See also
Jim Adams journal in this site:
· Literature
Review of Essential Fatty Acids
·
Summary
of Montreal’s 3rd Annual Medical Conference on Autism
·
Summary
of Defeat Autism Now! (DAN!) October 2001 Conference
OVERVIEW OF AUTISM RESEARCH, TESTING, AND TREATMENTS
– one parent’s opinion
By Jim
Adams
jim.adams@asu.edu (comments welcome)
Published in this site by written permission of the
author, Prof. James Adams.
Author’s Note: It should be noted that the
author is a parent of a seven-year old girl with autism, not a medical expert,
so this article should not be construed as medical advice. Any medical treatments discussed in this
article should be discussed with a physician who is knowledgable about
autism. Although the author has tried
to be a well-informed parent, there are many diverse opinions about the best way
to treat autism. I believe that my advice
is consistent with the DAN! Protocol, which is the treatment protocol developed
by a diverse group of some of the best experts on autism at their annual
meeting.
INTRODUCTION
This
article is intended to provide a simple overview of autism, including
information on the incidence, research, testing, treatments, information
resources, and support groups. I hope
that it provides other parents with the hope and advice that they need.
WHAT IS AUTISM?
Autism is
a developmental disability which involves difficulties in language, behavior,
and/or social skills. It is a spectrum
disorder, meaning that it affects different people differently, so that some
may have speech but unusual behaviors, whereas others may have no speech. Less severe cases may be diagnosed with
Pervasive Developmental Disorder (PDD) or with Asperger’s Syndrome (normal
speech, but other behavioral/social problems).
Autism
is a lifelong disability, meaning that if left untreated it will affect people
their entire lives. Left untreated,
many people with autism will not learn to talk, behave normally, or develop
social skills, so that they are unable to live on their own. There is no one cure for autism, but the
good news is that there are a wide variety of treatment options which work to
varying degrees of success for some people, and those will be discussed
below.
INCIDENCE OF AUTISM
The
latest and most accurate statistics on autism come from California, because
they have a centralized reporting system of all diagnoses of autism. Their data shows that the incidence of
autism is rising rapidly, increasing 258% in the last five years, and 36% in
1999 alone. Currently 1 in 258 children
in California is diagnosed with autisim (according to the strict DSM-IV
criteria). Similarly, in Arizona the
Department of Developmental Disabilities served 633 people with autism, and
only 3 years later in 1999 it served 1057 people with autism, a dramatic
increase.
We do
not know why the increase is occurring, but there are several hypotheses. The cause(s) of autism is not known, but
there is increasing evidence that many cases involve fungal and/or bacterial
invasion/attack of the gut, which may limit the ability of the body to extract
the right nutrients from food, and may allow some unwanted substances to enter
the bloodstream. It is suspected that
early use of oral antibiotics and some vaccinations may cause or contribute to
these fungal and bacterial infections.
Another possible cause is the “stealth virus”, which is difficult to
detect. The biological approaches
discussed below may help treat some of these causes, and the therapy approaches
may help improve behavior and communication.
There is
apparently a genetic link to autism; if parents have one child with autism,
there is a substantial chance (around 5-10%) that any other child will have
autism. In fraternal twins, if one twin
has autism, there is a 25% chance that the other twin will. In identical twins, if one twin has autism,
there is a 95% chance that the other will.
SEIZURES
Approximately 25% of people with autism also develop
seizures, especially as they approach adolescence. There have been some claims that a gluten-free, casein-free diet
can reduce seizures, but it is unclear whether or not this is true.
RESEARCH ON AUTISM
Autistic Colitis:
Dr. Andrew Wakefield in England has carried out
endoscopies of over 130 children with autism, age 3-16, who had
gastrointestinal disorders (chronic diarrhea or chronic constipation). In over 95% of them he found damage to their
intestinal lining, usually less severe than ulcerative colitis but spread more
throughout the entire digestive tract.
Tissue samples were examined by Professor John O'Leary
who
found that 24 of 25 of the samples contained the measles virus, from the same
strain as that used in the Measles/Mumps/Rubella (MMR) vaccine. Wakefield also noted that the number of
people with autism was fairly constant in the US until the late 1970’s, when it
began increasing rapidly, and a similar rise occurred in the United Kingdom in
the late 1980’s and in Kuwait in 1992.
