AUTISM

AUTISM, DIET AND VACCINATIONS

I have a nephew who is severely autistic, so this subject hits close to home. I decided to add this section on autism to my website because I have been reading about the possibility that some autistic kids may improve when placed on a gluten-free, casein-free diet.

What Causes Autism?

There are a number of theories on the causes of autism. Current research is exploring the possibility of the combination of genetic risk factors and exposure to environmental triggers. Chemical exposure is being investigated as a possible trigger, along with childhood infections and vaccinations.

Early Clues to Autism

All children develop at different rates, so this information is to be considered a very general guide only; parents with questions should see their pediatrician.

At around 18 months a child with normal hearing and development should show an interest other people. The child should respond when his or her name is called, and when spoken to he should look at you and make eye contact.

The child should display imitation behaviors and "pretend play", for example, imitating your actions if pick up a toy and put it in a box, or pretending to make a toy dog "run".

The child should also share things that catch his or her interest by pointing at them (or bringing them to you), and should follow your gaze to locate things at which you are pointing.

Early diagnosis and intervention are critical in treating autism.

Autism Information

See my Autism webpage for information about how a gluten-free, casein-free diet has helped some autistic kids (the diet has also helped with PDD and ADHD).

My Autism Resources page has information about stores in the Sacramento and San Francisco Bay areas that sell gluten-free foods and flours; books with general information about autism; and cookbooks with gluten-free and casein-free recipes specially formulated for autistic/PDD kids.

Check out my Autism Website Links page for links to websites with information about autism, the gluten/casein-free diet, gluten-free shopping and cooking, and much more.

Autism and Vaccinations

I have also posted my thoughts on the possible connection between autism and vaccinations on the above linked webpage.

IMPORTANT

The autism spectrum disorder information on my website is not intended to be medical advice, or used as diagnostic tools.

Only a health care professional can make an official diagnosis of autism or PDD. Parents or other family members with concerns or questions should see their doctor.

Note: children should not be put on the gluten-free, casein-free diet "cold turkey", rather the diet should be introduced gradually, for a trial period of several months.

Parents considering a dietary intervention should consult their child's doctor and a nutritionist.

Autism, PPD, and Diet

Some autistic children and teens show improvement when placed on a gluten-free, casein-free diet (GF-CF diet). The kids who respond best are the ones who self-limit their diets primarily to dairy foods and/or processed and baked foods made with wheat, barley and rye flours. Some children with pervasive development disorder and attention deficit hyperactivity disorder also respond well to the diet.

Research shows growing evidence of the possible reason; some autistic people may lack an enzyme necessary to properly break down casein proteins (in dairy foods), and gluten proteins (in wheat and other commonly used flours). Instead their bodies break down these proteins into peptides that are chemically similar to opiates. One theory currently under study is that these peptides attach to the opiate receptors in the brain, contributing to the behaviors and learning problems seen in many autistic people.

Since autistic kids lacking the enzyme get opiate-like chemicals from the gluten and casein proteins, they literally become "addicted" to those foods, craving them and refusing to eat anything else. Many parents of autistic children have noted that their child self-limits his diet almost exclusively to foods like bread and crackers, and/or he drinks excessive amounts of milk.

Before going further I would like to emphasize several key points. First, not all autistic children respond to the gluten-free, casein-free diet; there seems to be a subset of autistic kids who respond favorably. Of those who do respond, the range of improvement can vary from mild to dramatic.

Also, time is of the essence; the length of time between the autism diagnosis and starting the diet seems to be a significant factor in the amount of improvement. Having said that, even some autistic teens who are being put on the diet for the first time have shown some mild improvement.

Be aware that if an autistic child is "addicted" to the opiate-like peptides his body makes from the gluten and casein proteins, he will go through withdrawal when first put on a gluten- and casein-free diet. His behavior problems will be worse for a few days and then he will get better, after going through the withdrawal phase.

