Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research and Recovery

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Overview

Unraveling the Mystery of Autism and Pervasive Development Disorder is an essential guide for parents with autistic children who hope to better understand and intervene with the disorder.

When their nineteen-month-old son, Miles, was diagnosed with autism, Karyn Seroussi, a writer, and her husband, a scientist, fought back with the only weapons at their disposal: love and research. Consulting medical papers, surfing the Web, and networking with other parents, they traced the ...

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Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research and Recovery

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Overview

Unraveling the Mystery of Autism and Pervasive Development Disorder is an essential guide for parents with autistic children who hope to better understand and intervene with the disorder.

When their nineteen-month-old son, Miles, was diagnosed with autism, Karyn Seroussi, a writer, and her husband, a scientist, fought back with the only weapons at their disposal: love and research. Consulting medical papers, surfing the Web, and networking with other parents, they traced the onset of their son’s problems to an immune system breakdown. His digestive system was unable to break down certain proteins, which in turn led to abnormal brain development. So Karyn and her husband got to work—Karyn implementing their program at home while her husband tested his theories at the scientific lab where he worked.

Unraveling the Mystery of Autism and Pervasive Developmental Disorder is an inspiring and riveting chronicle of how one couple empowered themselves to challenge the medical establishment that promised no hope—and found ways to help their child.

Here are the explanations and treatments they so carefully researched and discovered, a wealth of crucial tools and hands-on information that offer ideas other parents can use to impact and reverse the effects of autism and PDD, including step-by-step instructions for the removal of dairy and gluten from the diet, special recipes, and an explanation of the roles of the key players in autism research.

"...provides crucial tools & hands-on information that can help parents reverse the effects of autism & PDD, including step-by-step instructions for the removal of dairy & gluten from the diet, effective behavioral therapies, and more."

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Editorial Reviews

Publishers Weekly - Publisher's Weekly
What can be more devastating for parents than to learn that their child is autistic? The severely debilitating neurological disorder, which affects social and language development, can be difficult to treat. When her son was diagnosed with autism at 19 months, Seroussi, a small-business owner and wife of a research chemist, determined to do everything in her power to help her child achieve normal functioning. In addition to pursuing recommended speech and behavior modification therapies for her son, Seroussi devoted her considerable energies--often against medical advice--to researching alternative approaches. Her own experience and a growing body of scientific evidence pointed to connections between autism and diet. And though the theory has not yet been proven, Seroussi says, research now suggests that autism may be an autoimmune disorder triggered in rare cases by an infant's measles-mumps-rubella immunizations. Convinced that the inability to digest certain proteins was contributing to her son's condition and that his autism was related to his reaction to MMR vaccines, Seroussi eliminated suspect foods from his diet; he made such dramatic improvement that, by age four, he was functioning normally. Now a crusader for dietary intervention, Seroussi has written a book that will give hope to many families--though she cautions that not every autistic child responds to such treatment. She includes a FAQ section, gluten- and casein-free recipes and resources, and a list of organizations and readings. Agent, Kathi Paton. (Feb.) FYI: Seroussi is co-founder of ANDI (the Autism Network for Dietary Intervention) and co-editor of the ANDI News. Copyright 1999 Cahners Business Information.
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Product Details

  • ISBN-13: 9781481429443
  • Publisher: Simon & Schuster
  • Publication date: 10/14/2014
  • Pages: 320
  • Sales rank: 673,983
  • Product dimensions: 5.50 (w) x 8.30 (h) x 0.80 (d)

Meet the Author

Karyn Seroussi, a freelance writer, has spoken at conferences around the world, helping other parents understand what is beginning to be known about the nature of, and the treatments for, autism. Her goal is to see parents and professionals working together; to have autism diagnosed early and treated appropriately. You can visit her website at KarynSeroussi.com.

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Read an Excerpt

Unraveling the Mystery of Autism and Pervasive Developmental Disorder


  • “Your book reads like a suspense novel, but it was even more chilling because it’s true, and because it was so eerily similar to our daughter’s story. I literally couldn’t put it down.”

—Bill P. Sykes, Los Angeles

“After the diagnosis (‘D-Day,’ as I call it), I didn’t have the strength to read much about autism. But you have a gift for storytelling that had me on the edge of my seat, and the result of these interventions has been miraculous for my son. Thank goodness for your book—if we had waited for our doctor to tell us what to do, we’d be living with a very different child.”

—Susan Leach, New York

“So many experiences, ideas, and beliefs you shared in your book matched everything I’ve been through in the past few months.”

—Kirsten Martinez, Miami, Florida

“Your beautifully written book is a challenge to the medical community to listen to what their patients are telling them. Your stunning revelations will doubtless change the outcome for countless children claimed by what has become a tragic epidemic.”

—Heather Snyder, Pennsylvania

“A book like this on autism has been long overdue. Now nobody can say he or she didn’t know.”

—A parent in New Jersey

I recently reread my book Unraveling the Mystery of Autism and Pervasive Developmental Disorder with a sense of amazement. It hardly seems possible that I wrote this book at all. Only a parent who is obsessed and overwhelmed by her child’s special needs could create a work like that. I hope I never have a reason to write such a book again!

