Asperger's Syndrome

This chapter will challenge you to see your child’s life as worth celebrating, while motivating you to make more dynamic parenting choices. You will learn that accepting and valuing children with special needs is the first step toward becoming a healthier special needs family and that a combination of hard work, a family’s determination, early intervention, and unconditional love will lead to brighter futures for most children, regardless of their diagnosis.

Dealing With Autism #1
The Perfect-Baby Dream
Some men see things as they are and ask why. Others dream things that never were and ask why not. —George Bernard Shaw Welcome to Chapter One: The Perfect-Baby Dream. You are beginning an amazing journey filled with unexpected challenges and incredible rewards—gifts you cannot begin to understand when you first start walking down this demanding road. Parenting a child with special needs will be the greatest challenge of your life, and if you make good choices, it may also prove one of the most rewarding. Unfortunately, too many people feel sorry for these families and believe their children lack value or need to be fixed. Prevalent and outdated stereotypes of special needs families are fueled in part by ignorance, and in part by society’s obsession with human perfection and physical beauty, including for children. You can help change those stereotypes. This chapter will challenge you to see your child’s life as worth celebrating, while motivating you to make more dynamic parenting choices. You will learn that accepting and valuing children with special needs is the first step toward becoming a healthier special needs family and that a combination of hard work, a family’s determination, early intervention, and unconditional love will lead to brighter futures for most children, regardless of their diagnosis. Beginning with this chapter, you will benefit from the guidance of those who have walked in your shoes. By sharing their stories, these experienced parents will help you learn how to embrace your challenging new role. They have been where you are right now, and they know what lies ahead. Their words will inspire, motivate, and energize you and give you hope. The information included in this chapter and others won’t change the reality of your child’s special needs diagnosis. But it may help change how you perceive and respond to those needs. That’s a powerful shift in thinking. So let’s begin this journey together with a story from a real-life expert—the mother of two children with Asperger’s Syndrome.

A SUCCESS STORY
Annie Lewis’s spirit of adventure began long before she became the mother of two children with Asperger’s Syndrome, a role that today often defines her. The forty-eight-year-old mom was a ski patroller in Aspen, Colorado, a millionaire’s nurse, a chef in a five-star restaurant, and Cher’s maid. Amid the beauty and pristine air of the Colorado Rocky Mountains, Lewis also trained relentlessly, pursuing her dream of biking across China and Europe with her husband, Mark Pullano. As an athlete, she was used to pushing herself to the limits of physical and mental endurance. But Annie Lewis couldn’t train hard enough for autism. “Autism is a broad spectrum, neurological disorder,” Lewis, a nurse, explains. “That means people with autism vary in their abilities and exhibit an entire range of intelligence, responsiveness, and social functioning, from mild to severe.” To the layperson, that means everything from the familiar stereotype of someone rocking in the corners, seemingly oblivious to the world around them, to a child who bites classmates and is obsessed with trains. It can also mean someone with the ability to work with and influence millions of people through impressive life achievements. Lewis’s sons both have Asperger’s Syndrome (AS), a form of autism found in high-functioning children and adults, who exhibit some but not all tendencies of autism. Her thirteen-year-old son, Gregg, was diagnosed with Asperger’s Syndrome at age four. His eleven-year-old brother, Max, was diagnosed with AS when he was six years old. Lewis says that all individuals with autism exhibit three key tendencies: impaired socialization, impaired verbal or nonverbal communication, and restricted and repetitive patterns of behavior. “One of best definitions of autism I have ever read is morbid selfinterest,” she adds. “The one trait universal to all people with autism is the inability to ever see the point of view of another person.” The incidence of autism in the general population is 0.2 percent, but Lewis says the risk of having a second or additional child with autism jumps to nearly 10 to 20 percent. Some have argued that environmental factors play a role in autism. Lewis believes the cause is solely genetic. One thing she knows for certain, parenting two sons with AS is the toughest life challenge she’s ever faced. She’s handled it successfully for more than a decade.

Taking Charge of Autism
According to Kathy Johnson, associate director of the Autism Society of Michigan , autism is a neurological disorder that impairs both socialization and communication. Autism is the most common of a spectrum of disorders, including Asperger’s Syndrome, with challenges ranging from mild to severe. Johnson says that the lifelong disability usually appears during the first thirty months of a child’s life and occurs in 1 out of every 166 births. It is four times more common in males than females and there is no cure. But early diagnosis and aggressive intervention can help children with autism lead more productive lives. The number of cases of autism has skyrocketed in recent years, but its cause remains a mystery. Unlike children with lowerfunctioning autism, children with Asperger’s Syndrome have communication and language skills and normal IQs; some are highly intelligent, even gifted. They may do well in school academically and have successful careers. Many people with AS may be considered odd or eccentric, especially because of their challenged social skills, including the avoidance of prolonged eye contact and difficulty developing meaningful peer relationships. Johnson says that some people now believe that some of the most brilliant and accomplished individuals in history, including Albert Einstein and Thomas Jefferson, may have had undiagnosed AS. People with autism have difficulty seeing connections between life events. “It’s as if everything that happens to them in life is new,” Annie Lewis explains. To help others better understand this autistic tendency, Lewis likes to tell a story: “If you were to tell a child with autism or Asperger’s Syndrome to go knock on the neighbor’s door, they would probably understand that request. But they might stand there all day knocking on the neighbor’s door, waiting for what’s going to happen next,” she says. “They don’t understand they are waiting for someone to answer the door.”

