How to choose a Defeat Autism Now! practitioner for your child and what to do while you are waiting for your first appointment
This piece is meant as a resource for families of autistic children who are faced with controversy and difficult choices when trying to find effective help. However, readers not connected with autism may also find that this article contains interesting pieces of information.
In reality autism is not really that unique or different from many other conditions. It is what happens when vulnerable infants experience an overwhelming exposure to toxins at critical stages of development. Their vulnerability is probably a result of several factors including an immature immune system, genetic predisposition, and nutritional deficiencies, some of which could be inherited. Research has shown that deficiencies of critically important vitamins or other nutrients can build up from one generation to the next, leading each successive generation to be more vulnerable to environmental insults.
Today, there are a growing number of toxin-induced disorders, including chronic fatigue syndrome, fibromyalgia, and a long list of neurological disorders. All of these are at or near epidemic levels and it is important to understand that autism is not unique in this respect and many of the same interventions can benefit all of these seemingly unrelated conditions.
Mainstream medicine is still stubbornly denying that mercury in the preservative thimerosal used in vaccines could have contributed to the autism epidemic. For a long time the official position was a flat denial that such an epidemic even existed. As the numbers continued to grow and became impossible to ignore, the position shifted to holding that the cause is unknown and nothing can be done other than therapy, while millions of dollars are – in my opinion – wasted on genetic research that so far has failed to produce any glimmer of hope.
Parents were the first to demand answers and sound the alarm about their perfectly normal children regressing soon after they received a series of vaccines. This led to the creation of several grassroots organizations dedicated to finding solutions to the autism puzzle. Among these was the Autism Research Institute (ARI), founded by Bernard Rimland, PhD, himself the father of an autistic boy. Dr. Rimland, a psychologist familiar with research, started to compile statistics that showed how autistic children responded to various interventions. Among these vitamin therapy and diet change immediately received the highest ratings, easily outperforming attempted drug interventions.
In time these findings led to the creation of Defeat Autism Now!, a loose association of physicians and scientists dedicated to sharing information on effective treatments for autism, while training other healthcare practitioners and making their findings available to the public. In over ten years of research, Defeat Autism Now! has achieved several breakthroughs in the treatment of autism, but has never received any “official” recognition. Meanwhile, children are improving at ever-increasing rates, and a growing number are recovering to the point that they no longer fit their diagnosis.
At the same time, amidst the official denial, pharmaceutical companies quietly removed thimerosal from most vaccines and new statistics show for the first time ever a decline in the number of new autism diagnoses, further confirming a connection to mercury. However, it is troubling that new diagnoses remain at near-record levels, while a growing number of newly diagnosed children never received a single shot containing mercury.
This strongly suggests that the causes of autism are broader than first theorized and may include the high number of vaccines now given to infants – whether these contain mercury or not – and chemicals in the environment. The number of vaccines recommended for children in the United States between birth and 2 years has grown steadily from a handful to more than 30, with limited if any research on their cumulative and long-term effects on immunity and neurological development. At the same time many new studies show that a growing number of chemicals are being stored in our bodies. Many of these chemicals have been shown to affect brain and nervous system development and could begin to cause trouble as early as during fetal development.
Early autism clusters, such as the one at Brick Township that followed the release of industrial chemicals in the environment, further support the theory that mercury is not the only cause and that other environmental poisons are also implicated. I have written about Brick Township before and you can read the article by searching for the term “Brick Township” in Newsletters.
If you are thinking about trying a Defeat Autism Now! treatment approach for your child, it is important to first spend some time becoming familiar with how the process works, the theories that underlie the treatment, and what will be involved from a practical standpoint. It is certainly not a faith you have to embrace, and I am all for being pragmatic but, if you are uncomfortable with its premises, this approach may simply not be for you. It is important to understand that this is a controversial field and, sooner or later, you will probably face criticism from your childâ’s pediatrician, therapists, family members, and other sources.
A mother recently told me her child’s pediatrician said he could not endorse her choice because there was no scientific basis to link diet and behavior. Then, as she made the first few diet changes I recommended, her son’s meltdowns went from ten every day to two or three. Another mother told me her pediatrician called her at home, after hours, to let her know that taking candy and junk food out of her child’s diet was akin to child abuse.
When faced with challenges like these it counts to know where you stand. Waiting for the initial appointment with a Defeat Autism Now! doctor to ask all the “hard questions” is simply a bad idea because that time should be dedicated to making treatment choices, and turning it into a debate over the merits of the approach will waste everybody’s time and your money.
