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AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Sunday, November 18, 2001
INDEX:
* Our Journey (A Parents
Story)
* The MMR/autism controversy: should we
believe the IOM?
* Parent Soup Autism Spectrum Disorders CHAT ROOM
* Conferences Around the Country
***************************************
Our Journey (A Parents Story)
When Jason was born, I thought
everything was so perfect. A wonderful husband, a daughter who could melt
your heart, and now my beautiful baby boy. We were truly
blessed. My daughter Amanda was bright and cheerful. No “terrible
twos” for her. Jason was a good baby. He reached his milestones on
time. He loved people and they would comment on how sociable he
was. Jason was quick to give his big grin and enjoyed all the attention
he would get back. I remember when Jason was 18 months old and one morning I
went to get him out of the crib. I started to play a little game with
him. This particular morning, however, he wouldn’t look at
me. He kept turning his head. I remember thinking how odd,
for an 18 month old to be “rebellious”. Later that day, my parents
came over. Jason ran away from them and went to his bedroom, closing the
door and hid in the closet. I wondered if the terrible twos were starting
early. During that same day, I noticed Jason couldn’t point and he wasn’t using
the few words that he had, such as juice. In fact, he showed no interest
in juice, or his toys, or us. He was more interested in flipping through
the telephone book at high speed. It also seemed like he couldn’t hear us
talking. Our family doctor felt we should get Jason’s hearing
checked out. We went to several hearing clinics. It was confirmed
that Jason’s hearing was fine. We ended up at a pediatric specialist, who
gave us the diagnosis of PDD-NOS. As soon as I came home, I went to the library
looking up PDD. I spent the next week wondering why nothing is written on
this topic. Then I read some information that was titled
Autism/PDD. Slowly I came to realize the full implication of the
diagnosis. We spent another year going to appointments to the pediatric
specialist, who did not have any suggestions for us. He felt there was
nothing to recommend except for speech therapy. It was a dark and horrible
time. To realize there weren’t the services out there for your
neurologically damaged child, and no hope, no advice. Some waiting lists
we were able to get Jason’s name onto. But by the time his name would
come up in 2 or 3 years time, he wouldn’t be eligible because of his age by
then. Other waiting lists were closed because they were too full. I tried
to learn all I could. I read, talked with other parents of ASD children,
attended workshops, and then I had a turning point. I attended a lecture
given by Dr. Andrew Wakefield, in 1998. It was about the MMR vaccine, the
immune system and how it relates to autism. Something Dr. Wakefield said
struck a chord with me. An audience member asked, “Why doesn’t an adult
develop autism?” Dr. Wakefield replied, “They do. It’s called
Chronic Fatigue Syndrome”. He went on to explain why. I
didn’t take any notes, so I can’t write down exactly what he said, but
basically he explained how a person with Chronic Fatigue Syndrome has an immune
system that functions very much like that of a child with autism. So I thought
why not treat Jason like he has Chronic Fatigue Syndrome. I started
reading about it, questioning two people I knew who suffered with it and asked
our doctor about how this could relate to Jason. The doctor certainly
didn’t know what I was talking about, and I’m sure he thought I had
oversimplified and was feeling desperate. But I kept on reading. I read
about other immune system disorders, such as MS, Parkinson's, and chemical
sensitivity, trying to find some common thread. I read about
environmental illness, which is an adverse reaction to toxic chemicals in our
air, water, food and surroundings. I read how for environmentally
sensitive people, chronic exposure, even at low levels, can mark the start of a
chain of events that can damage the immune system. I learned about
aspects of environmental and nutritional medicine. I became interested in
how chemicals and metals become stored in the body and how we should be
breaking them down and eliminating them (called detoxification). The common
thread was that the disease seems to come about because of an overload that
alters the body’s natural balance. The accumulation of harmful substances
that can’t be disposed of by the body eventually leads to degenerative
diseases. So how did I tie this in with autism? I knew that
autistic children have serious abnormalities with their immune system.
