Andrea C. Valente, PhD
York University
E-mail: valentac@yorku.ca
Abstract: In this contribution I revise the changes that have been put in place for phasing out Asperger’s syndrome based on the DSM-5 and question its implication to individuals with Asperger’s in terms of their disability identity and positionality as the Other in autism spectrum disorder. Moreover, recent backlash against the eponym of Asperger’s syndrome have struck the autistic/Asperger community affecting once again their self-concept and sense of belonging. In view of these two instances in the Asperger community, I argue that fluctuations in the disability identity have become a matter of rhetoric of naming and of a repositioning of Otherness as a result of complex relations and contexts that involve clinical medicine and history. Hence, I aim to show that Asperger’s disorder has become a contested diagnosis of Otherness in autism studies by analysing extracts from Temple Grandin’s published autobiography Thinking in picture and from comments posted by viewers of a YouTube Channel, “The Aspies World”, in which a video reveals Hans Asperger’s involvements with the Third Reich during the annexation of Austria.
Keywords: Hans Asperger; DSM-5; disability identity; Otherness; Temple Grandin.
Introduction
In 1994, Asperger’s syndrome was included as a separate disorder in the Fourth Edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) – which is a guideline with references and classifications of mind-brain conditions organized by the American Psychiatric Association to support doctors and therapists with their clinical work. Asperger’s disorder, as the DSM-IV refers, was then categorized under a cluster, Pervasive Developmental Disorders (PDD), which deals with impairments in reciprocal social interaction, communication skills, stereotyped behaviours and interests. Distinct from Autism disorder, individuals with Asperger’s do not show delay in language development. [1]
The Asperger’s disorder gained some online media attention at the turn of the 21st century, when a journalist Silberman wrote a popular science article, “The Geek Syndrome”, announcing that many “geeky kids” living in the Silicon Valley were diagnosed with Asperger’s disorder. [2] The majority of those kids were male with parents working in one of the highest technological industry communities in America. Thus, Asperger’s disorder became falsely associated with being a male disorder from a certain social class; moreover, media representations in forms of TV series and films started portraying characters that are computer nerds, ‘little professors’, or just eccentric. For example, a popular sitcom “The Big Bang Theory” (2007-2019) portrays its protagonist (Sheldon), who has a PhD in physics, behaving somewhat pedantically, with mannerisms, and communicating awkwardly in his social interactions.
Because of media influence and of the emergence of neurodiversity movements, individuals diagnosed with Asperger’s disorder have developed a strong sense of identity around the condition, which they call it ‘Aspie’ for short. In 2013, DSM-5 was published with a new perspective of revising psychiatric diagnostics towards a continuum model. It reviewed the criteria for diagnosing autism, Asperger’s, Rett’s which were under PPD diagnoses in the DSM-IV with a single diagnosis: autism spectrum disorder. [3] In other words, individuals who were once diagnosed with Asperger’s syndrome would be referred to as having autism spectrum disorder from then on. The basic criteria for diagnosing autism spectrum disorder remained similar to DSM-IV, however: “persistent deficits in reciprocal social communication, in nonverbal communicative behaviors used for social interaction, and in developing, managing, and understanding relationships and restricted, repetitive patterns of behavior, interests, or activities”. [4] Based on a spectrum model, an individual would be placed on a low or high end of the continuum according to the severity of their deficits.
In the revision of the classification in the DSM-5, Asperger’s disorder was decentralized, and eventually phased out from a clinical perspective; however, an individual with a previous diagnosis of Asperger cannot be simply phased out and be placed as the Other against the autism community. Hence, the changes brought by the DSM-5 have been criticized across different audiences; medical community, therapists, parents, and individuals with Asperger’s syndrome, who have contested against the spectrum model as many with the disability would have their services no longer available or lose their eligibility for new services. Apart from this, those individuals with Asperger’s would lose their disability identity, their self-concept, and their sense of belonging to the ‘aspie’ community. Based on DSM-5, they would be expected to reconfigure their identity as an ‘autistic’, reframing who they are, and introducing themselves to society with a new label. However, many individuals with Asperger’s disorder have preferred to keep their identity prior to the DSM-5, and to face the challenges of living as the Other in the spectrum.