To help you get started I recommend reading the informative book “Children with Starving Brains” by Jacqueline McCandless. It may be a bit too technical in parts for the average person with no medical training, but it gives you a general sense of what to expect and you can always skim through some of the chapters. On the other hand, there are many parents who will read it in detail and take extensive notes. These can help you talk to your Defeat Autism Now! doctor and make sure that he or she is not overlooking any of the interventions that might help your child.
I also recommend visiting the ARI website http://www.autism.com. This site not only contains volumes of information; it now also offers entire presentations from the organization’s past conferences, which you can download and watch in the comfort of your home.
However, if you can spare the time and expense, nothing may match the experience of attending one of these conference and being able to interact directly with so many professionals and other parents. For some of the parents I see everything finally came together and made sense after they went to a conference.
Oddly enough, children often also start to improve when parents understand what they’re doing and why. A mother whose child is my patient finally confessed she used to think that the DAN! approach was weird until she attended a conference and learned from other parents it could change her child’s life. As I am sure she would confirm, it is difficult to do something wholeheartedly when it seems weird to you! Find out about future conferences at www.defeatautismnow.com.
It is also important at this stage that you formulate your expectations clearly. Too many families start out with unrealistic hopes and give up prematurely when these do not quickly come true. The recent campaign entitled “Autism is Treatable” has attracted a great deal of new attention but may also have lead some people to hope for too much too soon.
In fact, it is a long-term process. For example, some parents give up after just a few months because they are not seeing new speech in their autistic children, while other aspects – for example digestive health, sleep or behavior – all improved. Some families say “we stopped the diet because we saw no positive effects,” but when I query them it becomes clear that there were plenty of positive changes, just not what they had expected.
Given the knowledge and tools we are working with today, with consistency and determination most children will show improvement – in some cases dramatic – but both the timing and degree of improvement are still difficult to predict. I suggest that parents who are thinking of starting this program be prepared to give it at least six months, and then consider any sign of improvement – not just speech – to be a signal to continue. If they go into it with this attitude, there is a very good chance they will be pleasantly surprised. In fact, some of my most successful cases showed very little improvement in the first six months or longer, but then suddenly blossomed.
The next challenge is to choose a doctor you can trust to have the knowledge and skills to help your child. Too many parents pick poorly based on location, cost, or simply because someone’s name appears on the DAN! list, and later have a disappointing experience. Understand that DAN! is a loose grouping of practitioners from diverse backgrounds and the only prerequisite for being listed as a provider is to have been at a conference.
You may find this fact disturbing – so did I at one time – but realize that it is practically impossible for an organization like DAN! to effectively police their referral list. If they restrict it just to MDs they would shut out some of the best practitioners, making it harder for parents to get help. Furthermore, diversity often leads to new ideas and breakthroughs, and this is a field, if ever there was one, that could use a few more breakthroughs! The price to pay for this is that every parent needs to do some careful research before making a choice.
If you look beyond the DAN! lists and include other doctors who do similar work and have gained notoriety in the autism community, you will find all sorts of different and often competing programs and products, each with its army of supporters. Only too often these doctors claim that if you don’t use their patented product or follow their program exactly, doom will ensue and your child will never improve.
To navigate through this jungle while keeping your sanity, I suggest using common sense. If something sounds too good to be true, it probably is. If a doctor promises to cure your child and, by the way, is also selling a patented something, he may be in it for the money. My opinion is that anyone claiming to have a solution should provide hard evidence, not just a few testimonials, which often can’t even be verified.
To choose the right practitioner for your child, follow your intuition and personal preferences. I suggest you put an emphasis on experience, training, reputation, and integrity. Some people prefer large practices run by doctors who achieved national attention. Understand that in this case the trade-off will be lack of individual attention to your child.
If you feel drawn mostly to medications, do not choose to see a nutritionist. On the other hand a properly qualified nutritionist may help you achieve as much or more relying primarily on dietary and other natural interventions. These can be more appealing for some parents but you should also realize that they take a great deal of dedication.
As a nutritionist, I have had the good fortune to enjoy the support of medical doctors who often agree to prescribe medications for children I see based on my requests. This has enabled me to offer the entire range of DAN! interventions when more than diet change and supplements are needed. On the other hand it should be clear that I prefer to rely first and foremost on nutrition and only consider medications when there isn’t an equivalent natural alternative or when these have all been exhausted.
