Speaking Eric's Language: Mother and Autistic Son Struggle to Understand Each Other by Page E. Bishop Published: June 2006 Four-year-old Eric Woodard and his little brother, Chase, run noisily around the living room of their cozy brick home. Shouts of glee fill the air as the boys take turns jumping on a tiny trampoline. A cartoon on the television set adds to the commotion. Eric, now out of breath, runs up to his mother and tugs on one of her denim-clad legs. Wild blond hair spills over his cherub-like face, which suddenly becomes clouded with anxiety – a look that his mother, Kari Higginbotham, recognizes immediately. Eric begins humming loudly. He speaks, his language nonsensical. Clearly something is bothering him, yet he cannot express the source of his anxiety. Letting go of Kari’s leg, Eric runs into his bedroom and reaches for a black three-ring notebook. Inside are laminated pictures of objects. He tears one small square from its Velcro tab and places it in his mother’s hand. The card contains a picture of a hot dog. Kari knows her son is ready for lunch. Unlike most children his age, Eric cannot verbally communicate. His limited vocabulary consists of only 15 to 20 words – about the same number he could speak at 18 months of age. “He had developed normally until that point, walking at nine months and showing many early milestones compared to other children,” says Kari. But after 18 months of normal development, Eric's sudden strange behavior puzzled Kari and contradicted his early progress. Seizure-like episodes and spastic motions preempted his communicative decline. His verbal skills regressed to mere gestures and inarticulate babble. MRI results came back normal, but Kari knew there was nothing normal about her son’s behavior. Kari and four-year-old Eric play soccer in their backyard. Kari is now the program director for the Chesapeake branch of TOPS, a soccer program for special needs children. After visiting several child psychologists, Eric was diagnosed with infantile autism. But, apparently, there was never a concrete diagnosis. While Eric displayed many characteristics of autism, it was unclear where he stood on the spectrum of autistic disorders. His need for rigidity and sameness fits the autism stereotype. He functions well in a set routine, but if that routine is somehow disrupted, he’s likely to have an emotional meltdown. “Once Eric knows something is supposed to happen, then it better happen,” says Kari, now a stay-at-home mom. “He needs structure. He has to be able to plan his day accordingly. To complete a task, he must know all of the steps beforehand.” Resistance to change isn’t the only behavioral characteristic that places Eric on the autism spectrum. He’s easily agitated by small inconveniences and fascinated by inanimate objects. Often he is more attentive to the straight edge of his notebook than another person in the room. He prefers to be alone, and interactions with other children, including his brother, are often strained. Unable to tolerate loud noises, such as a large crowd, he wears a set of special headphones to block out stress-inducing sounds. “If Eric is bombarded with too much sensory information, then he will explode,” Kari explains. Eric doesn’t usually make eye contact with others. He uses his peripheral vision to take in a social situation, and as Kari describes, he looks at people with “sideways vision.” The need for rigidity and regularity doesn’t stop Eric from getting bored quickly. He’s easily distracted and has trouble remaining focused, especially during school hours. Recognizing her son’s obstacles to learning, Kari attempted to enroll Eric in a speech therapy program offered through the public schools. She was told he didn’t qualify for the program because it was reserved for children with articulation problems. “He doesn’t speak!” Kari remembers shouting to a voice on the other end of the phone. At that point Kari realized the opposition she was up against: Parents of autistic children face incredible obstacles in their effort to protect the welfare and education of their children. “Autism is something that a lot of parents are in denial of,” she says. “At first my motherly instinct said, ‘Not me. Not my child.’ But once I came to terms with the diagnosis, which was very quickly, I realized that it’s not about me, or what I want. It’s about him. I love my son, and I will not let him flounder.” Today, therapist Judy Lambert, who specializes in working with autistic children, spends her afternoons with Eric and Kari at their Chesapeake home. After meeting through a mutual friend at the local social services department, Judy and Kari developed a solid plan for Eric’s future success. By replacing occupational therapy with a “sensory therapy” approach, Judy is helping Eric to slowly rebuild his vocabulary and she’s teaching him to cope with social situations. “Eric has the intent to communicate,” says Judy. “He just can’t get his ideas across. Right now, he talks through his notebook, which he takes everywhere, even to school. Instead of words, he uses the Velcro tabs to communicate. He can be sure to get someone’s attention by bringing them the appropriate card.” Eric also receives joint-compression therapy, a technique made famous by animal psychologist Dr. Temple Grandin, wherein one wears a weighted vest for a period of time. This method of therapy has a calming effect on both animals and humans. Grandin, a 44-year-old autistic woman, applied compression therapy to herself as an adolescent and later applied the theory in her designs of cattle and livestock chutes, the conveyer belts used to deliver animals into a slaughterhouse. Grandin’s self-professed obsession with cattle chutes is an example of how, with the right motivation, an autistic person can turn a fixation into a meaningful career. Her breakthrough research in the field of autism has helped the world better understand this condition and the people who struggle with it. Her many articles and books include An Inside View of Autism, Emergence: Labeled Autistic and Animals in Translation. Judy’s time with Eric is producing noticeable results. He follows a schedule and he is able to perform daily activities with relative ease. His behavior problems have subsided and his performance at school is improving. He is now speaking a handful of words. “Eric now has a sense of duty,” says Kari. “Before Judy came into the picture I couldn’t control him. Of course he’s still uncontrollable at times, but he is getting the basics down. He’s learning about self-control .” And while he displays many of autism's