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published online 5 June 2013Health (London)David C Giles

the proposed changes in the diagnosis of Asperger's disorder'DSM-V is taking away our identity': The reaction of the online community to

  

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‘DSM-V is taking away our identity’: The reaction of the online community to the proposed changes in the diagnosis of Asperger’s disorder

David C GilesUniversity of Winchester, UK

AbstractThis article considers the fate of Asperger’s disorder in the light of proposals for the Diagnostic and Statistical Manual of Mental Disorders (5th ed.) to collapse Asperger’s disorder along with other pervasive developmental disorders into a general spectrum of autism. It is argued that a powerful lay and scientific culture has evolved around the concept of Asperger’s disorder, which has found a particularly compelling voice over the last decade in the online Asperger community, with websites such as Wrong Planet recruiting tens of thousands of members. In order to assess the impact of these proposed changes on the online Asperger community, 19 threads on the topic of Diagnostic and Statistical Manual of Mental Disorders (5th ed.) are analysed according to the arguments that community members put forward in favour of, or in opposition to, the proposals. Many members embrace the notion of the spectrum and have already coined a new identity – ‘spectrumite’ – to adapt to the diagnostic shift. Others, however, are suspicious of the motives behind the absorption of Asperger’s disorder, and potential threats to the provision of services as well as the strong ‘aspie’ identity that reflects the large literature and the online public sphere around Asperger’s disorder. To what extent this culture poses a challenge to the authority of the Diagnostic and Statistical Manual of Mental Disorders is uncertain at present.

Keywordsdiscourse analysis, mental health, technology in health care

Corresponding author:David C Giles, Department of Psychology, Faculty of Humanities and Social Sciences, University of Winchester, West Hill, Winchester, SO22 4NR, UK.Email: David.Giles@winchester.ac.uk

488006 HEA0010.1177/1363459313488006HealthGiles2013

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Introduction

One of the criticisms repeatedly levelled at the American Psychiatric Association’s (APA) Diagnostic and Statistical Manual of Mental Disorders (DSM) is that it patholo-gizes everyday behaviour with its constant invention of new syndromes, creating labels to stigmatise mere eccentricities (Kutchins and Kirk, 1997; Lane, 2007; Szasz, 2007). Just as psychiatry has the power to bestow ‘illness’ upon individual citizens, it has also the ability to deny or remove it, against the will of those individuals who – for whatever reason – desire to own their diagnosis, a genuine ethical concern (Charland, 2004). In this article, I discuss the potential identity dilemmas thrown up by the regular revision of the DSM, by which syndromes can be reclassified or deleted entirely at the behest of its expert panel of practitioners.

The specific instance I want to discuss here is the case of Asperger’s disorder (AD1), a diagnosis that first appeared in the DSM (4th ed.; DSM-IV; APA, 1994), which faces extinction in DSM (5th ed.; DSM-5), projected for publication in 2013. The broad ration-ale for the deletion of AD is, arguably, progressive in that it reflects a general shift in the DSM-5 from a categorical classification system to a dimensional one (Bentall, 2009): in future, individuals who would have previously received a diagnosis of AD will be described simply as on the autism spectrum, a dimension along which clients are ranked according to the severity of their symptoms. Effectively, this means that there will be no qualitative distinction made between AD and high-functioning autism (HFA), a positive step for several researchers who argue that diagnosis to either category is arbitrary (Bennett et al., 2008; Tryon et al., 2006). At the same time, there is equally vociferous support among researchers, mental health professionals and mental health service users for retaining the AD diagnosis, since it is claimed that it is far too soon to discard a cat-egory originally based on extensive field study evidence, and that it does a disservice to the many individuals in receipt of the diagnosis who have derived personal meaning from the label (Baron-Cohen, 2009).

If the fate of AD were simply a matter for mental health professionals to debate and determine, the proposed DSM amendments would remain solely a concern for practition-ers and academics. However, in today’s digital communication society and consumer-driven health-care system, a new and potentially powerful interest group has emerged for which diagnostic criteria are not an arbitrary means of classifying psychiatric patients but a blueprint for a social identity. This group has found its voice on the medium of the Internet, in the form of digital online communities representing practically all DSM diag-noses (Giles and Newbold, 2011). These communities have, to all intents and purposes, organised themselves around the criteria laid down in the DSM, and, while remaining broadly faithful to the official manual, have in many cases developed their own ad hoc methods of diagnosis and classification (Giles, in press; Giles and Newbold, 2011). The community representing AD is particularly large and vociferous, and the DSM-5 propos-als have met with mixed enthusiasm in a group that has created its own unique identity – the aspie – around the diagnosis (Clarke and Van Amerom, 2007; Flaskerud, 2010).

