HappyChucks   For Families Navigating the Autism Waters

There are hundreds of alternative treatments available for parents of autistic children to try.

Researchers, scientists, and the medical community at large have made a lot of noise about the validity of most, if not all, of these alternative treatments, saying things like, "They haven't been scientifically proven to work" and "They're treating something which has been scientifically proven to be inaccurate".

They would prefer to test these various treatments using two different methods, either of which would be scientifically valid.

Double Blind Studies. Take 200 similar kids, give 50% the treatment and the other 50% a placebo, and study the effects. If the results are different between the two groups then the treatment works.

Identify a Single Variable. Keep everything else in your child's environment exactly the same, and introduce one new variable. Then see what happens. If you see improvement then the variable made a difference.

Both of these methods are great, but both of them have major problems for parents trying to help their little ones.

Problem 1. There is no such thing as 200 autistic kids who are otherwise similar - autism affects each child differently, all the way down to their brain and central nervous system's ability to process information. There are many cases where a treatment/supplement helps one child and has no effect on another child, or even makes him worse.

Problem 2. In many cases, a child will make improvements based on multiple variables working together. In these cases, it would be impossible to isolate the one variable which caused the improvement.

Problem 3. Time. If we wanted to try 200 different remedies, treatments, therapies, supplements, diets, etc., and we kept everything else constant, and we tried each "variable" for one month, it would take 17 YEARS to get through all the possibilities. And that's just doing them one at a time!

Personally, we didn't want to wait 17 years. We believed we had a small window of opportunity, a few years at the most, to make the biggest impact on Calvin's life.

We listened to the scientists for the first year or two, but then we realized they didn't really have an answer - they were guessing as much as us, but would only try one thing at a time.

After that, we tried a lot of different things, often times in combination. If we threw 6 new things at him, and if/when he improved, we were happy with the improvement. Then, over time, we could try to reduce or eliminate some of the new things to figure out what wasn't necessary and/or helpful. If we introduced new things and he had a bad reaction, we could pull the plug on some/all of them quickly.

One of the keys is to keep a detailed record of what you're doing, which I've written about before. Another key is to be patient, yet impatient, at the same time. But listening to the doctors and scientists and taking their words as gospel - that's not the key. Maybe if they had an answer or a solution I would think differently. But so far they've proven that their methods aren't helping each individual family out there.

Last week, in the first of 3 cases to go to trial, federal health officials concluded that childhood vaccines contributed to symptoms of autism in a 9-year old Georgia girl (as reported by the Atlanta Journal Constitution.)

The details from the court case are not yet completely available, but the result is. The U.S. Department of Health and Human Services has concluded that the family of Hannah Poling, of Athens, GA, is entitled to compensation from a federal vaccine injury fund. The amount of compensation is still being determined.

Obviously, this is going to add fuel to the vaccination debate fire. It's going to get even hotter when we look at the week's events in total. Let's take a look at how the week unfolded.

1. Senator, and Republican front-runner for the presidential nomination, John McCain was quoted as saying "there's strong evidence" that thimerosal is responsible for the increased number of diagnoses. This brings up a wave of federal spin following Senator McCain's comments.

2. The Center for Disease Control and Prevention, the American Academy of Pediatrics, the American Medical Association, the Food and Drug Administration, and the Immunization Safety Review Committee all stated that no scientific evidence points to a link between the two.

3. The associate director of the American Council on Science and Health expressed disappointment that McCain seemed to be poorly briefed on the issue. "I would hope that, as president, he would have advisers who would get it right. I attribute this to a misstep rather than policy."

4. The program director of the Arizona Partnership for Immunization says "...It doesn't surprise me that someone would not completely understand what the science is indicating." The group advises parents to discuss any vaccination concerns with their pediatricians (and we already know what the American Academy of Pediatrics says. – emphasis mine.)

5. The U.S. Department of Health and Human Services concluded that a family is entitled to compensation due to a vaccine's contribution to a girl's autism diagnoses.

Hmmmm. I wonder what Senator McCain really knew...

I'll stand by my article from last month – there are more questions than answers on this topic, and anyone who accepts the vaccination schedule as 100% safe across the board, dismissing any and all correlation between vaccines and autism, is probably earning a living from an organization who espouses that view.

Earlier this month, the American Journal of Human Genetics published findings that the results of a previous study were duplicated not just once, but 3 times – in 3 different locations by 3 different research teams. Researches from Yale University, UCLA, and Johns Hopkins University have all validated the previous study linking a specific gene to autistic behaviors.

Dr. Dietrich Stephan, Director of the Neurogenomics Division at TGen (Translational Genomics Research Institute): "Autism is a perplexing disease whose cause remains unexplained. It has long been suggested that environmental factors, linked with genetics, play a role in causing the disorder. As recently as last week, researchers in California published a study that found no proof linking autism with a mercury-based preservative found in childhood vaccines. While there are no clear-cut answers, researchers are one step closer to understanding autism's genetic cause."

What does this mean for the future?

It's too early to tell for sure. TGen is currently collaborating with SARRC to apply these findings in children in Arizona who have been diagnosed with autism. Who knows how much further research will take us? Maybe someday they'll be able to:

• Screen for this particular gene, giving parents-to-be earlier warning. (or giving broken-gene carriers other options entirely)
• Discover what is causing the gene to malfunction.
• Learn how to repair a broken gene. (maybe grafting from a healthy gene, or from a parent's or sibling's gene.)
• Develop or recommend a supplement which makes the broken gene function more normally.

I'm dreaming about the possibilities for the future...