New Definition of Autism
Michael J. Goldberg M.D., F.A.A.P.
Avalar Medical Group, Inc.
5620 Wilbur Avenue, Suite 318
Tarzana, Claifornia 91356
Telephone (818) 343-1010
Fax (818) 343-6585
Pediatrics
& Young Adults
ADHD/ADD-Learning Disabilities,
Immune Dysfunction Autism
A
New Definition of Austim
Autism as
classically defined was and is a devastating disorder. It was
a severely incapacitating disability that was relatively rare.
It occurred in approximately 1-2 infants per 10,000 births.
In this severe
form of "Classic Autism" effective speech was absent.
It could include symptoms of repetitive, highly unusual, aggressive
and self-injurious behavior. Those afflicted had extremely abnormal
ways of relating to people, objects, or events. Parents noticed
that something was "not right" generally within the
first three to six months of life. These children did not coo
or smile. They resisted affection and did not interact normally.
In the last
decade, another type of autism has surfaced that is often referred
to as "Autistic Syndrome." Children suffering from this
disorder generally appear normal in the first 15-18 months of
life. They do not present signs or symptoms pediatricians or neurologists
would find atypical. These children create an inconsistency with
previous held beliefs that 70-80% of autistic children are mentally
retarded. They crawl, sit up, walk, and usually hit normal motor
milestones on schedule. Up until the age of onset, they are affectionate
and appear to have above average intelligence.
Children with
this autistic syndrome may begin to develop some speech but then,
without warning, cease to progress, or begin to regress. Suddenly,
these children become withdrawn. They are quiet sometimes and
hyper at other times. Often self-stimulatory behaviors (i.e. arm
flapping, rocking, spinning, or head banging) develop. In time,
some manifest symptoms that are both similar and atypical to children
previously diagnosed as "classically autistic. "
While training
as a pediatrician, I was told if I saw one autistic child in a
lifetime of practice it would be one too many. What I am seeing
today is not the autism I learned about in medical school twenty
years ago. What was once a relatively rare disorder is now twenty
times more likely to occur. Before, "autism" was 1-2
per 10,000 births. Now, current statistics suggest a frequency
of 20 per 10,000 births (rates of 40 per 10,000 or higher have
been suggested).
In the past,
autism was considered a "psychiatric" disorder. We now
know that autism is a medical condition, not a mental disorder.
Perhaps one of the reasons no one has come up with an answer for
autism is the way we have thought of it (or rather did not think
of it in medicine).
Most "MD"
researchers did not look for the answers to autism because they
felt this was a disorder that was untreatable medically. Treatment
for this affliction was primarily left in the hands of psychologists
and a few psychiatrists.
"Autistic
syndrome," though still treated mainly by psychologists and
psychiatrists, is also no longer considered a psychiatric disorder.
It is a biological disorder that requires medical intervention.
Physicians are now just beginning to understand the medical origins
as well as the actual and potential treatments for autism.
Even though
I believe children with classic autism might be helped medically
as our knowledge of the brain's physiology expands, for now it
might be helpful to separate children afflicted with autistic
syndrome from those with classic autism. As children with autistic
syndrome increasingly become categorized as a "medical"
problem, separating them from the many negative connotations and
hopelessness associated with "classic" autism could
be advantageous to promoting research and funding to help these
children. The differences between the two groups may be summarized
as follows:
Classic
Autism
Generally "abnormal" early (i.e. 3 - 6 months of age)
"Classic" Autistic symptoms / presentation
Presumed "static," / unchangeable
Autistic Syndrome
An increasing population of children with "Autistic/ PDD"
behavioral characteristics
Current estimate 20-40 children / 10,000 (incidence may be as
high as 1-5% of Does NOT have "objective" physical signs
of neurologic damage / injury Majority (?? All) are immune mediated,
appropriately looked upon as a medical dysfunction - open to potential
medical therapyGenerally "normal" early (usually until
15 - 18 months of age) Atypical symptoms Asperger's Landau Kleffner's
ADHD / ADD variants
A potentially
progressive disorder (if not treated / corrected) May explain
the origin of many cases of "Landau-Kleffner" syndrome.
Autism
and the Immune System
I have been
in clinical practice for the last twenty years. When my wife developed
an "unknown" chronic illness in 1982, I began to explore
and research neuro-cognitive dysfunction and immune dysfunction
/ dysregulation in an effort to help my wife. Eventually she was
diagnosed with Chronic Fatigue Syndrome, to what is now CFIDS
(Chronic Fatigue Immune Dysfunction Syndrome).
