Power of Exile

The Power of Exile -
 Autism, A journey to recovery


Introduction: Sara’s Diet
and the IDEA


  1. Sara
  2. Sandra
  3. The Journey begins
  4. Sara joins our Family
  5. Journal Notes
  6. Impressions
  7. Influential People
  8. Center Stage
  9. I believe in Miracles
  10. Miracles in Abundance
  11. A Second Rainbow
  12. Widening Horizons
  1. World travel on a Wing and a Prayer
  2. Asperger Syndrome (Sam’s story)
  3. Autism: a Causal Theory and Treatment Option
  4. A Change in the Weather
  1. Second Timothy
  2. Turning Blue
  3. Food Intolerance in autism
  4. Sara’s Diet
    1. Introduction to the restricted diet
    2. Essential nutrients from foods
    3. Practical help with implementing a diet program
  5. What is Lutein?
  6. Autism, Pigments and the Immune System
  7. South Africa, World Community Autism Program
  8. Eating disorder in autism
  9. Autism, Origin – A Plausible Theory
  10. Autism, putting it all together

From: Autism - a causal theory and treatment option
After working for six months for no pay, we were again homeless and penniless. Nevertheless we still had the computer and the determination to continue with our work, so when Angela dropped us off at a cheap motel far from anywhere, we checked in. There was a Waffle House up the street past the gas station, so Sandra got herself a job as a waitress again. I hooked the computer up to the Internet and we got down to work.
  We were sure that somewhere in the world there must be a journal or magazine that would be interested in Sarah’s story of recovery, so I sent out emails around the world. A response came back from a UK-based health magazine ‘Positive Health’ and they were interested, so we sat down and wrote ‘Autism, a causal theory and treatment option’ It was published in Positive Health magazine in September of 2000, and is still available on their website.  We include it here because it summarizes quite concisely our work up to that point:

At the time when autism was first described by Dr Leo Kanner and thus given an identity, there was little debate as to the field of medicine which would be called upon to develop expertise and treatments for this rare psychological condition. Under the psychological paradigm, advances have not been forthcoming.
  Physicians, researchers and specialists, often driven by personal agendas, have sometimes made ‘findings’ which are called ‘pieces of the puzzle’ by the autism community. These pieces do not always seem to fit together or even belong to the same puzzle.
  In our theory, a single cause, these pieces do fit together. In our theory autism is not a psychological condition – it is a neuro-gastro-immunological disorder resulting from an immunogenetic error during fetal development. At the time when the immune system is developing, the first immune cells must select a non-self substance which has crossed the placental barrier and react to this non-self substance in order for the immune system to proliferate. In the developing fetus there is no apparent function for a substance called lutein, a pigment which is used by the human at birth to protect the eyes from ultraviolet light. The immune system is developing just after neural tube closure which has been the time of reference given by some research that corresponds to brain imaging differences that are identified in autists. However, the slightly earlier ‘neural tube closure’ time frame would likely correlate to a population with co-occurring spina bifida – no such correlation exists. An immune system which identifies lutein as the non-self substance would result in a correlation to Retinopathy of Prematurity - this correlation does exist. An immune system reaction of this type would result in a correlation to a disturbance in pterin metabolism - this correlation does exist, and it would result in a correlation to mitochondrial disturbance and again this correlation does exist.

Successful Results of a Lutein-free Diet
The theory, lutein intolerance, is simple and as yet has not been subject to rigorous research. Since 1995 we have worked to provide recommendations to families and physicians treating individuals with autism. Our results include that 80% of our clients report significant and measurable results when a nutrient balanced, lutein free, soy protein free and casein/gluten restricted diet is implemented with an adequate and balanced intake of essential nutrients. 10% report complete alleviation of symptoms or declassification from autism. The complexity of the dietary intervention results from the unique needs of each individual, their current diet and the age at which sufficient dietary intervention is applied.
  The complexity of the dietary intervention needed results from the self-limited or restricted diets of the autists as well as the cascade of biochemical abnormalities that are a result of the immune system’s response to the non-self pigment pathogen, environmental factors as well as the unique make-up of each individual’s genetic information. This can be further complicated when a co-occurring disease, disorder or condition is present.

Opioid Excess Theory and the GFCF Diet
In addition to trypotophan/serotonin abnormalities, B6 and DMG reports, natural vitamin A supplementation and outcome there is research by Paul Shattock, Autism Research Unit (Sunderland), Dr Kalle Reichelt (Norway) and Dr Robert Cade, University of Florida which identify abnormal opioid levels in the autistic population. The opioid excess theory has resulted in vigorous use of gluten- and casein-restricted diets being implemented for autists around the world. The results vary and are complicated by factors that include that some autists are natural lutein avoiders while others crave lutein foods. Foods used to replace gluten- and casein-containing foods may include soy protein which contains genistein, forcing the conversion of tryptophan to kynurenine, another biochemical marker which is often elevated in the autist and in my research has been shown in some cases to be normal prior to the implementation of the gluten/casein-restricted diet and elevated after implementation of the gluten/casein-restricted diet and correlating to soy protein foods being added to the diet.

Natural Painkillers from our Immune System
Another biochemical marker, is the reported discovery of dermorphin and deltorphin in the autist’s urine. These opioids, which are said to be 2000 times more potent than pharmaceutical morphine, provide more evidence that the human immune system is responsible for the unique make-up of the autist. It has been established that the immune system macrophages release hemorphins and opioid substances through cathepsin manufacture. My personal experience as an asymptomatic individual with biochemical abnormalities similar, if not identical, to many autists has resulted in my life’s work – dietary intervention and autism. The release of the D-amino acid mu-opioids is very possibly a direct result of the immune system’s error during fetal development targeting lutein as non-self, leading to a cascade of biochemical (and immunogenetic) responses.

So, a simple immune system error has resulted in the need for providing a comprehensive approach to dietary  intervention. The individual’s genetic make-up and pigment metabolism reveal information usually considered to be inconsequential and include co-occurring ‘benign’ conditions such as carotenemia and vitiligo and the occurrence of strange bumps and/or blisters on the skin of autists. On the other hand, devastating disorders of pigment metabolism also co-occur with an autism diagnosis, the most well-documented being tuberous sclerosis and PKU.