Dr. Walsh in Chicago says he has found in his study of autistic children that
they are missing an enzyme (called metallothionein) that breaks down heavy
metals. Vaccines are under scrutiny because of the numerous active agents
such as live viruses, bacterial agents, preservatives, formaldehyde and
mercury. Dr. Wakefield found MMR antigen, along with mercury, lodged in
intestinal walls & the brains of autistic individuals. My first step I felt
was to reduce the toxic load on Jason’s body. I removed obvious
allergens. I pulled up carpeting; my moldy shower curtains were thrown
out and I changed my household cleaners to a natural product. I kept the
house fragrance-free, changing to unscented soap and shampoos and throwing out
scented candles. My next step was to look into Jason’s diet. I felt the
Feingold diet made sense, eliminating preservatives, additives, food colourings
and artificial colourings. All the things a body would have a hard time
breaking down and eliminating. I read about the gluten and casein free
diet while I was reading up on MS. I read how the wheat has so much
pesticide and it is more refined now than ever. I read about the hormones
added to milk. I decided to give the gluten and casein free diet a try.
It was later that I learned about the intestinal wall being permeable and
leaking, resulting in an opioid (drug-like) effect when gluten and casein got
into their system. I also tried to keep as organic as possible. I
went to the butchers to buy our meat (even went so far as to ask the butcher
what kind of feed the animals had eaten). I was lucky that it
wasn’t too hard to change Jason’s diet. He was only 3 years old, and
didn’t know he had a choice with food. I found some good recipes, and we
kept with the gluten and casein-free diet for 2 years. I knew nutrition
was important too. With autistic children there seems to be malabsorption
problems and mineral ratios out of the ordinary. I found out how
valuable oils (Essential Fatty Acids) were, as well as looking at different
testing we could do, such as testing for yeast in the intestines. There was an
overload of yeast in Jason’s intestines. We treated the yeast with a
prescription of anti-fungal medicine, started on vitamins, specifically
Super-Nu-Thera, and oils, namely flaxseed oil, and a capsule called Efalex that
contained a combination of oils (includes Evening Primrose Oil which you cannot
use if one has seizures). We could see Jason progressing in the right
direction. He was doing ABA (I set up a home-based program), speech
therapy and OT. We celebrated every success. I really felt the oils
helped Jason. There was one test where we had to take him off the oils
for a week. I thought I noticed a difference; he didn’t seem to have the
connection and eye contact as much. When he went back on the oils, he
perked up. Essential Fatty Acids are essential because the body cannot
make them and they are essential for the immune system. There is Omega 6
fats and Omega 3 fats. Most people get enough Omega 6 in their diets
(from sunflower and corn oil). However Omega 3 is generally deficient in
our diets. Also processed foods, preservatives, artificial colouring, and
artificial flavouring inhibits the body from using Omega 3. This Omega 3
is found in flax seed, flax seed oil, evening primrose oil (do not use if there
are seizures), fish oils and black currant seed oil. Through all this, I
watched Jason like a hawk. I was hoping I was following the right
path. I was thrilled when his speech therapist asked us what is it we
were doing at home. She seemed to be quite taken aback with Jason’s
progress. He went from hardly being able to imitate a sound to speech
(single words) within just a few months. To our delight he soon
crossed the line to becoming verbal, and able to get by without PECS. Our
ABA therapist told me she was having a hard time keeping up with his progress
(even saying I should write a book on him). We loved the compliments of
course, and that kept us committed to our continuing efforts. I was still
curious about detoxification of heavy metals. I had read a book called
“Turning Lead Into Gold”, written by a mother living in Vancouver who felt her
boys who were diagnosed with autism may have lead poisoning. It was
actually the first book I read after Jason’s diagnosis. I had gone
running to the doctor straight after reading it, wondering if perhaps Jason
really had lead poisoning instead of his autism label. The doctor said
heavy metal poisoning doesn’t happen in today’s world. I figured at the time,
I was desperately trying to get the autism label off any way I could. Little
did I know I would want to read that book again. I became interested in
how chelation was being used for autistic children. Chelation is the
method for removing toxic, (or heavy), metals such as aluminum, tin, lead,
arsenic and mercury. I read stories of improvements. I felt there
must be something to all this. A year ago there was the DAN conference (a
group of doctors and parents that started up in the States, calling themselves
Defeat Autism Now!). Chelation of mercury was the big topic. The
group of DAN doctors felt the bottom line is that the mercury is causing the
harm in our autistic children. That is what is responsible for
everything, from heightened sensitivities, to intestinal problems, to fussiness
with food. Mercury is also blamed for interfering with an enzyme needed
