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?’ ”
“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.”
“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.”
“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.”
“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.”
“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.”
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