I made a decision and I know that was how it had to be, and I did not blame anyone.
—Czeslaw Milosz, “Yokimura”
In the first years after our son’s diagnosis, we attend only one autism conference. We’re not registered and don’t join any sessions. My wife Maura and I come to meet with a well known physician who is speaking at the event. We leave our son, Colin, and his brother, Quinn, with a baby sitter, thinking we will only be consulting with the doctor. On arrival we learn the doctor must “see” Colin in order to continue treating him from out of state. So we reschedule our consultation for later that afternoon. My wife goes to retrieve the kids and I find myself alone at the conference with an hour to kill. The conference people kindly allow me to wander in the exhibit hall at no charge.
Dozens of exhibitors—selling everything from gluten-free cookies to portable hyperbaric oxygen chambers—crowd three connected rooms. It’s a homegrown menagerie of folding tables, borrowed hotel easels and cardboard posters. A few exhibitors display technical solutions on laptop computers. Venders with polarized views give their pitches in hushed tones and with many sideways glances. I soon gather an armful of Xeroxed case studies and brochures produced on Inkjet printers in someone’s basement. It’s excruciatingly clear that the Big Boys, the healthcare players with deep pockets are nowhere to be seen. This is a grass roots business, entrepreneurism, more like a high school science fair or flea market than an international conference on a neurological/biomedical condition that afflicts millions. Why this begins to enrage me is more a matter of my own pride and fear than anything else. I don’t know how to distinguish the truth from the nonsense. Speculation bites me as hard as proven fact in this clamor of voices.
I wander from table to table, listening with effort to the conflicting explanations. Some insist endoscopy is essential to resolve gastrointestinal problems, while others just as passionately argue endoscopy is invasive and unnecessary. Some taut gluten-free and casein-free diets, while others suggest the diets may cause health complications of their own. There is neurofeedback therapy coupled with quantitative electroencephalogram (QEEG) as a diagnostic tool and a way to map the brain. Music therapy, wireless enteroscropy, lab testing of urinary porphyrins as markers for heavy metal toxicity, chelation to force the body to excrete toxic metals, treatments with digestive enzymes, low oxalate diets, nasal Methyl-B12 therapies, sensitivity reduction techniques, N-Acetylcysteine to reduce irritability, Oxytocin to improve emotion and social recognition, Mozart, therapy with dogs and with horses, MRI tests, EEGs to diagnose autism in infants, massage therapy, Vitamin B6, melatonin, antibiotics, probiotics, Risperidal, Prozac, Ritalin, video games and robots to teach social skills. Two women walking behind me at the exhibits talk about cure through exorcism.
What I have been reading or hearing about autism for months mixes with the chaos around me.
What causes autism? What are the supposed links? Mercury-based preservatives in childhood vaccines, strep throat, cow’s milk, over-the-counter drugs, asthma, closely spaced pregnancies, pre-term births, breech births, being first born, chemicals in drinking water, ear infections, mitochondrial dysfunction and other metabolic syndromes, the measles-mumps-rubella (MMR) vaccine, air pollution, prolonged mercury exposure from dental fillings, testosterone in the womb, gene mutation, living near a freeway, nicotine exposure, cell phones, plastics in food, pesticides, a father’s age, a mother’s age, bacteria in the gut, Fragile X protein loss, household cleaner ingredients, not breastfeeding, lack of vitamin D, decreased blood flow to the cerebral cortex, the mother’s anti-bodies.
What should we watch for? Epileptic seizures, immune dysregulation, attention deficit disorder, obsessive interests and repetitive—sometimes destructive—behaviors, food allergies, paralysis, migraine headaches, irritable bowel syndrome, echolalia, mental retardation, dyslexia, failures in the neural circuitry of the developing brain. Suddenly biologists, neurologists, physiologists, sociologists, and gastroenterologists all have something to tell you. You’re a student of molecular psychiatry. It’s suddenly essential to know about the latest discoveries in genetics. You wake one day to find enemies that have lurked in the shadows for years, even all your life, invisible, now leering at you—mere specters no more. Controversies brewing for a decade are front page news to you: lawsuits against drug manufacturers, state lawmakers and litigating individuals fighting for insurance coverage for autism treatments. Perhaps most perplexing of all are the abstract threats, the ever-expanding list of suspects. Suddenly you’re afraid of brain proteins or genes with names like srGAP2 or FXRI or contactin-associated protein-like 2 or CNTNAP2 (like the names of stars or galaxies)—these suspects that may or may not be implicated in the crime of autism.
