Asperger’s remains largely misunderstood

LACONIA — The confusion local resident David Stamps experienced growing up — difficulty holding onto friends and being overwhelmed when thrown into new situations, while also displaying high intelligence and the ability to understand complex systems — is common among those associated with Asperger’s syndrome (or Asperger’s disorder). Their brains simply function differently from those of the general population.

Stamps only recently learned that he shared some of the classic symptoms of Asperger’s, and it has helped him to unravel the mysteries of his past. After reading Roger Carroll’s account of dealing with mental health problems, Stamps decided to come forward and speak publicly about his own struggles, in hopes of fostering a better understanding of the condition.

It is an ongoing struggle. Although Asperger’s was first described in the 1940s by Viennese pediatrician Hans Asperger, the medical community is still trying to understand its place on the autism spectrum — or even whether it belongs on the spectrum — and determine how prevalent it is in society.

The condition entered the medical lexicon after Asperger's writings were translated from the German in 1981, and became a general diagnosis in the 1990s. Characteristics vary by individual, but generally involve difficulty in social interactions and distracted or repetitive behavior, but also include "superpowers" such as an ability to analyze complex systems and ease with computer programming.

Some estimates place Asperger’s at one in every 100 people, and say it affects more men than women. However, emerging studies indicate equal numbers of women may share the traits, but their socialization has masked the behavior that would indicate Asperger’s.

Student screening can help to identify those with Asperger’s at an earlier age, which may help them to adjust, but there also is a concern that being categorized as an “Aspie” can be damaging to the individual.

Karen Lean, who serves on the board of directors of the Asperger/Autism Network in Watertown, Massachusetts, and was “diagnosed” with Asperger’s at age 32, said, “I was born too soon to be a kid and be labeled earlier. I would never propose that kids not get a diagnosis and get an understanding of themselves, but we have to be careful about thinking it would make them indistinguishable from their peers. Making us ‘normal’ is problematic. … I feel a lot of the younger people diagnosed [at an early age] have been hugely affected by being labeled and whatever form of special education they have been subjected to, and there are huge concerns about being normal.”

Trying to “train the autism out of somebody” may be depriving them of the mechanisms that help them to cope, she said.

Lean also noted that Hans Asperger’s association with the German Nazis has cast some doubt on his credibility. In his 1944 paper on autism, Asperger wrote, “We are convinced, then, that autistic people have their place in the organism of the social community. They fulfill their role well, perhaps better than anyone else could, and we are talking of people who as children had the greatest difficulties and caused untold worries to their care-givers. … Unfortunately, in the majority of cases the positive aspects of autism do not outweigh the negative ones.”

In cooperating with the Nazi regime, Asperger is reported to have sent “disabled” children to the Spiegelgrund clinic to be euthanized, and he was a member of several organizations involved in racial cleansing through the forced sterilization of certain people.

The American Psychiatric Association has included Asperger’s as part of autism spectrum disorder in its Diagnostic and Statistical Manual of Mental Disorders (DSM-5), but the Asperger/Autism Network does not consider it to be a mental disorder. Rather, it is seen as a developmental abnormality.

“It’s a different way of thinking. They’re differently wired and have a different way of perceiving the world,” said Michele Cantara, co-director of Adult Services for the Asperger/Autism Network. “They have many strengths, and we try to help them understand what their strengths are and how to build on them.”

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