Exploring the History of the Diagnosis of Asperger Syndrome in Relation to Autism Spectrum Disorder - Part 1 - (Back in 2012)

A Historical Ontology of the Diagnosis of Asperger Syndrome in the Diagnostic and Statistical Manual of Mental Disorders (Nov 27, 2012)

Preface: At the time of writing (Nov 2012), Asperger Syndrome (AS) (in the DSM-IV) was set to be included into ASD (Autism Spectrum Disorder) (in the DSM-V), where folks diagnosed with AS at the time were also set to work out their place and fit in this new spectrum. Granted, this paper was written over 10 years ago when I was a graduate student in SFU's Educational Psychology Program, and much as changed and evolved since then. Nevertheless, if the paper shows there was already research on topics like these back then, then there must be, by implication and evidence, even more research on these topics now. Therefore, I look forward to hearing from you about where are some good places, people, practices, and publications to look to for before making a 10+ year update. Thank you again for reading and sharing!

1 - Purpose and Approach

1.1 - The Issue

From 1994, Asperger Syndrome (AS) has been regarded as a distinct diagnosis from Autism, or later known as Autism Spectrum Disorder (ASD), in the fourth edition of the Diagnostic & Statistical Manual of Mental Disorders (DSM-IV). What followed in less than two decades after the widespread introduction of AS to English-speaking audiences, hundreds of books, articles and websites describing it; prevalence estimates have increased dramatically not only for AS, but for ASD as well (Baron-Cohen & Klin, 2006). AS has been internationally recognized as an important subgroup of ASD within the DSM, creating for itself a powerful identity in the psychiatric academia and a complex system of institutional and social support for anyone who fit within the diagnostic criteria of AS at the time.

However, starting May 2013, AS will no longer be considered a separate disorder, but folded under ASD in the DSM-V (Wing, Gould, & Gillberg, 2011). So the unique identity and supportive community that this diagnosis has provided to a large and growing group of people would face certain peril, and perhaps eventual extinction. On the other hand, although some among the community of people diagnosed or involved with AS are opposed to the American Psychiatric Association's decision to move Asperger's Syndrome in with Autism in the DSM-V, this decision could potentially lead to increased assistance for children and adults who show symptoms of what would no longer be called AS (Ghaziuddin, 2010). Consequently, people who consider Asperger Syndrome as the cause of their own or their relatives' social and other shortcomings would likely still be asking for diagnostic and counseling services from the health service. However, while the availability of diagnostic services, counseling, rehabilitation, support for secondary and post-secondary students with AS or ASD has been growing further in recent years, certain confusions and complications may still follow from their pursuit of specific and systemic institutional and educational support (Ghaziuddin, 2011).

1.2 - The Debate

There are at least two areas of debate concerning the issue of AS being subsumed by ASD in the upcoming DSM-V. First is the question whether AS is different from ASD, and prevalent research findings tend towards the trend of incorporating AS into the broader spectrum. According to the recent revisions in the diagnostic criteria of AS (DSM-IV-TR), a person with AS does not meet the full criteria for autistic spectrum disorder (Sanders, 2009). Moreover, as the latest DSM will further modify the diagnostic criteria, comparing research findings across studies has become even more difficult (Yu, Cheung, Chua, & McAlonan, 2011). Consequently, the diagnosis has become not only synonymous with autism, but also a point in the autism spectrum. Secondly, efforts should continue to establish its validity not only from autism but also from other conditions. As many clinical features of AS are also encountered in many other disorders, it is evident that an individual fulfilling the criteria for AS can often also be described using a combination of diagnoses established much earlier, including developmental disorders such as schizophrenia, obsessive-compulsive disorder, and anxiety disorder (Chrzanowski & Feldman, 2006). All things considered, the writer will focus on addressing the first area of debate in a historical ontological perspective, given the limited space and scope of this paper.

