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 The day autism was made into a fool - 4/22/2011
Autism in today's military

Posted 4/1/2011 Email story   Print story

    


Commentary by Maj. Nicholas J. Sabula
Defense Media Activity


4/1/2011 - ALEXANDRIA, Va. (AFNS) -- The second of April has special significance for my family -- one year ago I was transitioning out of Afghanistan and returning home to a family I had not seen in seven months. What kept me going through the deployment was not just the important mission, the camaraderie, or the fact that I was looking forward to some down time upon my return. It was that I could get home and see my heroes.

These heroes are my family. One of our sons, who happens to have autism spectrum disorder, is my inspiration. My wife is a true unsung heroine, like other military families raising a child with autism, fighting a daily battle on the homefront for our children. I view World Autism Awareness Day as an opportunity to recognize the tremendous sacrifices of these "Autism Warriors".

Autism is a neurobiological developmental disability that impacts normal development of the brain in the areas of social interaction, communication skills and cognitive function. The word 'autism' comes from the Greek word autos, meaning 'self' and children with the disorder are often described as being in their own little world, typically having difficulty with social communication such as eye contact, interaction or conversation.

Children with autism may give the appearance of a dazed, cold, unfeeling or even unintelligent individual to people who don't understand the disability. The truth is that under this dark cloud is actually a smart, smiling, beautiful child just wanting to break out. Others may show no distinguishable characteristics other than quirkiness, inability to focus, appearing shy, or even the other extreme of sensory seeking, hyperactive, and surprisingly overly social.

Autism affects military families, your coworkers, people you supervise, or even someone you work for. Like the military represents a cross-section of America, so do families with autism; it does not discriminate.

It seems somewhat ironic that as an Air Force public affairs officer communicating stories for the Department of Defense, I have a son who has challenges communicating in general. I see his frustration, but his diagnosis has emboldened me to better support all military families who share our story.


Looking for signs

I had no clue what autism was when our son was diagnosed in 2006. It was my wife who pushed us to seek professional help. Being our first child, I just figured it was a stage, but the old adage that he or she is "just a slow learner" can be a signal something is wrong.

Our son was developing normally until about 16 months. Things changed as he gradually regressed from saying about 20 words to just babbling, spontaneous screaming, looking off into space and not reacting when spoken to. We thought it was because of the birth of our second son at this time, but soon realized there was something serious going on.

One tell-tale sign of concern is what autism families know as stimming, or self stimulation in a continuous, purposeless movement. Flapping hands or twisting a spoon or pen; rocking; lining up objects; echolalia, or repeating exactly what is asked instead of an answer; or staring repetitively at an object are pretty easy to spot. Not making eye contact, talking, or interacting with other children are also areas for concern.

If you suspect something is wrong, make an appointment to talk with your pediatrician about an assessment. Research shows that taking the initial step of getting your child diagnosed early has a dramatic impact on results; the sooner intervention begins, the better.

If your child is diagnosed with autism, your next step is contacting the Exceptional Family Member Program office for enrollment. EFMP maintains accountability of military families with special needs and can have a tremendous impact on future assignments to locations with support. I have had orders made and canceled based on the gaining location's ability to support him.

Getting to know your EFMP coordinator can go a long way in possible avenues for care at your location and make it known to them that you have questions and concerns. They can also provide feedback on the enrollment, required to sign your child up for TRICARE's Extended Care Health Option that will help cover a type of therapy called applied behavioral analysis.

What now

It really comes down to the basics of knowing your child, getting educated, seeking answers and establishing a treatment plan. Autism is not a cookie-cutter diagnosis. The challenge for parents is every case is different and requires different treatment plans; the road ahead is tough and you need to think long-term.

To say it can be overwhelming is an understatement. Autism, like many other special needs conditions, creates additional requirements -- many times unforeseen to your peers since you try to not bring issues to work with you. It has taken a toll on finances, family and career. That's reality, but as a military family you get over it and press on.

Having a child with autism changes you in so many ways, but strengthens you in ways you could never imagine. This strength becomes an asset for the realities of service.

Military life can be particularly difficult for children with autism and their families. Children with autism need structure in their lives, and while the military focuses on structure and order for mission accomplishment, this doesn't always correlate to the home front.

Stressors the general public typically don't have to deal with such as deployments, temporary duty assignments, permanent change of station assignments every few years or less, exercises and so many other requirements can take a toll on these families, since autistic kids have such a hard time adapting to change. When we moved last fall it was our fourth move in just over five years.

The military stresses providing a unit support system, when you have a special needs child it creates challenges for people who want to be supportive; not knowing how to approach parents and exactly what support to offer can act as a buffer against such volunteerism. This is where communicating these special family needs and helping people understand can pay dividends.

Talking with leaders in your organization might seem difficult, but is necessary to help communicate concerns. If they aren't aware, they can't help you. For commanders and supervisors, better understanding of autism's impact can potentially reduce or eliminate domestic issues affecting the unit.

Get informed

Education is one of the most important aspects of being a parent of a special needs child. Learning about the signs, symptoms and options will be integral to your child's recovery.