To make matters more complex and complicated, from 2018 onwards, controversial debates emerged not from clinical contexts, but from historical ones, since the name of the syndrome is based on the eponym of Hans Asperger, who was a young doctor at the Children’s Clinic at the University of Vienna during the Third Reich. The Asperger’s community was struck by some allegations of the doctor’s involvement with Nazi bosses, which has made many individuals review once again their disability identity, that is, whether they wanted to be identified with the eponym or not.
In view of these two moments in Asperger studies, I defend that those fluctuations in the disability identity of Asperger’s disorder have become a matter of rhetoric of naming and of a repositioning of Otherness as a result of complex relations and contexts through medicine and history. Based on this argument, this contribution aims to show that Asperger’s disorder has become a contested diagnostic of Otherness in autism/Asperger studies due to an interweave of rhetorical entanglements that mark power relations in the scientific and lay (i.e., vernacular) communities. A contested diagnosis in terms of its name not only can hinder clinical support that a person receives but also his/her individual’s disability identity; it is the latter that I focus on in this contribution.
I examine two types of self-narratives to offer an emic perspective: 1- a life narrative by a well-known woman who has revealed her neurological condition in a published autobiography and discusses the Asperger’s disorder in relation to ASD; 2- comments posted by individuals with Asperger’s disorder in response to a YouTube video from a channel called “The Aspies World”, which speculates about Hans Asperger’s association with the eugenics policies in the Third Reich. These two types of narratives of the self can illustrate these two moments in the history of Asperger’s studies from a bottom-up perspective.
Theoretical Grounds: Complexity
While this contribution is not a historical review of the racial hygiene policies in the Third Reich, it is important to situate Hans Asperger during that time frame in order to understand today’s reactions to the disorder that carries his name. First, Asperger’s disorder is an eponym to Hans Asperger, an Austrian physician who was head of Children’s Clinic in Vienna in mid-1930s and worked with children with mental disabilities. [5] He identified a group of mostly male children with a peculiar syndrome that he called “autistic psychopathy”. Around the same time, in the US, an Austrian expat psychiatrist, Leo Kanner also identified a group of children with similar syndrome and named it “infantile autism”. [6] A connection between Asperger’s and Kanner’s works was only realized in Silberman’s investigative book Neurotribes published in 2015, when the author identified archival material showing that Asperger’s former colleagues in the Vienna Clinic fled to the US and worked under Kanner’s guidance. Nevertheless, it was Kanner who received the credits for identifying autism in 1943, since Asperger’s work was unknown outside Germany-Austria; Hans Asperger’s clinical contributions to autism studies became only known in the English-speaking countries through the work of a British researcher Lorna Wing and Uta Frith’s translation of Asperger’s 1952 monograph “Autist Psychopathy in Childhood” in the early 1980s. Wing decided to refer children with “autistic psychopathy” to Asperger’s syndrome, instead, since she was hesitant that lay people could equate psychopathy with sociopath, while she believed the name Asperger would be a “neutral term”. [7]
The debates about Hans Asperger’s clinical work during the Third Reich were inexistent when Wing promoted his research on autism to the British scientific community; however, it was known that Asperger’s bosses were members of the Nazi Regime. [8] [9] Moreover, there was not much interest in verifying whether Asperger and Kanner were aware of each other’s research with autistic children. It was believed that these two physicians’ interests were coincidental. The history of Asperger’s syndrome drew more attention to the public only after the first years of the 21st century due to some circumstantial factors that I raise here: the establishment of neurodiverse movement, the popular media representation of characters in the spectrum, and the spread of identity politics in North America.
