Over the years, as a consultant to families of children with autism, and in conjunction with the supervision of their healthcare professionals, I have been asked to share tips that families can immediately begin implementing themselves when they receive or strongly suspect anautism spectrum diagnosis. These suggestions are not meant to represent or replace medical advice, but to be used in unison with their healthcare provider’s ideas for care. It goes without saying that the early identification and treatment of autism profoundly affect a child’s overall development. Scientific research has validated that when interventions are started at an early age (before 5 years old) children with autism will have a greater chance for successful outcomes (Lovaas, 1987; Smithet al., 2000). However, even teenagers and adults have been known to make progress, so let’s get started!
Read a good book.
Be inspired, read a book.
For example, an excellent, user-friendly primer that discusses the fundamentals of biomedical treatments for autism—because many of these children suffer from real medical conditions—is Children with Starving Brains, Fourth Edition, by Dr. Jaquelyn McCandless, whose grandchild has autism and was the inspiration for this book. The premise is that autism is a complex biomedical disorder that results in significant malnutrition of the brain. The book provides a step-by-step treatment guide for parents and doctors. Dr. McCandless’ “broad-spectrum approach” describes important diagnostic tools and available therapies and identifies safe and effective treatment options to improve the health of children with autism.
Another inspiring book for parents of newly diagnosed children is Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother’s Story of Research & Recovery by Karyn Seroussi. When the author’s son was diagnosed with autism at 19 months, she was determined to do everything in her power to help heal her child. In addition to pursuing traditional recommendations like speech therapy and behavior modification, she devoted considerable time and energy, often against medical advice, to researching alternative treatment approaches. Through her persistence, she uncovered a growing body of scientific literature that supported connections between autism and diet. Based upon this evidence, she became convinced that, in her son’s case, the inability to digest certain food proteins contributed to his autism symptoms. The book describes how she systematically eliminated foods that she suspected were problematic (in his case these were dairy and wheat), and how after removing these from his diet, he made dramatic improvements, so much so, that by age 4 he was essentially indistinguishable from his peers.
There is also an excellent, groundbreaking book written by Dr. Doris J. Rapp, Is this your Child? Discovering and Treating Underecognized Allergies in Children and Adults, that describes simple ways to identify common foods, chemicals, or allergic substances that could be the culprits behind inappropriate behaviors displayed by children and adults.
Plug into a good national advocacy organization and a good, positive local support group.
These groups should believe that autism is treatable and children can recover.
The power of shared experiences, in particular from those who are living with autism day in and day out, is invaluable. In many cases, it’s not the doctors or the therapists who are the experts − it’s the mothers, fathers, siblings, and grandparents who are because they know what it’s like to live with someone who has autism. There is a healing power in telling one’s stories and experiences. Individuals’ sharing of stories can commiserate and empathize, listen, support, and guide. Stories also hold lessons from others, a new and/or renewed appreciation of what is valued as important in life now as it relates to experiences of others, and can be extremely inspirational. Talking can also help increase your understanding of the disorder, help you cope with loss of the life you thought you’d have, help you deal with anger and frustration, and finally help you learn to live with autism and to develop resiliency.
Organizations like Autism One, www.autismone.org, Talk About Curing Autism (TACA), www.tacanow.org, the National Autism Association (NAA), www.nationalautismassociation.org, all are excellent sources where you can find local chapters or online groups where experiences can be shared.
Start a good, basic multivitamin/mineral.
Supplement for a more balanced availability of essential nutrients.
In the United States, although there are social nutritional programs that ensure the availability of food, nutritional deficiencies still occur, and nutritional ignorance rather than simple food deprivation is involved in a significant proportion of reported cases of severe under-nutrition. For example, 15 percent of Americans are vitamin C deficient (Hampl et al., 2000); in addition, low levels of other vitamins and minerals, including calcium, iron, folic acid, magnesium, vitamin A, iron, zinc, and iodine have been documented as a common problem (Murray, 1996). Based on these findings, it is not surprising that a number of studies demonstrated the benefits of targeted multivitamin/mineral nutritional supplementation in improving IQs, scholastic test scores, and early neurological development as well as behavioral, cognitive, and academic gains in children with learning disabilities (Shoenthaler, 2000).