Once you make your choice and – assuming you have chosen to see me – you call my office, you will find out that there is a wait of several months before you can have a first appointment. Unfortunately this is a reflection on the enormous crisis we are facing and the general lack of practitioners willing to dedicate themselves to this field. This wait can be depressing for some parents, but I strongly urge you to see it as an opportunity, not wasted time!
The most significant task you can accomplish during this time is to start implementing changes in your child’s diet. This is a challenge, but one that is likely to pay off with dividends, and parents who do this often spend a great deal of the first appointment going over all the improvements they have seen in their children since making these changes.
As I see it, diet change is a necessary step. Its goal is not to just eliminate a few foods and see if this helps your child, but to implement a brain-healing diet that will play a role in everything else we do later on, whether it produces immediate benefits or not.
Even though no one is claiming that poor diet caused your child’s autism, how can a diet made up primarily of junk and processed food help fix his or her nutritional status? In my opinion, diet is critical even for those wanting to focus primarily on detoxification, because successful detoxification is a process of taking bad things out of the body while at the same time putting good ones in, and a healthy diet is the best way to achieve this.
Diet change will be without a doubt your most difficult task, and it is important that you undertake it at your own pace considering the unique challenges you and your family face. Start out by discussing it as a family and spend as much time as needed planning a strategy. Siblings also present a special challenge that families can address in different ways. I often recommend that all family members share the same diet inside the house, while other children can be allowed to break it when they’re out.
Make the changes gradually if you prefer, but for some parents it is easier to move rapidly and this is a good way to do it as well. However, once you make changes do not waver and, for example, reintroduce junk foods because you feel bad about depriving your child or because you don’t see an immediate benefit. Remember that these foods have no redeeming qualities and will not help your child in any way. In fact, they are harmful for all children, not just the ones with autism. If you need more reinforcement on this point read “The Crazy Makers” by Carol Simontacchi. The subtitle of this book couldn’t be more appropriate: “How the Food Industry is Destroying Our Brains and Harming Our Children.”
Janice Welch, who works with me and is a regular contributor to this newsletter, prepared Appendix 1 below, which lays out the basic principles of the diet I recommend. After you start to work with me I might recommend making changes to this diet, depending on your child’s individual circumstances, but in all cases this is a good place to start and your efforts will not be wasted. Janice also wrote a very nice piece entitled “Changing your child’s diet: a mother’s perspective” that follows this article. Be sure to read it carefully!
Appendix 2 contains general information on tests you can do at home and various resources.
Finally, Appendix 3 deals with supplements. I don’t think there is an urgent need for you to start supplements before you see me, as we will have plenty of time to deal with this area together. However, some parents are eager to start and often receive poor advice when calling supplement companies. Many supplements designed specifically for autistic children are actually very skewed and contain megadoses of certain vitamins but not enough of others.
The hope in giving these megadose supplements is to achieve a drug-like effect that could result in new speech or some other dramatic change. In my experience these breakthroughs are rare and, when they do occur, they are usually short-lived. It is safer and far healthier for your child to start with a few high-quality supplements that provide a balanced low-dose mix of essential nutrients. Later on there will be time to try higher doses of individual vitamins if these are needed in individual cases. In Appendix 3 I have listed basic products I recommend that provide a balanced foundation on which we can build when we start working together.
APPENDIX 1 by Janice Welch
Cleaning up the Diet
Steps 1-5 can be handled step-by-step or all at once. As you start buying more natural foods that don’t contain a lot of refined sugars and additives, you will find that often they also do not contain artificial colorings, flavorings, and preservatives.
1. Avoid refined sugar in all forms. Refined sugars have many different names, such as granulated (table) sugar, powdered sugar, brown sugar, corn syrup, high-fructose corn syrup, dextrose, raw sugar, turbinado sugar, and evaporated cane juice syrup. There are varying levels of bad sugar; for instance, organic evaporated cane juice or raw sugar is a much better choice than high-fructose corn syrup which should be strictly avoided. For recipes, try substituting raw honey or Xylitol from birch tree source (not corn source).
2. Avoid additives, including hydrogenated vegetable oil, brominated vegetable oil (BVO), hydrolyzed vegetable protein (HVP), textured vegetable protein (TVP), cyclamate, Olestra (Olean), potassium bromate, propyl gallate, etc.
3. Avoid all artificial colorings. Look for terms like FD&C No. (as in “FD&C No. 3″); U.S. Certified Color Added; Yellow, Blue, Red, or Green # (as in Red #1)
4. Avoid all artificial flavorings. Tipoffs on packaged foods include the terms artificial flavoring added, aspartame, vanillin, MSG or monosodium glutamate, Nutrasweet, Equal, etc.