These are the times when the MMR vaccine was introduced in those
countries. It is known that the measles
virus weakens the immune system, making people more susceptible to future
infections.
It is known that vaccines can cause
disease, especially when the live virus form is used. For example, in the last twenty years, the only people in the US
to become infected with polio are those who became infected from the vaccine. Therefore, it seems plausible that the MMR
vaccine could, in rare cases, cause a measles infection.
Yeast/Bacterial Infection in the Intestine: Dr. Bill Shaw is a biochemist who has tested
the body fluids (blood and urine) of thousands of people with autism. In his book (see reference section) he
explains that the major difference he finds between people with autism and the
typical population is the elevated level of certain organic acids in their
urine, and those organic acids appear to be due to yeast and/or bacteria in
their digestive system. In fact, he
states that about 80% of the people that he tests are found to have an elevated
level of yeast or bacterial levels (everyone has some level in them),
regardless of their age, so it appears to be a lifelong condition for many
people with autism. He finds that
treatment with antifungal medications can reduce the yeast infection, and
treatment with antibiotics or (preferably) with pro-biotics (good bacteria,
especially the Culturelle strain) can replace the “bad” bacteria (like
clostridium) with “good” bacteria (like lactobacillus acidophilus and rhamnosus
acidophilus gg (Culturelle)). He finds
that reduction of the level of the yeast and/or bacterial infection results in
an improvement of the symptoms of the people with autism. However, unlike the typical population,
people with autism often need to continue treatment for years, as these
infections often return as soon as the treatment is stopped.
Casein/Gluten Peptides: Dr. Karl Reichelt of Norway has studied the
blood of people with autism, and he has found that most of them have many
unusual peptides in their blood. This
work was confirmed by Dr. Cade in Florida.
The most common peptides are casein (from milk products) and gluten
(from wheat, barley, rye, and certain other grains). These peptides are rarely found in typical people. It appears that the peptides reach the blood
because of poor digestion (normally the peptides are broken down into smaller
molecules by the digestive tract) and because of a “leaky gut” which allows the
large undigested food molecules to enter the blood. (Yeast infections are known to cause “leaky gut”, because the
yeast colonies partially digest the intestinal lining). Since the molecular structure of casein and
gluten is very similar to that of heroin, morphine, and other opioids, it is
believed that they attach to opioid receptors in the brain and cause unusual
behaviors, “spaciness”, and language delays.
Only a tiny amount of opioids is sufficient to have a major effect, so
that a total elimination of them may be necessary to eliminate their
effects.
Secretin: Secretin is a hormone that stimulates the pancreas to neutralize
stomach acid, and is normally generated after each meal by a person’s
body. In 1997 Victoria Beck
accidentally discovered that a single dose of secretin (about the amount your
body would produce in one day) resulted in a dramatic improvement in her
child’s intestinal problems (chronic diarrhea) and also dramatically improved
his speech and behavior. By the summer
of 1998 her story became widely known, and by the spring of 1999 it is
estimated that over 3000 people with autism have tried it. Dr. Sidney Baker, who has collected data
from over 1000 people who have tried it, finds that it has a dramatic, major
effect perhaps 10-15% of the time, and is of some benefit about 55-60% of the
time, and of no effect 30% of the time.
He does not find any correlation with any factor, including age (people
up to 50 years old) and gastrointestinal symptoms. He suggests trying it three times before giving up. It most often seems to improve sleep and
normalize stools (eliminate chronic diarrhea and chronic constipation).
Of the over 3000 people who have tried
it, adverse effects are rate, but there have been two cases of seizure
activity, and one of those cases resulted in a grand mal seizure in which the
person stopped breathing and could have died except for the presence of CPR
trained staff who restarted the breathing.
Secretin is available in both a
porcine form (from pigs) which is very similar to human secretin, and a
synthetic form identical to human secretin.
The porcine form is only about 60% pure, so the synthetic form is
possibly safer (no impurities, and much less chance of developing antibodies to
it). The porcine form is currently
available, and the synthetic form should be available in 2000.