Additionally, recent research has now established that nutritional deficiency is commonly associated with impaired immune responses, particularly cell-mediated immunity, phagocyte function, cytokine production, secretory antibody response, antibody affinity, and the complement system (the biochemical processes that are involved in facilitating how antibodies clear pathogens from the body) (Chandra, 1977). Many children suffering from autism have immune system dysregulation issues (Ashwood et al., 2006). Many studies find or suggest that people with autism have functionally low levels of essential vitamins and minerals. Furthermore, because many children with autism have self-imposed eating restrictions, their diets don’t provide them with the nutrients to support some of the fundamental biochemistry of their body. However, nutritional insufficiency is entirely preventable via nutritional supplementation.
There are thousands of multivitamin supplement products, and choosing the best one can be confusing. Choose a product that is specifically formulated for children with special needs and sensitivities. Research suggests that certain dietary supplements can improve symptoms of autism. Before trying any of them, though, it’s important to understand what their purpose is—and especially to consult with a healthcare provider about dosage, recommended daily allowance (RDA), and possible unwanted side effects.
Try the gluten-free/casein-free diet.
Dietary intervention may be that one piece of the puzzle that helps a child with autism on the road towards recovery.
A parent survey conducted by the Autism Research Institute (ARI), www.autism.com, lists the GF/CF (gluten-free, casein-free) diet as one of the most successful interventions for the treatment of autism spectrum disorders. Two scientific theories support implementation of a GF/CF diet. One is based upon the concept that the digestive systems of some people do not completely break down gluten and casein proteins and that these incompletely digested proteins in the gastrointestinal tract permeate into the bloodstream and adversely affect different organs of the body, including the brain. The theory is that these incompletely broken down proteins have a structure similar to opiate-like substances and have an opiate effect on the brain, which, in turn, results in abnormal behaviors, difficulties, and problems with normal brain function and development. The second theory suggests that some children are allergic to particular foods. The most obvious place for an allergic reaction to food to take place is in the gastrointestinal tract because this is where the largest portion of the immune system resides in the body. In these cases, the body mistakes a protein in food as being harmful and creates a defense against it (antibody). Allergy symptoms can include hypersensitivity and chronic inflammation, both of which can affect the gastrointestinal tract and result in constipation, bloating, gas, diarrhea, and abdominal pain. Often, allergy testing will be pursued as means to provide “proof” to validate or justify why families are considering implementation of a GF/CF diet to other family members and friends; however, many times, even when no allergy is confirmed, many parents of children with autism still choose to try the GF/CF diet. Positive changes in speech and behavior are some of the benefits that are most often reported.
Overall, regardless of the explanation behind the successes, anecdotal evidence describes huge improvements and a dramatic decrease in symptoms such as gastrointestinal problems (diarrhea, constipation, and reflux) and behavior and speech difficulties with the use of the GF/CF diet.
Since 1999, a website devoted to sharing information about the gluten-free/casein-free diet at www.GFCFDiet.com has been an online resource, providing invaluable information about GF/CF diet implementation. The website is user-friendly and provides a centralized location for parents to find information as well as support from other parents who are also using dietary therapy and intervention. It not only provides lists of products to guide you through grocery shopping, but also other relevant information (pertaining to things like additives and preservatives).
The Autism Network for Dietary Intervention (ANDI), http://www.autismndi.com, is another online resource that can help families get started on and maintain a GF/CF diet. ANDI was established by parent researchers Lisa Lewis and Karyn Seroussi. The ANDI mission is simple: To help parents understand, implement, and maintain dietary intervention for their autistic children.