I am also amazed by the response to this book from the autism community. I have been told it effectively marks a watershed between the old belief that every case of autism is hardwired and incurable, and the new understanding that many cases are biologically treatable. My goal was to help parents feel empowered and be motivated to seek out answers for their children, and I am proud to hear that so many have. Instead of simply imitating my son’s treatment protocol, many parents have become inspired to look further into their own children’s individual biological profiles, and have broken new ground in the investigation of other metabolic and immunological issues leading to autistic disorders.

Luckily, thousands of children besides my son have had a dramatic response to the very treatments I describe. Most gratifying have been the letters I’ve received from parents who discovered these treatments in my book. The old cliché about self-help books is that “if just one person is helped, it’s worthwhile.” When it comes to the gluten- and dairy-free diet, thousands of children have been helped while waiting for medical science to catch up, thanks to the courageous and noble efforts of the many doctors, researchers, and parents who have taken up this cause.

I am often asked how my son is doing—“Is he still okay?” Yes, he is. He is strictly gluten- and dairy-free by choice, after a few accidental and unpleasant slipups over the years. He’s well liked, good-natured, offbeat, philosophical, messy, absentminded: a little bit like his dad, and a little bit like his mom. In high school he got good grades despite an ongoing wrangle with inattention, participated avidly in concert choir and musical theater, and dabbled in writing fantasy fiction. He’s had a couple of girlfriends. He has trouble deciding on a college major. I guess he struggles no more than the average nineteen-year-old.

That so many young people like him have now achieved normal functioning is evidence that, in the early stages of regressive autism, the disorder can be reversible. Miles is not the only child for whom the removal of opiate peptides from the diet led to a complete resolution of the autistic behaviors. Not a “cure,” mind you, because the underlying cause of the disorder is still unknown, and the overlapping subtypes mean that some children may only be helped by the diet, but not recovered by it. Miles still has the disorder that causes autism. Treating it early on must have been a critical factor for him.

But so many doctors are still woefully uninformed about the new theories about autism’s causes and treatments. Many are unwilling even to discuss these simple, safe interventions with their patients’ parents, and often the parents have been made to feel like renegades. Some have even been accused of “child abuse” for doing something as simple as removing cow’s milk from their children’s diets. It is not in a child’s best interest for the parent-doctor partnership of trust and open communication to be weakened.

I wish I could say that medical science has already caught up with our theories, but at least these things are moving ahead, albeit at a slow and steady pace. A revolution takes place only when the old system is proven to be unsatisfactory. For decades, our understanding and treatment of autism have been a terrible source of frustration for parents and professionals alike. Now, one success story after another has convinced a great number of people to stand up and take notice. A true paradigm shift in our global view of autism will take place, but it could take several more years of carefully designed studies and serious investigation before we can understand exactly why the diet and other “alternative” treatments are effective, and for which children they are appropriate.

I would also like to emphasize something very important: treatment for autism has to be multimodal. Foremost, if possible, take away the cause of the disorder and treat the underlying biological problems. There are many reasons why well-meaning parents resist this, including opposition from their doctors, which can be hard to overcome.

I’m sure to rub people the wrong way when I criticize those who won’t try the diet, but right now we just don’t know for certain which autistic kids need to be on it. From my perspective, it is heartbreaking to think of the children like my son, whose autistic behaviors are being caused by these proteins, who are suffering damage at every meal by loving parents unwilling to take the plunge.

•  •  •

One month after the first edition of this book came out, Lisa Lewis phoned me and said, “Karyn, we are getting fourteen hundred e-mails a week, and my fax machine is ringing nonstop. How the heck are we going to handle this? Are we really going to answer all this mail?”

Amazingly, we did. Over the next year we read over sixteen thousand e-mails, and answered every one. Most could not be answered with a form letter, as they were specific to each child. We did this as volunteers, and at times it was exhausting and frustrating. But it was also incredibly rewarding. To hear of the impact of our work on so many families was very powerful, and many times we found ourselves moved to tears by the letters we received.

Here are some typical responses I received from parents who had success with the diet:

“We recently celebrated the four-month anniversary of our son being a casein-free, gluten-free eater, and have noticed some remarkable changes. He is making excellent eye contact, has quite a bit of interest in his brother (where there was none), has made a huge improvement in receptive language, has introduced some verbal language, has improved sleep, less ‘stimming,’ less tantrumming, and is better able to handle public places and outings. He will now give kisses and hugs, and wave and say ‘bye’ (often without prompting!). Although I see such a need for further improvement, he is making progress very quickly. I feel confident that the improvement will continue, and for that I am forever grateful. We invited twenty-three people to our home to celebrate his second birthday. The fact that we were able to do this, and he was able to handle this, is quite remarkable. Before the diet, he would never have been able to handle that many people in our home.”

—Shelli Clarke, Erie, Pennsylvania

“My four-year-old son could not say ‘yes’ or ‘no’ or address me as ‘Mummy’—he had some basic echolalia only. He was very miserable and cried often. Sound sensitivities and gravitational issues were a problem, too. We started the gluten-free, casein-free diet five months ago, and instantly his red ears (which he had had for two years) disappeared. He lost the perpetual gray pallor. His picky eating habits persisted for two weeks, after which he ate everything I put in front of him! The sound and gravity problems are almost gone. He has gained eighteen months’ worth of language in five months. He is so happy now, particularly when he looks me in the eyes and says, ‘I have the prettiest mummy ever.’ His advances are astounding his therapists, considering the late start to intervention. I feel (at last) confident for his future.”

