Effective Therapies for Autism and Other Developmental Disorders
Healing Arts Article Written by Lewis Mehl-Madrona, MD, PhD Maintained
and Hosted by The Healing Center On-Line Originally Published In Autism/Asperger's
Digest Magazine as: Enhancing Conventional Medicine: Alternative Medicine's Place
in Treating Autism
During my medical training, I learned that autism
and its related disorders were essentially incurable, a finding certainly confirmed
by our dismal experience. Our autism clinic was an exercise in diagnosis and no
treatment; what little we did for children was largely ineffective. While we had
come a long way from Bettelheim's refrigerator mother theory of autism (in which
a cold, unresponsive mother was the cause of the condition), we were stuck in a
genetic-biochemical hypothesis allowing no possibility for cure or improvement.
We were confident that the unknown genetic defect was buried deep in the biochemistry
of the brain. We were excused from searching for treatments, thereby leaving this
crucial journey to the parents.
The parents of autistic children convinced me that everything I learned was wrong,
to everyone's benefit. Freed from the fetters of
training and pessimistic professors, I discovered that children with developmental
disorders are interesting, and have rich social and communicative lives, though
different from their so-called normal counterparts. Attentive parents naturally
learn this secret language of their autistic children without even realizing this
amazing feat. Autistic children do communicate and do respond, but as if they live
in a parallel universe, which can nevertheless be accessed by those who want to
reach them.
They respond to many treatments, including just receiving attention
and being cared for. They respond to nutritional therapies and body therapies, such
as reiki or craniosacral therapy. They respond to acupuncture. They respond to biofeedback
and to behavioral educational therapies. What don't they respond to? Can autistic
children become indistinguishable from so-called "normal" children? I have seen
it happen sufficiently often to believe, though - in every case - the parents invested
significant time and money to their child's treatment: far above what school systems
and insurance carriers would have paid.To what can we attribute these successes?
No one treatment seems to outperform all the others and no clear signposts exist
to tell parents what to do. Despite this, there are therapies with which I begin.
Nutritional therapies are first on my list. The
gluten-casein free diet has helped many children and is where I begin. The diet
can be difficult. Gluten, a major constituent of wheat, and several other grains,
is hard to eliminate. Gluten can be found in soy sauce, for example, in the form
of whey. Gluten can be found in the coatings of pills used for medicine. Eliminating
dairy is almost as hard. Nevertheless, excellent cookbooks exist and are found in
the Autism Books: Diet and Nutrition section of our web site. The theory behind
gluten-casein free diet is based on the opioid hypothesis of autism. In this hypothesis,
defective intestinal enzymes (especially dipeptidyl-dipeptidase IV) allow large
molecules to "leak" through the gut. Gluten, and the structurally related casein
from dairy, are incompletely digested and pass through the gut as molecules with
opioid-like properties. In larger doses, these molecules cause hallucinations.
The effect of opioid-like compounds are, in part, the symptoms seen in autism, Asperger's,
and other developmental disorders. While the diet is difficult to follow, one month
is usually sufficient to determine if following the diet will help. After one month,
if any question exists, challenging the child with a grilled cheese sandwich on
whole wheat bread helps to determine if symptoms will worsen after exposure to gluten
or casein. Sensitive children become clearly worse after this meal. At least half
of my patients improve significantly after starting the gluten/casein free diet.
Second on my list of interventions, after "GF/CF diet" or variants of it, is vitamin
supplementation.
Enthusiasm over particular
vitamins appears in waves. Recent candidates include individual B-vitamins (B6,
B12, and thiamin), vitamin A, and essential fatty acids. Dr. Patricia Kane has promoted
awareness of fatty acid metabolism among autistic spectrum children. Through BodyBio,
she offers analysis of fatty acids on the red blood cell membrane to determine their
relative levels. Fatty acid metabolism can be directed toward a pro-inflammatory
state or an anti-inflammatory state, the former being worse for autistic children.
Supplementation with specific fatty acids (especially omega-3 and omega-6) can alter
pro-inflammatory tendencies toward anti-inflammatory. While the details of fatty
acid therapy can become quite intricate, three oils provide almost all of the compounds
needed: evening primrose oil, borage seed oil, and marine lipids.
