Pam Ferro, RN is a parent of a child with autism, the co-founder of Hopewell Associates, Inc., the Director of the Children’s Autism Program at Hopewell, a Defeat Autism Now! practitioner, and the President of the Gottschall Autism Center.
Autism is a whole body disorder. It is a complex, multisystem problem that may be caused by a variety of genetic predispositions and environmental injuries. The health and metabolic problems of autism should be addressed in an informed, methodical health model that supports normalizing aberrant physiological processes. The biomedical approach is such a model that consists of treating the underlying medical problems that may theoretically either trigger autism or aggravate the symptoms that define autism. Many children, teenagers, and adults diagnosed with autism have true, underlying medical conditions that include immune dysfunction, nutritional deficiencies, dietary sensitivities, and biochemical abnormalities. Treating the underlying medical problems, and, specifically, the gastrointestinal (GI) illness, plays a pivotal role in improving language, mood, behavior, eye contact, and bowel function.
More than ever, families of teenagers with autism spectrum disorders are asking the question, “Is my child too old for biomedical treatment?” What we are talking about is essential medical care for sick children, and whether a child is 2 or 22 years of age, addressing the underlying medical problems will improve the health of the child and facilitate development.
People with autism often suffer with constipation and/or diarrhea and other painful and debilitating bowel problems. Unfortunately, gastrointestinal problems are still unrecognized and untreated in this population. This may be especially true in older children or nonverbal individuals whose GI pain and malnutrition may express itself as a “behavior problem,” such as poor sleep, tantrums, self injury, obsessions, compulsions, or aggression. Behavior may become more violent and self-directed as the child gets older, but the treating professionals may be more apt to discount this as “acting out behavior” or long-term maladaptive behavior that they feel is part of the psychopathology of autism. More often than not, those sorts of behaviors can usually be traced back to an injured intestine.
Fortunately, we now have well-documented substantiation from gastroenterologists Dr. Timothy Buie, Dr. Harland Winter, Dr. Rafail Kushak1 and Dr. Karoly Horvath2. They have all found inflammation, maldigestion, and malabsorption in children with autism, as well as intestinal brush border enzyme deficiencies, which is probably one of the most important findings that potentially validates dietary intervention. This demonstrates that those impacted by this problem do not have the necessary enzymes available or accessible for proper digestion and absorption of various foods.
In essence, there is an inability to digest certain foods and maintain the integrity of the gastrointestinal system. The inability to properly digest foods has a dramatic and far-reaching negative impact on all bodily processes, and, therefore, on how a person thinks, feels, and functions.
In her revolutionary book Breaking the Vicious Cycle: Intestinal Health Through Diet, author, researcher, and scientist Elaine Gottschall quotes Gee, a 19th century English pediatrician who stated: “What you cannot digest does you harm.” Her work was originally written to address the gastrointestinal maladies of colitis, Crohn’s Disease, and Irritable Bowel Syndrome. Knowledgeable parents recognized the striking similarities between these bowel disorders and the serious bowel problems that many of their children had with diarrhea, constipation, alternating constipation and diarrhea, gas, bloating, exceptionally foul smelling stools, and even the presence of undigested food in bowel movements.
Elaine herself answered the call of the autism community for teaching, information, and help. At age 81, she began traveling to the United States to attend autism conferences and speak with groups of concerned and overwhelmed parents, teaching them the principles of the Specific Carbohydrate Diet (SCD). This was the very diet that 50 years earlier saved Elaine’s own four-year-old daughter from having surgical removal of her colon with a resultant colostomy for severe bleeding and ulcerative colitis. Elaine not only recognized the common digestive and bowel problems of inflammatory bowel disorders and autism, but also recognized some of the same psychiatric-like symptoms common in both. She often told the story of her young daughter crying and screaming at night in bed, not only from burning pain and discomfort, but from what Elaine described as “psychic seizures” in which her daughter would be terrified and experience a feeling of the walls of the room literally closing in on her and potentially killing her.
Elaine dedicated her life to finding the source and cure for her daughter’s colitis and bleeding and found 93-year-old Dr. Sidney Valentine Haas of New York City who taught her the basic framework of the diet that he was using to treat people with severe bowel disorders. The first question he asked her was, “Mrs. Gottschall, what are you feeding this child?” Elaine reports that they discussed food issues, and he briefly told her about the need for people with serious bowel disorders to follow what has evolved into the Specific Carbohydrate Diet. The eating program healed her daughter, ended her bowel problems, ended her psychiatric-like symptoms, and allowed her to lead a normal life.
Much of Elaine’s work translates directly to the inflammatory bowel problems that people with autism experience. In addition, the diet is further customized, in that people with autism initially have difficulty digesting dairy products.
The Specific Carbohydrate Diet’s goals are to heal the gastrointestinal tract and rid the intestines of bacterial pathogens, microbe imbalances, and fungal overgrowth, and, thus, restore health. The foods that are allowed on the SCD are based on their chemical structure, which is critical, due to the issues with lack of appropriate enzyme access or production and the issues with an injured, permeable gut.
