By Karyn Seroussi. Reprinted from Parents Magazine, Feb 2000, with permission from the author. Updated June 2006.
When the doctors said our son would be severely disabled for life, we set out to prove them wrong.
When the psychologist examining our 18-month-old son told me that she thought Miles had autism, my heart began to pound. I didn’t know exactly what the word meant, but I knew it was bad. Wasn’t autism some type of mental illness – perhaps juvenile schizophrenia? Even worse, I vaguely remembered hearing that this disorder was caused by emotional trauma during childhood.
In an instant, every illusion of safety in my world seemed to vanish. Our pediatrician had referred us to the psychologist in August 1995 because Miles didn’t seem to understand anything we said. He’d developed perfectly normally until he was 15 months old, but then he stopped saying the words he’d learned – cow, cat, dance – and started disappearing into himself. We figured his chronic ear infections were responsible for his silence, but within three months, he was truly in his own world. Suddenly, our happy little boy hardly seemed to recognize us or his 3-year-old sister.
Miles wouldn’t make eye contact or even try to communicate by pointing or gesturing. His behavior became increasingly strange: He’d drag his head across the floor, walk on his toes (common in autistic children), make odd gurgling sounds, and spend long periods of time repeating an action, such as opening and closing doors or filling and emptying a cup of sand in the sandbox. He often screamed inconsolably, refusing to be held or comforted. And he developed chronic diarrhea.
I was informed that autism – or autism spectrum disorder, as doctors now call it – is not a mental illness. At the time, it was thought to be a developmental disability that was primarily genetic, and caused by an anomaly in the brain. The US National Institutes of Health estimated that as many as 1 in 500 children were affected. But according to several recent studies, the incidence has been rapidly rising: In Florida, for example, the number of autistic children has increased nearly 600 percent in the last ten years. Nevertheless, even though it is more common than Down Syndrome, autism remains one of the least understood developmental disorders.
We were told that Miles would almost definitely grow up to be severely impaired. He would never be able to make friends, have a meaningful conversation, learn in a regular classroom without special help, or live independently. We could only hope that with behavioral therapy, we might be able to teach him some of the social skills he’d never grasp on his own.
I had always thought that the worst thing that could happen to anyone was to lose a child. Now it was happening to me but in a perverse, inexplicable way. Instead of condolences, I got uncomfortable glances, inappropriately cheerful reassurances, and the sense that some of my friends didn’t want to return my calls.
After Miles’ initial diagnosis, I spent hours in the library, searching for the reason he’d changed so dramatically. Then I came across a book that mentioned an autistic child whose mother believed that his symptoms had been caused by a cerebral allergy to milk. I’d never heard of this, but the thought lingered in my mind because Miles drank an inordinate amount of milk – at least half a gallon a day.
I also remembered that a few months earlier, my mother had read that many kids with chronic ear infections are allergic to milk and wheat. You should take Miles off those foods and see if his ears clear up, she said. Milk, cheese, pasta, and Cheerios are the only foods he’ll eat, I insisted. If I took them away, he’d starve.
Then I realized that Miles’ ear infections had begun when he was 11 months old, just after we had switched him from soy formula to cow’s milk. He’d been on soy formula because my family was prone to allergies, and I’d read that soy might be better for him. I had breast-fed until he was 3 months old, but he didn’t tolerate breast milk very well – possibly because I was drinking lots of milk. There was nothing to lose, so I decided to eliminate all the dairy products from his diet.
What happened next was nothing short of miraculous. Miles stopped screaming, he didn’t spend as much time repeating actions, and by the end of the first week, he pulled on my hand when he wanted to go downstairs. For the first time in months, he let his sister hold his hands to sing Ring Around a Rosy. Two weeks later, we kept our appointment with a well-known developmental pediatrician. Dr. Susan Hyman gave Miles a variety of tests and asked a lot of questions. We described the changes in his behavior since he’d stopped eating dairy products. Finally, Dr. Hyman looked at us sadly. I’m sorry, the specialist said. Your son is autistic. I admit the milk allergy issue is interesting, but I just don’t think it could be responsible for Miles’ autism or his recent improvement.