The first
suspicion I had that autism might be immune-related occurred in
1985. I was in the middle of exploring various alternative therapies
in hopes of helping my wife and others afflicted with CFIDS. About
the same time, some autistic children were referred to me for
evaluation. These children had never had any blood work-ups because
no one thought of their "problem" as a medical one.
Much to my surprise, they had similar profiles on amino acid scr
ns as the adults I
was seeing with CFIDS. I couldn't help but wonder "What did
Autism have to do with the immune system?"
The
Causes of Autism
With the relatively
new thinking that autism has medical origins have come several
theories. Some doctors believe autism is a result of a metabolic,
enzyme, or genetic defect. Although a few children may suffer
a built-in genetic or functional defect present since early gestation,
I do not believe this is the case for most children afflicted.
In addition, the old theories do not fit or began to explain the
large increase in the number of children diagnosed with autism
today.
I believe "Autistic Syndrome" probably is a state of
dysfunction induced in the brain by a dysregulated immune system.
It could be possible that this dysfunction may occur in individuals
that have a genetic predisposition. This predisposition is somehow
triggered by various stresses placed on their immune systems.
It's severity varies with the individual and age of onset. The
triggers may be different (or similar) in each child.
If it is looked
at in relation to the causes of blindness, it is easier to understand.
There are many people who are blind but the cause of their blindness
is very different. This is consistent with the idea of an immune
dysfunction / dysregulation. For whatever the reasons (genetic,
environmental, a combination of viruses, etc.), I believe what
is occurring is an immune mediated, abnormal "shut down"
of blood flow in the brain and therefore central nervous system
function. In adolescents and adults, this dysfunction manifests
itself as CFIDS and various other atypical auto-immune disorders.
In older children, it is seen as variants of ADD (Attention Deficit
Disorder) / ADHD (Attention Deficit Hyperactive Disorder). And
in younger children/infants, it appears as autism, autistic syndrome
and PDD (Pervasive Development Disorder).
When these
children are given a NeuroSPECT (a test to measure blood flow
to various parts of the brain) and clinical blood work, this connection
becomes more than reasonable, it is logical. The theory that much
of autism / PDD is probably an immune-mediated auto-immune disorder
is gaining rapid acceptance. It explains the progressive process
of the autistic syndrome that occurs sometime between 15-24 months
of age. The dysfunction / lack of blood flow eventually leads
to injury of nerve cells, which explains the abnormal brain waves,
and the large numbers of autistic children suddenly being labeled
as "Landau-Kleffner."
The multiple
metabolic, physiologic, and immune markers that are abnormal in
these children, "make sense" when you think of the bigger
picture and consider the primary cause of autism as immune dysfunction,
creating multiple cellular / mitochondrial dysfunctions. A distinction
often misunderstood is that dysfunction starts out of the immune
system, not out of casein, gluten or other metabolic sensitivities.
Children with autism have a lot of metabolic abnormalities, but
that is a result of the problems with their immune systems.
If a metabolic
dysfunction were the cause of a disorder, correcting it would
eliminate the disease. If casein or gluten caused autism, eliminating
them from the child's diet would cure them, but that does not
work.
If metabolic
dysfunction is a secondary factor of autism, you rarely, if ever,
are going to have a patient recover, by treating the "secondary"
rather than "primary" problem. Similarly, if it were
true that adults with chronic fatigue have a metabolic defect,
how come most of them were normal and generally high functioning
for years?
In medical
school I was taught to, get to the reason, and to get to what's
underneath it. It's important not to just treat a symptom, or
what appears to be on the "surface," but rather it is
necessary to treat what is causing the problem.
Medical
Treatments
Most of the
children I see have healthy bodies with reactive and volatile
immune systems. The first step, is to check functioning of various
systems in the body. Unless another "medical" problem
is found, the immune system is what is creating the misbalance
/ dysfunction in the brain.
Unfortunately,
new, potentially safe immune modulators (steroids, IVGG, are old
immune modulators, neither generally safe or effective with this
type of immune disorder) are not yet available. Until these immune
modulating drugs are scientifically tested in controlled studies,
the way to help these children must focus on an overall approach
using efforts / steps and medicines available now. By the time
a child is referred to my office, their immune systems have not
been functioning well for a very long time. This dysfunctional
process did not occur overnight and it takes time to "cool"
down / help "normalize" the body and the immune system.
The closer
you can bring the body towards normal, the better the chance that
the body may shut off this reactive and dysfunctional immune system.
It is a difficult and complicated process to make the body heal
itself especially after years of dysfunction. But if you remove
some of the "offenders" that cause the immune system
to fire when it shouldn't, you're making it easier for the body
to normalize.
