Katherine Seligman
Sunday, November 13, 2005
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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.
When Humza turned 3, the local schools became financially responsible for intervention. Initially, the county wanted Humza placed in a special- education class, his mother said. His parents fought to get him a plan that included individual therapy. Eventually, the city school district agreed to speech and occupational therapy and a home program during his preschool years.
Aside from behavioral interventions, Sara Iqbal also looked for solutions to Humza's medical problems. She took him to doctors for the diarrhea and asked for tests that often weren't covered by insurance. A petite woman with a disarming smile, she had no trouble pushing for blood work if she thought it was necessary. "I could be a pain," she admits.
She found information on the Internet about diets that were free of gluten -- wheat protein -- and casein -- dairy protein. Other parents said they'd found these diets alleviated gastrointestinal symptoms and resulted in behavior and learning improvements. She ordered videotapes about the dairy- and wheat-free diet and started Humza on one. She began attending conferences run by Defeat Autism Now, an education and advocacy group that believed autism could be treated biomedically.
In the first days of the diet, she agonized as he refused foods she offered him. But then, slowly, he started to eat pureed food. Within about three weeks, she said, she noticed a difference in his digestion problems and his behavior. After a month and a half on the diet -- and receiving behavioral therapy at the same time -- Humza began looking at his parents.
Based on protocols developed by various organizations and doctors, who ordered blood tests, she started giving him vitamin and mineral supplements -- particularly B vitamins and magnesium. Eventually, he started babbling and making vowel sounds. She added vitamin A in the form of cod liver oil and essential fatty acids. He gained words and began putting them together in sentences, she said. For several months, he received weekly doses of intravenous glutathione, a naturally occurring antioxidant that helps flush toxins from the body. At least one major study has shown low glutathione levels in some autistic children. A double-blind study is now taking place in conjunction with the UC Davis M.I.N.D. Institute (Medical Investigation of Neurodevelopmental Disorders) to show if administering glutathione improves autistic symptoms. In Humza's case, his mother said that gradually after the glutathione he began making social connections.
"Had we stayed with the conventional therapies, I don't think we would have made the initial headway we made in the first month (with biomedical treatments)," said Sara Iqbal. "We'd add another supplement and boom, we saw a change. ... We looked at it as a disease. The more we started fixing, the more he improved."
The transformation happened by degree, each milestone noted, with the small changes beginning to amount to larger ones. She dismantled the therapy room a few years ago and uses much of her time now helping other families with autistic kids find resources and treatments. She talks to parents from her community and as far away as India. Humza still follows a gluten- and casein-free diet -- although now he can cheat occasionally -- and takes some supplements. In addition, he gets occupational therapy to build upper-body strength and ongoing evaluations to make sure he continues to do well. But now he also leaps up when his father comes home and then begs him to play a game. In January, Sara Iqbal returned from a trip and was annoyed to find the house in such a mess and not one of her three kids willing to help clean up. Humza went upstairs to finish his homework, but came down later, handed her a letter and hugged her. "I thank you for everything not just now but always," he'd written. "I fully thank you I can't even write how much I thank you because it is way, way, way, way (x10) too long. Love, Humza."
"In December of 1998, I was just wishing he could say Mama," said Sara Iqbal. "If anyone had told me this was the kid I had, I would have been so surprised I would have jumped off a roof."
Humza is one of an unknown number of children diagnosed with autism who appear to have recovered -- or significantly improved, even though the cause of the skyrocketing number of diagnoses of the disease is still a mystery.
Perceptions of the disorder continue to change, just as they have since it was first described in a 1943 paper by Leo Kanner, a psychiatrist at Johns Hopkins University School of Medicine. Psychiatrists jettisoned the 1950s notion that autism was caused by "refrigerator mothers" who interacted with children in a cold, stilted manner. Now, autism is considered a spectrum disorder, one that varies in severity and symptoms. Some research has shown that autistic children can have atypical immune-system reactions and brain patterns. New technology has made it possible to get a more precise look at the brain -- where scientists have observed inflammation or altered connectivity in some kids with autism -- but diagnosis is still made by clinical observation.
