March 12, 2018
What happened to Asperger’s syndrome?
I often get asked “Does my child have Asperger’s?” in my clinical work. Or, “Do I have Asperger’s?”
These are challenging questions to answer. They have stimulated much debate among clinicians, researchers, and those who have identify with the term over the past several years.
Asperger’s Disorder (more commonly referred to as Asperger’s syndrome) is linked to the work of Hans Asperger, an Austrian physician who published his initial work in German in 1944.
He described children who presented with strong vocabulary and language skills in conjunction with a range of symptoms: Odd social use of language and tone of voice, social isolation from peers, repetitive behaviours, strong interests in unusual topics, and a desire to maintain structure and routine in their lives.
Much of the English-speaking world remained unaware of Asperger’s work until 1991 when it was translated and brought to the attention of clinicians by English psychiatrist Lorna Wing.
Although this description is similar to that of autism, Asperger’s account differed in that speech was less commonly delayed, motor clumsiness was more common, onset of symptoms occurred later, and his initial cases were all male.
A ‘pervasive developmental disorder’
Asperger’s syndrome made its official appearance when the World Health Organization (WHO) published the initial version of the International Classification of Diseases (ICD), 10th edition.
Subsequently, the American Psychiatric Association (APA) included it in the newly defined category of Pervasive Developmental Disorders (PDDs) alongside Autistic Disorder and other similar diagnostic terms in 2000, which brought more widespread clinical attention and an appreciation that not only males can be affected.
Interestingly, the APA reportedly included Asperger’s in an effort to prompt researchers to identify potentially distinct subgroups of autism — so that assessment and treatment could be refined and targeted.
These efforts yielded variable results, and the general research consensus is that clinicians applied diagnostic criteria inconsistently and that individuals with Asperger’s and autism are more similar than different.
Replaced by ‘Autism Spectrum Disorder’
As a result of this inconsistent application and similarities among the PDDs, the APA removed the clinical term from use and replaced it with a broad Autism Spectrum Disorder (ASD) term — encompassing several previous distinct disorders — when they published their most recent diagnostic manual in 2013.
However, the WHO continues to use the term, at least until they release the ICD 11th edition in 2019, which is reported to also use ASD in place of previous diagnostic terms.
It is this recent transition in clinical terminology that has stimulated substantial debate.
Should Asperger’s syndrome have been removed from use and replaced by the broad ASD term?
Scientists, clinicians and those living with Asperger’s have disagreed, sometimes quite strongly, on this topic. There was initial evidence that the new APA framework would result in a substantial number of individuals with Asperger’s syndrome no longer meeting criteria for a clinical diagnosis. And there are concerns this could have a negative impact on their financial support and services, which are dependent on a diagnosis.
However, the APA states that individuals who had a diagnosis under the previous framework should not lose their diagnosis. And research has supported the grouping of previous clinical labels under the broader ASD term.
‘Aspies’ identify with clinical label
Despite these views, Asperger’s syndrome has become societally popular, with characters in movies such as The Accountant and television shows such as Community being portrayed as either having the condition or displaying traits commonly associated with it.
An interesting social phenomenon also began to occur in the early 2010s, in which those with Asperger’s began to personally identify with their clinical label — referring to themselves as “Aspies” or other similar terms that represent their unique attributes and characteristics.
Indeed, it is this personal identification that has led to some of the more personal or emotional responses to the changes in diagnostic terminology, with Aspies often rejecting the term ASD.
In the end, it appears as though Asperger’s has faded from clinical use, while remaining a popular term to describe a certain type of individual.
Given that the term was initially introduced in an effort to determine if it truly differs from other clinical descriptions, it is interesting to observe and reflect upon society’s adoption and integration of it.
Asperger’s unique characteristics
Many clinicians will even admit (if only privately) that they understand the unique characteristics demonstrated by someone with Asperger’s.
As for how I respond to parents, I try to describe the current clinical framework and how it has evolved over time.
I tell them that I appreciate the unique attributes commonly associated with the Asperger’s term and I suggest that if their child’s behaviour seems to align with that description, then they or their child may feel more comfortable thinking about things in that way.
I also work with families to understand how people can often personally identify with clinical terms (for example “an autistic person” as opposed to “a person with autism”) as there is concerted effort from the ASD community to use such person-first language.
In the end, the term that clinicians, families or individuals use is a matter of personal preference. One thing is certain though, Asperger’s is here to stay, even if the diagnosis isn’t.