Beef, lamb, pork, poultry, eggs, fish and raw nuts are among the proteins allowed on the diet. Fats such as olive oil, ghee, and coconut oil are used in a variety of recipes. In terms of carbohydrates, monosaccharides are freely permitted, as they do not require further disassembly by enzymes, due to their simple, single molecule structure. They are already in their most elementary form and do not need to be split apart for the body to use them. These simple sugars exist in honey and fruit. There is a variety of muffins, cookies, pancakes, and snack foods allowed, all of which are homemade from a nut flour base. The child’s diet should mainly consist of fruits, vegetables, and meats. Peanut butter (no sugar added) and most beans (soaked for 24 hours) are also permitted.
Complex carbohydrates that are not easily digested due to lack of appropriate enzyme activity remain undigested in the intestine, which feeds bacteria and yeast — rather than the body — causing bacterial overgrowth, microbial imbalance, injury to the gut, and a severe burden to the body and brain. The Specific Carbohydrate Diet works by starving out pathogens, restoring normal, beneficial microbial balance, and providing nutrient dense foods.
The implementation of dietary interventions with teenagers with autism may be a bit more challenging than with very young children, and potentially initially more socially isolating; however, it is well worth the effort to ensure its success.
Adrienne is a charming young lady who was beset with severe anxiety, serious academic challenges, and social exuberance that sometimes bordered on intrusive. She suffered severe constipation that was unresponsive to both natural and pharmacologic intervention. She also has a seizure disorder. Despite her social abilities and expressive language skills, Adrienne was unable to learn shapes, colors, letters, and could not be taught to read, despite everyone’s best efforts. She seemed cognitively more than capable of mastering these basics, but could not do so. She often became overwhelmed and frustrated and would cry and tantrum. She sometimes would physically pick at other people, poke them, and touch others excessively. She was frequently on edge and was quite anxious much of the time. After a move, she was unable to sleep in her own bed. She would pace throughout the new house at night, obsessively checking doors and the stove to be sure everything was safe. Initially, she had actually adjusted very well to the move, but after a “honeymoon” period of adaptation, she became fearful and unsettled. She wanted to sleep in her mother’s bed, after not having done that since she was a very young child.
At the age of 17, Adrienne started on the SCD. It took only a short time to see dramatic changes in her general demeanor. She was noticeably more calm and ceased her picking, poking, and excessive touching of others. She was generally more agreeable and had fewer and shorter tantrums. She also started to sleep through the night in her own bed. Her constipation was totally resolved. Her mother describes it as “The Year of Firsts.” Adrienne is now asking questions, starting to pick out her own clothes, and, because she is calm and her thought process is clearer, she is more open and able to learn, and she now understands that written words have meaning. She is mastering concepts that she formerly struggled with.
Adrienne is enthusiastic about her new eating program and happily eats the fruits, vegetables, meats, poultry, eggs, and nuts that are allowed. She attends public high school, and now she is independently participating in social events with her friends and employed at a local child care center.
Adrienne is a typical example of some of the improvements that are commonly observed in teens with autism.
Strategies for Diet Implementation
As anyone who has ever attempted to change their diet knows, this can be very challenging and emotional. Some of the key principles in terms of successfully changing someone’s diet are as follows:
1. Enlist the teen’s or adult’s cooperation by enthusiastically explaining the eating program and its likely benefits to health, pain relief, comfort, bowel function, cognition, and emotional regulation. A relatively simple explanation in words, pictures, or Carol Gray type social stories is critical to the individual’s understanding of why their food may appear different, why selections at favorite restaurants may be modified, why different grocery stores are selected, or why the individual may bring his or her own snacks, treats, or special foods along to parties, school functions, or social events.
2. Preparation is key: after reading Breaking the Vicious Cycle by Elaine Gottschall, reviewing the pecanbread.com website and the breakingtheviciouscycle.info website, carefully think about how to dovetail some of the individual’s food preferences and the recipes that are consistent with the Specific Carbohydrate Diet. Go shopping and purchase fresh fruits, vegetables, meats, poultry, nuts, and eggs. Do not purchase any prepared or prepackaged foods, as they invariably contain milk or grain fillers, MSG, corn syrup, and many other additives that are injurious to an individual who requires the SCD. The only items that you initially require that need to be purchased online or at a specialty or health food store are: almond flour, coconut flakes, coconut oil, ghee, pure vanilla extract, and local honey (local honey is preferable, but any good quality honey is acceptable).
3. Make some uninterrupted time available in the kitchen for the cook to experiment with recipes and to prepare meals and snacks for the entire week. Allow at least 2 to 4 hours of quiet time in the kitchen per week. It is extremely helpful to have a Cuisinart type machine and heavy duty bar type blender available, as well as a good quality sharp knife. Keep food available for the first two days, but freeze the next several days’ food. Many of the snacks — especially the cookies — are delicious right out of the freezer. Always plan for unusual events. Always have extra frozen snacks and at least one emergency quick food available, such as chicken nuggets, for when people get home late, are extra tired, or are on the run. Always be prepared.
