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Dear Don,
Welcome to the bizarre reality of having a child with autism. It can make the
best people bitter, resentful and downright cynical.
At least half of the people I encounter on a daily basis are looking for a
'magic bullet', a drug that can make all the problems disappear. Most people
do not have the comprehension, or background to understand that diet can make
a dramatic difference in anyones life, be it a low fat, diabetic, PKU, gluten
free, etc.( It simply depends upon a person's biochemical and genetic
makeup.)This is also directly reflected in the medical community, as anyone
with celiac can attest to. There is little or no emphasis placed on the
'realities' of changing a diet, and less understanding of the biochemical
relationships. Indeed, when was the last time anyone had a specific
recommendation for vitamin therapy from their family physician? If a diagnosis
is made that require nutritional counseling, one is referred to a registered
dietician. As within the medical field, dieticians have areas of
concentration, ie, diabetes, heart disease, etc. Very little has been done at
all on autism, it is buried in the archives, at best. In fact, even amongst
the 'informed', there exists a great deal of dispute, as in the celiac
community..how much to eliminate, why, etc...
Unfortuneately, there are many 'professionals' that prey on the parents of
children with disabilities (almost any disability). They generally promise
the world, charge outrageous fees, and deliver little, if any, result. The
field of autism is particularly densely populated with these individuals
(that makes it very difficult for the 'honest' professionals). You have to
remeber that the disorder was originally described as a psychologically based
disorder, and then was followed by the description 'cold, unfeeling
parents'...the 'refrigerator mother syndrome', as it were, causing the syndrom
e. This sets up the family population for the less scrupulous, as the
almighty buck is so powerful.
There are a number of VERY reputable scientist attempting to define the
biochemical underpinnings of autism, and they are indeed looking at the fact
that at least 50% of the population does respond very well to dietary
intervention. I must disagree on the point made that researchers are always
in it for the money. I have personally done all my research without funding
(which has so much to do with the fact that my family lives well below the
poverty level). I am also personally aware of several other researchers that
continue their work, long after funds are depleted. It is quite interesting
that of the 150 grant applications to NIH in 1994 for research in autism,
only 6 were biochemically oriented.(And, those 6 all were linked to
serotonin...) All the rest were of a 'psychological' orientation. It remains
obvious, more than 50 years after the description of the disorder, that the
'professional community' still regards autism as a psychological/emotional
issue.
We never use the term cure during any of our presentations on dietary
intervention. In fact, we often open by saying that if someone is looking for
a cure, they are in the wrong room. We describe it as an additional method of
management, as autism is a multi-faceted disorder, and requires a multi-modal
system of approach. We offer parents, caregivers and practitioners enough
information to start them on a track that may eventually lead them to the
same conclusions many have already reached. The information must be
available, so that parents,etc., can make an informed decision, for or against
, and not have to rely so heavily on the existing predujices and unscrupulous
individuals that plague our community.
Anyway, don't take it too much to heart that you were 'poo-pooed'. Those that
want to know will continue to seek out the information. Those that don't,
won't You can't do anything about the decision they are making. And, if it
helps one person, or one family, isn't it worth it? It is not a cure...our
triplets have been on the 'diet' for 4 years this month. They are still
diagnosed with autism. They have made tremendous gains, many of which
dissipate immediately with any reintroduction of eliminated foods. Therfore,
we strongly credit the diet for having such a positive influence on their
lives. BUT our intervention plan is not restricted only to diet, and other
factors must be considered as well. We do not credit any single approach as
being the 'end all-be all' answer, and we try to keep an open mind. Of
course, we also try to find some logical, or scientific basis for trying any
new approach.
Well, I have rambled on long enough. Maybe no one will be able to thank you
down the road for the suggestions you made on the net, but
someone,undoubtedly, will be very grateful.Oh, and try not to judge the
community on such a terse response of one individual.(I am sure you won't...)
For the parents,
Beth
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