What does it mean to be labelled an aspie on the basis of DSM-IV but receive a diag-nosis of autism spectrum in DSM-5? In this article, I examine the online Asperger com-munity’s reactions to the proposed changes to the DSM, what implications the changes

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have for those who label themselves ‘aspie’, and the impact of the proposals for the relationship between community members and the mental health professions.

Asperger(’s) syndrome: a brief history

The term ‘Asperger’s syndrome’ is typically credited to the British psychiatrist Lorna Wing, who described the clinical features of a group of 34 children that matched the set of case studies outlined by Austrian paediatrician Hans Asperger several decades previously (Asperger, 1944; Wing, 1981). The year before Asperger’s landmark arti-cle, an even more influential article had been written by the American psychiatrist Leo Kanner, outlining the characteristics of what is typically referred to as ‘classic’ autism (Kanner, 1943).

Both Wing’s and Asperger’s case studies differed from Kanner’s in that the children presented with above-average or high intelligence, had experienced no delays in acquir-ing speech and presented some social skills. However, these cognitive and social compe-tencies were compromised by a number of marked eccentricities that have since become the hallmark features of AD: a stilted and formal style of speech, the acquisition of highly specialised knowledge in restricted domains and difficulty in comprehending non-literal uses of language, such as puns, metaphors and jokes.

Following a series of clinical studies deemed sufficiently reliable to warrant its inclu-sion as a discrete mental disorder (Volkmar et al., 1994), Asperger’s syndrome made its psychiatric debut in the DSM-IV in 1994 under the term AD. In order to qualify for this new diagnosis, an individual needs to present symptoms indicating social impairment and restricted behaviour (as for autism), but without any history of speech or cognitive delay, or the presence of any of the other symptoms that would qualify for a diagnosis of autism (APA, 1994).

Since the publication of DSM-IV, however, numerous authors have claimed that AD is indistinguishable from HFA and that, in any case, the criteria for AD as outlined in the DSM are effectively nested within those for autism (Mayes et al., 2001). Indeed, it has been argued that the DSM-IV criteria for AD are so similar to those for autism that even the original cases described by Asperger would today end up with a diagnosis of autism (Miller and Ozonoff, 1997). In a study of 26 children who had been diagnosed with AD, 20 met the full DSM criteria for autism, and none could be confidently assigned to the AD category alone (Tryon et al., 2006).

In the years, since the publication of DSM-IV, a substantial non-academic litera-ture has evolved around AD. Guides for parents and teachers have been published in great numbers, along with many often celebratory fictional and autobiographical accounts of AD, creating a discourse around Asperger’s syndrome that reflects its counterpart around autism (see Hacking, 2009, 2010). Clearly, much has become invested in the concept of Asperger’s syndrome/disorder, both culturally and clini-cally. Many accounts of the concept centre on the central protagonist’s quest to obtain an ‘official’ diagnosis, despite the shortage of empirical evidence for a clear cognitive and behavioural profile of AD. Meanwhile, media, cinema and literature have circu-lated popular representations of Asperger’s syndrome (Murray, 2008), so much so that individuals involved in high-profile crime stories are sometimes ‘diagnosed’ with the

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condition solely on the basis of speculation.2 In scientific terms, AD has proved to be rather an elusive category, not dissimilar to multiple personality disorder (MPD), which lost its DSM status in the last revision (DSM-IV) before which it had generated a similar degree of public awareness as AD. Philosopher Ian Hacking (1995) has referred to MPD as a ‘transient mental illness’ in the tradition of historical curiosities such as hysteria and fugue: disorders that emerge out of social and historical circum-stances rather than genuine neurological phenomena. There are several critiques of AD (indeed of autism more generally, such as Timimi et al., 2011) that challenge more directly its status both as mental disorder and disability. In particular, the con-cern with children’s obsessive and ‘unusual’ interests has been criticised as patholo-gising difference (Allred, 2009), and it is recognised that such strongly focused interests can become professionally useful in later life, thereby challenging the notion that such children are in any way ‘impaired’ (Molloy and Vasil, 2002). Allred (2009) likens the current status of AD to that of homosexuality in the 1970s before the DSM was revised for its third edition following protests by gay rights groups and gay psy-chiatrists themselves. It is argued by some that AD is simply a convenient way of labelling as ‘ill’ those whose character traits ‘fit poorly with the ethos of our current business and consumer culture’ (Moloney, 2010: 165).

