Healing Our Autistic Children

A Medical Plan for Restoring Your Child's Health

Palgrave Macmillan

Contents

WHAT IS AUTISM?

THE SEARCH FOR ACCEPTABLE SOLUTIONS

ANGIE I

The first time I met Angie, in 2004, she was ten years old. She was a bloated little girl, carrying far too much weight on her slender bones, suffering from both a thyroid condition and chronic constipation. Her big brown eyes were rimmed with dark circles of fatigue, and they were opened painfully wide, staring through me as I tried to talk with her. She didn't flit around my office, throw herself on the examination table, and then stomp on the scale on the opposite side of the room, uncontrollably in motion like so many of the kids who come to see me for the first time; Angie knew what was expected of her in a social situation because her mother, Carole, had worked for years to teach her. Angie exercised some self-control, but she had no ability to express herself beyond her most basic needs, no depth of language or real social skills. Because of this dearth of language, her doctors and teachers assumed she was mentally impaired. Angie was a student at a special needs program in a Catholic school; in my office she stimmed by systematically shredding, thread by thread, her plaid school uniform.

But of all the symptoms of autism Angie displayed that day in my office, the one that broke my heart—and that continues to consistently break my heart—was the flat, expressionless look on her face. This was a child for whom the world was such a closed and scary place she could experience very few of its pleasures. She could, in fact, react to little at all in the world around her, except with fear. There was no joy in her eyes.

The psychiatrist Leo Kanner was one of the first physicians to recognize and describe a then-emerging condition: autism. In 1943, Kanner wrote a seminal paper, "Autistic Disturbances of Affective Contact," that, together with the work of Hans Asperger, formed the basis for the modern-day study of autism. In that paper Kanner wrote that one of the five-year-old boys he studied at the time, Donald, seemed "happiest when he was alone ... diving into a shell and living within himself ... oblivious to everything around him." Though the clinical definition of autism continued to evolve and grow over the ensuing decades, Kanner's early observation goes right to the heart of the disease. The inability of an autistic child to willingly engage emotionally—empathetically—with the world around him remains the classic symptom of true autism. These children are so absorbed within the urgent necessity of their own rituals that they are oblivious to the joy of and delight in discovery that most children take for granted. This absence of wonder is a large part of what has long mired autism in a psychiatric diagnosis—it looks as if the child is withdrawn, even absent. But it is also what makes it imperative to treat these children with the wide range of nonpsychiatric techniques now available to help them to heal. It is only a perceived lack of wonder we see on these small, blank faces.

I remember looking at Angie that first day, trying so hard to connect with her, because what I had come to know was that there was every possibility a lively mind was trapped within this child's very sick body, hungering for the words she could use to express herself, aching for relief.

However sorry the shape Angie was in that first day I met her, her mother assured me I was not seeing the worst of it. A few months before, Angie's symptoms had been even more profound. This had been a child for whom visual and auditory sensations were so overwhelmingly painful she'd banged her head repeatedly—brutally—against any hard surface she could find in a pathetic, fearsome attempt to dissipate them. She'd had to wear a helmet to keep from injuring herself. It was alarming behavior, and, as Angie got older, it became even more frightening.

As Angie grew bigger and stronger, her mother was less able to control her and, therefore, less able to protect her. She was more fearful of the harm Angie might inflict upon herself as she became an adult. Angie's doctors and teachers were already hard at work preparing Angie's mother to accept the fact that her daughter would soon have to be institutionalized.

In desperation—the sort of expansive fearlessness that can be provoked only by love—Carole had gone looking for answers she wasn't getting in the doctors' offices. She had done what, a scant year before, I myself might have cautioned her against doing: she got on the Internet and Googled for a ray of hope.

What she found on the Net was information about how a gluten-free, case-in-free (GFCF) diet could help autistic kids recover. Along the way, she also found that various official agencies, such as the Centers for Disease Control (CDC) and the American Academy of Pediatrics (AAP), were adamant that there was no scientific evidence that such a diet would do any good. Elsewhere, at a site she'd believed belonged to an autistic advocacy organization, the Association for Science in Autism Treatment (ASAT), she found outright condescension for the desperate parent who invested hope in such a diet, a treatment ASAT dismissed as "pseudoscience." But Angie's mother felt her back was up against the wall. Any parent would recoil at the thought of losing her or his child to an institution, and with that unacceptable step as the looming alternative, Carole started her daughter on a nutritional regimen that removed all gluten (essentially wheat, oat, rye, and barley) and casein (essentially anything that comes from an udder) from her diet.

The change in Angie was "miraculous," according to the family. The child was still profoundly autistic, but the worst of her self-injurious behavior had ceased. This was proof enough for Carole that there was something to this diet, and she began to seek out a doctor who could explain to her what it was—who would be able to take the healing to another level and recommend other therapies that could offer the child even greater relief. Angie's family's circumstances were modest, and insurance was certainly not going to willingly foot much of the bill for treatments that were not wholly embraced by the existing medical establishment, but no matter. Sacrifices would be made if there was a chance of releasing her child from the grip of autism.