It is never too late to try the diet, and it is generally a very safe intervention, especially when bolstered with nutritional supplements such as vitamins. If an autistic child is self-limiting to bread and milk, the GF-CF diet will probably be more nutritious than the child's current diet. Parents should work closely with their doctor and a nutritionist when putting their autistic child on any kind of dietary intervention.

One note of caution; some autistic kids have additional food allergies and sensitivities along with the gluten and casein problems, so new foods should be introduced cautiously. Foods to which some people have severe allergies such as peanuts and eggs should only be tested at a doctor's office. Also, soy protein is somewhat similar in structure to milk protein, so watch for sensitivity reactions when adding soy products to the diet.

An excellent book on this subject, written by a mother who helped her son recover from autism by putting him on a gluten-free, casein-free diet is "Unraveling the Mystery of Autism and Pervasive Development Disorder: A Mother's Story of Research and Recovery", by Karyn Seroussi (ISBN 0767907981).

Karyn and her scientist husband did a great deal of research as soon as their son Miles was diagnosed with autism. About four months after the diagnosis they put him on a gluten-free, casein-free diet and he showed dramatic improvement. The diet, plus therapy, helped Miles recover to the point where his learning and behaviors are normal in every way for his age. Miles still has "autism"; he remains on the diet because if he eats anything with gluten or casein the autistic symptoms come back.

See Karen Seroussi's book and the special cookbooks listed at right for comprehensive information about gluten- and casein-free foods and diets.

Another gastro-intestinal problem frequently seen in autistic people is an overgrowth of yeast in the intestines. A small amount of yeast in the gut is normal, and is kept in check by the "good" bacteria in the intestines. Antibiotics given for an infection can destroy the "good" bacteria along with the bad bacteria. If a child has chronic ear infections and is repeatedly given antibiotics, an overgrowth of yeast can occur.

Left untreated, excessive yeast can cause a problem referred to as "leaky gut" because the yeast turns into a fungus that attacks the walls of the intestines. Tiny holes are poked in the intestine wall, and these holes allow particles to pass from the intestines into the bloodstream that normally would not pass through; this may be one mechanism by which the peptides from improperly digested gluten and casein proteins reach the brain.

Intestinal yeast can be controlled through diet, for example eating soy yogurt with active cultures, and also by giving a probiotic supplement such as acidopholus (look for a brand that is specifies it is safe for kids). Another option is a non-systemic (administered orally) medication called nystatin; your pediatrician must write a prescription.

New foods introduced into the diet should be given on a rotated basis to avoid development of new food sensitivities. See Karen Seroussi's book for a good example of diet rotation.

If a child is doing well on the diet and suddenly regresses to previously observed autistic behaviors, do some detective work and find out what he ate that day, perhaps at school or a friend's house.

Karen's son Miles was doing well on the diet and suddenly regressed one day; a couple of days later his teacher sent a note home with Miles saying that he had eaten a piece of cheese and swallowed it before she could get to him. That one little piece of cheese caused several days of autistic behaviors before the peptides were dissipated from Miles' body.

Another important aspect of autism that people need to be aware of is the effect on family members. Parents can find their relationship and marriage strained, and siblings can feel left out as parents spend more time with the autistic child and less time with them. Several books listed below have chapters on these issues, helping individuals and families cope with the sadness, anger, grief, frustration, and stress that can come with raising an autistic child. And the authors show that there can be moments of joy and happiness, too, on the difficult journey with an autistic family member.

As a side note, I have put myself on a gluten-free diet to see if it would help me feel better. I'm a light eater, but for years I have felt some extra "bloating" after most meals, out of proportion to the amount of food eaten. It occured to me that a gluten-free diet might help make me feel less bloated after meals, and it actually does make a difference. So I speak from experience when I say a gluten-free diet doesn't have to be boring, and it really isn't difficult to maintain. There are many gluten-free foods on the market, see the information below. Karyn Seroussi's book and all the cookbooks listed below have comprehensive information about gluten-free foods, and several of the website links go to sites with information and recipes.

