Army Families Battle Against Autism
June 4, 2009
- "He became so aggressive. He would hurt other kids. He would hurt me," Tubberville said.
- Tubberville started searching for the best treatment for her son. The family found that treatment in Huntsville with Carol Vancil.
- The Center for Disease Control calls autism an "Urgent Public Health Disorder."
- "The Department of Defense is on the cutting edge of all this," Jackson said. "There are people and organizations advocating for us."
When he was a baby, Jones Alexander Tubberville suffered from several ear infections and upper respiratory illnesses. His mother, Lori Tubberville, remembers the almost constant rounds of antibiotics that doctor's prescribed for her son's health.
But, soon after his first birthday, Tubberville and her husband, National Guard Staff Sgt. James Tubberville, noticed changes in Xander's behavior that went far beyond anything that an antibiotic could combat.
Their son often didn't respond to stimulation. He wouldn't willingly interact with his parents or older sister. He had uncontrollable tantrums and, at times, would shake his head repeatedly. He had very little language skills.
"I noticed he wasn't picking up words," Tubberville said. "He wasn't playing. He wouldn't look at you when you called his name. He wouldn't let me hold him or talk to him."
At 22 months, Xander had drainage tubes surgically placed in his ears. His parents hoped the tubes would lessen his ear infections and help him hear the words they so desperately wanted him to speak. But Xander's behavior worsened.
"He became so aggressive. He would hurt other kids. He would hurt me," Tubberville said. "He was screaming constantly. His screams were deep and agonizing. He'd throw himself against the wall and self-mutilate. He'd bite me and kick me. We couldn't even get out of the house because I was afraid of what he would do. His sister, Kiersten, spent a lot of time alone in her room away from Xander."
Tubberville's sister was the first who suggested that Xander might be autistic. Tubberville had her son tested and, with a diagnosis to confirm his autism, she started searching for the best treatment for her son. The family found that treatment in Huntsville with Carol Vancil, who has credentials from the Association of Behavior Analysis to provide one-on-one therapy for autistic children; and with Premier Collaborations Child Development Center, a preschool that provides services for autistic children that includes peer therapy and classroom inclusion.
"We sold our house and moved here from Andalusia," said Tubberville, whose family now lives in a small apartment.
"Since we've moved here, Xander is not the same little boy. He is trying to say words. He is counting to 10. He is now attending an inclusive class. He gives us hugs. I never thought he would get this better so soon."
At 3 and a half, Xander and his family are learning how to communicate with each other, despite the autistic barrier that often imprisons its victims in a world of little social interaction. The family is also relying on biomedical technology to control Xander's diet and its effect on his condition.
The Center for Disease Control calls autism an "Urgent Public Health Disorder." Autism is a spectrum disorder that typically begins to manifest itself from birth to as late as 18 months of age with decreasing verbal ability and social interaction skills with increasing repetitive behavior. It is estimated that one out of every 150 children will be diagnosed with an Autism Spectrum Disorder, which has no known cause. This rate has grown over the past 20 years by 10 to 17 percent each year, making it the fastest-growing developmental disability. Some military advocacy groups, such as Autism Salutes, place the incidence of autism in military families as high as 1 in every 75 births.
National standards from the American Association of Pediatrics for the treatment of autism call for early diagnosis, 25 or more hours of ABA (one-on-one) therapy per week and inclusion (peer) therapy. Besides therapy, other approaches used to treat autism include nutritional supplements, special diets, testing for food allergies, treatment of intestinal bacterial and yeast overgrowth, and detoxification of heavy metals from the body.
The Tubberville family is one of several local military families with autistic children who often meet to talk about how to overcome learning and social challenges of the diagnosis.
"The goal for all of us is for our kids to have independent futures and to be mainstreamed," said Chief Warrant Officer 3 Jim French, an Apache helicopter pilot stationed at Fort Rucker whose son, 6-year-old Brandon, suffers from autism.
The need to get the right care for autistic children is so overriding for military families that they often make career, family and financial sacrifices. The Tubbervilles were able to move to the Huntsville area, but James Tubberville makes a weekly commute to Montgomery where he works in National Guard recruiting.