The
Role of Allergens and Diet
I usually
begin by testing the blood to determine allergies that could possibly
trigger the immune system to react. Often autistic children come
up allergic to a large number of foods, not necessarily because
they are actually allergic, but rather because their immune systems
are so "revved-up," they react to everything.
This reaction
may or may not occur as a traditional allergic reaction of asthma,
a rash or hives. But what does occur is an immune mediated, abnormal
"shut down" of blood flow in the brain that affect the
language and social skills area of the brain and central nervous
system function.
I generally
start to improve the immune system by placing the patient on a
diet free from dairy products, chocolate, and whole wheat. The
reason for this is to help reduce the stress on the immune system.
If dairy, chocolate and whole wheat are taken away, 96 - 98% of
probable "food" allergies are alleviated. However, I
do not believe that you can correct this condition by diet alone.
If this were possible, parents (and physicians) by now, would
have heard of multiple, "unbelievable" successes over
the years. Reputable "institutions" would be conducting
clinical trials to investigate the "successes."
Since nutritional
therapies have not resulted in cures, or even published reports
of significantly improved cognitive function, it is illogical,
in fact potentially detrimental, to put these children on extreme
diets. However, sometimes these children put themselves on extreme
diets by only eating a limited number of foods. I don't think
there are a lot of normal children who would be healthy on some
of the diets these kids put themselves on.
For most of
the children, all that is necessary is to eliminate the "main
offenders" in their diets that will cause the immune system
to react. It is not necessary to eliminate all wheat. Some doctors
and homeopaths recommend the elimination of all gluten and wheat.
I think these children show improvement because when they are
put on a gluten / wheat free diet, they no longer eat whole wheat.
Usually, all that is really needed is to eliminate whole wheat
and other whole grains (due to allergenic potential) from the
diet.
I do not normally
focus on casein beyond eliminating the primary milk products.
Because even though they may, in theory, play a slight role in
the background, if the allergies overall are lowered, it will
decrease the immune system firing off.
It does not
matter if "allowed" processed products are used, as
long as they do not appear to be a "trigger." But, avoiding
the "main" offenders is extremely important. Eliminating
too many products from a child's diet, increases the risk of disturbing
a child's metabolic balance, rather than helping to normalize
it. (Note: Many supplements meant to compensate for the diet extremes,
may in themselves have allergenic components, acting as negatives
triggers to the immune system and the child overall. They may
fail to be properly absorbed or contain dangerous impurities.
Children may be at far greater risk from diet and "supplements"
than any perceived risk from properly used pharmaceuticals.)
The G.I. tract
is loaded with lymphocytes (white blood cells that fight infection
and disease).Those lymphocytes communicate with the brain. What
has always made sense and is "logical" is if the body
is sensitive to milk protein and whole wheat protein, coming into
the G.I. tract it could cause the immune system to fire.
As research
evolved, it was found that milk and dairy can actually cause a
microscopic blood loss in the intestine by a "reactive"
inflammation of the bowel. It is interesting to note that most
of the world's populations get violently ill when given cow's
milk. Apparently, it's not a normal human trait to digest the
cow's milk proteins.
Asian people
have much healthier arteries than we do. One of the major assumptions
for this is that they eat soy protein instead of dairy protein.
Dairy is the number one source of cholesterol. The entire family
can be helped indirectly if milk is eliminated from the meals.
Parents often worry if their child is getting enough calcium.
Soy and rice milk often have calcium and vitamins A and D added.
However, if a child (girl or a boy) is eating a normal diet, they
will get enough calcium.
In the teenage
years, girl's diets should be supplemented, if you're not giving
them a lot of dairy. But usually, this is not necessary in these
first three or four months. As time goes on a calcium supplement
may need to be added. Often I will suggest Tums®. Tums®
are a very safe source of calcium for a child and they taste good.
Inter-related is the fact that many children and adults who are
sensitive to milk but still continue to drink milk products, often
have iron stores that are low. Their Hgb. / Hct. are chronically
on the low side of normal, even if they were not truly "anemic."
This is typically because of a microscopic blood loss occurring
through this "inflamed" mucosa. If dairy and milk were
eliminated from the diet, and then a biopsy of the intestine was
done, the mucosa(the mucous membrane that lines a structure e.g.
mouth and lips) would look normal. If milk and dairy were then
reintroduced, the mucosa would look raw and inflamed. (Therefore,
in approaching the idea of "leaky" gut, helping the
body by removing negatives, is more important than "supplements"
and nutritional "fixes.")
As a pediatrician
it has been fairly routine for me to see a child do well on formula
(even a cow's milk based one) for 12 months, but when the child
is switched to real milk, the child experiences congestion, stuffiness,
upset stomach, and a whole realm of symptoms not seen before.
Whole protein, unprocessed food is much more allergenic and has
a higher incidence of causing the immune system to react.
