Complementary and Alternative Medicine in Autism Spectrum Disorders
Jodi Santosuosso
Eileen M. Costello
Elizabeth B. Caronna
I. Description of the problem. Complementary and alternative medicine (CAM) is commonly used for children with autism spectrum disorders (ASDs). These therapies can be extremely costly, few have been well studied with controlled trials, their placebo effect can be considerable, and many can be associated with significant risks. Parents of children with ASD are often frustrated by the failure of more traditional medical therapies to treat the core symptoms of ASD and the slow progress they see in response to well-accepted educational approaches, and for this reason, parents may turn to the promise of cure from nontraditional practitioners. Many parents of children with ASD utilize both widely accepted educational therapies and CAM. Thus primary care providers should routinely ask all parents of children with ASD about their use of CAM and be prepared to discuss treatments, data regarding efficacy or lack of efficacy (when available), and potential risks.
II. Definition of CAM. The National Center for Complementary and Alternative Medicine defines CAM as “a group of diverse medical and healthcare systems, practices, and products that are not presently considered to be part of conventional medicine,” which includes mind-body interventions, biologically based practices, manipulative and body-based practices, and energy practices. Some treatments for ASD once considered “alternative” by healthcare providers are now so widely used that many now consider them conventional treatments. For example, sensory integration therapy for a variety of problem behaviors, and melatonin for sleep disturbances are now routinely recommended by many specialists in the field. (See Chapter 28 in this volume, “Treatments and Medical Management of Children with Autism Spectrum Disorders.”) Similarly, many unproven treatments are ubiquitous in the lay press and on the Internet. Anecdotally, many parents have tried a restrictive diet even before their child has been formally diagnosed with ASD on the basis of recommendations from other parents or information from the Internet.
III. Epidemiology and reasons cited for use of CAM therapies. The most commonly used CAM treatments for ASD fall into two categories—biologically based practices and manipulative body-based practices. Up to three quarters of children with ASD may be treated with CAM; biologically based treatments are the most common, with higher rates of use in children with more severe symptoms of ASD. More than half of parents report that CAM treatments, including modified diets, vitamins/mineral and food supplements, are beneficial for their children with ASD, and many do not perceive risk associated with approaches that are promoted as being “natural.” Unlike traditional educational or medical approaches, use of CAM gives parents more control over the therapy and, in some cases, promise of a cure. Despite considerable cost to families, as many of these therapies are “off label” and thus not covered by medical insurance, and risk of toxicity, many parents are eager to try unproven remedies that have been claimed to ameliorate symptoms of ASD.
IV. Biologically based practices. The controversy surrounding use of CAM for ASD is considerable and shows no sign of decreasing. The treatments discussed below are not meant to be an exhaustive list of all CAM used for children with ASD, but rather a list of several of the most commonly used treatments, an ever growing and evolving group of remedies not recommended by most medical practitioners.
A. Gluten-free casein-free (GFCF) diet. The elimination of the dietary proteins gluten (present in rye, wheat, and barley) and casein (present in dairy products) has been proposed as an effective treatment of ASD. True elimination of gluten and casein from the diet is difficult to implement and substitute foods can be expensive. The underlying theory is based on concerns about gastrointestinal problems (e.g., diarrhea) affecting digestion of proteins, food allergies, and abnormalities in gut permeability (“leaky gut” theory), allowing false opiate neuropeptides to cross the intestinal lining and enter the bloodstream, causing or exacerbating autistic behaviors. Although many parents report improvement in gastrointestinal problems on the GFCF diet, it cannot be recommended on the basis of available research data. Additional studies will be required to investigate whether there is a subset of children who do show true improvement of gastrointestinal symptoms or
symptoms of ASD when on this elimination diet. Children on the GFCF diet should be monitored for nutritional deficiencies. (See Chapter 28 on Management of ASD.)
B. Hyperbaric oxygen therapy (HBOT). Used conventionally to treat carbon monoxide poisoning, HBOT has been recommended as a treatment of ASD on the basis of a theory that there is increased inflammation in the gut and brain and an aberrant response to oxidative stress in individuals with ASD. There are no randomized controlled trials (RCTs) to support the use of this therapy. Parents should be aware of the expense of time and money involved in this treatment and a risk of complications from high-pressure oxygen, including fire.
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