By Marian Wilde , GreatSchools Staff
Asperger's syndrome has become a controversial diagnosis to describe children exhibiting various difficulties with social behavior. Like autism it affects an individual's ability to successfully interact with others.
Although children with Asperger's syndrome (or AS) can have normal or above-normal intelligence, when they start school they often experience difficulty functioning in the social world of the classroom. In fact, it's not unusual for these children to remain unidentified as having Asperger's until starting school. The majority of AS children are diagnosed between the ages of 5 and 11.
"As we become more familiar with the variety of differences in our children, a growing number of school-aged children with impairments in complex social behaviors are being referred for assessments and treatment," says Dr. Mariam King of the Pervasive Developmental Disorders Clinic at the University of California, San Francisco.
Children diagnosed with AS generally show normal development until age 4 in speech, self-help skills and curiosity about the world around them.
A concerned parent should look for many, but not necessarily all, of these signs:
Although scientists have been studying autism since the 1940s, Asperger's syndrome has only been researched intensively in the past few decades. It was initially described by Viennese pediatrician Hans Asperger in 1944, but it wasn't until the 1990s that the disorder was widely recognized in the English-speaking world. As a result, there's a lack of solid data on the prevalence of Asperger's syndrome.
Our understanding of Asperger's is still unfolding, with diagnostic criteria only recently being established in the American Psychiatric Association's Diagnostic and Statistical Manual (DSM) in 1994.
For many years it was thought that one in 166 individuals has an Autism Spectrum Disorder, a range of disorders that includes Asperger's syndrome and the more severe disability, classic autism. In February 2007, new data released by the Centers for Disease Control and Prevention (CDC) indicates that in many areas of the United States the rate of autism in 8-year-olds is as high as one in 150.
An ongoing debate as to whether Asperger's syndrome is a form of high-functioning autism or a unique disorder altogether indicates the current limited state of our knowledge about the disorder.
One prominent researcher, Dr. Tony Attwood of Australia, believes that AS and autism are much more alike than different, and that the terms Asperger's syndrome and high-functioning autism can be used interchangeably.
Others argue that the term high-functioning autism should apply only to children severely impaired early in their history but who go on to improve. AS children, they claim, are fundamentally different in that they do not have early cognitive delays.
"Within the research and clinical fields," says Dr. King, "AS is a pretty controversial diagnostic category. There are some people who think it should be taken out of the DSM because what it's describing are people with autistic disorder that is mild or people with autistic disorder who aren't mentally retarded. There's a huge amount of controversy about that. There's a lot of research about it and the answer to it is unclear."
The cause of autism and AS has not been established, nor has the reason for the startling rise in autism cases.
"What we do know about autistic disorder, and this would include all the categories, is that it has an extremely high heritability rate," notes Dr. King.
Studies have shown that there is a greatly increased chance of having a second child with autism if the first sibling has it. In fact, the chances are about one in 15 that the second child will also have autism. Many parents of AS children have indicated the existence of undiagnosed relatives with similar traits.
Other researchers suggest that toxins in the environment might be the culprit. Most likely, it could be a combination of both factors.
Even though they are often very intelligent, and may even show exceptional talent in certain areas, their inability to understand common verbal and non-verbal cues is a major obstacle to fitting in. AS kids are frequently branded as "odd," both by peers and by adults who don't understand the neurological deficit involved.
Unlike most autistic children, AS children want to have friends. They just don't know how to go about getting and keeping them. Patty Romanowski Bashe, co-author of The OASIS Guide to Asperger Syndrome,, and a mother of an AS child, explains, "These kids are not unconnected. They're not unemotional. They just don't have an innate ability to pick up cues from the environment that you and I have. They have a hard time reading voice tones. They have a hard time reading facial expressions. They have a hard time with language that's not concrete. They tend to be more comfortable in what's concrete, what's logical." For example, Bashe remembers saying to her son, "I've told you this until I'm blue in the face." To which he replied with confusion, "But Mom, your face isn't blue."
Asperger's kids can be trained how to form relationships and interact in social situations. "The kids can learn social skills, but you have to teach it like you would teach math," Bashe says.
In addition to having to deal with social deficits, AS kids tend to be:
To complicate matters, about half of AS children also have Attention Deficit and Hyperactivity Disorder (ADHD). Bashe notes, "They also have a high rate of co-morbidity for things like anxiety disorder, which makes perfect sense when you consider that they have a hard time understanding what's going on with the people around them. So that complicates the picture a lot, too."
There is no cure for AS. There are, however, many interventions and behavior modifications that can yield positive results. Currently, the treatments include:
"There's a huge increase in how sensitive teachers and clinicians are to developmental learning styles," says Dr. King. "There are a whole bunch of kids that have social and communication problems and learning problems. They aren't retarded. There's been a huge effort to figure out if there are clusters of these kids that fit together into diagnostic patterns."
Here are a few basic steps a parent can take to ensure the best possible educational experience for an AS child:
"Kids with Asperger's should have as many opportunities to interact as possible," says Bashe, "such as speech therapy and socialization therapy."
"The key thing I would say to parents" emphasizes Bashe, "is don't let anybody flatter you out of services. Don't let them say, 'He's so smart! He doesn't need that!' If you think your child needs services, you can find them. The first place to go is your school district. And some parents will have to fight."
For long term goals, Bashe suggests parents think about where they want their AS child to be in five to ten years. "Parents need to make sure that Asperger's kids can set the table, fold their clothes, and shower independently. These kids need to know how to make a can of soup. They're so smart that they never cross paths with teachers who would be focused on things like daily living and vocational skills and they really suffer because of that. They're just not observational learners."