Source: Porcine form: Ferring (original distributor), and Sun Chemical Co
(called Gaspretin): fax 011-813-5907-3078, $5/ampule (minimum order 10). The Gaspretin is about 1/20 the cost, and
recent reports suggest it is also effective.
Only a few doctors are currently providing infusions; some homeopathic
doctors are also providing infustions.
Synthetic form: The synthetic form is not yet commercially
available, but is due out around December 1999. Another synthetic version, Secrepan has recently been developed
in Japan.
For a full discussion, see the report
by Victoria Beck, available from the Autism Research Institute, www.autism.com/ari,
(619) 281 7165.
Vitamins/Minerals: Over 18 research studies have been carried
out that demonstrate that supplements of high levels of vitamin B6 with
magnesium have improved the symptoms of people with autism. Dr. Bernard Rimland is the leading advocate
of their use, and he has collected data from thousands of parents on the
benefits of supplementation with a wide range of vitamins and minerals,
including B6, Magnesium, DMG/TMG, calcium, zinc, vitamin A, and vitamin C (see
chart). It is interesting to note that
vitamins have a much better improvement:regression ratio than all the
psychiatric medications (the only medication with a similar record is nystatin,
an antifungal medication).
Natural Vitamin A: Dr. Mary Megson carried out a study of 60
children with autism, and found that 56 of the children had at least one parent
who suffered from nightblindness (likely due to a lack of vitamin A) or thyroid
disorders. She gave the children
supplements of cod liver oil (which contains high levels of natural vitamin
A, as well as omega 3 essential fatty acids), and found an improvement in their
eye contact and behavior. Many children
with autism suffer from “gaze aversion,” where they avoid looking directly at a
person, and she hypothesizes that the gaze aversion is due to a lack of vitamin
A, which makes it easier to see out of the corner of the eye.
It is also interesting to note that
vitamin A plays an important role in fighting viral infections like measles; in
fact, the severity of measles has been shown to correlate with the level of
vitamin A, and supplements of vitamin A have been shown to greatly reduce
deaths due to measles infections.
Toxic Metals: Some metals such as lead and mercury can
cause severe mental problems at low dosages. There are estimates that up to 15%
of the children in the US suffer from some degree of lead poisoning, which is
known to be a major cause of mental and behavior problems. The term “mad as a hatter” is due to the
fact that people once used mercury to make felt hats, which caused many of the
hat makers to become insane. One possible source of mercury is typical dental
fillings, most of which are an amalgam of silver and mercury; it is suspected
that a small amount of mercury could leach from the amalgam into people’s
bodies, but this has not been scientifically validated yet. Another possible source of small amounts of
mercury is childhood vaccines, most of which contain thimerosal to preserve
them; thimerosal is 50% ethylmercury by weight. The amount of mercury a typical child receives by 2 years of age
from vaccines is 237.5 micrograms. For
most people this small amount appears not to be a problem, but it is suspected
that in some people it could be a cause of autism or other problems. (Note: vaccines without thimerosal are
available, but are not commonly used).
Toxic metals can be slowly
excreted from the body in hair, urine, and possibly by pregnant women into
their fetuses. However, the excretion
process is slow, and may not function well in some individuals, so it is
possible that these metals could build up to dangerous levels.
TESTING
Children with autism are routinely tested for a number of
problems, such as FragileX syndrome.
However, once they are diagnosed with autism, most doctors do not order
any further tests. The exception is the
group of doctors who organized five years ago to attend the Defeat Autism Now!
conference, and develop a list of suggested tests that can be used to guide the
treatment of people with autism. (See
the reference section information on how to order the DAN! protocol, which I
highly recommend). Since the DAN!
protocol is written by doctors for doctors, below I give a simple explanation
of some of the standard tests, but I encourage the reader to also read the
entire DAN! protocol.
Most of the tests listed below require a physician’s
signature, and that may be difficult to obtain. If sharing a copy of the DAN! protocol does not interest them in
doing testing, then I recommend finding a doctor who will. Testing will not hurt your child (only your
pocketbook), and may provide some important information on how to help your
child. Note that chiropractors and
doctors of alternative medicine may be more willing to conduct the tests listed
below.
