Some studies have shown that genetic mechanisms contribute to the development of autism; In addition, some (unidentified) environmental factors may also likely play a role. (autism speaks).
The standards that determine the diagnosis of autism vary. In addition, the variation in symptoms between patients is so great that to date there is no way to prescribe the “perfect” treatment plan for all children on the autism spectrum. (National Institute of Mental Health). The ambiguous characteristics of an autism diagnosis offer little help to parents who must learn to manage behavioral, emotional, and cognitive problems. The uncertainty is pushing many parents toward alternative treatment plans that claim to show results but have little or no scientific support for their claims.
Children with autism have had the most promising results when they engage in intensive behavioral therapy. This therapy can be time consuming and there is no way of knowing how well a patient will do. The unpredictability and long-term commitment are little reassuring for families and professionals looking for quick results. This desire for immediate results has lured many parents and professionals to therapies that lack scientific evidence. Some of the popular alternative treatments include dietary restrictions (particularly gluten and casein free), rebirthing, dolphin therapy, nutritional supplements, and sensory integration therapy. Due to a lack of scientific evidence, these practices are classified as pseudoscience.
Practices that fall under the pseudoscience category claim to have scientific evidence to support their practices. However, much of this “evidence” is false or misinterpreted. These treatments can lead to potentially dangerous treatments. Additionally, parents could be wasting money and time on a treatment that won’t work. Because of the popularity of these new treatments, many behavior analysts devote significant time to investigating claims or new treatments, reviewing the risks, and discussing their findings with their clients.
Parents often rely on these alternative treatments because they seem safe. Additionally, recommendations from friends or other parents carry a lot of weight when families are struggling to figure out how to handle day-to-day interactions. Parents are also understandably looking for hope and control over their children’s treatment options.
In a perfect world, parents would choose a treatment plan that has been thoroughly validated with peer-reviewed randomized studies. These studies would include large sample groups, adequate control for factors, and validated outcome measures. Unfortunately, most alternative treatments are based on theories and involve cursory studies, if any.
The CAM treatment studies that have received detailed studies are few and have shown that the use of facilitated communication and secretin are not effective treatment options for children on the autism spectrum. An extensive search for randomized studies on gluten and/or casein-free diets only found two studies. The search was an attempt to review studies to determine if these diets might help alleviate behavioral and social functioning symptoms associated with autism. The two studies had conflicting results. The lack of helpful scientific evidence combined with no evidence of negative effects only adds more uncertainty to these diets as a treatment option. Possible benefits of the diet include improved communication and attention skills, and reduced hyperactivity. Potential downsides included child restraint and wasting money on potentially ineffective treatment.
Lerman and his colleagues (2008) studied three children with autism to determine the effectiveness of hyperbaric oxygen therapy. The study found that the therapy did not impair attention to tasks or alleviate behavior problems. The decided finding was that the therapy was not worth the time and money required to complete therapy. Other research suggests that behavior, attention, and cognitive behaviors may improve after HBOT. Additional research with a larger population and controlled variables is needed for a more accurate decision.
To date, alternative treatment methods have not been adequately researched and the lack of scientific evidence belies their use. Many of the most popular alternative tactics are completely unexplored. Most of these alternative treatments require further investigation.
If a family chooses alternative treatment, their doctor should try to persuade families to do proper research and study their options. The need to make an informed decision is especially true for treatments that rely on theories and claim to work on multiple, unrelated symptoms. Treatments that suggest children will respond dramatically and/or be cured by treatment, or that are based on anecdotal data, should be avoided.
Families and behavioral specialists should be on the lookout for studies that do not have peer-reviewed references and for treatments that claim no potential side effects. Objective evidence is needed, but people seem to have lowered standards in the social sciences. As scientists, we try to predict and control subjects with which we are familiar. This makes it very difficult for many scientists to recognize pseudoscience in unfamiliar disciplines.
If a parent expresses an interest in unproven treatments, their doctor is responsible for educating the family about the risks associated with these types of treatments. Some alternative treatments, such as chelation therapy and rebirthing, have had fatal side effects. Properly informing a parent about potential risks can protect a child from unsafe practices and/or save a family time, money and frustration
While it is important to educate families about the risks associated with alternative options, healthcare professionals should show empathy for parents’ need to find a solution. “As parents and professionals continue to try new, unproven therapies for autism, practitioners with expertise in behavior analysis can help by providing objective, quantifiable data on outcomes for individual children.” Medical professionals can show support and concern when a family chooses an alternative that relieves stress and grief and has no side effects.
While parents are free to make choices for their children, relying on pseudoscientific treatments instead of a proven study can be dangerous as long as their safety is intact. Also, parents should not rely on any alternative treatment to “get rid” of autism. James Lieder, father of an autistic child, said this about alternative treatments: “I’ve been up my neck in ‘alternative’ medicine and waded out poorer but wiser. I now realize that what the “alternative” practitioners are really selling is hope – usually false hope – and hope is a very seductive thing for those who have lost it. It’s really not surprising that people are buying it, even if their better knowledge tells them not to.”
Thanks to Paul Napier, MA, BCBA