This article first appeared in the St. Louis Beacon, June 19, 2009 - Almost everyone is familiar with profound autism. They've seen and heard stories of toddlers who tragically lose their language and regress into a private, rocking, sometimes head-banging world in which they're fascinated by objects and indifferent to people.
Asperger's Syndrome, a neurological disorder on the high end of the autism scale, is not as well known. Three out of every 10,000 children are diagnosed with Asperger's in the United States, with boys outnumbering girls as much as five to one. Some don't divulge their diagnosis because they fear others may tease them, calling them "ass-burgers." Others don't want to explain the condition to people who are confused about what Asperger's -- named after scientist Hans Asperger -- means.
"If you say 'autism,' they say, '"Oh, I've heard of autism and I know that's a real diagnosis, but Asperger's -- that's the newest fad, like the over-diagnosis of ADHD (attention-deficit hpyeractivity disorder) in the '90s,'" said Sheri Briley, of Florissant, whose 17-year-old son Andrew Kane was diagnosed with Asperger's at 10.
WHERE DOES ECCENTRICTY END AND ASPERGER'S BEGIN?
When 26-year-old St. Louisan Aaron Likens was an elementary school student in the mid-1980s, Asperger's wasn't anywhere on the radar of most parents, teachers or psychologists. Likens' preoccupation with the Soviets, weather patterns and race cars -- plus his lack of friends -- stemmed from his high intelligence, teachers told his parents.
"Everyone else was concerned with what cartoon was on," Likens remembered.
Asperger's did not appear in the Diagnostic and Statistical Manual (DSM) -- often called the therapists' bible -- until 1994. By then, Likens was 11. Already, he'd missed almost as much school as he'd attended because the noise and unpredictability of the other kids were so disturbing to him. He dropped out after eighth grade. Today, Likens is an author and race car organization director, but it's been a challenging path for this young man with an IQ of 158.
Broadly speaking, people with Asperger's have difficulty with social interaction and change. Their development is often uneven: Some can build a computer but can't drive a car. Others can memorize 30 minutes of TV dialogue verbatim but can't talk to a store clerk. Still others excel in high school but can't go away to college because they're unable to wake up for class.
Unlike those on the mid- to lower-end of the autism spectrum, people with Asperger's typically do not have language difficulties, and they have average to high intelligence. They're often seen as a little odd or, perhaps, shy. So how do parents know if their child is just kind of quirky? Doctors examine several criteria to diagnose Asperger's, looking for a pattern of behaviors:
- Great difficulty with the give-and-take of conversation
- Lack of eye contact, few or unusual facial expressions
- Obsession with one or two narrow interests
- Appearing not to understand others' feelings
- Trouble with understanding body language, nuance and humor
- Monotone, rigid or rapid speech
- Poor coordination and odd gait
- Unusual sensitivity to light, noise, clothing or touch
- Disorganized and easily distracted
Scientists don't yet know what causes Asperger's, sometimes referred to as high-functioning autism. They do know that the brains of people with Asperger's develop differently, and that a predisposition for autism is inherited.
There is no cure. Various conditions found in some, but not all, people with Asperger's can be alleviated with medicines such as antidepressants and stimulants. But treatment predominantly consists of parent education, behavior modification, training in social skills and educational support.
HELP IS AVAILABLE -- UNTIL IT'S NOT
During the school years, children with Asperger's can often get help -- depending on their symptoms -- through the St. Louis Special School District. For example, those who lack organizational skills can get assistance with their daily planner; distractible students can take tests in another room. But the success of even those who do relatively well in high school may come to a screeching halt after graduation.
"Services kind of disappear, and that's unfortunate," said Christine Rankin, a psychologist who's worked almost exclusively with Asperger's clients for nine years.
Many elementary school students diagnosed back in the mid- to late-1990s, who had enough support and persistence to do well in high school, are now thinking about college. But colleges aren't quite yet thinking about them. While all institutions of higher learning offer some help under the Americans with Disabilities Act, students must often advocate for themselves. A few colleges, such as Missouri State University in Springfield, have extra services for students with learning disabilities, but they cost $2,500 a year --- and it's still up to the students to seek the help when they need it.
LACK OF SOCIAL SKILLS CLOUDS THE FUTURE
Little assistance is available for social deficits, unless parents pay for social skills classes like those held weekly at Learning Consultants in Clayton and in Rankin's office in Creve Coeur. Parents can't just assume their children are picking up on the subtle cues of everyday etiquette: how to know when a person has lost interest in your conversation, how close to stand next to someone and even the need to cover their nose and mouth when they sneeze.
"That's something a parent has usually taught their child by the time they are 18," Rankin said. "But with an Asperger's person, that may not have been instilled in them."
Of course, each person with Asperger's is different. But any lack in social skills can handicap those seeking employment. On top of that, the planning abilities needed for a job search and the nuances of the interviewing process elude many job-seekers with Asperger's.
Government assistance is accessible for some, if they have parents or someone else willing and able to help them navigate the maze of government services like Missouri's vocational rehabilitation. The Judevine Center for Autism also offers job-seeking assistance.
Emily Hellwege of Kirkwood, who was diagnosed with Asperger's as a high school senior, has faith she'll land an event-planning job the same way she achieved her sports marketing degree in May: hard work, dogged determination and solid relationships with mentors. Helwege, 23, is spending this summer volunteering for the charitable branches of the St. Louis Cardinals, Blues and Rams.
"Hopefully, I will make connections with people in the organizations who may see how hard I work and how willing I am to learn," Hellwege said.
Nancy Larson is a locally and nationally published freelance journalist who has a 19-year-old son with Asperger's.
