Asperger's syndrome: history of a diagnosis that no longer exists

Asperger's syndrome: history of a diagnosis that no longer exists

Asperger's syndrome

International Asperger's Syndrome Day occurs every year on February 18: in reality, starting from 2013, this condition is no longer considered a diagnosis distinct from autism and the corresponding picture is part of the autism spectrum disorders. Although an important question of identity still remains, the existence of Asperger's syndrome as a diagnostic entity has been rather brief, arousing great interest and conflicting opinions both in the scientific community and outside it. Let's see how his perception has changed over the years and what the current situation is.

As reported by the World Health Organization (WHO), autism spectrum disorders belong to neurodevelopmental disorders and are a heterogeneous group of conditions characterized by a certain degree of difficulty in social interaction and communication, along with other characteristics such as atypical patterns of activities and behaviors. The capabilities and needs of autistic people vary and can evolve over time: while some autistic people can live independently and may require a mild level of support, others may require a high level of support, even lifelong. Speaking of numbers, according to the Ministry of Health, in recent years international epidemiological studies have reported a generalized increase in the prevalence of spectrum disorders, probably due, among other factors, to greater training of doctors, increased knowledge by the general population and changes in diagnostic criteria, including the one involving Asperger's syndrome ten years ago.

Brief history of a diagnostic entity

Let's take a step back. As reported by the Higher Institute of Health , the syndrome takes its name from the Austrian doctor Hans Asperger , who in 1944 described a group of children who showed particular behaviors in social interaction, communication skills and restricted and absorbing interests. Since Asperger wrote in German, his work did not become known in the English-speaking scientific world until the British psychiatrist Lorna Wing used the name "Asperger's syndrome" in an article published in 1981 in the scientific journal Psychological medicine , proposing the term to refer to a group of 34 people aged between 5 and 35 who responded to the characteristics originally described by the Austrian doctor. While the number of publications on the "new" syndrome grew exponentially - reports a 2015 article published in the journal Frontiers in Psychology which briefly traces its history - within the scientific community the idea quickly gained ground that autism and Asperger syndrome were different entities , mainly due to the fact that Asperger people had good cognitive and linguistic skills , in addition to the fact that for different researchers the so-called impairment of social interaction differed qualitatively between the two conditions.

In 1994, all of this led to the first (and only) appearance of Asperger's syndrome in the fourth edition of the Diagnostic and statistical manual of mental disorders (the reference manual, drawn up by the American psychiatric association, on and psychiatric disorders), Dsm-IV , as a subcategory of pervasive developmental disorders, distinguishing it from autism by the absence of intellectual disability and functional impairment of language. As anticipated, the new diagnostic entity does not have a long life: the introduction of Asperger's syndrome as a distinct diagnosis, the authors of the 2015 article continue, has been surrounded by controversy from the beginning, showing numerous contradictions in its definition and in the its diagnostic criteria.

The new diagnosis

In the light of all this, not even twenty years after its introduction in the Dsm-IV, the Dsm-5 working group dedicated to neurodevelopmental disorders concludes that there is insufficient evidence to support a meaningful distinction between autism and Asperger's syndrome, sanctioning the disappearance of the latter in the DSM-5. In particular, the new document, published in 2013, introduces autism spectrum disorders, which include the diagnostic criteria for autism and concurrent conditions, according to which the diagnosis is autism with (or without) intellectual disability, which in turn may have varying degrees, and/or with (or without) functional impairment of language (to varying degrees); moreover, the Dsm-5 also defines the levels of support that a person on the spectrum may need, from level 1 (mild support need) to level 3 (high support need). The WHO has also eliminated Asperger's syndrome from its International Classification of Diseases and Related Problems, inserting autism spectrum disorders in the new 2022 edition, the ICD-11.

“ The DSM-5 , in a certain sense, has broadened the diagnosis, introducing the concept of the autism spectrum, which includes more pictures of neurodevelopmental disorders; this has partly led to an increase in the number of cases, which express a very varied reality ", Elisa Maria Fazzi, full professor of child neuropsychiatry at the University of Brescia and president of the Italian Society of Child Neuropsychiatry (Sinpia) told “ It can be said that what was previously called Asperger's can remain a picture with certain characteristics, included however within the variability that encompasses the autistic spectrum; the boundaries of these peculiarities, therefore, are extremely individual and vary from person to person: it is for this reason that, according to the scientific community, the diagnosis of Asperger no longer exists, but the corresponding picture falls within the autistic spectrum disorders ”, he adds Fazzi.

On the basis of this intrinsic variability of the spectrum, therefore, the levels of necessary support also vary, which, rather than on the diagnosis, depend on the individual person, on the circumstances and can change over time. "Asperger's syndrome was included on the spectrum because it was realized that it was never anything other than an autism spectrum disorder, but simply a specific configuration of the person's characteristics," Alice Sodi and Alice point out to Roberto Mastropasqua, respectively vice president and secretary of Neuropeculiar Aps, an association founded and directed by autistic people that deals with autism with a socio-cultural approach, also through the dissemination of the Neurodiversity paradigm. “ Theoretically, the distinct diagnosis was meant to facilitate access to a specific type of support for that population, which has never been possible even for those who were within what was categorized as Asperger's syndrome, because there they were people who needed very different things, just like everything else on the spectrum”.

An open question?

The elimination of Asperger's syndrome from the DSM-5 has not been welcomed by all in a positive way: within the scientific community, some authors, especially in years immediately preceding and following the publication of the manual, believed that it should continue to be mentioned as a label for a particular group of patients within the spectrum, offering a clinical description of the syndrome but no diagnostic criteria; others have hoped for the syndrome's resurgence as a diagnostic entity and for future revisions of the manual.

Furthermore, many people who have received a diagnosis such as Asperger's prefer to continue using this definition, and for years this syndrome has represented (and for many people continues to represent) an important identity issue, the elimination of which has aroused several objections: as stated in an article published on , Dania Jekel, executive director of the Asperger/Autism Network , expressed her fears about the future of a community created over the years. “Twenty-two years ago, there was a whole group of people who weren't identified, they didn't have resources, they didn't know each other. Being diagnosed with Asperger's allowed for the creation of a large and very supportive community and allowed people to find relevant resources ", says Jekel. In reality, inclusion within the autism spectrum should avoid lack of support, facilitating access to services for all people who can be understood on the spectrum.

" As far as it concerns our association ” Stefania Goffi, president of the Asperger Group onlus, tells Italy , “ we continue to call ourselves this way for a historical reason: we founded the association in 2003, ten years before the DSM-5, and therefore we think it makes no sense to change the name.However, for example, all our awareness campaigns and initiatives are linked to April 2, World Autism Awareness Day, also because too many po often the syndrome is the protagonist of a stereotyped narration, according to which Asperger people are always described as real geniuses: this representation is harmful both for autistic people without intellectual and/or language disabilities, and sometimes - especially in children – are burdened with too high expectations or worse, struggle to have adequate support and both for autistic people with high levels of intellectual and language disabilities”.

In fact, some studies have underlined that patients, families, education professionals and health professionals connote Asperger's syndrome with positive characteristics, while instead they associate autism with strange behaviors, difficulties in learning and family dysfunction. “ In the past, Asperger's syndrome was used to reassure children and adults who received a diagnosis that they were not in a 'serious' situation like the one we normally think of when talking about autism. In reality, however, such an approach is problematic , because from a socio-cultural point of view it only takes root and reinforces the stigma around autistic people and disability in general, as well as generating the perception that so-called Asperger's people are not properly autistic, that their difficulties are negligible and that they should not have a voice in the debate on autism”, conclude Mastropasqua and Sodi.

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