Mental health online and the Asperger community

However short lived the life of AD as a diagnostic category may turn out to be, its social and cultural impact may prove to be less transient. Since the mass uptake of the medium in the late 1990s, numerous websites dedicated to Asperger’s syndrome have been cre-ated, some of them becoming extremely successful. Wrong Planet is perhaps the leading voice of the community, a site boasting over 62,000 members in early 2012. Another extremely active site started in 2004, aspies For Freedom, has close to 50,000 members. Despite being set up by individuals with AD, and promoting the term ‘aspie’, these sites openly declare support for the spectrum concept on their homepages and use the terms ‘Aspergers’ and autism interchangeably.

The use of the Internet by autism and Asperger communities alike has been consid-ered an important process in the development of a ‘self-advocacy’ movement for these groups (Brownlow and O’Dell, 2006; Chamak, 2008). Autism advocacy groups first appeared in the 1970s, but these were largely organised by parents rather than those with autism themselves, and were driven by materialist concerns to have autism classified as a ‘disability’, thus making it eligible for certain benefits (Silverman, 2012). The mass uptake of the Internet in the late 1990s saw a shift towards an understanding of autism as a culture rather than a disability (Brownlow and O’Dell, 2006). Although the community has frequently drawn on essentialist discourses informed by neuropsychological or bio-logical constructions of autism, these can be regarded as empowering rather than disa-bling, and have been used to create discrete ingroup and outgroup labels: non-autistic individuals are routinely referred to as neurotypical (NT) and those with AD as ‘aspies’. In the interests of constructing positive portrayals of AD, NTs may be ridiculed and autistic traits celebrated, representing a complete reversal of the offline situation (Brownlow, 2010).

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Among the many topics debated by AD online community members are the possibil-ity of creating an aspie-only island community (the ‘Autfinity project’); the identifica-tion of numerous subtypes of AD such as ‘deep divers’ (individuals who become intensely preoccupied with a specific interest) and ‘scanners’ (those with large numbers of dispa-rate interests) (Giles, 2007); how to manage relationships with NTs, particularly those of a romantic or sexual nature; and, most typically, shared stories about which repetitive or obsessive behaviours are symptomatic of AD, or autism, which are common features of mental health websites in general (Giles, in press).

Jordan (2010) notes the correspondence between the rapid rise in autism diagnoses and the uptake of the Internet in the United States, suggesting that this may reflect ‘grow-ing public awareness’ of spectrum disorders. The link is probably no coincidence, espe-cially given the obvious attraction of online communication for individuals on the spectrum (one author quoted by Jordan claimed that the Internet is to autism what sign language is to the deaf). Research evidence from studies of autism and AD Internet users supports this, with newsgroup users benefiting from the less pressurised experience of asynchronous communication (Benford and Standen, 2009).

At the same time, the seductive image of the ‘aspie’ (which has been embraced broadly by those on the autism spectrum) attracts young people who see it as a convinc-ing explanation for their own difficulties in socialising and – as is the case in other men-tal health online communities – regard their membership of the community as a step towards obtaining an ‘official’ diagnosis. This is consistent with research on other mental health online communities, where a distinct ambivalence is displayed towards the medi-cal profession. However much mental health professionals are mistrusted and even ridi-culed, community members often see a diagnosis as a necessary qualification for legitimate community membership (Giles and Newbold, 2011).

DSM revisions and the proposed changes to AD

News about the proposed changes to AD appeared on a stand-alone website set up by the APA in February 2010, with updates following at regular intervals. Along with the insertion and deletion of several categories of disorder, one of the most significant changes to the classification system as a whole involves a shift from a categorical model of mental disorder to a dimensional model: where appropriate, individuals are to receive a diagnosis along a continuum of ‘severity’ rather than being assigned to a discrete category (such as AD).