Casein/Gluten Peptide Tests: A blood test can be carried out to determine
the level of casein, gluten, and other peptides in the blood. Dr. Reichelt’s lab is one source for
accurate tests.
Based on
this test, parents can decide whether they should try a gluten-free,
casein-free diet.
Stool Test: A stool test can determine approximate levels of yeast and “bad”
bacteria in the intestine, determine a person’s ability to digest protein, fats
and carbohydrates, and also search for intestinal parasites. The Great Smokies Lab is one place to order
the tests.
Also, it is very useful to perform a
visual stool test yourself, since it is free and you can check every day. You should look for undigested food. Ideally a person would have 3 dark brown
“logs” each day (one per meal).
Based on this test, parents can decide
whether or not to try to improve digestion and/or treat
yeast/bacterial/parasite infections.
X-Ray: A simple abdominal x-ray can reveal if there is a large blockage
of stool in the intestine. There have
been reports that large blockages (up to the size of a large grapefruit) often
occur in the intestine of people with autism, especially those with chronic
constipation or chronic diarrhea (it leaks around the blockage). Simple palpation (touch) by a physician
often misses these blockages because of their location (low behind the pelvic
bone or high behind the ribs)
Organic Acid Test: The organic acid test looks for the wast
products of intestinal yeast and bacteria (their organic acids) in urine. It appears to be more quantitative/accurate
that the stool test in searching for yeast/bacteria. The Great Plains Lab is one place to order these tests. If initial tests reveal a yeast and/or
bacterial infection, then one should consider the treatments listed below. Retesting after 1-3 months is strongly
recommended, to determine if the treatments have been effective.
Based on
this test, parents can decide whether or not to try to treat for yeast or
intestinal infections
Vitamin/Mineral Tests: Blood and hair samples can be used to check
for vitamin and mineral levels, and to check for the presence of toxic heavy
metals like lead and mercury. Some
blood tests are less accurate than others, as for some vitamins/minerals it is
necessary to check the level in the blood cells and not merely the level in the
blood serum. Hair tests are especially controversial, as they can easily be
contaminated by shampoo, pool chemicals, etc.
Also, if toxic metals are trapped in the body, then they may not be
excreted in the hair. So, false
negatives with hair are quite possible.
Many labs can do theses tests.
Based on these tests, parents can decide what
vitamin/supplements are needed, and also determine if detoxification of some
heavy metals is needed. I recommend
reading my extensive 30-page handout on Vitamin/Mineral Supplements for People
with Autism.
Amino Acid Test: This test checks for the level of essential
amino acids, which are the building blocks for all proteins in our body. The Great Plains Lab is one place to order
these tests.
Based on these tests, you can
determine whether or not to give your child supplements of specific amino
acids. It is important to provide amino
acid supplements only after testing or with the advice of a physician, as it is
difficult to otherwise know what they need, and problems can occur if you give
the wrong ones.
Allergy Tests: Many people with autism seem to have food
allergies and environmental allergies.
Both scratch tests and blood tests are available from many labs.
Based on these tests, parents
can decide whether or not to eliminate some foods and other allergens.
Fatty Acid Tests: Fatty acids are important in many functions
of the body. Two major categories,
omega 3 and omega 6, are called essential fatty acids because our bodies cannot
make them; they must come from our diet or from supplements. Fatty acids are important for brain
development (a large part of the brain is made of fatty acids) and they control
the permeability of the membrane of all cells.
It appears that it is important that there is a good ratio of omega 3 to
omega 6 fatty acids, so that the cell membranes are not too rigid or too
permeable. Testing is available from
Great Plains Lab.
Based on these tests, parents
can decide whether or not to supplement their diet with essential fatty acids
such as primrose oil (omega 6) and/or cod liver oil (omega 3).
Toxic Metal Tests: Hair and blood tests are possible ways to
test for excessive levels of toxic metals in the body. However, these tests are not very reliable
for several reasons. First, the
hair could be contaminated by the environment. Second, the hair test only measures what is excreted by the body,
so although a high result would mean that a large amount is probably present in
the body, a low result could mean that metals are present but are not being
excreted. Similarly, blood tests measure
what is being carried by the blood, but do not indicate what may be trapped in
tissues, so again a high test can indicate a problem, but a low test could mean
that the metals are trapped in the tissues and are not being excreted into the
blood.
