Viewpoint: Setting Asperger’s record straight

We are writing in response to Linda Lewis Griffith’s article titled, “Do you or a loved one have Asperger’s syndrome” (Feb. 19)? We are compelled to correct some misinformation that was offered in that article.

First, the author states that Asperger’s syndrome and autism are both characterized by “normal to above-normal levels of intelligence.” It is correct that the “Diagnostic and Statistical Manual of Mental Disorder’s” diagnostic criteria for Asperger’s syndrome requires that an individual with this disorder have “no clinically significant delay in cognitive development.”

Autism, however, often involves significant learning/cognitive challenges that can include low ranges of IQ scores that are clinically termed “mental retardation.”

The author goes on to state that Asperger’s syndrome is noted for “very high — even superior — language skills.” While this can sometimes be the case, this is often not true. It is true that Asperger’s syndrome is characterized by no general delay in language development but this does not mean that all individuals with Asperger’s syndrome have very high language skills.

In fact, many individuals struggle with pragmatic language skills. Common symptoms of this include taking things people say (such as puns or jokes) very literally, having peculiar ways of putting sentences together, using odd words or having some made-up phrases as part of one’s language and having difficulty being able to hold a truly reciprocal conversation with others.

Griffith reported that “only a small percentage of Asperger’s syndrome sufferers are ever diagnosed.” It is true that, in the past, few individuals were diagnosed. Now with better and a larger variety of diagnostic tools, the inclusion of Asperger’s syndrome in the 1994 “Diagnostic and Statistical Manual of Mental Disorder” and better education of the public, individuals are diagnosed much earlier in life, more frequently and more accurately.

Griffith also stated that “most (individuals with Asperger’s syndrome) lead productive, high-functioning lives, even if they seem or feel a bit odd.” This description applies only to those individuals who are mildly affected by the disorder.

Many individuals with Asperger’s syndrome are more severely affected by the symptoms. The most recent data on adults diagnosed with Asperger’s syndrome who never received intervention until adulthood is relatively bleak. Most are not able to keep or progress in jobs and are chronically unemployed. Many have repeatedly failed friendships and intimate relationships. Depression and anxiety are common subsequent disorders that occur in this population, likely due to the poor quality of life experienced by them and their families.

These individuals often report loneliness and longing for meaningful relationships and work but they lack many daily living, occupational, social and communication skills to be successful. Many are not able to live on their own and must rely on family for financial, social and daily life support. Individuals with Asperger’s syndrome do not have mental retardation and, therefore, rarely qualify for federal or state-funded help through their local regional centers. The family and their health insurance plan are left to support an individual whose daily functioning and ability to provide for oneself is often far below that of their peers.

The author provides a helpful list of screening questions, but in my experience, individuals with moderate to severe levels of Asperger’s syndrome have such limited perspective-taking skills that they would not necessarily be able to recognize the symptoms in themselves. Like any other serious neurological or psychiatric disorder, which Asperger’s syndrome is, one should seek professional diagnostic help and intervention rather than relying on a self-help-type diagnosis and trying a variety of interventions that may have no empirical research to document their effectiveness or safety.

The author states there is “no known treatment for Asperger’s syndrome.” Although it is a life-long neurobehavioral disorder, there is intervention that can greatly enhance one’s life. Interventions typically include behavioral and cognitive-behavioral strategies, the use of visual strategies for such things as organization, improved communication, better understanding of social situations, occupational therapy, speech and language therapy, social perspective-taking skills training and practical problem-solving skills training. Medical approaches such as the use of psychiatric medications to manage symptoms and bio-medical approaches such as diet changes are also common interventions.

Overall, we are finding that psychological focused interventions often allow individuals with Asperger’s syndrome to live a higher quality of life and that is what we hope for all individuals with diagnosed mental illness.

Julie Daggett is a clinical psychologist who works with children and adolescents and Jeanne Sterling is a clinical psychologist who works with children, adolescents and families. They own and are partners in The Family Institute of the Central Coast.