Working at an early intensive behavioral intervention clinic, you see firsthand the impact autism has on the life of the diagnosed child and their whole family. Simple things like going to the grocery store can be overwhelming or almost impossible with a child who engages in severe problem behavior. The future that a parent envisions for their child the minute they are born is challenged on a daily basis. Therefore, parents now have to navigate an alternative reality — one in which their preconceptions are challenged and where they need to quickly learn about the best way to help their child under these unexpected circumstances. As a parent myself, I can understand the desire to find a permanent solution to the challenges your child faces. In fact, as a human, I can understand the desire to find a simple fix to a recurring health problem. What can I do to make this go away?
A quick Google search of treatments for autism will render many hits. Some will come from reputable sources, such as the Centers for Disease Control and Prevention or the Shriver Institute. Others…well, not so much. Having just received the news your child has autism can be overwhelming. Just as overwhelming can be navigating through that Google search of treatment options, where there is no easy way to determine which purported treatments have been properly vetted and which have not.
Over the years, I have heard of many purported autism treatments that lack empirical evidence. Many will say, “What is the harm in trying it?” The harm is the wasted resources (time and money) spent on something that provides no results, but perhaps most importantly, the potential for unknown adverse effects. All medical treatments we receive have to be properly evaluated via scientific methods to determine their effectiveness and safety. However, there are some alternative methods that manage to circumvent scientific evaluation and the effectiveness claims they make have no official oversight. Thus, they often lack empirical evidence supporting their “cure” claims and information regarding their safety. Whenever I hear the word “cure” as it relates to autism, a complex disorder still not well understood by researchers, my skepticism goes on overdrive (this could have a lot to do with my training as a behavioral scientist). My concern for the general public also goes on overdrive.
Earlier this summer, while driving to work I heard a story on NPR that caught my attention. In search for help for their child with autism, a Chicago couple tried changes in diet and other approaches before landing on a clinic that has many franchises across the US. This company employs a combination of non-medical treatments, such as nutrition and physical therapy. Customers easily spend over $10,000 out-of-pocket for a few months of treatment on the promise that, “it will completely, absolutely, 100 percent change your life,” as woman on one of their commercials insists. As you can imagine, if it is too good to be true, it probably is. The Chicago couple did not see the results they were promised and decided to withdraw their child from this clinic. Who knows how many other clients have experienced similar results? Effectiveness data available are those reported by the company itself. Further, the methods employed by this clinic are not well understood and only have been evaluated in two studies, which lacked adequate experimental control. This clinic was featured on this NPR story because it is a large company with many franchises across the country, but how many smaller versions of this are there?
Just last week, I was reminded of another purported cure for autism. This one has the potential to cause more harm. A colleague in Spain shared a post on social media in which various health professionals in Madrid were urging city officials to block an upcoming event. Their concern was the dissemination of information that lacks proper empirical evidence to the public. The event was entitled “Autism is curable” and was organized by proponents of MMS as a “cure” for autism. In case you are not familiar, MMS, or Miracle Mineral Solution, is a solution that includes two chemicals – sodium chlorite and hydrochloric acid – that combine to form bleach. Proponents of MMS suggest it will cure autism by consuming orally, although some parents are also told to use it as an enema. As you can imagine, this purported treatment for autism lacks evidence supporting its claims and poses a serious health risk for children exposed to it. High doses of MMS can lead to diarrhea, vomiting, and dehydration. This is an extreme example of when the cluttered Google search on autism treatments can lead down a dangerous road.
These are just two of the many examples out there on what I am calling pseudoscientific treatments. Beware the Google search! Or maybe BE AWARE.
If you work with children or individuals with autism, how knowledgeable are you of alternative treatments for autism? Do you help disseminate information regarding evidence-based treatments?
If you are a behavior analyst, what is your ethical obligation regarding this issue?
If you are a parent or caregiver of someone with autism, how do you navigate the information available to decide what approach best suits your child?
It should be noted that intensive behavioral intervention for individuals with autism has been endorsed by the United States Surgeon General. The Surgeon General states, “Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior.”