This article first appeared in the May/June 1995 issue.
IT’S MID-MORNING IN MY THERAPY OFFICE IN BELLEVUE, Washington, and Elaine, the principal of my son’s progressive private school, phones me out of breath, angry and exhausted. She tells me to come at once and get Gregory, my wild boy. It is the kind of phone call my wife, Joanne, and I have been getting since Gregory was 4. He is now 10. I cancel my afternoon appointments, get in my car and drive the half-hour to Seattle.
I find Gregory sitting on the school’s main stairway, barefoot, surrounded by used Kleenex, blowing his nose repeatedly, fuming and swearing. He’s been kept out of classes for months and has spent his time in the principal’s office, writing in his journal and playing with the school computer. Earlier today, he hacked into the computer system files and changed all the passwords assigned to the teachers.
When he was taken off the computer for the rest of the day as punishment, the school’s student counselor tells me, he had a screaming and swearing tantrum. Eventually, he had to be restrained.
This is nothing new. Since preschool, Gregory’s teachers have risked their jobs to get him out of their classes, and Joanne and I have frequently removed him from other school programs that didn’t work for him. He is accused of incessantly bothering other kids by tapping or kissing them, or of losing his temper and devolving into loud, violent-sounding rage. He spits and blows his nose compulsively. Other children gang up on him or won’t play with him. He swears at the drop of a hat, calling teachers things like “vagina-face” and “penis-head.” He knows how to say “outhouse” in 10 different languages, he can build sophisticated electronic equipment, and he scores high on verbal aptitude tests, but he can’t get through an hour in a regular classroom without driving the teacher up the wall.
As I help Gregory clean up his soggy Kleenex and get his things together, the school counselor asks me about our family life. How much violence and anger does Gregory experience at home? Has he been sexually abused? What is his psychiatric diagnosis? They are questions I have been asked repeatedly; questions I once asked myself. More weary than insulted, I tell the counselor that I am not abusing Gregory. He’s not psychotic. Gregory, I say, has a profound neurochemical imbalance called Tourette’s Syndrome. I can see the counselor doesn’t really understand, but we both let it go.
In Jesus’s time, people would have said my son was possessed by demons; in the late Middle Ages, they might have thought he’d been raised by wolves, or sent for a priest with experience in exorcism. In the 1930s, they would have had no name for him he would just have been labeled psychotic and locked away. Even today, thousands of children like Gregory are misdiagnosed each year.
People like Gregory were first officially identified as a separate group by Dr. Gilles de la Tourette in France in 1885. Today, neuroscientists say that Gregory’s brain has an excess of the neurochemicals that foster impulsiveness and not enough of the neurotransmitters, like serotonin, that keep the rest of us inhibited, dampened and civilized. Ancient impulsive and instinctual parts of the brain the ones we humans share with mammals and reptiles have taken control, overriding the “thinking brain,” or neocortex. He is like a steam engine without a governor, an anarchic kingdom governed by impulses.
Sometimes I think they ought to call Tourette’s “the obnoxious disorder.” Touretters may touch other children on the butt, or kiss or mimic every third person on the street. They have difficulties with temper, disinhibited behavior and motor and verbal “tics” repeated, semi-voluntary muscle movements, grunts and obscene utterances. They may, like Gregory and Jonathan Swift, be fascinated with scatology. Their symptoms often lessen in adulthood, but many of them end up on the streets, in prison or working as doormen or on the late-night-shift at the post office. Something like a third manage to express extraordinary creative or physical gifts. The Roman emperor Claudius and Samuel Johnson exhibited Tourette’s symptoms, and so did Mozart, who fidgeted, compulsively touched other people and filled things to a head. The science teacher at Gregory’s school threatens to quit if our son is not removed, and the principal finally concedes that her school does not have the right program for him. Joanne and I long ago decided we would be “parents from hell” if that’s what it took to get Gregory an education. After a month at home and a few letters from our lawyer about the Americans with Disabilities Act, Gregory is readmitted to his letters with scatological references.