A more accurate test is
chelation therapy, which is actually the first step of treatment. This involves putting a reactive substance
into a person, preferably in small oral doses over several days. The substance then reacts with the metals to
form a substance that can be more easily excreted in the urine. By measuring the level of metals in the
urine a few hours later, one can determine whether or not high levels of metals
were present. If a high level is
revealed, then more treatments are carried out; thus, the test is actually a
single treatment, followed by more treatments if necessary. Different chelating agents are used for
different metals.
One problem with chelation is
that the chelating agents tend to remove beneficial metals (calcium, magnesium,
iron, etc) as well as toxic metals, so chelation treatments are usually done
for only a few days, with 1-2 weeks between treatments during which people need
to take extra levels of beneficial minerals.
Chelation treatment is still controversial, and the author does not know
of any scientific studies to test its effectiveness for treating autism, but
there are some anecdotal reports by individuals of its usefulness.
TREATMENTS
Gluten-Free, Casein-Free Diet: Some children with autism appear to benefit
from a casein-free, gluten-free diet.
It is hypothesized that fungal and bacterial infections can cause a
“leaky gut,” wherein substances from the digestive tract enter the body which
could not normally. Casein and gluten
molecules cannot normally be absorbed through the intestine (they are too large),
but it appears that they may be able to pass through “leaky guts” into the
bloodstream, where they interact with morphine receptors in the brain, possibly
causing cognitive, communication, and behavior problems.
The treatment is to eliminate all casein
and gluten from the diet, which is very limiting since they are widely
used. Casein comes from dairy products,
including milk, yogurt, and cheese.
Gluten is found in many grains, including wheat, barley, rye, and
possibly oats; rice and corn are two grains that do NOT have gluten. However, there are some reports that corn is
often contaminated with mold.
Results sometimes take 2-3 months, and
in many cases it appears that even very small amounts of food (a bite of a
cookie) can cause problems for several days; a total elimination diet appears
to be needed in many cases.
For a good report on how to implement
a casein-free, gluten-free diet, see the book by Lisa Lewis in the reference
section. Also contact the Autism
Network for Dietary Intervention (ANDI), who publish a quarterly newsletter: AutismNDI@aol.com, PO Box 17711 Rochester,
NY 14617-0711
Vitamins/Minerals: Most people
in the US suffer from one or more vitamin and mineral deficiencies, and people
with autism are especially prone to deficiencies. One reason is that disorders in the digestive tract can reduce
their ability to absorb vitamins/minerals from food. Also, many of the “good” bacteria produce necessary vitamins like
B12, folic acid, and vitamin K, so if they are replaced with “bad” bacteria
then the person has less vitamins. Bernard Rimland, director of the Autism
Research Institute, has been the leading advocate of the beneficial effects of
vitamins on people with autism, especially B6 and Mg. He has collected a large survey of parent’s opinions on the
effect of vitamins and medications (see next page). Overall, the use of vitamins appears to be much more likely to
help than harm, based on parent reports.
If vitamins are beneficial, the effects will usually show up in 1-4
weeks.
Kirkman Labs: Kirkman is a laboratory which specializes in
vitamins and supplements for people with autism. With Dr. Rimland’s help, they developed SuperNuThera, a vitamin
supplement for people with autism, which has been widely used. They have recently developed several new
products. For a full listing of
Kirkman’s supplements for people with autism, along with a detailed description
of each one, see www.kirkmanlabs.com,
or call them at 1-800-245-8282.
BrainChild Nutrionals: Brainchild Nutritionals is run by a
nutritionist who is the father of a child with autism. He has developed 3 levels of multi-vitamin
supplements for people with autism.
Only about 100 people have tried them so far, but the reports from the
company suggest that they help about 70% of the people. They can be contacted at 831 465-0104, or michael@brainchildnutritionals.com
Pfeiffer Labs:
They do extensive testing of people with autism (including
vitamin/mineral testing), and then develop a supplement personally designed for
them. They can be reached at: (630)
505-0300.