1.3 - The Approach

The popularity of AS has generated a demand for psychiatric and educational services for individuals who are given the diagnosis; but it has also led to the opposite effect as the justification of AS as a separate clinical entity was first questioned in the DSM-IV and now disqualified in the DSM-V (Sanders, 2009). So this paper will attempt to critically examine the historical and social contexts surrounding this issue because the controversies that took place can be better understood by adopting a historical ontological perspective. This approach will allow the writer to 1) analyze the context in which AS is constructed and reconstituted, 2) examine the features of AS itself, and 3) consider the political, socio-cultural, and historical reactions that have taken place, as well as the subsequent variations of AS that would emerge (Hacking, 2002). To begin this approach, the writer will seek to answer two questions: 1) How does this point help the reader learn more about the AS and deal with this issue effectively; and 2) What does this kind of investigation teach us about AS? Specifically, the answers found in this paper seeks to help readers better understand the different opinions concerning this proposed/actual change in the DSM-V from a historical ontological perspective to help inform the both the people who are for and people who are against this change in one’s psychological description and identity formation (Sugarman, 2009). Furthermore, subsequent discussion on this issue should encourage us to better understand and empathize with the people who would be affected by this change in the DSM-V. The people groups involved include: 1) people "who ‘had’ it but don’t ‘have’ it anymore”, and 2) people “who didn’t ‘have’ it but will ‘have’ something similar now”. Finally, the future directions written in this paper will suggest how we can better anticipate and respond to how will they respond to this change based on the following questions: 1) How will they react and reconstitute their self-hood and identity based on their new diagnosis; and 2) How will this affect their interaction with the culture and educational system around them?

2 - The Discovery of AS

2.1 - The Founders

Since autism and AS are often seen together, used interchangeably, a historical ontology of AS would require background from not only AS, but also autism as well. In 1916, Bleuler coined the term autism to describe a loss of one’s personal contact, a retirement into one’s self, and a disregard to the one’s surrounding environment observed in schizophrenia (Seitler, 2010). In 1926, Russian neurologist Ewa Ssucharewa wrote “Die Schizoiden Psychopathien im Kindesalter“ (Schizoid Personality of Childhood). Ssucharewa recorded and account of 6 boys’ behavioral habits that strongly resembled the Asperger’s findings in detail and context (Wolff, 1996). Specifically, early researchers of Asperger’s Syndrome have concluded that this paper describes a group of children that resemble children currently given Asperger’s diagnosis (Wing, 1998). In fact, the boys Ssucharewa described were indistinguishable from the condition that Hans Asperger called "autistic psychopathy" in his case studies. In 1944, Hans Asperger, an Austrian pediatrician, was the first psychologist to systematically describe the symptoms AS when he published the paper entitled “Die Autistischen Psychopathen im Kindesalter” (Autistic Psychopathy in Childhood) (Asperger, 1944). Although Asperger used the word autism in terming the condition “autistic personality disorder”, he distinguished the condition he described from schizophrenia by emphasizing the earlier onset of autistic personality disorder, usually after three years of age (Asperger, 1944).?

Unaware of Leo Kanner’s description of 11 children with autistic disturbances of affective contact, communication problems and unusual responses to the inanimate environment (Frith, 2004) published a year earlier, Hans Asperger described four boys, aged six to 11, with unusual interests and odd social behavior. These boys preserved intellectual skills but displayed oddness in non-verbal communication, difficulty understanding social cues, poor empathy and a tendency to intellectualize emotions, formalistic speech, all-absorbing egocentric preoccupations with unusual and circumscribed interests and motor clumsiness with odd posture and gait (Asperger, 1944). Asperger described these boys as “little professors” who talked about their own interests but experienced difficulties with non-verbal and pragmatic aspects of communication, such as difficulty understanding other people's facial expressions (Frith, 1990). Asperger also pinpointed aggression and other conduct problems in these boys as a result of their behavioral difficulties, including non-compliance and negativism (Wing, 1999). Their shortcomings often stemmed from poor social understanding, difficulties in peer relations and egocentrism. Asperger’s original paper also emphasized that the personality traits were primarily male transmitted (Asperger, 1944).

Between the 1940s and the 1980, Asperger’s descriptions were ignored in North America and largely unknown outside of Germany (Wing, 1999). In 1964, child psychiatrist Sula Wolff wrote a paper "Schizoid personality disorder in childhood" that was read at the Sixth International Congress of Psychotherapy (Wolff, 1999). Wolff did not formally publish on the topic until 1979, and her first published paper on the topic was entitled "Schizoid Personality in Childhood: A Comparative Study of Schizoid, Autistic and Normal Children". In this paper, however, Wolff identified her 'schizoid children' with Hans Asperger's 'autistic psychopaths'. Thereafter, she published regularly on the topic of 'schizoid disorder of childhood'. Much later in 1995, Wolff wrote a comprehensive treatment of ‘schizoid Disorder of childhood’ entitled?Loners: The Life Path of Unusual Children. Critically, although her book was highly regarded in the public community, it appears that her lifelong work on ‘schizoid disorder of childhood’ were ignored by mainstream psychiatric academia with favor going to an ‘autism spectrum’ approach (Wing, 1999).