What are we dealing with here? Children diagnosed with autism at the rate of three an hour, 67 a day. Not a single neurological disorder, but a spectrum of disorders encompassing a broad range of behavior and cognitive disability. This lifelong condition interferes with a child’s ability to communicate or even relate to other people at all. Autistic kids can’t metabolize or excrete environmental toxins like neurotypical children. The autistic face crippling distraction from competing stimuli, struggle to focus on a single task, and in severe cases hit themselves or rock incessantly to express the turmoil inside them. Autistic children wander into city traffic, light fires and have to be institutionalized, flap their hands and whirl around for hours. There are autistic children who never speak an intelligible word. Children left on school buses, bullied at school, abused by police, falsely accused, harmfully restrained and secluded. Children murdered. Parents murdered. Headlines in autism newsletters cycle through these scenarios, variations on themes of victimization and helplessness: Autistic child voted out of kindergarten by classmates. Autistic man charged in attack. Autistic children wrenched from home. Care worker steals from autistic woman. Autistic man accused of biting FBI agents. Autistic student bitten by substitute teacher. Autistic child drowned in Oklahoma. Autistic child abused in group home by workers. Autistic man jailed. Missing autistic child found 100 miles from home.
Journalist Rebecca Solnit says “to populate the unknown with projections, is very different from knowing that you don’t [know] . . . Worry is a way to pretend that you have knowledge or control over what you don’t—and it surprises me, even in myself, how much we prefer ugly scenarios to the pure unknown.” I can see myself so clearly in these words. It is easier to worry and blame than to wait calmly with my son while he works through a tantrum or inexplicable panic.
At the conference, controversy rages around about the safety of the measles-mumps-rubella (MMR) vaccine and especially around the mercury-based preservative Thimerosal used in many vaccines. The most adamant suggest even getting a flu shot during pregnancy brings risk for fetal death, miscarriage, mental retardation, and gross motor impairment. Other voices claim mothers and unborn children are far more at risk if not protected from the flu and other diseases: “If we don’t vaccinate, childhood diseases will come back.” “The anti-vaccine movement threatens us all.” One loaded Thimerosal description reads: “Thimerosal, used as a preservative in vaccines without the required proofs of safety, is half mercury by weight and a known bio-accumulative human poison, neurotoxin, carcinogen, mutagen, teratogen and immune-system disruptor.” The accusations fly: Vaccine manufacturers or health officials are masking an epidemic, creating panic about measles mortalities or risks of the flu to sell vaccines. Or are the ones calling the vaccines into question the real villains by creating doubt and panic, low vaccination rates, and the re-emergence of childhood diseases like whooping cough and measles, a possible flu pandemic?
One vocal conference attendee says there’s more autism among the wealthy and quotes a state legislator who describes these disabled kids as God’s punishment: “Whatever is wrong will eventually affect us all. These autistic children are canaries in the coal mine. A sign of what’s coming!” Echoes still ring of Bruno Bettelheim’s misbegotten theory that the mothers of autistic children—the so called ‘refrigerator mothers’—are to blame. Many theories of cause point to a combination of genetics and environmental triggers. One brochure says, “The genes load the gun, but the environment pulls the trigger.”
My rage, barely suppressed, has me by the throat. I stop asking questions and step from one table to the next listening, more often only pretending to listen. Who are these people? Look at them competing against each other for our pennies and our trust. Look at them pressuring us to decide between them. Look at this three-ring circus. But who am I to cast doubt or to judge anyone? Some vendors have autistic children of their own. Some of these people could be evangelizing an actual cure or miracle treatment. I only know they can’t all be right. The elephant in the room is that we don’t know the cause or what to do, and may never know.