The truth
is, there is not as bad an allergic reaction out of a processed
product. When a food is processed, the protein structure is changed.
So a child that might go berserk on milk... may not have a reaction
to "processed" cheese. When the protein structure is
changed, the food will not give as large an allergenic reaction.
Products from
the health food stores are not necessarily the best for autistic
children because they are less processed and more pure. They have
a lot of whole wheat and grains. For these kids, the cheapest
white bread (without milk, whole wheat, or whey) is often the
best choice.
To illustrate
how peculiar the immune system is, when parents seen the results
of the food test come back, a routine phone call is, "How
come you did not say 'no eggs'?" You'll almost always see
egg white and egg yolk with very high numbers, and yet I will
usually say "ignore it." The reason being, unless a
child has eczema where yolk or egg are triggering off a skin reaction,
for some reason the immune pathway fired off by eggs doesn't seem
to play a role in what we are talking about in the brain. I rarely
have to worry about taking a child off of eggs, even though you
may have this "huge reaction" on the food "screen."
This illustrates how parents need to become aware of what doctors
have known and "fought" about for years, there is no
"perfect" food test / screen, results must always be
interpreted in their clinical context. Too often, parents are
being "guided" by interpretation of food and metabolic
screens that do not have the capability to do what the parents
wish. Many mistakes are potential being made, that may be "metabolically"
and physiologically hurting these children.
Although processed
food might give a lesser reaction, the importance of avoiding
allergens cannot be stressed enough. In the beginning, it is especially
important to avoid foods that might trigger the immune system.
If the immune system is triggered, the body is affected for a
minimum of a week to ten days (or longer). So it's necessary to
be particularly strict at the start of the treatment, when the
goal is to cool down the immune system.
If it comes
down to choosing a food (cheat) with milk or sugar, choose the
sugar. From the sugar the child may get hyper for a few hours,
but it wears out of their body relatively quickly. From milk protein
or other allergens, the immune system can be affected for up to
two - three weeks. However since sugar feeds yeast, it is a good
practice to minimize sugars in general.
It is also
important to encourage the children to eat more protein. This
will help balance out their own amino acids, which in turn will
help alleviate some of their problems. All these children need
protein. It is also necessary to restrict the starches. Healthy
breakfasts, lunches and dinners should be served.
Sometimes
this process of restoring the immune system to normal can be very
deceptive. The child is doing extremely well, and appears almost
well or "cured" to a parent, when everything suddenly
falls apart.
A child may
appear to be well, but unless the body has shut off this process,
they still have a reactive, volatile immune system in the background.
Even if a child is functioning at a extremely high level, a child
should not be regarded as "cured", unless the immune
system has truly returned to normal.
While a few
rare children will actually outgrow this process, especially if
you have taken steps to help normalize their bodies; realistically,
it will probably take the advent and usage of new drugs that are
immune modulators, to truly shut-off their dysregulated immune
system.
This treatment
needs to be thought of on a continuum. The closer the child gets
to normal, the better the chance that the body may shut off this
process. But unless you've gone that last little step, unless
this process shuts off, it must be assumed that the immune system
is still volatile and potentially reactive.
The only principle
I have continued to find logical over the years, is the idea that
I'm trying to just help a child "normalize" their body
(and brain). Can I help them balance out their body? If I can
change the diet, their own body can help balance itself. There
continues to be no evidence in these children of any pre-existing,
built-in enzyme or metabolic defect. Therefore, by focusing on
the overall intake, encouraging more protein, less starch, a child's
body will help balance out and replace needed amino acids ( the
building blocks of the body) and other nutrients.
With rare
exceptions, I will never say don't do something if you truly see
a child do better and it's safe, but in most cases I have found
that you can get to the right point if you just think of it as
cool down the body's immune system, help "safely" where
medically and nutritionally possible, and extremely important,
avoid offenders or triggers. If a child is doing better and their
allergy test said they were not allergic to apple, but you give
them a drink of apple juice and the child is bouncing off the
walls, it doesn't matter what the test said, that child should
not have apple juice. And this is the way parents have to work
with their own child.
Until new
immune modulators are tested and ready for use with patients,
I regard each step of treatment as an attempt to help "cool-down"
the immune system, and help the body "adjust" itself
in a healthier manner. While the principles are becoming very
consistent, each child (his/her body and brain) must be "individualized."
Candida
or Yeast and Autism
While taking
the risk of opening a medical controversy, this author certainly
believes there is a logical connection between yeast and a dysfunctional
immune system. However, this theory is not yet widely accepted
by the medical community, but over the last few years has become
easier to talk about and "discuss". Candida is a yeast-like
fungus that is present in all our bodies. Presumably, yeast /
Candida is in every normal G.I. tract. That is where the confusion
begins.