Thus we return to examining Asperger’s work in the 1980s. Originally published in German, Asperger’s work become widely known to English-speaking readers in 1981, when Wing published a review of Asperger’s work and a series of cases (n=30) displaying symptoms similar to those Asperger described (Wing, 1999). She highlighted the possible continuities with autism and located the disorder in the autistic spectrum (Wing, 2000). Wing’s description markedly increased interest in this condition and was the impetus for forthcoming studies of AS, as well as researchers who would expand and contribute to her research, including Frith, Baron-Cohen, Attwood, and Klin.

2.2 - The Syndrome

Although AS was originally described back in 1944, it was not included in the ICD-10 (International Classification of Disease; World Health Organization; WHO, 1993) and the DSM-IV (Diagnostic and Statistical Manual of Mental Disorders) (APA, 1994) until almost 50 years later (Yu, Cheung, Chua, & McAlonan, 2011). Today, AS is defined according to the ICD-10 (WHO, 1993) and the DSM-IV (APA, 1994) as being characterized by qualitative impairments in social interaction, restricted, repetitive and stereotyped patterns of behavior, interests and activities and normal cognitive and language development. (Wing et al., 2011)

In 1981, English psychiatrist Lorna Wing wrote a paper entitled “AS: a clinical account“. Wing’s paper ultimately accomplished three things: 1) the term AS has entered into history as a unique psychological disorder in North American literature, 2) Hans Asperger's work has gain substantial recognition and influence in mainstream psychiatric academia, and 3) the psychiatric condition that Asperger (and Wolff were describing is a mild sort of autism (i.e., on the high-functioning end of the 'autism spectrum') (Lyons & Fitzgerald, 2007).?In 1986, child psychiatrist Peter Szatmari began a study of 'schizotypal children'. He eventually disposed of this terminology and replaced it with 'Asperger Disorder', despite that his criteria for Asperger’s Disorder are more reminiscent of ‘Schizoid Disorder of Childhood’ than the current standardized criteria for Asperger’s Disorder. A compelling reason for his decision at the time was the great deal of enthusiasm among the psychiatric academics to study the condition called AS that Lorna Wing coined and popularized. By 1989, Szatmari also published a set of diagnostic criteria for AS. In 1992, The World Health Organization included 'Asperger's Disorder' in the ICD-10 under the Pervasive Developmental Disorder section.?This new category includes Hans Asperger’s 'autistic psychopathy' and Sula Wolff’s 'schizoid disorder of childhood'. In 1994, The American Psychiatric Association included 'Asperger's Disorder' in DSM IV under the Pervasive Developmental Disorder section.

The ICD-10 and DSM IV became the standards for AS diagnosis in Europe and North America, respectively (Wing et al., 2011). Note that the AS categories‘ descriptions were made comparable to the descriptions for 'Autistic Disorder'. A result was that the standardized AS categories, while overlapping with the old autistic psychopathy or schizoid disorder of childhood category, also differs significantly from the same category. A primary difference is that the standardized AS categories identify only the more functionally impaired persons (Mattila, Kielinen, Linna, Jussila, Ebeling, Bloigu, & ... Moilanen, 2011). Also, while the description of the combined category mentions symptomology as similar to schizophrenia, including mild disorganized behavior, 'schizophrenic eccentricity', and unusual fantasies, descriptions of AS ignore these symptoms altogether. Therefore, changes to description of AS itself did not just happen recently with the proposal given for the DMS-V, but it has been constantly changing according to the researchers that classify the disorder and the contexts that surrounds and influences their classification.

2.3 - The Diagnosed

In 1980, the American Psychiatric Association included 'Schizoid Disorder of Childhood or Adolescence' in the DSM III based on Sula Wolff's work (Ssucharewa & Wolff, 1996). In DSM III R (1987), 'Schizoid Disorder of Childhood or Adolescence' was removed as a category. This detail illustrates that by this time, Lorna Wing's view that AS belongs to an 'autism spectrum' attracted a following in psychiatric academia. In 1989, Swedish child psychiatrist Christopher Gillberg published the first set of diagnostic criteria for AS (Ehlers & Gillberg, 1993). Furthermore, recent research on ASDs (ASD) published new findings that changed the diagnostic criteria of ASD altogether. More specifically, the specific symptoms that once separated Asperger's Syndrome from Autism in the DSM-IV, including the language impairment and/or delay, are no longer considered as necessary criteria for diagnosis of ASD. Therefore, anyone who may have previously met the criteria for a diagnosis of Asperger's Syndrome would now meet the proposed criteria for ASD, thus eliminating the necessity to have two separate entries in the DSM (Wing et al., 2011).

