The Horse Boy Read online

  • Repetitive movements with objects

  • Lack of appropriate eye gaze

  • Lack of response to name

  • Unusual prosody (rhythm and intonation of language)

  • Repetitive movements or posturing of the body

  • Loss of words or other skills

  • Babbling instead of talking

  • No meaningful two-word sentences by twenty-four months that are unscripted

  Rowan had good eye contact. Apart from that, he had every single sign.

  2

  Into the Inferno

  WE HAD A SPECIAL-NEEDS KID. We had become one of those families.Kristin went into overdrive, drawing on her psychology-professor credentials to fast-track her way through the maze of Web information, then as now the main source of help for most autism families. Much of the information was conflicting, and piecing together the complex mosaic of things we’d need to get Rowan officially diagnosed and therefore eligible for whatever meager state benefits could be found turned out to involve a nightmare of red tape. We’d need two independent assessments from two different child psychologists, another from a neurologist, and a fourth from the school district’s special-education coordinator. All of which would have to be paid for by our insurance, which in and of itself was going to involve — as Kristin found out after the first tentative phone call — any amount of jousting to negotiate. Not that the insurance would pay for any actual therapies. That was up to us. But what therapies, exactly? The Web’s autism universe could not have been more confusing. The most effective, it seemed — at least in terms of published data — involved an almost Pavlovian approach known as applied behavioral analysis, or ABA, which rewarded kids with being allowed to do things that interested them and denied them access to those things unless they completed tasks, usually mimicking a therapist who was modeling social scripts like “How are you? I’m fine. My name is…”

  “It looks like it really works,” said Kristin, with the slightly crazed look of one who has spent too long in front of a computer screen. The only problem was that it demanded an in-home regime of forty hours a week with a full-time therapist who would set a daily activity schedule that we must never deviate from, even when the therapist was not there. And which would cost about $50,000 a year.

  “Fifty grand?” I was incredulous. “How are we supposed to come up with that?”

  “I’ve sent some e-mails to the special-ed department at the university,” said Kristin, her voice wooden. “I can get the assessments arranged for next week, and someone to come out and start ABA.”

  “But with what money?”

  “We’ll find it. But damn it, Ru, this is where I’m so mad. It says that the earlier you start the interventions, the better the chance the child has of total recovery, and we’ve wasted almost a year thinking it was just speech delay…”

  “Total recovery? That’s even a possibility?”

  “So the ABA people say.”

  “But it’s a brain thing. I mean… I mean, Rowan’s retarded. You can’t recover from autism.”

  I remembered the autistic kids I’d known as a child in London. I’d been sent briefly to a Waldorf school, where “normal” and mentally and physically handicapped kids had all been placed alongside each other. Two autistic boys stood out in the memory. One, Simon, regularly used to strangle the other kids and had to be pulled off them by force now and then. He’d stand and flap and screech. He had once set fire to the school. The other one, an older boy called Robert, used to get his penis out in the middle of the crowded hallways, masturbate wildly, and shout “Cock-a-doodle-doo!” at the top of his voice.

  Would that be Rowan? I looked at him where he was sitting on the kitchen floor — such a beautiful child, with his dark blue eyes containing an inner circle of green, his wavy brown hair, his athletic little body and face full of devilish charm — dragging the cat around by her back legs. Strangely, she tolerated anything he did to her, as did friends’ dogs and other pets. He seemed to have a thing for animals, and they for him. I mean, I was good with animals too, especially horses, but not like him. He seemed to have a direct line.

  “Apparently they can recover,” Kristin went on. “If you get in early enough. And those bastards at the county early childhood intervention unit, they must have known. I called them today and they as good as admitted it! Said they’d had their suspicions but didn’t want to label him! Label him! Ha — didn’t want to have to recommend him for more services, more like. Almost a whole year we’ve wasted!”

  “And what about the pediatrician — you’d have thought he’d have noticed something.”

  “Well, he didn’t, did he? We’re on our own, it seems.”

