Autism Treatments: Ask a Grownup
by Gary Evans
September 24, 2012—Let me begin my saying that I have good news and bad news. Let’s start with the bad news.
If you click on over to newautism.com, you’ll find a Dr. Chun Wong, of Algonquin, Illinois, offering reassurances that “autism is a treatable disease” and serving up “tools for successfully defeating autism now.” However, the good doctor warns, “You can do all the treatments and therapies in the world, but you’ll get nowhere if you don’t have a clearer and full (sic) understanding of the disease or condition known as autism.”
It should come as no surprise that Dr. Wong has written a book. It’s called Dr. Wong’s Stop Autism Now Using Secrets of Biomedical Medicine. It is, we’re informed, a “high quality, full color book with over 100 pages,” available to desperate cognitively-biased parents everywhere for the low low price of $149.
If you just don’t have the time and energy to wade through the whole one hundred pages of “secrets,” Dr. Wong has a solution all boxed up and ready to go: Hyperbaric Oxygen Therapy, which, he assures us, is “The No.1 Most Effective Way To Defeat Autism Now!” Dr W will happily sell you your very own HBOT chamber for $6,900; there’s a deluxe model that runs $11,900, and the luxury model will set you back $19,900, however shipping and handling are free.
I’m not sure I believe in Hell, but people like Dr. Wong make me hopeful.
So the bad news is that this guy exists. The good news is there are a lot fewer Dr. Wongs than there used to be. When I first found out my son was on the spectrum in 2004, I decided to search the Internet to see what I could discover about the current state of research and treatments. What I found was something akin to a Wild West frontier town on a busy Saturday afternoon; you could practically hear the pitchmen and smell the snake oil. Apparently, the hucksters and charlatans of the world had found autism and they considered it a growth industry.
Part of the problem was the research community had spent decades faithfully ignoring autism, so when the U.S. Centers for Disease Control (CDC) starting reporting increasing numbers—dramatically increasing numbers—they were caught flat-footed. Good research takes time and good researchers are reluctant to turn thumbs up or down on any idea, no matter how ridiculous it might seem, until it is tested, published, and peer reviewed.
On the other hand, you had a lot of parents who were very hungry for answers, some of them desperately so. “We’re just getting started and it’s going to be years before we have anything substantial to offer you,” was exactly what nobody wanted to hear. Into the information void stepped anyone with a treatment to peddle and an unproven theory to back it up. What’s worse, with no scientists to interview, the media were giving miles of coverage to the Dr. Wongs of world, bestowing a level of credibility they would never have enjoyed had there been legitimate sources to turn to. “We don’t know anything,” never leads the 6:00 news, but “is this doctor curing autism?” just might.
At that time, as a parent, you really had to make an active decision about which way you were going to go on the subject of treatment. The pressure to try these therapies was great. After all, the thinking went, you have nothing to lose and everything to gain, and there was an avalanche of anecdotal evidence to ease any misgivings you might have about utilizing one or two or five or ten of them.
Honestly, for me, it was never a tough call for some very simple reasons: I know what a guinea pig looks like, I know what my son looks like, and I can tell the difference.
Even if it turned out that one of these remedies had some legitimate value, I wasn’t going to use my child as the test case, at least not without medical supervision and the promise of published results. It was my feeling that if the people that developed these treatments really believed they were effective, they should find the funding for a university or research facility to test them and publish the results. The fact that they seemed unwilling to do so made me more than a little suspicious.
Over time, as these treatments have been subjected to scientific scrutiny, they’ve pretty much fallen like dominoes. One of the most popular, the gluten free/casein free (essentially wheat and dairy free) diet, was put to the test in a preliminary study in 2010, and found to have virtually no benefit at all. This was a treatment that even skeptics thought might be having a positive impact.
But here was the deal breaker for me when it came to deciding what to do about unproven treatments:
Where are all the autistic adults? Most of the treatments in question had been around for a very long time by the time Christopher and I entered the world of autism. You would think there would be dozens—maybe hundreds, maybe dozens of hundreds—of autistic adults who had actively endorsed this diet or that device, intelligent experienced grownups who were walking around telling anyone who would listen, “You know, if I have waffles and a glass of milk for breakfast, I can’t stop flapping my hands for the rest of the day.”
I couldn’t find any. Not one.
From the very beginning, I’ve gotten my best, most useful information about how to understand my son from adults on the spectrum. I’ve written before about Jim Sinclair’s game changing “Don’t Mourn For Us” , the independence I saw demonstrated by the people at Autism Network International, the power and purpose behind the voices at Wrong Planet, and Temple Grandin, of course, autism’s most prominent and trusted advocate. If none of these voices were singing the praises of HBOT, chelation, megavitamins, GFCF diets, etc., then I wasn’t prepared to subject my son to any of it.
In the intervening years, real research has supplanted outlandish speculation and the purveyors of the unproven—the Dr. Wongs—have been marginalized or dismissed outright by the general public and the media. Within the community, cooler heads have begun to prevail and the waves of recovery promised by the smorgasbord of “biomedical” treatments have never materialized, easing the pressure on parents to try something just in case it might be helpful.
Admittedly, it would have been nice if any of the treatments had turned out to be of legitimate value. I’m all for easing discomfort and helping people achieve a happy and productive lifestyle, but I have to say this: my son will face enormous challenges in his life, challenges that we neurotypical people can’t even begin to imagine, and he will deal with them every hour of every day without respite and it makes me sad and weary sometimes just thinking about it. It would make me sadder still to think he would have to do it without the occasional plate of waffles and a glass of milk.
September 24, 2012