For a full report on vitamins/minerals, see my report Vitamins and
Minerals for People with Autism.
Essential Fatty Acids: Humans do not produce “essential fatty
acids”, Omega 3 and Omega 6; they are available from a few foods, especially
fish such as salmon and sardines, and from flax seed oil and primrose oil. They are available from health food
stores. One good source for cod liver
oil is Nordic Naturals, (831) 662-2852.
Digestive Enzymes: It is possible that people with autism have
difficulty digesting some foods, especially gluten and casein. Digestive enzymes may be useful in enhancing
digestion of those foods. SerenAid is
one supplement designed for children with autism to help them digest gluten and
casein, and it is available from Klaire Labs, (800) 533-7255,
www.klaire.com. They have other
digestive enzymes to help with protein and fat digestion. Pfeiffer Labs tends to suggest
Absorbaid. For severe problems, the
prescription medicine Creon is a powerful digestive enzyme
Colostrum: The initial breastmilk from nursing mammals helps infants build
their immune system, and some studies have suggested that breastmilk from
nursing cows is helpful to build the immune system in humans. Colostrum is available from healthfood
stores and from Kirkman Labs.
ANTIFUNGAL/ANTIBACTERIAL
TREATMENTS
Background:
There are at least two strong pieces of evidence that
antifungal/antibacterials treatments are helpful to people with autism. First, as shown on the medication page, over
200 parents individually reported to Bernard Rimland that the antifungal drug
Nystatin helped their children in over 50% of the cases, with rare problems; it
ranks as the most successful autism medication according to Rimland’s
data. Secondly, Dr. Bill Shaw, a
biochemist, investigated the biochemistry of people with autism, and the only
major abnormality he found in people with autism was a high level of waste
products from intestinal yeast and bacteria in their urine. He has since tested thousands of people with
autism, and found that about 80% of them have major yeast and/or bacterial
infections in their intestine.
Furthermore, when those infections are eliminated, the autism symptoms
generally improve, especially for children under 12, but even with some
beneficial effect for people in their thirties. I highly recommend reading his book, “Biological Treatments for
Autism and PDD”, available from the Great Plains Lab (see below).
Treatments: It appears that the best type of antifungal/antibacterial
treatments involves a combination of medications and diet, as discused below.
Medications:
Antifungals: Antifungal medications such as Nystatin are effective in reducing
fungal infections in the intestine.
Nystatin has been used to treat fungal infections since the 1940’s, and
appears to be quite safe since it is not absorbed by the body. However, in normal fungal infections such as
thrush (yeast infection in the mouth and throat), a person only needs a dosage
for a limited amount of time (about 1-2 weeks). In children with autism, many appear to have an innate susceptibility
to fungal infections, so that a lower maintenance dose is necessary to prevent
the fungus from returning. Since
Nystatin has not been tested for possible side-effects for long-term use, there
is some risk, but no side-effects have been noticed in the few cases I know of
where people have taken it for 1-5 years.
Dosage: perhaps 3-5 ml 4x/day; maintenance dose of
perhaps 2-3 mils 4x/day. (Dosages are
not yet well-established). Requires a
doctor’s prescription, which may be difficult to obtain without the tests
described above.
Diflucan: Dr. Shaw has found that Nystatin is adequate in most cases
(perhaps 75%). However, stronger
antifungal medications are needed in other cases. Diflucan is one of the more common ones. Unlike Nystatin, which has near zero
absorption by the body, Diflucan has near 100% absorption by the body.
Safety Note: In rare cases Diflucan can cause liver damage, and that
possibility should be discussed with a physician, and liver testing may be
needed, especially if it is used for an extended period.
Natural Antifungals: There are many natural antifungals,
including garlic and aloe vera juice.
Anti-yeast Diet: Antifungal medications should be accompanied
by a low-sugar diet, since the yeast lives on simple sugars, such as from table
sugar, corn syrup, honey, maple syrup, and fruit/fruit juices. (Think about how yeast ferments grape juice
into wine). Yeasts can also live on
simple carbohydrates, such as in bread.