In 2013, the DSM-5 phased out Asperger’s disorder in favour of autism spectrum disorder. The changes stirred the autism community, stimulating more research on the ‘erased’ syndrome not by the ‘experts’ from the scientific community but by the lay individuals who have been diagnosed with the syndrome or by their parents and caregivers; thus, creating a vernacular repertoire to educate the general readership about Asperger’s and autism. Such interests have led to more writings into the political and historical contexts of Hans Asperger recently. For example, Czech’s article “Hans Asperger’s, National Socialism, and “race hygiene” in Nazi-era Vienna” (2018) has propelled a chain reaction, along with Edith Sheffer’s book Asperger’s Syndrome: the origins of Autism in Nazi Vienna (2018), polarizing the history of Asperger’s syndrome across the autism community, mostly in North America. Their main points revolve around Hans Asperger’s compliance with the racial hygiene policies, by witnessing atrocities without resisting, and ‘collaborating’ with a euthanasia center for children with disabilities in which his name, as Czech puts it ““appears” in the files of a 3-year-old girl with mental deficiencies who was sent to the child “euthanasia” clinic Am Spiegelgrund in Vienna”. [10] These ‘revelations’ have shaken the Aspie community since Hans Asperger was known for being “an Oskar Schindler-like protector of children with autism” as Czech states. [11]
Yet, immediate rebuttals have emerged to clarify the allegations against Hans Asperger. For example, Falk’s article “Non-Complicit: Revisiting Hans Asperger’s Career in Nazi-era Vienna” published in 2019 attempted to refute the allegations made in Czech’s article based on archival texts translated from German. Moreover, a working group formed by German speaking researchers have been put in place to investigate those allegations. In 2020, a group consisting of former Hans Asperger’s students and colleagues along with two historians published an interim report “Hans Asperger – Zwischenbericht einer Aufarbeitung durch seine SchülerInnen und KollegInnen”, rebutting some of allegations against the person Hans Asperger (i.e., ad hominem). The complex plot involving Hans Asperger with Nazi politics and medical interventions are highly entangled, and there are still open questions that should be better answered through evidence-based approaches rather than arguments that may only favour political interests.
What is at stake here is how those debates have affected current individuals with Asperger’s syndrome in terms of their disability identity, and how Asperger’s individuals can articulate their decisions to either keep the eponym or not as part of their raison d’être. The historical context and diagnosis changes seen in the DSM-5 has led me to think of Otherness as a dynamic complex system, in which the condition of being the Other (in this case Asperger’s syndrome) fluctuates according to contextual conditions, needs, and demands. Moreover, within such a perspective, the Other is in relationality with various parts and not in a dialectical position only. For example, Asperger’s syndrome can be seen as the Other in relation to individuals with autism spectrum disorder, to non-autistics, to low-functioning autism, to individuals with schizophrenia, etc. Moreover, individuals with Asperger’s syndrome can also decide to change the name of their diagnosis to autism spectrum disorder if they identify with it. The concern is that autistic individuals are known to struggle with transitions, changes, and unexpected situations. [12] For this reason, the phasing out of Asperger’s syndrome as seen in the DSM-5 and the contested eponym due to a loaded past has affected the Aspie community as this contribution shows.
This idea of Otherness from complexity perspectives enables us to move beyond fixed dichotomies to understand the multifaceted meanings that a language can incorporate. [13] [14] A diagnosis not only is a category, or a clinical construct, but also a language item, and therefore, acquires rhetorical force according to internal and external interrelated events provided by the speaker/writer and listener/reader, who are members of a certain speech community. The transient rhetorical force of a language item that emerges out of social interactions confers a dynamic, non-linear feature that marks communication. Furthermore, the rhetorical force of a name not only holds etymology and grammaticality but also carries history and contextual specificities that can affect its semantics and pragmatics. For instance, the diagnosis of Asperger syndrome when communicated to a patient can activate an individual’s memory, creating emotions, behaviours and attitudes such as discrimination, stigma, or isolation. Thus, the rhetorical force of words is not limited, as if it were in a closed system. On the contrary, it is open, non-linear, and “far from equilibrium”. [15] Such views of words/names and their rhetorical forces are inspired by complexity system thinking as a paradigm that attempts to circumvent the polarization of dichotomies.