Resources

In the Sacramento area I have found gluten-free foods at Raley's, Whole Foods, the Natural Foods Co-op, Elliott's Natural Foods and Trader Joe's.

A gluten-free diet doesn't have to be boring; in addition to gluten-free breads and pastas, you can find many gluten-free packaged mixes for home baking including bread mixes, chocolate cake mixes, lemon cake mixes, chocolate chip cookie mixes, pancake and general baking mixes (for biscuits, etc.). Snacks like corn chips are ok, too, as long as corn is the only grain. Note that some autistic children have additional food sensitivities to ingredients such as soy and corn, so everything new in the diet should be introduced cautiously, in small amounts.

Note: children should not be put on the gluten-free, casein-free diet "cold turkey", rather the diet should be introduced gradually, for a trial period of several months.

Enriched rice, almond, hazelnut, soy, and potato based beverages can replace milk (watch for nut and soy sensitivities). Be sure to read labels carefully - the brand "Rice Dream" rice milk has a small amount of gluten from barley, so use a different brand. Also, "wheat-free" doesn't mean the same thing as "gluten-free"; a wheat-free product can have gluten from other ingredients such as oats or barley.

A highly recommended calcium-enriched milk substitute is a specially processed potato powder called "DariFree". This powder can be mixed with water for a beverage that even picky eaters will drink, or added to gluten-free homemade bread to make it taste very close to "regular" bread (the recipe is in Karyn Seroussi's book). In the Sacramento area, DariFree is available at Sunshine Natural Foods in Fair Oaks, and Elliott's Natural Foods in Folsom; it can also be ordered from the producer, "Vance's Foods" (see the website link below).

Karyn Seroussi's book has a great deal of useful information on going gluten-free, including what foods and ingredients to avoid, how to avoid cross-contamination (gluten- and casein-sensitive autistic kids are EXTREMELY sensitive to even the tiniest amount of the proteins), what kitchen appliances are most helpful (for example, a bread machine with a gluten-free setting) and much more.

The cookbooks by Lisa Lewis, Pamela Compart and Dana Lakke, and Sheri Sanderson are also excellent sources of gluten- and casein-free cooking information. The books include lots of recipes, and the authors also explain why gluten- and casein-free foods are so important for some autistic kids.

Recommended Books

"Unraveling the Mystery of Autism and Pervasive Development Disorder: A Mother's Story of Research and Recovery", by Karyn Seroussi
ISBN 0767907981

"Special Diets for Special Kids: Understanding and Implementing Special Diets to Aid in the Treatment of Autism and Related Developmental Disorders", by Lisa Lewis
ISBN 1885477449

"Special Diets for Special Kids Two", by Lisa Lewis
ISBN 1885477813

"The Kid-Friendly Autism & ADHD Cookbook: The Ultimate Guide to the Gluten-Free, Casein-Free Diet", by Pamela Compart and Dana Laake
ISBN 1592332234

"Incredible Edible Gluten-Free Food for Kids: 150 Family Tested Recipes", by Sheri Sanderson
ISBN 978-1-890627-28-7

"The Autism Source Book: Everything You Need to Know About Diagnosis, Treatment, Coping, and Healing, From a Mother Whose Child Recovered", by Karen Siff Exkorn
ISBN 978-0-06-085975-6

"Facing Autism: Giving Parents Reasons for Hope and Guidance for Help", by Lynn Hamilton
ISBN 1-57856-262-7

"Autism Specturm Disorders: The Complete Guide to Understanding Autism, Asperger's Syndrome, Pervasive Developmental Disorder, and other ASDs", by Chantal Sicile-Kira
ISBN 0-399-53047-9

"Adolescents on the Autism Specturm: A Parents Guide to the Cognitive, Social, Physical and Transition Needs of Teenagers with Autism Spectrum Disorder", by Chantal Sicile-Kira
ISBN 0399532366