In the case of autism, an individual can be diagnosed with a spectrum disorder if he or she demonstrates social communication difficulties and repetitive or restricted interests, these have been present since early childhood and these ‘impair everyday functioning’ (Grohol, 2012). The concept of a spectrum of autism is not new; indeed, it has been in common use throughout the developmental field since Lorna Wing first proposed it (Wing, 1996), although the existing diagnostic criteria reflect a categorical model and the shift to a dimensional model brings into operation other considerations, such as symptom ‘severity’ (which will be used to position a client on the spectrum).

The DSM-5 proposal has been criticised by numerous psychologists and other health professionals in the media, and in the academic literature by leading figures such as

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Lorna Wing herself (Wing et al., 2011), who argues that there are important theoretical and clinical arguments for separating social interaction from general communication impairment (the proposal is to collapse these into a single category of social communica-tion). Wing et al. have also criticised the requirement that symptoms be present in early childhood, since it makes retrospective diagnosis difficult for individuals presenting in adolescence or adulthood, and also places unreasonable demands on clinicians to iden-tify potential symptoms in infants. In addition, there is the ethical question of whether changing diagnosis might actually constitute ‘very serious harm’ for individuals who are forced to reconfigure their long-established iatrogenic identities (Charland, 2004). Since the original appearance of the DSM-5 proposals in early 2010, several have been aban-doned following expert opposition (e.g. the new category of ‘Internet addiction’), or extensively modified (e.g. a change from ‘sexual addiction’ to ‘hypersexual disorder’). Despite the criticism of many in the developmental psychology field there are, at the time of writing, no plans to alter the changes to AD or autism generally. Irrespective of the eventual DSM-5 criteria, the data reported in this article should be of intrinsic interest in their context as interactive social dynamics that shape the representation of AD (and indeed the autism spectrum) in the online community.

The reaction of the online Asperger community

The data in this study were obtained by identifying discussion threads on online forums whose titles and opening posts (OPs) made explicit reference to the DSM-5 and the pro-posed changes, notably the removal of AD, over a 2-year period from the first announce-ment in February 2010 to the commencement of this in early 2012. Forums were included in the analysis if they belonged to stand-alone websites that contained the word Asperger in their title (though typically they refer to autism as well). Some forums did not feature any such threads, such as Aspergernauts (http://www.aspergernauts.co.uk) and Aspergers Girl (http://www.aspergersgirl.com), both of which seem to represent school age com-munities, and the site Asperger Aide France (http://www.aspergeraide.com), which may reflect a general lack of authority of the APA and DSM in that country. They were also only considered for analysis if they consisted of at least 10 posts, since several threads started across the forum sample were simply not responded to, either because they did not invite debate, or because they were simple requests for information that were resolved through providing a link or a pasted excerpt from another online document.

The decision to sample material from topic-based threads rather than performing a broad content analysis of all discussion forum material was largely a matter of conveni-ence, but it is consistent with the author’s preferred method of working at the level of the discussion thread itself, which ensures that content is anchored to a coherent theme. This might not be a problem if one were merely performing a descriptive analysis of topics discussed by community members, but here, the unit of analysis was the rhetorical posi-tion maintained by each poster as realised by the specific choice of words, frame of refer-ence and the broader discourses drawn on (Billig, 1987). This method may have the effect of under-representing the topic of DSM in the various communities, but it ensures at least that discussion is anchored to the topic of diagnosis rather than a broader discus-sion about the value of the AD/autism spectrum disorder (ASD) distinction.

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In total, 19 threads were analysed, several of which stretched to well over 100 posts. Twelve of these were found on the forum Wrong Planet (http://www.wrongplanet.net), three on aspies for Freedom (www.aspiesforfreedom.com), two on Aspergers and ASD UK Online Forum (http://www.asd-forum.org.uk) and two on the German site http://www.aspies.de. Each post in these threads was coded according to its author’s position on the DSM-5 proposals, and the data were reduced by grouping together posts that advanced similar rhetorical arguments. Altogether, six discrete categories of posts were identified, and these are described in the following section along with illustrative quota-tion. The first category, acceptance, consists of posts that broadly supported the DSM-5 proposals. The following four categories – fear, rejection, defiance and suspicion – con-tained posts arguing against the proposals. The final category, reassurance, consists of posts that supported the proposals but whose function is largely to pacify fellow com-munity members who feared negative outcomes from the change in diagnostic classifi-cation. Quotations in the text are assigned unique references that indicate the website, the number of the thread and the message number of the thread (therefore, WP3:6 is taken from the sixth post of the third of 12 threads taken from Wrong Planet).

