" he said.
Dr. William Bolman, a child psychiatrist and retired University of Hawaii professor, said in 25 years of teaching he saw only three or four patients with autism. Now he has 200.
"It's not subtle at all," he said.
And it is not just autism that has increased, Bolman added, noting similar jumps in attention deficit hyperactivity disorder and childhood depression cases.
"If you have three different clinical syndromes ... there's something underlying it, not just genetics," he said.
It costs an estimated $60 billion to $90 billion a year to serve the current autism population, and the annual cost in the next decade in the United States will be $300 billion to $400 billion, Lee Grossman said, but two-thirds of the cost can be reduced with early diagnosis and intensive intervention.
Bolman said the state Department of Education "is doing a wonderful job trying to prevent all these costs later on, but it's blowing their budget tremendously."
He said intensive services often involve a lot of people and are costly, but even severe cases can be helped.
"Early intervention is the key, hopefully as young as 2 years old and absolutely before the age of 5, if we can get them," he said.
The Grossmans, divorced parents of an autistic son, Vance, were part of a small group that brought a class action suit against the state in 1993, resulting in the Felix consent decree. The federal court decree orders the state to provide adequate mental health and education services for disabled children.
Naomi Grossman said Vance, now 16, was diagnosed with severe autism but has improved in school, and with support has a good chance of going to a junior college.
"He's a very, very good kid and a joy to all of us, our family, and we love him dearly," Lee Grossman said. "He hasn't had a lot of behavioral issues that a lot of children of autism have as a result of his condition."
He said Vance does not require services that perhaps 80 percent of families with autistic children need.
"These families are living in crisis, and, on a daily basis, trying to find services for a child who, because of disability, is out of control."
Dr. Margaret Koven, a developmental psychologist, said the huge upswing in cases in recent years cannot be attributed solely to changes in autism definitions or earlier diagnosis.
"People have jumped on all kinds of things for causes -- vaccines, water, chemical pollution. ... We don't have conclusive evidence about any cause."
Koven, who was psychologist for the state's Zero to Three intervention and development program, said there may be as many as 150 more Hawaii children with autism than the Education Department counts.
"There are plenty of kids out there with an autism diagnosis, but they're not counted as special ed kids because they're not getting services," she said.
Specialists also know that kids with autism might have a second diagnosis, such as attention deficit hyperactivity disorder, depression, anxiety or a bipolar disorder, she said.
Koven said long-term planning is needed.
"It's a cost-shifting issue. If kids got intensive services four or five years upfront, the cost of taking care of adults with a normal life span would drop tremendously," she said.
The lack of services and support affects parents, siblings, grandparents, aunts and uncles, and professionals, as well as those with autism, he said.
"It's not 1 (million) to 1.5 million people with autism; it's tens of millions of people impacted daily," Lee Grossman said. "The only magic bullet I've seen is day-in, day-out working with a child to try to improve their living, their life."
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Go for a walk
The Cure Autism Now Foundation will hold a 5K fund-raising walk, community resource fair and family festival, starting with check-in at 7:30 a.m., on Saturday at Magic Island, Ala Moana Park.
to help cure autismAll proceeds of the Walk Now Honolulu event will go toward research to find the cause of autism, effective biological treatments for the affliction and a cure.
Each walker who raises $100 will receive a Walk Now T-shirt. Individuals and team captains who raise $2,500 will receive a Cure Autism Now fun kit.
Festivities will include a carnival area with moon bounces, arts and crafts, and other activities for kids. There is no fee to participate in the event, which is being sponsored by Verizon Wireless.
The Cure Autism Now Foundation has raised more than $18 million for research since 1995. It has established and supported the Autism Genetic Resource Exchange -- a collection of DNA from families with more than one child with autism -- and conducts outreach and awareness activities for families, physicians, government officials and the public.
The Honolulu chapter is the latest group to join the support network for Cure Autism Now across the United States.
For more information about Cure Autism Now or Walk Now Honolulu, call 888-8AUTISM (828-8476) or see the Web sites www.cureautismnow.org or www.walknow.org.
Star-Bulletin staff
