By Barry Smeltzer MPAS, PA-C
Defeat Autism Now! Clinician and father of four
That was my thought at some point during what was a complete blur of six months. My son had gone from my talkative, affectionate, and healthy 18-month-old to a non-verbal, non-social, and sickly two-year-old in front of my eyes. It was so subtle. I was in complete denial. I told myself it was because he was our third, that is why he wasn’t talking as much. We adopted our daughter, which is why he wasn’t interacting. He was moved out of his crib, and that is why he wasn’t sleeping. His hypersensitivity to noises was because our other children were loud. He was constipated, not eating. I came up with every conceivable excuse to hold onto the future I had envisioned for him. My sister-in-law commented one day after watching Nick that lining up cars and other toys is a possible sign of autism. My response was that he is a boy and boys love cars.
Sickness, doctor visits, drooling, prescriptions, early mornings, fevers, no eye contact, shots, site reactions that lasted months, late days at work, more prescriptions, new baby, acetaminophen, ibuprofen, sleepless nights – a total whirlwind of months combined. Early intervention specialists observed Nick and stated he was significantly delayed. We went to a developmental pediatrician whose team also observed Nick. After completing a checklist, it was determined that Nick had autism. That one word changed my life forever. They made a few recommendations for therapy, but that was it. Insurance wouldn’t cover all the therapy, the rest was to be out of pocket – thousands upon thousands of dollars with no guarantee my son would ever go back to the way he was. As a father, it was like falling into icy waters without a life vest. I was in shock. I don’t even remember asking any questions of the doctor, I just nodded my head. The disbelief was not in the diagnosis itself, but in how quickly it came and how little there was to offer him.
His life, as I knew it, was already changed forever and he wasn’t even three years old. As I was still coming to terms with Nick’s diagnosis, my wife Linda was feverishly reading and researching. Time to change his diet, the books and research suggested. Off to the store she went; one bag of groceries came home that cost over a hundred dollars! Half the food that was bought was horrible. How can anyone afford this type of food? I had three more children to feed. Our lifestyle had led us to become accustomed to fresh organic foods. So do we cook Nick different food from the rest of us? Teach him he can’t ever have Mom’s pasta with parmesan cheese? Tell him to get over the taste and those boxed foods and frozen breads are your food future? Or, do we all eat the same things? How do you tell the others he isn’t different, he will be fine but he can’t eat what we eat except fruit and vegetables? Wouldn’t that tell my other children he is different? We are a family and we support each other. Why should that have to change with a one-word diagnosis? Could I afford all these different foods, especially since so many had to be thrown away? So many questions and not many answers, and even less money or time to figure it all out.
I was left with a decision to make but few choices. Should I continue to be in denial and hope things would get better? Hang at work a bit longer each day and avoid the house when possible? Go off on my own and research what I felt would be best for my son? Or should I join my wife’s already-started research in hopes to find out more? The first choice would destroy my life and my marriage – I love my family and my wife; this couldn’t be an option. I chose to jump in with both feet and join my wife. I needed to get up to speed with her ongoing research. For me, it was a welcomed distraction to spending my time feeling lost and hopeless for my son. It gave me strength to feel that I was part of the solution and not the problem. In addition to research, I helped out with my three other children, as this had changed their lives as well. They needed the fun and smiles again, they needed time away from the house, and most importantly, they needed to know we were going to be okay. When my wife was busy, I kept them occupied and involved. It was empowering to take over their care and keep their spirits up as we came to grips with the changes all of us were going through. It was that single decision that I feel helped rally our family to become stronger in the face of autism instead of crumbling.
After the shock had worn off, I started breaking down how this all could have happened. How, with my medical background, could I have missed all of these signs? I was looking at him as a father, not a practitioner. I could be excused for that. What I did not understand, however, was how a child could be diagnosed with such a complex and broad disease through mere observation. In orthopedics, the specialty I was in at the time, we had clinical suspicion for multiple disorders, but those suspicions were confirmed with objective evidence taking all of the patient’s symptoms into account. Lab work, x-rays, MRI, bone scans, etc. were standard procedures used to narrow down and confirm a diagnosis. That stood out to me when going over my son’s diagnosis. Not once was his constipation evaluated. They never asked why he was such a picky eater. No one investigated why he was not able to walk for almost a week after his vaccines at 20 months when he had a large reaction to his leg that lasted months. Not one lab test was done to see if there was any organic cause or chemical/hormone imbalance that could also manifest in Nick’s symptoms. I understand that observation and history are the hallmarks to psychiatric examination and diagnosis, but it is not a stand-alone any more than getting an x-ray on a patient you have never seen and making a diagnosis.
