Targeting Military Autism Families For Success

As founder of Autism Today, world’s largest autism website, mother to a child with autism and another with a NLD and ADHD, plus four other children, I know autism!  Also, as a former USAF Medical Service Specialist stationed at Tyndall Air Force Base Florida, a father in the Army stationed in Okinawa during World War II and most recently, a nephew in the army in Afghanistan, I know how troubling life can be, especially for military families.  Adding to that challenge by having children diagnosed with autism further complicates the lives of those in the military.

Autism has in increased 6,000% in the past 20 years affecting more than 1 in 150 childen.  It is the fastest growing disability with 90% of the costs in adult services. Since neuroplasticity, the brains ability to be malleable, forming new pathways, is at its peak under the age of five, early intervention is the key to the best lifetime prognosis.  By intervening appropriately at this young age, the cost of lifelong care is decreased by 2/3. Early detection, diagnosis and intervention, save billions of dollars in adult care and dramatically improve quality of life for all concerned.

There are many exceptional challenges facing military familites who have children with autism.  Their needs differ from those of civilians such as constant deployments, absentee parenting, travelling, always being placed on the bottom of wait lists, continual relocations and adjustments to new cultures make this misunderstood disorder even more complex.  

Children with autism have difficulties with transitions and need routine and structure.  How can the constant changing of support workers who work with children and familites be good?  Other difficulties surrounding autism include the inability for children with autism to communicate their needs effectively.  A reaction to their environment or a change in routine may result in negative behaviors and inappropriate social actions. When these factors are combined with everything else it’s a recipe for disaster; especially in light of this disorder.

A fully integrated approach to therapy and treatment is imperative right when the child is first diagnosed.  This would include recommended behavioral interventions with consideration around nutrition, choice to vaccinate, exercise program as well as the assessment of the child physical state. The goal of behavioral, developmental, and other educationally based interventions is to change a child’s behaviors by working on their communicative, cognitive and social skills, thereby improving autism symptoms rather than to cure autism.  The most important element of any of these interventions is that the practitioner is the key. They must be proficient in their work while remaining flexible and sensitive to the child’s needs. To constantly change practitioners can be quite problematic as families move to different bases.

The government needs to do whatever it can to accommodate the families serving our country which would include adequate funding for appropriate early intervention based on the particular needs of each child and their family.  Intensive treatment for autism is required to achieve the best possible outcome.  There are a number of interventions endorsed by the American Academy of Pediatrics and clearly all should be made available to all military families.  These include ABA, DIR, RDI, TEACCH, SCERTS, and PRT. Additionally, there are developmental, educational and biomedical interventions that could also be beneficial because children with autism have many underlying medical problems.

Easy access is another important key for families to receive the support they need from wherever they are.  The entire family and support workers need to be taught how to deal with severe behavior, communication issues and especially social and life skills.  Huge gaps exist in the allocated funding for early intervention, proper training for support staff, as well as training and support groups for parents.  Finding enough properly trained educational & developmental Intervention Support personnel is extremely challenging especially to work for the money offered by the military.

While bases have made great strides in creating programs where families can discuss issues and concerns their children with autism face, actual solutions need to be sought and implemented.  Perhaps bases are different than those on in the US, I am certain that most of the challenges face all the military famillies worldwide. The National Defense Authorization Act to allow the Secretary of Defense to develop an assessment of services and programs available to military families while making improvements as necessary sounds good in theory, however, action needs to be taken to solve the problem, not simply talk about solving it.

We have reached out to parents in the different branches of service and the feedback we have received continually is that military families of children with autism are in crisis.  They don’t feel like they are listened to, valued or taken care of. Whether it is the lack of access to early intervention, inadequate funding, family support, sensitivity to the autism issue or the fear that if they step up to request certain types of support, such as is offered through the Exceptional Families Program, they might not be considered for promotion;  the needs are big. The stigma still exists for all branches of service though support levels vary depending upon the branch of service.

Specific concerns expressed by one of our concerned military families with two children with autism was that since the support staff are paid the equivolent of welfare rates, or one-third of what civilian insurance re-imbursement rates are, many won’t serve military clients.  This coupled with having to re-educate all the health care professionals along the way from base to base make it impossible to receive care. She mentioned that The Extended Care Health Option (ECHO) Program currently has over 13,400 military dependent children who have been identified with autism, but only 1,300 of those children have been enrolled into the ECHO program. Acceptance into the ECHO program takes a long time and is difficult to get into, though it is the only way children with autism are able to receive medically necessary and medically prescribed treatment.

She pointed out that in March of this year the Autism Services Demonstration Project was implemented. Since that time it has undergone two re-writings, and is currently undergoing a third.  Only one of the many issues was addressed even though the National Defense Authorization Act of 2008 allowed the latitude to address many more urgent needs and treatment requirements for military dependent children with autism, and the latitude to do so immediately.

The NDAA '08 states that "The applicable military department concerned may establish local centers on military installations for the purpose of providing and coordinating autism services for eligible dependents.The military department concerned is encouraged to enter into partnerships or contracts with other appropriate public and private entities to carry out the responsibilities of this section." There are organizations who’ve been ready to partner and contract with TRICARE Management Activity to expand the Autism Demo Project, and provide and coordinate autism services. This contract would have expanded the Demo, and expedited services and treatment that a large population of the military dependent children with autism could have received. The Autism Demo Project was rejected by higher military personal for reasons unknown even though this program would have provided so many children with access to medically necessary treatment. Most importantly she points out that it is imperative for children with autism to receive the medically necessary care they require and that it is imperative for the readiness and retention of the All-Volunteer Armed Forces

There are organizations who’ve been ready to partner and contract with TRICARE Management Activity to expand the Autism Demo Project, and provide and coordinate autism services. This contract would have expanded the Demo, and expedited services and treatment that a large population of our military dependent children with autism could have received. The Autism Demo Project was also rejected by higher military personal for reasons unknown even though this program would have provided so many of these children with access to medically necessary treatment.

Autism Today’s goal for military families who have children with autism is targeting military autism families for success.  We are doing this by partnering with Keri Bowers of Normal Films to provide power tools entire special needs families can use today and tomorrow to improve the quality of daily living.  Through her program, “Mapping Transitions to Your Childs Future” families embrace these new strategies so they become a natural part of the Family Care Plan essential to military familes.  “Mapping Transitions to Your Childs Future” provides in depth and specific life long strategies and critical knowledge for familes transitioning through a family care plan.  My family of eight has had first hand experience with Keri’s program which is why I was so excited to implement it into what we do at Autism Today. The experience allowed each member of our mixed culture, multi-dimensional special needs family to see each other’s strengths and accept each other for whom and what we are, honoring and respecting each other’s differences and uniqueness.  

We also work with members of the senate and congress, as well as other government officials, through correspondence, education and resources such as books, conferences, programs and services to support and educate them about the needs of the military personnel who have children with autism.   

It is our most sincere hope that the military tackles this challenge of quality care for our families serving this great nation. These families need to have the necessary supports in place for their children with autism so the service member  can be on the front line without worrying about their children and families back home. It is our responsibility as the great nation that we are to ensure these families are well taken care of.