By Daniel B. Kessler, M.D.
Are alternative treatments harmful? Well, it depends on your definition of harmful. Here I relate the story of Secretin. Secretin is a hormone that helps to regulate digestive functions. It is also considered a neurotransmitter or chemical messenger, based on animal studies that demonstrate effects on the central nervous system. As a hormone, it exists normally in the body. Synthetic secretin is sometimes given intravenously to treat peptic ulcer and in the evaluation of pancreatic function.
A small, uncontrolled case series (reports of the experiences of three children on the autism spectrum who received synthetic intravenous secretin during a routine endoscopy evaluation for gastrointestinal problems) resulted in the funding of the largest controlled trial of an alternative treatment for autism ever conducted. The initial report noted that within five weeks of the secretin infusion the children experienced “a significant amelioration of” their gastrointestinal symptoms but also a “dramatic improvement in their behavior, manifested by improved eye contact, alertness and expansion of expressive language.” The same results were reported after a second infusion given weeks later.
Extensive media coverage caused parents to scramble to obtain this latest miracle cure for autism in the absence of any data to support its safety or benefit. Clinics were popping up in strip malls and corners where desperate parents paid upwards of $1,500 for infusions of secretin. They pleaded with their congressmen to make this treatment available and covered by insurance.
The federal government sponsored multiple well-controlled studies often comparing the results of secretin with an infusion of saline (salt water solution) as the control or “sugar pill.” Despite the suggestion of early benefits, no study showed significantly greater improvements in measures of language, intelligence, or autistic behaviors when compared to study participants who received saline. Both groups showed some improvement. There was simply no evidence that secretin worked as a treatment for autism.
The controversy continues with some individuals recommending oral forms of secretin and transdermal secretin. You simply cannot convince someone of something they don’t want to be convinced about. These parents are in many cases spending time, effort and a great deal of money to provide an unproven treatment for their child. They are not pursuing treatments that are more likely to provide benefit.
You may have guessed that I am not a big fan of alternative (often called biological) treatments for autism. Most have not been studied to the degree that secretin was. Those that have been studied have produced results that are just as disappointing. Most of these biological treatments are based on theories of autism that have yet to be proven. These theories are then used to “develop” treatments without scientific rigor. They deserve to be studied in a rigorous, scientific way and some of that work is being sponsored by the Autism Treatment Network. Until that work is done and results are known, it is unlikely that I will recommend those treatments to any family, but there is no shortage of families and doctors that will.
Next: Is autism really increasing?
Daniel B. Kessler, M.D., is a developmental and behavioral pediatrician and medical director of the Children’s Developmental Center at Easter Seals Southwest Human Development. His private practice, where he provides evaluation and treatment for children and adolescents, is located at Southwest Human Development.
The views he expresses in this series are based on his training, his reading of the literature and his more than 30 years of experience taking care of hundreds of kids on the autism spectrum. The series begins here.