We were terribly disheartened, but as each day passed, Miles continued to get better. A week later, when I pulled him up to sit on my lap, we made eye contact and he smiled. I started to cry – at last he seemed to know who I was. He had been oblivious to his sister, but now he watched her play and even got angry when she took things away from him. Miles slept more soundly, but his diarrhea persisted. Although he wasn’t even 2 yet, we put him in a special nursery school three mornings a week and started an intensive one-on-one behavioral and language program that Dr. Hyman recommended.
I’m a natural skeptic and my husband is a research scientist, so we decided to test the hypothesis that milk affected Miles’ behavior. We gave him a couple of glasses one morning, and by the end of the day, he was walking on his toes, dragging his forehead across the floor, making strange sounds, and exhibiting the other bizarre behaviors we had almost forgotten.
Then, after several weeks of steady improvement, the behaviors briefly returned. We were extremely puzzled until we were informed that Miles had eaten some cheese at nursery school. We considered this fairly convincing evidence that dairy products were somehow related to his autism.
I wanted Dr. Hyman to see how well Miles was doing, so I sent her a video of him playing with his father and sister. She called right away. I’m simply floored, she told me. Miles has improved remarkably. Karyn, if I hadn’t diagnosed him myself, I wouldn’t have believed that he was the same child.
I had to find out whether other kids had had similar experiences. I bought a modem for my computer – not standard in 1995 – and discovered an autism support group on the Internet. A bit embarrassed, I asked, Could my child’s autism be related to milk?
The response was overwhelming. Where had I been? Didn’t I know about Karl Reichelt in Norway? Didn’t I know about Paul Shattock in England?
These researchers had preliminary evidence to validate what parents had been reporting for almost 20 years: Dairy products exacerbated the symptoms of autism.
Miles’s father Alan, who has a Ph.D. in chemistry, got copies of the journal articles that the parents had mentioned online and went through them all carefully. As he explained it to me, it was theorized that a subtype of children with autism break down milk protein (casein) into peptides that affect the brain in the same way that hallucinogenic drugs do. A handful of scientists had discovered compounds containing opiates – a class of substances including opium and heroin – in the urine of autistic children. The researchers theorized that either these children were missing an enzyme that normally breaks down the peptides into a digestible form, or the peptides were somehow leaking into the bloodstream before they could be digested.
In a burst of excitement, I realized how much sense this made. It could explain why Miles had developed normally for his first year, when he drank only soy formula. It could also explain why he had later craved milk: Opiates are highly addictive. What’s more, the physical features of autistic children have often been compared to that of morphine users (including insensitivity to pain, bowel problems, and abnormal changes in pupil size), and their odd behavior has been compared with that of those under the influence of hallucinogenic drugs.
Alan also told me that the other type of protein being broken down into a toxic form was gluten – found in wheat, oats, rye, and barley, and commonly added to thousands of packaged foods. The theory would have sounded farfetched to my scientific husband if he hadn’t seen the dramatic changes in Miles himself and remembered how Miles had self-limited his diet to foods containing wheat and dairy. As far as I was concerned, there was no question that the gluten in his diet would have to go. Busy as I was, I would learn to cook gluten-free meals. People with celiac disease are also gluten-intolerant, and I spent hours online gathering information.
Within 48 hours of being gluten-free, 22-month-old Miles had his first solid stool, and his balance and coordination noticeably improved. A month or two later, he started speaking – zawaff for giraffe, for example, and ayashoo for elephant. He still didn’t call me Mommy, but he had a special smile for me when I picked him up from nursery school. However, Miles’ local doctors – his pediatrician, neurologist, geneticist, and gastroenterologist – still scoffed at the connection between autism and diet. Even though dietary intervention was a safe, non-invasive approach to treating autism, until large controlled studies could prove that it worked, most of the medical community would have nothing to do with it.
So Alan and I decided to become experts ourselves. We began attending autism conferences and phoning and e-mailing the European researchers. I also organized a support group for other parents of autistic children in my community. Although some parents weren’t interested in exploring dietary intervention at first, they often changed their mind after they met Miles. Not every child with autism responded to the diet, but eventually there were about 50 local families whose children were gluten- and casein-free with exciting results. And judging by the number of people on Internet support lists, there were thousands of children around the world responding well to this diet.
