As we approach 2012, I am struck by the impact of autism in the news. This is a good thing. It is a brush fire of information that will spark continued research and awareness. It is a new frontier for those familes who have lived with autism, and for this writer, after 24 years, hope is in the air.
Autism Speaks has announced the Top Ten Research Achievements of 2011. We are now witnesses to the role of genetics and the increase of documented cases of autism, and so much more, including "game changing discoveries" in this arena.
Science matters. Trial and error matters. A cure for autism matters. Evidence based intervention for autism matters. The Autism Science Foundation spearheads its Recipe4Hope campaign to directly fund "pre-and post-doctoral autism research fellowships to encourage the brightest young scientists to devote their careers to autism research."
I have thought a lot about what gives me hope and optimisim for my child and it revolves around my "show me" mentality and approach to the mystery of autism.
Merriam Webster’s Medical Dictionary defines science as: “knowledge or a system of knowledge covering general truths orthe operation of general laws especially as obtained and testedthrough the scientific method and concerned with the physical world and its phenomena”. The Scientific Method asks a question followed by research, hypothesis, experiment, analysis and conclusion. Ironically, the internet, which is often a stunning source of cutting edge ideas can also be a conduit of misinformation, inciting rogue theories.
Willard Duncan Vandiver, the Congressional Representative from Missouri made a statement in 1889, to express that Missourians were particularly astute and not easily fooled. ‘I’m from Missouri; you’ve got to show me.” Duncan may not have realized the impact of his words. Whatever barriers or challenges that have blockaded my path, certainly have met with a "show me" attitude. Parents of autistic children are so very vulnerable that we are often willing to plunge into any intervention. The conflict of Science vs. Sentiment is almost tangible. My one caution and caveat is that there is money in autism these days. It is the most practical message to be aware of snake oil, or quack remedies.
Our son is now 24 years old, and we are seasoned veterans, living with autism. I can share over 20 years of interventions and I believe that evidence based practice is our best hope. The science, and not the sentiment, must prevail.
Why.
I remember that when my Dad was succumbing to colon cancer in 1996, a well -meaning friend suggested we try shark cartilage. Given that our options were depleted and that we considered it a benign intervention, my father tried the pale cream-colored powder, stirred in a glass of orange juice. He quipped: "I'll just imagine these little sharks, like packmen, destroying my cancer cells." He died a week later, from the cancer that monopolized his life for 7 years. No regrets about the shark cartilage, though, we smiled at his joke, and that was it.
So here we are an auspicious group, we parents of autistic children. Full disclosure, my initial venture into the world of rogue treatment for autism, was when I packed up our 4 year old autistic non-verbal son, and traveled to Montreal to attempt auditory training. I had read The Sound of a Miracle by Annabel Stehle and we decided that once again, a benign procedure was a win- win situation. Our son wore earphones tied to his hat (because he tried to tear them from his ears) for 2 solid weeks. We returned to the US, without regret, but there were no whistles or bells that rang to say “eureka---it’s a miracle”. Ironically, another more pressing issue intervened. Our son developed a type of parasite condition (we were told that it was possibly due to his drinking the lake water in Canada) that was so severe; it rendered him 24 pounds, at age 5. The skeptics might now cry "leaky gut syndrome, prevalent in autism". Nevertheless, he was hospitalized and a myriad of anti-fungal antibiotics were administered. He was denied all food by mouth, in order to determine cause. Miracle of miracles, whether it was the behavioral modification (no food) or auditory therapy or just fate, he uttered his first clear sentence "I want spaghetti"!
Through the years we tried brushing therapy (with a corn husking brush), to temper tactile defensiveness, occupational therapies, speech therapy, behavioral therapy, RDI (Relationship Development Intervention), however, we did not enlist any invasive procedures.
We were not comfortable with the secretin trials. Secretin (a drug administered during endoscopy to determine gastrointestinal problems) became a newsworthy item when a mother discovered that her child became verbal after secretin was given to her child. The idea of putting a drug into our child that could potentially harm his liver frightened us. Nevertheless, given that there is always money to be made when people are vulnerable, specialists began selling secretin injections charging thousands of dollars for doses. Recent studies have disputed the claim of secretin's efficacy in the treatment of autism.
Chelation is another intervention used to combat autism. It is a process where heavy metals, as mercury and lead, are removed from the body. I was introduced to chelation when my Mother had a heart attack 26 years ago. Cardiac by-pass was recommended, and given that it was major surgery, a cousin suggested we try chelation first. We chose not to take that route, as it did not make sense to us. We believed that the science made sense. Clogged arteries need to be repaired surgically.
We even allowed our son, then 17 years old to try the Hyperbaric Oxygen Chamber therapy. I decided to interview him about the experience: I do value his perception, as it is he is the one who has autism and it is he who got inside that machine, and here is his response: "It was an "okay" deal"… "It does make me dizzy" …"I think it's not good, it made my ears hurt, like an airplane" When I asked him what he meant by "airplane", was it loud or was it the pressure, he indicated "both". Initially, when he first tried the chamber he told me that "it calmed him". I asked him recently if it was calming or not; his response was that "in the beginning it was okay, but then it wasn't"
We can circle the drain or move forward with purpose. Perhaps my "Missouri" ethic has been a guiding force, but for our son and his autism, it has given us solid ground to stand on. "Show me", is all we can say, and feel hope.
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