In the third exhibitor room, a large display of hyperbaric oxygen chambers literally takes my breath away. They’re putting children in small pressurized chambers, as if the kids have surfaced too quickly from a deep-sea dive. I can see the faces of children looking out through tiny windows. It’s not that any of the children cry or look afraid. I’m the one in trouble. Feeling the blood drain from my head, I turn on a dime and walk out of the room.
Being outside doesn’t free me from the effect of what I have just seen and heard. I pace the hotel parking lot, watching for Maura to arrive with the boys. I turn the finger of blame on myself and brood over the details of my son’s birth and early infancy. How did this happen? Did we cause it? Our age, our years of birth control, eating sushi during the pregnancy, chemicals my wife used to clean the shower tile, RhoGAM shots to protect the baby from our conflicting blood types, meconium in the amniotic fluid during the last minutes of labor, the fact that our son didn’t cry at the moment of birth, Hepatitis shots within hours of birth, the months of colic, his blank staring (looking through us), chronic diarrhea, a dozen ear infections before we put the tubes in, dust from a thousand books, and on it goes.
I was forty-three when my son with autism—my oldest son—was born. Soon after his diagnosis I read: “Firstborn children of older parents have three times as much chance of being diagnosed with autism than later-born children of younger parents.” The authors of the article admit they can only speculate about why the risk is higher for older parents, but of course they do: Perhaps the overprotective older parents expose their children to fewer infections, making them more likely to develop autoimmune disease. Perhaps the trend for people to marry later and have children later may in part account for dramatic increase in the incidence of autism. Perhaps, the authors suggest, “the sperm of older fathers could be more likely to pass on genetic mutations, while older mothers might be more susceptible to chromosome alterations [italics added].” Another study says the risk is overstated: the pooling of data over a longer period can make it look like there’s a relationship between older dads and autism that may not exist at all. With yet another study, the question arises again.
Women with one autistic child, another article tells us, are at least ten times more likely to have another autistic child. My wife’s gynecologist emphatically denies this as nonsense. Yet within days I meet the young parents of an autistic child who have taken unified action—vasectomy and tubal ligation: “We did our research; it’s just not worth the risk.”
I grew up in Oregon, my wife in Pittsburgh. It rains a lot in both cities, of course. So look out! One university research project maps a strong association between precipitation and the autism diagnosis rate. The lack of Vitamin D, perhaps, too much time inside, too much time in front of the TV—more triggers for autism. Don’t forget the rain carries toxic chemicals from the atmosphere to the ground: emissions from automobiles, manufacturing plants, and domestic waste incineration. Down it comes with the rain to poison the food supply. All this may be perfectly true, but to dwell on it as a means to fix blame is toxic in itself.
Is this human nature to blame or hunger for a cause—a smoking gun, an environmental menace, a negligent pediatrician, or better yet, a guilty institution? When more than likely the cause—or the causes—will inevitably be multifaceted, varied, unpredictable, even indecipherable, one cause masking another.
Steven Johnson, in his book The Ghost Map, studies the cholera epidemic in London in the summer of 1854. Hundreds died before they set aside their theories about the overbearing stench of human waste in the crowded city and focused on the real cause—the purity of the water supply. The miasma theory, the idea that cholera and other disease spread by air, blinded the best scientists of the time to the real cause. The theory had a compelling superstitious hold on the minds and imagination of 19th Century Londoners. They ignored mounting evidence that cholera spread via drinking water. Their efforts to clean up the stench often had the effect of poisoning the water. More people died. They were on the wrong track. What Johnson says about the cholera epidemics could be said about many discoveries of cures and mysteries at last revealed. Johnson says, “The history of knowledge conventionally focuses on breakthrough ideas and conceptual leaps. But the blind spots on the map, the dark continents of error and prejudice, carry their own mystery as well. How could so many intelligent people be so grievously wrong for such an extended period of time? How could they ignore so much overwhelming evidence that contradicted their most basic theories? These questions, too, deserve their own discipline—the sociology of error.” Could the same be true for the search for the causes and cures of autism?
