Autism Consulting Service

for autism, Asperger's and PDD-NOS

The following is a paper that I wrote about the use of secretin for children with autism for a family whose child improved dramatically while on transdermal secretin. It is also an example of the amount of research that I go through before I come to any conclusions (see bibliography).

As with every treatment for autism, secretin does NOT work for everyone. However, it has made a huge impact in the lives of many on the spectrum so it should not be ignored. I find that the main symptom common to those who improve with secretin is the behavior of mouthing objects, It appears that they are trying to increase their production of secretin by constantly sending messages to the pancreas via their salvia and stomach to produce more.  At this point in time we are measuring and increasing the level of secretin to our clients with the SCIO since so many in the medical community are  not willing to cooperate, do the research themselves or make the effort to really understand autism .

Secretin as a Treatment for Autism

Gail Gillingham Wylie, MSc.

Autism Consulting Service, Edmonton, Alberta, Canada  

Autism is a profound developmental disorder characterized by deficits in social interaction, impaired communication and repetitive behaviours. Autism was once considered a rare disease, but recent studies have indicated a prevalence rate for autism in children of 1 in 300 or more, which is higher than leukemia, cystic fibrosis and multiple sclerosis combined. At this point there is no known single cause or cure for autism. For years there has been an assumption that specific brain abnormalities are at the root of this condition, but no evidence has ever been documented to support this hypothesis. Medical research is now focusing on the realization that most children with autism have some medical disorder or another. These  include immunological problems, allergies, and gastrointestinal difficulties. Doctors are beginning to define autism as a medical disorder, not a psychiatric based on the reality that everything in the body is interconnected. The new assumption is that autism is not one single condition, but a group of symptoms which result from a body in extreme stress for one medical reason or another. The actual cause of this stress can vary widely from one person labelled with autism, to another.

There are no medications currently approved by the FDA to address the social and communicative deficits which are the core symptoms of autism. Existing drug therapy is limited to the off label use of drugs to control certain behaviours such as hyperactivity, obsessive thoughts of behaviours, or aggression with very little evidence showing their effectiveness for autism. There are only two medications for autism which have passed from the Phase 1 level of drug trials to Phase Two. These are Haldol (a psychotic medication which is no longer used for autism) and a hormone, which is called secretin. Secretin is currently in the Phase 3 level of research, which means that it has gone beyond any other medication treatment for autism in the research process. In the initial studies a porcine secretin was administered intravenously. This has now been replaced by a synthetic secretin which is administered transdermally. This reduces the amount of trauma to the child during administration, increases the level of safety and reduces the actual cost of the product. 

Secretin is a natural hormone produced by the human body to aid in the process of digestion. Everyone produces secretin, even most people with autism. After each meal, as the stomach empties its contents into the upper small intestine, there is a pulse of secretin released into the blood. Secretin is a mixture of 12 of the 20 amino acids we find in humans. It consists of a single chain of 27 amino acids and is referred to as a peptide hormone. Hormones are used as messengers by our bodies. They are released into the blood stream in response to a particular stimulus to deliver a message to a more distant site or target.

The stimulus for secretin comes from specialized cells lining the upper small intestine which detect the arrival of the acidic contents in the stomach. Further digestion requires action by the pancreatic enzymes which work best after the acidic stomach contents are neutralized by the alkaline digestive fluids produced by the pancreas. Secretin is released by the “S” cells in the duodenum when triggered by the acidic pH of the stomach contents. It enters the general circulation of the blood stream. As the blood flows through the pancreas, the secretin molecules bind to the receptors on the pancreatic acinar cells (the target tissue) which causes an increased production of the alkaline digestive fluids. These are  transferred to the stomach to decrease the level of acidity making the digestive process more effective.

The hormone secretin has been known for at least 20 years. Medical use to date has been limited to test pancreatic function which is approved by the FDA. A small amount is injected into the blood stream and the amount of bicarbonate, which appears in the bloodstream, is measured a short time afterwards. This is how it came to be of interest as a treatment for autism. A young child with autism received a dose during testing on his gastrointestinal system and showed immediate improvement in his autistic behaviour, his ability to communicate and his willingness to socialize with others. His parents pinpointed the secretin as the stimulus for this change and convinced their doctors to try more. Since then hundreds of children and adults with autism have received secretin intravenously or transdermally.

The immediate question that concerned scientists, who continue to believe that autism is due to an abnormality in the brain, was how secretin could  affect the brain to produce a change in the behaviour and the social and communicative responses of children with autism. At this point these scientists have only speculated answers for this question, with little data, other than the actual change in behaviour, supporting their thesis. They summarize their work to date as belief that secretin must switch on sustained production of something in the brain that sustains the behavioural change.

