CAMP LEJEUNE, N.C. - My son has autism. There, I said it – not easy for a Marine and a proud father. More specifically, he has Asperger Syndrome. Some call it a disease, but it’s not. Let’s make sure that is clear up front. People can’t catch it just being around him.
He is not a freak or weirdo, at least no more so than you or I. He is a young teen, working through the difficulties of puberty with the added bonus of learning, understanding, teaching and dealing with his relatively new diagnosis.
Every parent looks at his children through rose-colored glasses. We can’t always see their imperfections because we don’t want to believe they have imperfections. It is not until we remove our glasses and allow ourselves to accept the reality that our child may be “different” in some way do we let our guard down and do one of two things – deny or fight.
I’ve chosen the latter because my son has chosen to fight against what society views as different, to make them aware, in his own way, using the means he is just now learning to understand. I, on the other hand, have more resources and tools in my life toolbox.
I want to speak to the world to be his voice, his advocate, his sword and shield. One day he will be his own sword and shield. Until then he can rely on me to make sure the world knows that even though he may be a little different on the inside, he is as perfect as you are, as perfect as your children, as perfect as any person walking this Earth.
For those who do not know or understand autism, here are some startling facts.
Autism is now being diagnosed in one out of every 88 children in America, according to the U.S. Center for Disease Control and Prevention. More specifically, boys are diagnosed at the rate of one in every 54, a number that is 10 times greater than 40 years ago. The CDC has gone on the record as declaring autism as an epidemic.
By comparison, autism affects more children in the U.S. than diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy or Down syndrome – combined.
Part of this new found epidemic is because of better diagnosis techniques and awareness campaigns within medical professionals and through organizations such as Autism Speaks.
I am sure there are many parents who will say “no way” and that this is just because pediatricians and parents are looking to explain away a child’s behavior. Being a parent of a child with AS, I assure you, we weren’t looking for a reason, and we fought hard not to label our son.
However, after many years of working with him and with therapists and teachers and caregivers, we allowed him to have the more intense testing and understand more of the complex make-up of our often-misunderstood oldest child.
I was deployed in Helmand province, Afghanistan, when I found out my son had been officially diagnosed with AS. As a parent, I felt helpless. I don’t say hopeless because I know there is a sunny-side to all of life’s problems, you just have to get to the point you can turn the situation over and find it.
I felt helpless because I wasn’t there to hold my boy’s hand. I wasn’t there to hold my wife’s hand. I wasn’t there to be the reassurance I knew they both needed. My son needed to know that I would do anything for him, help him learn about AS, help him understand it, and help him work through everything and develop the skills to beat it.
All I could do was write an e-mail or try to talk on the phone or Skype (always a challenge when there are three boys in the house, all wanting to see me at the same time and tell me about their lives – we all know those computer cameras and screens are only so big).
I couldn’t be there to just put my hand on his shoulder, give him that little physical touch I know that helps him relax, remain calm and reassure him that it will all work out.
I felt helpless for my wife. Not only did she get this news that we probably knew deep down, just weren’t ready to accept, but she had two other boys that she needed to care for and tend to while I was half-way across the globe, nine time zones away.
Lacrosse and soccer practice, Cub Scouts, Boys Scouts, after-school friends and weekend birthday parties all still needed to be taken care of, but they couldn’t receive the attention they deserved. She and my son needed to deal with this new wrinkle in life. It was overwhelming for them both, and the stress could be felt by the younger two boys as well.
I was helpless to do anything about it. I’m a fixer and I want to fix things immediately, and by being stuck in Afghanistan, I couldn’t fix my family. I couldn’t fix the parts of my life that meant the most. There were four people in the world who needed me and needed my special ability to fix it, and the moment they needed me most, I wasn’t there – I was helpless.
What a lonely feeling it must be to receive this diagnosis, I cannot even imagine. As a young boy, to not have your father, a “tough” Marine at that, there to give you that hand on the shoulder or that smirk and silent acknowledgement that “everything is going to be alright. I’m not going to let anything hurt you.” It had to be almost devastating to my son.
What a lonely feeling it must be to be sitting with her oldest son, the one who is so much like her it causes friction at times, to be there listening to the doctor tell you, tell your son, that he is now different according to societal norms.
Wanting to be strong for her son, to have to play both mother and father and wanting to scream at the heavens “why” and cry and be vulnerable, but knowing she had to be the one to carry on and push him through it.
She had to take more time with her oldest son to learn and understand about this new diagnosis, yet balance that with the equal time for the other two very active sons whose schedule in itself is a full-time job. Add to this the loneliness that there just aren’t that many people who understand autism, let alone Asperger Syndrome.
How do you talk about it in a combat zone? Who do you talk to about it? Are there others who deal with similar issues? Does the Marine Corps even understand? Does the Marine Corps have programs in place, do they have people available, do they know what services are required and can they provide them to me in a combat zone, to my son, my wife and my other boys?