The unconditional willingness to sacrifice for a child's sake is something I witness every day in the parents who come to see me. It is often in assuring me that there is nothing they will not do to have their child returned to them whole that the parents will begin to cry, and at times like these, I often have to check my own tears. This is the best and the worst of my job. I know what the parents of my patients are feeling. I have lived it, and I relive it with every one of them.

DANI I

In August 2003, within days of receiving her booster vaccinations, my fabulous four-year-old daughter, Dani, disappeared before my very eyes. The child left behind in her body was a stranger to us. Our cheerful little princess came to consciousness each morning moaning and crying. Our chatterbox stopped speaking. Our songbird no longer lifted her voice to serenade us with her favorite ditties—"Twinkle, Twinkle Little Star" and "Tigger's Song." Our daddy's girl no longer wanted to pray at bedtime with her father. She had meltdowns, a new phenomenon in our home, for no discernable reason. If she didn't want to do whatever it was that we wanted her to do, she flopped on the floor like a wet noodle. She cared nothing for being with us—I could leave the house, and she did not notice; I could return, and she did not care. This abrupt verbal and social regression was accompanied by what was, in my mind, at the time, the unaccountable: a brutal bowel disorder that distended and swelled her belly and made her look pregnant. And that frequently resulted in orange diarrhea flung on the walls of our home.

Had I not known this child prior to her regression—had I, for instance, been a new teacher in her classroom—I might have decided that Dani was only a sullen, disagreeable little girl. Had I not known the extensive vocabulary and other accelerated skills Dani had possessed just before she got sick, I might have chalked up her inabilities to her being a little "slow." Had I myself not been recuperating from back surgery during just this same period of time—in other words, had I not been a stay-at-home mom who witnessed firsthand every frightening new loss that accompanied my child's regression—I might have blamed Dani's new willfulness on a lack of discipline in the home. Even as I saw new problems surface each day, I buried myself deeply in that delightfully protective defense mechanism: denial. I refused to see what was clearly present in our house. In the end, I made my husband say it first: autism.

The parent in me couldn't admit it, but as a doctor, I have to make diagnoses such as these daily. A doctor's job can, in many ways, be likened to that of a medical detective. For our clues, we rely on observable signs and symptoms—on behaviors, as well as rashes and swelling, fevers, and the like; on verbal accounts of the illness from the patient and the family histories we ask patients to provide in such detail; on laboratory results we order from blood draws, urine samples, and biopsies; and on the results of tests such as MRIs and CT scans. Modern medical science has provided us with a large toolbox to turn to in gathering our clues. When we have our clues in hand, however, we routinely pick up our textbooks for a little old-fashioned reading and research to help us in confirming a diagnosis and instituting effective treatment.

When Dani got sick, and I at last accepted that her sickness was indeed autism, I turned to my textbooks. You see, back then, I was not a specialist in autism; I was a typical pediatrician taking care of mostly well children—treating earaches and sore throats, and performing annual physical exams. In my textbooks I found nothing that would help me learn about autism save one short paragraph discussing autistic features in some chromosomal disorders. I next hunted through medical literature, but I found nothing that told me how to fix my daughter's problem. What I found instead was that the medical community, of which I was myself an active member, officially considered autism a dead-end diagnosis.

That's when I did what any parent would do: I became furious at a world that would write off my formerly bright, cheerful child as hopeless. I did the thing that as a pediatrician I had routinely cautioned my patients' parents not to do: I Googled my child's illness in the hope of finding helpful information that the outlets of established medical science could not provide or were not providing to me.

What I found, when I Googled autism, were the same sorts of things that Angie's mother, Carole, found when she was looking for answers. But for me, these discoveries generated tremendous internal turmoil between my brain and my heart and between my medical career and my motherhood. What I found at my traditional mainstream medical sites was exactly nothing to help my princess. What I found at places such as the Autism Research Institute was in direct conflict with my medical training: autism was not a psychiatric disorder at all, but a physical illness, and in treating it as such there was hope for recovery. There was a coalescing group of researchers and clinicians calling their approach "Defeat Autism Now!" and they were doing exactly that with a scientific approach to the illness as they understood it. The foundation of Dani's treatment would lie in changing her diet, and supplementating her diet with missing ingredients to repair her weakened physical body.