When we talk to the people with autism who have had positive results when secretin was administered either intravenously or through the skin, we get a different answer. This supports the new research on medical causes for autism. They claim that “their guts were on fire” at all times, before the introduction of secretin. Until secretin was administered, they had no idea that their stomachs could feel any different so they never shared these feelings with anyone. They claim that this fire can be temporarily reduced by the use of such products as Pepto-Bismol, but secretin does a better job in reducing the pain, and it’s effect lasts for days. The use of secretin also provided them with the ability to actually taste and feel the differences in the food one eats, as the numbness in their mouth was gone. The main impact of their body  was the elimination of the pain. This lead directly to an increase in their comfort level and a decrease in their level of stress and anxiety. Lower anxiety, in turn, allowed them to interact more easily with the world around them.

As the adults continued to take secretin, they discovered another facet of it’s use. When they receive too much secretin they experienced nightmares and sensory overload. The more secretin applied, the greater the sensory overload and feelings of dizziness. They had to experiment with different levels to find the optimal amount for each individual. For example, one man claims that .8 clinical units per day combined with the residual build-up in his body  provides the therapeutic level which is most helpful for him.

The original research study focusing on secretin as a treatment for autism had three subjects. All three had a diagnosis of autism and each also suffered from chronic diarrhoea.  All three showed a mild inflammation of the oesophagus, the stomach and the duodenum through biopsies. The alkaline level in their stomachs was measured after the administration of the secretin, and all had an increase in the pancreatobiliary fluid flow rate and an increase in alkalinity in the stomach. Their chronic diarrhoea was resolved within 5 weeks of the secretin infusion and all had dramatic improvements in their behaviour including eye contact and expressive language.  Further doses resulted in further improvement. The researchers attributed these behavioural effects to the administration of secretin.

Since then there have been several different studies involving the use of secretin as a treatment for autism with larger numbers of subjects. The main criteria for each subject was a  diagnosis of autism. There has been an interesting pattern of results throughout these studies. Each study has a group of children who show dramatic improvement, a group that show no change, and a group that actually get worse. Due to this pattern, the each study claims that the results are not “statistically significant”.

If we go back to the experiences of adults with autism who have taken secretin, we may be able to explain this pattern of research results. Perhaps there are a certain number of people diagnosed with autism who do not produce the secretin when their stomachs become acidic. Although, the medical community claims that  there is no known disease attributable to a deficiency of secretin, it is logical that the direct result of a lack of secretin would be “fire in the gut” due to acid build-up.  People who do not produce secretin are in pain at all times. Perhaps this leads directly to their autistic symptoms as their body is experiencing high levels of stress. The administration of secretin lowered this pain level as the pancreas now supplied the alkaline substances for the stomach. The decrease in pain lowers their anxiety and allows the interaction with others to be easier. Other people, with the label of autism, may have other medical problems. The administration of secretin has either no effect on them, or creates a situation in which the level of secretin in their bodies is raised too high. Too much secretin increases their level of sensitivity to sensory stimulation which, in turn, increases their level of anxiety and their autistic response.

The improvement for those children with autism, who have positive changes after the administration of secretin, must not be taken lightly. At this point researchers are focusing in on those groups specifically to determine  biological markers which go beyond the diagnosis of autism to determine which  of our children will benefit most from this treatment. Symptoms currently being considered include such factors as chronic diarrhoea, solid food in bowel movements, a temporary positive response to anti acidic products such as Pepto-Bismol and the use of repetitive stimulating behaviours which focus on the mouth. Until these markers have been determined, it has been suggested that a clinical trial of transdermal secretin is appropriate protocol in almost all cases of autism. One treatment will determine whether it helps or not. If it does, treatment should continue until we can discover how to turn on their production of secretin in the duodenum again.

References

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Carey, T., Ratliff-Schaub, K., Funk, J., Weinle, C., Myers, M. and Jenks, J. (2002) Efficacy of porcine secretin in children with autism and pervasive development disorder. Journal of Autism and Developmental Disorders, 32(3), 153-160.

Chez, M.G., Buchanan, C. P., Bagan, B. T., Hammer, M. S., McCarthy, K.S., Ovrutskaya, I., Nowinski, C. V., & Cohen, Z. S.. (2000). Secretin and autism: A two-part clinical investigation. Journal of Autism and Developmental Disorders, 30(2), 87-94.

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Last modified: 11/12/09