We can broadly
speak of an inflammatory theory of autism, in which nerve cell membranes are irritated
and nerve transmission is affected. The inflammation can come from a variety of
sources, including viral infections, auto-immune phenomena (in which the body's
immune system attacks its own nervous system), post-vaccine reactions, abnormal
molecules in the nervous system (coming from the leaky gut and deficient enzyme
activity in the gut), and abnormal fatty acid metabolism. The inflammatory theory
can explain the role of some vitamins as anti-oxidants (preventing and reversing
cellular damage from inflammation) and as direct anti-inflammatory agents (vitamin
C, omega fatty acids).
Vitamin supplementation alters metabolism of the nervous
system and provides an abundance of resources for healing within the brain. Getting
children to take vitamins can be difficult, but can be overcome by blending vitamins
into palatable drinks or by mixing the vitamins into foods that the children will
eat. Stevia is a sweetening herb that makes these concoctions more palatable without
causing the adverse side effects sometimes associated with simple sugars. My basic
supplement program includes vitamin C, trace minerals (vanadium, germanium, selenium,
tungsten, tin, etc.), common minerals (zinc, manganese, magnesium, and calcium),
B vitamins (with extra thiamin, B6, and B12), vitamin A, evening primrose oil, marine
lipids, OPC-3's, and vitamin E. Recent enthusiasm has centered around vitamin A
followed by doses of urecholine. I have not yet tried the urecholine, but suspect
that urecholine may not be the essential element of the treatment.
A major problem in autism treatment is separating
what could be called the "Pygmalion Effect" from true biological efficacy. The problem
is complicated by the possibility that true biological activity without an emotional
and environmental context for a treatment doesn't really exist. The Pygmalion Effect
is named after George Bernard Shaw's play in which a lower class, "uncultured" woman
from the slums of London is trained to be a "lady," and becomes every bit as sophisticated
as one born to this position. The effect has been demonstrated in elementary school
classrooms.
In the classic experiment, children's IQ's were measured and the children
were ranked as higher or lower IQ. Teachers were told the opposite from what was
found. High IQ children were presented to teachers as lower IQ. Low IQ children
were presented to teachers as high IQ. One year later, the teachers' expectations
were much more important in determining children's performance than their actual
IQ. Knowing this, we could never ethically repeat this experiment, for we are so
much more aware of how people's expectations for others determine performance. A
confounding problem in evaluating any therapy for autism, including vitamins, is
this Pygmalion Effect. Because of this, many conventional physicians dismiss the
potential value of alternative therapies in favor of pharmaceutical treatments.
Drugs are always better studied than alternative treatments, because 1): they are
easier to study, 2): more money exists to study drugs because of the potential profitability,
and 3): it is more respectable as a researcher and a physician to study drugs. Until
sophisticated clinical trials are completed, any of the alternative therapies I
will discuss could be explained partially or completely by the Pygmalion Effect.
What is exciting about this is the realization that expectations can alter behavior.
If parents expect strongly that their autistic child will improve, the child does.
I am not afraid to try safe therapies that may only work because they activate this
Pygmalion Effect.
This type of healing is just as real as that produced by drugs,
and probably much safer! While we struggle to find biologically active treatments
for autism, we cannot err too greatly by supporting parents' enthusiasm for safe,
new treatments. We know from research on the placebo effect that an enthusiastic
doctor whose patients believe in him or her has a 70% success rate regardless of
the effectiveness of the treatment. An unenthusiastic doctor has only a 30% success
rate with an ineffective treatment. Therefore, we should never discount enthusiasm.
I continue to believe that vitamins are an important part of treating autism, the
above considerations aside. Nevertheless, the Pygmalion Effect may be very important
in another popular therapy - that of secretin.
Secretin is a 27 peptide hormone, produced in the intestines, and commercially marketed as
an aid to endoscopy. The interest in secretin began in 1996, when Dr. Karoly S.
