When entering the world of autism, whether as a parent or a provider, a number of questions immediately come to mind. From the parents’ perspective, questions such as “what caused my child’s autism” and “will my child be happy as an adult” are usually at or near the top of the list. From the perspective of the provider, we often fall well short of being able to provide adequate answers. It is understandable that saying “we don’t know the cause of your child’s autism” doesn’t exactly instill confidence in us as physicians or psychologists.
I believe the inability to answer these questions along with the difficulty in accessing services has contributed to the search for alternative therapies in autism. Autism is not unique in this way- cancer, multiple sclerosis, chronic fatigue; basically any condition that lacks a definitive “cure” tends to draw in alternative therapies. I think this is quite natural and understandable.
The difficulty (one of many) is trying to make sense out of so many therapies that seem to exist and are touted as effective in treating autism. Dietary modification, probiotics, antifungal therapies, detoxifying regimens including chelation therapy, craniosacral therapy, sensory integration therapies, hyperbaric oxygen therapy, stem cell transplant, etc. – the list becomes daunting.
With the “developmental clock” ticking, we have the very strong urge to try to do everything we can as quickly as possible “as long as it is safe”. But how do we know it is safe? How do we measure the benefit of a complementary therapy when the child is already making progress with the standard treatment approach (early intervention with behavioral therapy, speech therapy, OT, etc.) and when we are doing so many treatments simultaneously?
“Biomedical” therapies are a prominent group of alternative therapies and are traditionally defined as dietary modifications and nutritional supplementations targeting a person’s biochemistry and aiming for improved wellness. Some expand this definition to any and all complementary and alternative medicine (CAM) approaches. Biomedical therapies are most often employed by naturopathic physicians. Naturopathy aims at identifying and removing the causes of illness, rather than just eliminating or suppressing symptoms.
Unfortunately, biomedical therapies in autism are faulty as they make assumptions about the cause(s) of autism based on theory instead of evidence. Those of us who have been caring for individuals with autism for decades have seen many of these biomedical therapies come into fashion, only later to be proven as ineffective when placed under the rigors of double-blinded, placebo-controlled research studies.
But what about therapies in which adequate research studies just haven’t been conducted? What about anecdotal evidence? Don’t testimonials from parents observing benefit with some of these therapies count for something? If biomedical therapies are safe and if they have no side effects (two big “ifs”), shouldn’t we try them just in case? Won’t we regret it if the scientific community later discovers that some or even one of these therapies is proven effective? Do we have time to wait for research to be conducted while our children continue to age and continue to be impacted by autism?
Once again, it is understandable why a 2004 study by Green and colleagues revealed that over a hundred different treatments were being tried by families across the United States and that, on average, parents were using seven different treatments at one time for their child. A more recent internet survey conducted by the Interactive Autism Network Community revealed IAN families, all together, utilizing 381 different autism treatments.
I admit that I am not a parent of a child with autism. I think if I was, I might also try some of these biomedical therapies, thinking that I want to do everything I can for my child. But as medical providers, we have a different role. We need to strive to understand the science of autism, so that families can trust us to provide the best knowledge and information available. We need to provide this information in a compassionate manner, so parents can feel comfortable to ask us questions and keep us informed about therapies they are trying. If we do not encourage open dialogue, we damage the parent-provider partnership that is critical for the long-term care of an individual impacted by autism. I believe that, in some individual cases, certain biomedical approaches do target overall wellness, and can benefit a child with autism just as they might benefit any child. I encourage parents to speak to their autism provider about therapies they may have heard about. It is our job to help you navigate the complexities of autism treatment, no matter how murky the waters may be.
Green, V.A., Pituch, K.A., Itchon, J., Choi, A., O’Reilly, M., & Sigafoos, J. (2006). Internet survey of treatments used by parents of children with autism. Research in Developmental Disabilities, 27(1), 70-84.