In Kurt Vonnegut’s novel, Slaughterhouse-Five, a fictional author, Kilgore Trout, pens a book called Maniacs in the Fourth Dimension: “It was about people whose mental diseases were all in the fourth dimension, and three-dimensional earthling doctors couldn’t see those causes at all, or even imagine them.” Do the autistics live in such a fourth dimension while the rest of us, trapped in the three-dimensional world, can’t begin to understand them?
When and from where will the great breakthrough come? And how many years will it be? Will it be too late for me? Should I even think about it if I don’t know? A person faced with any serious medical diagnosis faces these questions.
The promise of cure threatens at the same moment it offers hope. The words “cure” and “recovery” soon become so suspect to me that when I encounter the words, I put the book down. I turn off the TV. What should give me hope actually causes me to lose the hope I have. Parents speak of “recovering their children from autism” as if they have been kidnapped or captured by a malevolent force, up ducted by aliens. Yes, it can feel just this way. Of course we should all want cure? Shouldn’t we? And yet.
In the fall of 2005, a five-year old boy died while receiving intravenous chelation therapy to eliminate toxic, heavy metals from his body. A medication called ethylene diamine tetracetic acid (EDTA), which is often used as an effective treatment for lead poisoning, proved lethal to this boy. Many autism specialists push hard for chelation. We don’t do it, but we’re not sure we’re right about it.
A discipline called cortical cartography maps the complex landscape of the cerebral cortex with its intricate folded layers that are as unique to each individual as fingerprints. Secrets, endless and near impossible to predict, are hidden in this landscape—the secrets of the wiring of the brain. Researchers of the cerebral cortex uncover new insights almost daily—insights into how the brain works, and what happens when things go wrong. But we can we put this knowledge into practice? Will it be too late for my child?
How can I describe the peculiar joy of falling in love with a child caught in autism’s web? You come to love everything about them, the repetitive chattering and detachment as well as their guileless embrace of the world. I am as in love with my son as I’ve ever been with another human being—with him just as he is. What are we to make of it? If your child’s autism could be cured at the drop of a hat, would you do it? My son would cease to be one boy and become another. It would be like a death. And yet if he could be cured, wouldn’t that be what he wants? Wouldn’t it be the right thing to do? We have no real understanding of the mysterious forces at work in autism or the gifts it brings with it. We don’t know what he would be giving up. There are few questions more difficult than these. An antagonist may tell me I’m talking nonsense, and she may be right: “It’s like saying you don’t want to give up the cancer or the rape or the war experience because these catastrophes shape us into who we are.” Yes. That is what I’m asking and I don’t pretend to understand it. There are so many paths, so many destinies, all mixed with good and bad. How can we ever know enough to choose?
It’s a matter of survival to strike a balance between passive acceptance and vigilant striving for improvements. Somewhere between burying your head in the sand and running mad off a cliff. I know I can only speak for myself. It’s all anyone can do. Yet I have met many parents who express this same dilemma: you’re pushing for change, even a cure, but you love the child as they are. It comes back again and again to what Epictetus said in The Art of Living: “Things and people are not what we wish them to be, nor what they seem to be. They are what they are.”
While we struggle with tantrums and insomnia, other parents lose children to cancer, or to terrorist bombs and U.S. missiles. Children are kidnapped, abused, run over by cars, drowned in rivers. They disappear into the woods or into cities. As in all things, there is always something worse, but all that seems to matter is where you are.
In the end you come back to the mystery. For many of the named causes of autism there are no reliable biomarkers or a distinct pathogenesis. A sampling from stories about autism published in the last few months is not markedly different from a similar sample five years ago. The child psychiatrist who diagnosed our son openly admits the ongoing mystery: “The best you can do is take an eclectic approach. The only thing I can tell you for sure is that you need to take action.” And so, in our own way, with no more certainty than anyone else, we did just that.