A good first book about trying the GF/CF diet is Lisa Lewis’ book titled Special Diets for Special Kids: Understanding and Implementing Special Diets in the Treatment of Autism and Related Developmental Disorders. This book is the most highly recommended book by parents who are already implementing the GF/CF diet. It is a must for anyone thinking about trying the GF/CF diet. The book includes many quick recipes as well as a thorough explanation of the ins and outs of implementing the GF/CF diet.
There are many other special diets, such as the Specific Carbohydrate Diet (SCD, which eliminates complex carbohydrates) and the Body Ecology Diet (which includes the use of cultured foods) that parents in the autism community have also considered and tried. The theory supporting some of these specialized diets is that often when certain types of proteins and carbohydrates are restricted, negative gastrointestinal symptoms and associated negative behavior issues are alleviated.
Additionally, many parents have found that by also removing soy from their child’s diet as well as focusing on using mainly organic foods, gastrointestinal and behavior issues will improve. Information about these and other dietary options can be found on the Web.
Add a digestive enzyme.
Help the gastrointestinal tract function, and optimize therapeutic diets.
Proper nutrition and digestion is important for everyone. Normally, the body produces digestive enzymes that are responsible for breaking foods down into the essential nutrients required for optimal cell, tissue, and organ function throughout the body. This is a key step in digestion because once adequate breakdown has occurred, the body can then absorb the nutrients in the foods. If digestive enzymes are insufficient or ineffective, nutritional deficiency can result. If inadequacies in digestion do exist, supplementing with digestive enzymes can facilitate the breakdown of food proteins, carbohydrates, meats, fats, dairy, wheat, soy, vegetables, and other foods. Positive results are often observed quickly; generally, improvements of some kind, including increased attention and a general sense of well-being, are observed within the first 3-4 weeks of administration. Supplementing with digestive enzymes is an inexpensive way to help the body absorb nutrients and other supplements. Therapeutic enzymes can also be used to address issues associated with yeast, bacteria, viruses, and detoxification.
Add a probiotic.
Bolster the immune system.
People’s bodies are filled with microorganisms, both in and on the skin as well as in the gastrointestinal tract. Good bacteria are a vital component for developing the immune system, protecting against microorganisms that could cause disease, and aiding proper digestion and absorption of nutrients from foods.
There is a delicate balance among the millions of intestinal microflora that live in the gut. In general, a healthy gastrointestinal tract contains a high percentage of good bacteria that keep pathogenic micro-organisms such as E. Coli, Clostridia, and Candida in check and prevent them from causing disease.
However, when a person develops an infection, the proportion of harmful bacteria increases; additionally, any antibiotics that are used to treat the infection destroy both friendly and harmful bacteria. In addition to antibiotics, various drugs, vaccinations, and heavy metals such as mercury can lower the immune system and affect the intestinal flora negatively, thereby creating a favorable environment for opportunistic pathogens. Since there is a direct relationship between the gastrointestinal tract and the brain, a toxic intestinal environment also affects the brain.
Additionally, because there is a direct relationship between the cells in the digestive tract and the cells of the immune system, probiotics can play a role here as well. Inflammation, an immune system response, in the gastrointestinal tract can often be attributed to microflora imbalances. Therefore, immune system function can be improved by increasing the number of friendly bacteria there. The theory is that if the microorganism community in the intestinal tract is altered (as by introducing probiotic bacteria), then the immune system’s defenses can potentially be positively affected.
Probiotics are the most natural way to help normalize the intestinal microflora and are very good at supporting proper intestinal function as well as assisting in healing the gastrointestinal tract. It is essential to use probiotics prior to, during, and after any intervention (like antibiotics and/or steroids) that could potentially negatively affect gastrointestinal flora. Probiotics offset some of the side effects from antibiotics like gas, cramping, or diarrhea. Improving the balance in the intestinal flora communities relieves symptoms associated with gastrointestinal distress, and as these conditions improve, negative symptoms often associated with autism (biting, hitting, screaming, head banging, and rocking) will diminish.
