In This Section

Evaluating Complementary and Alternative Medicine (CAM) for Treating Symptoms of ASD

AddtoAny
Share:

Parents often share information and trade stories about therapies they have tried. You may have heard from other parents that a particular Complementary and Alternative Medicine (CAM) therapy, like a gluten-free diet or a dietary supplement, worked for their children on the autism spectrum and that you should try it, too. While this information is encouraging and might be worth considering for your child, it is still important to do your own research first, and to come to your own conclusions about whether or not a treatment is right for your child. Your child is unique and, therefore, may respond differently than another child to the same treatment.

You may have heard that CAM is controversial – some therapies more than others – in the eyes of people who practice conventional medicine. This is because not a lot of rigorous, well-designed scientific research has been conducted on the practices, effectiveness, and safety of CAM. CAM therapies have varying levels of safety and effectiveness, ranging from relatively safe and effective if delivered or suggested by an experienced practitioner (like melatonin to aide in sleeplessness), to ineffective (such as secretin), to downright dangerous resulting in worsening of symptoms, serious side effects, or even death (like chelation). For these reasons, it is important to approach CAM with caution, logic, and as much information as you can gather before beginning.First, seek out research studies on the CAM therapy about which you want more information. Then, talk with your pediatrician.

Seek out research studies on the CAM therapy for the symptom(s) you wish to treat Research studies on CAM related to Autism Spectrum Disorder (ASD) are typically published in medical, psychology, or autism scientific journals. (If you are reading about a CAM therapy in an article or a book, check to see if academic research studies are cited.) You want to look for evidence-based research meaning there are several published, large, well-controlled studies that show how the CAM therapy changed children's behavior or health.In addition to checking if the research is evidence-based, you want to make sure that the study was published in a reliable journal. Reliable journals only publish peer-reviewed research, meaning that scientists other than the ones who conducted the study examined the research design, implementation, and results, and found them satisfactory and reasonable.

Compared to CAM, conventional medicine has undergone more scientific scrutiny and in many cases has been shown to be safe and effective in treating symptoms and/or behaviors for individuals on the autism spectrum. Information on evidence-based treatments and the scientific studies can be found in the National Autism Center's National Standards Report. Unfortunately, there are very few evidence-based research studies on CAM for children in general and for children on the autism spectrum. This fact is not to dissuade you from using "low risk" CAM (talk to your doctor to determine what is "low risk") but to inform you that there is no guarantee on the safety and outcomes of many CAM therapies. Moving forward, The National Center for Complementary and Alternative Medicine (NCCAM) is sponsoring research designed to determine which CAM therapies are safe, whether they work for the conditions for which people use them, and, if so, how they work. Understanding this will help medical practitioners prescribe the safest CAM treatments for particular symptoms, with the goal of greatest effectiveness.

Checklist of things to consider while reviewing research studies:

  • What types of studies examining the intervention have been published?
    • Large, double blind, randomized control trials are considered the strongest type of evidence.
    • Anecdotal evidence is unreliable because each child responds differently to treatment; what may work for one child may not work for another.
  • How many studies have examined the intervention?
    • Look for more than one study, and note how many children participated in each of the studies.
    • Quality studies are published in peer-reviewed journals.
  • Are the results of these published studies the same? Did each group study the same things?
  • Make sure the study was for children, not just adults. Remember, children are not tiny adults, and research and treatment (dosage and medication reactions, for example) need to be approached differently.
  • Look for a placebo (like a sugar pill) in the study to see if the placebo changed anything. Sometimes patients given a placebo have perceived or actual improvement. This is known as a placebo effect and calls into question whether the CAM being studied is effective.
  • Look for any other treatments received at the same time as the treatment being studied. If more than one type of treatment was given at the same time, it would be difficult to determine which one was responsible for the reported change.

Talk with your pediatrician Talk with your pediatrician before implementing any CAM treatments. This will help ensure coordinated and safe care. For tips about talking with your health care providers about CAM, see NCCAM's Time to Talk campaign, hyperlinked below. Your doctor can also answer any questions that may have come up during your research on CAM. Checklist of things to discuss with your pediatrician before beginning CAM:

  • Tell your doctor which symptoms you hope to change by using CAM.
  • Ask if your doctor knows of any studies that show that these symptoms might change with this CAM.
  • Decide how you will keep track of symptoms/behaviors to see if they are changing.
    • Before you start CAM, start keeping track of the symptoms you are trying to change as well as your child's other behaviors and overall mood.
    • Implement only one treatment at a time. This will help you to accurately determine which treatment is working.
    • After you start CAM, keep track of the symptoms and behaviors in the same way as before you started.
    • Keep track of what happens when you stop giving the CAM therapy.
  • Decide how you will keep track of side effects.
    • It is important to notify your doctor about all side effects.

Follow the important precautions listed below to help minimize the risks of using CAM:

  • Select CAM practitioners with care. Inquire about the practitioner's training and experience and ask about:
    • Education and training
    • Experience in delivering CAM care to children
    • Experience working with other providers, including physicians, to ensure coordinated care
    • Licensing (some states have licensing requirements for certain CAM practitioners, such as chiropractors, naturopathic doctors, massage therapists, and acupuncturists)
  • Be aware that some dietary supplements may interact with medications or other supplements, may have side effects of their own, or may contain potentially harmful ingredients not listed on the label. Also keep in mind that most supplements have not been tested in pregnant women, nursing mothers, or children.
  • Tell your child's health care providers about any CAM therapy you are considering or are already using for your child. This helps to ensure coordinated and safe care.
  • Therapies should be used in addition to, and not to replace, proven behavioral treatments for core symptoms of ASD and/or in addition to safe and effective medications for associated medical conditions (for example, Attention Deficit Hyperactivity Disorder or anxiety).
  • "Natural" does not necessarily mean "safe." CAM therapies can have side effects, and these may be different in children than in adults.
  • If you decide to use CAM for your child, do not increase the dose or length of treatment beyond what is recommended (more is not necessarily better and can be dangerous).
  • If your child experiences an effect from a CAM therapy that concerns you, contact your child's health care provider.
  • Store herbal and other dietary supplements out of the sight and reach of children.
  • If you are a woman who is pregnant or breastfeeding, remember that some CAM therapies may affect your fetus or nursing infant.
  • Each brand of supplement can be different. These are not government regulated substances. You may not get the same ingredient in the same amount every time, and the medium the ingredients are dissolved in can also change.
  • CAM can be expensive. It is important to consider the effects of CAM on your family finances.
  • CAM is not usually covered by insurance.
  • Typically, you do not need to stop a conventional medical or behavioral treatment to use CAM; in many cases, they can be used together. However, for purposes of determining effectiveness, do not start more than one therapy at a time, and begin new therapies several weeks apart.
  • Beware of treatments claiming to "cure" autism. While symptoms of ASD can change and/or improve across the lifespan, ASD is a lifelong condition and is not "cured."

Additional Resources:

The Center for Autism Research and The Children's Hospital of Philadelphia do not endorse or recommend any specific person or organization or form of treatment. The information included within the CAR Autism Roadmap™ and CAR Resource Directory™ should not be considered medical advice and should serve only as a guide to resources publicly and privately available. Choosing a treatment, course of action, and/or a resource is a personal decision, which should take into account each individual's and family's particular circumstances.