Sunday, July 3, 2016

Buyer Beware

Recently several “suggested posts” have been showing up in my Facebook news feed regarding new treatments for autism. Intrigued by their enthusiastic sales pitches, I have been checking out these “sponsored” advertisements and found them to be full of empty promises and false hope. After more than twenty years of doing autism research, I can recognize unscrupulous charlatans who prey upon the hopes of autism parents willing to do anything to help their beloved children. However, I wonder how many parents buy into these methods, supplements, and treatments in earnest efforts to make their children better, wasting their time and money and even potentially endangering their children’s health.

In evaluating the claims of these advertisements for autism miracle cures, parents should watch for the following red flags warning them to steer clear of these promoters. First, these new methods usually have some secrecy surrounding them. Magical supplements have “proprietary blends” of ingredients that could be worthless or even harmful. In addition, parents should be wary of vague claims. If, indeed, this treatment works, the advertiser should proudly tell what it does. Some of these ads attempt to boost the value by using jargon and vague statements. Perhaps they use loaded language because those claiming expertise in the field really have none. Finally, the obvious clue that should make parents skeptical is that these treatments are ridiculously expensive. In fact, some of them are shamefully expensive, to the point they hide the cost of the treatment until after they have made all of their sales pitches. Certainly, parents are willing to spend any amount of money to make their children with autism better, but these charlatans prey upon desperate parents in order to make money. To me, that is criminal.

Because of quackery that exists in the treatment of autism, some people are quick to dismiss any kinds of alternative therapies that may benefit some children with autism. For example, I have read articles in the mainstream media that describe “what doesn’t work” and include among the so-called worthless interventions special diets and chelation. (These same types of articles also firmly state that there is absolutely no connection between autism and vaccinations. I disagree.) Not only are special diets and chelation deemed unhelpful in these articles, but these treatment methods are also described as “dangerous” to children with autism.

Of course, parents need to do research and consult with reputable medical professionals before trying alternative therapies. We were fortunate to have a medical doctor with extensive knowledge of nutrition who took a holistic approach to treating Alex. In addition, we did reliable testing before jumping into uncharted waters, and we only tried one new thing at a time so that we could discern the positive and negative effects of the therapy. When Alex was seven years old, we had him tested for food allergies, and after discovering that he, like many children with autism, had sensitivities to caseins found in milk products and glutens found in grains, we placed him on a gluten-free and casein-free diet, which he still maintains today. I believe that his cooperative adherence to this special diet has prevented him from having digestive issues that many people with autism suffer.

When Alex was nine years old, we had him take a heavy metals challenge test, which only required urine samples, and the results showed he had toxic metals in his system, something fairly common in children with autism. We knew that keeping arsenic, lead, mercury, and aluminum in his body was not healthy, and under the direction of his doctor, who had expertise in chelation therapy, we treated him for three years with a safe protocol to rid his body of these toxins. Alex’s doctor prescribed DMSA pills containing sulfur to bind with the toxic metals that removed them from his system. While special diets and chelation are not appropriate for all children with autism, we believe that testing indicated these methods were necessary for Alex to improve his health.

While the GFCF diet and chelation therapy worked for Alex, some other methods we have tried have not been as successful. For example, some children with autism benefit from taking fish oil Omega 3 supplements. When we have tried these supplements with Alex, he has had negative side effects, such as agitation, hyperactivity, and insomnia. Consequently, we felt these supplements did not work for him. In addition, we tried giving him vitamin A in the form of cod liver oil capsules along with the prescription medication urecholine after hearing that this therapy had been successful with other children. However, Alex did not show any improvement with this method, and we discontinued this treatment since he did not respond favorably, as other children did. Because children with autism have varied nutritional needs, some respond to certain therapies, while others do not. As Alex’s doctor frequently reminded us, so long as a treatment is not harmful, it is always worth trying.

When considering therapy methods, parents should also investigate less expensive and more convenient yet equally effective alternatives. For example, I researched Fast Forward, a computer-based therapy designed to improve children’s receptive language skills, which were a weakness for Alex. However, at the time, no local providers of this therapy existed, which meant traveling in addition to the great expense of the therapy itself. After more research, I found Earobics, a similar program that parents could purchase for home use at a very reasonable price. Believing that Alex could benefit from this lesser expensive program we could use at home, we tried Earobics and found this games-based computer program did indeed improve his receptive language skills.

Similarly, after reading about auditory integration therapy (AIT) and how it addressed hypersensitive hearing and sensory processing issues that Alex had, I was unable to find any therapists nearby who offered this method. In addition, for many parents AIT is cost-prohibitive. More research led me to the EASe disc, a CD parents can purchase for home use offering many of the benefits of AIT along with the convenience of doing the therapy in the comforts of home. For Alex, the EASe disc enabled him to overcome sound sensitivities that upset him, and now he is rarely bothered by loud noise. Unlike some people with autism who must wear earplugs or noise-cancelling headphones in public places to deal with overwhelming sounds, Alex can go to sporting events and concerts without earplugs or headphones, thankfully unfazed by the noise.

Although we found benefits to some alternative therapies, others did not work for Alex, and the successful therapies we found may not work for others. Parents need to do their research to find ways to help their children without putting them in danger and without spending ridiculous amounts of money on unproven methods. After reading through yet another Facebook ad claiming, “Our autism therapy works. Period,” I found the comments people made in response to this bold statement interesting, questioning the validity of the treatment. As one person wisely noted, “If there is ever a truly effective treatment for autism, it will hopefully be shouted from the rooftops and have folks lining up for it. I don’t think you would have to stumble on it via Facebook.” I totally agree. In the meantime, parents like me keep searching for ways to make our children with autism healthier, happier, and more independent. When I find something that works, I will be shouting it from the rooftops (or at least sharing it from my blog), hoping to help all of our children with autism be their best.

“And many false prophets will appear and will deceive many people.” Matthew 24:11


Adelaide Dupont said...

Hi Pam:

Fiona O'Leary is good at writing about the truths about these "treatments" from a parent's perspective.

Pam Byrne said...

Hi Adelaide,

I appreciate your suggestion of checking our her blog. However, from reading one of her recent posts, I don't think she would like that my blog is full of faith and scripture! ;) Thanks for your comment.

Take care,