Horvath, director of the pediatric gastrointestinal and nutrition laboratory at
the University of Maryland, Baltimore, administered intravenous secretin while examining
an autistic child with chronic diarrhea.
Several weeks later, the child's mother,
Victoria Beck, called with surprising news: her 3-year-old son, Parker, had started
to talk and had good eye contact. Subsequent infusions, obtained by the parents
- against medical advice - led to further gains.
Dramatic improvement has been reported
for some autistic children who receive secretin. Typically a dose of 2-3.5 International
Units per kilogram of body weight is administered intravenously every 3-7 weeks,
depending upon the child's response and when the effects of the secretin appear
to wear off. Victoria Beck switched to transdermal administration for her child
in which the secretin is applied daily to the skin and soaks into the body through
a vehicle such as DMSO.
Typically a dose of 3 to 7.5 International Units is used
each day. Dr. Horvath and associates gave secretin while assessing gastrointestinal
complaints in two other autistic children, and reported "a dramatic improvement
in their behavior, manifested by improved eye contact, alertness, and expansion
of expressive language," in the next several weeks along with relief of gastrointestinal
symptoms.
In December 1999, Dr. Bernard Rimland of the Autism Research Institute
in San Diego, California, reported that one-half of 100 treated children improved
in behavior, sleep, and/or digestive symptoms - based on questionnaires returned
by self-selected parents. In another series, 70% of 200 children responded positively,
according to the treating physician, with a dramatic effect among 10%. These reports
did not control for concurrent treatment, nor was diagnosis rigorously established.
The results of a randomized, controlled trial of one dose of secretin was reported
in the New England Journal of Medicine's December, 1999, issue by Dr. Sandlin and
colleagues. Children were randomized to receive either secretin in an appropriate
dose or placebo. Change was measured on the Autism Behavior Checklist. Both placebo
and treatment group improved equally over the course of one month.
Opponents of
secretin have used this study to argue that secretin is ineffective in autism. Secretin
proponents have argued that the study was of insufficient length to draw serious
conclusions and that important variables that change in response to secretin were
not measured.
The Autism Behavior Checklist, for example, changes more slowly than
one month. We administer it every six months. This study showed no adverse reactions
to secretin, which was suspicious to me, since I see about 15% of children reacting
to secretin infusion with increased hyperactivity or aggression. Reducing the dose
or giving the secretin at longer intervals usually corrects this.
I have presented
a case series of secretin infusions lasting over one year among 35 patients. About
70% of patients improved - some quite dramatically - again, a figure within the
range of what could be expected with enthusiastic placebo. What is more remarkable
to me is how much some of these children improved. If secretin is working only because
of a change in parental expectations, we have good news. Such a finding could open
a new awareness for the need to expect more from autistic children. If secretin
is not biologically active, then what do parents do who believe in secretin to foster
such dramatic improvements in their child? Knowing this and being able to train
parents in how to influence the course of autism would be as significant as finding
an active biological agent.
Unfortunately, the developmental disorders community
tends to overlook behavioral therapies, much as most illness communities. We modern
21st century people are still searching for pills that will change everything. While
autism may respond in this way, it is as likely that it is a complex illness that
requires multiple, synergistic treatments, not all of which are biological.
Secretin
may open the pathway for searching for other neurohormonal therapies that activate
brain receptors. We know that secretin receptors are found in the brain, especially
in the temporal lobe speech areas. Brain-imaging studies in one of Horvath's original
cases showed a "marked" post-infusion increase in cerebral blood flow to these areas.
Secretin may also activate receptors for a related hormone, vasoactive intestinal
polypeptide or VIP, which is more widely distributed in the brain. Secretin also
stimulates pituitary adenylate cyclase which increases intracellular cyclic adenosine
monophosphate (cAMP), a messenger molecule for brain biochemical reactions. Opioid-like
peptides are known to lower levels of cAMP. Perhaps secretin prevents this or replenishes
the missing cAMP.
Lectins may also be important in explaining the mechanism of action
of secretin. Lectins are molecules that bind to cholecystokinin (CCK) receptors
and other glycosylated (meaning: attached to long-chain sugars) membrane proteins.