Morin reminds us that the word complex originates from the Latin complexus, which refers “to what is seen as interwoven” or interlaced together. [16] Morin defines complexity as “a fabric of heterogeneous constituents that are inseparably associated: complexity poses the paradox of the one and the many. Next, complexity is in fact the fabric of events, actions, interactions, retroactions, determinations, and chance that constitute our phenomenal world. But complexity presents itself with the disturbing traits of a mess, of the inextricable, of disorder, of ambiguity, of uncertainty”. [17]
From this view, I defend that ‘erasing’ the proper name Asperger from the diagnosis guidelines or from history is not a ‘solution’ for the problem that such term poses. It is important that human beings learn how to deal with the temporary ’chaos’, without repressing ‘mess’, ‘disorder’, or ‘ambiguity, which enables us to have self-reflection, self-inquiry, and creativity. The push-and-pull force between order-disorder (i.e., equilibrium, disequilibrium, re-equilibrium) requires an attitude of flexibility, mutual understanding, and dialogue. Nevertheless, such cognitive skills can be challenging for individuals with Asperger’s syndrome and autism spectrum disorders, since their ‘deficits’ are in social interaction and communication. For this reason, this contribution questions how individuals with Asperger’s syndrome can deal with the changes of their diagnosis that forms a disability identity, while they place themselves as the Other in society.
Methodology and Analysis
In this section, I explore self-narratives of individuals who have revealed their autism and or Asperger’s condition to a wide audience, while they position themselves in relation to the name of the diagnosis they have received and the changes it has gone through. Moreover, I show how such positionalities constructed through vernacular language and rhetoric can frame Asperger’s syndrome as the Other, as part of those individuals’ disability identity. Here the word vernacular refers to an organic form of using language that is grounded in life experience rather than in a specialized knowledge, which is usually impersonal and reconstructed. In other words, vernacular is close to the notion of home, [18] which enables an individual’s emotional language and corporeal expressions to manifest as action and reaction to an environment.
First, I present and analyse Temple Grandin’s autobiography as it was written before the recent debates on the eponym of Asperger’s syndrome. Nevertheless, Grandin’s narrative reflects the discussions raised with the publication of the DSM-IV. Next, to complement and update the discussions regarding the eponym, I rely on a YouTube Channel, The Aspie World, as one of the episodes directly deals with such issues and stirs an online debate among viewers.
Case 1: Temple Grandin
Temple Grandin is an animal scientist diagnosed with autism spectrum disorder (ASD). Her well-known autobiography Thinking in Pictures: My Life with Autism, first published in 1995, serves to translate neuro-scientific information to a vernacular, everyday language. Moreover, it has a pedagogical function as her autobiography educates both autistic and non-autistic readers to the intricacies of the neurodevelopmental disorder while Grandin’s life story is narrated.
In Chapter 3 of her “neuro-autobiography” Grandin narrates her childhood memories of being first diagnosed with “brain damaged”. [19] She uses vernacular rhetoric to refer to her neurological condition. It is important to note that Grandin’s memories are likely to be constructed by family conversations about the narrator’s neuro-condition since they refer to her tender years. The following fragment illustrates how she describes her condition:
At the time, I showed the symptoms of classic autism: no speech, poor eye contact, tantrums, appearance of deafness, no interest in people, and constant staring off into space. I was taken to a neurologist, and when a hearing test revealed that I was not deaf, I was given the label ‘brain damaged’. Most doctors over forty years ago had never heard of autism. A few years later, when more doctors learned about it, that label was applied. [20]
Grandin uses the word “label” in two instances: one to refer to “brain damaged” as a general term to identify her unknown neurological disorder, the other to refer to autism as a ‘specific’ neurological condition. Although autism has a controversial and uncertain etiology, that is, what can cause it is still under investigation (e.g., virus, genetic disorder, neuronal disorder, environmental), the ‘autism’ label gets attached to a person’s identity, with the possibility of even becoming part of one’s personality, or Self. However, autism is not a fixed neurological disorder, with deterministic symptoms that apply to everyone’s case with the same outcomes. Instead, autism diagnosis fluctuates through a spectrum, that is, a continuum which can range from an individual completely dependent and ‘disabled’ to another one being ‘high-functioning’ or even ‘savant’.
