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Secretin
A Controversial Treatment for Children with Autism

In October 1998, Victoria Beck, a mother of a child with autism, appeared on "Good Morning America" and "Dateline" explaining that the hormone secretin (which was initially given to her son in early 1996 during an endoscopy) had caused her son’s development to improve substantially. After the show aired, physicians from all over the country were inundated with requests from parents to have their children infused with this "miracle drug." Secretin soon became the drug that gave hope to thousands of parents of improving their child’s ability to communicate and interact with others.

In December 1999, however, the New England Journal of Medicine published the first formal report of a controlled study involving the use of secretin with children who have autism. The study, which was conducted at the Olsen Huff Center for Child Development in North Carolina, showed that there was no benefit seen in children with autism or pervasive developmental disorder (PDD) after a single dose of secretin. While the results of this study were somewhat discouraging, the medical professionals involved with the study clarified that it was a short-term study and that significant changes involving the brain are unlikely to occur in days or weeks. In addition, they stated that the study involved only a single-dose of secretin and that multiple doses of the drug may provide positive results.

Following the North Carolina study, a team at the University of California, San Francisco (UCSF) decided to conduct a similar study regarding the use of secretin for improving communication amongst children with autism. The study was led by Melvin Heyman, M.D., a pediatric gastroenterologist, Jenifer Lightdale, M.D., a clinical research fellow, and a team of autism experts from the Langley Porter Psychiatric Institute at UCSF. This study was also in response to the numerous reports that secretin may be a true treatment for children with autism. "We began the study because we were concerned that parents and health care providers did not have sufficient scientific information to evaluate secretin’s potential effects," said Lightdale.

This latest study included 20 children with autism, ages 3-6 years. Each child received a formal language test before the intravenous infusion of secretin and four follow-up tests one, two, three and five weeks after the infusion. Experts used a standardized test called the Preschool Language Scale-3. The results, which were just reported May 13, 2000 at the Pediatric Academic Societies/ American Academy of Pediatrics meeting in Boston, were the same as the previous study: no child showed significant changes in either receptive or expressive language.

Autism expert Bryna Siegel, Ph.D., who was a co-investigator of this most recent study said, "A true, dramatic change in skills and behavior would have been a surprising result after a dose of a drug. The claims made for this drug do not hold up well to any neuro-developmental model of how new skills are acquired. Language ability depends on changes in the brain as the child goes through activities that stimulate the acquisition of vocabulary and grammar structure. The child has to develop a two year old's language ability to go on and learn to speak like a three year old. A pill can't do that for him."

Ironically, the survey given to parents following the study showed that 15 out of the 18 sets of parents reported that they felt their child had shown moderate to significant improvements in language skills following the secretin infusion. Dr. Siegal, however, explains the difference in what the parents report versus what the medical experts report as a "very good example of placebo effect." Dr. Siegel further said, "By definition, the placebo can be expected to cure whatever ails you. In the studies of secretin, these parents saw differences in eye contact, in attention, in use of words - any activity that seemed like an improvement was attributed to the drug."

While both studies have shown no significant changes in children who have been given a single dose of secretin, the question still remains as to whether multiple doses of the drug will have a more positive effect. Therefore, Repligen Corporation, a biopharmaceutical company that specializes in the discovery of therapeutics for autism, is planning on conducting a larger study which will involve up to 140 children with autism, ages 3-6 years. Each child will receive three treatments and a thorough follow-up evaluation over a 10 week period. The primary objective of this study is similar to the previous studies: to determine if secretin improves the social and communicative deficits of autism. The study is expected to be completed by the end of 2000.

For more information regarding the studies of secretin as a form of treatment for children with autism, please visit the following websites:

 

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