CCK is another gut hormone with receptors in the brain. Lectins inhibit CCK-8-induced
alpha-amylase secretion by the pancreas. This inhibition does not occur after administration
of secretin.
There are two divergent opinions on secretin - one that high doses
are necessary to obtain binding of secretin to receptors in the brain; the other,
that only small concentrations are required. The final verdict on secretin is not
yet out.
Returning to the inflammatory theory of autism
brings us to anti-viral therapy. Proponents of a viral infection theory argue that
signs of long-term or chronic viral infection exist among autistic children, and
that treatment with anti-viral agents can improve autism. The most commonly used
agent is Valtrex, though some also have used Zovirax, which is known best for its
use in treating herpes virus infections. Some parents have even reported improvements
in their autistic children from the use of antibiotics. At this time, I know of
no trials that show true biological efficacy of anti-virals for autistic children.
Nevertheless, we can't yet discount this therapy. It may also be that autistic children
have immune defects and are more prone to chronic viral infections. Treatment of
these viral infections could relieve some of the physiological stress of infection
and result in an improvement. Chronic illnesses (including autism) are so much more
complex that most physicians would like to acknowledge. Once a disease process is
started, effects follow upon many other organ systems. Even if viral infection is
not the precipitating insult of autism, it may be important once autism is established,
and treating chronic viral illness may be helpful. If this is so, however, it would
only be helpful for those children who have a chronic virus. There are risks to
anti-viral medications, and there are herbal alternatives. Herbs boost the immune
system instead of attacking the virus directly. Common immune boosting herbs include
echinacea, astragalus, garlic, plant tannins, uva ursi, and berberis. These herbs
can also treat Candida, again by strengthening the immune system.
Immunotherapy
and Intravenous Immunoglobulin
Regarding immunotherapy and intravenous immunoglobulin
(IVIG), we know that autistic children have defects in their immunity, especially
cellular immunity (the kind that involves the direct action of cells - opposed to
humoral immunity which involves immunoglobulin molecules released into the blood
stream). The white blood cells (lymphocytes, macrophages, natural killer cells)
of autistic children can be sluggish and weak. Antibodies to brain proteins (especially
myelin basic protein) are also more prominent among autistic children, suggesting
an auto-immune process, in which the body is attacking itself. Autistic children
show decreased activation of lymphocytes in response to mitogens (substances known
to attract lymphocytes to stream into action). Other immunological abnormalities
found among autistic children include weakened macrophages and natural killer cells,
circulating auto-antibodies to brain proteins, and elevation of agents which activate
immune T-cells (interleukin-2 and soluble CD8), along with increased levels of other
activated cells (DR+) cells. (Plioplys et al., 1994; Warren et al., 1995). Levels
of substances which indicate excess immune activity directed at the self have been
found elevated among autistic children. These include gamma-interferon, alpha-interferon,
interleukin 6 and 12, alpha tumor necrosis factor and others. Immunological studies
of autistic patients have revealed features also found in patients with other autoimmune
diseases.
Autoimmune diseases, including Grave's thyroid disease, rheumatoid arthritis,
and insulin-dependent diabetes, show some genetic predisposition. Similarly, autism
is higher among identical twins than in the normal population. Autism is four to
five times more prevalent in boys than in girls - a gender factor also found in
other immune diseases, including systemic lupus erythematosus, Grave's disease,
and ankylosing spondylitis. Autoimmune disease may be triggered by infections with
bacteria or viruses. In autism, coincidental findings indicate infections with congenital
rubella and cytomegalovirus. Treatment is more difficult. The most popular treatment
is intravenous immunoglobulin G, given in varying protocols. The most aggressive
protocol gives the immunoglobulin approximately every other day, in progressively
increasing dosages, starting at 1 gm/kg, and increasing to 5 gm/kg. The more conservative
protocol begins with 1 gm/kg, increasing to 2-7 gm/kg at monthly doses. An intermediate
intensity protocol is 5 gm/kg, administered monthly. Several studies have shown
benefit to treating children with immunoglobulin, though it is uncertain if all
children would benefit, or only those with chronic viral infections, frequent bacterial
infections, fungal infections, or other immune deficiencies. Dr. Gupta at the University
of California, Irvine, is conducting clinical trials on the use of immunoglobulin
therapy for autistic children, and will have more data soon.
