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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.

SUGGESTED READING:

Facing Autism by Lynn Hamilton, ISBN 1-57856-262-7.  This is one of the first books parents should read.  It tells how one mother helped her child recover from autism, and it gives a good overview of testing, treatments, and resources.

Biological Basis of Autism:  William Shaw.  Available from Great Plains Laboratory (913) 341-8949, www.greatplainslaboratory.com  Covers many biological issues and treatments, including yeast/bacterial infections and casein-free/gluten free diets.

DAN! Protocol:  A suggested series of tests for evaluating children with autism, developed by a group of experts as a result of the Defeat Autism Now! (DAN!) conference.  Available from the Autism Research Institute 4182 Adams Ave., San Diego, CA 92116, www.autism.com/ari/. (619) 281-7165 (phone), (619) 563-6840 (fax)

Let Me Hear Your Voice" by Catherine Maurice   A story of how one mother helped her autistic child with ABA.

Gail Gillingham's "Autism, Handle With Care" deals with the sensory issues often seen in people with autism.

SCHOOL PROGRAMS:

For children younger than 3 years old, there are early intervention programs.  For children over 3, there are pre-school and school programs available.  Contact your local school district.  In some cases a special education program may be best, but for higher-functioning children I think integration into a regular school setting is best, provided that there is enough support (a part or full-time aide, as needed).  Preparing an Individual Education Plan (IEP) and checking that it is being implemented is important to a child’s success in school.

 

Social Security Payments

Families with limited incomes (under about $25,000-$35,000/yr depending on family size and assets) can apply to the Social Security agency for payments to help children with a disability.  For more information, contact your local social security office by calling 1-800-772-1213.

 

SPECIAL NEEDS TRUSTS

Children who have assets over approximately $2000. Are ineligible to receive state and federal services; they must spend their money first.  However, the government does allow “special needs trusts” to be set up for children with disabilities.  These are irrevocable trusts in which a guardian decides how to spend the money on the child.  They are the best way for relatives to leave funds to the child, as they do not count against the child when determining their eligibility for government services. 

For more information, contact a lawyer who specializes in special needs trusts, or contact Bart Stevens, CPA, (602) 404-4239, who runs workshops on how to create these trusts.

 

WHAT TO DO NEXT?

I suggest the following course of action:

1)       Attend one or more parent support groups; parents are a wonderful source of support and information.

2)       Contact DDD and arrange for an evaluation, and contact HOPE or another agency to find therapists and respite providers.

3)       Contact SARC and ask about the Urinary Organic Acid Test, to determine if the child has a yeast and/or bacterial infection.  Depending on the test results, implement the various medical and dietary treatments.  Then consider other tests in the DAN! Protocol.

4)       Try some of the vitamin and dietary supplements for a month, to evaluate if they are helpful.

5)       Continue trying to learn all you can.  Good luck!

Table 1.

Parent ratings of behavioral results of drugs (from Bernard Rimland’s data)

Drug

no. cases

%worse

% no effect

%better

better:worse ratio

 

 

 

 

 

 

Antifungal

208

4

47

49

12.9

Clonidine

118

19

30

51

2.7

Naltrexone

111

19

40

41

2.1

Beta blockers

154

17

49

34

2

Cogentin

47

18

47

35

2

Deanol

169

15

58

27

1.8

Phenergan

48

23

37

40

1.7

Anafranil

102

29

24

47

1.6

Fenfluramine

401

20

51

29

1.5

Tegretol

673

23

43

34

1.5

Lithium

209

24

43

33

1.4

MelIaril

1605

27

38

35

1.3

Buspar

55

27

38

35

1.3

Prolixin

36

33

25

42

1.3

Benadryl

1347

22

52

26

1.2

Depakene

300

27

42

31

1.1

Prozac

206

35

25

40

1.1

Hydroxyzine

247

22

54

24

1.1

Stelazine

348

28

43

29

1

Haldol

804

38

24

38

1

Zarontin

64

30

40

30

1

Tofranil

325

34

34

32

1

Dilantin

841

28

47

25

0.9

Thorazine

763

35

40

25

0.7

Chloral hydrate

90

43

27

30

0.7

Valium

550

34

45

21

0.6

Ritalin

1661

47

27

26

0.5

Cylert

294

46

32

22

0.5

Amphetamine

629

50

30

20

0.4

Phenobarbital

731

48

35

17

0.2

Mysoline

87

53

36

11

0.2

Table 2. Parent ratings of behavioral results of nutrients (from Bernard Rimland’s data)

Nutrients

no. cases

%worse

% no effect

% better

better:worse ratio

calcium

97

1

41

58

56.0

vitamin C

220

3

48

49

18.2

folic acid

226

3

53

44

16.5

vitamin B-6 and magnesium

2050

5

49

46

9.9

zinc

88

6

44

50

8.8

dimethylglycine

1467

7

52

41

5.9

Niacin or niacinamide

49

8

47

45

5.5

 

 

 

Reprinted by permission of the author, Prof. James Adams

 

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