Eliminating
Yeast Products
Yeast products are found in a wide variety of foods, from ketchup (the
vinegar is fermented) to breads (baker’s yeast) to alcohol (this serves as an
example of the possible strong effects of yeast toxins on people’s
behavior). For children with a yeast
infection, who are exposed to high levels of yeast products, it is probably
good to eliminate foods from their diet that were made by yeast. Some parents have reported very good
improvement when ALL yeast products were eliminated. There are many books on antiyeast diets in general (for example,
The Yeast Connection by William Crook); there is a good chapter by Dr. Bruce
Semon on anti-yeast treatments in Shaw’s book “Biological Treatments for Autism
and PDD.”
Note: Since
anti-fungal agents kill intestinal yeast, but do not affect intestinal
bacteria, it is advisable to combine anti-fungal agents with a “good” bacteria,
such as lactobacillus and bifidus.
Bernard Shaw, a bio-chemist who has investigated the effectiveness of
various brands of lactobacillus, found that Culturelle was the most effective
brand of the ones he tried.
Anti-Bacterial Medications: Oral antibiotics are able to eliminate most
bacterial infections, but they also kill off the good bacteria, allowing yeast
to flourish if untreated. Dr. Shaw has
found that the antibiotic Flagyll has proven useful in eliminating bacterial
infections, but it also kills the good bacteria. He has found that one effective way to eliminate a bacterial
infection is to give doses of good bacteria.
He has found Culturelle to be especially effective.
Psychiatric medications:
There
are many psychiatric medications which treat the symptoms, not the cause, of
autism, such as helping with aggression.
Bernard Rimland has collected data from parents on their level of
efficacy and negative side effects (see
next page). It should be noted that
they generally have a much higher level of negative side effects than vitamins,
but if one doesn’t help there are many others to try.
THERAPY
APPROACHES
Arizona Division of Developmental Disabilities
(DDD): Services may be available for
individuals diagnosed with autism who are residents of Arizona. Typical services for people with autism
include respite, habilitation, speech therapy, and occupational therapy. In addition to being diagnosed with autism
by a licensed psychiatrist or psychologist with training in childhood
development, the applicant must meet three of seven functional limitations:
1)
self-care
2)
receptive and expressive language
3)
learning
4)
mobility
5)
self-direction
6)
capacity for independent living
7) economic
self-sufficiency
In addition to meeting the eligibility criteria for DDD,
families must cooperate with the Arizona Long Term Care System (ALTCS)
eligibility process. Services depend on
eligibility for both systems. To begin
the intake process, call (602) 870-1721.
Arizona Early Intervention Program in Maricopa County: for children under 36 months: 480 941-2199.
Applied Behavior Analysis (ABA): There are a number applied behavior analysis
programs, such as Lovaas and PACE. They
generally begin by having therapists work one-on-one with a child for 20-40
hours/week. The sessions involve
teaching children simple skills in a step-by-step manner, such as teaching
colors one at a time. Positive
reinforcement, from food to hugs and verbal praise, are used to encourage
learning. The sessions usually begin
with formal, structured drills, such as pointing to a color, and then after
several months there is a shift towards generalizing skills to other
environments.
These programs are most effective when started early,
(before age 5), but can be useful for older children, too. They are especially helpful in teaching
non-verbal children how to talk.
For further information, contact:
HOPE: Founded by parents of a child with autism, this
agency specializes in providing trained therapists and consultants for ABA
programs to help children with autism. They also have an excellent handout on
ABA programs, the HOPE Resource Guide. Call Lori Cairns or Jennifer Heisler at
(480) 785-2036.
Lori Schulman:
Consultant who provides advice and ongoing supervision of ABA
programs. (480) 798-9638.
Other ABA providers:
HOPE provides a list of other ABA consultants nationwide in their
excellent booklet, the HOPE Resource Guide.
Typical costs to bring in a consultant is $1500 plus travel costs for an
initial 2-day evaluation.
