Thursday, July 31, 2008

Parents, Professionals Share Experiences At Autism Summit

Just one year ago, Casandra Oldham's life was changed forever with one word: autism. Before that her then-two-and-a-half year old son was normal, she said.

"He had words, he put them together; he would play. He slowly regressed over the winter," Oldham said. "He got to the point where he would sit in the corner all day, chewing on his shirt and playing with the shadows that came in through the window. He lost all his words. He lost his communications skills. He lost his ability to play."

Her story was one of many shared during Monday night's Autism summit held in Lansdowne to focus attention on the needs of children with the brain development disorder and on proposed state legislation that could help families afford treatments.

Oldham said her family had only moved to the area about a year before her son's diagnosis. They started an applied behavior analysis program for her son, a costly treatment not covered by health insurance, but which has received much praise in recent years as an effective treatment for autism. When the family's car broke down and as bills began to pile up, they eventually had to shut off part of their water to continue paying for their son's treatments.

Oldham then watched as her second child, only 17 months old at the time, began to regress. He lost the ability to point, and to chew, she said. Her younger son was then tested for mitochondrial disease, and the test came back positive. She had her older son, then three years old, tested as well. His test also came back positive.

"They were born normal," Oldham said. "They acquired the mitochondrial condition that brought about their autism."

"Let me say this about the [applied behavioral analysis]: the ABA works on both my children. But I had to sit there, and I had to choose. Do I pay the $3,000 to have my kid potty trained, or do I ask if my child can speak?" she said. "These are the choices I had to make. Do I help my baby, who at least they caught sooner, and might have more hope, or do I help my three year old?"

After her sons' were diagnosed, Oldham turned to the community of parents with children suffering from autism, and was able to get help for her 17-month-old child this summer. Her three year old started school last year, and while she praised the teachers who work with her son, both she and the teachers know it is not enough, she said. But the cost of treatments is just too high.

"They're young, and they have potential," she said of her children, "but we just don't have the resources."

When she started her 17-month-old child's ABA treatments, the cost of 21 hours of treatment every week was $3,600 per month. Her doctor recommended 40 hours of treatment each week. To treat both of her children at the doctor's recommendations, her family would have to pay more than $14,000 every month.

Parents at Monday's Autism Summit also heard testimony from experts in the field of autism treatment about advances in treatments, and from state legislators backing a bill that would require insurance companies to provide coverage for autism treatment.

Jane Barbin was at the event representing the Association for Science in Autism Treatment. The association works to spread scientific information about the treatment of autism. Barbin spoke in favor of ABA treatments, citing studies by several task forces, including the New York State Department of Health of the Office of the U.S. Surgeon General.

"And what that office has said," Barbin said, referring to the Surgeon General's report, "is they have concluded that there is over 30 years ... demonstrating the effectiveness of applied behavioral analysis in decreasing inappropriate behaviors," such as aggression, hand-flapping, and non-functional vocal responses.

Barbin said the Surgeon General's Office also concluded ABA "is effective in increasing certain behaviors that are important," such as communication and social skills.

Delegates Robert Marshall (R-13), David Poisson (D-32), Thomas Rust (R-86), Charles Caputo (D-67), and Senator Mark Herring (D-33) attended the event, hosted by the Loudoun County Autism Network, and expressed their support for House Bill 83.

The bill, which was introduced by Marshall, after working with one of his constituents, originally sought to address the lack of insurance coverage for services for all children with developmental disabilities, but has since been amended to focus only on those children who have been diagnosed in the autism spectrum.

The bill was left in committee during last spring's session, but it has been regenerated with a public hearing anticipated in Richmond some time this fall.

"Every child is special. And we need to remember that providing these services is expensive, but it is an investment. And most importantly, it is an investment in children," Rust said Monday.

Children with autism who receive treatment early can eventually enter the work force, instead of becoming wards of the state, which would offset the costs of covering autism under insurance programs, he said.

Marshall spoke about how parents and advocates need to network to gather contacts from around the state who can petition local delegates and senators to support the bill, especially those on the State Corporation Commission's mandated benefits commission, and the commerce and labor committees in the House of Delegates and Senate.

Marshall was able to recruit four volunteers from the crowd to serve as phone organizers for northern, southern, western, and the tidewater regions of Virginia, and encouraged everyone present to give their information to Pat DiBari, a Lansdowne resident whose grassroots efforts spawned the Autism Summit and who founded The Loudoun Project, an online community and resource for parents of children with autism.

"Has everyone given their name and number and e-mail to Pat here?" Marshall asked during his speech. "If you haven't done it, you have to do it before you leave the room. You will not be allowed to leave to room until you do so," he said, drawing much laughter from the audience.

James Lafferty, president of the Autism Advocacy Coalition whose son was diagnosed with autism at the age of two and has undergone ABA treatments, spoke to the crowd about his own experiences with autism.

Lafferty told the audience about the anger he experienced when his son's teacher told him that his son did not need speech therapy, because he could not speak, and the pride he felt about being able to drop his son off for the his first day of regular kindergarten this fall.

He agreed with Marshall's ideas for organizing people at a local level to help influence legislators when it comes to autism matters, saying the audience would "have to be ready for the fight of our lives."

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