The inconsistency of autism diagnosis is due to contestable and unreliable neurobiological evidence affecting clinical interpretations as seen in the DSM so far, making it “complicated by the fact that the behavioural criteria are constantly being changed”. [21] Grandin states that “Unfortunately, diagnosing autism is not like diagnosing measles or a specific chromosomal defect such as Down Syndrome. Even though autism is a neurological disorder, it is still diagnosed by observing a child’s behaviour. There is no blood test or brain scan that can give an absolute diagnosis, though brain scans may partially replace observation in future”. [22] For Grandin, interpretivism and subjectivity can hinder a precise diagnosis; for this reason, she defends the use of brain imaging scanners for individuals with autism as they can provide an objective and detailed diagnosis. Nevertheless, human beings’ brains are unique in terms of how the neurons wire and function. [23]
As a scientist herself, Grandin privileges scientific objectivity and technological resources to detect autism etiology instead of a clinician’s judgment and interpretation, as she mentions: “In the future, brain scans will be sophisticated enough to provide an accurate diagnosis. Thus far, brain research has shown that these conditions have different patterns of abnormalities”. [24] Her trust in scientific methods such as brain scans to provide “accurate diagnosis” reinforces a positivistic thinking to discover the ‘truth’. Such a method is important for Grandin because an accurate diagnosis through technology would completely differentiate and separate autism from schizophrenia, for example, as she states: “Confusion of the two conditions is the reason that some doctors attempt to treat autism with neuroleptic drugs”. [25] Grandin is concerned about physician’s misdiagnosis and prescriptions of neuroleptic drugs for autistics who are not schizophrenic, as she remarks that “Neuroleptic drugs have very severe side effects and can damage the nervous system”. [26] Thus, we can observe in her life story that her concerns of being placed as the Other has to be authorized by rigorous scientific methods like a brain scanner rather than by a doctor’s clinical diagnoses based on patient’s and family members’ responses to questionnaires to assess his/her behaviours; since the latter has been the common practice to diagnose autism so far.
For Grandin, being autistic is part of her disability identity and personality; for this reason, she needs to assure herself and her readership about her unique form of autism which falls through a spectrum that makes it distinct from other autistic individuals, while she takes a comparative standpoint: “Though most autistics will not function at my level”. [27] Her recursive reaffirmations as a high-functioning autistic woman is likely to be a trace of her self-doubt and anxieties of being the Other in relation to non-autistic individuals, as she describes: “Many parents and teachers have asked me where I fit on the autistic continuum”. [28] Her reply to her readership is through examples of situations which she struggles to fit in socially such as handling new situations, sorting out unexpected problems, and traveling to countries where she cannot speak the native local language: “I feel very helpless when I can’t speak the language. Often I withdraw”. [29] Yet, her comments do not seem exclusive to autistic individuals; a shy, introspective, and anxious person may also express similar concerns. Because high-functioning autism cannot be localized with certainty in the continuum, Temple needs to explain her lay readership about her disorder because it marks her social identity as the Other; yet, under an ambiguous diagnosis: having either Kanner’s syndrome or Asperger’s disorder.
If I were two years old today, I would be diagnosed with classic Kanner’s syndrome, because I had delayed abnormal speech development. However, as an adult I would probably be diagnosed as having Asperger’s syndrome, because I can pass a simple theory-of-mind test and I have greater cognitive flexibility than a classic Kanner autistic […] Like most autistics, I don’t experience the feelings attached to personal relationships. [30]
Although her diagnosis fluctuates, she shares a common feature among individuals with ASD which consists of poor social interactional skills. As a high-functioning autistic woman, falling through a liminality that ranges from normality to non-normality, Grandin justifies her conditions by framing herself as the Other, by either being an autistic person or an Aspie. Nonetheless, Grandin sees autism as part of her identity, of her skin and body, a disorder that “controls who I am”; [31] for this reason, Grandin fears losing the advantages of being a visual thinker, a cognitive function that has helped her become a successful animal scientist. Thus, she wants to preserve her identity as the Other (high-functioning autism), although aware of the everyday challenges she has to deal with.
Case 2: The Aspie World
Autism spectrum disorder is usually diagnosed among toddlers and children; however, since autism awareness has increased due to various representations in the media, more adults are being self-diagnosed in order to ‘understand themselves’. Social media have also contributed to it, and many individuals with ASD have created vlogs to discuss their neurological conditions. Such disclosures have been more frequent among individuals from English speaking countries, likely due to more favourable conditions and contexts than in other cultures, although stigma may still lurk around. One example is a YouTube channel called The Aspie World, opened since 2013, with 181.000 subscribers to cater for an audience of adults with ASD with the intention to raise public awareness of the neuro-condition as seen in the everyday. The word ‘aspie’ has been a vernacular form to refer to Asperger’s syndrome in a way to sound less medically loaded and more inclusive. It is also used as a rhetorical marker to identify a community’s disability identity, which may or may not narrow the gap between individuals with Asperger’s and non-Asperger’s. The host of The Aspie World is called Dan and he is from the UK. In his Channel, the episode “Hans Asperger CONTROVERSY what YOU NEED to know” was posted on August 30, 2018, and it has 7, 861 views, which is far from going ‘viral’; nevertheless, it deals with the theme in this contribution.