Start a home intervention program with your child.
Engage your child as much as possible at home.
What is the number one behavioral therapy for autism? The one that the family chooses! All intervention programs generally focus on reaching the same goals: (1) reducing negative behaviors and (2) increasing acceptable behaviors in order to optimize the developmental potential for the child. There are a variety of modalities, and the choice is ultimately up to you and what works best for your family and your family’s lifestyle.
There is no single treatment protocol that works for all children with autism, but most children seem to respond best to some sort of highly structured behavioral program. Starting a behavioral intervention program as soon as possible and engaging your child as much as possible at home is a great place to start. Some of the most common intervention modalities are applied behavior analysis (ABA); DIR®/Floortime™; the Picture Exchange Communication System (PECS); Social Communication, Emotional Regulation and Transactional Support (SCERTS®); Relationship Development Intervention (RDI®); verbal behavior; and the school-based Treatment and Education of Autistic and Communication related handicapped Children (TEAACH).
A good book about behavioral intervention with practical hands-on information is Behavioral Intervention for Young Children with Autism, Second Edition by C. Maurice, G. Green and S.C. Luce. Research has demonstrated that many young children with autism can derive significant, long-term, and—in many cases—dramatic benefits from early intervention based on the principles of applied behavior analysis. This manual was inspired by research with early behavioral intervention for the treatment of autism and provides a wealth of practical information for parents, professionals, and others involved with helping all children with behavioral issues, including those on the autism spectrum. The manual provides a range of information covering topics such as treatment options, how to differentiate between scientifically-validated interventions and fads or “miracle cures,” and assessments so that children’s skills, needs, and progress can be objectively and systematically evaluated.
Another style of behavioral intervention is described in Engaging Autism: Using the Floortime Approach to Help Children Relate, Communicate, and Think (A Merloyd Lawrence Book) by S. Greenspan and S. Weider. This book explains the Floortime method, which utilizes engagement and play to teach social interaction and communication skills to young children with autism. RDI is a parent-based intervention that focuses on the core problems of gaining friendships, feeling empathy, expressing love, and being able to share experiences. The RDI Book: Forging New Pathways for Autism, Asperger’s and PDD with the Relationship Development Intervention Program by S. Gutstein discusses the shared experiences model of systematically teaching motivation skills by experiencing sharing interactions.
Remove what’s bad; add what’s good.
This applies to both ingestible and tangible environmental influences.
Eat healthfully: For ingestibles, this includes introducing a more healthful diet, such as using more whole foods and using fewer processed foods or food with preservatives; pay particular attention to artificial chemicals/additives/colorings added to food and beverage items. By eliminating some of the additives and introducing more whole foods, children who are sensitive to these items seem to improve in behavior relatively quickly; this is something you can do right away.
After all this, if you need to still remove some foods or add some supplements, do that; however, try to restrict making any changes to one at a time and allowing several days between any modification so that you can be determine if its tolerated, you can assess if there are any delayed reactions, and to allow the body to adjust to any improvements.
Your water source is very important. Water is the most essential, basic human need. Without water, there is no life. However, many water supplies in many U.S. cities have been found to host a vast array of contaminants including pharmaceuticals, organic and non-organic chemicals, and microorganisms.
Contaminants in drinking water can cause a range of health-related effects in children, including developmental effects like learning disorders, and acute effects resulting in gastrointestinal illnesses like irritable bowel syndrome or Crohn’s disease. Additionally, infants and children are particularly more susceptible to water contaminants because their immune systems are less developed than those of adults. Therefore, it always is best to try to avoid contaminated water by drinking, cooking, and bathing in either purified or filtered water.