Researchers and parents continue to debate the cause of all of this. Most believe genes play a role. Beyond that, they don't agree whether the increase in cases is due to new diagnostic criteria, more awareness of the condition, exposure to pesticides, pollution, a mercury-based preservative in childhood vaccinations or immunological reaction to childhood shots. Some think it's a combination of all of these or that autism is not simply one disease, that it's many, with subgroups.
"We now say there are different types of autism," said Dr. Robert Hendren, executive director of the M.I.N.D. Institute. "There are regressive and non-regressive types, those with seizures and those without. New research and technology allow us to look at the brain and study genetic development. It will let us subtype autism."
Stories like Humza's provide anecdotal evidence of treatments that seem to work. In the absence of controlled studies, said Dr. Thomas Insel, director of the National Institute of Mental Health, the lead federal agency for research on mental and behavioral disorders, parents are left with "trial and error with your own child."
"The bottom line," he said, "is that we need a lot of better science to test out some of these things to see what is helpful and what is not. As it is, every parent is left to do their own clinical trial."
He and others say they worry about parents trying treatments that carry risks -- such as potential liver or kidney damage from chelation therapy some are using to rid the body of heavy metals -- or paying huge amounts of money for ones that don't end up working. Studies have already shown, Insel said, that extensive behavioral intervention with children as young as 2 or 3 results in substantial improvements in 20 to 25 percent of autistic kids.
But studies on biomedical treatments are slower to happen. "We've just been looking at behavioral cures," said Hendren of the M.I.N.D. Institute. "There are some families who feel that biomedical treatments do help the core symptoms. Good studies just haven't been done."
Scientists at some of the nation's leading research institutions are now studying dairy- and wheat-free diets and the use of supplements. Some parents feel they can't wait years for the results. Hendren said he sees families who say diet interventions made a big difference and others who report they didn't.
"The government now, because of our work, is saying that parents have lapped us on this," said Dave Humphrey, one of the founders of the Autism Treatment Network, a group of parents, advocates and researchers formed to set a "gold standard" for medical treatments and make them available to scientists, doctors, parents and policymakers.
"The most common thing we hear (from parents) is that after the diagnosis of autism, that's the last time a doctor sees my child," said Humphrey. "Usually, they are seen by a psychiatrist. Insurance won't cover medical intervention."
If there are medical treatments that help, say some scientists, perhaps autism is not -- as prevailing scientific thought now goes -- purely a brain disorder. Perhaps, said Dr. Martha Herbert, an assistant professor of neurology at Harvard University medical school and a pediatric neurologist at Massachusetts General Hospital, autism is best described by a model that includes brain, behavior and medical problems.
"It's important to remember that we're still trying to understand what this is all about," said Insel. "We're looking at it as a brain illness, but it can have to do with gastrointestinal illness. If we could just get a handle on what is wrong in the brain.''
Pain from chronic gut problems, many scientists say, may be motivating the outbursts associated with autistic behavior in children who don't yet have language. But there is no agreement about what causes the gut irritation. Some believe it's an allergic reaction. Others think wheat and dairy proteins are converted into a product -- which has similarities to drugs in the opium family -- that passes into the bloodstream and causes problems in brain function. Either way, said the M.I.N.D. Institute's Hendren, "the brain-gut connection (in autism) is not proven or disproven."
The argument over whether autism is a brain disorder may seem academic, but is intrinsic to finding a path to recovery, said Harvard's Herbert, whose research is funded by Cure Autism Now, a group that raises money for biomedical research and has remained neutral on the vaccine issue. She spoke recently at a meeting of the newly founded Autism Recovery Consortium, which she described as a "speedboat" compared with the Autism Treatment Network's larger, more conventional vessel.
But both are sailing toward a hopeful term used with more frequency these days -- cure. "You won't get any of the research you need if you assume autism is not curable," said Herbert.
A genetically determined brain disease might not be curable, she said. If it happens prenatally and is hardwired in the brain, then a cure might be impossible. But if the disease is seen as one that affects many systems in the body and is influenced by genetics and environment, a cure is plausible.
