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Growing Up with Asperger's 

Early diagnosis and treatment can help a child with Asperger's Disorder lead a full life.

It doesn't take much to upset Karen Connelly. A precocious 6-year-old -- she could recite the alphabet at 15 months and started reading shortly after her second birthday -- Karen insists on routine. Anything else, such as her mother calling her by her given name instead of PKRC (Princess Karen Ruth Connelly) will throw her into a crying fit that could last hours.

Karen's tantrum isn't a sign of a kid who's learned to control her parents. She has Asperger's Disorder, one of five disorders that falls under the umbrella of Pervasive Developmental Disorders (PDD) in the DSM IV-TR (Diagnostic and Statistical Manual of Mental Disorders). This category of neurological disorders is characterized by "severe and pervasive impairment in several areas of development," including social interaction and communications skills. Autistic Spectrum Disorders (ASD) is a synonym for PDD and many experts consider Asperger's to be a higher-functioning form of autism.

At first, Karen's mother, Nancy Connelly, never suspected that her daughter might have ASD. Besides her reading abilities, Karen started talking at an early age and could count to 30 by the time she was 15 months old. Bedtime stories at the Connelly household commonly lasted more than an hour. Still, some of her daughter's behaviors were troublesome. Early on Karen exhibited what her mother jokingly referred to as her Rain Man episodes. Karen would sit on the floor and spin around endlessly saying a quote from a television show or movie. As she became older, Karen would run in a circle loudly repeating phrases. It was as though "the computer in her brain was trying to process information but couldn't," Nancy Connelly says.

What alarmed her parents most was Karen's reaction to other children. She stayed at home with her father, Mike, so she wasn't often around other kids. But Karen's actions went beyond a toddler's simple apprehension.

"By the time she was 2 years old, every time Karen saw my niece, Greta, she would yell and cry for hours," Nancy Connelly says. "She had always been afraid of other kids, but this was becoming hard to take. We thought that people must be thinking what awful parents we are. When I asked Karen about it, she said, 'I don't like her, she screams.' My niece occasionally squealed like any 4-year-old, but not constantly."

After one particularly bad occurrence, Nancy decided it was time to consult her pediatrician. Although she researched her daughter's symptoms and familiarized herself with ASD, she didn't want to overly influence the doctor's opinion. Instead, she wrote down Karen's behaviors, which included repetition, pronoun confusion, her obsession with letters and numbers, her sensitive hearing, problems with socialization, and her intense need for routine and order (Karen's favorite activity was sorting her toys). After reading Nancy's report, her pediatrician recommended that Karen see a pediatric development specialist.

In the United States, doctors only began recognizing Asperger's Disorder in 1994 when it was included in the DSM IV-TR. Since then, the number of reported cases has increased -- coinciding with the sharp rise in the more general diagnosis of ASD. According to the Centers for Disease Control, the number of children reported as having ASD for the years 1994-2003 increased six-fold from 22,664 to 141,022. Additionally, the CDC estimates between two and six of every 1,000 children born may have ASD.

Experts disagree about the causes of the recent explosion of cases. "More conservative theories on why this increase is occurring can be accounted for by better awareness and detection methods," says Bart Sevin, director of the Louisiana Center for Excellence in Autism at Louisiana State University's Health Sciences Center. "Additionally, there's a recognition and understanding in terms of the research of what autism disorder looks like at different levels of functioning. As we get better at knowing what the different variations look like, we get better at picking it up. I think that would account for a large majority of the increase."

After Karen had seen the pediatric development specialist, it took another five months for the diagnosis of Asperger's Disorder. Part of this is because of Karen's gender; at least five times more males have Asperger's Disorder than females. Plus, children are rarely diagnosed at such a young age due to the fact that, as the DSM IV-TR puts it, "early language and cognitive skills are within normal limits in the first three years of life."

Contrasting this is Autistic Disorder, another ASD, which usually manifests by 2 years of age and is normally accompanied by mild to profound mental retardation.