4. The entire family should go on the diet for two reasons: The first is that food will be better, the individual will feel more included, the opportunity to “cheat” off another family member’s plate is eliminated, and the entire family shows support for the individual’s efforts. The second reason is that is it not at all unusual for others in the family to have the same or similar GI issues, food intolerances, food sensitivities, or unbalanced flora and yeast issues as the member with autism. Often, there are major health benefits for all family members.
5. SCD will not work for everyone all the time; and all the foods that are SCD-legal may not be tolerated by certain individuals. Many people cannot tolerate cashews for example, as they will get diarrhea. Some children initially cannot tolerate apples or bananas until some initial gut healing takes place. It is helpful to maintain a food diary and look for any patterns of foods that may not be well tolerated. Monitor for red ears and face, emotional “meltdowns,” diarrhea, constipation, and vomiting. It may take some time to find out which food is the culprit, but because fewer foods are being eaten, it may become apparent, and the offending item should then be eliminated, at least for the foreseeable future. It is common to have serious trepidation in terms of changing the diet of someone who may be eating a very self-restricted diet, such as people who only eat one or two foods or only foods of a certain color or consistency. However, when starch is removed from the diet and when problematic foods such as commercial snacks are removed from the home, the person will invariably expand their diet and will eventually begin to eat the SCD foods available to them, even if there is an initial period of reluctance.
6. Gluten- and Casein-Free Diet – There is a considerable amount of research in this area and plenty of parent reports of children doing well when they remove gluten and dairy from their child’s diet. The second stage of digestion is not working correctly and, as a result, casomorphines from dairy and gluteomorphines from gluten do not get digested properly. So, they get absorbed into the bloodstream causing problems with the immune system and brain function. The theory behind this diet is sound; the problem lies in the application. Processed carbohydrates are the very foods that feed pathogens. Many families remove the gluten and casein; however, they often transfer their child’s diet from breakfast cereals, pasta, milk, chips, hotdogs, and mac and cheese, to a gluten-free/dairy-free processed carbohydrate diet made of rice, sugar, soy, potato starch, and commercial products full of denatured fats and lots of ingredients children with autism should not have. It is easy to find companies selling products that parents believe are okay because it is gluten-free; however, in common gluten-free products, the ingredients are potato starch, sugar, rice flour, and milled corn. It is unfortunate that many parents have a false sense of security that just because a food is gf/cf, it is not deleterious.
In Addition to Diet
Although the SCD does starve out many pathogens, people with autism often need additional treatments to adequately treat an overgrowth of yeast, as well as clostridia and parasites.
1. Obtain a comprehensive stool analysis that will assess for digestion, absorption, and the presence of yeast, pathogenic bacteria, and parasites, and that will provide sensitivities of these organisms to specific antibiotics, antifungal medications, and natural treatments. This must be ordered by a treating practitioner.
2. Obtain an organic acids test that will provide information about the presence of yeast and pathogens by measuring their toxic by-products, and that will also provide information concerning the need for supplementation with certain vitamins and minerals to break down related compounds required for normal metabolic processes.
3. Many people with autism benefit significantly from supplementation with a high quality vitamin and mineral tablet, probiotics, and digestive enzymes. Most individuals who do test positive for clostridia or yeast benefit dramatically from supplementation with sacchromyces boulardii.
Strategies Beyond Diet and Supplements
Teenagers with autism are teenagers first. They are undergoing development, puberty, and all the changes that are inherent to maturing. At this point in life, it is helpful to place emphasis on a “whole life plan” for the person. Professionals and volunteers should meet regularly to carefully and methodically make concrete plans and outline goals to help the teen maximize his or her potential, develop interests and skills, consider college, employment options, and prepare for adult life. It is amazing that when goals are committed to writing, they actually become concrete and materialize. This process cannot be left to chance. Teenagers with autism need help in identifying their strengths, and they need adult advocacy and support to pursue their interests. When performing whole life planning, it is important to not be constrained by the “labels” that have historically been placed upon the individual. Remove the labels and barriers, and look at the person’s strengths and interests. Even if a person has been described as “low functioning,” this may well indicate that they just do not have the verbal ability to tell you what they know and how much they have learned. Assume that the person has at least normal intelligence.
There is actually cause for celebration for our teenage and adult children with autism: the educational system is starting to respond for many people on the high school, college, and specialty school levels; biomedical treatments are more widely available that can make monumental differences in a person’s health, which impacts physical, cognitive, and emotional wellness; employment opportunities and meaningful work and recreation options are growing; and people with autism are leading happy, fulfilling, joyous lives. Individual differences are cause for celebration, and there is no need to compare people to one another, especially when it is much more meaningful to look at an individual teen’s or adult’s progress. When teenagers or adults with autism are compared or measured against other individuals who are considered to be “neurotypical,” we miss the opportunity to celebrate their progress and successes. Biomedical treatment is a tool to help the person maximize their health, and, therefore, their potential.
As family members and/or professionals, we are always placing ourselves in the role of corrector, educator, and protector of people with autism; we should also remember to take the opportunity to place ourselves in the role of observer and student. People with autism have much to teach us about honesty, detail, perseverance, acceptance, and love.