As a nurse, Lewis knew something was wrong before her firstborn son was diagnosed with AS at age four. Gregg exhibited many familiar autistic tendencies. His social challenges made it tough for him to play with other kids or form lasting friendships. He had an inability to tolerate the kind of excessive noise and unstructured play that is common during recess and riding the school bus, and he showed a lack of empathy for the feelings of others. Gregg began hitting and biting classmates at his preschool, throwing tempter tantrums, grabbing toys away from his classmates as if they didn’t exist. He lacked the ability to focus in group settings. The staff worked hard to find an intervention that worked, but when their efforts failed, Gregg was asked to leave the school. His mother calls it the worst day of her life. But she refused to give up on her son and for the next five months searched for elusive answers about Gregg’s challenging behavior. “When I first started reading about Asperger’s Syndrome,” Lewis explains, “Gregg was right there on the page.” Armed with hope for a firm diagnosis, and what Lewis calls “the Michael Jordan of preschool teachers,” she was successful in returning Gregg to his preschool. The staff agreed to take him back after he’d had a few months of growth and development. Upon his return, the school had a system in place to deal with him one on one. “It was part of thoughtful planning, overseen by a brilliant and compassionate school director,” Lewis says. “We were very, very lucky.” But it was more than just luck. The crucial decision that Gregg’s mother made to educate herself about his special needs early on, combined with her determination to help Gregg return to the only preschool that would accept him, has made a big difference in his life. “Addressing your child’s needs early can mean the difference between having a functional or nonfunctional child with autism,” Lewis stresses. When asked to rate the effort that went into this stage of the parenting game on a scale of 1 to 10 (10 being toughest), Lewis calls it a 55. “It was 24/7,” she explains. “Gregg was out of school for five months and I cried nonstop.” Lewis also read voraciously, using her career as a nurse to access the National Library of Medicine (NLM) online services. She read every article about autism written in 1994. “We were still in the dark ages about autism and what I read frightened me,” Lewis explains. She wanted something better for her son. “I never believed we would not be successful,” she says. Lewis understands well the importance of aggressively addressing the toddler and preschool years, when a child’s brain is still developing. Research now indicates that many children with autism have better outcomes if they receive solid intervention during those critical developmental years. More about early intervention in Chapter Four.

Still, many of these children are not correctly diagnosed until they are older, often due to concerns about labeling or misdiagnosis because of a lack of universal availability of routine screening tools. Gregg wasn’t officially diagnosed with autism until he was age four. According to a report by the American Academy of Neurology and the Child Neurology Society (www.aan.com/professionals), the average age of diagnosis of autism is age six, even though most parents felt something was wrong by age eighteen months and had sought out medical attention by age two. That angers Lewis. “We have got to do a better job of diagnosing these children early,” she stresses. “The brain is like a sponge during those early years,” Lewis says of this important focus. “It’s the difference between writing in sand at age two and chipping away at granite at age ten.” Lewis had to fight her insurance company to have Gregg tested. “They didn’t know autism is a neurological disorder,” she says with disbelief. “They kept telling me he needed mental health care, not a neurologist. It took months of begging and phone calls for me to get the authorization necessary for the comprehensive testing I knew my son needed, testing that is today a standard of care.” Thanks to his family’s persistence, Gregg is now an eighth grader in a regular classroom, with the support of a skilled paraprofessional that Lewis calls “her angel.” “Jane understands Gregg well,” Lewis says. “She helps him see the connections between things that are happening in his school day and make sense of it.” Children with autism are often unfairly viewed by society as being unruly children, the result of nothing more than bad parenting or lack of discipline. Nothing could be further from the truth. Preparation time and familiar routines are important to children with AS. “We are asking them to come out of their autistic worlds, to be fully present in our world and do things our way,” Lewis adds. “It is an incredibly hard thing for them to do.” At age thirteen, Gregg still exhibits some classic autistic traits, including sensitivity to external stimuli. “He doesn’t do well with unstructured chaos,” Lewis says. That includes noise in the school hallways and riding the bus. But Gregg carries an A average in most of his classes. Lewis now schedules two hours after school each day to allow her son to be totally absorbed in his love of trains.

“Gregg needs to spend time in his autistic world,” she explains. As Lewis struggled to bike up a steep mountain incline years ago, a friend warned that the greatest challenge facing her was mental not physical. When her second son, Max, was also diagnosed in 1999 at age six with AS, obsessive-compulsive disorder (OCD), and an IQ placing him in the top 1 percent of the population, Lewis finally understood the true power of that message: A tough mental attitude gives you an edge in surviving life’s tough challenges. Lewis credits her son’s preschool teacher for voicing concern when, at age five, Max had difficulty interacting with other kids, something his mother had never witnessed. Lewis immediately had him tested, and at age six, he was also diagnosed with AS. “Max was so different from Gregg. He was so smart and verbal and high functioning. It never occurred to me that he might also have AS.” Max’s multiple special needs diagnosis presents its own challenges. “I’ve learned that every child is different,” she stresses. “What is right for one child may not be right for another, even in the same family. There is no magic formula for meeting the challenges of autism.” Today Max is in the sixth grade with the same teacher his brother once had. “She gets him,” Lewis says of this important educational partnership. Lewis has chosen to respond to special needs parenting in the same way she’s faced other life adventures—with cutting wit, solid focus, and a winning attitude. Her life hasn’t been free of heartache, and Lewis knows another tough parenting demand is always just around the corner. For the sake of her sons, she works hard to keep her role in perspective and finds solace in simple things like humor and gratitude. “I’ve learned how to just be grateful for something as simple as a hot cup of morning tea and time alone to drink it.” It’s an important lesson for all parents.

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