Opinion Conversations on the science of autism research.
Opinion

What’s in a name?

by  /  9 September 2011

Television commercials for new drugs often tantalize viewers with exotic-sounding names for various disorders — premenstrual syndrome becomes premenstrual dysmorphic disorder, for example, and commonplace winter blues turn into seasonal affective disorder.

What these companies realize is that names are powerful, creating what we perceive to be a unique identity. Giving a name to the symptoms validates them, suggests that pharmaceutical companies truly understand them, and may be able to provide a cure. Unfortunately, however, this is rarely the case.

The debate over whether Asperger syndrome is distinct from high-functioning autism deals with this very issue. Individuals with the syndrome feel attached to their diagnosis, whereas others use the term loosely, and often inaccurately, to refer to people with autism who are intelligent and have good language skills.

As currently defined by the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), Asperger syndrome is distinct from high-functioning autism, with the latter applying to people with autism who have an IQ above 70. But in the DSM-5, the forthcoming edition of the manual set to be published in 2013, Asperger syndrome will no longer be a distinct subset of autism

A new analysis of 69 studies, published 2 August in Autism, supports this move1. According to the review, the six diagnostic measures used to separate Asperger syndrome from high-functioning autism — age of onset, language and social skills, intellectual ability, motor skills, repetitive behavior and the nature of social interaction — do not identify a subset of people unique from those who have autism in general. 

One of the most interesting findings of the study is that there have been numerous published guidelines for diagnosing Asperger syndrome since the 1940s, and they are all strikingly different from one another.

For example, according to the DSM-IV, people with Asperger syndrome meet typical milestones in languagedevelopmentbefore 3 years of age, whereas those with autism show language delays at this age. But using this criterion, as many as 25 percent of individuals diagnosed with Asperger syndrome by Hans Asperger himself would no longer qualify as having the disorder2.

This age-of-onset criterion, which is one of the most important distinctions between Asperger syndrome and high-functioning autism in the DSM-IV, is problematic in several ways, according to the new study. For example, studies show that not all children who don’t speak by 3 years of age have developmental delays later in life, suggesting that this distinction could be meaningless. This could be, in part, because language skills are difficult to assess in toddlers.

The review does find some reliable differences between individuals diagnosed with Asperger syndrome and those with autism. For example, one study suggests that individuals with autism show problems with posture, whereas people with Asperger syndrome are clumsy3.

Other studies report that individuals with Asperger syndrome are better able to interact with their peers than are people with autism, but that they also show higher levels of social anxiety, depression and antisocial behavior.

But these subtle distinctions in motor skills and social behavior are not reflected by the current diagnostic tests that separate one disorder from the other.

Unfortunately for ‘Aspies’ — those who proudly identify with the Asperger diagnosis — naming a disorder has larger implications than community-building. Researchers often rely on subgroups to hone in on the underlying causes of a disorder.

What if in the case of autism, there is no such thing as a unique subgroup? If that’s true, a name for any group within it becomes just that — a name in name alone.

References:

1: Sharma S. et al. Autism Epub ahead of print (2011) PubMed

2: Hippler K. and C. Klicpera Philos. Trans. R. Soc. Lond. B. Biol. Sci. 358, 291-301 (2003) PubMed

3: Rinehart N.J. et al. J. Autism Dev. Disord. 36, 757-767 (2006) PubMed