Fortunately, we found a new local pediatrician who was very supportive, and Miles was doing so well that I nearly sprang out of bed each morning to see the changes in him. One day, when Miles was 2 ½, he held up a toy dinosaur for me to see. Wook, Mommy, issa Tywannosauwus Wex! Astonished, I held out my trembling hands. You called me Mommy! I said. He smiled and gave me a long hug.
By the time Miles turned 3, all of his doctors agreed that his autism had been completely resolved. He tested at eight months above his age level in social, language, self-help, and motor skills, and he entered a regular preschool with no special-ed supports. His teacher told me that he was one of the most delightful, verbal, participatory children in the class. At 6, Miles was among the most popular children in his first-grade class. He read at a fourth-grade level, had good friends, and acted out his part in the class play with flair. He became deeply attached to his older sister, and they spent hours engaged in the type of imaginative play that is never seen in kids with autism.
My worst fears were never realized. We were terribly lucky.
But I imagined all the other parents who might not be fortunate enough to learn about the diet. So in 1997, I started a newsletter and international support organization called Autism Network for Dietary Intervention (ANDI), along with another parent, Lisa Lewis, author of Special Diets for Special Kids (Future Horizons, 1998).
We’ve gotten thousands of letters and e-mails from parents worldwide whose kids use the diet successfully. Although it’s best to have professional guidance when implementing the diet, sadly, many doctors are still skeptical. As I continue to study the emerging research, it has become increasingly clear that autism is a disorder related to the immune and gastrointestinal systems. Many autistic children have several food allergies, including milk and wheat, and nearly all the parents in my support group seemed to have at least one immune-related problem: thyroid disease, Crohn’s disease, celiac disease, rheumatoid arthritis, chronic fatigue syndrome, fibromyalgia, or allergies. Autistic children are probably genetically predisposed to immune-system abnormalities, but what triggers the actual disease?
Many of the parents swore that their child’s autistic behavior began at 15 months, shortly after the child received the MMR (measles, mumps, rubella) vaccine. When I examined such evidence as photos and videotapes to see exactly when Miles started to lose his language and social skills, I had to admit that it had coincided with his MMR – after which he had gone to the emergency room with a temperature of 106°F and febrile seizures. But some of his health problems had started even earlier, including yeast infections, skin rashes, red cheeks and ears, excess mucus in his throat, poor sleeping habits, and a severe reaction to a DPT vaccine at 4 months old.
Studies linking the measles portion of the vaccine to damage in the small intestine are still considered inconclusive, but they might help explain the mechanism by which the hallucinogenic peptides leak into the bloodstream. In addition, the role of the buildup of toxic metals, from vaccines or other sources, needs to be better understood. Children with autism appear to have difficulty excreting metals such as mercury, and their behavior usually improves when these are removed. If vaccines are indeed found to play a role in triggering autism, we must find out whether some children are at higher risk due to existing immune problems, and take immediate measures to create a safe and effective vaccination program.
Several researchers are now studying the abnormal presence of peptides in the urine of autistic children. My hope is that routine diagnostic tests will be developed to identify children with autism at a young age, and to treat them appropriately. When autism is recognized as a treatable medical disorder, the gluten and dairy-free diet and other biomedical interventions will move from the realm of alternative medicine into the mainstream.
The word autism, which once meant so little to me, has changed my life profoundly. It came to my house like a monstrous, uninvited guest but eventually brought its own gifts. I’ve felt twice blessed – once by the amazing good fortune of reclaiming my child and again by being able to help other autistic children who had been written off by their doctors and mourned by their parents.
Karyn Seroussi is the author of Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother’s Story of Research and Recovery (Simon & Schuster 2000, Broadway Books, 2002)
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Got Autism? Learn About the Link Between Dairy Products and the Disorder
Autism and autism spectrum disorder are complex disorders of brain development that may be associated with a wide range of symptoms, such as limited verbal communication and difficulties with social interactions. PETA has created a billboard to alert the public to the connection between this condition and dairy-product consumption.