In the car on the way home, Gregory tells me that the school counselor had asked him about the “angry boy who wants to get out.” It’s not a line of inquiry that Gregory and I pursue. Gregory needs structure, a low-stress environment, safe places to blow off steam occasionally, and a healthy sort of inhibition, not practice in getting anger out. But where in this crowded and stressful world is he going to find people who can give him a little wiggle room? At home in our condominium that afternoon, he is full of remorse and despair. He threatens to jump off the balcony. He swears at his Tourette side and curses his difference. Joanne and I hold him and rock him.
This latest incident at school brings our local public school, with a teacher, an aide and a classroom of his own. Months pass. Using his school-provided laptop computer, Gregory, who has a highly developed sense of righteous indignation, is doing a research project on sexism and discrimination against people with health impairments like his own. He’s learning, his social skills are improving and his teachers sometimes bring other children into the classroom. Our school district, after years of ignorance about what is going on inside “wild boys” like Gregory, has become willing and able to help thanks in part to our consistent pressure. As for me, my relationship with my son has transformed my psychotherapy practice and enlarged my understanding of human behavior. When Gregory was born, my practice was full of individuals and couples, and I focused on communication patterns, feelings and personal histories. Now, I spend a lot of time with the families of children who have attentional and neurological anomalies like Gregory’s. I give much more credit to the “nature” part of the “nature-versus-nurture” equation. I think neurologically as well as psychologically. I read about, and use, behavioral and solution-focused approaches, habit-reversal protocols, relaxation techniques and environmental changes. I value the pharmaceutical drugs that allow my son to have the semblance of a “normal” life. I am amazed by what I don’t know about the process of change.
GREGORY WAS BORN IN 1983, about 13 years after my tour of duty in Vietnam. I had been stationed at the Long Binh Army Post, and I still remember the C-130 cargo planes spraying the surrounding jungle and us with the herbicide Agent Orange, which has been linked to genetic anomalies and nervous system disorders. At first, Gregory seemed like an ordinary toddler, except at night: he would scream with fright, in the grip of some kind of waking hallucination, his eyes open but unseeing. By the time he began preschool, we knew there was something really wrong. He was easily frustrated, with a hair-trigger temper, paranoid and totally oppositional. As soon as he could talk, he insisted on being called “Thomas the Dragon” a warning and a metaphor.
At preschool, he exploded when he was teased and ended up in the corner, playing alone. In first grade, he mimicked his teacher so exactly that she threatened to quit just to get him out of her classroom. We tried a loosely structured alternative school, and then a heavily structured program for kids with severe behavior problems. Nothing really worked.
Everybody had a theory, but nothing helped. One social worker sent us to view educational films on restraining violent children. Others thought we weren’t permissive enough or that Gregory was acting out the rage I held about Vietnam. A friend suggested past-life counseling, theorizing that my son and I had had trouble with each other in previous lifetimes.
I spent hundreds of hours in the medical library at the University of Washington, following hunches and clues, pulling books off the shelves. Gregory did not fit any single diagnostic template. I kept reading, and Gregory kept having serious problems at school. Then, when he was 7,1 found my way to the Washington State Learning Disabilities Association and an intake worker who asked the right questions and referred Gregory to a neurologist, who diagnosed Tourette’s Syndrome.
Tourette’s patients, I learned, seem to have an excess of exciter transmitters, especially dopamine, in the central, evolutionarily ancient, knob of brain cells that surrounds the brain stem and is known as the “reptilian brain,” where our most repetitive and instinctual behaviors are stored. Neurobiologists believe this excess of dopamine leads to an over-functioning of both the reptilian brain and the emotional or “mammalian brain” that is layered over it like the leaves of a cabbage. At the same time, the outer layers of the more reflective “thinking brain,” the neocortex, are starved of both dopamine and of the “civilizing transmitter” serotonin, so that the neocortex can’t rein in the impulses of the mammalian and reptilian brains. Low levels of serotonin lead to emotional disinhibition and prompt action without thought about consequences.
There is considerable overlap among these neurological anomalies: many Tourette’s children also have symptoms of Attention Deficit Disorder and Obsessive-Compulsive Disorder, even though the pattern doesn’t run the opposite way. These and other neuro-chemical imbalances can affect the ability to screen out stimuli. The brains of people with Tourette’s are like camera lenses set on “maximum open,” poorly equipped to screen out the televisions, radios and overlapping conversations of modern culture. This flood of stimulation, paradoxically, leaves them numb, and they find themselves repeatedly touching others or creating interpersonal firestorms in an attempt to create a sense of contact.
