FORT LEAVENWORTH, Kan. (April 8, 2010) - Research of special education on post shows the Fort Leavenworth school district has a higher instance of children with autism spectrum disorders than surrounding Kansas schools.
The percentage of students with such disorders on post is about 1.28, while the state average is about .47 percent.
Department of Defense statistics show this trend is similar nationwide - autism occurs in about 1 in every 110 children in certain parts of the United States, but about 1 in 88 for children in military families, according to a 2008 U.S. News and World Report story.
Jennifer Burford, Exceptional Family Member Program manager for Army Community Service, said there are many resources available to Army families who have exceptional family members with autism.
Burford said identifying, treating and coping with autism can be difficult - especially with the amount of paperwork involved - but ACS helps Army families navigate through the process.
"The entire process can be extremely overwhelming to the parents, especially when they've got that gut feeling that something is wrong with their child," Burford said. "Then, receiving news that their child has an autism spectrum disorder - it's devastating to the family."
Munson Army Health Center also has an EFMP coordinator, Mary Mathia, to assist Army families.
"I'm the human service bridge to the medical side of the house, which is (MAHC) EFMP," Burford said.
Ideally, Burford said research shows children with autism spectrum disorders who receive a diagnosis at 18 months of age have a better outcome. There is a list of developmental milestones that children should reach by a certain age at www.cdc.gov/ncbddd/autism. Burford said things to look for in children include not responding to sound, avoiding eye contact, echoing words or phrases, difficulty interacting with others, no real fear of danger and insensitivity to pain. Children might develop normally and then have a sudden regression, she said.
"Moms usually know something's wrong," Burford said. "But some are told it might be something else ... but Mom is usually right on."
If children are having developmental delays, parents can request some type of assessment or complete evaluation, Burford said. The first step is to discuss the problem with a primary care manager. Burford said doctors would rule out other possibilities before autism, such as hearing loss or another developmental disability. If the primary care manager determines more assessment is needed, they will refer the family to a pediatric developmental team. The family receives a referral in the mail.
Burford said there is a delay of four to nine months in getting the initial consultation, even in the Kansas City area where there are many resources for families with autistic children. Families on post are typically referred to either the University of Kansas Hospital or Children's Mercy.
In response to needs of families, Fort Leavenworth and MAHC partners with KU Medical Center twice a year in the spring and fall to conduct outreach clinics assess children. In March, the clinic assessed six children. The clinics are done through a special grant, and Burford said the family doesn't have to get a referral and insurance is not billed. The clinic serves as the initial consultation.
Once the child is diagnosed, Burford said parents should enroll their child in the Army EFMP program so they are able to receive services and support. She said even if the child or family member is already enrolled, parents could update that information with the autism diagnosis. EFMP has activities such as monthly bowling and Camp Soar every summer to connect post families and their exceptional family members. EFMP also ensures that Soldiers are assigned to duty stations where their exceptional family member can receive services.
EFMP enrollment allows families to enroll in a special health insurance option called TRICARE ECHO, or extended health care option. ECHO will pay up to $36,000 for applied behavioral analysis. ABA is recommended for autistic children, Burford said, and some doctors ask for up to 40 hours a week for the child. The therapy can cost up to $150 per hour, so ECHO can be a huge benefit to these families.
She also said it's not uncommon for parents to go through a grieving process upon learning their child has autism. For the caretaker or parent who needs a break, EFMP enrollment also provides respite care. Through this program, a licensed professional will provide the exceptional family member with enrichment activities so that the caregiver or parent can take a break. Burford said the respite care program is not just for children.
The Leavenworth County Special Education Cooperative provides education services for children with autism on post. Judy Denton, the co-op's director of special education, said services for autism have changed in her 35 years of teaching. At one time, educators rarely had a student with autism. Today, Denton said, there are more children with autism in the Kansas City area. She said this is partly because of more specialists who serve them and partly because of advances in medical knowledge.
"The more research that is done, the more we can learn about circumstances, the more knowledge we have about the area, leads to a higher diagnosis rate," she said.
Denton said laws require that teachers try other techniques before placing a child in special services. Within the co-op, there are two autism consultants who serve the county. Some children function well inside classrooms, Denton said, others don't. The co-op has structured learning classrooms for such children, and one of these classrooms is at Patton Junior High School.
Burford and Denton said without research, there's no way to know what causes a higher instance of autism in military families - whether it's from a better reporting system or more services available or another reason - but there are many sources to help families.
"If we take care of our families, then they can focus on the mission," Burford said, "whatever that mission is."
Parents can learn about services by contacting Burford at ACS, 684-2871, or by attending an autism town hall from 4-5:30 p.m. today at Munson Army Health Center.
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