Moving Past the “Asperger Syndrome” Label

Several years after the term “Asperger syndrome” was dropped from the Diagnostic and Statistical Manual of Mental Disorders (DSM), people still use the term. Colloquially, it suggests the symptoms of a milder, higher-functioning form of autism. But the latest edition of the manual, known as DSM-5, uses only one term — autism spectrum disorder. Why the change?

Through 2013, children with autism spectrum disorders (ASD) were assigned one of three labels: Those with more severe impairments were diagnosed as having autism. Those with milder disability were said to have Asperger syndrome, and those who didn’t fit either category were classified as having pervasive developmental disorder, not otherwise specified (PDD-NOS). Many parents and doctors continue to use these terms.

By the new guidelines, a child who has social, play, and communication delays, along with particular patterns of behavior (such as atypical, intense interests or repetitive behaviors), will be diagnosed as having an autism spectrum disorder. This diagnosis will come with a description of severity: mild, moderate, or severe. When possible, clinicians also consider a child’s cognitive abilities, since children with autism are at risk for developmental delays.

Debate about the change in terms has often been heated. Parents and providers alike often prefer “Asperger syndrome.” Many websites and books cling to the term, so information on milder autism may still be easier to find by searching that term. Yet it is useful to understand how using the new terminology may help your child.

Quality care requires a clear sense of an individual’s strengths and areas of need — something not accurately reflected in the Asperger rationale. Anyone with social or communication delays that impair his everyday life needs treatment that will help him catch up, regardless of the name we use for his condition. The new thinking encourages focused planning around a particular child’s individual capabilities.

A Unified Theory of Autism

Why was the old term dropped? In the past, the options for diagnosis were:

> AUTISM described a child who struggled with social and communication delays of any severity, along with early language delays, and showed repetitive or obsessive behaviors.

> ASPERGER SYNDROME described a child with average cognitive skills, social and communication impairments of any severity, no early language delays, and having intense, unusual interests.

> PDD-NOS was a catchall for social-communication concerns that did not fit either of the other two labels. PDD implied milder symptoms, but, in reality, if a child had significant impairments but no repetitive behaviors, it was the appropriate label to use.

If that outline seems arbitrary and confusing, that’s because it was. The old terms were often misused and misunderstood. Neither PDD nor Asperger meant that someone had milder impairment than someone else with autism. The terms were vague as to the services a child should get, and were not used consistently among providers.

Using the old labels, intervention plans were often undermined. It doesn’t matter whether a child did or did not have early language delays several years ago. It’s his present needs that matter.

Diagnosis guides services, and the old terms didn’t do that well. Children with severe impairment but not meeting full criteria for autism might get diagnosed as having PDD or Asperger. This meant they might receive fewer hours of services, even if they displayed more significant delays than another child with mild, high-functioning autism.

Several factors relate to outcome for children with autism, including severity of impairment, the presence or absence of cognitive delays, and long-term behavioral therapy. The old labels didn’t define “severity.” While Asperger signified average cognitive skills, children with autism or PDD could have average or above intelligence, too. Milder-seeming labels usually meant a decrease in the amount of behavioral therapy children received.

Actions, Not Labels, Matter Most

Whatever we call their challenges, children with an autism spectrum disorder do not intuitively understand the social world. Severely affected children have little apparent interest in other people. Those with mild impairment may be somewhat motivated socially, but lack skills to initiate or maintain conversation and play with peers. These children require prolonged support to thrive.

Having one term to describe all kinds of autism is a big step toward recognizing each child’s individual strengths, and focusing attention on the kind of care that is most needed. Changing the debate about individual labels allows parents and providers to focus on the services needed by each child.