Chemical imbalances in the reptilian brain also affect behavior in other ways: when I watch the automatic, perseverant quality of these kids’ tics and repetitious jokes and questions, I think of the ritualized, darting head movements of lizards sitting on rocks in the sun.
Not long after Gregory was diagnosed, I began seeing kids like him, and their families, in short-term therapy. They are easy to pathologize. They look and act weird. But pathologizing them doesn’t help them develop and use their often considerable gifts. From working with these kids and reading autobiographical and clinical accounts of people with their traits, I’ve learned that many of them are powerfully curious, with a keen interest in getting to the core of things. Gregory, for instance, can build a piece of electronic equipment far more quickly and intuitively than I can even explain how it works, and he has very advanced skills on the computer. Others have unusual drive and purpose. Their perceptual boundaries are porous and this may leave them feeling undefended and chaotic, but it can also give them extra resources of creativity and empathy.
Many of the kids I see can’t resist closed doors or the forbidden. The assertion that something is “off limits” just eggs them on. They boldly go where other kids can’t imagine going. They invent things. Many inventors and artists, including Edison, Hemingway, Picasso, Dali, and many others shared Attention Deficit Hyperactivity Disorder traits–they delighted in being in the advance guard and loved to take dangerous risks. I keep the virtues of such traits in mind when I work with kids with attention differences. I look for their special, often-camouflaged gifts while I try to help them control the behaviors that have brought them to therapy obnoxious and compulsive behavior, oppositionality, temper problems, the inability to follow rules, tics that wax and wane with stress, and even promiscuity and eating disorders. And I have found that many of them can be helped by a form of family therapy that combines parent education with medication, habit reversal techniques and environmental changes.
SHARON AND HER HUSBAND DAVID, for example, were close to despair when they came in with their 9-year-old son, Arlen. Small for his age and physically unimposing, you wouldn’t really notice Arlen in a crowd except for the way he blinks, grunts and repeatedly throws his head back and forward in a figure-eight movement. At other times, he lashes out his right arm, as though practicing a karate move. These strange movements only stop when he is gazing at the water-and-oil knickknacks on the coffee table.
Nevertheless, he’s present and communicative, and it’s hard to believe he’s the same boy Sharon was in tears about whenshe called me last week. He had refused to get on the school bus, and she ended up driving him to school while he screamed obscenities at her, through tears, the whole way. At school, she tells me, he’s constantly in trouble. He taps other kids on the butt, or goes under their desks to tie their shoelaces together. A kid picking his nose across the classroom would send him into gales of laughter and pointing, and when threatened, he would go into paroxysms of swearing and screaming, sometimes to the point of frothing at the mouth.
A psychiatrist has diagnosed him with severe Tourette’s Syndrome and mild Attention-Deficit Disorder. He is on Clonidine, also known by the brand-name Catepres, which helps him focus, and in the first few weeks of therapy the psychiatrist added the antidepressant Imipramine, or Tofranil, which helps moderate his rage. But his parents tell me he still has short-term memory problems, a fast temper and tics, which are exhausting and painful as well as socially ostracizing.
As I talk with Sharon and David, I soon eliminate the possibility that Arlen is being abused, even though many of his symptoms his obsessions with bathroom subjects, impulsivity, temper and oppositionality mimic those of children who have been traumatized or neglected. The sad thing, of course, is that neurological differences like Tourette’s can help engender the very abuse its symptoms mimic.
Many parents’ relationships do not survive the stress of raising a kid on the brink of psychiatric hospitalization. The spark goes out, parents give up on intimacy with each other, and resign themselves to being crisis managers for an out-of-control child. Other families turn to religious fundamentalism and try to beat or chase the devil out. One of my clients, a 14-year-old boy with severe Tourette’s, came into sessions every so often with a notebook full of Biblical quotes that his parents required him to write over and over to purge the evil from his soul. And when Gregory throws his underpants in my face yet again at bedtime, I understand perfectly the frustration and rage that leads some parents down the road to child abuse.
Sharon and David, however, have a sense of humor about their family predicament. Their son is not a cowed human being, and their goals to get Arlen onto the school bus on time in the morning and to go to church and to social events with him without disaster seem reasonable.
