Group goal to raise autism awareness

PAULA SCULLY
Times-Beacon Staff Writer

LITTLE EGG HARBOR -- Raymond Gallup, founder of The Autism Autoimmunity Project, or TAAP, remembered when his son showed symptoms of autism.

Gallup and his wife realized he needed medical help until age 3 and it took a year to get a diagnosis.

All went along until he grew up and became violent, forcing his parents and sister to lock themselves in their bedroom. Now he is in an institution in Delaware and his father cries when he thinks that the immunizations may have created the autism, which is one current theory about what causes of autism.

Autism and its causes are still a puzzle. The symptoms often appear in early childhood. The Centers for Disease Control in Atlanta report that 1 child in 166 (six in 1,000) shows some symptoms of autism spectrum disorder.

"When do they call it a national epidemic?" Gallup said. "Five years ago, autism was 1 in 500, then 1 in 1,000. When will they decide? When it's one in five or one in 10?"

Parents recently conducted an awareness raising festival called "A Concert for ELLEN and Children with Autism" at the Little Egg Harbor Community Center. many of the parents know each other from the autism support group is at the Southern Ocean County Hospital Family Resource Center at the Ocean Club on Route 9, Stafford.

Autism is a developmental disorder that typically appears during the first three years if life. It is a spectrum disorder, meaning symptoms can range from mild to severe. The developmental delay is unique to each individual.

There are no medical tests specific to autism. The diagnosis is based up on the presence or absence of certain behaviors, such as impairment in social interaction, communication skills, social skills or difficulty in interests and activities.

The CDC is conducting studies to see if there is a link between immunizations and autism, as well as other studies about other potential links to autism.

Ellen Sweeney, president of the New Jersey chapter of TAAP, said there is a fine line between being anti-vaccine and pro choice.

"My child did react to the measles-mumps, rubella vaccine, to the thimerosal, a mercury-based preservative," she said.

She said parents should be concerned if a child does not babble or coo by 12 months; does not gesture, point, wave or grasp by 12 months or does not say a single word by 16 months or any loss of language or social skills.

"There is no single cause of autism but it is generally accepted by the medical community that it is caused by abnormalities in brain structure or function," she said.

The Individuals with Disabilities Education Act, known as IDEA, guarantees the right to a free and appropriate education, said Sean Kevin Smith, a Freehold attorney, who represents parents in disputes with a school district and also sets up a special needs trust.

"First, the family meets with the school district for an IEP, an Individual Education Program. It is documented that the school will take these steps," he said.

"A typical dispute is after the IEP is set up, the district fails to meet its requirements; the school board and the parents disagree or the school board fails to implement all the parts of the IEP," he said.

Then he would meet with the school board to work out a solution. Failing that, it would go to mediation for administrative remedies and failing that, would go to court.

Brian Lang, a representative of Mutual of Omaha, said parents of special needs children need to know they should set up a special needs trust for their child. A life insurance policy can be used to fund the special needs trust. The trust supplements Medicare or Medicaid.

The trust holds the proceeds of insurance, funds or assets in trust for the benefit of the individual.

"Many parents leave money to the child, who then has too many assets to qualify for needed programs. The trust holds the assets for the special needs individual so the individual can obtain all the benefits he or she is entitled to and the trust pays for additional benefits," he said.

Jane Tallman of Barnegat has a 28-year-old son with autism.

"When he was little. it was one in 1,000 children who were diagnosed with autism. There were only certain programs available back then and very few programs for autism. When my son was younger, there wasn't any internet. I did the research myself at the library," she said.

"I'm involved with many groups in the hope that I can help someone," she said, adding she is involved with www.unlockingautism.org.

Michael Presti, who organized the festival with his wife, Chris, cried when he said many people assume parents cannot control their child or are abusing the child when the see a a child with autism having an episode in a store.

"Ask the parent if he or she needs help. Is it that hard to say, 'Can I help you?'" he said.

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