Goldfish cracker crumbs in your car are the telltale sign that you have young children in your life. For the Thompson family, however, the smiling orange fish might as well be extinct. The Thompsons are treating three of their five children for autism, relying on a wheat-free diet.
After a year and a half of dietary deprivations and vitamin supplements, they are thrilled with the results.
"We had a fiesta in October to celebrate the progress that all three of the children have made," Jennifer Thompson says. The party helped the family focus on what's now missing from their lives but should not be forgotten, like 5-year-old Addi's screaming fits or the way 6-year-old Taylor used to kick and flail. Behavioral problems still preclude Taylor from regular kindergarten, but for one hour during his special education day, he visits his twin brother Spencer, who qualifies for the mainstream class.
For the Thompsons, years of frustration and worry began when the twins were toddlers. Physically, they were robust, but their speech was delayed. Their pediatrician counseled them that sometimes boys talk later. By 2 and a half, the twins could climb out of windows and over fences, but still had few words. Taylor developed a troubling, glassy-eyed look. The boys were admitted to their township's public preschool for children with developmental delays. There, they found help and a diagnosis: autism.
Defeat Autism Now
Fifty years ago, Bruno Bettleheim blamed autism on "Refrigerator Mothers," women so cold and distant, he said, that their children retreated to a protective inner world. His often-hurtful theory has long been abandoned, but parents are still frustrated by the lack of a known cause. Autism is a neurological disorder that appears in early childhood and impairs communication and social skills. Children are typically referred for educational services and behavioral therapies. When someone recommended the Thompsons get a "DAN" -- Defeat Autism Now -- doctor, they decided to take a chance.
The Thompsons found Dr. Mary Lou Hulseman of Fall Creek Family Medicine -- one of only two Indiana medical doctors registered with Defeat Autism Now, a national organization that advocates "biomedical" interventions. Diet is at the core of the DAN protocol, which rests on the theory that autistic kids have a higher rate of gastrointestinal issues, such as diarrhea or constipation. The problem, they say, may be a "leaky gut," in which certain proteins leak out of the intestine, act like an opiate in the body and hurt brain development.
Hulseman's patients usually start with the Carbohydrate Specific Diet (mostly meat, legumes, fruit and veggies) or the Gluten Free-Casein Free Diet (no wheat or dairy products allowed) for three months. Success of the diet is measured by improvements in the child's health, behavior and speech, as observed by the parents and caregivers. Then, parents may reintroduce foods one by one and watch for any changes, or regressions to old behavior.
"It's one of the most difficult things I have ever done," says Thompson of the CSD. "You have to monitor their snacks. We couldn't go to church functions -- Taylor was too good at the snatch and grabs." After a year and a half of dietary trial and error, the Thompsons identified a peanut sensitivity in Taylor and fish sensitivity in Addi. All the kids eat dairy now, but they remain wheat-free.
The biomedical approach also includes numerous non-dietary interventions, from fish oil to B12 shots. Some parents try the antifungal medications meant to release excess yeast from kids' systems. Others try chelation to remove heavy metals, based on the theory that autistic kids aren't able to excrete environmental toxins, such as lead and mercury. Some parents choose to delay vaccines, believing that their kids' immune systems are compromised. Hulseman also believes that hyperbaric oxygen treatments can help some autistic kids by reducing oxidative stress. Treatments vary from family to family, depending on blood and urine test results, observed changes in each child and, sometimes, on the parents' willingness to "see what works." They stick with what works, drop what doesn't and move on to the next thing.
"There are so many things that parents try," explains Laura Rowley, who has three children under Hulseman's care. "They're all part of the recovery puzzle, every kid needs a different mix." Rowley credits the GF-CF diet and hyperbaric oxygen treatments for their family's successes. "I have no doubt that if we didn't start, we would have three severely autistic kids." Her oldest, 11-year-old Bryce, is still non-verbal and receives hours of behavioral therapies each week. His two younger siblings, who had displayed autism symptoms previously, are indistinguishable from their peers, she says.
Parents who see improvements with Hulseman's methods don't seem phased by the wide selection of treatments or the variability in effectiveness. Perhaps they are accustomed to variability, because autism encompasses such a wide range of symptoms and levels of impairment. As one parent told me, "If you've seen one kid with autism, you've seen one kid with autism."
On one end of the autism spectrum is the nonverbal child with limited eye contact, repetitive mannerisms and obsessive behaviors. On the other end is the child with Asperger's Syndrome, fully verbal yet challenged by social interaction. Some children have tantrums, while others could pass hours quietly watching spinning wheels. Still others do well in school, but can't navigate the intricacies of taking turns on the playground.
Is it science?
No doubt, these families' struggles are huge and their successes inspirational. But are they science? Parents who embrace the biomedical are adamant about cause and effect. For the medical community, however, parental testimonies can't replace the double-blind placebo clinical trial.
"If you look at large scale studies, there is no link between vaccines and autism," says Dr. Craig Erickson, an assistant professor of psychiatry at Indiana University's School of Medicine. Neither is there a real increased rate of GI problems in autistic kids, and nothing in medical literature supports the toxin theory, Erickson says. More studies are needed to determine a baseline for toxins in the body. When "normal" is in the eye of the beholder, he says, anything can be deemed abnormal. He believes that the largest factor in the increased rate of autism is increased detection, and especially the inclusion of children who have a milder form of the disorder.