I begin with Arlen’s tics because there has been surprising documented success in extinguishing them: about 80 percent of those who try a behavioral technique called “habit reversal” get a significant reduction. Using a protocol developed by behavior therapists Alan Peterson and Nathan H. Azrin, I first asked Arlen to draw pictures of the tense areas in his body surrounding the tics, and then to describe his body feelings before tic episodes the “premonitory sensations,” or unbearable psychic-physical “itches,” that cry out for expression.
Then I taught Arlen to redirect the urge to “tic” into a competing response that uses opposite muscle groups. I directed him to interrupt his normal head-back tic with a deliberate slow pull of his chin toward his chest, and to slow his eye-blinks. Instead of thrusting his arm out, I taught him to push it into resistance, like a seat back or couch pillow, until the urge passed.
After five weeks of practice, Arlen’s tics lessened, and I taught him and his parents some simple tighten-and-release relaxation exercises to soothe his overworked muscles. Feeling physical improvement is very important when a child has had so much experience of failure and feeling out of control. Sharon and David agreed to remind him to do the relaxation exercises and talk him through them if needed. I also taught Arlen to notice when his disinhibited states are approaching, so that he can find a private time and place a “refuge,” at home and at school where he can express them safely.
At the same time, I worked with his parents to help them set up situations that reinforce Arlen’s successes and avoid new failures. Parents can’t overdo praising these kids when they reduce their tics or otherwise improve.
We also worked on behavioral sequences and changes in Arlen’s environment. Together with Arlen and his parents, we worked out a quiet morning routine to compensate for Arlen’s poor organizational skills, short-term memory deficits and vulnerability to overstimulation. He was to be wakened quietly, with a rub on the back, some orange juice and toast and his medications. When the drugs began to kick in, his parents would draw his attention to the white board in his bedroom that listed the tasks he must have completed in order to get on the school-bus in time: shower, brush his teeth, get dressed, have breakfast and load his backpack.
His parents were to continually cue him, by asking him which task he needed to do next. When he succeeded at making it out the door on time, he would get to put a token in a jar by the door. Five tokens could be redeemed for a visit to the local video arcade or a new piece of computer software. At the same time, I encouraged Sharon and David to foresee situations that he couldn’t handle and keep him out of them. My son Gregory, for example, would love to learn to ice skate, but the chaos and excitement of the crowded rink would inevitably lead to disruption, tantrums and failure. Instead, we spend time on an empty ball field with him, teaching him to bat a ball.
When it comes to temper tantrums, I instructed David and Sharon to do what I do with Gregory: to calmly and constantly mirror back to him the behavioral signs of a wave of anger surfacing and beginning to crest “I’m noticing that you’re clenching your fists, you’re yelling, your face is distorted . . . if you can get control of yourself in five minutes we can go to the baseball field.” I encouraged Arlen to learn how to take a breath, use relaxation techniques, take time in a quiet space, and deescalate these waves of rage early on in the process. They also learned to sort out what Arlen can control from what he can’t. When parents or therapists see much of what these kids do as intentional, they can get involved in a contest of wills that leads to nothing but frustration.
By the end of 10 weeks, Arlen and his parents were communicating better, and his tics had greatly diminished. It is wonderful to see him relieved of some of his physical pain and to begin to have a life apart from his condition. In our last couple of sessions, he talked more vulnerably about his life and his difficulties, leading me to believe that his battered self-esteem is finally beginning to heal as well.
Arlen came into the world with this anomaly. His parents didn’t cause it, and I would have done them a great disservice if I had added my voice to all the other experts telling them that Arlen is acting out, or that they weren’t doing their job right. Sometimes it simply isn’t the parents’ fault.
WHEN I WORK WITH THESE children each with their own idiosyncratic mix of ADD, Tourette’s and obsessive-compulsive symptoms I try to get in touch with their creative side through the metaphoric language of storytelling, art, play and visualization. To counteract their hypersensitivity to external stimuli such as teasing or the sound of crunching potato chips, or even, in my son’s case, the sight of naked elbows, knees or toes I lead them through a guided visualization of a shield or a curtain of light descending to protect them. With practice, kids can trigger the “shield” by snapping their fingers, touching a lucky rock in their pockets, snapping a rubber band on their wrists, or saying a keyword silently. This can keep them out of a lot of fights and stop them from being “trigger bait” for other kids.