"Could It Be Autism? A Parent's Guide to the First Signs and Next Steps", by Nancy D. Wiseman
ISBN 978-0-7679-1973-9

"The Official Autism 101 Manual: Everything You Need to Know About Autism From Experts Who Know and Care", by Karen Simmons (this one is aimed at professionals in health and education working with autistic kids)
ISBN 0972468285

"Crossing Bridges: A Parent's Perspective on Coping After a Child is Diagnosed with Autism/PDD", by Viki Satkiewicz-Gayhardt, Barbara Peerenboom, and Roxanne Campbell (this book is newly published - summer 2007 - by the Autism Society of New Hampshire, I couldn't find an ISBN number online yet)

Reading Labels

The following flours contain gluten:

- Wheat
- Barley
- Rye
- Oats
- Spelt
- Kamut
- Durum
- Triticale
- Semolina
- Pearl barley

The following flours are gluten-free:

- Amaranth
- Arrowroot
- Buckwheat (also called kasha, sarrasin, soba and beechwheat - this is not a true wheat)
- Corn
- Garbanzo
- Potato
- Quinoa
- Rice
- Sago
- Sorghum
- Soya/Soy
- Tapioca

Additonal gluten-free baking ingredients:
"Featherlight" brand baking powder
"Red Star" brand yeast

Website links

When you visit one of the websites below, click on your browser's "back" arrow to return to this page. I have tried to create some basic categories for organizing the sites; however these are very general categories as many of the sites contain a variety of information.

Autism information websites

Autism Society of America

Autism Speaks & Cure Autism Now

Defeat Autism Now

Chantal Sicile-Kira Website (author of two books listed on the Autism Resources page)

Information about "leaky-gut", a health issue with some autistic kids

Celiac sprue disease causes severe gluten sensitivity, and many of the gluten-free food information websites listed below are celiac-related. However, these sites are also very helpful to those following a gluten-free diet for autism and PDD - just be aware that some of the gluten-free recipes for celiac disease include dairy ingredients, so you will need to substitute dairy-free products in those instances.

Gluten- and casein-free diet information

Autism Network for Dietary Intervention (This site is run by Karyn Seroussi and Lisa Lewis)

The GF-CF Diet

General information about gluten-free foods, cooking tips, and gluten-free recipes

Comprehensive information about foods that are safe and foods (and food additives) to avoid on a gluten-free diet

A list of gluten-free foods, including Asian cooking ingredients from a fan of "bento"

The Gluten-Free Certification Organization has a list of companies making certified gluten-free products

Gluten-Free Info, a website that lists manufactuerers of gluten-free foods

A list of vendors of gluten-free foods

Food Descriptions

The Gluten-Free Kitchen, lots of info about gluten-free foods, plus recipes

Recipes and tips for baking gluten-free

Gluten-Free Web Links

Gluten- and casein-free recipes

Gluten-free recipes

More gluten-free recipes

Gluten-free recipes from the Celiac Sprue Assoc.

Gluten-free breakfast stir-fry, potato patties, chicken soup, and glutten-free, dairy-free whipped topping

Gluten-free recipes, from Gluten-Free Utah.org

Gluten free recipes from Recipezaar

Gluten-free recipes from All Recipes

Gluten-free recipes from Gluten-free Recipes.com

Glutenfreeda, an online gluten-free cooking magazine with recipes

Sites that sell gluten-free foods and have gluten-free recipes

Gluten-free recipes, American and International foods

The Gluten-Free Lifestyle, for "foodies" who are cooking gluten-free

Gluten-Free Essentials, gluten-free baking mixes, rice dishes and recipes

Sylvan Border Farms gluten-free baking products and recipes (I have seen their products at Whole Foods)

Kinnikinnick Gluten-free foods and recipes (in the Sacto area, available at Elliott's Natural Foods)