Normally,
a healthy immune system keeps the yeast in check. If the immune
system is not working properly, the yeast have a chance to overgrow
and become a problem. Yeast is one of the likely pathogens contributing
to a metabolic imbalance that is a secondary result of a dysfunctional
/ dysregulated immune system. It is NOT the primary reason or
cause for autism.
There is logic
in saying that if an immune system is dysregulated, a secondary
problem potentially due to Candida needs to be treated. Some doctors
hypothesize that autism is caused by a "leaky gut."
With this theory comes the assumptions that withdrawing allergens
and treating a yeast overgrowth, will help the GI tract to return
toward normal. The problem with this thinking is that if yeast
is not the cause of autism or PDD, then treating Candida is not
going to end the autistic or PDD state. I believe it is only one
of the many steps needed to help normalize the body.
Many children
afflicted with autism have had frequent ear infections as young
children and have taken excessive amounts of antibiotics. This
has exasperated the yeast problem in these children. Other possible
contributors to Candida overgrowth are hormonal treatments (i.e.
steroids, BCP pills, ?? secondary exposure), immunosuppresant
drug therapy, exposure to herpes, chicken pox, or other "chronic"
viruses, or exposure to chemicals that might upset the immune
system. There is an increased probability, that a "general"
environmental factor affecting our immune systems (i.e. ozone
layer depletion, "toxic" chemicals, etc.) may be operative,
affecting many children and adults.
Because it
is impossible and not practical to expect anyone to stay on a
totally yeast-free diet, ongoing medication, anti-fungal supplements,
and avoidance of dietary negatives are necessary to control Candida.
Even with the use of anti-fungal drugs, it is still important
to limit sugar when there is a yeast problem, because yeast grows
200 times faster in the presence of sugar.
If a potent
anti-fungal such as Diflucan or Nizoral is used, it can be assumed
that within 1 - 2 months most all of the yeast will die off. I
do not use Nilstat or Nystatin. For most children Nystatin is
ineffective. And yeast, like bacteria with antibiotics, have become
resistant to Nilstat (and other antifungals).
Usually, I
will use Nizoral or Diflucan for about four to six months while
trying to alleviate other stresses on the immune system and "maximize"
a child's function. In 7- 12 days some patients experience "die
off." This is the only time, a "negative" reaction
to a medication can be a good sign.
When the yeast
is being killed one experiences either a "sensitization"
reaction to "products" of the yeast being killed, or
there is release of "formaldehyde" like products or
other potentially toxic derivatives, that can contribute to negative
symptoms in a patient, including bouncing off the walls, miserable,
and irritated. I know it is ironic, because it actually is a good
sign that the child has a yeast problem that can be corrected
with medication.
It is important
that the parents check in during "die-off" so I can
be sure what is occurring is indeed die-off and not a reaction
to the medication. Die-off usually lasts about 7-14 days and after
that time the change in the child can be rather dramatic. If the
die-off does not end in 14 - 17 days, it is generally a reason
to change choice of anti-fungal.
If the treatment
is successful, usually eye-contact improves. The children seem
more tuned in and less "foggy." Parents report that
after the yeast is under control the frequency of inappropriate
noises, teeth grinding, biting, hitting, hyperness, and aggressive
behavior decrease. The children no longer act almost drunk by
being silly and laughing inappropriately.
While on Nizoral
or Diflucan, I have the patient take monthly blood tests to monitor
liver function before any damage might occur. I tend to be on
the cautious side, "officially" testing is recommended
every 2 - 3 months.
I change medication
at six months, though in theory one could go longer. The reason
I stop at six months is because Nizoral has a very mild effect
on the adrenocortical axis. It's part of the internal steroid
mechanism. While this may even be part of how "Nizoral"
helps the body, it also limits how long one should be on Nizoral.
Generally, I will try to switch to Amphotericin B, which has recently
been licensed as an oral liquid in this country, can now be legally
compounded by certain pharmacies in the U.S.
If the antifungal
therapy is stopped completely, and the body's immune system has
not returned to normal, the yeast will return. Ultimately, the
key is the body's own ability to keep in check an organism that
it doesn't want to have there to start with.
Some doctors
mistakenly give medication to control the yeast for only a few
weeks or even a month. Then the treatment is stopped because the
child is doing better. The problem with this kind of therapy is
that if a child is helped for a short time and then the treatment
is withdrawn, the yeast is going to come back, perhaps even as
a stronger, more resistant strain. Whereas if the treatment took
that child to normal, and their immune system became normal, it
would be possible to withdraw all treatment and the child would
remain healthy.