3 - The Diagnosis of AS

3.1 - Rise and Fall in the DSM

Since the popularization of AS among psychiatric academia by Lorna Wing’s translation of Asperger’s (1944) work in 1981, it has been regarded by mainstream psychiatric academia as a branch off of the autism spectrum; however, psychiatric academics have been divided on the issue of whether or not AS, as defined in ICD-10 and DSM-IV, is a valid category (Ghaziuddin, M, 2010). Consequently, the reason for AS being given its own category in ICD-10 and DSM IV is so research into AS could continue without opposition given the popularity AS still retains (Wing et al., 2011). However, the primary question for debate amongst AS researchers remains to be whether AS is empirically different from ASD (Lohmeyer, 2012). In particular, researchers have been comparing AS to high-functioning autism disorder. Researchers have focused on the accuracy of the diagnostic criteria for each group and fine differences between the two groups (Yu et al, 2011). In addition to the difference between normal and late language development, researchers have concluded that the AS and ASD standardized criteria fail to adequately distinguish between the AS group and HFA group (Wing et al., 2011). Also, since the diagnostic criteria for standardized AS categories essentially fail to differentiate it from ASD, psychiatric academics reached a general consensus that modifications are necessary for the standardized AS categories (Ghaziuddin, 2011). That is, by 2013, all Pervasive Developmental Disorders, as well as Asperger Syndrome, in the DSM-IV will be subsumed by a single ASD category in the DSM-V.

3.2 - Criteria & Classification

According to the DSM-IV, the diagnostic criteria for Asperger's Syndrome includes qualitative impairments in social interaction such as problems with eye contact, facial expression,?awkward body language and posture, difficulty in developing friendships, inability to share common interests, or failure reciprocate socially or emotionally (Yu et al., 2011). The second diagnostic criteria for Asperger's Syndrome are restricted repetitive and stereotyped patterns of behavior, interests and activities such as an intensely focused preoccupation with certain interests. These disturbances must create "clinically significant impairments in social, occupational, or other important areas of functioning." According to the DSM-IV, what people with Asperger's Syndrome don't experience are delays in language, motor skills, or cognitive abilities. There is some overlap between the diagnosis of AS and ASD, such as the impairment in social interaction, restricted repetitive and stereotyped patterns of behavior, interests and activities (Wing et al., 2011). However, children suffering from ASD also have developmental delays that children with AS don't have, such as problems with speech delays and lack of imagination (Yu et al., 2011).

3.3 - Changes & Challenges

There has been controversy as to whether AS deserves diagnostic status at all. The DSM-IV (1994), DSM-IV-TR (2000), and DSM-V (2013) has changed, and will continue to change the definition of AS, which is to include it within the overall range of ASDs: DSM-IV (1994) – AS was added as a separate disorder in the manual. DSM-IV-TR (2000) – AS was listed as one of the 5 Pervasive Developmental Disorders (PDDs). DSM-V (2013) – AS will no longer be a separate disorder. Perhaps the biggest change from?DSM-IV?is the proposal to combine AS and ASD into PDD, with AS being placed into a new category of ASD (Wing, 2000). There are some studies which have used the DSM-IV criteria to evaluate AS but have reached the conclusion that it is virtually unworkable to make a DSM-IV diagnosis of AS (Eisenmajer, Prior, Leekam, Wing, Gould, Welham, & Ong, 1996). To test whether the children diagnosed with AS at the time actually “had” AS as described by Hans Asperger, Miller and Ozonoff (1997) examined the four cases Asperger originally presented in his paper and compared them with the DSM-IV criteria to determine whether it was appropriate to give them a diagnosis of autism or AS. All four cases were found to have met the DSM-IV criteria for ASD, but not for AS. Therefore, Miller and Ozonoff (1997) concluded that the present DSM-IV diagnostic criteria no longer capture the syndrome Asperger originally described in 1944. Here is one instance where researchers have demonstrated the pace of assessment and diagnosis is slower than that of research and criteria.

Before the official diagnostic criteria included in the ICD-10 and DSM-IV were introduced, Gillberg (1998) and Szatmari (2000) each presented sets of diagnostic criteria independently of each other. Gillberg's classification defined six domains that comprise of social impairments, narrow interest, repetitive routines, speech and language peculiarities, non-verbal communication problems, and motor clumsiness (Zukauskas, Silton, & Assump??o, 2009). On the other hand, Szatmari defined four domains, which cover solitariness, impaired social interaction, impaired non-verbal communication, and odd speech (Zukauskas, Silton, & Assump??o, 2009).