Mona's Gluten-Free baking products and recipes

Authentic Foods, gluten-free baking products and recipes

Gluten-free flour and recipes

Gluten-free foods and baking mixes

Vance's Foods (makers of DariFree)

Bob's Red Mill has a large selection of gluten-free flours, available at Whole Foods, Raley's & Nob Hill (Sacramento and Bay Area), plus other stores, and also on the Bob's Red Mill website

123 Gluten Free Gluten-free baking mixes

Tom Sawyer Gluten-Free Flour

Gluten-Free Gourmet, gluten- and casein-free baking mixes, pastas and snacks

Gluten-Free Creations , gluten-free baked goods and baking mixes

Gluten-Free Cookie Jar , gluten-free baked goods and baking mixes

Deby's Gluten-Free, gluten- and dairy-free breads

Gluten-Free Trading Co., gluten-free foods

Glutino Food Group, gluten-free foods

Gluten Solutions, gluten-free food products

Wellness Grocer, gluten-free foods

Josef's Gluten Free, gluten-free baked goods

Gluten-Free Bakehouse serving the Bay Area (Sacto residents may be able to special order through Whole Foods, check with store)

Gluten-, nut- and egg-free chocolates

The Gluten-Free Mall

Sacramento and Bay Area gluten-free shopping guides

Whole Foods, a list of gluten-free foods available for purchase at Whole Foods stores

Trader Joe's list of gluten-free foods sold at most (not all) of their stores

Bay Area gluten-free blog with recipes, stores and restaurant info

Shopping in the Bay Area for gluten-free foods

Gluten-free vitamins, medications, and personal care items

Gluten-free foods and vitamins

Gluten-free medications

Gluten-Free Savonnerie, gluten-free soaps, shampoos, lotions and other personal care items (that are also fragrance- , casein- , corn- , soy- , and dye-free)

Dining and traveling gluten-free

Information for eating out and traveling gluten-free

Bob & Ruth's Gluten-Free Dining and Travel Club

Gluten-free restaurant guide for purchase

Online search for gluten-free restaurants that participate in the "Gluten-Free Restarurant Awareness Program"

Autism and Vaccinations

I do believe that children should be vaccinated. However, if a baby has a vaccination scheduled at a time when he has some other sort of infection (e.g., an ear infection), or is just recovering from an infection, consider postponing the shot until he has fully recovered. Also parents should try very hard to get the multiple shots (such as DPT and MMR) administered seperately, and several weeks apart.

Many parents of an autistic child are convinced that a childhood vaccination played a role in the onset of the disorder. Of particular concern are the multiple shots, the MMR (measles, mumps, rubella), and the DPT (diptheria, pertussis, tetanus). Based my research and reading, I think there may indeed be a connection.

The scenario seems to go like this: a baby with a genetic risk factor for autism gets more than the usual number of childhood infections, such as ear infections, pinkeye, etc. The assault of numerous infections in addition to the vaccinations is too much for the baby's developing immune system and finally one more infection, or perhaps a vaccination shot, becomes the "straw that breaks the camels back". Then the baby, who appeared to be developing normally, begins to withdraw and the autistic behaviors appear. Risk factors for autism include having a family member with autism, or a parent with food allergies or some other auto-immume disorder such as lupus, fibromyalgia or diabetes.

The measles portion of the MMR is of special concern when given to lactating women. There is evidence that when breastfeeding mothers receive a booster MMR, the measles portion of the vaccine may possibly be passed through breastmilk to the baby. At the time Karyn Serrousi was doing research for her book, this fact was noted in the Physicians Desk Reference, under MMR. Some autistic children have leisons in the colon with active measles infections, which may contribute to their gastro-intestinal problems.

Under the U.S. childhood vaccination schedule, a baby's developing immune system is subjected to a lot of antigens in the first two years of life, and the National Vaccine Information Center is advocating for a reform of the current vaccination policy.

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