Antivirals
If the blood
work suggests that a herpes related virus or "unidentified"
retro-virus might be in the body, a therapeutic trial of the antiviral
drug Zovirax is given. The only thing (in theory) treated with
Zovirax is a herpes related virus. If a virus is present and it
is gotten under control, it's one of many major steps necessary
to help the body and the immune system.
On a few of
the older children I am now starting to use Valtrex, which is
an improved version of Zovirax. I never recommend something for
a child unless I can say, "It is safe."
When herpes
virus is discussed, we all think of cold sores, vaginal sores,
but may not consider chickenpox, CMV (cytomegalovirus), or Epstein
Barr. These are also herpes viruses. Being in the herpes family,
they have the unique ability to sometimes stay around even after
the overt symptoms are long gone. They hang around the body and
live in the nerves. Perhaps a "new" Herpes related virus
or retro-virus may be playing a role in some of this epiphenomena.
However, at this time we do not have the technology to explore
and understand how all of this works.
Selective
Serotonin Reuptake Inhibitors (SSRI's)
The only medical
agent out there that's routinely available and directly seems
to help the temporal lobe are called the SSRIs, Selective Serotonin
Reuptake Inhibitors. The drugs that come under this category are
Prozac, Paxil and Zoloft. What these drugs do is, for the first
time, work on a specific pathway in the brain. They block the
reuptake of the serotonin released.
If the serotonin
released "stays around longer / more effectively," part
of the brain works better. Prozac may also alter part of the "neuro-immune"
axis, working to increase blood flow and function in the temporal
lobe. This increased blood flow and improved function of the temporal
lobes, helps many behavioral and processing problems in these
"autistic" children. By helping restore and preserve
temporal lobe function, one may be helping maintain a healthier
brain.
Importantly,
this is not an effort to control the children with medicine. A
very small dose, usually 2-4 mg, is used with a four or five year
old. If controlling a child's behavior was the goal, a dose of
10 - 20 mg would be used. Instead all that is needed to help function
in the brain is a very small (but consistent) dose.
The purpose
of using these drugs is an effort to get a child's brain to work
better. In the past, if you talked about an antidepressant you
were thinking Valium, Librium, Phenobarbital, that's how you "calmed"
someone down. That's not what you're doing with Prozac, Paxil
or Zoloft.
Pharmaceutical
companies are trying to design drugs that will help the brain
more physiologically than the agents out there did before. SSRI's
represent the first of new "designer" drugs, with the
capability of acting physiologically within the brain.
These drugs
can help a child medically to function better. They help transmitter
effect and likely increase blood flow to the area of the brain
that was not functioning properly before. And if the brain starts
working, the results with these children can be phenomenal. These
children are usually extremely bright. (Note: While capable of
helping medically, this author believes strongly that one cannot
judge their positive effects, avoiding negatives at low dosages,
without controlling / combining diet and other steps at the same
time.)
Immune
Modulating Agents
There are
agents that have already been tested and developed, and are now
undergoing new usage's testing in adults that will let us adjust
the immune system. Hopefully, they will have the ability to fine
tune the body and put the immune system back on track. These drugs
are already in existence, but are available only through appropriate
research protocols. They could potentially correct all of the
processing problems associated with autism (and possibly other
childhood learning disorders) where "immune-mediated."
The trouble
is, children are the last in line. Even though trials are now
starting for adults, no agency wants to test children. The liability
is too much. It is only after you've proven things extensively
in adults that treatment for a child is even considered. If medicine
follows its usual course of action, trials for children would
be at least another four or five years away.
That is too
long to wait. We must find a way to make this happen sooner. Even
if the agents are identified that will "normalize" function
or stop abnormalities from occurring in autistic children, these
agents must be used before children pass important functional
and developmental steps that might not be regained if these agents
are administered later in life. Funding for this research is of
the utmost importance. We can not lose children to autism, who
have the potential to lead a normal life.
Even in older
children, it appears parts of the brain can be helped significantly.
If cognitive function improves, the "equation" for the
future changes. But, educators, therapists must start thinking
"rehabilitation" rather than just "training."
Often it is extremely slow and difficult to sort out compounding
behavioral issues ( perhaps after so many years of being bright
but frustrated and dysfunctional secondary to the non-working
parts of the brain).
Vitamins
- Nutritional Supplements - Natural Therapies
I do believe
the B Vitamin mechanism is off in children with autism (again,
secondary to mitochondrial / immune dysfunction, not the primary
reason or cause). Perhaps this is the reason that large amounts
of Super Nu Thera have not seemed to cause any measurable damage.