  And we were. As Rowan became more and more dysfunctional, even earning a living became hard. I stopped riding, deliberately keeping Rowan away from horses because he was so unpredictable. Our assumption that Rowan would share a life of adventure with us was firmly dashed. Instead, life had suddenly become a mechanical drudgery of driving from one therapy and assessment appointment to another and dealing with insurance companies, therapists, and Rowan’s ever-mounting, inexplicable tantrums. Tantrums on the street, in which his screaming once even drowned out the noise of a jackhammer crew, who downed tools and just stared in awe as Rowan, a tiny human decibel machine, hurled himself to the ground and began to bang his head so hard against the concrete we had to restrain him, head and heels thudding into the hard paving as if he were an epileptic.

  Sometimes his rages would be accompanied by projectile vomiting, like that of the child in The Exorcist. People would offer to call the emergency services. Or tut-tut their disgust at these terrible parents who let their kid get away with such abominable public behavior, sometimes stopping to tell us we should be ashamed of ourselves, letting a child behave like that on the street or in the store. It was small consolation to snarl “He’s autistic — what’s your excuse?” and see them retreat, embarrassed and guilty. This constant barrage of noise, of emotional violence, of utter powerlessness, had become our whole life. Social life, even our sex life — for we were so exhausted at the end of each day — began to fall by the wayside. The glue of passion that held us together was starting to come undone.

  However, through our cyberspace trawling we did discover the likely cause of these strange, overwhelming tantrums — that they were probably neurological in origin; his nervous system was almost certainly overactive. Autistic brains, it turns out, have a much greater number of nerve cells than “neurotypical” brains. The result can be extreme sensory overload. A breath of wind on Rowan’s cheek could feel like fire from a flame-thrower. The fluorescent lights of a supermarket or day-care facility could look like lights being strobed at one million times a second. His clothes or bedcovers could suddenly, if the wrong neurological switch was thrown, feel like lead weights or burning napalm. Not that this helped to console him when the firestorms went raging through his brain and body. But it helped us to understand a little what we were dealing with. We and millions of other parents: the past fifteen years had, we learned, seen an enormous, almost 1000 percent, spike in the numbers of autistic kids showing up in the industrialized world. Why?

  Many of these were kids like Rowan, with autism-like symptoms but whose profiles didn’t quite fit the classic autism model. There was even a new name for their condition: pervasive developmental disorder not otherwise specified, or PDD (NOS). An increasing number of scientists were suggesting that the cause might be a gene-environment interaction: perhaps genetically susceptible children were reacting to an excessive buildup of toxic heavy metals in the environment, especially mercury poisoning, which is known to produce symptoms very close to autism. But no one knew for sure. Dr. Simon Baron-Cohen, the U.K.’s leading autism researcher (and cousin to the famous Borat), described PDD (NOS), with classic British understatement, as “the part of the autism spectrum we understand the least.”

  PDD (NOS). It sounded so scientific. All it mean
t was really like autism but not entirely and so therefore we don’t quite know.

  The good news, supposedly, was that if something was caused biologically, it could in theory be treated the same way. Chelation, or the introduction into the body of a chemical agent that would bind to the toxins and take them out with the body’s waste, was one treatment offered. We were no strangers to this — by an odd coincidence, Kristin had herself been on chelation treatment for some years, having been diagnosed at age thirty with a rare condition called Wilson’s disease, which prevents the body from processing copper. If she did not take zinc several times per day (copper binds to the zinc and then leaves the system with it), she would eventually die of cirrhosis of the liver. So began an endless and expensive round of appointments with specialists — Rowan screaming loud enough to break glass through every second of them — to set up our son for chelation.

  Then there were antivirals. Studies suggested that some PDD kids had nervous systems overwhelmed by viral activity, perhaps exacerbated by childhood vaccinations, which caused inflammation of their nervous systems and which, through treatment with antivirals such as Valtrex, the drug used to combat herpes, could be reduced, allowing correct amounts of neurological information to reach the brain. Some parents reported miraculous results.

