Can Children Be Cured?
By Katherine Seligman for the San Francisco Chronicle.
On a sunny morning in early fall, six fourth- graders hold hands in a Mill Valley school yard, playing a new generation of PE game called Swamp Trail. They stand with their feet on small green plastic squares, inches from a scattering of blue beanbags. The object is for the children to pick up the beanbags cooperatively, one at a time as they stand in line. They giggle collectively, their sneakers wobbling as they try to avoid collapsing in a heap.
What’s most notable is what you can’t see. One of the children, though you can’t tell which, was diagnosed with autism when he was 2. He couldn’t speak. He’d rock back and forth and wouldn’t make eye contact or look up when anyone called his name. But now Humza Iqbal twists around to get his beanbag, gives a leap of joy and grabs his teammates’ hands. He has grown into an articulate child who excels in school and has friends and play dates and all the ordinary trappings of a 9-year-old life. He comes home from school, does his homework (“I don’t like to procrastinate,” he says the first time I meet him), then might read, pop in a video game or play with his sisters who, he admits, sometimes bug him.
None of this happened overnight. Soon after her son’s diagnosis, Sara Iqbal embarked on a quest that eventually occupied most of her waking hours.
It evolved into a seven-year odyssey to find interventions for his behavioral, developmental and medical problems. It’s remarkable partly because of the tremendous energy, patience and untold funds she and her husband, Javaid, devoted to helping their son — what they say any parents would do — but also because Humza appears, by all available measures, to have recovered.
This story is not about the question of what caused his autism. There is no official answer to that. His parents say his problems emerged a few days after vaccinations in the first months of life and flared following subsequent ones. That is a link the nation’s top public health agencies — including the National Institute of Medicine and the Centers for Disease Control and Prevention — have investigated and say is not supported by scientific evidence, but one that continues to polarize families and researchers. Instead, this story is about one little boy among a group that scientists are increasingly interested in — those who seem to get better.
There is still no agreement about why he got better. That remains controversial and raises fundamental questions about the nature of the disorder. Is autism purely a brain disorder? Is what is being diagnosed as autism more than one disease?
There are plenty of stories about children who don’t make as much progress, regardless of the time and effort their parents invest. Some experts warn that it’s impossible to extrapolate from Humza’s experience — that the conglomeration of treatments he received wouldn’t necessarily work for other children, or that he might have gotten better without them.
And yet, there he is, a kid who once didn’t answer to his name but who recently told his mother that he is like both Bill Gates and Lance Armstrong. “I’m like Bill Gates,” Sara Iqbal said he told her, “because I’m smart, and I’m like Lance Armstrong because I had a disease and I got better.”
She worries how he will look back and digest everything that happened to him. She said she’s heard of parents who put their children in new schools or call them by different names once they recover enough to shed the autism label. It’s something she struggled with, but said she wanted to make her family’s story public because it is a hopeful one and also because she wants to remove the stigma. “If your kid had leukemia, would you feel stigmatized? No,” said Sara Iqbal. “The word autism scares people. … I feel if we don’t talk, then people will say these kids can’t recover and we have no rebuttal.”
Humza Iqbal came into the world on a May afternoon in Marin County, weighing a modest but healthy 6 1/2 pounds. He had a thatch of brown baby hair and his mother’s large brown eyes. His birth was uncomplicated, and after one night in the hospital, he went home with his parents to join his 2-year-old sister. He was a happy and easy baby who thrived in the beginning, nursing well and bulking up to about 10 pounds by the time he was
6 weeks old.
What happened next was neither happy nor easy, but is part of an unexplained phenomenon unfolding across the world. Somewhere around 2 months, Humza started having trouble. He spiked a fever and developed diarrhea that turned bloody. It persisted on and off for a year. His parents tried different strategies and formulas. Nothing helped. After the first year, he no longer clapped his hands or mimicked expressions. He stopped hitting normal milestones. While he was undemanding during the day — in fact he didn’t seek out attention — he was often cranky at night.
By 14 months he was flapping his hands. He would fixate on one cartoon videotape, although a test revealed Humza was deaf. At 2, he had no words.
That is when his increasingly worried parents took him for evaluation in San Francisco at UCSF Stanford Health Care (a partnership between the two prestigious medical institutions that has since ended). Another test showed that his hearing was normal. He was referred to a team of behavioral and developmental experts. They studied him over three weeks and finally reached a conclusion: Humza had autism, the fastest growing developmental disability in the nation. Federal agencies estimate that autism — a disorder characterized by impaired social skills, stereotypical or rigid repetitive behaviors and communication problems — occurs in 1 in 166 births.
“When he said, ‘Your child has autism,’ the doctor was so serious and I still had a smile on my face,” said Sara Iqbal. “I didn’t know what it was. Then he explained and my face fell. I thought there must be some medicine or surgery, but he said there was no cure.”
All these years later, her eyes fill with tears as sits on the sofa in her Mill Valley living room and recalls hearing the test results, one after one, each like a hammer on her heart — adaptive behavior, 2nd percentile; daily living skills, 1st percentile; socialization, 6th percentile. She had never heard of autism. What was this thing that had stolen away her child, she wondered?