More research is needed, but scientific studies have shown that many autistic kids improve dramatically when put on a diet free of dairy foods. One study of 20 children found a major reduction in autistic behavior in kids who were put on a casein-free diet (casein is a component of cow’s milk). And another study done by researchers at the University of Rome showed a “marked improvement” in the behavior of autistic children who were taken off dairy products.
The reason why dairy foods may worsen autism is being debated. Some suggest that the gastrointestinal problems so often caused by dairy products cause distress and thus worsen behavior in children with autism.
Regardless of the cause, testimonials show that many people with this condition may be able to find relief with a simple dietary change—removing milk from their diet. The Internet contains numerous heart-wrenching stories from parents of kids who had suffered the worst effects of autism for years before dairy foods were eliminated from their children’s diets. Here is one mother’s story:
Then I realized that Miles’ ear infections had begun when he was 11 months old, just after we had switched him from soy formula to cow’s milk. He’d been on soy formula because my family was prone to allergies, and I’d read that soy might be better for him. I had breast-fed until he was 3 months old, but he didn’t tolerate breast milk very well—possibly because I was drinking lots of milk. There was nothing to lose, so I decided to eliminate all the dairy products from his diet. What happened next was nothing short of miraculous. Miles stopped screaming, he didn’t spend as much time repeating actions, and by the end of the first week, he pulled on my hand when he wanted to go downstairs. For the first time in months, he let his sister hold his hands to sing “Ring Around a Rosy.”
It isn’t surprising that dairy products may worsen this condition, considering that milk has already been strongly linked to cancer, Crohn’s disease, and other serious health problems. Anyone who wants to alleviate the effects of autism should try giving cow’s milk the boot and switch to healthy vegan alternatives instead. To learn more about a diet free of dairy products, order our free “Vegetarian Starter Kit” today.
8 Facts About the ‘Autism Diet’
One of the most popular alternative treatments for autism is the gluten-free casein-free diet (GFCF). It has not been proven to work, and many doctors are cautious about it, but if you’re wondering if it could help your child, read the facts below.
Jacqueline Laurita, 42, mom of three and star of the reality show The Real Housewives of New Jersey, recently revealed her 3-year-old son, Nicholas, was diagnosed with autism. Since the diagnosis, Laurita has sought treatment for her son, which includes therapy and following a dairy-free, gluten-free diet that some experts believe will reduce behavioral issues associated with autism. Learn more about the special “autism diet” that Laurita is advocating.
It’s a strict elimination diet (with no “cheat days”).
The GFCF diet removes two proteins: casein, which is found in all milk and dairy products, and gluten, which is contained in wheat, barley, rye, and some brands of oats [that may have been cross-contaminated with gluten]. The obvious culprits, like milk, cheese, yogurt, ice cream, most breads, cereals, and pasta, should be avoided. But thousands of processed foods contain ingredients made from gluten or casein, so staples such as hot dogs, lunch meat, bottled salad dressings, jarred sauces, and even some margarine may not be allowed. Examining labels and ingredients is a must, especially since some substitute-dairy products may actually contain casein. For the GFCF diet to have a chance of working, the proteins need to be gone for good. In one study, kids who strayed from the diet just once every other month showed fewer improvements than those who broke the diet two times or less during a year.
Research is mixed — but promising.
A 2009 research review concluded that there wasn’t enough evidence to support a GFCF diet for autism, but some hopeful findings have emerged since then. In a small Danish study in 2010 of children ages 4 to 11, some kids showed significant improvements after 8, 12, and 24 months on a GFCF diet. Researchers at Penn State surveyed the parents of nearly 400 kids with autism and found evidence that a GFCF diet improved symptoms such as hyperactivity, temper tantrums, problems with eye contact and speech skills, and physical ailments such as skin rashes and seizures for certain groups of children. Those who showed the most improvement either followed the diet closely, stayed on it for at least six months, or had a history of food allergies or digestive issues, like chronic constipation and diarrhea.
No one knows for sure how it helps.