  We had Rowan’s DNA tested, and it turned out that he lacked a gene that produced an enzyme called glutathione, which helps the body metabolize toxins. So along with giving him crushed-up Valtrex and rubbing his skin morning and evening with a horrible chelation ointment that stank of rotten eggs and that he violently resisted, we had to give him glutathione daily. As well as a score of other supplements, because chelation took good things out along with the bad. Suddenly we became one of those families with a medicine cabinet stuffed full of vitamins and minerals, pharmaceuticals and sundry homeopathic supplements, all of which had to be consumed daily. To get this horrid cocktail into him required a twice-daily dose of chocolate milk, sugared to the max to disguise the taste — which of course made his hyperactivity and tantrumming that much worse.

  But there was one other environmental solution at our disposal, a free and readily available one that Rowan, far from resisting, actually loved: the woods behind our house. Whenever a tantrum happened during daylight hours and we were home, there was one thing I could do: take Rowan out into the woods. Immediately his screams would lessen and out he’d fly, flitting between the trees like some happy woodland elf.

  Now, Texas is not without its risks. There’s a local saying: “If it doesn’t bite, stick, or sting, it ain’t from Texas.” You don’t go wandering blindly into tall brush without a swishing stick to warn the rattlesnakes and give them time to move out of the way. And those aren’t the only snakes: cottonmouths in the water, shy but lethal coral snakes under stones, and copperheads disguised among the fallen leaves. We have fire ants, scorpions, and poison ivy, oak, and sumac. Hornets the size of your thumb, killer bees, black widow and brown recluse spiders that, if they bite you, mortify the flesh and leave a gaping, leprous hole. Not to mention prickly pear, pencil cactus hidden in long grass, sharp-leaved agarita. Not a place to let an autistic kid run wild.

  But Rowan, as preternaturally agile as he was cognitively delayed, had by the age of eighteen months learned his way around the trails in back of our little red house and was able to find his way back home from any point within half a mile of our door. In the course of that time he had blundered into fire ant piles and had learned, after the swarm had ravaged his fat little leg with searing bites, to leap or avoid mounds of soft red earth. He had come face to face with a couple of snakes and learned to look but not touch. He knew not to put his hand under stones or into holes after the first wasp stung him. It was a risk to let him run. But a risk worth taking, because always, within seconds of entering the trees, the screams would lessen, fade, and finally disappear when he found a patch of sand to run his fingers through, a piece of variegated bark to look at, or when he sat down on the trail to become lost in the intricate lattice patterns of a dead yellow leaf.

  We had some regular routes: a fallen elm with branches that could be easily climbed; an ancient mustang grapevine, thick as my arm, that Rowan had discovered could be used as a swing; a wide cattle pasture surrounded by a natural parkland of wild pecan trees, where a creek ran sweetly over rocks in a small waterfall and the half-wild cows gathered in a defensive circle and looked at us as if we were aliens dropped from another planet. Here, at least, Rowan was at peace.

  Then there were zoos. Austin had two of them, each quite small, each something under an hour’s drive from home. We decided to take Rowan there after noticing his intense interest in the wildlife documentaries we sometimes brought home from the video store, not to mention his fascination with any small bug or critter he found crawling around outside. The zoos were an instant success, but he wasn’t at peace there. Quite the opposite — he’d enter a hyperactive phase, going everywhere at a hard trot, then stopping and running in circles by a cage of ring-tailed lemurs while a mountain lion that clearly regarded him as prey looked longingly at him through the wire, flicking its tail with hunger. He’d writhe on the ground and babble in front of the bemused peacocks that wandered between the cages. He’d try to climb the fences — he was once halfway up and over a crocodile’s enclosure before I grabbed him, much to the croc’s disappointment, no doubt — then tantrum violently when prevented, often vomiting or shitting his pants at the same time, so that other parents and visitors would cluck disapprovingly and move away from the noise (Kristin and I were becoming inured to public censure). But he was into being there. Animals and nature were what motivated him. That much was clear.