—Lisa Andersen, Australia

“I could shout from the highest mountain—Sam’s progress continues to amaze us. He’s getting closer all the time. This morning he came out of his room and said, ‘Good morning, Mommy, how are you today?’ ”

—Teresa Summers

“He will give us kisses and hugs upon request, will get his shoes when asked, he is starting to point, he shakes his head yes or no, is always wanting to reach out and play with other children, and waits in line patiently. I truly believe if I had not started the diet when I did, I would have lost my son. Thank you.”

—A parent

“In the few short weeks we have been doing the diet he is more social and empathetic. He spontaneously shares with his baby sister. He was so worried about my dad, who fell and hit his head on some cement stairs last week, that he wanted to call and talk to him every day (since now he will actually converse a little on the phone!), and the biggest thing is he is so much better at coping with life’s little disappointments. The tantrums have drastically diminished, almost vanished.”

—Suzanne Dunford

“Around here, the diet is looked upon as something that does not work, and doctors discourage parents from trying. I have living, talking proof that it does work.”

—Jody Goddard, Ellettsville, Indiana

“My son is doing absolutely beautifully. We started the diet just over three months ago, at the end of October, and found out about his other food allergies the day before Thanksgiving. Since then, he has been gluten-free/casein-free as well as off all of the other twelve foods to which he is allergic. He started talking right after Christmas. He is two years and four months old, and his receptive language is now at or above age level. He follows almost all of our directions, and he is so eager to please. He does interlocking puzzles, has learned the alphabet, calls me ‘Mommy,’ plays with his toys (especially his choochoo trains), and has some pretend play. He is starting to put two words together: ‘help me,’ ‘bye Mommy,’ ‘more (whatever).’ His eye contact is getting better and better, and he is noticing other children. His ABA [applied behavior analysis] consultant can’t get over his progress, and tells me each week that he is learning faster than she can believe. She also thinks that at this point he is off the autism spectrum. He still has some perseverations, although they are so minor, and I am always able to get him focused on to something more fun. In fact, he no longer opens and shuts doors, which was his main perseveration. He looks great (no more dark circles under his eyes), and his teachers at our ‘Mommy and Me’ class can’t get over the change in him—he does all of the hand movements to the songs in class and ‘sings’ some of the words to our little songs. We are absolutely amazed by his progress.”

—A parent

“We did not hear about this diet from any of the doctors or educators dealing with our son over the last four years. It wasn’t until we read your story in Parents magazine that I was introduced to this subject. That night I stayed up all night, disposing of my entire kitchen. My husband got up at 5:30 A.M. to take a shower and found me in the middle of piles of boxes to donate to the homeless shelter. He asked what I was doing, and I explained that I was getting rid of all the food, spices, etc., in our house, and I showed him the ‘safe’ food list I had downloaded hours earlier. (I think he thought I had lost it, but with a smile he said it sounded like a great idea.) That was six months ago, and we can’t believe the changes we have seen.”

—Stacey Solar, Belleair, Florida

“We still have a lot of work to do, but we have so much hope. That ‘knife’ in my stomach is gone! The other day we were looking at a video and he leaned his head on mine. Then he turned and looked at me (and I looked at him) and he kissed me gently on the cheek. He didn’t have to say anything at that moment, because I understood exactly what he was thinking.”

—Marie, San Jose, California

Other nonbiological interventions such as special ed schools, speech therapy, and occupational therapy are essential for teaching the social and academic skills the child has missed, or cannot learn in typical ways.

I would also like to make something very clear. There is a great deal of debate about what kind of therapy is “best.” My experience is that a parent must research the treatments and make the decision based on his or her knowledge of the child. Not because it worked well for my child or a friend’s child, not because it’s offered locally, not because it’s cheaper or easier or more convenient. ABA, AIT, Son-Rise, other therapies . . . each has helped certain kids achieve their potential for growth and improvement.

You might hear some generalizations that may be useful. I have heard that ABA works really well for high-functioning kids and diet responders. Conversely, I’ve been told that Son-Rise Program (Option Institute) may be the gentlest, least invasive way of enlisting the cooperation of kids who are highly sensory-defensive and who make gains slowly. Some people say that Greenspan works best in conjunction with other therapies. There are simply no hard-and-fast rules. Trust your instincts. Use whatever makes sense and seems to work. Some programs may not be fully compatible with each other, but elements of each can be used together. My son soared with ABA, but for some kids I knew, the intensity of the program seemed invasive and downright unkind. If, after several months, your child still bursts into tears at the sight of the therapist, you may need to rethink your choices.

Many people ask me whether I believe their child is too old for the diet. If you think about it, what they are really asking is if their child is too old for “recovery.” In severely affected older children, teenagers, and adults, it is probably true that the chance of a totally “normal” life becomes slimmer as the years pass. But when is it too late to try the diet? Never! In people whose autistic behaviors are being caused by these proteins, taking away the trigger foods can yield benefits such as reduced anxiety, reduced discomfort, better sleep, better interpersonal contact, and many more improvements:

“Reading your book changed our world. We have dealt with dozens of specialists and experts over the last decade in the quest for an answer as to what was really wrong with our daughter. She went on the diet last August and she stopped raging three days later. Stephanie is sixteen, but her (and our!) life has changed dramatically—from a 29 percent scholastic average to a stunning 85 percent this past midterm! I think other parents need to know that it is never too late.”