Perhaps a
lot of the Super Nu Thera is not being absorbed, and the small
amount being absorbed may be helping some children. Some neurologists
are worried that if some of these children are absorbing too much
it is not healthy. There needs to be controlled trials to determine
the correct dosage and real safety or dangers of this agent.
I believe
in the product, but I don't believe in blindly giving it to a
child. Any agent (nutritional, natural, medical) must be judged
on effect (good or bad) and long term safety. It dangerous to
push a child's body to any extreme with mega-dosages of supplements.
Common sense does not mean "mega" dosages of anything.
More is not necessarily better.
Since nutritional
factors do not account for the cause of autism, as noted above,
it is illogical, and in fact potentially detrimental, to push
a child's body, to any extreme with mega-dosages of supplements.
Gamma
Globulin
You don't
in general cure someone afflicted with autism or CFIDS with IM
gamma globulin, but it may play a helpful "supportive"
role. Gamma globulin does have its place for various other acute
autoimmune processes. Unfortunately, IV gamma globulin, is not
the same as IM. With IV gamma globulin, a human product of blood
goes directly into the veins, and must be prepared / processed
differently than IM (Intramuscular). There is a danger of passing
hepatitis and / or any number of unidentified retro-viruses with
this type of therapy. Presently we have no reliable screens for
hepatitis C (some screening becoming possible), D, E, F, G. etc.
If there is an allergic reaction in a child with low IgA, the
possibility of either getting very sick or even dying is very
real.
This type
of therapy has the potential to be very dangerous. Recently, in
the Midwest (I believed Minnesota and/or Michigan), there were
12 cases of hepatitis C contracted from a bad batch of IV gamma
globulin. This and other risks are not justifiable with such a
low probability of "success" with this agent.
There are
some people who will get a little better from IV gamma globulin,
because once again a dysfunctional immune system is the culprit
for these children's problems, and this product can help the immune
system. But the trouble is that it is not a sustained gain. Until
newer immune-modulators are available for these children, a combined
plan of improving the immune system, the body, and the brain,
has a much higher probability of success. If you help the immune
system, the body will work to repair itself.
Therapy
Focus - Goals - Issues
Even if we
had that instantaneous answer to normalize the body, a child still
needs to be caught up on what they missed and "re-educated."
In the past, the focus for autistic children has been on trainability,
cooperation, behavior, NOT on improving the cognitive processing.
Hopefully, a shift to the idea of "rehabilitation" is
already in motion, a full review of techniques and goals is urgently
needed.
Sadly, medications
or efforts to "calm" the brain and child down, may further
shut down the areas we want to improve. What is necessary to ask
about every medical treatment or medication is whether it results
in a child who is brighter eyed, processes better, functions quicker?
Are there negatives associated with what has been prescribed?
The hard part
is often discriminating between what is behavioral and what is
medical. If you get a change where a child is more tuned in, processing
better and literally gives the parents, or the teacher / therapist
a "bad" time, that needs to be dealt with behaviorally,
not medically.
What I am
continually seeing in these children is the better their brain
works, the more they act out like a two or three year old kid
that never had the "reins" put on them. If that's in
the context of the brain working better, it's not a negative.
Clinically,
my experience has been to literally watch a young child (below
4 or 5) "pick-up" where their brain development ceased
to function normally. They need to go through the same developmental
steps all children do, but they are doing it at an older age.
They developmentally act like a 2 year old child, but have the
body and skill of a 4 or 5 year old.
An older child,
can be helped significantly if cognitive function improves, but
as noted above, it is a longer rehabilitation process and catch
up effort. Often it is extremely slow and difficult to sort out
the compounding behavioral issues (perhaps this is due so many
years of being bright but frustrated with their inability to communicate).
It has now
become common practice to hear a parent of a four or five year
old tell me that their kid literally is doing things that they
stopped doing at two. In these cases this is not regression. It
as though you literally turn the brain back on where it stopped
at 18 months or two years of age. This is what is expected and
is fine as long as you get them through those stages and you help
them catch up.
As a child
is functioning better and even when they are dysfunctional, they
like any normal child need praise, limits and consistency. The
problem is that parents are dealing with a child with the physical
ability to get into the trouble a five year old child would, but
without the lines and limits parents would have set previously
for a 2 or 3 year old child. (Note: All children go through normal
testing phases, where they need to learn what is okay, what is
not okay, etc.)
There is a
critical time limit for helping these autistic children. If a
child does not develop or use certain tracts in the brain, he
may never do so. If the child has not used these tracts in the
temporal lobe you may never get them to develop "fully."
Usually, the younger the children are when you start to "normalize"
the body and the immune system, the better the prognosis will
be. These kids are young brains, the longer they don't get help,
the worse off they're going to be. However, the discussion of
"deadlines" must be taken in context by our past (and
generally present) inability to adequately measure and evaluate
areas of brain function objectively.
