by MICHELLE LEE
Through the Hawaii Autism Foundation, proper treatment is more accessible than ever.
WHEN FILM PRODUCER JULIANNE KING AND HER CIN~ EMATOGRAPHER HUSBAND, DON, learned that their three-year-old son, Beau, had autism, they did what any good parents would do: they started researching.
“When you get the diagnosis, oftentimes there is not a support system in place,” says Don. “fie doctors you see may not have the treatments to help, so they say, ‘good luck’ and send you out the door.”
Due to the fact that in recent years the number of children diagnosed with autism has signiflcantly increased, limited resources toward researching and treating the spectrum disorder present a weighty problem. Today, autism affects nearly one in 88 children, including one in 54 boys. Approximately one to 1.5 million Americans live with autism-making it the fastest growing developmental disability, with a 10 to 17 percent annual growth rate.
“It was such a sudden rise in numbers that there was no infrastructure to deal with the disorder,” says Julianne. “fius began our journey searching for healing and support.”
Soon after their son’s diagnosis, Don and Julianne started a monthly support group at their home for parents of children with autism. In 2007, group members founded the Hawaii Autism Foundation (HAF)-a 501(c)(3) nonproflt organization that provides fund-raising support to educate and help families flnd and fund treatments for autism spectrum disorders-where Juli-anne serves as the foundation’s president while her husband serves as its secretary.
Since its inception, HAF has helped bring mainland autism specialists to Hawai’i for consultations, awarded scholarships to cover treatment costs not covered by insurance and implemented numerous programs to find out the specific underlying medical conditions for each child.
“When our son Beau was nine years old, he started biting his hand, so we flew him to the mainland to see a gastroenterologist who only sees children with autism,” says Julianne. The Kings learned Beau had colitis and acid reflux. Soon after they began to give Beau the correct medication, his hand-biting behavior stopped.
“Instead of medicating all children with autism with something like an anti-psychotic drug, it’s important to find out what the underlying medical conditions are,” says Julianne.
“It is difficult to treat kids with autism because they cannot express themselves as to what is really bothering them, which is why it is so essential to have specialists who are trained and can get past that lack of communication,” adds Don. “The public’s attitude is changing now that we can see kids are improving with treatment,” says Don.
By creating financial support for parents to receive medical treatment for their autistic children, HAF aims to foster a future in which a person with autism can possess the necessary skills to work after finishing school. “If you have early intervention while the child is still neurologically developing, you have the chance of getting them independent enough so they can read, talk and be socially trained,” says Julianne. “There is going to be a new wave of kids graduating and the infrastructure to support them post-graduation is not out there.”
Equally as important as providing sufficient and correct treatment for children with autism is supporting the families behind them. “You need to support families holistically, meaning body, mind and spirit,” notes Julianne. “Dealing with autism is so stressful financially, spiritually and emotionally. Our foundation is trying to create support for all those facets, not solely the medical needs of the child.”
One such avenue of support is a proposed collaboration between HAF and Kailua’s YMCA in which parents of autistic children can have a support group as well as participate in various exercise activities such as swimming with their children.”
Part of an initiative called “Caring for the Caregiver,” the program hopes to strengthen family bonds and alleviate stress. “Oftentimes when parents have a child with autism, they completely let go of taking care of themselves physically and mentally,” says Julianne. “Our hope is that programs like the YMCA initiative will create strength and get families to a point where they feel balanced.”
Despite the countless obstacles and sources of stress that come with raising a child with autism, Don and Julianne are able to radiate not only a positive, but also a pro-active attitude. “This is the most extreme parenting,” says Julianne. “It has influenced our lives so tremendously and has really brought out the advocate in us.”
“The people make all the difference,” adds Don. “Working with kids diagnosed with autism is one of those areas in which the people involved not only have to have the expertise, but also have to have the right personality traits. Many kids initially do not want to comply, but it is amazing to see how these specialists are able to get them to cooperate, progress and open up.”
Those wanting to hear more about Don and Julianne’s personal journey with their son Beau can view Beautiful Son, a documentary produced and directed by the couple in 2007. “As a parent I felt there was not enough information out there and when we connected with other families and specialists really trying to figure out the biology behind autism, we realized this was an issue people needed to know more about.”
For more information go to www.hawaiiautismfoundation.org