By the time he got his diagnosis at age 2, Humza’s parents were already exhausted. A typical day consisted of Sara Iqbal trying to interact with, comfort and calm her son. Noises like the tea kettle or doorbell set him off. It seemed the only thing that could soothe him was a favorite video of the children’s program “Blue’s Clues.” He could sit and watch that, but if it was taken away, he screamed. His parents began bringing it when they went to friends’ houses. The family often socialized with a tightknit group of relatives and friends, but going anywhere became an ordeal. They never knew what would happen. Sara Iqbal was so tired at night when Humza woke up crying that she would take him into her bed. During the day, she had to watch him every minute.
Feeding him presented other problems. When he was just a few months old, the doctor suspected his digestive problems might be due to food allergies — even though he was exclusively drinking breast milk — and suggested soy, then dairy formula. At 2, he had trouble chewing. Food sat in his mouth until it dissolved — when he would eat. Mostly he drank milk, up to eight bottles a day.
The Iqbals returned home with their son’s diagnosis, anguished at its severity. They turned to their strong Muslim faith, they said, as they contemplated how to help him. They prayed. And they started to plan.
“His diagnosis was a long and nerve-racking thing,” said Javaid Iqbal, a mechanical engineer who now works in information technology for a discount brokerage firm. “It was a roller coaster. I still remember the winter evening when we got the diagnosis. I cried and cried.”
Sara Iqbal cried also. She was, by nature and experience, a determined woman. She’d learned after losing her mother at age 14 to a sudden heart attack that she would have to stand up for herself. “I never wanted anyone to feel sorry for me,” said Iqbal. She feels the same way, she said, about Humza, whom she named — before she knew how much it fit — after a warrior known for bravery.
She was always interested in medicine and took some premed classes at college in her native Pakistan, where she met and married her husband. But she found she loved literature and decided to make it her major. She always had the notion, she said, that she wanted to make a difference. “I used to pray for that, that I don’t just spend my life on myself,” she said.
In 1998, she took a look at the recommendations from Humza’s specialists and set out to educate herself. The evaluators from UCSF Stanford Health Care suggested language, speech and behavioral therapy. They said Humza would need help with sensory-motor integration and oral-motor difficulties. There was mention of specific techniques with names she’d never encountered before — ABA and “floor time.” And there was a recommendation for blood and neurological tests.
“I would get up early and then spend all night researching treatments,” Sara Iqbal said. “I’d be at the computer at 4 a.m.”
She sifted through myriad programs and approaches and looked up support groups and organizations. One of the first forays she made was to the Option Institute’s Son-Rise Program, developed by a couple with an autistic son who recovered. She knew little about the program, but it had a hallmark that appealed to Sara Iqbal. “You’re not giving up on your child.
Neither are we,” it promised.
She traveled to Massachusetts for a Son-Rise course where she learned some basics of play therapy, such as how to encourage eye contact. Someone there suggested making a list of hopes for her son. At the top of a piece of lined notebook paper, she wrote that she hoped he would be able to say Mama and Daddy, to play with his sister and, finally, to speak the words, “Mama, I love you.” Then she wrote him a letter, one of course she never knew if he’d ever be able to read, in which she told him how much she loved him and had learned from him. “Mama will always be there for you,”
she wrote. “You can always count on Mama.”
When she returned, she immersed herself in more research. She used the Options approach at first (paying $1,800 for a two-day consultation, she said), but found, for her, it wasn’t very helpful. “There was a learning curve for me in all of this,” she said. What everyone told her — the evaluation team and every other source she could find — was that early intervention was crucial. But getting help from public agencies took time.
They had waiting lists for therapy and refused to pay for most treatments, Sara Iqbal said.
So she went out on her own and took classes on specific behavioral techniques. She hired a team of four to five people to work with Humza using a combination of methods she eventually called “My Program.” She studied Applied Behavioral Analysis, which involves behavior modification and rewards to master skills, which are then monitored in extensive notes.
Then there was something called “floor time,” where therapists engage kids in play — sometimes just joining them in kicking a wall — to establish two-way communication. She created a therapy room in her house, complete with a door that had an observation window.
The Iqbals say they lost track of how much they spent on Humza’s treatment, but estimate it cost “thousands and thousands of dollars.” They say they got “little cooperation” from the state Department of Developmental Services, whose regional centers dispense referrals and treatment funds for a growing number of autistic kids. “They paid for a little,” said Javaid Iqbal. “But if they spent $1, we spent $1,000. … I said I’d be willing to sell the house.”
When the team wasn’t there, the Iqbals worked with Humza, borrowing from all therapies. Sara Iqbal liked the technique of one behavioral program, for instance, that set goals of learning specific small tasks but didn’t like the reward system. Instead of giving her son treats for his successes, she wanted the promise of satisfaction and more fun to be the reward. So she created her own games. She made him a pretend driver’s license, for which he’d have to state his name and address. At night, the Iqbals turned their living room into a drive-in restaurant or played their own version of “Who Wants to Be a Millionaire” to work on language skills.
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