Letter to Lenny Schafer, Schafer Autism Report
Wednesday, 21 May 2003

Continued sucess of lutein-free diet program in Malaysia

Dear Lenny,

I would like to update you on the continuing sucess of our work in
Malaysia, where over 100 children and young adults are now sucessfully
implementing the Sara's Diet Protocol. Additionally, we are involved in
the setting up of new autism centers in that country, where recovery will
be the stated goal.

First, to clarify some points about the Sara's Diet approach. We have
found that lutein intolerance is a common factor in most diagnosed
autists, including those with Asperger Syndrome and PDD. Lutein
intolerance does not show up on any allergy panel. The response is
immunogenetic, not allergic. This means that the immune system has decided
in the early part of pregnancy that this substance is non-self, and needs
to be removed. At first, this causes no problem as lutein has no function
in early pregnancy, but with the development of the visual system,
conflict arises because lutein is part of the protection and signalling
pathways for vision. This is reflected in the growing realisation that
autism and blindness overlap by as much as 30% (i.e a high percentage of
blind people are autistic according to professionals working with blind
children in Scotland) and that almost all autists have some form of visual
impairment or visual anomaly. Autism develops as a result of increased
lutein in the diet during early childhood, or when the immune system is
challenged by childhood infection or vaccination, or a combination of
these factors. Our experience is that, left untreated, the prognosis for
most cases of autism is a deterioration from mild to severe, the
development of severe behavioral problems and self injury. Our work is to
reverse this process and show the way to improvement and recovery. Our
work in Malaysia where we are working closely with the parents,
organisations and professionals is showing an almost 100% sucess rate in
bringing about improvement in diagnosed autists. After 6-8 months on the
diet, as many as 15 of the 70 original participants are virtually
symptom-free. For many, the only remaining deficit area is in speech
development, baring in mind that most of these are young pre-school
children who were non- verbal or virtually non-verbal when we first met
them and who developed autism before the development of verbal language.
We would like to see these sucesses repeated in many countries, so that it
can no longer be said that autism is an untreatable condition.

Removing gluten and casein is generally a good idea and often leads
unintentionally to the removal of many lutein sources and food dyes which
come with packaged wheat and dairy-based snacks. Additionally the removal
by many of soy, egg and corn remove more problem foods. But the problem
with elimination diets is that they do not address the essential nutrient
needs of the individual. Without every essential nutrient, people grow
sick eventually, and this is even more true of autists whose altered
metabolism means that even more attention has to be paid to nutrient
needs. The 'anti-yeast' diets as promoted by some popular books has caused
some of the most severe nutrient deficient diets that we have encountered
in our work, and these children are often in very poor condition. Powerful
chelation potocols and anti-yeast regimens put even more stress on the
vulnerable child. Supplementing with megadoses of vitamins also leads to
chemical imbalances.

Our program is basically the removal of lutein, soy protein, food
colorings including annato and beta-carotene. The removal of major sources
of gluten and casein is preferable but not essential in many cases. This
is determined on a case by case basis. We do not remove oats usually, and
butter, yogurt and cream cheese are often included as good sources of
essential nutrients. Many of the children in Malaysia are not on a strict
GFCF diet. Sara is not on a strict GFCF diet. The diet is also not sugar
free. The human body needs a wide variety of simple and complex sugars.
Eliminating sugars causes metabolic imbalances.

Individuals with autism often have serious eating issues and some have
extremely self-selective diets. Most often, the foods that the child is
refusing to eat are the colored fruits and vegetables. We need to start
from where the child is, and add foods that improve the nutrient status.
Special attention is paid to Vitamin A needs - usually a cod liver oil
supplement is used, as well as fish, liver and milk fat when tolerated. B
vitamins can be obtained in fortified cereals such as Rice Krispies,
fortified drinks such as Milo, or a good balanced supplement, but getting
B- Vitamins from food sources such as meat, fish, dairy, legumes, nuts and
grains is preferable where possible. The diet must include the
Acetylcholine precursor foods - soy lecithin (from Soy oil or chocolate),
arachidonic acid (Evening Primrose or Safflower Oil), DMG (Whole grain
rice or white yam), Choline (Potato, Tomato, Banana, Apple, Lettuce,
Peanut) and complex sugars (blueberry, raspberry, blackcurrant, white root
vegetables). Magnesium, Zinc, Manganese, Calcium and the other essential
minerals need to be properly balanced in the diet, preferably from food

Max Desorgher, World Community Autism Program