Complementary and alternative medicine (CAM), also called integrative medicine, is an approach widely used by families caring for individuals with autism. Research suggests that between 30 and 95 percent of children with autism spectrum disorder (ASD) have been provided with complementary or alternative medical treatment.
However, research on the safety and benefits of these approaches has been much less studied than have more traditional treatments. Because of this lack of rigorous study, many physicians and other healthcare providers find it understandably difficult to advise families who inquire about CAM treatments.
“We know that many parents do research on their own, and this includes comparing notes with other parents or individuals,” says Autism Speaks Treatment Advisory Board member Dr. Robert Hendren, D.O., a leading researcher in the field of CAM treatments for autism. “It’s important to remember that another person’s experience is not the same as evidence from a carefully designed and conducted study. Also, because autism encompasses a complex group of disorders, some treatments may work for one person but not another.”
Dr. Hendren is also director of child and adolescent psychiatry at the University of California, San Francisco (UCSF). In discussing CAM treatments with families and individuals affected by autism, Dr. Hendren begins by emphasizing the fact that these therapies should be used to complement, not replace, proven behavioral treatments for autism’s core symptoms and/or safe and effective medications for associated medical conditions.
Given the relative lack of information on the effectiveness of alternative treatments, Dr. Hendren also encourages families to consider time, effort and finances. “A costly intervention that lacks clinical evidence of effectiveness is an expensive shot in the dark,” he notes.
Autism Speaks is currently funding a number of studies on the safety and effectiveness of CAM treatments. The following are among the best researched and safest of these therapies:
More than half of all children with autism spectrum disorder (ASD) struggle with sleep disorders – insomnia being the most common. Sleep issues likewise affect many adolescents and adults with autism, though the prevalence in these age groups is not known.
Melatonin is a naturally occurring hormone that helps regulate the sleep-wake cycle. Supplements have been found to improve sleep and reduce insomnia in children with autism in studies funded by Autism Speaks.
Most recently, a pilot study by Vanderbilt University Medical School researcher Beth Malow, M.D., M.S., demonstrated that – when taken regularly – a nightly dose of melatonin helps children with autism and insomnia fall asleep. (Malow is also a principal investigator for Vanderbilt’s Autism Speaks Autism Treatment Network site.)
The 24 children, ages 3 to 9, who completed the 14-week experimental treatment, differed somewhat in the dose they required to fall asleep. Yet in all cases, a nightly regimen of melatonin (1 - 6 mg) helped with sleep onset within a week’s time. The benefits generally lasted for the length of the study, with no significant side effects. Parents also reported improvements in their children’s daytime behavior and reductions in their own stress levels.
More than a trivial matter, disordered sleep can worsen autism symptoms such as repetitive behaviors and social difficulties. In addition, parents and other caregivers report that autism-associated insomnia can take a toll on the entire household.
However, Malow and other experts caution that families and individuals dealing with autism-associated insomnia should consult a physician rather than try melatonin on their own. “There are lots of causes for sleep disturbances,” she explains. “It is vitally important to first identify and treat any underlying medical condition.” All children enrolled in the study were first evaluated by a medical specialist for potential contributory conditions such as gastrointestinal disease or sleep apnea and received treatment if needed. The researchers also taught parents how to implement good sleep habits with their children, and only those whose insomnia persisted after this behavioral intervention participated in the melatonin-treatment trial.
The positive results of this pilot study were very encouraging, says Autism Speaks Chief Science Officer Geri Dawson, Ph.D. The next step is to confirm the benefit noted in this small study with larger, placebo-controlled trials. This is important because placebos (inactive supplements or “dummy” medicines) can themselves have a beneficial effect, owing to the power of suggestion. In addition, studies with many more participants are needed to confirm melatonin’s benefit and safety.
Omega-3 Fatty Acids
Fatty acids are essential for the development and function of the brain. Omega-3 fatty acids are popular nutritional supplements and widely considered safe.
In 2011, for example, a pilot study funded by Autism Speaks enrolled 27 children, ages 3 to 8, diagnosed with ASD and hyperactivity. Some of the children were given 1.3 grams of omega-3 fatty acids each day, disguised in a pudding cup. The other children received the pudding without the supplement. Over the course of 12 weeks, those who received omega-3 fatty acids showed significantly greater improvements on validated measure of hyperactivity (an improvement of 2.7 vs. 0.3 points on the Aberrant Behavior Checklist).