to break down gluten and casein. They feel once the mercury is removed
then the body just may be able to start to heal and that these problems may
resolve themselves. This is a huge controversial topic, and certainly not
supported by traditional medicine. In fact many doctors will say
chelation is downright dangerous. The fact that the mercury could come
from the vaccines has the medical field divided, not to mention that there is
mercury in our fillings and the vapor released from them, and the mercury
ingested through food. However, the more I read, the more I felt this was our
next thing to look at. The stats looked good, Dr. Cave announced them at
the DAN conference this year, saying that this was the most improvement they
had ever seen with any medical intervention. So we had heavy metal
testing done for Jason. Nothing showed up. I felt I needed to see a
DAN doctor to get more information and guidance. I got my map out and
starting looking to see where each one was located. I found a doctor we
could drive to (despite the temptation to find one in an exotic
location!). I did a bit of research and I managed to find some other
parents of ASD children that took their child to this doctor, and I was able to
get the feedback that I was looking for. We packed the car and drove to see
this DAN doctor for our appointment, with my long list of questions and some
test results in hand. After listening to our story, the doctor felt that
Jason’s immune system probably couldn’t handle the MMR and that it was probably
the DPT shot that was the “straw that broke the camel’s back”, resulting in
encephalitis (a brain injury). He also said it didn’t matter what the
heavy metal test results were really. The reason being because mercury
doesn’t release itself in the body’s urine, feces or sweat. It binds
itself to the cells, and therefore does not show up in any tests. If it
did, then it would mean a recent exposure of 3 weeks. After that, the
mercury stays within the body. The DAN doctors have put together a protocol for
removing mercury. It takes almost 2 years to do, and although simple and
they claim it is safe to do, needs to be done under a doctor’s guidance.
There can be side effects if the child is not ready for chelation. We
have been “preparing” Jason for chelation for almost a year now. The
child should be in a good nutritional status (which is difficult when they are
a picky eater, hence the supplements) and no yeast in the intestines (chelation
will most likely cause yeast, which can have side effects like irritability, so
you don’t want to start off with any yeast). This chelation medicine
(called DMSA) also removes some good minerals such as calcium from the body, so
it needs to be supplemented. We haven’t started chelation yet, and
hope to soon, we have a bit of yeast to address first. When I read the
stories from other parents of the progress they are seeing with chelation it
gets me excited to say the least. It is also a rocky road, lots of ups
and downs while the mercury and other metals are coming out, and will no doubt
be difficult at times. I was curious as to how these doctors know that mercury
is “lodged” in the system. I knew that Dr. Wakefield had found this in
his biopsies. The proof is apparently when the urine is tested at
intervals during chelation to see what heavy metals are coming out. Sure
enough the mercury is coming out (even though mercury wasn’t revealing itself
in any preliminary tests). Our latest venture was to start on a protocol set up
by Dr. Megson. She found that using Cod Liver Oil was very
beneficial. We replaced flaxseed oil with cod liver oil (there’s a
lemon-lime flavoured one from Kirkman’s!), and then followed up with a
prescription of medicine called Bethanecol. It stimulates the pancreas
(similar to the way secretin does). It apparently doesn’t work on very
many autistic children, but we lucked out. The very first day, we noticed
several exciting improvements, including more awareness, less spaciness, and
speaking clearer. The second day, there were more improvements, some
sentence structure, and better co-ordination, (suddenly playing hop-scotch, I
didn’t even know he could hop on one foot!). He has been on this for 3
weeks now and the benefits seem to have leveled off now, however Jason has
retained his improvements. This further proved to me that there is indeed
a gut-brain connection with autism. This is our journey so far. It’s not
over, but with the research that is going on, we are encouraged and feel
confident that there are indeed answers out there. I know this is based
on my personal viewpoint, but I wanted to share my story and help explain the
detoxification concepts and consider all the angles. Thinking about it,
perhaps much of science depends on personal viewpoints! Progress is being
made. There are interventions that can help and effective treatments are
available. But they work differently for each child, so it is our job to
investigate them thoroughly so you can make the best decision for your
child. Not an easy task by any means, as parents are put in a difficult
position of trying to determine what is best and having to research the
different opinions from the medical field. As we all know, our
children are our most precious resource and my wish is that our children will
benefit to some degree with our interventions, to have a better life and to
live to their full potential.
