The Prodigy's Cousin (2 page)

Before we get too far ahead of ourselves, though, let's start along a journey that, for Joanne, is more than eighteen years in the making.

Let's begin with a Canadian family of four, a doctor and an engineer whose sons gave them a firsthand look at the sometimes razor-thin edge between prodigy and
autism.

Lucie
*
is well acquainted with
the look:
the raised eyebrows and slight drop of the jaw. It's often accompanied by a quick jab of silence that wounds the conversation.
She used to encounter it a lot when she talked about her sons, so, for the most part, she didn't. She's a sociable, articulate French-Canadian doctor, but talking about her two boys is a little complicated; neither one is exactly typical.

By the time her older boy, Alex, was seven, he was a bright, wiry second grader with blue eyes and dark hair. He loved jujitsu, tickled his brother, and spent hours perfecting intricate Lego creations.

No one believed her when she said that he was—had been—autistic. She could
feel
the skepticism. There's no cure for autism, acquaintances said; you don't just snap out of it. Alex must have been misdiagnosed. It was too hard for them to reconcile the boy they knew—a well-liked, friendly kid who skillfully bombed down ski slopes—with autism.

Lucie knew better than to say much about her younger son, William, who was then a fidgety six-year-old with a cherubic face and a mischievous smile. He had also been diagnosed with autism, but his symptoms seemed to be melting away, just as his brother's had.

Then there was the matter of William's
hobbies:
letters and numbers; math, science, and geography. He had taught himself the alphabet by eighteen months and read obsessively at two and a half. He delighted in math, could square numbers in his head by the time he was four, and tucked away people's birth dates so he could use them to calculate how old that person would be in a given year—past or future. He took a scorched-earth approach to reference materials like the atlas, the dictionary, and the periodic table.
He consumed everything in his path; he kept it all in his “warehouse” of a mind.

It was a bit isolating for Lucie to keep so much to herself, especially when there was so very much to tell.

Lucie's first pregnancy was uneventful. She carried her baby to term and delivered a healthy boy. His eyes were pale blue and shaped like sideways teardrops; he had creamy skin, chubby cheeks, and a whisper of light brown hair. She and her husband, Mike, named their son Alexander. They called him Alex.

Within months, Lucie sensed that something was off. Alex was extremely—almost alarmingly—serious. Other babies laughed and gurgled, but never Alex. Nor did he form much of an attachment to her. When Lucie went back to her job as an anesthesiologist, six-month-old Alex was indifferent. There was no fussing when she left or excitement when she returned. As the months ticked by, he remained oblivious to her comings and goings.

He had a few quirks. Once he began to crawl, Alex discovered a crack in the grout between the tiles in the living room. He stared at it and traced it with his finger for long periods of time. He would venture off to another area of the room but then scamper back to the crack. He noticed whenever a lightbulb burned out, whether in his own home or a shopping center, and, just as with the crack in the grout, he would stare at it for long periods of time.

He wasn't speaking. Alex's first birthday passed, and he had not yet spoken his first word; he hadn't even begun to babble.

But Alex was quick to walk and run, and Lucie managed to ignore the worries that tugged at the back of her mind. The standard parenting books' refrain helped: every kid develops at his or her own pace.

Shortly after Alex turned one, they traveled to Pennsylvania to see family. The youngest of Lucie's nephews was Alex's age; the boys were born just a few weeks apart. The difference between the two was jarring: Alex's cousin gestured, followed his parents' gazes, waved, and pointed at things he wanted. He babbled as he played and cried when his parents left the room. Alex did none of those things.

When Alex was sixteen months old, Lucie delivered her second son, William. It was another uncomplicated pregnancy, another uncomplicated birth. She had another beautiful baby boy, an alert little guy with big eyes and a happy disposition. But this time when the doctor who came around to conduct newborn hearing tests offered Lucie the usual pamphlet on resources for children with language delays, she took one.

By that point there was no denying that something was going on with Alex. He showed no interest in his baby brother. He looked at him for a few seconds and then walked away. He was never affectionate with his parents, either. If they tried to hug him, Alex angled his entire body away to avoid contact. When Lucie tried to coax Alex into looking at her, he stared into the distance.

He covered his ears and screamed when he heard music play, bags crinkle, or water run. Lucie and Mike walked on eggshells: they quit listening to music; they only unpacked groceries when Alex was out of earshot; they waited until he was napping to rinse dishes—anything to avoid setting him off.

Though he had always seemed physically adept, Alex began doing an odd, repetitive dance when excited. He walked on his toes and flapped his hands.

He developed a fascination with drawers and doors. If Lucie or
Mike left a door open, even the door to the dishwasher, he stared at it, silently, until someone closed it. He was fascinated by the sliding mechanism on which the drawers operated, and he opened and closed them repeatedly.

He had many toys, but he didn't play with them the way other children did. Often, he lined them up. He plucked small wooden trees off his train layout, positioned them carefully along the edge of the counter, and ran his eyes over them. Once the trees were perfectly aligned, he stood in front of the counter and rocked back and forth, staring at the configuration. He did the same thing with figurines; he did the same thing with cereal boxes.

