Navigating the world of autism treatments and staying abreast of the evolving evidence base of a wide array of interventions spanning diverse modalities can be overwhelming for even well-trained clinicians. Parents and caregivers for children with an autism spectrum disorder (ASD) equally face troubles reconciling treatment information often obtained not only from their health care providers, but from family members, friends, and the Internet (where thousands of websites promise “cures” or improvements for ASD/ASD-related symptoms). In this context, families are commonly seeking complementary and alternative treatments for their children. Although some of these treatments are relatively benign, key safety and efficacy issues remain, and parents often act with little to no guidance from their child’s primary care provider. With the increasing prevalence of the use of nontraditional treatments used both with and in place of conventional treatments, you should be prepared to counsel families in making the most informed decisions in the best interest of their child.
Adam is a 15-year-old boy who carries a diagnosis of an ASD accompanied by enduring gastrointestinal troubles (constipation), auditory and tactile sensitivities, and episodes of aggression towards himself and others. Adam is essentially nonverbal and enjoys watching children’s videos repeatedly (Thomas the Train); he attends school in an alternative classroom as his hyperactivity, impulsivity, and susceptibility to behaving in an unpredictable physical manner limits his ability to successfully engage with peers without one-on-one supervision.
In an attempt to address Adam’s challenging behaviors (that haven’t responded significantly to a variety of conventional medications and behavioral strategies), his well-meaning and highly educated parents seek advice. They admit they’ve come across websites that offer treatments with a promise to cure their son’s autism symptoms. Adam’s mother has always preferred “a more natural” approach to her son’s treatment, and she still has vivid memories of the side effects her son experienced on past medications, such as akathisia with risperidone.
Adam’s case is not an uncommon scenario encountered by many families who may be experiencing increasing desperation to address their child’s autism-related struggles while being disappointed by conventional treatments. Autism is a complex neurobiologic disorder with a heterogeneous presentation for which there are no well-established pharmacologic treatments to address its core symptoms of social-communication impairments and restricted, repetitive behaviors/interests. With this in mind, it’s not surprising that studies indicate that at least 50% of families with an autistic child have tried complementary and alternative medicine (CAM) treatments. Notably, the higher the child-related stress, the more likely the families are to try CAM interventions ( J. Child Neurology 2014;29:360-7 ) and higher use of CAM is associated with coexisting gastrointestinal problems, seizure disorders, and behavioral problems in youth with autism ( Pediatrics 2012;130:S77-S82 ).
CAM treatments are defined by the National Center for Complementary and Integrative Health ( nccih.nih.gov ) as “a group of diverse medical and health care systems, practices, and products that are not presently considered to be a part of conventional medicine.” They may include biologically based therapies (dietary supplements, chelation, immune-modulating agents, special diets), mind-body medicine (acupuncture, biofeedback), energy medicine, and manipulative and body-based treatments (massage, chiropractic manipulation). Families who choose CAM interventions for their children with autism tend to try natural products, special diets, and/or mind and body practices.
Reviewing the literature surrounding CAM, there are few randomized controlled trials published, and you should be aware that evidence for most of these interventions is insufficient to make strong recommendations for or against their use. Certainly, some treatments considered as CAM can be effective in treating specific target symptoms that often co-occur in individuals with autism (using melatonin to address sleep difficulties) without major safety issues, but others are potentially dangerous and likely ineffective (chelation therapy, hyperbaric oxygen, mineral solutions). The National Autism Center has published a comprehensive analysis of autism interventions ( www.nationalautismcenter.org ) that can be helpful for parents and practitioners to make informed treatment decisions; their most recent 2015 review categorizes some CAM treatments as having “emerging” evidence for favorable outcomes (music therapy, massage therapy, exercise) and labels some CAM interventions as having little to no evidence to support their efficacy. Interestingly, gluten-free and casein free diets are included in this latter category. Families are frequently curious about such elimination diets, especially given the buzz in both the popular and scientific press about the gut-brain connection. Although these diets do not have strong evidence to support their use in managing core features of autism, investigators are examining whether there may be a subgroup of children with autism (those with gastrointestinal problems) who may achieve potential benefits. All in all, there’s a need for more robust research on this particular set of treatments. Families should be aware that if they chose to pursue an elimination diet, adherence for children who are inherently picky eaters may be challenging. Furthermore, although commonly labeled as safe, these diets could be linked with potentially harmful adverse effects such as nutritional deficits.
To help guide clinical decision making, it may be helpful for you to first consult the American Academy of Pediatrics 2001 policy statement, “Counseling families who choose complementary and alternative medicine for their child with chronic illness or disability” ( Pediatrics 2001;107:598-601 ) and then consider a range of variables when discussing the use of CAM treatments with families. Some authors classify treatments as being safe, easy, cheap, and sensible (SECS) versus being risky, unrealistic, difficult, and expensive (RUDE) (Contemporary Pediatrics 2004;21:61-72), and using these terms when engaging parents in treatment decisions can be instructive for all parties. For example, there is limited high-quality evidence that omega-3 fatty acid supplementation is effective in treating autism symptoms, but the fact that this can be easy, inexpensive, and relatively safe for families to use may ultimately inform your decision to support a family’s trial of this with close monitoring. Additionally, it is important to explore whether families are seeking to replace other therapies with something novel and new, or are they looking for something to complement existing treatments/services? You should always, while being mindful of a family’s needs, values, and resources, consider first and foremost the use of treatments with established efficacy. Certainly CAM treatments – particularly those that are nonbiologic (pet therapy) – may positively augment standard interventions without potential significant harm.
With the increasing number of parents turning to CAM treatments for their children with autism (particularly when the parents themselves use CAM), you should be prepared to talk with families about their decision making and actively ask families if this is something that they’ve considered. Given that the research on many CAM treatments is in early stages, it’s not unique to perhaps feel ill prepared to make CAM recommendations to families. Often it’s helpful to share this “CAM illiteracy” with families and aim to work together in a nonjudgmental manner to evaluate and select individualized treatment programs based on factors of potential efficacy, safety, cost, and family values. Regardless of the intervention, you should establish, with all patients, reliable methods for documenting past trials of all treatments, evaluating target symptoms, monitoring clinical outcomes, and measuring adverse events.
You should work to provide realistic hope to families and acknowledge that some CAM treatments may work better for some children, but we often don’t have a great sense, from the current state-of-the-science of ASD treatment, as to who these kids may be.
Dr. Dickerson, a child and adolescent psychiatrist, is an assistant professor of psychiatry at the University of Vermont. He is the director of the university’s autism diagnostic clinic. Dr. Dickerson said he had no relevant financial disclosures. Contact Dr. Dickerson at email@example.com .