All people with ASD share common characteristics: impaired social skills, problems with communication, and stereotyped behavior, interests, and activities. Like others with ASD, Karen is fascinated with letters and numbers, she fears other children, and she has difficulties with socialization. Early intervention has paid off; Karen was entered into a pre-school for exceptional children and this past year she was in a mainstream kindergarten class. In case she needed it, a teacher's aide accompanied Karen to class.

Karen is still learning to adjust to other children and to compensate for some of her fears. She is on anti-anxiety medication, which her mother says "takes the edge off," and Nancy and Mike Connelly employ time limits to help Karen overcome some of her fears. She has never had a haircut -- a trip to a bustling beauty salon would likely overwhelm her -- but her mother has told her that she will have a haircut at home when she turns 7. Karen seems okay with that. She is no longer afraid of other kids although, as Nancy Connelly elaborates, that doesn't mean she is really interacting with them.

"In some ways Karen hasn't progressed as far as I'd like her to, and in other ways she's gone far beyond what we ever thought. She's happy to be around children, but socially she still doesn't really know what it is to be a friend or play with another kid. The teachers have been telling us that Karen will walk around the playground picking up sticks and she'll tell them that she's playing a stick game with the other children. In reality, those children are off playing something completely different and not playing with Karen at all."

Due to the repetitive behavior and their normal cognitive development, some misconceptions regarding Asperger's Disorder persist. Many believe that children with the disorder have unusually high IQs because they are often adept at certain subjects like map reading, number games, and other activities that involve rote memory and focus. One feature of the disorder is a strong rote memory, but a search of the current scientific literature by Sevin didn't reveal a connection between superior intelligence and Asperger's.

Another problem with a recently discovered developmental disorder like Asperger's is that it can be over-diagnosed, especially by people who are unqualified to make a diagnosis. It could turn out there are more people with the disorder than currently known, but Sevin cautions that overexposure can lead to some far-fetched claims of rampant Asperger's Disorder.

"As with childhood disorders like Attention Deficit Disorder and autism to some extent, as Asperger's Disorder is more widely known and popularized, we have to make sure it's not over-diagnosed. You see this stuff all the time: 'Did you know that Albert Einstein had Asperger's Disorder?' I don't know that and I'm not even sure that it's accurate. I'm not saying that people are necessarily being misdiagnosed but if you're going to say, 'She's an engineer and he's an engineer and they all have Asperger's,' then you need really good diagnostic workups to make sure that's the case."

If a parent suspects that a child might have Asperger's or any ASD, the first step is get a proper evaluation. An organization that can help start the process is the Greater New Orleans Chapter of the Autism Society of America. Katherine Jefferson is the board president and believes that early intervention is critical.

"If it's identified early you can get the services you need," Jefferson says. "Just like any normal child, the earlier you start the better for the child. Every school system has a department; in New Orleans Public Schools, it's Exceptional Services (304-4988), where parents can get their children evaluated. It can be done by other agencies, and we can provide all of this information to parents. Once a diagnosis has been made by the school system an IEP (Individual Educational Plan) is developed. Every child is different and so is the IEP, which can include speech therapy, occupational therapy and any other special needs the child might have. Hopefully, this will enable the child to cope in a regular classroom and society."

Jefferson has personal knowledge of the subject -- her own son, Edward, has high-functioning autism, not to be confused with Asperger's, and has been mainstreamed in a regular class for a number of years. Edward is set to graduate from Warren Easton High School in May of 2006.

As for Karen, her mother is confident that she will succeed not only in school, but also in life in general. "Her doctor thinks because Karen is so bright she'll be able to accomplish anything," says Nancy Connelly. "She says as long as Karen keeps getting the help she needs, she'll have a very bright future. I agree."

click to enlarge At times, 6-year-old Karen seemed like "the computer in - her brain was trying to process information but couldn't," - says her mother, Nancy Connelly. - NANCY CONNELLY
  • Nancy Connelly
  • At times, 6-year-old Karen seemed like "the computer in her brain was trying to process information but couldn't," says her mother, Nancy Connelly.


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