**************************************
The MMR/autism
controversy: should we believe the IOM?
Bernard Rimland, Ph.D.
Autism Research Institute
4182 Adams Avenue
San Diego, CA 92116
You have seen the headlines:
· Panel Finds No Link Between Childhood Vaccines, Autism (New York Times)
· No Links Found Between Childhood Vaccine, Autism (Los Angeles Times)
· US Expert Group Rejects Link Between MMR and Autism (The Lancet)
Is it true? Has the autism/MMR link been scientifically disproved? Absolutely
not!
The above headlines refer to a report published by the heretofore respected
Institute of Medicine (IOM), a branch of the National Academy of Sciences. You
may be thinking: If a prestigious independent group such as the IOM rejects the
autism/MMR connection, there must be good reason for doing so. Why shouldn't I
accept that verdict?
You shouldn't accept the verdict for several reasons. One is that the headlines
are wrong-the IOM did not reject the hypothesis that the MMR is a possible
cause of autism. The headlines were based on a press release written by
individuals with suspected links to the vaccine manufacturers, and did not
accurately reflect the actual statement by the IOM itself. Representative Dan
Burton, who has conducted intensive investigations of the evidence linking
vaccines to autism, and had insisted on excluding from the IOM panel those with
a conflict of interest, was furious when he found that individuals with ties to
the vaccine manufacturers had distorted the position of the IOM report to make
it appear to wholly reject the autism/MMR link. He noted that two of those who
issued the press release appeared to have ties with the vaccine manufacturers,
and he has vowed to determine the extent of their conflict of interest.
Burton's very normal grandson became autistic soon after receiving in one day
multiple vaccines containing 40 times the acceptable level of mercury.
The IOM report actually said: "Although the committee has concluded that
the evidence favors rejection of the causal relationship at the population
level between MMR vaccine and ASD, the committee recommends that this issue
receive continued attention.... its conclusion does not exclude the possibility
that MMR vaccine could contribute to ASD in a small number of children..."
This is an exceedingly weak statement, considering the evidence at hand (see
below), but it certainly does not reject a causal link. (And what does "at
the population level" mean?) Autism currently occurs in about one child in
130, far above the 1-in-2500 figure reported in the 1970s and 1980s, before the
MMR triple vaccine was introduced. And 1 in 130 is quite consistent with what
both the IOM and the vaccine critics claim: "MMR may cause autism in a
small number of children." The IOM statement thus supports, not refutes,
what the MMR critics contend. Despite the headlines, the safety of the MMR is
clearly not assured. The media have been duped by the medical establishment's
spinmeisters, with the intentional complicity of the IOM.
It is the medical establishment's burden to have proven that the vaccines are
safe, not the critics' burden to prove them unsafe. Safety testing should have
been done 20 years ago, when the MMR triple vaccine replaced the measles,
mumps, and rubella vaccines which were given separately, over a period of time,
and when the number of vaccines was 8 rather than 22. As we pointed out in ARRI
15/1, the UK expert panel charged with evaluating the safety of the MMR said,
"Being extremely generous, evidence on the safety [of the MMR] was very
thin," "The granting of a product license was definitely
premature," and, "In almost every case observation periods were too
short to include the time of onset of late neurological or other adverse
events. Interaction between vaccines had not been considered adequately with
multiple vaccinations and potentially ill-equipped immune systems."
A spokesperson for the Journal of Adverse Drug Reactions, in which the above
statements appeared, stated, "All the reviewers conclude that something
needs to be done about the MMR, and that there is a case to answer against the
vaccine."