—Tracey Dynes, Canada

Recovery is a funny word, anyway. How many of us have quirky relatives who were never diagnosed with anything, who are not diagnosable as anything but . . . eccentric? How many kids nowadays are “typical”? How many adults are “normal”? Recovery is a “spectrum” in its own right.

The biggest question really isn’t “Will my child recover?” After the bleak prognosis of autism, most parents can be grateful for any progress that might lead their child to be more comfortable, to learn and grow without intense frustration, or to become a functional member of their family.

For many, a recovery from autism might mean that the child can attend regular school without an aide, or will someday be able to live independently. For some, it merely means he is capable of developing satisfying, reciprocal relationships with family members. For others, it would be a blessed relief if their child would simply sleep through the night, or cease his continuous screaming, or stop hurting himself or others. Regardless of the diagnosis, take pride in your child’s achievements as you would any other child’s, and think of the recovery process as a journey, not a destination.

Parents often ask whether to put their whole family on the diet. This depends on the child, and the family. If you have a child who will grab food from others’ plates, raid the fridge, and climb the pantry shelves to “sniff out” gluten, this might be a good plan.

I know of one little girl whose whole family went on the diet because of her ability to sniff out gluten, and she then began licking the backs of stamps and drinking bottles of wheat-based cosmetics! But this is an extreme case of addiction. For most families, it is not necessary to take such precautions.

I have heard however from many folks that when the whole family went on the diet there were unexpected benefits. For example, Dad’s compulsive eating decreased, and he stopped getting “brain fog” after lunch. Meanwhile, Mom was able to stop taking her anxiety medication, and her joint pain all but disappeared; Sis had an easier time paying attention at home and at school, and Little Brother stopped wetting his bed. It is suspected that food allergies, which might result in a range of indistinct symptoms, are common in families with an autistic member, and wheat and milk are common culprits.

Does the gluten- and casein-free diet work for attention deficit disorder (ADD) and other developmental disabilities? Usually not to the degree that we see improvement in some autistic children. However, family members with ADD do often respond noticeably to changes in diet. This is something that we have often heard, and is absolutely worth investigating.

In general, we have heard the most GF/CF success stories associated with children on the autism spectrum. Sometimes these are kids who were not specifically diagnosed with autism or PDD, but have autistic behaviors such as stimming or flapping, or odd social and language skills.

People often want to know how long they need to do the diet. If it is helping, does this mean their child will never eat gluten and casein again? My guess is that for a few kids it may be as simple as allowing time for a “leaky” gut to heal, at which point they might be able to go off the diet.

Some parents have even told me that their child was able to go off the diet after treating an underlying immunological problem, often in the care of doctors or naturopaths using alternative medicine. This is exciting news, and I look forward to hearing further details about such treatments, and more of the long-term results.

However, for many children who have tried to go off the diet after years of success, the reprieve was only temporary, the gut damage recurred, and the behaviors returned in a matter of weeks, often in the form of a more severe psychosis. Perhaps these kids had certain antibodies to gluten, or maybe a pancreatic insufficiency. Autism is a complex disorder, and we just don’t fully understand all of the mechanisms which can lead to these behaviors. I always caution parents of diet responders to stick with the diet until we have more answers. It’s really not that hard once you get started!

A word of caution: some people will claim that if you give your child certain enzyme formulations, he or she can eat gluten and casein with no ill effects. I have heard from hundreds of parents about this, and it does not appear to be true. It would take only a small amount of casomorphin to flood the opiate receptor sites in the brain, and there is no way to believe that an enzyme tablet can fully break down every peptide that is ingested.

However, digestive enzymes may be helpful in the diet for different reasons. Many other proteins and grains can be problematic, especially if overall digestion is impaired. In addition, keeping a bottle on hand for accidental ingestion of gluten or casein seems to alleviate an adverse reaction. Just remember, it is no substitute for the diet. Why give the antidote along with the poison?

I have another serious concern. Since the first printing of my book, I have heard from many hundreds of parents about the vaccination issue:

“My son Douglas was premature but seemed totally normal until May 25, 1993—MMR day! Within a month he was biting other children.”

—Christie Atkins, Rome, Georgia

“My son Benjamin (aged two and a half) is autistic, following an assault on his immune system on November 4, 1998 (aged thirteen and a half months). On this day my normally developing son (who said ‘Mama,’ ‘Dada,’ ‘Sissy,’ pointed to objects, and loved to be held) received his diphtheria-tetanus-pertussis, measles-mumps-rubella, Hib, inactivated polio vaccine, and varicella vaccines. He had pinkeye at the time, and had just recovered from an ear infection/upper respiratory infection. I did not know that day what I know now, about the contents of vaccines, the true statistics regarding the risks, and the true nature of some of these ‘horrible’ diseases I was ‘protecting’ him from.”

—Catherine Bertrand

“My two-year-old son, Joey, was diagnosed with MSDD (multisystem developmental disorder) at twenty-three months. He was developing normally until age fifteen months (when he received the MMR). He was talking, giving kisses, playing with everything . . . and then it stopped. He stopped talking, began hand flapping, and was not playing with any of his toys. He was given the shot in August, and by December he had no interest in Christmas or any of his Christmas presents. He just wanted to flap and self-stim.”

—A parent

The onset of regressive autism in many children coincided with their shots, or with some other immune insult in the first, second, or third year of life. It is my belief that this subtype, once rare, now comprises the majority of cases, and is responsible for the very real increase in the number of young children with autism entering the school systems. The good news is that these kids are usually biologically treatable, and the sooner, the better.