I also use the language of metaphor and play to suggest ways for them to see their predicament and change their behavior. One 8-year-old boy with a mix of Tourette’s and ADHD symptoms is fascinated by gem stones and is already a competent rock hound. Each session, he brings different treasures that he has identified and he gives me the full story on exactly where they came from. As we talk, I may say something like, “All rocks are different, and all are special in their own ways. Sometimes the best rocks are so covered up with dirt that you have to really look to find them. Sometimes a kid will have to really look at himself and see his specialness, and if he does he may find others who appreciate him just for who he is.”
I have also spent some time playing pick-up sticks with a genius-level 10-year-old Touretter who was continually angry with his dad because “he doesn’t ever listen to me.” When I talked to his parents, I discovered that the boy was oblivious to other people’s behavioral cues and had no sense of timing: he would make demands without noticing if his father was exhausted from work, in the middle of a family argument or in public where the family image was on the line.
During our game, I explained “how important doing things at the right time is in playing pick-up sticks . . . like talking to people so that they can hear you.” I went on, “It’s real important to notice really notice the way they look so that you can ask for things at the best time for them to hear you.” As we finished the game with him mercilessly trouncing me one more time, he looked at me grinning and said “Yes!” Several sessions later, when I asked how things were going with his dad, he told me that he just wasn’t having problems because his father was “finally listening to him.”
When I work with parents, I always encourage them to enlist their child’s strengths to help build control and success. If the child is mechanically creative, parents can invite other similar kids over for an electronic take-apart session. Special artistic and musical gifts should be nurtured, and children with an empathic love of nature should be given as much time as possible with pets, or out of doors.
IT IS A LOVELY NORTHWEST summer day. Joanne and I are standing in a circle with 20 or so other people in a field of tall, dry grass near a pond at a friend’s place east of Seattle. Our friend Patricia, who has studied Native American shamanism, is leading a prayer marking the summer solstice. A frog croaks lazily in the pond. Gregory is sitting above us on a huge boulder that forms part of our circle. Suddenly there are two frogs: Gregory is perfectly imitating the cadence and tone of the pond frog and is now in conversation with the creature. Gregory accepts smiles and a flutter of amused giggles from the group and continues to croak.
As the two “frogs” croak, I am reminded of a remarkable book called Don’t Think About Monkeys that I read in the early days of my son’s odyssey, co-authored by a man named John S. Hilkevich, who has Tourette’s Syndrome. “Out of my pain came visions of interconnectedness with the earth and sky,” he wrote. “With the same intensity of a Tourettic tension, I can feel in my body the hop of a rabbit or the surrender of a hawk in flight to the winds. I physically and emotionally feel the life force gushing from the wound of an injured animal or leaking from a plucked tomato, and so I pray my gratitude as I take life, with mixed feelings, to feed my own.”
I think of my own son’s vegetarianism, and his indignation at the pain we put animals through. I think of Gregory’s gifts and wonder how he will manifest them. I wish we could live in the country, where he could garden and have a dog. Gregory is a pathfinder, not a path-follower, and I know he needs special help if he is to avoid the loss of the enlivening natural wonder that is his heritage.
When the circle is finished and people head back to the main house, Patricia looks at the side of the boulder and sees that Gregory has scrawled, with a softer rock, a symbol: crossed straight lines in a circle. It is a Native American symbol for earth, Patricia says, but Gregory, as far as we know, doesn’t know this. The coincidence is remarkable.
Gregory is open to the experiences of life and the spirit in a more profound and intense way than most of us. This gift is a two-edged sword, because this openness comes so early in his life, when he is ill-prepared to manage it. It’s sometimes more than I can handle. Therapists and parents can be of service to a child like Gregory as trainers in the internal management of the wild rumpus, the chaos, that goes with this neurology.
In a primitive culture, Gregory’s mark on the rock might have been taken as a sign that he was destined to become a shaman. In our rushed and overstimulated culture, so out-of-touch with nature, Joanne and I can only vow to keep trying to make sure that our wild boy’s strange abilities will be noticed, respected and nurtured.
George Lynn, MA., CMHC, is in private practice.