Now, this made sense to me because of what I was seeing at home. Dani's chronic diarrhea was clear evidence that something was wrong with her digestive system. The fact that she was constantly sick with complicated colds and earaches and other "typical" childhood illnesses indicated that her immune system was distressed. Perhaps—just perhaps—in attending to the very real medical problems that had manifested at the same time as her verbal and social regression, her "mental" problems could also be impacted positively. Remember the gut-brain connection we've already talked about as it relates to the consumption of alcohol? I wondered: Was it possible that by cleaning up Dani's system—by removing those elements from her diet that researchers were finding were toxic to autistic kids (gluten and casein) and bolstering those elements (vitamins and minerals) that were lacking—we could actually help her brain to clear too?

So, early in 2003, we set off, as a family, on this journey into the unknown, and we did it with gusto. We dropped everything else, and Dani did too. We emptied the pantry of the products that would offend Dani's system and learned a completely new way to cook. We gave her the most god-awful tasting mixtures of vitamins and minerals and supplements twice daily. We drew blood, gave infusions, and eliminated the yeast in her diet (the impact of which on the digestive system I'll explain in detail later), detoxifying her under the guidance of Jerry Kartzinel, a brilliant clinician who already had broad experience working with the biomedical recovery of autistic kids—and who mentored me as I learned the science.

The process of detoxification was a roller coaster. Our family was anguished when Dani was kicked out of her first school because the symptoms of withdrawal from gluten and casein, no matter that they were transient, were so severe. We watched with pride at her determination to get well; she worked her fanny off day after day, attending seven hours of different therapies over the course of every five workdays—and this after putting in a full day at school. Though her social skills still needed work, and though her body still needed a great deal of support, in a relatively short 18 months she had regained 47 IQ points, was labeled as gifted, and was mainstreamed at her new school.

We were blessed.

And I knew I had found my calling: to help other families experience the same blessing of recovery.

ONE IN SIX

I suspect that I would never have put significant effort into learning how to treat a child with autism if I hadn't been compelled by Dani's illness. That's because biomedical intervention is not a magic bullet. There is no single pill to prescribe, no one shot to give. You've just read a little bit about Dani's story, and it sounded short and sweet, with a neat, happy ending. But read it again. Dani's initial recovery extended over a hard-fought 18 months, and even today, five years later, her body still requires nutritional support, and she still needs help navigating the complex social world of typical preadolescent girls. Learning how to support Dani and manage her illness was required of me as a mother; it was a no-brainer. However, as a physician, learning to manage a complex disease such as autism, long after my training years were behind me, would have been professionally unappealing, and even inefficient. As a primary care pediatrician, it would have made more sense simply to refer a child who presented with autism in my practice to a specialist.

Wouldn't it?

When I started to look for information that would help me to treat Dani, I was astonished that there really was an extensive amount of published literature on what was wrong with her and how to fix it. There is a tremendously talented group of brilliant researchers and experienced clinicians working on solutions.

When Bernie Rimland, PhD, gathered Jon Pangborn, PhD, and Sid Baker, MD, together asking for help to solve the autism problem as he understood it, they set out in search of a few "really smart people" to think about it. Today, those people are much like a family, spanning the globe, located in both private practices and universities. From Martha Herbert, MD, PhD, at Harvard and Dick Deth, PhD, at Northeastern, to Jill James, PhD, at the University of Arkansas, and a host of others around the world, researchers are sharing their findings with incredible clinicians like Anju Usman, MD, Ken Bock, MD, Nancy O'Hara, MD, Stu Freedenfeld, MD, Liz Mumper, MD, and Mary Megson, MD, to name just a few. These clinicians, collaborating with "bench" researchers—those scientists who spend the predominance of their time not with patients but in the lab—are implementing findings in real time, now, in children with autism.

At first, I was surprised and delighted to find such a wealth of resources, but the thrill of discovery quickly turned to disgust and anger: Why hadn't any of this material been covered in medical school? How was it possible that as a young pediatrician, I hadn't been exposed to at least some of this material in the classroom? That's when the horrible truth hit me: I hadn't been taught this material because medical schools weren't teaching it. If this knowledge about biomedical intervention wasn't available in school, where did I think these autism specialists were going to come from? Soon enough, however, I had to put all emotion aside and rehone my skills at acquiring medical knowledge. Gaining a working understanding of how to treat autism was going to be daunting. I knew I wouldn't have the energy to do it if I stayed inside my anger.

I essentially went back to residency all over again. I did it at night in bed, devouring articles and relearning detested biochemistry. I worked up essays, drew diagrams, and found analogies, wending my way through this complex and evolving medicine. Through all this my husband was infinitely patient. The light by my side of the bed burned late into the night; I often talked medicine in my sleep; and when my husband woke up in the mornings, he faced a wife whose eyes were slits and whose usual cheery "Good morning!" was reduced to a groan for a cup of coffee.

The hard work paid off; I am now considered an expert in the world of autism, working with children and mentoring clinicians from all corners of the globe.

But remember what I said about being motivated to become an expert because my daughter needed me to do that? The need is no less urgent for parents who are not physicians, but who still have to care for an autistic child.