Dan’s video is in reference to Czech’s article “Hans Asperger, National Socialism, and “race hygiene” in Nazi-era Vienna” which has stirred and struck the Aspie’s world, including autistics and non-autistics. For example, a famous researcher on autism, Baron-Cohen, published a response to the ‘shocking revelations’ in the article “The truth about Hans Asperger’s Nazi collusion” by stating that “When Wing coined the term Asperger’s syndrome, none of us was aware of Hans Asperger’s active support of the Nazi programme. As a result of the historical research by Sheffer and Czech, we now need to revise our views, and probably also our language related to the Nazi Socialism”. [32]
The Aspie community itself, as Dan mentions, is also struck by such revelations, which makes them discuss the need to revise the eponym from which they have received their diagnosis and incorporated into their disability identity as they interact and present themselves to society. The viewers’ comments show individuals’ reactions to the ‘news’, while a question falls upon individuals with Asperger’s syndrome: should they revise it or not? And what would their alternatives be since most Aspies do not identify with autism spectrum disorder?
Since the video was posted over three years ago, I decided to filter the comments by selecting them to the ‘newest ones’, ranging from a comment that was posted within 24 hours as I was writing this contribution (December 2021) to comments dated as soon as the video was posted in 2018. It means that the topic is still relevant to the Aspie community, and it also reflects the scholarly conversations that have recently happened. There are a total of 305 comments as of January 01, 2022, with 14 comments from viewers directly revealing their diagnosis with Asperger’s syndrome as they post their reactions to the ‘shocking news’. The remaining 291 comments vary, and some are purely political in tone; for this work, I show the 14 viewers who identify themselves as having Asperger’s, as they discuss whether they would revise the language they use to identify their disability or not. The comments fall within a range of the last three years, reflecting a response to Czech’s article (as articulated in Dan’s video) and possible refutations that came along in 2019 and in 2020 as part of the ongoing backlash.
The tables show the viewers’ positions as they posted in the thread of the comments seen in the YouTube page – https://www.youtube.com/watch?v=ltLP6xrS-Vk
.
| Viewer | Posting Time | Keeping the Eponym |
| TM | 1 year ago | because I prefer to hang on to the term I’m most used to „Aspie“ no…we can’t erase history by outright denying it. I was diagnosed with aspergers syndrome when I was a kid in the 90s, I am different from classical autism. and truthfully I prefer aspie over just autistic. |
| RH | 1 year ago | I have Aspergers and I have no problem using the term. Social pressure to conform could account the scientist’s actions at that time. |
| NH | 2 years ago | I was recently retested and they put me as PDD-N0S a little while ago and i think the ASD criteria are super vague. I know I have aspergers and they should have kept the diagnosis. |
| S | 2 years ago | This makes me feel better about having aspgers. I know this is really sick and twisted but knowing that I would have survived the Nazis eugenics program stops me feeling like a defective human |
| E | 3 years ago | I feel like other autistic people are almost bullying those of us who identify as Aspies into only calling ourselves autistic. Well, yes, we’re autistic, but Aspergers was the first diagnosis I receive and I’ll admit that I’m somewhat attached to the label because of my joy at getting a name for why I was different than my peers. |
| R | 3 years ago | ASD personally bothers me, its to board and more of a category than I disorder. (if that makes sense). I still use Asperger’s syndrome |
| C | 3 years ago | I only got my diagnosis when DSM-V was already used, so my official diagnosis is „ASD“, but I was told I would have gotten the Asperger’s Syndrome diagnosis if it happened earlier and that’s what I go by. […]I feel like I’m at the edge of. I do say I’m autistic, but I will always say being an aspie over having ASD, this controversy won’t change that. |
| K | 3 years ago | I am an aspie, always been, always will be. Lost my respect for Hans, but that does not change who I am. |
Table1: Keeping the Eponym
As seen in Table 1, most of the individuals who prefer to keep the Asperger’s diagnosis, use the euphemism ‘aspie’ as a rhetorical device to minimize the relations of their condition to the foreign name Asperger and to its potential reference to German/Austrian history during the Third Reich. Moreover, the euphemism ‘aspie’ can be a preferred term to mitigate stigma and disability that individuals with Asperger’s syndrome might face when framed as the Other. Last, the euphemism ‘aspie’ is also an abbreviated noun form that may indicate not only one’s neurological condition but also one’s identity and sense of belonging to a specific community, distinct from the ASD community.