5. Avoid preservatives, including BHA (butylated hydroxyanisole), BHT (butylated hydroxyoluene), TBHQ (tertiary butylhydroquinone), sorbic acid, nitrites or nitrates (found in preserved meats, except in health food stores), sulfites (found in dried fruit except organic), sodium benzoate, etc.
6. Balance the diet. Every meal or snack should have equal amounts of protein and carbohydrates and also include plenty of healthy fats (organic coconut oil, extra-virgin olive oil, ghee, avocados, almonds, etc.). An example of a balanced meal would be a Â½ inch thick meat burger that fits in your palm (protein), one slice of rice bread or half a gluten-free hamburger bun (carbohydrate), avocado slices (fat), and raw or steamed vegetables (except for starchy vegetables like potatoes or yams) to round out the meal. Potatoes are a carbohydrate, so to use them in a meal following these guidelines, serve a small baked potato the size of a computer mouse (carbohydrate), topped with ghee or olive oil (fat), a roasted chicken thigh and drumstick from a medium-sized chicken (protein), and steamed or raw vegetables. Keep in mind that fresh fruits, although very healthy, are also carbohydrates in a meal; pair them with protein and not starchy foods.
7. Eliminate gluten, casein, and soy. These also can be tackled one at a time, eliminating foods gradually, but some find it easier to get rid of everything at once and fight the “I want my favorite food” battle with their child just one time. Either way is fine, as long as you arrive at the same goal.
Notes on gluten
Gluten is a protein contained in the grains of wheat, barley, rye, oats, spelt, and kamut. It is a unique protein based on its structure that lends a doughy/elastic consistency to flours derived from these grains. This is why, over the centuries, gluten-containing grains have come to be used so extensively in breads and other baked goods.
While we expect to find gluten in places like breads, pastas, cookies and other obvious grain products, gluten is also “hidden” in many processed foods such as frozen French fries, soy sauce and some rice cereals. It is a common additive in packaged convenience foods, gravies, and many canned products. It is also found in pharmaceutical preparations, particularly vitamin and mineral supplements sold in retail stores.
The following website can be helpful in avoiding glutinous products: http://www.csaceliacs.org/gluten_grains.php
Notes on casein
Casein is the protein found in milk and milk products. It is also used in other products such as soy and rice cheeses, hot dogs, condiments, etc. If you child likes liquid milk, it can be replaced with rice milk, nut milk, and/or organic coconut milk (or a combination, like half rice milk and half coconut milk).
Other ingredients to avoid besides the obvious milk and milk products are sodium caseinate, whey, curds, lactose (sodium lactylate, frequently), lactalbumin, galactose, protein (the added protein in foods, particularly “high energy” foods, is often milk protein), and “natural ingredients” (these may contain dairy products or byproducts; call the manufacturer for further information)
Notes on soy
Soy is hidden in the ingredients of almost all packaged snacks, meals, and condiments.
Soy lecithin and soy oil are usually not problematic. Excluding those, avoid all ingredients with the word “soy” in the description. Also avoid textured vegetable protein (TVP), miso, hydrolyzed vegetable protein (HVP), teriyaki sauce, tamari, tempeh, and tofu.
Whole Foods Market and similar stores are a good resource for gluten-free products and milk substitutes. Shopping at a natural food grocery store helps because oftentimes they will list if a product is dairy, soy, or gluten-free; at the very least they make it much easier to read ingredient lists since they are not full of chemical additives.
A good Internet resource for gluten-free products and milk substitutes is www.wellnessgrocer.com. Just click on the gluten-free section and you will find many quality items. Under gluten-free in the beverage section, you can find almond milk, rice milk, and organic coconut milk. Another Internet resource for gluten-free products is www.glutenfreemall.com.
Another source for organic coconut milk is www.edwardandsons.com; they carry Organic Native Forest Coconut Milk.
A good source for almond flour is www.almondsonline.com.
Here are two simple tests every parent can do at home. These are not only very inexpensive, they can also give us important information about a child’s nutritional and digestive status:
Test 1: Buy a pH paper called pHydrion from a health food store or order it from www.doctorvolpe.com. Record your child’s saliva and – if you can – urine pH when he or she first wakes up in the morning and again approximately one hour after breakfast. Urine pH can only be taken directly from the urine stream or by having your child urinate in a cup. Don’t bother if neither of these is possible.