Other immune enhancing
therapies include vitamin C, oligoprocyanthocyanidins (OPC-3), and anti-inflammatory
fatty acids, along with the herbs already discussed. Homeopathy and Homeopathic
Medicines in Treating Autism I have also used homeopathy to treat the symptoms of
autism. Homeopathy is controversial among conventional physicians, but is occasionally
very effective in my experience. Is this effectiveness due to the remedy, to the
placebo effect, or to the Pygmalion Effect? I cannot say, but have especially used
sulfur for hyperactive and aggressive behavior, along with a variety of other remedies
as appropriate to homeopathic theory. Homeopathy has the advantage of having minimal
risk. It either works or it doesn't. When it doesn't work, it doesn't harm. The
debate will continue for some time about whether homeopathy works, though a recent
analysis published in The Lancet, reviewed all of the recent clinical studies of
homeopathy and concluded that it is significantly more effective than placebo. The
downside noted by the review was that homeopathy was not as reliable as some other
treatments. This has also been my clinical experience. When it works, it's wonderful,
but it isn't always predictable whether or not it will work. Homeopathic detoxification
is popular with some parents and physicians. In this approach, small amounts of
toxic substances are used to stimulate the body to heal itself from these substances.
The approach may be combined with dietary modifications to facilitate the release
of toxins. For example, alkaline diets seem helpful for agitated children, at times,
and are thought to aid detoxification. Alkalinizing agents in the diet include spinach,
cucumber, carrot, beet, and celery. These are juiced and used alongside food or
used instead of food in an alkaline fast. Avoiding acidic foods can also be helpful.
These foods include tomatoes, red meats, and simple carbohydrates, to name a few.
Lurking in the background
throughout complementary and alternative medicine lies the question of allergies.
Though some physicians feel allergies are over-stressed, the concept is important.
I typically use the ELISA/ACT Test from Serammune Physicians Laboratories in Virginia,
to test for food allergies. The acronym stands for Enhanced Lymphocyte Immunostimulation
Assay. Blood is drawn and the patient's lymphocytes are incubated with various substances
to determine what cell-mediated reactions the patient is having. Cell-mediated reactions
are more important for food allergies than humoral reactions (immediate antibody
reactions in the blood stream). Some more alternative physicians use applied kinesiology
or an off-shoot called Neuro Emotional Technique, or N.E.T., to test for allergies.
Others place the substances within the patient's "energy field," and test for changes
in Chinese Meridians using pulse diagnosis. Offending substances are identified
and eliminated from the diet or the environment. Nambuprihad Allergy Elimination
Technique (N.A.E.T.) aims to reduce the patient's allergic reaction by balancing
the energy meridians with the offending substances in the patient's energy field.
I have seen these approaches work and not work. We are all impressed when they work.
We are not so impressed, when they are ineffective. I know of no rigorous clinical
studies of the role of allergy treatment in autism, but suspect that some will some
be forthcoming. Certainly eliminating foods and other substances that produce allergic
responses in the autistic child can't be harmful, and may be helpful in other ways,
even if these approaches show no effect on autism in rigorous trials. These approaches
can help the gastrointestinal problems of autistic children, which is no small feat.
Perhaps that will be where their utility will lie.
Therapies
A recent study from the University of Miami showed effectiveness of craniosacral
therapy, a form of osteopathic manipulation, for autistic children. In craniosacral
therapy, the bones of the skull are adjusted along with subtle adjustments of the
spine, all the way to the sacrum. Craniosacral Therapy, or CST, is different from
chiropractic manipulation in that the adjustments are very subtle and are aimed
at improving the flow of cerebrospinal fluid down the spinal canal. This fluid has
been demonstrated to cycle with a pulse of 12 beats per minute. This pulse can be
felt in the area of the sacrum (near the tail bone). The goal of craniosacral therapy
is to improve the ease with which the cerebrospinal fluid circulates and to help
hold the skull bones and the spine in adjustment. The study showed improved concentration,
socialization, and less self-stimulation behavior after a course of craniosacral
therapy. This has been my experience, as well, watching children receive the therapy.