There are
some physicians who will argue that the body is still "fixable"
at eight or nine, but realistically there is a line. It has been
this physicians experience to note children up to 5 or 6 will
often "turn-on" and pick-up where they stopped, generally
about 18 - 24 months old. On the other hand, as children approximately
6 - 10 or 11 improve, it is a slower process, often requiring
more "help" to "learn" the basics, grow-up
developmentally, and then move ahead successfully. All of these
observations reinforce the fact that we can not wait the normal
cycle of 10 to 20 years for medicine to find the answers for these
children. If we're going to maximize the probability of success,
we still must mobilize efforts to focus on "realistic"/
probable medical solutions available within 1 or 2 years, versus
"genetic" therapies, perhaps available in 10 - 15 years.
We must never
underestimate the unknown, and the power of the body when dealing
with these children. An illustrative case is a physician's child
who is now 10 years old. The child came to me literally wild,
I mean the parents were that close to realizing they were going
to have to institutionalize him. Currently, the boy is now up
to a couple of sentences. He is in school and is starting to learn.
Although I can't say to these parents that I have the same top
hope for a patient who is 9 or 10 that I may have for a 4 or 5
year old, that doesn't mean there can't be a lot of improvement.
This child NOW has a good opportunity to develop skills. He certainly
is showing he's bright and can learn.
The
Image of Autism and Its Implications
Unfortunately
since doctors believed autism should be treated by psychologists
and psychiatrists there has been an absence of pediatricians in
this field. It was and still is believed by noted neurologists
that nothing can be done medically to treat these children. Fortunately,
as these children are changing with therapy, respected neurologists
and other pediatric researchers, are beginning to feel it is time
to "take a second look."
Psychologists
and behavioralists, sometimes give parents advice based on the
assumption that a child with autism is a retarded child who "doesn't
know any better". While the advice given is meant to help,
these are often bright children that are not being expected to
conform to or understand rules and limits. Because of these well-meaning
professionals, these children often become a bigger problem behaviorally.
Without proper discipline and expectations by teachers and parents,
any child will be a problem, these children will be a disaster.
A overwhelming
obstacle to changing the image for these children is the failure
of tools available to date to "objectively" evaluate
CNS (Central Nervous System) functioning, in turn perpetuating
the subjective screening tests and procedures currently used.
To this day, good researchers often take a position, if they can't
measure it, it must not be real. Perhaps, it is far more appropriate
to acknowledge there are areas of physiologic and metabolic function
that we have not yet developed the tools or techniques to measure,
but that does not mean they should be discounted clinically /
medically.
As time goes
on it becomes more evident by clinical confirmation and research
that autism is an auto-immune disorder (see previous review article
"Autism and the Immune Connection"). With this knowledge
I have become extremely concerned that some of the previously
used drug, metabolic, and psychological therapies that have had
little or no history successfully treating this type of disorder
in adults, are not likely to be successful in children. In fact,
many may be potentially harmful.
It is one
thing to try a potentially dangerous therapy or one with many
unknown or undesirable side effects on a brain-damaged or retarded
child. It is quite different to experiment or operate on children
with dysfunctional, but potentially healthy, normal brains.
There is work
being done by doctors with medicines and homeopathic therapies,
that I am not sure is safe for children. They are prescribing
extreme diets and mega-doses of supplements. In part these doctors
are correct that metabolic processes in these children are not
working properly. But I believe the evidence is mounting daily
that they are a secondary result of a stressed / dysfunctional
immune system, NOT the cause of autism.
While some
dietary restrictions and nutritional supplements may help to "cool
down" the immune system, more is not necessarily better.
Often these remedies are given because they will "do no harm."
But harm is occurring by the failure to recognize and expedite
potential new therapies with immune modulators that could possibly
help normalize the immune systems of these kids. And harm is occurring
when parents and physicians are using potentially dangerous therapies
and even operating on these children's brains with little probability
of success.
In contrast,
the good news is that children afflicted with autism whose immune
systems have been helped are showing they are bright thinking
individuals that are not what the world expected. Children with
the "label" of Autism / PDD are not retarded. They have
normal or above normal intelligence. They are not throw away kids
that cannot be helped. They are children who are suffering from
auto immune dysfunction that can possibly recover.
But the label
of autism still continues to carry old "negative ideas, negative
implications," and in turn lowers the urgency and priority
to help these children. It is time to change that label, that
image, and the future for these children.
It is this
physician's hope that 1997 is the year of that change. Through
focusing and combining efforts, this can happen; for the children's
sake . . . . it must happen.
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