Record the pH readings three days in a row. If you are in the process of making changes in your child’s diet repeat, this often as you make dietary changes to monitor the levels. Keep the readings in a small notebook along with your other observations about reactions to dietary changes.
Test 2: Hide a small amount of raw but washed corn kernels, between a teaspoon and a tablespoon, in your child’s food or drink so they are not too noticeable. After your child has eaten them record how long it takes the kernels to be excreted in stool (they will come out just as they go in and will look like little yellow pebbles).
• Use a HEPA or similar air filter in your child’s bedroom. I have been pleased with the Austin company’s Health Mate, available through numerous outlets on the internet that can be found through a Google search for Austin Health Mate. You can always find someone offering free shipping. There are two sizes; the junior is ideal for a bedroom and the standard is good for an apartment or one level of a house. They are more expensive initially, but the filters only need replacement every five years.
• Clean water plays a very important role in promoting health and recovery. The best option in my opinion is a water purification system called AKAI Ionizer Plus. You can read about the system and order it here: http://www.hightechhealth.com/html/ionizer_main.htm. I have also written about the benefits of this water in an article on detoxification in Newsletters. It has a lower surface tension and is therefore more hydrating to the body than other types of water. This system is expensive, and a more affordable water purification system that does not provide the benefits of ionized water but is still an excellent choice can be found here: http://purewaterplace.com/h2o/index.php. I recommend avoiding reverse osmosis and distilled water because when minerals are removed from water other toxins from plastics or the environment can leach into it. Initially, or while you are deciding on a purification system, you may want to select clean bottled water. One of the best available is Fiji artesian water sold at many groceries and health food stores. Read about this water here: http://www.fijiwater.com/.
• Avoid using harsh chemicals in the home, especially pesticides. Hunter Puryear at Quality Environments in Houston (713.778.8080) provides effective, non-toxic pest control.
• Avoid perfumes and other fragrances (including those in detergents and other laundry products). These are made from highly toxic chemicals and I have seen many reports of children improving when fragrances were eliminated from the home.
• Use only pure cotton (preferably untreated) for sheets, nightclothes and underwear and use natural detergents, available from health food stores or through the internet at sites like
www.gaia.com. Use only natural soap, shampoo, toothpaste, etc.
• Avoid using chemical insect repellents, etc.
• Avoid plastic containers for food and drink as much as possible. We know that toxic petroleum solvents leach from plastic bottles, wraps, trays, etc. and some children are particularly sensitive to these residues even in minute amounts.
• Consider giving your child Epsom salt baths at night, letting him or her soak for a while for gentle detoxification. Start them with caution as they are not always tolerated and follow this recipe: dissolve 1/2 cup of Epsom salts, 1/4 cup of baking soda, and a few drops of lavender oil in a tub of warm water. A target frequency may be three times a week, but you can do them every night if you see a benefit.
• As an alternative to Epsom salts, you can use magnesium sulfate cream. Rub a dose on his back at bedtime. Some parents use baths on some occasions and the cream other times. This product is available from a compounding pharmacy (prescription required) or Kirkman Labs.
These are basic supplements I have no trouble recommending for any child OVER THIRTY POUNDS. They can be ordered from www.doctorvolpe.com, however some of them are restricted for sale only to patients. If you have an appointment to see me, you can state this in your order and you will be considered as a patient. All capsules can be opened and the contents mixed in juice or a food with the consistency of applesauce.
• A probiotic containing beneficial bacteria to help intestinal health (Mind Linx by Pharmax or Ther-Biotic Complete by Klaire; for highly sensitive children, or when first starting a probiotic: Ther-Biotic Factor 1 by Klaire. Each of these can be administered at 1 capsule per day with a meal.)
• A source of fatty acids: Cod Liver Oil by Carlson, Ultra Pure Fish Oil RS by Vital Nutrients (lemon flavored), or Finest Pure Fish Oil by Pharmax (orange flavored, some children prefer it to the lemon). Start with 1/2 tsp per day, increase to 1 tsp if easily tolerated in children above 50 lbs.
• A digestive enzyme: Vitalzymes Complete by Klaire, 1 capsule during or after meals (but start with 1/4 capsule and build up; some children may need time to build their tolerance to enzymes
• A quality multi-vitamin-mineral: Child Essence by Integrative Therapeutics, starting with 1 twice a day until your appointment. For children unable to swallow capsules I recommend Vitaspectrum by Klaire, 1 scoop a day mixed in juice.