One story – an avalanche of false hope: the case of Parker Beck

Prof. RNDr. Vanda Boštíková, Ph.D.

Prof. RNDr. Aleš Macela, DrSc.

One example of how personal stories can contribute to the spread of false hope in medicine is the case of Parker Beck, a four-year-old American boy with symptoms of autism [1]. Parker was diagnosed with gastrointestinal problems, including repeated diarrhea and vomiting. Doctors therefore performed an endoscopic examination to determine the cause of the boy’s problems, and during this procedure, he was given a substance called secretin. Secretin is a peptide hormone produced by specialized S-cells in the Lieberkühn crypts of the duodenum (small intestine). Secretin reduces the secretion of gastric juice and thus regulates the acidity of the stomach contents entering the duodenum [2].

Shortly after the examination, his parents noticed that Parker was calmer, communicated better, and was more responsive to his surroundings. The parents shared their experience with the media; the case was then reported by the well-known American television program Dateline on NBC, which presented it as a possible “miracle” in the treatment of autism, which was subsequently commented on as “secretin and autism – a clue, but not a cure” [3].

After the report aired, many parents of children with autism began seeking treatment with secretin [4]. Some parents of children with autism claim that secretin administration helps improve eye contact, perception, social skills, speech and sleep patterns, attention span, and learning abilities. Based on these experiences, secretin has been administered to thousands of children, especially in the United States [5]. Although these were mostly subjective assessments by parents, the information provided prompted several studies to be conducted to verify the effect of secretin in children with autism. However, the studies did not demonstrate a long-term effect, only pointing out that treatment with secretin caused improvements in communication and social behavior in some children, but overall led to clinically insignificant changes compared to children who were given a placebo [6]. No dramatic changes were found in the quality of sleep or the behavior of children while awake [7].

Parker’s improvement after secretin administration was probably coincidental or related to other factors, so the origin of the changes perceived by parents remains unclear, as does their duration. It is also unclear from the studies conducted which categories of autism symptoms can be potentially treated with secretin. At first glance, it seems unlikely that an intestinal hormone regulating bicarbonate levels in the stomach could affect brain centers. However, studies focusing on the relationship between dysbiosis and autism symptoms suggest that changes in the gut microbiome could affect the gut-brain axis and alleviate autism symptoms [8, 9].

Nevertheless, treatment of autism with secretin is, at best, only a hope. Parker Beck’s story shows how easily one well-intentioned hope can turn into an avalanche of false hopes. One emotional story has convinced thousands of people that there is a new cure, even though science has not yet confirmed this. In medicine, we must always rely on verified data and scientific evidence; relying on individual cases or personal experiences, no matter how interesting, powerful, and impressive they may be, often leads to a waste of money, time, and energy and, more seriously, can lead to a departure from standard treatment methods that have a proven effect.

References

1. https://www.nytimes.com/2004/01/06/us/trials-end-parents-hopes-for-autism-drug.html
2. Chey WY, Chang TM. Secretin, 100 years later. J Gastroenterol. 2003;38(11):1025-35. doi: 10.1007/s00535-003-1235-3. PMID: 14673718.
3. Schutt CE. Secretin and Autism: A Clue But Not a Cure. NAARRATIVE, Number 4, Winter 1998 • Newsletter of the National Alliance for Autism Research • 1-888-777-NAAR
4. https://judyforeman.com/columns/clues-still-no-cure-autism/
5. https://www.henryspink.org/secretin.htm
6. Chez MG, Buchanan CP, Bagan BT, Hammer MS, McCarthy KS, Ovrutskaya I, Nowinski CV, Cohen ZS. Secretin and autism: a two-part clinical investigation. J Autism Dev Disord. 2000 Apr;30(2):87-94. doi: 10.1023/a:1005443119324. PMID: 10832772.
7. Honomichl RD, Goodlin-Jones BL, Burnham MM, Hansen RL, Anders TF. Secretin and sleep in children with autism. Child Psychiatry Hum Dev. 2002 Winter;33(2):107-23. doi: 10.1023/a:1020778108068. PMID: 12462350; PMCID: PMC1201388.
8. Iglesias-Vázquez L., Van Ginkel Riba G., Arija V., Canals J. Composition of Gut Microbiota in Children with Autism Spectrum Disorder: A Systematic Review and Meta-Analysis. Nutrients. 2020 Mar 17;12(3):792. doi: 10.3390/nu12030792. PMID: 32192218; PMCID: PMC7146354.
9. Hrnciarova J., Kubelkova K., Bostik V., Rychlik I., Karasova D., Babak V., Datkova M., Simackova K., Macela A. Modulation of Gut Microbiome and Autism Symptoms of ASD Children Supplemented with Biological Response Modifier: A Randomized, Double-Blinded, Placebo-Controlled Pilot Study. Nutrients. 2024 Jun 21;16(13):1988. doi: 10.3390/nu16131988.

*This text has received support from the National Recovery Plan under project 1.4 CEDMO 1 – Z220312000000, Support for increasing the impact, innovation, and sustainability of CEDMO in the Czech Republic, which is financed by the EU Recovery and Resilience Facility.