A few weeks after William was born, Lucie took Alex to a drop-in clinic at First Words, the facility she had read about in her hospital pamphlet, the one that screened young children for speech and language delays. After Lucie filled out the forms with information about Alex, a speech and language pathologist pulled her into a private room. She was certain Lucie had made a mistake; she must have reversed the numerical rating scale. Lucie assured her that she had understood the scale correctly. “Her jaw dropped, and that's when my heart dropped,” Lucie recalled.

The pathologist issued Alex an urgent referral for an appointment with a developmental pediatrician.
Two months later, Alex was diagnosed with autism. He was only eighteen months old—young for such a diagnosis—but it wasn't even a close call. Alex checked nearly every box.

“We were devastated,” Lucie recalled. “I was trying to be functional because I had a sixteen-month-old and a newborn. I was sleep deprived and trying to cope, but I was mourning the loss of everything I expected of my child. He may never speak; he may never show affection, go to school, make friends, get married, take care of himself, or have a job.”

Getting help for Alex would be no easy task. The waiting list for publicly funded intensive behavioral therapy was roughly a hundred
people long. It was a nonstarter: don't hold your breath, Lucie was advised; don't count on it.

Lucie was scrappy. She had worked her way through college; afterward, five or six banks refused to lend her money for medical school, but Lucie kept filling out loan applications until she found a taker. She was trained in psychology and medicine, and Mike was an engineer. They could handle this. Lucie and Mike signed Alex up for speech therapy and occupational therapy while they waited for a spot in the behavioral therapy program. In the meantime, Lucie, who is meticulously organized, read everything she could find on autism intervention. She investigated evidence-based therapy, joined autism support groups, participated in workshops, and attended a three-day international autism conference.

She was intent on language. At every opportunity, she looked Alex in the face and enunciated words as clearly as she could, repeating them several times.

She got nowhere.

She worked on gestures. She tried to teach Alex to point to things he wanted, often while holding a colicky baby in her arms. When that didn't work, she tried following his gaze to see if she could figure out whether he was looking at a particular drink or toy, silently indicating his desires.

She got nowhere.

When Alex had another assessment a few months after his diagnosis, he was still yet to babble, let alone produce his first word. During the appointment, Alex paced the room and stared at the lights on the ceiling. He danced on his toes. He lay down on the floor and watched the wheels on a toy truck roll back and forth. He opened and closed cabinet doors. When someone stopped him from opening the cabinet doors, he cried and banged his head against the wall. His adaptive functioning, a measure meant to reflect a child's communication, daily living skills, socialization, and motor skills, was at the
second percentile, indicating that Alex, who was a few months shy of two, functioned at the level of a ten-month-old.

Lucie threw out her parenting books. Alex wasn't meeting any of the developmental milestones. He wasn't even on the scale anymore. The parenting tips the books provided for children Alex's age didn't apply. Reading them was just too depressing.

She did, eventually, have one breakthrough. At one of Alex's speech therapy sessions, Lucie had learned about the Picture Exchange Communication System (PECS). The idea was to put together a collection of pictures that someone who was nonverbal could use to indicate his needs. Lucie created a binder with dozens of pictures of food, milk, and toys and began slowly, painstakingly, introducing Alex to it.

Alex learned to find the right card and lay it on the table when he wanted something. After he mastered that step, Lucie taught him to put the card in her hand instead of on the table. She continued upping the ante until Alex learned to look her in the eyes when he handed her the card and then, finally, to cross the room to give Lucie the card.

It was a success. If Alex was thirsty, at least he could toss Lucie a picture of milk. But it was also demoralizing. It had taken almost a year for Alex to master using the binder. Was this as good as communication would get?

Lucie hired a private behavioral therapist. The therapist came to the family's home and immediately criticized the PECS binder: There were too many pictures on a page, she scolded. It was too overwhelming for Alex. The therapist's interactions with Alex were no better. Alex didn't respond well to her. When Lucie intervened, suggesting a couple of activities Alex enjoyed and mentioning how she thought he might be starting to demonstrate affection, the therapist told her that autistic kids didn't feel love. Lucie kicked her out of the house.

Despair, long circling, took hold. Lucie felt a slow but building tide of disappointment, then bitterness, then resentment. She was pouring hours and hours of time into trying to help her son, but the rewards of parenthood were elusive. Alex never hugged or kissed her.
If she tried to hug or kiss him, he pushed her hand away. He never looked her in the eye or smiled.

When she was working at the hospital, she could sometimes, almost, shut everything out. She enjoyed what she did and felt effective. But when she got in her car at the end of the day, dread mounted. She didn't want to go home. “I felt hopelessly inadequate and ill equipped to deal with what had happened, and I was resentful deep down inside of Alex for making me feel that way,” Lucie recalled. “Being resentful about your child, it makes you feel very guilty. It makes you feel like a monster.”

Autism bloodied her marriage. She and Mike had always had a great relationship. They'd hit it off immediately when they met years before at a friend's birthday party and Mike, dressed in a black turtleneck and black-rimmed glasses, asked Lucie's opinion about the Canadian medical system. They had mutual friends; both loved Halloween; even planning the wedding was a breeze. But autism nearly ripped them apart.

Their finances were blown. They were a two-income household, a doctor and an engineer. They had never expected to pinch pennies, but as their bills mounted, they struggled to make ends meet.

They started couples therapy, and it helped. The therapist reassured them, over and over again, that their relationship was solid. All of the problems they were having, all of the stress, was completely circumstantial. They were big circumstances, but circumstances nonetheless. They could work through it.