In learning about and experiencing my son's condition, I've been exposed to a great number of scientific topics, from chelation to sensory issues to oxalates and yeast. I never realized the impact of diet and therapies, and understanding challenges such as gastrointestinal problems, food sensitivities or sensory issues leading to what are called meltdowns. These may not be readily apparent to most people, but learning how the smallest thing impacts your child gives you a new perspective.

Surrounding yourself with people going through the same thing can have a profound impact on the type of care you give your child. Online forums, local support groups and base resources provide a great means to talk about your issues, learn new options, and information. On Facebook, a quick search for "military autism" can help find a support group.

With April also being recognized as the Month of the Military Child and National Autism Awareness Month, it's especially important to recognize the challenges our children face; the sacrifices of our warriors: the mothers, fathers, family members and supporters of these special children; and the hope that we will one day recover all our children from this pervasive disorder. Our heroes deserve no less.



tabComments
4/26/2011 2:54:42 PM ET
Interesting recent article on autism the New York Times.
BC, Texas
 
4/19/2011 12:29:39 PM ET
The research into special diets is not promising for it being a silver bullet. Other research is suggesting that special diets help with dietary issues that often occur in autistic children rather than the autism itself.
Analyst, Barksdale
 
4/16/2011 6:28:09 PM ET
Clay, you say that special diets and chelation lack evidence-based support. Have you ever heard of an organization called Autism Research Institute or Talk About Curing Autism? Maybe you should check them out. Many parents have seen signifcant improvement in their children on the autism spectrum after they've obtained some of these treatments. The fact of the matter is that children on the autism spectrum do not digest their food down to the lowest level possible and therefore do not absorb the nutrients their bodies need. This is why many of them are found to be deficient in vitamins and minerals. Other children who have had chelation therapy -- removing excess metals from the body -- has seen reduction in stimming and other undesirable behaviors.
Heather, Northern Virginia
 
4/7/2011 9:36:03 PM ET
I suspect that I have Asperger's Syndrome from researching the symptoms and my own issues from my 22 year career in the USAF. I've always been a social misfit who just likes to be alone and focuses on dates and loves to look at maps and collect Airline Flight Schedules. My last job was scheduling aircraft for DV transport at Scott AFB.
Alan, Illinois
 
4/7/2011 9:32:34 AM ET
Great article Major. My wife and autistic son are my heroes also. I am very grateful that even though nobody wants to hear their child has autism our son's physician at our last duty station had the guts to say it and not give the slow developer excuse. This was critical because we were able to do all the things you pointed out in the article. My son started ABA therapy at age 2. For all the bashing Tricare receives the coverage they provide for autism treatment is excellent. I fear in today's budget environment insurance coverage and state's treatment services are going to be drastically reduced. It breaks my heart to think of all the children who would benefit from treatment but never receive it because of money. I pray that my son and all autistic chidren will continue to make progress so that one day they can live an independent productive and happy life.
Kevin, California
 
4/5/2011 11:18:28 PM ET
Great article. I too have a child with autism and an older stepdaughter with Asperger's Disorder. The only exception I would make to the article is the author's reference to special diets and chelation as scientific. These treatments lack evidence-based support. However, Applied Behavior Analysis therapy is based on science and has been proven to be effective. TriCare through their ECHO program will pay for this for active duty members. This is well worth obtaining. For our daughters it has been the one thing that made the difference Also be aware that the EFMP program is not just there to prevent you from being assigned to areas without autism support but can also move you to areas that have that support. If I had known that back in 2006 I would have applied for an EFMP reassignment in a heart beat, having lived for a while in an area with no support.
Clay, Randolph AFB Texas
 
4/4/2011 6:07:00 PM ET
Raising a child with autism is tough. Being a military member with an undiagnosed ASD is even tougher. Got a super performer who just doesn't seem right socially? Ask him or her if they've ever been evaluated for Asperger's Syndrome.
Retired E7, CONUS
 
4/4/2011 9:59:41 AM ET
Maj. Sabula, Thank you for a wonderful article. My son too is Autistic, one of the happiest kids you could ever meet. I 100 percent agree that people normally don't understand kids with Autism nor the impact it has on the family. You mentioned that your wife is an unsung heroine and I feel the same way about my wife. She has done a wonderful job and we have been VERY blessed with the school system here at my duty station. Thank you for sharing your story.
Joe, SA
 
4/2/2011 2:44:33 AM ET
Major Sabula - Has your son been tested for Fragile X Syndrome? Too many health professionals reach the autism diagnosis and never test for FXS. Fragile X Syndrome is the most common cause of inherited mental impairment and the most common known cause of autism or autistic-like behaviors. More information can be found onliine.
TSgt Shannon Gatewood, Lackland
 
4/2/2011 12:51:45 AM ET
First and foremost I want to extend my utmost gratitude to Maj. Sabula for writing such an informative and prospective article on Autism. Growing up with a younger brother with Autism, I have seen the frustrations and struggles of having a child with Autism. The military family with an Autistic child faces many unique and different struggles than those of the average family, which can make it harder for the family to cope. While Autism may still be a relatively new development and trying factors for the military, it is nice to see that the information is being relayed to those who are not familiar with the term. My thanks goes out to those families fighting the fight and broadening the perspective of others. It is a heartwarming feeling to know that one does not have to face a life even like this alone and that they have the support of their unit and team.
Kristina, England
 
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