Chiropractic manipulation has been used for autistic children. I know of no formal
clinical studies on its effectiveness, but have referred children for this therapy
and been pleased with the results. Naturally, without clinical studies, the results
could be due to the parents expecting it to work, so we cannot say for sure that
the technique works of its own. Sometimes techniques work by giving opportunities
for natural healers and patients to interact. Unlike drugs, which can be more obviously
separated from the prescriber, body therapies are more fused with the person administering
the treatment. Some body-therapists are more inspired than others. Nevertheless,
a developing literature is finding body therapies very effective for many medical
conditions. We have been doing a pilot study of reiki massage for autistic children.
The preliminary results are encouraging, especially when the parents are taught
to do the reiki along with visualization in between formal appointments with the
therapist. The use of reiki by parents and therapist appears to encourage communication,
especially non-verbal communication. Children are calmer and have less self-stimulation.
Important to remember with healing methods that are non-pharmacological, is that
their effectiveness is a complex mixture of technique, therapist, expectation, and
communication.
Most practitioners in the autism world
have heard of the Lovaas technique of Applied Behavioral Analysis. This approach
is based upon teaching the child skills through interaction in discrete trials in
which the child is rewarded for the correct response. Rewards often include food,
sometimes, unfortunately, foods to which the child may be allergic (M & M candies
are frequently used!). Studies from the Autism Research Center at the School of
Education at the University of California at Santa Barbara, have shown that naturalistic
behavior therapies are better than the applied behavioral analysis at changing autistic
behaviors. This approach incorporates natural situations in which the child is already
interacting and rewards the child through creating opportunities to do more of what
the child already enjoys doing. Non-autistic children may be recruited to be part
of the therapeutic process.
Examples of therapies in the classroom include a teacher
developing a game for the entire class when her autistic student was obsessed with
maps. The game consisted of the children dividing into teams and drawing states
on sidewalks with chalk as fast as possible, including locating the capitol of the
state. The autistic student was excellent at this game and was soon desired as a
team member, thereby improving his opportunities for interaction with other children.
A book has been published about this approach, entitled Teaching Children with Autism.
We are more excited about this method than the applied behavior analysis, though
ABA as it is often called, has helped many children. Other more permission therapies
exist such as those offered by the Options Institute in Western Massachusetts, in
which parents are helped to appreciate the special talents and uniqueness of the
autistic child, and to learn to love the child as he or she actually is. These are
often healing for families, especially when coupled with naturalistic behavior therapy
and the other therapies mentioned here. Conclusions Many options exist within complementary
and alternative medicine for the treatment of autistic children. We have not discussed
drugs that can help autistic children, but rather have focused upon non-drug therapies.
This is not to say that medications cannot be helpful, because they can. But many
parents are interested in alternatives to medications, especially when there are
side effects, and other parents have found that the medications are not helpful
or that alternative therapies can add much benefit beyond what medications can do.
My approach is to present this menu to parents, suggesting that they decide what
makes the most sense to try first. If parents don't know or can't decide, I proceed
in an orderly fashion through nutritional therapies, to body therapies (craniosacral
and reiki, especially), through educational and behavior therapies, and through
Chinese medicine. By the time we have reached Chinese medicine, parents have learned
more about these alternatives, and typically have definite opinions about what will
work. I monitor the outcomes of treatments carefully, asking parents to record daily
counts of desirable behaviors (eye contact, appropriate use of language, etc.) and
undesirable behaviors (self-stimulations, non-responsiveness, aggression). I use
the Achenbach Child Behavior Checklist and the Autism Behavior Inventory on a regular
basis also to document progress. With any therapy, conventional or alternative,
accurate data are needed to prove that the treatment is worth the expense and the
side effects (if there are any). Fortunately, the majority of the alternative therapies
have no side effects.
