How Should We Honor our Veterans affected by Autism?

To all the service members, veterans, and military families in the Autism Today community, I wanted to thank each of you again for what you do.  As our next conference, Autism Calgary, approaches (November 22-23 at the McEwan Conference Center at the University of Calgary), I am mindful of the special impact of autism on the military.

In Canada and the US, Veteran’s Day (or Remembrance Day, as we call it in Canada) is a day to honor the valor, sacrifices and excellence of our military.  On the most personal level, we mark the day by reaching out to family members and friends who risked all to secure our freedoms and make our unmatched quality of life possible.  For too many, the day is one for mourning, for lives lost – literally, or in terms of disability, mental illness and disrupted lives.

We celebrate on November 11th because that was the last day of “The Great War,” as people of the time called World War I.  What is poignant about that now abandoned moniker, to me, is that so very often, when tragedies happen in our lives, especially unforeseen ones, they seem impossibly big.  We simply cannot imagine anything worse than what has befallen us.  Yet, only 20 years later, European nations fell upon each other again, this time using even more dreadful weapons.  We stopped counting after the second “big one.”

Did you know autism affects military families at much greater rates than the civilian population? Autism has in increased astronomically in the past 20 years truly in epidemic proportions.  The Centers for Disease Control estimates autism spectrum disorders now occur at a rate of 1 in 110 childen in the US.  It is the fastest growing disability with 90% of the costs in adult services.  And in the military, the rate is shockingly higher.  One in 88 military children are born with some form of the condition. A Harvard study estimates the lifetime cost of services required by a person with autism exceeds $3 million.  Early intervention can reduce this 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.

Without resources, a family dealing with autism can feel their world has collapsed.  Imagine the military family confronted with a newborn child not yet even diagnosed as being on the spectrum.  Deployments, absentee parenting, travelling, always being placed on the bottom of wait lists, continual relocations and adjustments to new cultures all heighten the impact of this already poorly understood disorder on military families.  Children with autism have gigantic difficulties with transitions; they must have routine and structure.  Needless to say: autism, already a “great war” for a healthy, well-situated family, can be a kind of Armageddon for the military family.

What needs to be done?  I’m no expert in public policy.  I only know that if we do not address this crisis at the front end, the costs – in the form of institutionalize adults with undiagnosed and untreated autism, disintegration of families, substance abuse and even criminality – will be epic.  This is one reason I am such a believer in what Dr. Doreen Granpeesheh, founder of ACT for military families, is doing to help the real “war-zone” with the families fighting for the support they so desperately need for the autism diagnosis in their families.  That’s one reason we are bringing Dr. Granpeesheh to Calgary, Alberta along with Dr. Temple Grandin, David Kirby and Dr. Stephen Shore, next week.  Its time for families to get the well deserved attention and support they need.

As I think about my own experience with my son, it occurs to me we should think first about the “how” of the solution – those characteristics that will let us know we are on the right track.

  • Intervention: Neuroplasticity — the brain’s ability to be malleable and form new pathways, the physical work of learning — is at its peak under the age of five.  For this reason, early intervention is absolutely vital to equip the child with autism with all the tools necessary to live to his or her full potential.  Resources focused on early diagnosis and intervention would at least equip military families to understand their child’s condition and quickly adopt an integrated strategy for managing it.
  • Integrated: A fully integrated approach to therapy and treatment is imperative right when the child is first diagnosed.  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 strategy will include not only behavioral interventions, but nutrition, choice to vaccinate, exercise program, all closely tied to the child’s unique mental and physical characteristics and needs, and, of course, those of his or her family. The most important element of any of these interventions is that the practitioner is the key.
  • Instruction: We must grow a professional cadre of specialists in the care and treatment of families affected by ASDs.  Also, caregivers and family must all work closely with doctors, social workers and other professionals to fully understand autism, the way it expresses in their child or sibling, the special pressures a family member with autism creates (including difficult feelings ranging from resentment, to guilt), and the way the overall family dynamic must adapt to the needs of their special child, while securing the wellbeing of the family unit.
  • Intensive treatment:  Every child has different needs, and will require a different combination of resources.  Families need to know the “menu” of behavioral and biomedical options.  The American Academy of Pediatrics specifies a variety of treatments that have been found effective, including ABA, DIR, RDI, TEACCH, SCERTS, and PRT. There are a variety of biomedical therapies that appear to be promising.  Each family needs to know all their options, and experiment until they find the combination that works.
  • Inspiration:  Families affected by autism need hope, heroism and role models.  Nowhere is this more true than in the military.  There are a military mom long separated from her spouse by deployment, and her friends by relocation, is literally living on fumes.  Hope, love, and passion for her child – these are what keep them going.  They need their leaders’ recognition, support and – in pursuing solutions – their statesmanship.

When my son Jonny was diagnosed with autism, I did what any military mom does: I deployed. It was the early 1990s.  There may have been about a dozen good books on the subject, few specialists, and little in the way of reliable public health resources.  People did not even really know how to diagnose, or understand the incredible diversity of the autism spectrum.  Fortunately, we were financially secure, so it became my mission to know everything I could possibly know, and to share it.  Fifteen years later, I’ve authored 8 books, and manage one of the world’s most comprehensive, free sources of information about all aspects of autism, aspergers and other ASDs.  I believe my military training played a role both in my attitude and giving me the problem-solving, improvisational skills, and determination to get the job done.

My dad fought in Okinawa during World War II and his memory and service are dear to my heart.  I myself serviced in the US Air Force as a Medical Service Specialist at a base in Florida for about 5 years.  Like so many of you, I have good friends and family members serving in Afghanistan.  The sacrifices military families make are well known and, I think, better appreciated than they were a generation ago.  But we have only recently begun to talk openly about the mental health issues that bedevil entire families during a career in the armed services, their impact on military performance and quality of life, the ability of fighting men and women to return to normal productive lives, and the cost of mental illness on communities and economies.

To our military families struggling with the autism epidemic, we must honor Veterans’ Day with more than flowery oratory.  Autism needs to be part of this growing awareness of the mental health issues that impact our military differently than the rest of us. Our military leaders and elected officials must set the tone of a national discussion about this sometimes devastating condition, and the tragic impact it is having on our warfighters.  They must chart a path forward to equipping their soldiers and their families to adapt to the challenges of autism, and have access to the quality of life for which they make so many sacrifices.

With love,

Karen Simmons

Founder & CEO Autism Today

Chicken Soup for the Soul, Children with Special Needs

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