The fact that the IOM report was misrepresented by the drug industry's
spinmeisters does not exonerate the IOM from having shirked its responsibility
to report that:
1. The MMR had not undergone adequate safety testing.
2. The practice of injecting increasingly large numbers of vaccines-many
containing large amounts of mercury and other toxins-into the bloodstreams of
immature infants was never evaluated for safety.
3. The Vaccine Adverse Event Reporting System (VAERS) is a travesty; fewer than
10 percent of side effects are ever reported.
4. Thousands of U.S. and U.K. families say-and can demonstrate with videotapes
and photos-that their children were normal prior to being vaccinated, reacted
badly to the vaccines, and became autistic shortly after.
5. A number of clinical laboratory studies demonstrate that vaccines may cause
chronic damage to the G. I. tract, immune system, brain, and other organs.
Several such studies have been reported in past issues of the ARRI. Wakefield,
Sabra, Singh, O'Leary and Kawashima are among the authors whose work documents
lingering vaccine effects on children on the autistic spectrum, compared to
normal controls.
The IOM report pays little heed to this evidence, instead focusing attention on
several deeply flawed epidemiological studies. None of the laboratory studies
were mentioned in the popular press reports.
Why did the IOM stoop to issuing such a devious, misleading report, thereby
incurring a permanent blot on its credibility? The IOM is an instrument of
mainstream medicine, and mainstream medicine has an enormous stake in the
public belief that vaccines are safe. During the past decade, mainstream
medicine has suffered a hemorrhage of patients who have been flocking to practitioners
of alternative medicine. Too often have prescription drugs been found more
dangerous than the illness. When the link between the use of unsafe,
mercury-laden vaccine and autism, ADHD, asthma, allergies and diabetes becomes
undeniable, mainstream medicine will be sporting a huge, self-inflicted and
well-deserved black eye.
Then will come the billion-dollar awards, by enraged juries, to the children
and their families. I can't wait.
Be that as it may, the parents of today are confronted with the question:
"What do we do about vaccinations?" Even as I write these words, the
California legislature is conducting hearings to decide if two more vaccines,
Hepatitis A and Prevnar, will be required before children can be admitted to
day care or kindergarten. Parents of vaccine-injured children are opposing
these measures. When will it end? Profit, not public health, is the goal of
many who advocate the use of all of these unnecessary vaccines.
Alternative medicine provides a much more rational approach to preventing
disease-including the diseases that are a direct result of vaccines-bolstering
the immune system. Even during the most horrific epidemics-the bubonic plague,
smallpox, polio, and AIDS-most humans escape death, despite exposure to the
pathogen. Why? Obviously, because their immune systems were competent to defend
the body. That is the immune system's job. Can we enhance the immune system's
capacity to defend us? Of course! Rely on nutrients, not drugs.
As we have pointed out previously (ARRI 12/1), providing the immune system with
the nutrients it needs by means of a high quality multiple vitamin/mineral
supplement, with extra amounts of vitamins C, A and E, as well as extra
selenium and zinc, can make a big difference in your-and your child's-vulnerability
to pathogenic viruses, bacteria and yeasts. Such fortification of the immune
system is especially important in the weeks preceding and following
vaccinations.
The Autism Research Institute has compiled, from several reliable sources,
advice to parents concerning vaccinations. To receive a copy, send a
self-addressed, stamped business size (#10) envelope marked "vaccine
advice" to ARI.
http://www.autismresearchinstitute.com/
**************************************
»§«:*´`³Y³´`*:»§«Y»§«:*´`³Y³´`*:»§«
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M o n d a y , N o v e m b e r 1 9 , 2 0 0 1
a t 1 0 p m E T (7 p m P T, 8 p m M
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w i t h H O S T P S
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i n P S S
o u p e r E v e n t s C h a t R o o m
»§«:*´`³Y³´`*:»§«Y»§«:*´`³Y³´`*:»§«
What is Autism? Aspergers Syndrome, Pervasive Developmental
Disorder/Not Otherwise Specified, Fragile X, Williams Syndrome are among some
of the Autism Spectrum Disorders, which have a number of symptoms -- including
impaired social interaction and communication -- and prognoses.