Acceptance

In the threads analysed, a large number of community members posted in favour of the DSM-5 proposals, arguing that the inclusion of AD in the spectrum represents a positive step and fosters a stronger sense of belonging within the autism and AD community as a whole. These members are concerned that the AD category reflects an underlying assumption that AD individuals are intellectually superior to people with an autism diag-nosis, a mistaken belief grounded in an earlier, unenlightened era when AD was thought of as autism with high IQ:

Asperger’s is kind of an outdated thing that was identified back when they thought severity of autism was determined by IQ, which we are seeing more and more that it’s not. (WP4:20)

The supposed elitism of AD has been a sticking point in the online community since its inception, with frequent debate over the distinction between AD and ‘high-function-ing’ autism. Several members declared that they were happy to see the back of the Asperger label and that it simply served to divide the AD/autism community:

I don’t like the ‘them and us’ mentality that the Asperger label can foster. (WP9:79)

Another argument came from those posters who believed that the ‘them and us’ con-struction should be used to distinguish ‘spectrumites’ from NTs (or individuals outside the autism/AD community). The general consensus among those in favour of the pro-posed changes is that people on the autism spectrum share more characteristics with one another than any of them do with NTs, and that the spectrum concept reinforces the soli-darity of the community as a whole.

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At the same time, it is recognised by many members that AD as a category has played an important role in identifying autism in individuals who would otherwise remain out-side the community (insofar as they would not meet the criteria for an autism diagnosis). Here, the work performed by AD is to broaden the spectrum, and this has been useful in allowing access to services and other benefits of a mental health diagnosis. Nevertheless, their view is that the category is no longer needed to perform this function:

The only point of calling it Asperger’s in the first place was to get it re-accepted as autism in a time when autism had come to mean something that even Kanner’s original patients would have had a hard time getting diagnosed as. It’s been re-accepted. Purpose served. (WP8:53)

In conclusion, then, the broad argument for accepting the DSM-5 proposal seems to hinge upon the belief that solidarity in the autism/AD community is more important than diagnostic accuracy and differential treatment (or, in some cases, benefits). In this formu-lation, the ‘spectrum’ is not simply a re-branding of autism/AD but a scientific truth that has simply been awaiting discovery, and the new DSM has taken a step forward in recog-nising its validity.

Fear

Probably the most dominant concern for those opposing the DSM-5 proposals is that they will tighten the diagnostic net and that many people currently in receipt of an AD diag-nosis will lose the benefits it brings (primarily access to mental health and other ser-vices). In some cases, it was argued that the spectrum revision would require all ‘aspies’ to be rediagnosed, even though there has been no serious suggestion that this would be the case (it is hard to imagine any health authorities financing such a step). The key notion here is the ‘removal’ of diagnostic status:

Some problems I fear may occur with it is that we would no longer be eligible for accommodations, vocational rehabilitation, and other services. In other words if our disability status is removed we would be on our own and the government would not be able to help us. (AFF5:1)

These concerns were the source of several heated arguments in the threads analysed here. In such instances, a worried member typically began a thread calling for protest about the potential drawbacks of the proposals, and was accused of exaggeration by other mem-bers who, in many cases, saw the benefits of the spectrum as outweighing the disadvan-tages of the separate categories. The following is an example:

Spectrum individuals who are better able to mirror greater society will most likely not qualify for a diagnosis under the most recent revisions … But sadly, we may be heading back to the days of character deficits. Now it appears that the terminology is not all that will change with the DSM-5 … Not only will tens of thousands of spectrumites – if not more – be at risk for going back to the days when we were thought of as rude, nervous, or incompetent; but equal numbers of spectrumites will happily be denied the services they need. (WP1:1)

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This particular instance is ripe with extreme case formulations about the high numbers of ‘spectrumites’ who would be ‘at risk’ of losing diagnosis and thereby ‘denied … ser-vices’. The scenario envisaged is a return to an unenlightened era where individuals currently diagnosed with an illness or disability would have been held personally respon-sible for their behaviour. While none of these constructions were directly challenged by subsequent posts, the broad implications (feared loss of diagnostic status) were dismissed by several members promoting arguments of the type described under the ‘Acceptance’ category