Thus, for those individuals, keeping the ‘aspie’ is a form of identity marker which makes them unique from other individuals in the spectrum. As seen in their responses, ‘aspie’ becomes the ‘other’ in relation to the autistic community that lives in the spectrum. Moreover, the diagnosis and rhetorical force that the eponym generates belong to a scientific community such as researchers and clinicians, whereas the name ‘aspie’ belongs to a vernacular community of individuals with the syndrome, who want to be identified as such when in interaction with their family members and peers.
| Viewer | Posting Time | Changing the Eponym |
| AP | 5 months ago | Language is ever changing and I think aspergers should be removed from our speech and we replace it with some other word |
| ED | 1 year ago | I don’t think anyone using the term Aspergers should be shamed, but I think its fair to consider starting to phase out that word from the general language. I have recently been diagnosed with autism (the Aspergers variety) and I honestly feel a lot of discomfort with that label. Every time I think/hear the word Asperger, I have this gut reaction of disgust and „child killing nazi“. |
| T | 3 years ago | Since about 2013 I just told people I had a form of Autism and was on the spectrum as it was easier for them to understand If it doesn’t matter what the man did and a name is just a name then why can’t we just change it? […]And to be honest I never liked the name. It sounds like Ass Burgers |
| DK | 3 years ago | My kid has the diagnosis Autism spectrum „previously known as Aspergers“. […] It would be great if there was a new name |
| GR | 3 years ago | I was diagnosed with Aspergers Syndrome in late 1990’s, which is now called Autism (Aspergers Syndrome always has been autism. I wish there was a simple term I could say to people, that doesn’t bring about the wrong impression from the people I tell it to. Autism and Aspergers are not good terms anymore. |
| CA | 3 years ago | I don’t use the Asperger-term since this came out. Hardly did it before either since it is on it’s way out anyway to only be called ASD |
Table 2: Changing the Eponym
As shown in Table 2, 6 viewers are in favour of changing the name of the diagnosis, and do not use the euphemism Aspie in their comments to mitigate the effect of the foreign name, its associations with the Third Reich, or its attempt to be more inclusive, as the previous group does in Table 1. Most of the 6 viewers show their hostilities to use the eponym due to historical connotations as an identity marker of their disability. Instead, they would be more comfortable using a different term to relate to their diagnosis, as most of them believe that neither Asperger’ nor autism can do a good job for them. They seem to understand that those are labels of Otherness, and they find it hard to explain what both terms mean to their peers or community. In other words, neither autism not Asperger seems to be clear terms to translate their ‘deficits’ in social interaction, communication, and behaviours. Furthermore, some comments show that the viewers are concerned about stigma and shame that the eponym may evoke. The ‘foreignness’ that the word Asperger holds as a non-English surname also contributes for their desire of changing the name. While viewers in Table 1 seem more attached to their disability identity as Aspie, viewers in Table 2 show more flexibility in framing themselves in alternative terms.
Final Considerations
The implications of naming a syndrome after physicians or researchers working under totalitarian regimes can be quite complex for future generations. The case of the eponym Asperger’s syndrome has shown that individuals who carry the diagnosis may face further challenges already imposed by disabilities in general: shame, stigma, and discrimination. Moreover, this is an interesting case to exemplify that the concept of Otherness in disability studies such as autism is vulnerable to clinical and historical contexts, making Asperger diagnosis shift from time to time, becoming center as in Kanner’s studies in North America, in the DSM-IV, and in popular culture representations, while losing its centrality when phased out in the DSM-5.
