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Parent laments lack The top child psychologist in the state told Lee Grossman on Dec. 30, 1991, that his son was severely retarded. It is something Grossman will never forget.
of services for
autistic children
Lee Grossman's son was
diagnosed with the disorder in 1991By Pat Gee
pgee@starbulletin.comThe psychologist told him: "The best you can hope for is, he will be happy. That's all I can offer you. Happy New Year," Grossman recalled.
"In less than a minute, he dismissed me," Grossman said, noting these stories are commonplace in the life of autistic children.
His son Vance was later diagnosed with autism, a neurological disability that affects communication and social interaction.
Stunned and heartbroken, Grossman, a Honolulu business owner, turned to the Autism Society of Hawaii for help and found "a tremendous fellowship" with the "most passionate, most involved, caring and supportive" people.
He started as a parent searching for answers to help his child, and his involvement has grown to the point that Grossman has been elected national president of the Autism Society of America.
"We can't be advocates anymore; we have to become activists," he said of the 24,000 members who make up the national organization.
Grossman, past president of the society's Hawaii chapter, has been a member of the national board of directors the past six years, the last four serving as first vice president. He has been involved with the Felix class-action lawsuit here from its inception.
"I am totally overwhelmed by the startling statistics" on the growth of autism, he said.
"It's a crisis we're in," he said, adding, "2002 will be a breakout year for autism. We have to make this a national issue."
He said: "It is the most underfunded disability of America. The number of those diagnosed with autism exceeds those diagnosed with AIDS."
In Hawaii the state Department of Education reported 71 pupils with autism in 1994; in 2000 there were 276, nearly quadruple the original number in six years, he said. In the last five years, there has been a "triple-digit percentage growth all over the country," he said.
Grossman compares what families with autistic children face every day to the Sept. 11 terrorist attacks.
"That constant state of crisis is what they live with," he said. "There's nothing for us to grasp onto. Services are virtually nonexistent. It's not easy living with an autistic person.
"What we really need is to get help for the kids, their families and caregivers; 150,000 people with autism (in this country) need help."
And because Grossman is still living it, "It's very easy for me to get wound up, to get passionate about it," he said.
Autistic children, he said, need early diagnosis and intervention, behavior management, speech and occupational therapy, socialization programming and vocational training in their early teens. These services need to be maintained with "intensity," he said.
The Hawaii Autism Society was instrumental in starting and eventually winning the Felix lawsuit against the state for improved educational services on behalf of all special-needs youngsters, he said.
"But Felix is a dismal failure in my eyes," Grossman said, adding that there is no real improvement in services even though the state is moving toward compliance with the federal mandate.
"Basically, it's been a paper compliance," he said. "I'm so frustrated about what's been going on here. Felix is a lost battle. There is very little change we can affect locally at the school level. ... We tried to change the system. We filed a lawsuit that we thought could help us, but it hasn't."