The bad news is that many parents are still not being informed of these treatments until months or years after the diagnosis, and that, despite what our doctors are telling us, we just don’t know for sure whether the shots are responsible for triggering autism in some susceptible children. If, indeed, these cases of autism could be prevented, then an immeasurable tragedy is taking place before our eyes.

“My daughter Emma was an excellent baby. She rarely cried, loved to nurse, and smiled at me often. She developed normally, reaching her milestones on time. She played with toys, and interacted with her older sister and with us. At around twelve months she started speaking. She would ask us for juice, or cheese, or milk, cookies, etc. We would tell her to say ‘please,’ and she would look up at us and smile and say ‘PEESE!’ We were quite happy with her development.

“When Emma had her MMR shot, she had what would be considered a ‘normal’ reaction: low-grade fever and sleepiness. Within a short time, we noticed that Emma did not seem to be speaking anymore. We asked each other, ‘When was the last time you heard Emma say “Barney”? Or “bath”? “Ball”? “Cookie”?’ We sat down one night with paper and pencil and wrote every word we had heard Emma speak—over twenty of them. But all of a sudden she wasn’t using them. She wasn’t even saying ‘Mama’ or ‘Dada.’ We noticed that she seemed not to hear us. She also became extremely constipated.

“She had begun to do ‘funny’ things. She would take cans out of the food cupboards and line them up, and she would do the same thing with cups, blocks, almost anything. She started spending HOURS flipping the pages back and forth in the phone book, catalogs, even the unabridged dictionary. We noticed that when she saw the credits roll by after a video, she would watch the words, standing on her toes, flapping her hands. She spent incredibly long periods of time in activities that were completely bizarre for a child her age, such as lifting the flap on the pet door and letting it drop. She would do this over and over for so long that we would finally have to physically remove her from the activity, only to have her open and close cabinets for another equally long period of time.

“All of a sudden, we couldn’t take Emma anywhere. She would wail and scream and look terrified if we put her in strange surroundings. When she was two and a half, it became obvious that something was just not right. We had tried as best we could to discount her odd behavior, but her distress was getting worse all the time. After a battery of tests, blood work, etc., to rule out other possibilities, Emma was diagnosed with autism in March of 1999. She was nearly three.

“We took Emma to private one-on-one speech and occupational therapy four times a week. We also took her to an additional hour of occupational therapy once a week, and to water/speech therapy once a week. In the fall of 1999, we enrolled her in a special preschool. She was not making progress. She spent most of the time at therapy and school screaming and crying, and was totally uncooperative. Her initial schedule of two days a week at school was too much for her; she was cut back to one day a week, and I had to stay with her the whole time. She could not even sit in a chair, let alone complete a task. In March of 2000 (two months ago), we read your book, cleaned out the cupboards, and started the GF/CF diet within three days.

“Within the last two months, Emma has improved dramatically. Her eye contact is nearly normal. She has done so well at preschool that we now drop her off at the door to the classroom, and she walks right in. We have increased her to four days a week. She no longer stays up until 4 or 5 A.M. She now goes to sleep at eight, and sleeps soundly until seven in the morning. She is no longer constipated.

“We have been able to take her off of imipramine, the antidepressant she started taking when she started hitting her head on the floor. She no longer needs it; she is happier than we have ever seen her. She transitions well, she responds to her name, and last week she said ‘My dad!’ when she saw my husband. Today she played ring-around-the-rosy with her sisters. She held a doll two days ago and pretended to nurse it. Everyone who knows her is in awe of the changes, including her doctor.

“I apologize for the length of this letter, as I know you are busy. You have changed our lives, and for that I will be eternally grateful. I saw absolutely no autistic behaviors in Emma before the MMR. She steadily worsened until we implemented this diet, which has been our greatest blessing.

“Thank you so much! If I can do anything to raise awareness of autism, I will gladly do it. I am more than happy to share my story, especially if it will help someone else. I used to lie awake at night wondering if I would ever hear my daughter say, ‘I love you,’ and if I can spare even one parent that pain, I will have accomplished a miracle.”

—Jaymee R. Dever, Lewiston, Idaho

The above letter is a classic example of the many children, like my son, who regressed and then responded to dietary intervention. Children with regressive autism, insensitivity to pain, GI symptoms, self-limited (“picky”) diets, and sleep problems are almost always diet responders. However, those with none of the above symptoms may also improve on the diet. The only way to know for certain (since urine testing is not terribly accurate) is to try the diet. Do it right, and do it for at least three months. Think you can’t? Think again!

Top 10 Reasons Why People Say They Don’t Want to Try the Diet

10. It sounds too hard.

9. I don’t know how to cook.

8. My doctor doesn’t believe in it (or: I’m a doctor and I know better).

7. His other parent (or teachers, grandparents, etc.) won’t go along with it.

6. We believe behavioral therapy will recover him.

5. I’m afraid it won’t work.

4. I’m afraid it WILL work.

3. I don’t want to take away his favorite foods, because Food = Love.

2. I’m worried about his nutrition—even though he presently eats only Cheerios and Cheez Doodles.

and . . .

1. He’ll starve if I take away milk and wheat.

These last two are the worst reasons of all—many kids with this opiate problem self-limit to these foods, and so are among the most likely to respond to the diet!