It is not only the threatened removal of services that worries community members. Along with diagnosis comes personal identity, and for some, the potential loss of the label brings fears for their own selfhood. For the first poster in the following, being returned to the NT community would expose her socially inappropriate behaviour, again, to charges of personal responsibility. For her, the AD label functions as an ‘excuse … for being odd’, and its removal would mean that her oddness could be classified as simple malfunction. The latter makes a similar point, more succinctly, arguing that the AD diag-nosis explains an essential component of his psychobiological make-up. In an emer-gency, a medical doctor can make important decisions based on blood type. A frequent comment in the AD community is that an accurate diagnosis provides health profession-als, service providers and employers with similarly important information when dealing with the individual:

Soon enough, I’ll be NT. Except I won’t be NT. I’ll be an NT who paces constantly, touching everything in my path. I’ll be an NT who has meltdowns and can’t socialize. I’ll be an NT who doesn’t qualify for services, has no excuse or reason for being odd, and is … well, broken. (WP9:22)

I know who and what I am, and the AS label is about as significant as my blood type. (AFF8:2)

One of the less obvious concerns that some members of the community have about the DSM-5 proposals is that it potentially provokes guilt about the type of diagnosis they hold. Assuming that the previous fears are unfounded, and anyone with an AD diagnosis can be neatly reclassified as autistic, this diagnostic switch opens up concerns about authenticity. Am I worthy of a seemingly more serious diagnosis?

I would feel almost presumptuous calling myself autistic, like I was borrowing a label that rightfully belongs to someone who is having more severe problems than I am … It seems unfair and presumptuous of me to say I am autistic like [those] who are struggling so much more than I am. I don’t want to distance myself from them, I just think that having truthful and accurate names for medical conditions is useful and more honest. (WP9:46)

I won’t call myself autistic. Somehow that seems an insult to the families who do have to deal with a relative suffering from traditional autism. (WP10:4)

It could be argued that these defences against the autism label are simply an example of the elitism that the spectrum concept seemingly resolves – ‘traditional’ or ‘severe’ autism is the burden of an outgroup that is ‘struggling’, or worse, parents having ‘to deal with’ an autistic child. These claims are couched in magnanimous language about

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the presumptuousness of inheriting a diagnosis of autism, as if the AD diagnosis is sim-ply not to be taken as seriously by society, however important to its recipients.

Rejection

The second category of responses in opposition to the DSM-5 proposals involved out-right rejection of the proposals, not on the grounds that they are inaccurate or unfair, but from the conviction that the DSM – and indeed the whole of psychiatry – is either biased and/or unscientific:

The DSM manual is a guide, and is not based on research or empirical data, it’s merely OPINION. It mainly serves the drug companies. (AAUK1:15)

Psychiatry isn’t scientific. I think it can do better than it currently is, even if it still won’t be scientific. (WP5:34)

Claims of bias towards drug companies, and the psychopharmacological approach in general, are not unusual in critiques of psychiatry and the DSM (see Bentall, 2009, for a particularly powerful example). However, the majority of community members did not really adopt a critical position towards medicine more generally. The most damning criti-cisms of psychiatry (and psychology) came from members who compared these disci-plines unfavourably with hard science, typically neurology and genetics. For the first poster in the following, these constitute ‘real science’ and for the second, disciplines based primarily on observation are inevitably flawed:

Psychiatry will never knows the answers of those questions till Neurology and real science find out a way to biologically define autism and biologically detect its genes and its impact on the brain … Psychiatry is too biased and subjective. (WP5:38)

Advances in neurology and genetics, including different tools for measuring brain activity, may create new categories where – at the moment – psychologists and psychiatrists can only see similar external behaviors. Similar behaviors may be caused by different underlying neurological mechanisms, and our behavior-based classification may be superseded. (WP9:50)

Taken at face value, these arguments might seem to support a critical psychiatry position, or even an anti-psychiatry stance. However, it is more common for members to repro-duce ‘brain stories’ (Ortega and Choudhury, 2011) about autism, drawing on constructs such as ‘wiring’, thus buying into a linear progress narrative that places faith in the abil-ity of science generally to eventually unlock the ‘truth’ about autism (vs AD). This nar-rative is supported by the frequent citing of research findings that claim to have demonstrated different neurological profiles for the two categories. Allied to these argu-ments are a number of members who cautiously supported the proposals, seeing them as a shift from autism as mental disorder to autism as disability (or ‘different wiring’).