Another local military couple -- Becky Jackson and her husband, Lt. Col. Billy Jackson -- currently live apart, with mom and son, 4-year-old Lucas, in Huntsville and dad, a Black Hawk pilot and aviation acquisition expert, in Washington, D.C.
"Luke is a full-time job," Becky Jackson said. "I'm so fearful of pulling up Lucas and transitioning him to another place, especially if I'm not convinced I can get the same services we get here. The teachers here have all learned about autism therapy. The other kids are taught early on about differences and compassion. This is a great environment for Lucas."
While the Jacksons have made the decision to live apart for now so that Lucas can get the therapy he needs, the French family has decided that retirement is the best solution for their family situation in Huntsville.
"Our goal is to be back together," French said. "That's the best thing for Brandon and for our other child, 10-year-old Tyler, and for my wife, Karen. But we will give up benefits."
French is retiring from active duty in the next few months. The decision will create financial difficulties for his family, including the loss of more than $25,000 in annual services because Tricare does not pay for autism services for retiree families. But French said his shift to a stable career that keeps him and his family in Huntsville will be worth it.
"Until we found the services provided here, everything else we tried with Brandon was too regimented, too strict and something he couldn't adhere to. He was receiving four hours of home therapy each day. But we feared he would become robotic and only do what he was told to do," French said.
"Each time we would talk about treatment, our goals revolved around his social skills. We had to find an environment where he could be around other kids and adults who would help with socialization."
In Carol Vancil and Premier Collaborations, the French family found a program that relies heavily on inclusion to help autistic children learn how to behave through modeling and playing. Brandon has two to three hours of one-on-one counseling each day and then the rest of his day is spent in the classroom with other children his age.
French's retirement not only gives the family freedom to live where they can find services for Brandon, it also frees them from frequent military moves and deployments that are often detrimental for autistic children who must have routine if their condition is to improve.
"When Brandon was born, we lived in Georgia. We noticed his lack of eye contact. But there was no testing available in Georgia, so we waited," French said. "When we were at Fort Rucker, we took him to a child psychologist who diagnosed mild to moderate autism. We were able to get speech therapy and a lot of support through the Army's ECHO program. But we really didn't feel like we found what Brandon needed until we came to Huntsville."
Often families - both military and non-military -- have difficulty facing the diagnosis of autism, even though early intervention helps to combat the disease.
"I first noticed that Luke might have a problem at 12 months when he had no words yet," Jackson said. "I got a checklist for autism on post, but I convinced myself to wait until 15 months before looking at it further. Then, at 14 months, I realized Luke had stopped looking at me ...
"At 16 or 17 months, we went to the University of Alabama at Birmingham where they had a six-month waiting list for treatment. We started paying for therapy at 22 months before we had a diagnosis that would allow Tricare to cover most of the expenses. When something like this happens, you're not thinking about the money. You're just thinking about your child and what he needs."
While there is no current cure for autism there are effective treatments which can help many children lead independent lives. Whereas most insurance companies and school systems do not provide these levels of early intervention that meet national standards of treatment, Tricare, under the ECHO program, is one of the few insurance companies that provides support to active duty members in some treatment areas.
"The Department of Defense is on the cutting edge of all this," Jackson said. "There are people and organizations advocating for us."
The Army also offers benefits through its Exceptional Family Member Program and Tricare, which provides funds for active duty military for ABA, speech and occupational.
In addition, Army Community Service can help with resources and early intervention programs, and provides funds through its respite care program for babysitting services so parents have time away from their child to take care of business or personal issues.
Support can also come from various community sources. Recently, the Officer and Civilian Women's Club provided the Tubberville family with $1,400 to pay six months of inclusion fees for Xander's therapy.
And science research is making inroads into understanding autism and providing new treatments for the disease.
"All of us are waiting to see what happens with inclusion," Jackson said. "So many kids have autism that we will probably see a difference in mainstreaming kids in the future. We want our children mainstreamed because they need the social interaction. But at the same time we don't want anyone to get hurt."
There are many organizations that provide support, information and advocacy for autism children, and that are researching the causes and treatments of autism. Those include Defeat Autism Now and Autism Resource Foundation (http://theautismresourcefoundation.org). The website for Military Salutes, a blog fun by servicemembers concerning autism, can be found at http://www.austismsalutes.com.