If you’ve tried the diet and your child is a diet responder, you have great reason to be hopeful. If your child has a different subtype of autism, it is up to you to look for his or her “magic bullet”—don’t wait for the medical community to do it for you! I believe the answers are out there, and that someday every form of autism will be found to be treatable. But I also believe it is the parents of these children who will lead us to the answers.

—Karyn Seroussi, December 2001

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Table of Contents

Contents

Foreword by Bernard Rimland, Ph.D.

PART ONE: MILES'S STORY: Hunting the Jabberwock

PROLOGUE

ONE The Diagnosis

TWO A Plan of Action

THREE The Importance of the Diet

FOUR Science's Questions, My Answers

FIVE Red Flags

SIX "Trials"

SEVEN Breakthroughs

EIGHT Moving Forward

EPILOGUE

PART TWO: THE DIET

NINE Questions and Answers

TEN First Steps: How to Get Started

ELEVEN Going Gluten-Free

TWELVE So, What Can I Feed My Child?

THIRTEEN Basic Recipes

Appendix A Recommended Reading, Resources, and Organizations

Appendix B Mail Order for Gluten-Free Foods

Index

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First Chapter

Appendix A

Cookbooks
Special Diets for Special Kids, by Lisa S. Lewis
This book is my favorite, and not just because Lisa gave me an acknowledgment in it! My dog-eared copy lives in my kitchen, where it has been spattered with oil, crumbs, honey, and cocoa powder as a testimony to its usefulness. It has the largest compilation of gluten-free, dairy-free recipes ever put together specifically for people on this diet.

The Gluten-Free Gourmet series, by Bette Hagman
The Complete Food Allergy Cookbook, by Marilyn Gioannini
Raising Your Child Without Milk, by Jane Zukin
The Yeast Connection Cookbook, by William Crook

Recommended Reading
Autism Treatment Guide, by Elizabeth K. Gerlach (see page 220)
Detecting Your Hidden Allergies, by William Crook
Is This Your Child? by Doris Rapp
The Four Pillars of Healing, by Leo Galland
Let Me Hear Your Voice, by Catherine Maurice
Digestive Wellness, by Elizabeth Lipski

Resources
Autism Network for Dietary Intervention
P.O. Box 17711
Rochester, NY 14617-0711
Fax: 609-737-8453
E-mail: AutismNDI@aol.com
Web site: www.AutismNDI.com

Founded by Lisa S. Lewis and Karyn Seroussi to provide support for families using dietary intervention in the treatment of autism and related disorders. The ANDI News is a quarterly newsletter containing recipes, research updates, and articles by parents and physicians. Cost of a calendar-year subscription is $20 U.S., $26International.

Celiac Sprue Association (CSA/USA)
P.O. Box 31700
Omaha, NE 68131-0700
Tel: 402-558-0600
Fax: 402-558-1347

CSA provides information and referral services for persons with celiac disease and dermatitis herpetiformis (a skin condition caused by gluten intolerance) and has published a series of low-cost brochures on gluten-free commercial foods and related topics. Their annual fall conference provides opportunities to present current information and research of celiac sprue and an exchange of approaches to coping with the gluten-free diet. CSA has an annual promotion during October, which is Celiac Sprue month, and one-day regional conferences during March.

CSA publishes a quarterly newsletter, Lifeline, at a subscription cost of $20 a year, that has many recipes for gluten-free foods, order forms for special products, and chapter and resource unit contacts. Send $8 for their comprehensive shopping guide of gluten-free foods.

Celiac Disease Foundation (CDF)
13251 Ventura Boulevard, Suite 3
Studio City, CA 91604-1838
Tel: 818-990-2354
Fax: 818-990-2379

The mission of the Celiac Disease Foundation is to provide services and support to persons with celiac disease and dermatitis herpetiformis, through programs of awareness, education, advocacy, and research. They distribute reliable up-to-date information about CD/DH and the gluten-free diet, seek to increase awareness of the condition among all health-care professionals, food and drug manufacturers, the food service industry, the media, and the public.

The Celiac Disease Foundation has local chapters and will assist persons who wish to start a support group in their area. They provide parent-to-parent matching through a group called Raising Our Celiac Kids (ROCK). They publish a quarterly newsletter, CDF Newsletter, that is included in membership fees, along with a brochure, Celiac Disease. They also have a bibliography of books and articles that are available to members including Guidelines for a Gluten-Free Lifestyle, Against the Grain: The Slightly Eccentric Guide to Living Well Without Gluten or Wheat, and The Gluten-Free Gourmet. They also have videotapes. Call or write for order forms and further information.

The foundation collects information on physicians and researchers who treat or study the condition and provide this information to their membership. They will provide information and referrals to other resources.

Celiac/Coeliac Wheat- and Gluten-Free Internet List
A listserv is simply a large e-mail discussion group, with all outgoing e-mail being sent to all members at once. It is a free service for Internet users. This is how I first got started as a gluten-free cook. The celiac list is a wonderful resource and the best way to get answers and opinions fast. If you find that corresponding on the list is taking up too much of your time, you can unsubscribe, or set your subscription to no mail until you are able to return. Although it is really a list for people with celiac disease, many parents of autistic children can be found there.

To subscribe, send a message to: listserv@maelstrom.stjohns.edu
In the body of the message type: Subscribe CELIAC Your Name
You will receive a letter explaining how to use the list.

