Introduction: Sara’s Diet
and the IDEA
PART ONE –
PART TWO – EXILE
- The Journey begins
- Sara joins our Family
- Journal Notes
- Influential People
- Center Stage
- I believe in Miracles
- Miracles in Abundance
- A Second Rainbow
- Widening Horizons
PART THREE – RECOVERY
- World travel on a Wing and a Prayer
- Asperger Syndrome (Sam’s story)
- Autism: a Causal Theory and Treatment
- A Change in the Weather
- Second Timothy
- Turning Blue
- Food Intolerance in autism
- Sara’s Diet
- Introduction to the restricted diet
- Essential nutrients from foods
- Practical help with implementing a
- What is Lutein?
- Autism, Pigments and the Immune System
- South Africa, World Community Autism Program
- Eating disorder in autism
- Autism, Origin – A Plausible Theory
- Autism, putting it all together
From: Eating disorder in autism
Early research – Kanner and Asperger
Early research in autism began with two well-known doctors who followed
similar paths. The results of their work have become known today as Autism/Asperger
syndrome(s). Swiss psychiatrist Eugen Bleuler first introduced the term autism
in 1911. Autism and autistic stem from the Greek word "autos," meaning self.
The term autism originally referred to a basic disturbance in schizophrenia,
in short, an extreme withdrawal of oneself from the fabric of social life,
but not excluding oneself.
If we were to concentrate on this aspect solely then we would likely
agree that even a typical child will exhibit extreme withdrawal from the fabric
of social life when they are not well. When we, as humans, fall injured or
sick, then our symptoms - pain, weakness, nausea, delirium, stomach ache,
muscle contractions, breathing difficulties and the like - force us to withdraw
from social life. Kanner reported his findings in an article entitled ‘Autistic
Disturbances of Affective Contact’. Out of the 11 cases he reported, eight
mentioned an unusual relationship to food, or feeding difficulties in early
“Since 1938, there have come to our attention a number of children whose
condition differs so markedly and uniquely from anything reported so far,
that each case merits - and, I hope, will eventually receive - a detailed
consideration of its fascinating peculiarities.
Kanner Case 1 - Donald T: He was breast fed, with supplementary
feeding, until the end of the eighth month; there were frequent changes of
formulas. ‘Eating,’ the report said, ‘has always been a problem with him.
He has never shown a normal appetite. Seeing children eating candy and ice
cream has never been a temptation to him.'
Case 4 - Paul G: He vomited a great deal during his
first year, and feeding formulas were changed frequently with little success.
He ceased vomiting when he was started on solid food.
Case 5 - Barbara K: was referred in February, 1942, at
8 years, 3 months of age. She nursed very poorly and was put on bottle after
about a week. She quit taking any kind of nourishment at 3 months. She was
tube-fed five times daily up to 1 year of age…She began to eat then, though
there was much difficulty until she was about 18 months old.
Case 7 - Herbert B: He vomited all food from birth through
the third month. Then vomiting ceased almost abruptly and, except for occasional
regurgitation, feeding proceeded satisfactorily.
Case 10 - John F: The father said: ‘The main thing that
worries me is the difficulty in feeding. That is the essential thing, and
secondly his slowness in development. During the first days of life he did
not take the breast satisfactorily. After fifteen days he was changed from
breast to bottle but did not take the bottle satisfactorily. There is a long
story of trying to get food down. We have tried everything under the sun.’
John was born September 19, 1937; his birth weight was 7½ pounds. There
were frequent hospitalizations because of the feeding problem.
Kanner’s descriptions are fascinating, not least because they were written
before autism was categorized by the DSM-IV solely as a set of ‘abnormal’
behaviors. Kanner’s summary includes:
“giving the impression of silent wisdom . . .They are all unquestionably
endowed with good cognitive potentialities. . . They all have strikingly intelligent
physiognomies. In the eight ‘speaking’ children: They were, with the
exception of John F., capable of clear articulation and phonation. Naming
of objects presented no difficulty; even long and unusual words were learned
and retained with remarkable facility. Almost all the parents reported, usually
with much pride, that the children had learned at an early age to repeat
an inordinate number of nursery rhymes, prayers, lists of animals, the roster
of presidents, the alphabet forward and backward, even foreign-language (French)
lullabies. High IQ’s were recorded: ‘In the end he achieved an IQ of 140’.
‘When he was 1½ years old, he could discriminate between eighteen
symphonies’. In marked contrast to the DSM-IV categorizations which are almost
exclusively negative in their wording (‘abnormal’, ‘restricted’, ‘impairment’),
Kanner gives a picture of exceptional children whose strange behavior was
not due to ‘feeblemindedness’.
Autistic children ‘let down’
With so many therapies reporting results, how can science continue to demand
studies for this population which are designed to look at a single element
of a single therapy for a small number of cases and expect to put forth results
which contribute any useable information for practical application? We can
cite the DMG study as a recent example where only 4 autistic children were
involved in the study. When ‘research’ like this reaches the parents who include
those 20% who, according to ARI (Dr B. Rimland), have had measurable responses
with DMG, the result is that parents do not trust the medical profession.
Statistically at least 5 children should have been included in this research
to meet the expected 1 in 5 that get results reported from previous research.
Is it really so hard to believe that parents do not trust the medical community
when, according to the National Autistic Society of the UK (NAS) as published
by UK Health 1999: “Doctors are failing to spot the signs of autism.
The families of autistic children are given ‘frighteningly inadequate’ support
by health workers, according to a survey. The National Autistic Society (NAS)
says 65% of parents of children with autism or Asperger syndrome had to see
three or more professionals before their child's condition was diagnosed.
Forty per cent said they waited more than three years for a diagnosis and
10% waited 10 or more years.”
A child referred for an assessment in the USA today might be put
on a 2½ year waiting list and the parents can expect a cost of $3000.00
(insurance not accepted). The diagnostic criteria presented in the DSM-IV
has failed to include some of the most prevalent characteristics which have
been described in this population from the earliest works of Kanner and Asperger
to modern accounts, published papers and reviews. The MRC (Medical Research
Council) Review of Autism, Research Epidemiology and Causes, December
2001, for instance, bases it’s report on: ‘the Diagnostic Criteria For Childhood
Autism - International Classification of Diseases (ICD-10) issued by WHO (World
Health Organisation) 1993 (10th edition) and also makes reference to the
American Psychiatric Association’s Diagnostic and Statistical Manual, 4th
edition (DSM-IV)’. Neither of these include feeding problems, eating disorder
or ‘dislike of certain foods’ in the diagnostic criteria for the ASD population.
From another recent review from the Journal of Abnormal Child Psychology
June, 2001 ‘Does DSM-IV Asperger's Disorder Exist?’, we can see that ‘dislike
of certain foods’ has been set apart from the diagnostic criteria and is
included as an associated feature.
Other characteristics have been included in the DSM in such a way
that they are not adequately represented and include abnormal relationships
to light, sound, color (pigment) and vibration. Combined, these characteristics
represent the basic tools needed to understand autism, and had the research
focused on, rather than excluded these characteristics, then the information
which has been derived for this population over the last 50+ years - biochemical,
physical (anatomical), psychological and genetic - could have been put into
a format which would now include all of the pieces of the so-called puzzle.