"I will say," Erickson concedes, "that if you line up 20 individuals with autistic disorder, the root cause can be different for each." He counsels parents to see their doctor about any GI problems, but not to assume that autistic kids will have them. In the biomedical approach, he worries most about chelation, which presents small but very real risks to the patient.
"This is good medicine," Hulseman says, citing four studies that support the leaky gut theory. Though pro-vaccine, she favors spreading out vaccines for autistic kids and their siblings. She would like to see more biomedical studies done, but laments that "Studies that get into doctors' journals tend to be those supported by pharmaceutical industries."
Hundreds of studies have verified the effectiveness of one autism treatment and it doesn't involve pharmaceuticals or diet: Applied Behavioral Analysis. As explained by Dr. Naomi Swiezy, clinical director of the Christian Sarkine Autism Center at Riley Hospital, ABA is more philosophy than treatment. It's an individualized, data-driven approach to analyzing a child's behavior, reducing negative ones and improving communication skills. Certified therapists work one-on-one with a child to re-frame problems like aggression into solutions, by teaching the child how to adapt to his environment. They also train parents and educators to apply ABA around the clock.
Swiezy has seen children in ABA go from being hospitalized to being in mainstream education classes, but she makes no promises about individual results. "We encourage families to set the bar and continually raise it," she explains. "It's a slow progress. We don't expect a cure. We treat the symptoms."
Biomedical families say they are treating symptoms, physical symptoms. With physical ailments healed, they have seen children do better in behavioral and educational therapies. Hulseman is looking forward to research on the effect of combining biomedical interventions with ABA.
Hulseman refers to studies underway at Thoughtful House, a medical and research facility in Texas founded by Dr. Andrew Wakefield, the same British doctor who published the now discredited study linking autism to the MMR (mumps-measles-rubella) vaccine. Wakefield's 1998 study of only 12 patients caused a furor among parents who blamed autism on vaccines and still more who refused to have their children vaccinated. Scientists have cried foul, because of its small size and conflict of interest: Wakefield had his own vaccine to patent and received major funding from personal injury attorneys suing vaccine makers. Today, Wakefield stands accused of professional misconduct by Britain's General Medical Council, which reports that most of the children studied had symptoms before their vaccinations and had no gut problems at all, although the study claimed they did. Just last month, the U.S. Court of Appeals ruled that vaccines are not to blame for autism, denying more than 5,500 claims seeking federal compensation.
Despite Wakefield's seeming fall from medical grace, parents and doctors continue to debate which studies are best -- in the pediatrician's office, in the blogosphere and on book tours. In his 2008 book, Autism's False Prophets
, vaccine expert and patent holder Dr. Paul Offit defends a rigorous scientific process that includes large clinical trials and reproducible results. No, he says, Mom doesn't know best. He likens past autism treatments once regarded as sure cures (like the use of pig hormones) to snake oil, and warns families not to waste their time, energy and money on unproven treatments.
Meet the Hamptons
The Hamptons, a family that has never met Hulseman, personifies the debate over autism treatment. Lilly is an educator. Her husband Bill is a child psychiatrist. Part of his job is to prescribe anti-psychotics for autistic children with severe anxiety, aggression or self-injurious behavior. Their 10-year-old son Timmy has autism. He asked us to change their names, because he doesn't feel autistic.
As a toddler, Timmy didn't talk and never (ever) slept all night. He lined up his toy cars instead of playing with them. He color-sorted his refrigerator magnets. After diagnosis, their pediatrician admitted to the Hamptons that they were teaching him about autism. They tried almost everything. They tried the GF-CF diet to no effect. They gave Timmy ABA, verbal therapy, music therapy, hippotherapy (using horses) and speech therapy (which they both credit for his ability to speak today). Bill even assented to a homeopathic remedy called Heilkunst, which Lilly believes brought huge gains in Timmy's ability to talk, read and sleep.
"Talk about a miracle," says Lilly of the sleep gains. "My husband would say, 'It is the power of suggestion and a placebo effect.'" Today, Timmy stands out in his fifth-grade class as a talented mathematician. What does his doctor dad think worked?
"Timmy was someone for whom people matter," Bill reasons, "since he was very young and forming relationships with his therapists. I think that is what helped him. He was 'buying' what he was doing. It was mutually enjoyable."
Bill combines personal observation with scientific research to come up with a theory about how the biomedical approach might work. He refers to a study of occupational therapy techniques used for autistic children, which concluded that what was responsible for improvement was the time spent in interaction as opposed to the particular technique. "You have to wonder," Bill suggests gently, "if it's the amount of interaction that's responsible for the improvement. What may work is all the attention [the children] are getting from their caregivers, making the interaction they have with people enjoyable and therefore worth pursuing."
Bill's words may resonate with parents across the autism spectrum, whether they swear by the biomedical or behavioral approach. They are all reaching into a child's territory and asking him to join them in their own. And when it works, by whatever method, it feels right.