Autism conference premiers in Park City
The U.S. Autism and Asperger Association conference debuted in Park City this week where attendees heard speakers on the subject of the diseases.
From Aug. 9-12, nearly 540 people from around the country converged at the Yarrow to network and learn about resources for those seeking treatment for autism and aspergers.
Shannon Kenitz, from Madison, Wis., addressed the attendees, and shared her story with them, which was heard on the Montel Williams Show last May.
Her daughter, Grace, was born with a rare disease that deprives the brain of oxygen, and the diagnosis was terminal.
Grace was blind, had a feeding tube, could not walk and many doctors predicted she would not live past the age of two. With the help of hyperbaric oxygen therapy, a treatment sometimes used for autism patients, Grace is now seven, her sight has been restored, she can eat on her own and, last January, she walked for the first time in her life.
Association founder Lawrence Kaplan said Grace’s story embodies what this conference is about.
"I want people to walk away and say, ‘Now I know there is the possibility that my child might be able to recover," he said.
While Kenitz said there are still challenges with Grace, her progress is credited to her hope things could improve.
Doctors once told Kenitz that she needed to prepare to help Grace die. She weighted 7 pounds when she was one year old. Now at seven, she weighs 50 pounds. Something Kenitz said never would have happened if she had given up hope. Even with Grace’s advancements Kenitz says there is still progress to be made.
"I believe that Grace is going to live a normal life," she said.
In the meantime, Kenitz has become the executive director for the International Hyperbarics Association, a group advocating hyperbaric treatment like Grace received.
Kenitz said one of her biggest goals is to be reimbursed by insurance companies for Grace’s treatment, which has totaled $10 million bill, she said. Her insurance company, she added, dropped her after paying $8 million and left her with $2 million in debt.
The hyperbaric treatment Kenitz advocates, she said, is also helpful for children with autism, another disease Grace was diagnosed with. Kenitz added it is rare for insurance companies to cover the cost of the treatments.
Other speakers at the conference addressed topics ranging from raising an adolescent with autism to defining the terms used in conversations about the disease.
"I wanted to bring together the knowledge to a very, very underserved population," Kaplan said.
Portions of the conference have been available as part of a live Web cast and Kaplan authored the book, "Diagnosis Autism, Now What?"
The book offers a variety of tips for parents raising a child with autism, a disease the National Institute of Mental Health says affects 3.4 children in 1,000 between the ages of 3-10.
"Be patient, don’t be overwhelmed and don’t try to do everything all at once," he said.
For more information about Kaplan’s organization and the conference, visit http://www.usautism.org.
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