St. John's also hosts a very large autism list, which includes several parents using diet and biological intervention.

To subscribe, send a message to: listserv@maelstrom.stjohns.edu
In the body of the message type: Subscribe AUTISM Your Name
You will receive a letter explaining how to use the list.

ARI (Autism Research Institute)
4182 Adams Avenue
San Diego, CA 92116

The ARI, founded and directed by Bernard Rimland, Ph.D., functions primarily to educate and support families of children with autism about current research, and about the various therapies available, including "alternative" therapies. For a small copying fee, they will send you packets of information on a variety of interventions. I highly recommend their quarterly newsletter, The Autism Research Review International, which reviews biomedical and educational research in the field of autism and related disorders. To subscribe in the United States, send $18; international subscriptions are $20 in U.S. funds.

You can write to the ARI for information on registration for the annual DAN! Conference. To order the DAN! Protocol, a physicians' biomedical diagnostics manual, send $25.

CAN (Cure Autism Now)
5225 Wilshire Boulevard, Suite 226
Los Angeles, CA 90036
Tel: 323-549-0500
E-mail: CAN@primenet.com
Web site: www.canfoundation.org

You may request a "parent pack," which includes the CAN Consensus Statement.

Marianne Toedtman, AGRE Family Recruiter
Tel: 888-AUTISM-2
E-mail: familyAGRE@aol.com
The Feingold Association of the United States
127 East Main Street, Suite 106
Riverhead, NY 11901
Tel: 516-369-9340

The Feingold Association of the United States is a nonprofit organization whose purposes are to support members in the implementation of the Feingold Program and to generate public awareness of the potential role of food and synthetic additives in the treatment of learning, behavior, and health problems. The program is based on a diet eliminating synthetic colors, synthetic flavors, and the preservatives BHA, BHT, and TBHQ. They have recently added a special section to their program introducing members to the gluten- and casein-free diet.

Developmental Delay Resources
4401 East West Highway
Suite 207
Bethesda, MD 20814
Tel: 301-652-2263
Web site: www.devdelay.org

The DDR is a not-for-profit organization whose mission is to educate parents and professionals supporting children with developmental delays about healthy options for treating the whole child. They publish a quarterly newsletter called New Developments, which includes articles about therapies, conferences, and nutrition, with lists of helpful organizations and mail-order for books.

The Great Plains Laboratory
9335 West 75th Street
Overland Park, KS 66204
Tel: 913-341-8949
Fax: 913-341-6207

Call for a urine collection kit if you are interested in testing for fungal metabolites -- the waste products of gastrointestinal yeast -- or to order a copy of Biological Treatments for Autism & PDD.

The National Vaccine Information Center (NVIC)
512 West Maple Avenue, Suite 206
Vienna, VA 22180
Tel: 703-938-DPT3
800-909-SHOT
Fax: 703-938-5768
E-mail: info@909shot.com
Web site: www.909shot.com

The National Vaccine Information Center is a national, nonprofit educational organization founded in 1982. It is the oldest and largest national organization advocating reformation of the mass vaccination system and is responsible for launching the vaccine safety movement in America in the early 1980s. Located in Vienna, Virginia, NVIC is dedicated to the prevention of vaccine injuries and deaths through public education. NVIC provides assistance to parents whose children have suffered vaccine reactions; promotes research to evaluate vaccine safety and effectiveness as well as to identify factors which place individuals at high risk for suffering vaccine reactions; and monitors vaccine research, development, policymaking and legislation. NVIC supports the right of citizens to exercise informed consent and make educated, independent vaccination decisions for themselves and their children.

Web Sites

  • GF/CF Kids (Includes new listserv for parents using the diet for the treatment of autism): www.gfcfdiet.com
  • Dr. Sidney Baker's new web site: www.sbakermd.com
  • William G. Crook, M.D.: www.yeastconnection.com
  • University of Pittsburgh Medical Center's Center for Complementary Medicine -- Forum on Alternative and Innovative Therapies for Children with Developmental Disorders and Brain Injury: www.healing-arts.org/children
  • Dr. Jeff Bradstreet ("the Good News Doctor"): www.gnd.org
  • Paul Shattock at the University of Sunderland: osiris.
  • sunderland.ac.uk/autism/treat.html
  • Grain-free, dairy-free recipes: www.PaleoFood.com
  • Autism-FBI (Fighting Back with Dietary Intervention Listserver) -- This list is for intermediate and advanced GF, CF, yeast-free dieters: www.onelist.com/subscribe.cgi/Autism-FBI
  • Net articles of Dr. Kalle Reichelt, Pediatric Research Institute, Oslo, Norway: www.panix.com/~donwiss/reichelt.html
  • Tampere University in Finland's abnormal findings of peptides in urine samples: www.sci.fi/~biopteri/e-index.html
  • Interview with Donna Williams -- Did the Wrong Diet Make This Woman Autistic?: www.jaymuggs.demon.co.uk/donna. htm
  • Travel Tips -- helpful in locating gluten-free food while traveling: www.idsl.net/celiac/travel/index.htm
  • Articles and other links to gluten-free diet information: www.GFlinks.com
  • ADHD and milk (lots of links): www.nowheat.com/grfx/nomilk/index.htm
  • Future Horizons -- Books about autism: www.futurehorizons-autism.com
  • Stephen M. Edelson -- Center for the Study of Autism (Oregon): www.autism.com
  • Can autism be detected at 18 months? The needle, the haystack, and the CHAT: php.iupui.edu/~rallen/chat.html
  • The CHAT test: php.iupui.edu/~rallen/thechat.html
  • The Autism Autoimmunity Project: www.gti.net/truegrit
  • The Progress in Medicine Foundation is a nonprofit organization supporting medical research and physicians using nonmainstream research-based medicine. You can get updates on Dr. Sinaiko's appeal at their web site: www.treatmentchoice.com