NACD: The National Association for Child Development (NACD) is a group
which focuses on evaluating each child’s level of development, and then devises
a personalized home program to improve that development. ABA is directed toward skill building, while
NACD utilizes exercises to stimulate the brain to improve overall function. It includes a combination of sensory issues,
language function, fine and gross motor function, sequential and tonal
processing function as well as academic acceleration. Like ABA, this involves an intense one-on-one program with many
drills and activities based on a personal evaluation. For more information, contact their national headquarters at PO
Box 1639, Ogden, UT 84402-1639, (801) 621-8606.
Speech, Occupational, and Music Therapy: These therapies are useful for many
children. However, since they often
only involve 1-2 hours/week, they need to be incorporated with other home and
school programs for maximum benefit.
Fast Forward: This is a computer-based program for
children who have some language (about a typical 3-year old level or higher)
and need help improving it. The session
lasts for 6-8 weeks, 2-3 hours/day. A
recent study of 100 children with autism found that the program resulted in an
average fourteen month gain in communication skills based on a standardized
test (eleven month gain for children with less than 48 month initial
communication level). The national
organization charges about $800. to access the software for the 6-8 weeks
(after which it cannot be used), and the software is only available through
licensed providers who typically charge an additional $1500-$2500. The software can be run in the providers
office, or set up for use in the home by the parents at a slightly reduced
cost. Contact their web site at www.fastforward.com for a list of
providers.
Auditory Training: Auditory training programs attempt to
improve the ability of children to tolerate noise and improve their ability to
distinguish sounds. There are three
auditory training methods, Berard, Tomatis and Samonas. Cost for Berard is about $1200.
PARENT SUPPORT GROUPS IN GREATER
PHOENIX
Email
listserve: HelpASAP: this listserve is for parents of children
with autism in the Phoenix area. It is
a great place to ask questions of other parents. To subscribe, email msofa@mindspring.com
Greater
Phoenix Chapter (GPC) of the Autism Society of America: This group is for parents of children with
autism at all ages, and for individuals with autism. This group meets the 3rd Tuesday of the month at 7 pm
at 6102 N. 16th Street, Suite 10, in Phoenix (North of Bethany Home
Road). Call (602) 940-1093
for information, or see the web site at:
http://aztec.asu.edu/phxautism
Scottsdale
Group: This group is primarily for
parents of young children with autism.
They meet the 4th Tuesday of the month at Coco’s restaurant
in Northern Scottsdale. Contact Linda
Gasten at 596-8943 or Patty Coe at 957-1195.
East
Valley Group: This group is primarily
for parents of young children with autism.
Meets the first Monday of every month.
Contact Janet Kirwan at 480 632-5719.
Southest
Autism Research Center (SARC): Founded
in 1998, this nonprofit center focuses on research into treatment for autism,
and also provides information and seminars on autism. (602) 340-8717
Emily
Anderson Family Learning Center: a lending library for information on
disabilities. Located in the first
floor of the Outpatient Specialty Care Center of Phoenix Children’s Hospital at
909 E. Brill St., SE of 10th St. and McDowell in Phoenix. Call them at (602) 239-6902 for hours.
Tucson
Chapter of the Autism Society of America, (520) 770-1541. This group tends to include older people
with autism.
Tucson Chapter of the
Families for Effective Autism Treatment (FEAT): 520 743-1223. This group tends to include younger children
with autism.
The ARC of Arizona
(Association of Retarded Citizens): (602) 243-1787
Raising Special Kids
(previously known as Pilot Parent Partnership): http://rdz.acor.org/lists/our-kids//
242-4366
Council for Jews with
Special Needs: Contact Becca Hornstein, 971-0825.
Advocates for the
Seriously Mentally Ill: State-funded
advocacy program for adults:
480-941-2199
NATIONAL
SOCIETIES
Autism
Society of America: 1-800-3-AUTISM; www.autism-society.org/ Publishes a newsletter, and offers many
reports on topics related to autism.
Families
for Early Autism Treatment (FEAT): www.feat.org Also provides a large email listserve on
autism-related topics.
Autism
Research Institute: Run by Bernard
Rimland, a parent of an adult with autism and a leading advocate of research on
autism. Publishes a newsletter
summarizing current research on autism, and also provides a wide range of
information. Contact: , www.autism.com/ari, (619) 281 7165.