Moreover, the neurodiversity movement since 2000s has helped with the creation of autism communities such as the Aspie, with individuals that incorporate their disability into their identity as developing a sense of belonging, despite being marked by a rhetoric of Otherness, either from a top-down (e.g., clinicians, researchers, teachers) or from a bottom-up (e.g., family members, peers, autistics). The diagnosis Asperger’s syndrome becomes a dynamic, non-linear, and transitional label susceptive to context and rhetorical forces that emerge out of the interactions among various communities, (e.g., scientific and vernacular) impelling individuals with the syndrome to constantly reposition their self-concept and disability identity as the Other in society.
References:
[1] American Psychiatric Association, A. P. A. (1994). DSM-IV: Diagnostic and statistical manual of mental disorders, 69.
[2] Silberman, S. (2001). The Geek Syndrome. Wired. https://www.wired.com/2001/12/aspergers/. Retrieved on 09.01.2022.
[3] American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders: Fifth Edition (DSM-5), 40.
[4] American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders: Fifth Edition (DSM-5), 40
[5] Czech, H. (2018). Hans Asperger, National Socialism, and “race hygiene” in Nazi-era Vienna. Molecular Autism, 9(1), 1–43. https://doi.org/10.1186/s13229-018-0208-6
[6] Van Krevelen, D. A. (1971). Early infantile autism and autistic psychopathy. Journal of autism and childhood schizophrenia, 1(1): 82-86.
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American Psychiatric Association, A. P. A. (1994). DSM-IV: Diagnostic and statistical manual of mental disorders.
American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders: Fifth Edition (DSM-5).
Baron-Cohen, S. (2018). The truth about Hans Asperger’s Nazi collusion. Nature, 557(7705), 305–306. https://doi.org/10.1038/d41586-018-05112-1.
Czech, H. (2018). Hans Asperger, National Socialism, and “race hygiene” in Nazi-era Vienna. Molecular Autism, 9(1), 1–43. https://doi.org/10.1186/s13229-018-0208-6.
Gage, F. H., & Muotri, A. R. (2012). What makes each brain unique. Scientific American, 306(3), 26–31.
Grandin, T. (2006). Thinking in Pictures: And Other Reports from My Life with Autism. Vintage Books. Labov, W. (2013). The Language of Life and Death: The Transformation of Experience in Oral Narrative. Cambridge University Press.
Morin, E. (1992). From the Concept of System to the Paradigm of Complexity.” Journal of Social and Evolutionary Systems, vol. 15, n.4, 371-385.
Morin, E. (2008). On Complexity. Hampton Press.
Prigogine, I. (1984). The networked society. Journal of World-Systems Research 6.3, 892-898.
Prigogine, I. & Stengers, I. (1984). Order Out of Chaos: Man’s New Dialogue with Nature, Bantam Book.
Silberman, S. (2015). Neurotribes: The legacy of autism and how to think smarter about people who think differently. Atlantic Books.
Valente, A. C. (2020). The Vernacularisation of Modern Neurosciences: A Case Study of Neuro-Autobiographies in the Age of Complexity. Unpublished Doctoral Dissertation, Graduate Program in Humanities, York University.
Van Krevelen, D. A. (1971). Early infantile autism and autistic psychopathy. Journal of autism and childhood schizophrenia, 1(1): 82-86.
Wing L. (1981). Asperger’s syndrome: a clinical account. Psychol Med. Feb;11(1):115-29. doi: 10.1017/s0033291700053332. PMID: 7208735.
What’s in a Name? Asperger’s Syndrome in the Formation of Otherness ̶ Andrea C. Valente
Manuscript was submitted: 22.12.2021.
Double Blind Peer Reviews: from 23.12.2021 till 30.12.2021.
Accepted: 31.12.2021.
Брой 50 на сп. „Реторика и комуникации“, януари 2022 г. се издава с финансовата помощ на Фонд научни изследвания, договор № КП-06-НП3/75 от 18 декември 2021 г.
Issue 50 of the Rhetoric and Communications Journal (January 2022) is published with the financial support of the Scientific Research Fund, Contract No. KP-06-NP3/75 of December 18, 2021.