Conversely, there are also similarities for all of the diagnostic sets of criteria. The ICD-10 and DSM-IV require normal cognitive development and no delay in language development, but this is the opposite of the set of criteria presented by Gillberg (1998), where delayed language development is considered as part of the diagnosis. On the other hand, the diagnostic sets of criteria produced by Szatmari (2000) and Gillberg (1998) do not mention cognitive functions, or early language development. This implies that a person with cognitive retardation would comply with AS diagnostic criteria. Unlike the criteria of Gillberg (1998) and Szatmari (2000), those in the ICD-10 and DSM-IV did not include language delays or non-verbal communication impairments. Likewise, Asperger (1944) himself emphasized both these features when he described the four children as ‘little professors’ who possessed large vocabularies. But he also noted their odd intonation, their inappropriate use of speech and, in some cases, their reversal of pronouns (Wing, 1998).

4 - The Demise of AS

4.1 - What Happens Now?

“AS” has become an indispensable key to self-understanding and self-acceptance for a rapidly growing multitude of children, teens, and adults. The AS diagnosis allows them to grasp and accept their unique combination of strengths and challenges, to become effective self-advocates, and to develop more adaptive life strategies. In short, the AS diagnosis explains to people with AS why they struggle in life despite their considerable gifts. A host of adults have embraced this identity and found humor and beauty, as well as compassion and courage, in it. Removing Asperger’s from the DSM would cause a devastating loss to people with AS, who have built precious, hard-won identities around the term. People with AS and their families tend to be marginalized in their communities. AS is the key to finding face-to-face and/or online communities of similar people – people who can really understand each other’s experiences, and can support each other on their journeys. The term “AS” is what allows them to connect to others like them.

4.2 - What Does This Mean Socially?

In terms of one’s social development, students with AS, unlike other?manifestations of ASD, are often puzzled and unaware of what has been done incorrectly as they experience mistreatment, bullying, and victimization (Muller, Schuler, & Yates, 2008; Bauminger & Kasari, 2000). Depending on the diagnosis that they receive at the time, most adolescents and young adults with AS still want to be social, but would see themselves as having failed to learn, by some combination of biological, developmental, and social factors related to the syndrome, how to socialize successfully build interpersonal relationship, which often lead them to withdraw and replace their social interactions with asocial behavior (Bauminger, Shulman, & Agam, 2003). Moreover, while students with AS often interact better with those considerably older or younger than themselves, rather than those within their own age group (McConnell, 2002, Asperger, 1944), all students within the ASD spectrum remain at risk of being drawn into unsuitable and inappropriate friendships and social groups.?

However, whether students are formally diagnosed with AS and higher-functioning ASD, there are still good opportunities that are available to help them overcome these social impairments and learn to succeed not only academically, but socially in schools and communities, provided that people around the students can show genuine care for their welfare and offer multiple sources of social support (Hendricks & Wehman, 2009). Noddings (2002) addressed this issue as the paradigm of education shifts from quality student-teacher relationships to academic specialization. That is, Noddings (2002) reminisces the investments teachers made in building quality relationships with their students, and dreads the idea of training teachers to specialize and develop behaviour objectives to follow. In other words, the quality friendships provided by teachers and support groups are far more effective in helping students with AS or ASD realize the potential of growing into social and healthy human beings, as well as productive and successful members of their community. Therefore, families, teachers, friends, and support groups should always have the same opportunity to demonstrate they care not only for their students’ learning, but also their emotional and social wellbeing.

4.3 - What Can We Do?

Accordingly, the most striking detail in this piece of evidence is not the efforts, however, but rather the insights these students have about not only their own social awareness and situation, but how the people around them respond to their attempts to interact and belong (Muller et al., 2008). Whatever the diagnosis, such students are very good at seeing whether the teachers and peers genuinely care for them, and the things that help those students genuinely grow would lead to a key change in perspective on both the students and the people around them. Instead of suffering the burden of dealing with the problem of a new diagnosis, they can still mobilize support from friends and teachers who would see themselves as resilient survivors with a specific condition rather than patients with a minor disorder. These students would continue to persevere in their academic learning and pursuit of social relationships despite their initial lack of social awareness and competence. They would also do all they can to learn and acquire the social wherewithal to build lasting friendships and foster a strong sense of community and belonging that further motivate them to excel in their respective academic expertise (Carrington, Templeton, & Papinczak, 2003). Therefore, one of the greatest strengths and encouragement that can be found in conducting this historical analysis is that as long as ongoing social support within a safe and open environment is provided by some part of the community, be it the federal, municipal, educational, or especially social groups, individuals with AS or high-functioning autism can learn to successfully constitute their social identity as they continue develop their social support network of family, friends, social workers, community leaders, and educators.

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