defining characteristics, Eric shows one personality trait that was once inconsistent with autism. It’s a trait that gives Kari a renewed sense of hope for her little boy’s future: Eric is affectionate toward others. In the early years of identifying autism, it was believed that persons with this condition were not capable of expressing love or sympathy for others. Essentially, they were thought to be void of normal human emotion. Austrian-born psychiatrist Leo Kanner first described the disorder as “a spectrum of conditions” in his 1943 paper titled Autistic Disturbance of Affective Contact. He mentioned disregard and disinterest for others, as well as the inability to relate to people, as characteristics that could point to an autism diagnosis. The term autistic was actually taken from the Greek word autos, which means “self,” and implies that a person with autism is self-absorbed. Eric’s affection toward Kari, Chase and Judy, and his general interest in other people, may be one indicator of a milder form of an autism spectrum disorder, known as Asperger’s syndrome. According to child psychologist Marnee Colburn, whose in-depth look at ASD (page 18, continued on page 20) explains many of the characteristics of the spectrum, many children with Asperger’s syndrome become independent adults capable of meaningful relationships and successful careers. “He is such a loving child,” adds Kari, describing the “brotherly love” between Eric and Chase. “He just wins everybody’s heart.” While he’s busy winning hearts now, Eric may soon be winning soccer games. Searching for an outlet for her son’s energy, Kari thought soccer would be an ideal match. To her dismay, there weren’t any programs locally for special needs children. A telephone inquiry led Kari to assume a position she never imagined: She’s now the program director for a Chesapeake branch of The Outreach Program Soccer, or TOPS, a national youth soccer league for children with disabilities. Expecting only eight participants at the first gathering, Kari was shocked when 25 children and their parents – the size of a classroom – showed up on the field. She had vastly underestimated the number of autistic children in her immediate area. That’s not very hard to do, though, considering that just 10 years ago one in every 10,000 children was diagnosed with an ASD. Today, the number is one in every 166 children. What lies behind this sudden surge in the number of children diagnosed with autism each year? Why are other countries, such as China, experiencing similar rises in the number of cases reported? Some say there is no clear explanation, or that environmental conditions are to blame. Another theory is that more children are simply getting a correct diagnosis, adding to the prevalence of cases. But if this is true, as some have suggested, where are all the 50-year-old autistic persons now? Many believe there is a link between vaccines and autism. Thimerisol, a preservative first used in many childhood vaccines first during the early 1980s (and, in some countries, still used today), is a mercury derivative that appears to coincide with the steep rise in autism around the globe. Kari considers the possibilities every day. She’s still searching for a cause, a trigger that could have caused her son’s autism. She believes thimerisol could have been the smoking gun. It’s too coincidental that Eric’s strange behavior began after he received the standard MMR (measles-mumps-rubella) shots, a series of shots known to contain traces of thimerisol. “Right now I’m trying to decipher what to believe,” says Kari. “My child develops normally, then stops talking overnight. How can you explain that?” When a family physician performed a hair follicle test, Kari says the results showed that Eric’s toxic elements were “off the charts.” But when she took that data to a local pediatrician, he dismissed the results as “insignificant.” “I don’t know what I’m looking at,” she remembers being told. When Eric was due for his second series of shots, Kari refused immunization for fear they might contain thimerisol. Instead, she asked for thimerisol-free versions. Costing nearly $200 out-of-pocket (per shot), Kari says she simply could not afford the “safer” vaccine. “A thimerisol-free vaccine is not accessible to me,” she says quietly. “I just can’t pay that amount out-of-pocket.” Eric, who turns five in September, has not received his four-year shots. Two-year-old Chase appears to be developing normally, but Kari says she worries that he too could regress. She watches him closely, searching for signs of a problem. But it’s hard for her to know what behaviors are normal. “I know what to expect from Eric,” she says, “But Chase is still vulnerable. He looks up to his older brother…mimics him at times. Sometimes I read too much into his normal toddler behavior.” As of now, Chase has not received his MMR vaccine. Brothers Eric (right) and Chase (left) play on the swingset outside their Chesapeake home. Though Kari remains optimistic for the future, she says she’s accepted the possibility that Eric may have to stay under her care forever. Many people with autism can live independently, but there is always a chance that Eric won’t make that transition. “I’ve had to change my life to fit his lifestyle,” she says, as she holds her son close, smoothing wisps of blonde hair from his face. “But I am okay with that. My goal is to ensure that he’s able to function in society…to live as independently as possible. As much progress as he’s making now, I think he’s going to get there.” “We all have high hopes for Eric,” says Susan Van Horn, Kari’s mother, who lives nearby and who has taken an active role in Eric’s care since his infancy. “ I know my daughter is well-equipped and well-informed about the available resources for parents and kids. She’s doing everything in her power to help him succeed.” When it comes to raising a child with autism, every parent must do what he or she considers best for that child. Reaching out to family and community resources takes courage. Kari’s mission to understand her son’s world has given her a sense of duty and personal fulfillment. She is an advocate for her child and embraces her newfound role as a soccer coach for a group of special needs children. Her relationship with her parents is stronger than ever, and she’s thankful for the emotional support they provide. “I don’t know what I’d do without them,” she says, refering to her mom and dad. Turning her gaze to Eric, she adds, “I don’t know what he’d do without me.”

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