  And although now, when he was almost three, he could still barely talk, conversely he also seemed to love words — not to communicate, but the single words themselves, sometimes strung together in half-babbled lists of animals or Thomas the Tank Engine train characters. Kristin spent hours each night reading to him. It was impossible to tell how much was sinking in, but it was clear that he loved it, curled up next to her, letting the words flow over him like warm water. Was it just the comfort of having her close, of hearing her voice? Or was his imagination latching on to the story in some way unique to himself? We could not tell.

  Then one day Kristin had a brainwave. She got on the Internet and ordered about two dozen animal posters, because animal names seemed to be what Rowan recited most; she ordered photographs of every kind of mammal, bird, and reptile if the image was striking enough to arrest her eye as she trawled the thumbnails. When the posters arrived in the mail, she took them all off to be laminated, and then, one long afternoon while Rowan was at his special-ed class in the local public school (where the teachers regarded him as cute but unreachable), she filled the walls and ceiling of his room with animals.

  Rowan was overjoyed, jumping up and down, clapping his hands, and laughing with delight as soon as he went upstairs that night. I went in to check on them later and found him and Kristin lying side by side, looking up and pointing at each picture, reciting the names of the animals together: “Gemsbok oryx, brown bear, redheaded barbet, saltwater crocodile, baby panda, mommy zebra and baby zebra, Siberian tiger…”

  Within a couple of evenings Kristin was starting to make up stories about the animals each night as they lay there together. “Once upon a time,” she began. “There was a little boy called…”

  “Rowan!”

  “That’s right, darling! That’s you. And one day Rowan was walking in the woods behind his house when he met a very nice gemsbok oryx riding along on a bicycle…”

  Could you kick-start an imagination? We were determined at least to try.

  So between the zoos, which brought out his obsessive side but tired him out, and the woods, which calmed him, absorbed him, and where no one could censure us, we had our points of refuge. Then came the day he got away from me.

  It happened after his first applied behavioral analysis, or ABA, session. It was a ter
rible day. The woman therapist was sympathetic, had autistic children of her own that she had, she said, treated successfully with ABA. But she insisted that in order to concentrate sufficiently to be able to imitate her in simple movements or phrases, Rowan had to be in a closed room with her, with no distractions. No matter how much he cried, threw himself at the door, panicked at this sudden, inexplicable confusion and confinement, he was not to be allowed to go out or pick up a toy or other comforting object until he had fulfilled the tasks prescribed. It was like watching him being tortured. He clearly had no idea what he was being asked to do. At the end of an hour (an expensive hour), the therapist informed us that from now on we were going to have to schedule our lives rigidly with precise activities at precise times, “with no deviation — otherwise it undoes all the good work,” including sticking to an hourly chart, to be posted on the fridge, that Rowan and Kristin and I would all do homage to each morning and consult throughout the day so that Rowan would come to understand the meaning of structure.

  I could not see how we could possibly adhere to such a schedule. My work didn’t allow it, nor did Kristin’s. Nor did the reality of leading a life where, because our families both lived thousands of miles away, we often had to get on planes and deal with the vagaries of travel. If there was ever a family that required flexibility, it was us. And then there was the cost — not to mention the fact that Rowan obviously hated the therapy and regarded it as inexplicable punishment.

  When the session was over, I took him for a walk, wanting to clear both our heads. One moment I was sauntering behind him as he trotted along the familiar woodland trail, the next I was sprinting in sudden alarm as he swung unexpectedly left through the trees in a direction he’d never taken before, out of the woods and into the narrow belt of rough pasture that separated our property from my neighbor Stafford’s horse pasture. Quicker than I could make up the distance, Rowan was through the wire fence and in among the small herd of four horses, who happened to be grazing right there on the other side. Laughing delightedly, he threw himself onto the ground, belly up, right in front of the alpha mare, the herd leader, a big bay quarter horse called Betsy. I froze. Any sudden movement — his or mine — could spook her and leave him trampled and broken on the ground.