Celiac.com 12/26/2007 - Can children with Autism Spectrum Disorder eat their way out of their cocoons?
Eight years
ago I knew little about autism. Fifty years ago I heard that a distant
acquaintance of mine had an autistic child. It was extremely unusual at the
time. I needed it explained to me and was told that the child was almost totally
unresponsive.
Recent statistics show that between one and one and a
half million people in the USA are afflicted with autism, making it the fastest growing developmental
disability. There has been a thirteen percent increase
in autism since 1990.
The term "autism" was
first coined by Eugen Bleuler a Swiss psychiatrist, and the term was also applied to those with adult schizophrenia. Initially parents were blamed and
psychological rejection was cited as a possible cause, but over time a greater understanding evolved and an analysis of
symptoms and protocols for their treatment developed.
If we examine
the history of dietary intervention for celiac disease, according to
Elaine Gottschall's
Breaking the Vicious Cycle, initially the Specific
Carbohydrate Diet was widely favored . Only later on did the
gluten-free casein-free diet begin to eclipse the Specific Carbohydrate Diet for the management of celiac disease, following a small
study published in Lancet in the U.K., and the diet gained enormous
popularity which has been maintained to the present. Researchers
published results of their work with the
gluten-free casein-free diet
for autism. Many people with autism noticed improvements once gluten and dairy products were removed
from their diets. According to some estimates 60% of people with autism experience positive
effects from the diet, and there are some reports of people recovering completely from Autism Spectrum Disorder. However,
there is a subset of children who do not respond to the diet and get stalled or
plateau at some point, and these people must often seek other treatment avenues.
Less than
ten years ago a few adults reported that the Specific Carbohydrate
Diet was fostering encouraging progress in their Autism Spectrum Disorder children.
Gottschall believed that in addition to gluten starches and certain
sugars were at the root of digestive disorders. A small support group formed
which followed the Specific Carbohydrate Diet to treat Autism Spectrum Disorder, and this group has grown from a handful to several thousand
since its inception. The majority of its members transitioned from the gluten-free casein-free diet. Some people
were told incorrectly that the Specific Carbohydrate Diet is an extension of the gluten-free casein-free diet, or that it is only suitable
if the gluten-free diet fails. The protocols about food restrictions and
contamination differ. The Specific Carbohydrate Diet is, however, a unique stand-alone diet.
Although
children with autism who are on the Specific Carbohydrate Diet are in a statistical minority compared to those on the gluten-free casein-free diet, anecdotal reports indicate that their success rate is nearly 80%. It often turns out that some of those who initially
fail have not followed the diet correctly, and they fare quite well when they start it over and do it correctly. In several small studies the Specific Carbohydrate Diet outperformed the gluten-free casein-free diet in the treatment of autism. A
large scale formal study could cost up to one million dollars and therefore has
not been conducted. In the absence of such studies mainstream medicine
has bypassed or dismissed the Specific Carbohydrate Diet as inconclusive, but some doctors have commented that since
it is a healthy and balanced diet it is worth a try. One concern is that
people will abandon their medication, but this idea is not advocated by the support group.
I
became interested in the autism-Specific Carbohydrate Diet connection when Elaine
Gottschall invited my support on the Internet list called "Elaine's
Children," which was renamed subsequently renamed pecanbread@yahoo.com (
www.pecanbread.com). When
I began to read the stories of improvement, progress in behavior and
digestion, and of some who recovered from Autism Spectrum Disorder, I literally got chills
. I began to archive those stories and combined several in a piece
which I submitted to a parenting magazine. The editors were very
interested but insisted on having a gluten-free casein-free diet author comment and counter my
story. Since I do not view dietary intervention as a competition the
article was withdrawn.
I am not sorry. Dietary intervention must
not be a contest. The diet that WORKS is the diet to choose. That
choice may affect the entire future of a young human being and of their
family. It is critical for parents to explore, research, connect with
others and become informed so they can select the best option to fit
their needs.
If you want to read more about Elaine
Gottschall be sure to read "All Her Children" at Pecanbread.com, and decide if this is a diet that could help your family.
Editor's Note: Celiac.com supports
the idea that the Specific Carbohydrate Diet is gluten-free and can be
very helpful for many people, depending on their situation. We
disagree, however, with the assertion that Elaine Gottschall makes in
her book Breaking the Vicious Cycle that people with celiac disease can be cured by the Specific Carbohydrate Diet after being on it for a certain time period.