Clean up indoor air and the surrounding environment: The cleaning products that are used inside and outside of the home can be a substantial source of indoor air pollution. Whenever possible, use nontoxic products; look for products with organic ingredients, or completely reduce your use of harsh cleaning chemicals altogether by investing in microfiber cloths and/or handheld steam cleaners, both of which effectively clean with only water. While trying to eliminate as many chemical cleaning products as possible, also try to ensure that your home is properly ventilated. Air purifiers can be useful in capturing residual contaminants.
It is important to avoid pesticides. Pesticides have been linked to a range of health problems, including asthma, hyperactivity, behavior problems, learning disabilities, and abnormal brain development.
As you are cleaning up environmental exposures inside and out, consider Epsom salt baths as an inexpensive way to help detoxify the body.
Go to a conference held by an organization that believes that autism is treatable and children can recover from an autism diagnosis.
Knowledge is power and empowering. Since searching for and finding the right information to help your child can be overwhelming for families affected by autism, go to a conference held by an organization that believes that autism is treatable and that there are children with autism who can heal and recover from an autism diagnosis. Whether you are just starting out on the autism journey or are an experienced parent, learning from nationally-known experts who present at these conferences can empower you with knowledge about how to help your child. If you are a parent of a child with autism, going to an autism conference not only provides education, but also support. It provides a safe, supportive, learning environment that can be a life-changing experience.
Select a healthcare provider.
Find an enlightened doctor who listens, who knows the real physiological underpinnings of an autism diagnosis, who believes that autism is treatable and that children can recover, and who provides regular medical monitoring.
The importance of finding an enlightened doctor who listens, who knows the real physiological underpinnings of an autism diagnosis, who believes that autism is treatable and that children can recover, and who provides regular medical monitoring must be emphasized. Select someone who will work with you to guide your child’s treatment plan. Selecting the right healthcare provider is just the first step that parents can take to initiate the healing process for their child. Doctor shop. Look around for medical professionals; you don’t have to go with the first person you meet. Talk to several healthcare providers before you choose your treatment professional. Make sure you see eye to eye and can communicate with each other. This will be a long-term relationship, and you want to make sure that you get along and, more importantly, that the practitioner will respect you and your concerns, as well as your child and your child’s individual needs. The organizations mentioned under point number 9 above are good resources to ask about practitioners that other parents have consulted with.
So many children and parents have seen the road toward healing autism become easier. Now, there is more reason than ever to have hope. And hope is one of the greatest interventions!
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- McCandless, J, 2009. Children with Starving Brains A Medical Treatment Guide for Autism Spectrum Disorder, Fourth Edition, Bramble Books.
- Seroussi, K, 2000. Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother’s Story of Research & Recover, Simon & Schuster.
- Rapp, DJ, 1992. Is this your Child? Discovering and Treating Underecognized Allergies in Children and Adults, William Morrow & Co Paper.
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- Shoenthaler S, 2000. The effect of vitamin-mineral supplementation on the intelligence of American schoolchildren: a randomized, double- blind, placebo-controlled trial. J Altern Complimentary Med. 6:19–29.
- Chandra RK and PM Newberne, 1977. Nutrition, Immunity and Infection. Mechanism of Interactions, New York: Plenum.
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- Ashwood P, Willis, S and J Van de Water, 2006. The immune response in autism: a new frontier for autism. J Leuock Biol. 89(1):1-15.
- Lewis, L, 1998. Special Diets For Special Kids: Understanding and Implementing Special Diets in the treatment of Autism and Related Developmental Disorders, Future Horizons.
- Maurice, C, Green G, and SC Luce, 1996. Behavioral Intervention for Young Children with Autism, Second Edition Austin: Pro-Ed.
- Greenspan S and S Weider, 2006. A Engaging Autism: Using the Floortime Approach to Help Children Relate, Communicate, and Think, Cambridge: De Capo Press.
- Gutstein, S, 2009. The RDI Book: Forging New Pathways for Autism, Asperger’s and PDD with the Relationship Development Intervention Program, Connections Center.