One theory is that children with autism are unable to fully break down casein and gluten and have increased intestinal permeability, or “leaky guts,” so the undigested or partially digested proteins leak through the intestinal walls and into the bloodstream. When they do, the proteins may reach the brain and can lead to problems with behavior, speech, and social skills. Many doctors don’t believe that “leaky gut” syndrome exists. Another theory is that children with autism may simply be in pain and discomfort because of an unknown intolerance to gluten and casein. And yet another is that when those proteins are gone from the diet, kids tend to feel better (and even sleep better), so they’re more alert, get more out of therapies, and make greater progress.
It doesn’t work for everyone.
According to a study by Autism Speaks, nearly half of all kids with autism spectrum disorders suffer some kind of gastrointestinal symptoms. While it’s possible that gluten and casein proteins trigger a body’s immune response, causing inflammation of the GI tract, it’s also possible that food allergies and intolerances aggravate autism symptoms. Experts do not understand why, but the GFCF diet doesn’t help all children with autism. Those who have food allergies or chronic digestive problems seem to get the biggest benefit from the diet.
Getting expert help is key.
Work closely with a health practitioner, such as a registered dietitian, along with a physician who is well versed in GFCF diets. The doctor can assess your child’s current diet, confirm if he needs other nutritional supplements, and help you plan meals and snacks. Gluten and casein are found in many foods that kids eat, so removing these foods can compromise health, nutrition, and growth if the new diet isn’t well planned (especially if your child isn’t receptive to trying new foods). For example, gluten-free breads and cereals aren’t usually fortified with B vitamins, as standard grains are — and eliminating all dairy products means losing important sources of calcium and vitamin D.
It can be difficult at first.
Eliminating gluten and casein means forgoing most processed and restaurant food. Many children with autism are very selective (“picky”) eaters, in part because of sensitivities to certain flavors, smells, and textures of foods. The foods many kids rely on — such as regular crackers, cheese, and yogurt — aren’t allowed on the GFCF plan. Because gluten and casein proteins are thought to have an impact on the brain, children may go through a type of withdrawal when they’re removed. Some parents who have had success with the GFCF diet suggest removing casein first and then gluten a week or two later. Gradually introducing substitute foods (like non-dairy milks that don’t contain casein, or gluten-free pasta) can help too. You can expect to spend more time planning and preparing food, especially when you first begin the diet. You’ll also need to be mindful of cross-contamination with gluten: Avoid sharing serving spoons or using the same cutting boards or toasters. But if your child experiences improvements on a GFCF diet, these extra measures won’t seem like a big deal.
Having patience is important.
Some parents notice improvements quickly, within a matter of days or weeks. But for others, improvements can take months, and some parents may not see any change at all. Although casein clears from the body in just two to three days, it can take four to six months for all traces of gluten to be gone from your child’s system. Plus, if your child has been diagnosed with celiac disease (an inability to digest gluten), it can take months for damaged intestines to heal. So give the diet at least six months before passing judgment.
Success depends on you.
Before starting the diet, figure out what improvements you’re hoping to see. Take a day or two to establish a “baseline” by asking yourself these questions: How many words is your child saying? How frequently does she make eye contact? How many tantrums does she have in a week? Then, over the course of weeks and months on the diet, reassess your child’s development. If you’re not seeing any significant improvements, the diet may not be worth your while.
Children with Autism: The Parents Perspective
Copyright © 2012 Meredith Corporation.
Autism and the Gluten/Casein-Free Diet: When Can We Stop?
“My son has been on the gluten-free casein-free diet for two years. How do I know when to take him off?”
Today’s “Food for Thought?” response is from developmental pediatrician Daniel Coury, medical director of Autism Speaks Autism Treatment Network (AS-ATN). Dr. Coury is also the chief of developmental-behavioral pediatrics at Nationwide Children’s Hospital, in Columbus, Ohio.
Much has been said about the gluten free, casein free (GFCF) diet and its use to help individuals with autism. Many families with children newly identified with autism wonder if it’s something their child should follow, and others who have been following the diet wonder if they should continue to adhere to it. Let’s try to answer these questions.
