I will never forget that Friday, five years ago, when I received the official diagnosis of Andrews autism. I could have sworn I saw tears being held back in Dr. Green-Snyders eyes as she coolly gave my wife Tammy and I the bad news.
Dr. Green-Snyder, a well known local expert on autism, was the first to help us rescue Andrew, age 2-1/2, from his world of frustration and isolation. She was quite detailed in her analysis. But, in retrospect Tammy and I were all but clueless to what she said – and had no idea about what we were about to get into.
Tammy, the optimist in the family, tried lamely to put a brighter face on things. On the long drive home from Detroit, she said: “it will be ok, its just some sort of minor learning disability.”
I have always been an internet nerd and it was natural for me to get to the bottom of this problem through research. I was shocked with what I found. Autism is a lifelong disorder that effects a childs ability to learn, communicate and socialize. There are many associated physical issues that can come along with autism. People with autism can be quite intelligent but their disability makes it difficult for them to ever live independent lives.
I was in disbelief as I frantically went from web page to web page to find a different answer. The house was quiet as I stayed up most of the night trying to find the fix. There was no fix. There were many tears shed in our family over that weekend. I had been hit by a semi-truck loaded with bricks and I wasn’t sure I could get back up. (unfortunately this was the one of the first articles I found that night (HERE).
I did eventually get back up. I said there is not a cure for autism. This is true BUT there have been a few thousand documented recoveries for those that have been willing to change their entire life. This is the gamble of all gambles. This is the largest mountain one will ever climb with no guarantee of ever reaching the summit. If you are willing to lay out giant amounts of money, work your 2 year old child 40 hours a week in grueling therapy, endure the torture of restrictive diets all while getting prodded and poked for years with needles, then, with only with a 5% or less chance is there a hope for a recovery. As only a father can understand, those odds were good enough for me. We had to go for it. My wife immediately left her career in purchasing to lead up our in-home therapy team. I learned everything I could about autism with a focus on biomedical treatments. To be honest, plotting out Andrews recovery was more like a lab mouse going after cheese in a complex maze designed by an evil scientist. Trial and Error and perseverance were his only hope.
Andrew, now age 7, is a really special child. His bright blue eyes and quick smile will light up a room full of people in a matter of seconds. His confident demeanor and unbridled enthusiasm is unmatched. Its hard to imagine more charisma coming out of even the Dalai Lama. It hasn’t always been this way. Andrew started out as a normal happy baby full of love. His childhood development for his first 16 months of life was normal and unremarkable. Something went wrong. He started to quickly regress, losing all language, and not wanting to socialize. He was extremely temperamental and would bang his head upon any surface at the slightest point of frustration. The headband of bruises he wore was very heartbreaking to see. Andrew was asked to leave daycare at 27 months of age. Tammy and I knew something was wrong but this was a major wake up call for us. After a futile string of visits by pediatricians, neurologists, and school professionals, we finally figured out the issue with Dr. Green-Snyder.
There are several approaches to helping a child with Autism Spectrum Disorders. As little as ten years ago, the main approach would be public school special education programs followed by a lifetime of adult care. The best you could really hope for your child is a local Walmart job. Times have changed. There are several innovative programs available to help re-train the autistic brain. Applied Behavorial Analysis(ABA) is one such approach. ABA breaks down the item to be learned into small incremental steps and builds up until complex tasks are learned. The program relies on positive reinforcement. The program must be precisely tailored to the child and intensive(>33 hours per week). As more and more skills are learned, the kids eventually begin to learn on their own like normal children. A small number of children have done so well with ABA that eventually they became indistinguishable from their typical peers and are considered to be “recovered”. There are several other behavioral treatments to autism such as Greenspan’s Floortime, RDI, etc. Due to their intensive nature and need for highly educated professionals, these treatments run >$25,000 per year in cost.
The behavioral approaches to autism are very effective but one can argue that rebuilding the house while the fire is still burning is not the best solution. Something went terribly awry in children with Autism. The cause of Autism is very much unknown and filled with great controversy. Is it vaccinations? Why do seemingly normal kids suddenly regress into autism? Why is there a sudden epidemic in cases? Children with autism exhibit differences in their bio-chemical makeup. Recently, several prominent scientists and practitioners have put forth bio-medical treatment options based upon good science. As some of the underlying physical problems are addressed in autism, the kids begin to improve and the behavioral therapies become much more effective. Some of these therapies include: chelation, special diets, intravenous immunogloblins, methylation corrections, antivirals and many more. The Autism Research Institute has documented a few thousand recoveries from autism over the past 5 years due to biomedical treatments.
Andrew has made incredible progress over the past 5 years but still has much further to go. We have not hit the autism lottery and found the silver bullet to his recovery. Instead, the “all of the above” approach has slowly but surely improved the situation for him. He has endured 5 years of ABA therapy. He has four very loving therapists. A casein, gluten, soy and peanut free diet has been in place for 4.5 years with immediate and substantial results. More advanced therapies such as Chelation, IVIG, etc have occurred over the past 36 months. The best odds for recovery occur before the age of eight and this fact is making me very uneasy as Andrew is just now 7. He still has a bit to go.
From an angry head banging child of 2-1/2 years to a fun loving but quirky seven year old, the progress has been incredible…………….
David Atkinson is the father of two boys, age 7 and 9 - one with autism, one without. Atkinson is the head of a business unit within a global manufacturing company. David and his wife reside in the state of Michigan and are active in the greater autism community.