Abstract | Summary | Original Article

Use of complementary and alternative medicine among children recently diagnosed with autistic spectrum disorder.

Levy SE, Mandell DS, Merhar, S, Ittenbach RF, Pinto-Martin-JA.

Journal of Developmental & Behavioral Pediatrics December 2003; 24(6): 418-423.

Question: What percentage of children newly diagnosed with autism have received complementary or alternative medical treatments?

Background: Complementary and alternative medicine (CAM) is used by a large proportion of the general population, but it has not been known how many children with autism have used treatments not prescribed by a physician. This study looked at the CAM practices used by the parents of 284 children newly diagnosed with autism at a centre. For the purposes of this study, the researchers divided types of CAM into different categories: 1) harmless biological treatments that have little or no research to back up claims for their effectiveness (such as vitamin supplements, GI treatments, and medicines used to treat Candida); 2) harmless biological treatments that have little or no research supporting their effectiveness but may make theoretical sense (e.g., the gluten-free/casein-free diet, the use of Vitamin C, and injections of secretin); 3) treatments that are potentially harmful and that have no research to back them up (e.g., chelation, injections of immunoglobulins, megadoses of Vitamin A, the use of antibiotics or antiviral agents, the ingestion of alkaline salts, or refusing immunizations); and 4) non-biological therapies that have no evidence base (such as craniosacral therapy, auditory training, or facilitated communication).

Participants: The charts of the 284 children seen at the Regional Autism Centre (RAC) of the Children's Hospital of Philadelphia between July 2000 and December 2002 were assessed for this study.

Design: Chart audit.

Methods: Trained assessors examined the charts of 284 children to look for reports of CAM use. Physicians who took the histories had asked specific questions regarding the use of complementary or alternative medicines, and used prompts such as naming diets or supplements to elicit the information from the parents. Instances of use reported in the charts were noted and categorized as above. The authors looked for any relation between CAM use and social factors, ethnic origin, length of wait for first appointment, whether the Regional Autism Centre was the place where the diagnosis was first made, and whether the child had any illnesses in addition to autism.

Main Results: This study found that 90 of the children (31.7%) were being given some type of CAM. Of these children, 48 (16.9%) were using a biological treatment with no evidence base; 44 (15.5%) were using a biological treatment with some evidence base; 25 (8.8%) were using a treatment that was potentially harmful and without an evidence base; and 11 (3.9%) were using a nonbiological therapy. 20.8% of the parents reported having used only one therapy, 5.3% had given their child two, and 5.6% had tried three or more therapies.

Latino children were 7.2 times more likely to have been given CAM. Children with additional diagnoses were 70% less likely to have been given CAM. Other factors that predicted CAM use were that the child under treatment was male, that he was African-American, and had had a diagnosis of autism made prior to attendance at the Regional Autism Centre.

Conclusions: This study found high rates of CAM use among the children at the Regional Autism Centre whose charts were examined. Many children (11%) were being given multiple treatments. The authors speculated on the reasons for the increased likelihood that Latino families would use CAM and concluded that there may be significant cultural reasons for their use that need to be explored. They also suggested that having been diagnosed by another clinician may have increased the wait time to be seen at the RAC and the children's age, thus increasing parental frustration about treatment outcomes.

Practitioners are strongly encouraged to ask parents about their child's use of CAM and parents should report their use. Some treatments are benign, but others may have serious consequences on their own, but especially in combination with prescribed medications.