The GFCF diet was first developed for people with celiac disease, a disorder that involves a severe reaction to gluten in the diet. Gluten is found in wheat products such as bread and other bakery goods but also in a wide variety of other food products. Casein is a protein most associated with dairy products and also has potential to cause severe reactions in certain individuals. When used appropriately, the GFCF diet is safe and can help avoid these severe health problems.
The theory behind its use in autism is that if a person is having GI responses to these products, the resulting inflammation may damage the lining of the intestine and, so, lead to absorption of molecules that are not normally absorbed by healthy intestines. Some evidence suggests that these molecules or the inflammation they cause can interact with the brain in ways that cause problems such as anxiety, mood abnormalities, mental difficulties and perhaps worsen the behavioral symptoms of autism.
That said, while the GFCF diet has been used in the autism community for a couple of decades, there is minimal evidence that it improves autism-related behaviors.
Should you place your child on the GFCF diet in the first place?
If your child has GI problems (diarrhea, constipation) and sensitivity to certain foods that contain gluten or casein, then the GFCF diet is worth considering. Over the past decade, the medical community has improved its understanding of gluten-reactivity in a small but significant portion of the population. Some of these individuals react to gluten even though they don’t have all the classic laboratory signs of celiac disease.
Once you’ve started the diet, if and when should you discontinue?
To answer this question – and it’s an important one – you want a clear idea of what you expect the diet to help. For example, are you hoping to relieve your child’s GI symptoms? Certainly, that is a good thing. So if the diet improves your child’s GI discomfort and his behavior also improves as a consequence, that’s a clear benefit that’s worth maintaining.
So if you embark on a trial of the GFCF diet, I suggest you make a list of the benefits you seek. Ideally, I’d recommend you make this list a week before you start your child (or yourself) on the diet. Then, keep a diary of the discomfort, behaviors or other symptoms of concern to you.
For example, if you hope the diet will improve your son’s diarrhea, it is helpful to know exactly where you are starting. Does he have diarrhea five times a week? Twice a day? It will be good to know these numbers.
Then keep up the diary as your child starts the diet. Two weeks later, does he still have diarrhea 10 times a week? You may look at your diary and say “Hmmm. I don’t think this is working.”
But you may find that with the diet, your child had diarrhea only once in those two weeks. Then, you’d probably say “Hmmm. This seems to be helping.”
The problem with not establishing a baseline is that parents, and your child’s doctor, are left with vague impressions such as “I don’t know. Maybe it’s working. He seems to have less diarrhea, but it’s hard to tell.” This makes it difficult to decide whether to continue with the diet or not. So, take the time and establish that baseline.
Discussions with your doctor
I also strongly urge you to discuss the diet with your child’s doctor. Some doctors are more familiar than others with the GFCF diet’s popularity in the autism community. However, most doctors understand the dietary restrictions involved and how they might interact with a child’s particular health conditions and nutritional needs.
So please work with your doctor and keep her aware of what you’re doing.
In addition, a nutritionist can provide guidance around the GFCF diet. We sometimes encounter families who believe they are providing a GFCF diet, but actually continue to eat foods that contain gluten or casein. It can be tricky, because these proteins can be in some foods you might not suspect.
So presuming, you’ve taken all these steps, let’s circle back to your question: How long should you continue the GFCF diet with your son?
From what we’ve learned with celiac disease, it can take months for the gut to heal with clear improvements in GI symptoms. If your child does not have celiac disease, it may take somewhat less time. So a trial of two to three months should give ample time to see any benefits.
You say you’ve been using the diet for two years. If you haven’t seen clear improvement, then the diet almost certainly isn’t necessary.
Suppose you have seen clear improvement. When should you stop the diet? We can’t answer that with a flat statement.
Some people can go back to a gluten-containing diet without their prior GI problems returning. Others have them return as soon as they start back on the diet.
We can’t predict this, so whether you want to try is a decision to make with input from your child’s healthcare team.
If you do continue with the GFCF diet, I recommend that your child take a daily multivitamin supplement to ensure adequate amounts of recommended vitamins and nutrients. Your doctor or nutritionist should be able to advise you on this matter, as well.
Thank you for your question, and best wishes to you and your family.
Also see these related Autism Speaks news stories, blogs and resources: