Isolated by Chaos
Lisa Everitt first noticed something awry with her son, Mark, when he turned three. An active and happy infant, he was becoming anxious and depressed. Doctors fingered Everitt’s looming divorce as the source of her son’s moodiness, but the Colorado mom suspected a more profound problem.
Her fear was confirmed when Mark started first grade. Overwhelmed by the chaos of the classroom, she says, he spent much of his time lying on the floor with his hands clapped over his ears. Not knowing where to turn for help, Everitt found herself immersed in a maze of medical jargon and misdiagnoses. “A string of people gave Mark the diagnosis du jour,” she says. “Everyone had an idea of what was wrong with him, and no two people agreed.” Over the next few years, she and Mark hopscotched from one doctor’s office to another. Then, when Mark was in fifth grade, a cognitive behavioral therapist correctly diagnosed him with Asperger’s syndrome. For the first time, Everitt felt like someone understood what she and Mark had been going through. “It was a huge relief,” she says.
Today, Mark is a sophomore in high school and learning what it means to be a typical 16-year-old boy. Like most children with Asperger’s, Mark is bright and articulate but socially awkward. “It’s never the academic stuff that’s a struggle for him,” says Everitt. “It’s more basic than that.” For instance, in the elementary school cafeteria, Mark would stuff his mouth full of food until he literally couldn’t swallow. “It was like he never learned how to chew with his back teeth. No one would sit with him at lunch because he shoved food into his mouth until he choked,” Everitt says. An occupational therapist spent three years teaching Mark how to chew his food.
But as soon as one problem resolves, another springs up to take its place. His Asperger’s makes Mark stand out from the crowd at an age when standing out isn’t cool. “Like many kids with Asperger’s, he’s just not interested in what other people think,” says Everitt. “That can be a good thing when people snub him or tease him,” but it can also be socially isolating.
Named after Hans Asperger, the Austrian pediatrician who identified the condition in 1944, Asperger’s syndrome falls on the high-functioning end of the autism spectrum. Autism spectrum disorders is an umbrella term covering a host of disorders, including classic autistic disorder, Asperger’s syndrome, and pervasive developmental disorder–not otherwise specified. Unlike kids with classic autism—often first signaled by a language delay—those with Asperger’s hone their language skills early and develop average or above-average intelligence. Mark began talking at 8 months and spoke in complete sentences before his first birthday.
Another clue of Asperger’s is a child’s near-obsession with a singular topic, such as Civil War battles or trading cards. Over the years, Mark’s obsessive tendencies have taken different shapes. Where once it was germs, now it’s video games. “It’s nice because he can be obsessive about video games and it’s status enhancing,” says Everitt. “Finally, it’s a place where he can show some expertise and other boys say ‘that’s really cool,’ instead of ‘that’s really weird."
But the most telltale sign of Asperger’s is a difficulty interpreting and relaying social cues. “Kids with Asperger’s have trouble with back-and-forth conversations,” says Judy Reaven, PhD, director of the Autism and Developmental Disabilities Clinic at the University of Colorado at Denver. They may struggle to use eye contact, facial expressions, and body language to convey feelings. As a result, they have a tough time making friends and empathizing with others. “These are really bright kids who happen to be socially awkward,” says Reaven. “People tend to misinterpret their behavior as stubborn or defiant when, in reality, they just don’t understand how the world works.”
Everitt knows all about people misinterpreting Mark’s behavior as defiant. A lot of her energy is spent keeping Mark’s teachers from labeling him as a discipline problem. Mark has one particularly troublesome quirk—a tendency to zone out when he gets fearful or nervous. “For a while he had a fear of English class, so he’d put his head down and go to sleep,” says Everitt. More recently, the fear pops up in gym class. Everitt describes how Mark disconnects from the class by hiding behind the bleachers, a move that irritates the teacher but makes perfect sense to a mom who knows the ins and outs of his condition. “I’m sure there is some cool stuff back there,” she says. Up until his freshman year, an aide helped Mark navigate through the day, waking him up if he fell asleep in class and generally helping to keep him on track. But eager to experience more independence, he decided to start high school on his own.
Unraveling the puzzle
As a diagnosis, Asperger’s syndrome is still in its infancy. The American Psychiatric Association didn’t even recognize the disorder until 1994, and researchers are still scrambling to understand the basics. For instance, scientists know that Asperger’s affects four times as many boys as girls, but they don’t know why. Similarly, a child’s risk of having the disorder is higher if his father or sibling has Asperger’s, leading researchers to think that the condition has a genetic component, although they have yet to isolate the gene’s location. The fact that Asperger’s has become more common only compounds the mystery.
For simplicity’s sake, the US government lumps Asperger’s with all autism spectrum disorders when tracking the number of cases nationwide. Last February, the Centers for Disease Control and Prevention estimated that 1 in 150 American children has an autism spectrum disorder. That means that 26,670 of the 4 million children born this year will eventually be diagnosed with an autism spectrum disorder, including Asperger’s. That number has marched steadily upward over the past two decades, but no one knows if the increase means the disorder is becoming more common or simply reflects a growing awareness of the condition.
The difficulty of diagnosis
Unlike classic autism, an early diagnosis of Asperger’s is nearly impossible since infants and toddlers with the disorder progress lockstep with their peers. Asperger’s often manifests as an inability to connect socially with others, so it’s not unusual for a diagnosis to come after a child is in school and experiencing problems fitting in. Even then, an accurate diagnosis can take time.
Some experts estimate that up to 50 percent of children with Asperger’s reach adulthood without ever being evaluated, diagnosed, or treated. A practitioner who isn’t familiar with Asperger’s might mislabel a child as anxious or depressed, says Reaven. “Families get bounced around a lot.” The key, she says, is finding a practitioner familiar with the signs of Asperger’s or autism spectrum disorders.
When it comes to diagnosing Asperger’s, Jared Skowron, a naturopath in Hamden, Connecticut, looks at what he calls the four S’s: speech, socialization, sleep, and sensitivities. Children with Asperger’s wrestle with two or more of the four areas, he says. For example, speech often shifts from normal to a monotone litany of facts (some children with Asperger’s sound like little professors); socially, making friends can prove tough; sound sleep gets disrupted; and overreacting to basic touch, sounds, or other stimuli is common. Even with these touchstones, Asperger’s is far from black and white.
“The diagnosis right now is up to the subjective interpretation of the practitioner,” he says. “There is no lab work that says, ‘Here’s Asperger’s.’”
A patchwork of treatments
While no one knows exactly what causes Asperger’s, the most credible theory points to an imbalance in the brain’s chemical messengers. Exposure to toxins, viruses, or immune-system irritants may cause the brain to overproduce neurotransmitters—its chemical messengers— which makes the brain go faster than normal, explains Skowron. “The faster the brain goes, the less you want to sleep, the greater your stress response, and the more you’ll want to be alone,” he says. “That’s why these kids freak out. They get overwhelmed with signals from the outside world.”
The thinking goes like this: Whereas lots of stimulus is needed to fire nerve cells in the brains of “normal” children (consider the bright colors, noisy games, and fast-moving videos children love), the nerve cells in the brain of a child with Asperger’s need very little stimulation to fire. Therefore, ordinary things can be alarming. Skowron explains how the touch of a tag in the back of a T-shirt is imperceptible for most kids but can drive a child with Asperger’s to distraction. “It’s as though these kids are in a constant state of panic,” he says. Skowron also explains how the panic sets off a hormonal cascade, which affects everything from the digestive system and immune function to the skin.
As the nerve-cell theory gains ground, treatments for Asperger’s lean toward soothing children’s frazzled nervous systems both internally, through foods and supplements; and externally, through minimizing noise, light, and chaos.
Deciding what’s best for a child with Asperger’s causes passionate debate among parents and practitioners alike. While Western medicine is quick to recommend drug therapy, alternative practitioners have developed a litany of mind-body approaches. At the end of the day, when it comes to putting a treatment plan together, Reaven tells parents: “Trust your instincts; if it doesn’t feel right, don’t do it.” While a definitive guide to treating Asperger’s may not exist, some tried-and-true alternatives certainly do.
THE DIET SOLUTION
What is it? Children with Asperger’s have many food-
related problems. Some parents report that their son will only eat potatoes in his room alone, at 4 p.m. every day—no exception. Others discover that their child eats really slowly, often forgetting what he’s doing or making a huge mess at the table. Asperger’s kids may be extra sensitive to environmental toxins or have significant food allergies. Casein (from milk products), sugar, corn, soy, and gluten (from wheat) are the usual suspects. Preliminary studies have also shown a connection between Asperger’s and candida (an overgrowth of yeast in the gut). Since food allergies are so common, Skowron believes an elimination or a gluten-free, casein-free diet (GFCF) is worth a shot.
How does it work? Just like it sounds, an elimination diet blackballs specific foods that may contribute to a health problem. The argument against trigger foods (like dairy, wheat, gluten, and corn) states that they goose the brain into releasing opiate-like chemicals that make it difficult for children to focus. Theoretically, by cutting out these foods, children can slow down and pay attention.
Proponents of the elimination and the GFCF diet also claim these foods inflame the gut, which disrupts digestion and slows the absorption of vitamins and minerals. This, in turn, leads to an overgrowth of bad bacteria and yeast, which can contribute to or further aggravate the digestive woes plaguing many Asperger kids.
How to get started? Doctors and parents alike recommend organic, hormone-free foods as a good baseline. Then have your child tested for food allergies (both an IgG and an IgE test are necessary); yeast overgrowth (ask for a peptides test from a lab such as Great Plains—greatplainslaboratory.com—or Great Smokies—gsdl.com); and parasites to see what he is up against. If you want to try the elimination diet, Skowron recommends giving it at least two months—and be patient. Sometimes symptoms get worse before they improve. Because children with Asperger’s can be very strong-willed and loathe to try new foods, he recommends that the entire family go on the diet so your child doesn’t feel singled out.
Tip: Don’t eliminate casein and gluten at the same time. Start by giving up milk products—cheese, milk, whey, butter, and yogurt—for two weeks. Learn to read labels and look for caseinate in nondairy products, too (it even shows up in hot dogs and soy cheese). Then introduce gluten-free foods. Try to mimic your child’s favorite foods, replacing them with the GFCF variety. For example, if he loves waffles, buy the frozen GFCF kind (or make your own) and serve them with organic, real maple syrup. It’s important to learn to pay attention to nonfood sources of these offenders, found in sunscreens, toothpastes, some over-the-counter drugs, shampoos, and laundry detergent.
For even more tips for a successful elimination diet, including more ways to substitute gluten- and casein-free foods for your child’s favorite meals, check out naturalsolutionsmag.com.
What are they? Some dietary supplements are thought to boost the function of the brain’s chemical messengers and, therefore, help children with Asperger’s. The nutrients most thoroughly studied for the treatment of autism spectrum disorders include vitamin C, folic acid, magnesium, DMG (dimethylgycine), vitamins B6 and B12, and omega-3 and -6 fatty acids.
Skowron has formulated his own supplemental blend that, he says, puts the brakes on the runaway nervous system of children with Asperger’s and autism. “If we can slow down the nervous system, we can slow down the stress response and improve digestion.” Called Spectrum Awakening, the supplement includes folic acid, magnesium, zinc, selenium, vitamins B and E, amino acids, and other nutrients. Although results of a clinical trial are pending, Skowron sees improvements in his patients who swallow the blend, including reduced sensitivities and better sociability.
What’s the evidence? Some of the best evidence points to DMG. Two small, double-blind, placebo-controlled studies of DMG for autistic children showed a marked improvement in behavior. Some evidence has emerged to support digestive enzyme use. Protease enzymes, in particular, help children digest casein, gluten, and soy. And in a small clinical trial, a combination of omega-3s from fish oil and omega-6s from borage oil improved language and learning skills in children with Asperger’s.
Tip: Check with a naturopath or a holistic nutritionist before supplementing; she can help you decide which enzymes and other supplements are right for your child’s digestion. If your child is on an dairy-free diet, you’ll want to supplement with calcium and magnesium. Be prepared for trial and error.
COGNITIVE BEHAVIORAL THERAPY
What is it? A therapeutic approach that focuses on problem solving in the present rather than digging up the past, cognitive behavioral therapy (CBT) may help children with Asperger’s who are plagued by social anxieties. A therapist often works one-on-one or in groups to help children master basic social skills as well as curb antisocial behaviors. Mark responded very well to CBT, says Everitt. She describes how her son’s anxieties used to cause him to fly off the handle, suffering a complete meltdown out of anger or sadness. During CBT, his therapist not only taught him how to disarm his fear, she put him in a group for kids who suffered from similar anxieties and talked about how to handle their fear. “That was a blessing,” says Everitt.
What’s the evidence? The success of CBT is mostly anecdotal; however, a recent study published in the journal Focus on Autism and Other Developmental Disorders is lending support to the approach. Researchers enrolled 21 boys with Asperger’s in a six-week program. The kids spent six hours a day, five days a week working on social skills such as making eye contact, introducing themselves to new people, and playing in groups. At the end of the study, parents saw significant improvements in their children’s social skills.
Tip: Reaven recommends seeking a cognitive behavioral therapist who specializes in anxiety disorders and is willing to consult on the intricacies of Asperger’s with your healthcare practitioner.
SENSORY INTEGRATION THERAPY
What is it? A form of occupational therapy, sensory integration (SI) therapy helps children with Asperger’s interpret outside stimuli. Clare Summers, an occupational therapist at The Children’s Hospital in Denver, does sensory integration therapy with children with Asperger’s. “These kids are high-functioning but often lack body awareness and social skills, so we work on things like improving hand-eye coordination and teaching them how to join in playground games,” she says.
What’s the evidence? Sensory integration doesn’t lend itself to clinical trails and, therefore, isn’t well studied, but occupational therapists and parents alike say many children with Asperger’s respond well. Summers sees a decrease in self-stimulating behaviors (like arm flapping) and an increase in ability to focus and tolerate being in a social group.
Tip: Look for an occupational therapist with training in sensory integration therapy.
What is it? Music therapy is based on the notion that the early communication between mothers and infants is musical in nature. Proponents believe babies are sensitive to the pulse, tempo, rhythm, and timing of their mother’s speech, and that music can enhance nonverbal social skills in Asperger’s kids.
What’s the evidence? In January 2006, the Cochrane Collaboration, an international nonprofit organization that independently reviews healthcare treatments, critiqued the three best studies to date on music therapy as treatment for autistic spectrum disorders. In all three, children who received music therapy showed increases in both nonverbal and verbal communication skills. The authors suggest that music therapy is superior to similar interventions where music isn’t used.
Tip: To find a qualified music therapist in your area, contact the American Music Therapy Association at musictherapy.org.
What is it? A rather controversial treatment, chelation therapy rids the body of heavy metals, particularly lead. During chelation therapy, children are given large doses of chemicals, called chelators, either orally or intravenously. The chemicals grab onto heavy metals and escort them from the body via urine. Two common, conventional chelators are EDTA and DSMA (short for ethylene diamine tetraacetic acid and dimercaptosuccinic acid, respectively). Natural chelators, such as mud baths, fiber supplements, and antioxidants, are also popular.
What’s the evidence? No scientific evidence supports either natural or conventional forms of chelation for the treatment of Asperger’s or any autistic disorder. Regardless, many practitioners, including Skowron, and parents believe chelation is a worthwhile therapy because of the potential link between Asperger’s and exposure to heavy metals, such as mercury. Says Skowron, “The No. 1 thing you can do for Asperger’s is to detoxify.”
Tip: If you want to try chelation therapy, look for a practitioner who uses natural, oral chelators. Intravenous chelation can damage the liver and kidneys and strip the body of essential nutrients, such as calcium and electrolytes. “Natural methods work slower than intravenous methods, but they are a lot safer,” says Skowron, who sticks to herbal detoxifiers such as milk thistle.
Piecing together a future
As scientists continue to unravel the facts about autism spectrum disorders, particularly in the field of gene therapy, the future looks promising, says Skowron. Today, the most important thing parents can do for themselves and their children, he says, is to find an advocate, ideally a health practitioner who specializes in either Asperger’s or autistic spectrum disorders. “You need someone to walk you through the overwhelming maze of options, someone who can be objective, someone who can help you evaluate what’s working and what’s not,” he says.
Over the years, Lisa and Mark Everitt have found several advocates who’ve offered advice and expertise as they experimented with various treatments. Some therapies helped and others didn’t, but the mother and son learned a lot along the way and have settled into a groove that works for them both. “I try to just meet him where he is,” she says. “I love him and teach him what I can about the world.”
Catherine Guthrie is a health writer based in Bloomington, Indiana.