It is important for patients and families to understand that there are significant differences in the quality of the various types of omega-3 fatty acids available over-the-counter. In addition, researchers have yet to determine the optimal dose of omega-3 fatty acids or the optimal ratio of the two essential components of these supplements (eicosapentanoic acid, or EPA, and docosahexanoic acid, or DHA) in the treatment of those with autism. In light of this, further study is needed before experts can make reliable recommendations.
Some evidence suggests that children with autism tend to be deficient in certain nutrients, and that these children show improvement when taking moderate doses of multivitamins. A daily multivitamin is a safe and reasonable option for persons of any age, especially for those who may not be eating a well-rounded diet.
Another popular CAM treatment involves injections of the vitamin methyl B12. The suggestion is that the vitamin protects against oxidative stress, signs of which have been found in some children with autism. In a small pilot study, Dr. Hendren’s team at UCSF associated the treatment with improved social behaviors, language and communication in 25 to 35 percent of participating children. Autism Speaks has funded an expanded study to help confirm safety and efficacy, as well as determine which individuals stand to benefit the most from this treatment.
Many parents have reported that probiotics ("good" bacteria) help ease gastrointestinal distress in their children . Autism Speaks is funding research in this new field of study. Please also see "Guidance on Probiotics."
Casein- and Gluten-free Diets
Many parents of children with ASD report that behavior improves when their children eat a diet free of the proteins gluten and casein. Gluten is found primarily in wheat, barley and rye; casein, in dairy products. In 2010, a randomized clinical trial on the use of casein- and gluten-free diets found insufficient evidence of clear benefit. However, this was a relatively small study (with just over 50 children), and it is possible that subgroups of children may benefit. The authors called for more studies to be conducted, and these are now underway.
Certainly, dietary changes can be worth investigating and trying, especially if there are other family members that have had difficulties tolerating gluten and/or casein in foods. And as mentioned, some, but not all, parents report improvements in behavior. If parents do decide to place their child on a casein- and gluten-free diet, it is important to take extra steps to ensure they do so in a safe and reliable manner.
Pediatric gastroenterologist Kent Williams, of Autism Speaks ATN center at Nationwide Children’s Hospital, in Columbus, Ohio, offers the following advice:
1. Consult with a dietary counselor such as a nutritionist or dietician. Although it’s easy to find casein-gluten-free dietary plans on the Internet, few lay people – or physicians – have the experience and knowledge to determine whether a restrictive diet is providing all the necessary nutritional requirements. This is particularly important for supporting normal growth and development in children. Keep in mind that foods containing gluten and casein are major sources of protein as well as essential vitamins and minerals such as vitamin D, calcium and zinc.
2. Bring the nutritionist or dietician a 3- to 5-day dietary history (writing down what was eaten and how much) and have this reviewed to determine whether there is a risk for nutritional deficiency. The nutritionist or dietician can then work with you to add foods or supplements that address potential gaps in nutrition.
3. Set up a reliable way to measure your or your child’s response. This should start before the diet is begun, with a list of the specific symptoms and/or behaviors that you would like to improve. In the case of a child, examples might include angry outbursts, inability to sit quietly during class, problems sleeping at night or refusal to speak with others.
4. Recruit teachers, therapists, babysitters, and others outside the family to help you objectively monitor these targeted behaviors and verify your perception of changes. If you reach a consensus that improvements are occurring, continuing the diet may be worth the cost and effort.
Remember that improvements may be due to the removal of just one of these proteins (gluten or casein) from the diet. Some parents report improvement with a casein-free diet, and others report improvements with a gluten-free diet. In fact, behavioral changes may be due to dietary changes other than the removal of casein or gluten. For example, the improvement might be due to the fact that the new diet replaces processed foods high in sugar and fat with healthier foods such as whole grain rice, fruits and vegetables.
These alternative explanations are important to consider because a strict casein-gluten free diet requires hard work and can be costly. For example, it may be difficult for you or your child to eat from the menus in a restaurant or school cafeteria. Birthday parties present another challenge. You’ll likely be faced with the task of sending or bringing special meals and treats whenever you or your child eats away from home.
For more information and resources, please see our treatment sections on Medicines for Treating Core Symptoms and Treatment for Associated Medical Conditions, as well as our sections on Symptoms, Diagnosis, Learn the Signs, Your Child’s Rights, Asperger Syndrome and PDD-NOS. We also offer a number of resource-packed tool kits for free download (here and here). They include our 100 Day Kit for families who have a child recently diagnosed with autism. These resources are made possible through the generous support of our families, volunteers and other donors.