As for Humza, his UCSF pediatrician says his progress is "remarkable." "You won't find a more dedicated parent than Mrs. Iqbal," said Dr. Alan Uba. But, he said, he's not sure what created the improvement -- behavioral therapies, biomedical treatments or just the passage of time.
"I'd like to know what helps and who would do better" with which therapies, he said. "Clearly, there are areas where Western medicine fails a little, with chronic pain, cold symptoms and things like autism or pervasive developmental disorders. There are no guaranteed treatments. Parents want more."
A school psychologist who observed Humza in early October found he consistently paid attention in class. He asked questions and practiced independently in his handwriting workbook. He got along well with other kids and they appreciated him, she wrote. Overall, she concluded, his social and academic behavior was "appropriate when compared to his peers."
After the doorbell rang, there was the sound of bare feet from inside and the door opened. Humza stood in the doorway, then gently returned a handshake. He is a slender kid with an impish smile who, after a few seconds, extended an invitation to come in and sit down.
"My mom is coming. She's somewhere," he said, as Sara Iqbal arrived from upstairs. We started talking about what he likes at school -- P.E., especially a kickball game called Two Touch. And he loves reading -- "Charlie and the Chocolate Factory,'' "James and the Giant Peach" and "Matilda," although the author "doesn't use as much craft" in that one, Humza said.
"So, what else do you want to know about me?" he asked, leaning over and laughing at how he could not read the reporter's handwriting. Then he led a tour of his room, including a look inside his closet. "These are my clothes," he said. His 4-year-old sister shares the room, which is OK most of the time, he said, but she annoys him sometimes. "And this is the fan. It works by turning it on like this," he said, picking up the remote control. Then he quietly added that he might be getting a new, updated video game system. It might be coming soon.
Privately, his mother said later that her brother is bringing him one from overseas. It's a present to coincide with the screening of a public television documentary called "Finding the Words" that features a group of children who recovered, in varying degrees, from autism. Humza was the first to be interviewed and a chief inspiration for it. Just the night before, Sara Iqbal said, she'd told her son in detail how sick he'd been as a baby. She explained that he was a hero for fighting the disease and then she gave him the letter she'd written him when he was 2. He said he might want to see the film, but wasn't sure. He was sure, though, that other people should know how he got better. "I want to help other children," he told his mother.
A few days after that, Humza joined his classmates for a few laps around the school yard at the beginning of PE.
"Hey, I'm going to a movie premiere tonight," he said, walking next to his best friend.
"Cool," said his friend.
"There are kids in it who are, well, it's hard to explain," said Humza. "When I was little, something happened to my gut and I was able to recover and now I'm fine. So that's why I'm in this movie. It's about how miracles can happen."
"But what happens in the movie? You're not telling me what happens," said his friend.
"Well, I can't really explain. It's not a movie movie," said Humza.
Following PE, he headed for his classroom. It was time for math, where he now scores at an advanced level on standardized tests. On this day, the teacher was working on estimates. Humza volunteered to read aloud from a poem called "Hungry Mungry," jammed with numbers the teacher wanted students to tally. He stood in front of the class and read in a steady voice without stumbling, then returned to his seat to start his math sheet.
The school district supplies a part-time "special circumstance assistant" to help him in class, if needed. These days, Sam Gleason, one of the first therapists trained in Sara Iqbal's program, gives assurance, reinforcement and sometimes a small tap on the back to remind Humza to focus -- much the same as other fourth-graders need. But just as often he's off helping other kids because Humza is engaged in his own work or friends. Gleason once sweated over getting Humza, at age 2, to look at him or track a ball with his eyes. Today, he stands back and watches him run around the yard with his friends in a game of Two Touch.
That night, Humza did go to the premiere, held in the Presidio at the Golden Gate Club. His hair was neatly brushed. He wore a denim jacket and looked impressively handsome as he balanced a plate of vegetables and rice on his lap. Before the movie started, he wanted to know if there was going to be popcorn. But the only bowls near the door held small packets of Kleenex. He sat next to his parents and when he saw a picture of his family on the screen, he beamed. A half hour into the movie, he rested his head against his mother's shoulder and yawned. It was a late night for any 9-year-old.