Copyright © 2000 by Karyn Seroussi

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Customer Reviews

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Sort by: Showing all of 11 Customer Reviews
  • Anonymous

    Posted October 26, 2004

    Excellent & Informative Book

    This book was excellent. I couldn't put it down until I read the entire story. As an occupational therapist, it is interesting to see how the diet is so important in managing and curing?? autism. What an amazing journey this family made towards getting their son out of the cloud of autism.

    1 out of 1 people found this review helpful.

    Was this review helpful? Yes  No   Report this review
  • Posted March 22, 2013

    This book I give credit to significantly improving the life of y

    This book I give credit to significantly improving the life of your autistic child and your entire family. The information in the book wasnt 100% for me, but I would recommend this book to 100% people who are looking to take their first step into treatment of their child.

    Was this review helpful? Yes  No   Report this review
  • Anonymous

    Posted January 7, 2008

    Encouraging

    This book is a great source for all kinds on information on autism. It provides hope for parents that get an early diagnosis and are willing to work hard.

    Was this review helpful? Yes  No   Report this review
  • Anonymous

    Posted May 25, 2007

    A reviewer

    I was given this book by a friend that has an autistic child and when I suspected my children having the condition. I found this book to be like a mothers diary. I also found it to have a liberal approach. Talks alot about how diet and vaccines contribute to her sons autism which is under speculation. I have read better books that are more helpful.

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  • Anonymous

    Posted March 12, 2005

    more like a mothers diary

    i found this to be more like a mothers diary and not very helpfull. my son is add/pdd with transitional ticks. i did however like the diet info and found it encourging to cry with her knowledge we are not alone and can with early intervention help our children make autism direct them in a field of work and success.

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  • Anonymous

    Posted October 29, 2000

    Thank you God and Karen Seroussi

    I frantically rushed to the library the day after hearing that my son was diagnosed with Autism and was frustrated that this was the only book on the subject. I read the entire book that night after putting my son to bed. I now thank God for insisting that I read this book by default and I thank Karen for giving me something difficult to muster...HOPE! I'm in my 3rd day of finding out about my son's disorder and since the IFEP is not yet written, this book gave me an opportunity to actually do something...the diet. I hope and pray that it works. Parents with Autistic children or other PDD's MUST read this book as soon as possible!

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  • Anonymous

    Posted August 14, 2000

    a must read for anyone connected to someone with an autistic child

    This is the best book I have read on the subject of autism treatments. I couldn't put it down.

    Was this review helpful? Yes  No   Report this review
  • Anonymous

    Posted July 31, 2000

    Searching for answers? Start with this book!

    I am the father of a six year old with autism. Karyn Seroussi has done my daughter a great service by telling the story of her son's struggle with this disorder. I stayed up late many nights reading this book, and can only say it was well worth the effort. My daughter improved in unmistakable ways after we removed casein and gluten from her diet. Karyn gives names, addresses, phone numbers, and urls, as well as a very helpful FAQ section. Anyone who is trying to come to grips with autism simply must read this book. It could change their life for the better. Thank you, Karyn, for helping our daughter. We owe you more than we could ever repay.

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  • Anonymous

    Posted March 9, 2000

    A first-hand account with first-rate advice!

    Karyn Seroussi's book brings a powerful message to parents of children with autism: you can take control of your child's health through dietary intervention. When our son was diagnosed with autism we were told, 'don't be too optimistic.' Like Karyn, we searched for answers-- and diet has been one of the keys to our son's success.I am thrilled to recommend this book to other parents searching for ways to tame this mysterious illness. Karyn's straightforward approach makes difficult concepts easy to understand. Books like Karyn's will empower parents to not only ask new questions about autism, but to demand better answers.

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  • Anonymous

    Posted February 22, 2000

    A Vitally Important Book

    Professionals and parents should put aside whatever they are currently reading and devote a couple of nights to reading this compelling, page-turner of a book. As the mother of a 5 y.o recovering from autism, I have read over 20 books with 'autism' in the title or the description, in addition to many books on health and healing. Though several have been valuable, none compare to Seroussi's vitally important book. It is the first book I've encountered that gets to the heart of autism's etiology and its most crucial treatment--dietary intervention. Without question, I believe this book will one day be cited for single-handedly changing the course of autism.

    0 out of 1 people found this review helpful.

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  • Anonymous

    Posted February 5, 2000

    awesome-NO AWESOME!!!

    Karyn has indeed felt the pain, and unlike somepeople who lay down fought against the mainstream medical community to cleanse the fog separating her son from her. Before reading her book I had been following Dr. Rimland's great research(THANKS DR. RIMLAND and to DR. TAYLOR for helping implement DR. Rimland's procedure) but Kayrn and her husband Alan attended to her son with ferocity that only a parent can give an account of. Again great book Ms. Seroussi and give Miles a hug for all of us.

    Was this review helpful? Yes  No   Report this review
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