With this in mind, I began researching how autism was diagnosed, while looking at all of Nick’s symptoms. There were definitely some similarities to Nick’s behaviors and the traditional DSM-IV diagnosis. But there was so much more that was not explained. Some of his symptoms that were on the checklist were also symptoms of mercury poisoning, food allergies, and things I had not yet explored. It wasn’t until my wife brought home books explaining the medical conditions that manifest as autistic-like features that things began making sense. The book that caught my attention was a compilation of research and literature supporting the medical conditions associated with autism. As a medical professional and father, I understood the biomedical approach to my son’s symptoms as it “fit” Nick. It looked at all of the body’s systems and functions, not just behaviors, and broke them down systematically, showing the deficiencies associated with each. The more I learned, the more it made sense, and the more I saw that my son did not have a disability; he was sick. He was battling chronic conditions that were robbing his body of the nutrients and energy needed for development. The key to his future was not functionality; it was finding the deficiencies and correcting them one by one.
When we started Nick on a GF/CF diet–cold turkey–it was like putting a heroin addict through withdrawal. He was irritable, restless, had no appetite, and slept horribly for about three days, thrashing in the middle of the night, and unable to be comforted by anyone. My wife hunted for a dose of gripe water in hopes that it would help him and us. After those three days, he was like a new kid. He was more engaged, more verbal, less withdrawn, and more affectionate, although he still lacked eye contact. That was what sealed the biomedical approach for me. After seeing what he went through and the improvements afterwards, no one was going to tell me that it made no difference. We found a practice in our area that followed this approach, offering further options as well. On the waiting list we went. After our first visit, we went forward with supplementation based upon lab testing and continued to see improvements. It fueled my need to know more.
Books and research were showing that there were medical conditions and deficiencies that could manifest as items on the checklist diagnosis for autism. But how? Why? Instead of giving me answers, it sparked even more questions. As a practitioner, when a patient presents with a combination of symptoms, we evaluate for internal causes that could be causing the outward symptoms. We run tests and studies to more fully investigate the possible causes of the patient’s symptoms. I needed to learn how to figure out Nick’s medical puzzle. That is when I came across the Defeat Autism Now! clinician training. At the time, I was still working in orthopedic surgery, so this would be a completely different type of training for me. By the time I read about the training, however, I was already beginning to question mainstream medicine in every facet of my career.
That training would open my eyes to a whole world I never knew was out there. This was a different angle to the schooling I had done. It made so much sense, but I wondered why this wasn’t a part of my schooling. I took that training and ran with it. I listened to physicians explaining what they were seeing and they backed it with the medical knowledge with which I was trained originally. I listened to an adult recovered “Autistic” whose family took a completely different approach to healing their son, a different form of therapy than what is usually recommended. I took this information and continued to search, research, seek and find more about autism than what was talked about on the news and among the people I knew. I came to see that what I thought had obliterated my world was actually the key to saving my own family. Professionally, I needed to help others with this diagnosis and their families too. There is hope, there is recovery, and there are children who lose their checklist diagnosis following medical intervention. I needed not only to do this for my son and my family, but for those coming in behind on this journey.
I joined my first practice treating patients in 2009. I had the privilege to work with one of the best in the field, Dr. Anju Usman. I sought the knowledge she held, absorbed it and gave it to others. The patients we treated were not only diagnosed with autism, however. I began seeing patients with diagnoses of ADD, ADHD, skin issues, unexplained behaviors, allergies, asthma, GI symptoms and children who seemed to always be sick.
Treating these children opened my eyes to both the complexity and scope with which these children deal. Up until this time, the only conditions and behaviors that I had seen firsthand were what I observed with Nick and our friends’ children. Everything else that I had knowledge of came from the training I had received and the research I had done. The children that I saw as patients were not disabled. They were not “behavioral.” These were children that had major medical conditions that were labeled by the first outward presentation that was observed.
Let me explain this further. As a parent, you notice your child has speech delays or no speech at all. He or she has trouble with social interaction and situations. They may have “stims,” stereotypy, or self-stimulatory behavior, referring to the repetitive body movements or repetitive movement of objects. Examples of stereotypy are shown on Table 1.1 on the following page. They may also crave deep sensations like hard squeezing hugs, burying their feet and hands under you, or squeezing their hands tightly when they need to calm down. Posturing—such as leaning the abdomen over tables or the arms of the couch–and toe-walking are other signs. These are just a few of the classic traits of autism that most in mainstream medicine are looking for when evaluating for an Autism Spectrum Disorder.
What I had observed by now and began to look for in others was so much more. I learned some of the incredible adaptations that our children learn in order to communicate and also to compensate for the over- or under- stimulation they experience. I learned how truly intelligent and tolerant these children are in how they are able to function under the circumstances they deal with on a daily basis. The best analogy I’ve heard explaining how someone with autism sees the world around them came from an adult who recovered from autism. He explained that when two people are having a normal conversation with each other in a public place the amount of distraction and stimulation is minimal. To a person with autism, however, the amount of concentration it takes to block out distractions is like having the same conversation as a freight train passes by. That analogy stuck with me when I was evaluating patients and also interacting with my own son. I realized as a father and practitioner that if I could somehow lessen that burden, I could see their real personalities come out and allow their development to get back on track.
The results I began to see were dramatic. I was fortunate in my practice to see many new families just starting on this journey. I saw many families with young children who had either just gotten the diagnosis of autism or did not have any diagnosis at all but were noticing delays prompting them to seek help.
Through the training as a physician assistant and Defeat Autism Now! practitioner, coupled with the mentoring of Dr. Usman and the staff at True Health, I was seeing multiple advances:
- Non-verbal children saying their first words
- Non-social children giving their parents a hug
- Potty training for the first time
- Aggressive children getting stars for behavior at school
- Children being able to reduce or eliminate medication as underlying medical conditions causing the behaviors were being treated
- Reduction in constipation, diarrhea, bloating, food allergies/sensitivities, food aversions and other GI-related symptoms
- Decrease in colds, congestion, environmental allergies, skin rashes and eczema
This and many more dramatic positives were being achieved during my time at True Health. Nick was also making leaps and bounds during this time. I was sure his progress was due to medical treatments–not behavioral modifications–as we were not heavily into behavior modification therapy during that time. In addition to medical treatments, we were doing DIR/floortime at home with Nick, which we learned from Michele Ricamato, MA, CCC, speech therapist and founder of Souring Eagle Academy.
Just as my professional career took a dramatic new direction, so did the rest of our lives. Once you understand the importance of cleaning up your diet and environment and the process of detoxification, you can no longer maintain the same lifestyle. My wife had already cleaned up our diet by insisting on organic foods without preservatives and making the majority of our food from scratch. Adding in gluten-, casein-, and soy-free on top of that is no easy task. It takes a lot of preplanning and “planned spontaneity” in order to do anything outside the home for an extended period of time. Just like so many parents in our situation, we lost touch with many friends and family members during this time of cleaning up our home and environment. It can be a very lonely process and the need for support is greatest at this time. Luckily for us, Linda found multiple resources that would become our new family and support. Organizations like TACA (Talk About Curing Autism), Generation Rescue, NAA (National Autism Association), and ARI (Autism Research Institute) were vital to us in the beginning of our journey. We came across The Autism File and the Age of Autism and found them to be priceless publications that gave relevant parent-friendly information. For us, however, it was a local group that saved us and has become our family. Autism is Medical (AIM)—which has been featured in The Autism File–is a meet-up group started by mothers on this same journey. They have become our second family and have been there for us in so many ways and at such critical times. We would not be where we are today without their support and guidance. Any family going through this very difficult journey needs to seek out these resources as they are lifelines.
As I saw more and more patients and began to see trends as a clinician, I also saw the past, present, and future in research into the medical side of autism. Of particular interest to me was the work by Dr. Richard Frye at the University of Texas-Houston. He is a neurologist, but not like any other I had come across. He was seeing things in these children that few other doctors were seeing and more importantly, treating them and getting positive results. Dr. Frye is also a world class researcher who has published multiple studies on the prevalence of seizures and mitochondrial dysfunction in children with autism. This research and the stories from parents of his patients convinced me that he was onto something very significant. During the fall of 2010, I was able to meet with Dr. Frye and discuss some of the research he was conducting and where he felt the research needed to go in the future. His philosophy and personality were very similar to my own and I hoped that someday I would be able to help him with his research. It was around that same time that our journey would lead us from Chicago to of all places, Houston.
We have taken the next step in our journey and feel very fortunate to be so close to someone who understands our children so well. Dr. Frye is on the cutting edge of desperately-needed research, of which I am now lucky enough to be a small part. I also plan to continue working with children and adults dealing with these chronic conditions. We have also found community support in Houston with the Katy Autism Support parent group, and we will always have the support of AIM.
When I look back on the time since that cold winter two years ago, I now truly believe that Nick getting sick has saved our lives. His regression forced us to clean up everything in our lives and took my education to a whole new level. I now know that Nick’s life and future is not obliterated. He saved our lives, now it is my job and mission to get him back and help others do the same.
staring at lights, repetitive blinking, moving fingers in front of the eyes, hand-flapping
Tapping ears, snapping fingers, making vocal sounds
Rubbing the skin with one’s hands or with another object, scratching
Vestibular (sense of balance)
rocking front to back, rocking side-to-side
placing body parts or objects in one’s mouth, licking objects
smelling objects, sniffing people.