Heredity, yeast, food allergies, gluten, food additives, digestive disorders,
lack of vitamins, minerals, and other nutrients, exposure to radiation,
endocrine deficiencies, vaccinations, etc., have all been scrutinized for
possibly causing autism spectrum disorders. The only fact known right now
is that these are often severe developmental disabilities believed to have
multiple etiologies which may include one or more of these or none of them at
all.
Please join us in a chat and share concerns, support, funny stories, or simply
vent your frustrations as we discuss the issues and challenging factors that we
face while caring for our loved ones with an autism spectrum disorder.
---------------------------------------------------------------------------------------------------
Parent Soup Autism Spectrum Disorders CHAT ROOM
PARENT SOUP FEATURES
Reach For The Stars!
Brush up on baby, body language -- and
learn to read the facial expressions that help create meaningful dialogues with
their children even before they learn to talk.
Cindy
Crawford's Mothering Tips
----------------------
November Parenting Lesson
Raise happy and healthy kids with expert
advice on behavior, self-esteem and development. This month, Spoil-Proof
Your Kids: How to Raise a Child of Character with world-renowned parenting expert Dr. Dan Kindlon, author of Too Much
of a Good Thing.
----------------------
Family Traditions
Whether you are interested in starting your own holiday rituals or just want to
see what others are doing, these ideas, from moms like you, will be sure to
inspire and delight. 12
Holiday Rituals Your Kids Will Love
----------------------
Nursing While Pregnant?
Whether your pregnancy was planned or a surprise, do you find yourself nursing
while pregnant? This situation can be full of heartache, tears, joy and
happiness. Join us on for support and information. Pregnant and Nursing.
----------------------
Teenage Craziness!
Adolescence is a big transition -- an earthquake for the entire family. For
some families, it just means a little remodeling. For others, it's a major
disaster. Our Parents of Teens Chat is a perfect place to find support and
humor with a great group of parents who "share the experience."
Join us for the Parents of Teens chat,
Tuesday's at 11pm ET in Souper
Events.
~~~~~~~~~~~¤~~~~~~~~~~~
HOST PS Tam
Community
Leader - Chat Host
My Homepage - Blake's
Mom's Site
Make Parent Soup A Favorite
Place
Developmental Delays
Sunday 10pm ET PS Live Events Chat
Room
PS Casual Chat Room
Monday 10am ET
PS Casual Chat Room Monday
11am ET
Autism Spectrum Disorders
Monday 10pm ET PS Souper Events Chat Room
PS Parlour Chat Room
Monday 11pm ET
~~~~~~~~~~~¤~~~~~~~~~~~
**************************************
Conferences Around the Country
Illinois State Board of Education (ISBE)
Parent Meeting to discuss the delivery of special education services,
IEP's, Extended School Year, and other topics.
November 26, 2001
Chicago, IL Grundy County Special Education Cooperative
RBrown@isbe.net 217-524-4096
Teaching Communication Skills to Children with Autism
and other Developmental Delays.
Dr. Vince Carbone
November 26-27, 2001
Portland, OR
http://feator.org/carbone feator@agora.rdrop.com 503-282-3328
MARC November Meeting
(Maryland Autism Recovery Coalition)
Dr. Arnold Brenner will present information on the Biological Treatment
of Autism using the DAN protocol.
November 29, 2001
Rockville, MD Broome Building
Cyndi 301-216-0375 301-871-7527
Center for Autism and Related Disorders (CARD)
"Effective Treatments for Autism"
Topics will include Autism and Diagnosis by Doreen Granpeesheh, PhD, as
well as presentations discussing ABA, DTT, Visual Alternatives, and more....
November 30, 2001
San Diego, CA
858-278-6603
First Annual Conference on Applied Neurobiology
Presented by the American Academy of Neural Therapy
November 30, 2001
Seattle, WA
425-462-1777 www.neuraltherapy.com
Floor Time Workshop
Featuring Serena Wieder, PhD
December 5, 2001
Bloomington, MN Radisson Hotel South
651-647-1083 mpowell@goldengate.net
Visual Strategies for Improving Communication and Behavior
Linda Hodgdon, M.Ed., CCC-SLP
December 6-7, 2001
Richmond, VA Sheraton Park South Hotel
804-828-8151 www.soe.vcu.edu/ttac/
**************************************
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