In the spectrum of epidemics and world-threatening diseases, how much do we know about autism and AS? And if the medical world is still struggling to understand it, how can I expect the Marine Corps to empathize with me and help me understand and help me help my family?
They say it takes a village to raise a child, and putting our pride aside, my wife has leaned on the entire village to help raise not one, but all three of our boys so she can focus on our oldest and help him, understand him, teach him, and develop him, for him and with him.
It takes a lot of energy, and each day I am not with my family is another day I feel more helpless and not the fixer I know I’m supposed to be.
As parents, my wife and I may have actually been part of the problem, not the solution, for many years. I think we didn’t ask all of the questions because deep down, we didn’t want the answers.
We didn’t want to allow someone else to pigeon hole our son; however, in retrospect we may have done just that. We allowed teachers, counselors and his peers to pigeon hole him and use that against him, all while we didn’t want to acknowledge it, buy into it or believe it.
I’m sure we aren’t the only parents who feel that way, so if anything, I hope other parents who read this will allow themselves to let go of their pride and be part of their child’s solution, not their problem.
My son is a complex young man, wrapped in hormones, surrounded by a judgmental society, learning to deal with the curve ball life has dealt him and only recently being able to put a name or a reason to his symptoms.
He was diagnosed less than a year ago, only after strong urging from his therapist – someone he has seen for several years, someone he trusts implicitly, and someone who has watched him grow. His therapist asked the difficult questions, and, as some of his behaviors became more prevalent, pushed us to ask more questions and seek more answers in an effort to help our son feel “normal” and be “normal.”
Once my son learned about AS, he began to understand more why he wasn’t as good at team sports and why he always wants to be the one in charge, yet doesn’t like to accept responsibility for team failure.
He knew he was a smart kid, always has been. He often didn’t really listen in class because he didn’t feel he needed to since he picked up math, science, reading and comprehension just by looking through the book. While the rest of the class was learning how to add one plus one and get two, my son was already understanding the concepts of two times two making four. In his mind, class is beneath him because he gets it. Even today, he has difficulty with doing high school homework because he knows he can ace the tests.
We struggle with getting him to understand the game of high school – that the schoolwork and homework are parts of the game and that tests are only a small portion. We constantly work to help him understand that every aspect of the game is a means to an end where he will get to move on to college where less is required, yet more is expected.
It’s a daily grind, often ending in raised voices, teenage attitude and hurt feelings. In the end the work gets done, but not without some sweat and tears.
And we haven’t even touched the tip of the iceberg of his recent life. His emotions are often on a hair-trigger, a symptom of AS. A situation that most would find to be insignificant can be a major ordeal for him.
He remembers events that upset him long in the past and at the most inopportune times. It doesn’t take much and when it does, an emotional roller-coaster ensues, not just for him, but for the entire family.
Routines, black-and-white rules, fixation, having to complete a thought no matter how long-winded, detail oriented and irrelevant to the topic at hand may be, and little ability to be flexible when events or situations do not unfold the way they were originally discussed or supposed to be in his head, all make for some difficult, emotional and mentally and physically exhausting days, not just for him, but for his brothers, his teachers, his friends, his primary care providers, his mother and, from a distance, me.
My purpose in writing this isn’t to evoke sympathy for me, my son, my wife or my family or to place blame on anyone or any organization because of my son’s autism. My purpose in writing this is to help others understand and let others know that my family isn’t unique.
This epidemic has probably impacted a family near you, and it requires our society as a whole to learn and understand and have empathy for those who must fight the fight day in and day out.
In the past, because so few people knew about or understood autism, families were often dismissed.
Even today, as more and more families are faced with this new epidemic, there is still very little our services family programs know about and understand.
We need more education, better education, not only for our senior leaders and decision makers, but throughout the Corps, the other military branches, the Department of Defense and our government.
Every leader, Marine Corps or commercial enterprise, stresses the family as essential to company success and growth, however more often than not these same leaders do not have as diverse a knowledge as they would like.
This needs to change now and our organization, as a whole, is responsible for making this change both positive and substantial. More resources are required to develop programs that help families.
Even at a base as large as Camp Lejeune, the services required to help those diagnosed with AS or autism is not as significant as it should be for an epidemic and the services to help the families are even less.
Schools, as a whole, have some programs for “special needs” children; however, even our schools are not adequately equipped for this new epidemic. For an issue that affects one in every 88 children in America, we do not have the appropriate resources to combat the growing spate.
Of course, more resources requires more funding, and in the grand funding scheme, autism receives less than 0.6 percent of the National Institute of Health funding compared to the less prevalent childhood diseases that receive a preponderance of the $30.5 billion budget.
We need to do more. We must do more.
I am determined to be my son’s sword and his shield. I am his advocate and will be the advocate for even more like him. I am my son’s voice in this world of noise and I will be their voice too.
Autism speaks and it’s time the world listened.