Tuesday, July 15, 2003

By Anita Srikameswaran, Post-Gazette Staff Writer

Eddie Torisky is 46 years old, works 2 1/2 days per week at a Monroeville print shop and spends his weekends reading and listening to CDs on his boombox in his bedroom at his father's house.

Dan Torisky gives his son Eddie a playful jab at Apel Printing in Monroeville. Eddie is autistic and has worked at the company for 18 years. (John Beale, Post-Gazette photos)

He has autism and is moderately retarded. During the week, he lives in a Coraopolis group home. He used to live at the Western Center, and his father filed a lawsuit, still pending, in 2001 when the state Department of Public Welfare shut down the Washington County facility that had been his home for more than 30 years.

Dan Torisky will be sharing his experience and advice as a parent of an autistic person in a presentation at the annual conference of the Autism Society of America, which begins tomorrow and is based at the Westin Convention Center Hotel, Downtown. It ends Sunday.

"I'm going to tell them that [people with autism] never stop learning," Torisky said. "Never stop challenging them to learn, at their own rate."

Eddie Torisky wasn't diagnosed with autism until he was almost 11, and at that time there were no intensive interventions, such as behavioral and speech therapy.

One Saturday morning when he was 28, his father went to Apel Printing to get some papers bound and took Eddie with him.

The younger Torisky had already put the pages in order, and manager Bob Apel asked him if he enjoyed that kind of work. I can do it, Eddie answered. Apel offered him a paying job.

Is that a job in the community? Eddie asked. Apel said, I think I'm in the community.

Once home, the young man quietly told the family dog his good news. Then he went to his room. What he did next made his father cry like a baby.

The younger Torisky yelled at the top of his lungs, "I got a job in the community, and I earned it!"

He has been working part time for 18 years now doing collating and what he calls "housekeeping" at Apel and the Autism Society of Pittsburgh, of which his father is president.

The money he earns is used to defray the cost of his care, Dan Torisky said.

"He does square roots in his head," Torisky said of his son. "He does a lot of things that are amazing but totally useless. He always will need social oversight."

Torisky will be on a panel with other parents, including Cindy Duch of Penn Hills, whose 8-year-old son Andrew was featured in a story in Sunday's Post-Gazette.

"If you can save a parent one additional step, maybe they can get therapy faster or find something they might not have found otherwise," Duch said. "I try and get involved with things that will help that way."

About 2,000 people are expected to attend the conference, which is being held in Pittsburgh for the first time, said Rob Beck, executive director of the national autism society. It will bring together researchers, health care providers, people who have autism and their families and government officials. More than 120 presentations will be given on basic research, therapeutic interventions and raising awareness of the condition.

Autism is estimated to affect up to 1.5 million Americans and recent studies indicate that the incidence rate is rising dramatically. Beck said that while the U.S. population increased by 13 percent in the 1990s, autism cases jumped by 172 percent.

Scientists are trying to uncover the reasons for the startling increase, which does not appear to be fully explained by a broadening of the autism case definition. Care costs $90 billion annually and is projected to rise to more than $200 billion in the next decade.

However, current funding for basic and applied autism research is about $50 million annually.

"That's not nearly enough of a commitment to try and do something about autism," Beck said. "That's one of the key issues, getting additional funding to address this national health crisis."

The growing numbers of children with autism could have a huge impact on school systems and the provision of special education. Already many affected families are frustrated by the low funding levels of the Individuals with Disabilities Education Act, or IDEA.

If autistic children are diagnosed early and intensive behavioral services are promptly put into place, they stand a better chance of living fuller lives, Beck noted.

"In many cases they can be educated, can be able to socialize with other people, can learn to hold a job and pay taxes and do all kind of other things to become meaningful and productive members of society," he said.

Estelle Richman, secretary of public welfare for the state, is establishing an autism task force to "improve the organization, financing and delivery of services and treatment for people with autism in Pennsylvania," said spokeswoman Stephanie Suran.

Eddie Torisky gets through his chores as a janitor at Apel Printing.

The task force will include family members, health care workers, researchers and educators, and plans its first meeting in Harrisburg July 26. It will have nine subcommittees focusing on early intervention, adolescents, needs of adults and education and training.

Claude Allen, deputy secretary of the U.S. Department of Health and Human Services and Robert Pasternak, assistant secretary for special education and rehabilitative services in the U.S. Department of Education, will be making presentations at the conference.

There also will be sessions about the measles-mumps-rubella vaccine and environmental factors that some have contended contribute to the development or worsening of autism, Beck added.

"At this stage of the game, there's been no causal relationship that's been scientifically found, but there's an awful lot of very upset parents who seem to be able to link the two together," he said. "And we believe that there needs to be significantly more research into this area."

One of the keynote speakers will be Temple Grandin, an associate professor of animal science at Colorado State University, who recounted her experiences of having autism in two memoirs.

Among local reseachers, Dr. Nancy Minshew, director of the Center for Autism Research at the University of Pittsburgh School of Medicine, and her colleagues will discuss "how people think and what the brain is doing when people think," as she put it.

Minshew is one of several people who will be honored for their leadership in the autism community. The conference gives her an opportunity to talk to parents and offer hope.

"There will be a cure for autism and it will be in the lifetime of their children," she said.

Cynthia Johnson, director of the Autism Center at Children's Hospital, will be giving a talk on innovative treatments, including early findings from a drug study she conducted.

The hospital recently launched a follow-up clinic for families with new diagnoses of autism. It was created in response to criticisms that after parents were told their children had autism, there was often a long lag before services were put in place.

"Families often felt somewhat at a loss, overwhelmed, abandoned," Johnson said.

Anita Srikameswaran can be reached at anitas@post-gazette.com or 412-263-3858.