Whether objecting to the proposals or not, the discussants in this category tend to take an uncritical stance on science as a vehicle of truth or even salvation: psychiatry and the psy-disciplines generally are thus rejected as ‘unscientific’, DSM and all.

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Defiance

A number of posts in the threads opposed the changes simply on the grounds that there was little the DSM could actually do to damage the AD community itself. Many of the members were quite hostile to the spectrum concept, claiming that they did not wish to be ‘lumped together’ with autism, or, in the following German thread, geworfen (thrown) into a single category containing schwer geistig Behinderten (severely mentally disa-bled) individuals:

Super! Dann werde ich mit schwer geistig Behinderten LFAs in eine Kategorie geworfen. (DE1:4)

For these members, AD has ‘achieved’ too much over the last two decades, spawning an entire culture (including the major websites) for it to be washed away simply by chang-ing diagnostic criteria:

It’s also tied to all kinds of books, videos, documentaries, support groups, history to Hans Asperger that getting rid of is a bad idea. (WP4:37)

In one thread, a discussion evolved around some members’ claims that AD has actu-ally become ‘cool’ through its representation in the media and in popular culture, and through the community’s tendency to identify famous individuals in contemporary and historical culture as ‘aspies’, notably Albert Einstein:

However this omission from DSM V could potentially undo all the good work that has been done to make AS cool and make the public aware. (WP8:31)

I think it is something that could become ‘cool’ in the future especially if people make references to Einstein etc. (WP8:34)

While the former of these comments is rather cautious, the overall tone of posts catego-rised under ‘Defiance’ was more confident, with members believing that the aspie com-munity is now sufficiently powerful to survive independently of professional discourses around mental health and psychology. Indeed, a number of members expressed indigna-tion at the fact that the DSM had not consulted the AD community when drawing up the proposed changes (even though the online invitation for comment seems to indicate a more democratic process than the arcane editorial decision-making behind previous DSM revisions). The sentiment of defiance led some to claim that aspies themselves have become the experts and that the weight of sheer numbers will eventually command rec-ognition from the psychiatric profession:

I am an aspie, will always BE an aspie, and the idiots writing the stupid psych books should come visit our world and see why it is that we don’t want them to get rid of our label. (WP7:18)

At some point, it’s going to be those with Asperger’s Syndrome that are the ‘authority’ as our numbers will greatly outweigh the opinions of those who put together the diagnostic manual. (WP7:16)

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Suspicion

The fourth and final category of arguments opposing the DSM proposals frame them as politically motivated. In general, these contend that the APA is reacting to sensationalist media coverage of ‘the autism epidemic’ and claims that the condition is being ‘over-diagnosed’ and that mental health services are being over-stretched. Eradicating the AD category will enable the medical authorities to tighten the eligibility criteria:

the DSM-5 committee appears to be acting in consort with clinicians who believe there is a presence of ‘over-diagnosis’ of spectrum conditions in the U.S … [the APA] seems to want to reverse the clock back to 1993, simply because the social services, educational, and advocacy worlds are not yet able to accommodate the numbers of people who are on the spectrum. (WP1:1)

They want to ‘contain the epidemic’. There never was an epidemic. There were just more people being reliably diagnosed that won’t be in the future. (WP6:55)

While such arguments could be constructed positively (as some of the comments in the ‘Fear’ category suggest, there are some AD members who believe themselves to be unworthy of an autism diagnosis), overwhelmingly, members who took the line of suspi-ciousness were hostile to the proposals. In some cases, extreme case formulations were made about the potential knock-on effects of removing the AD category:

Merging AS with high functioning autism will lead to fewer AS diagnoses, less practical support for AS diagnosees in the workplace, which in turn will lead to higher unemployment amongst the undiagnosed who still struggle with the same symptoms and – by extension – a higher rate of alcoholism, heart disease and suicide. (WP8:39)

Reassurance

This category refers to arguments broadly in favour of the proposals but were framed in such a way as to try and quell the fears voiced by fellow members. They cast the propos-als in a positive light without necessarily invoking a scientific or other rationale to vali-date them. For some, they would not lead to under-diagnosis but actually to still greater inclusion:

Too many actual Autistics are NOT being diagnosed now, because the whole system of diagnosis is too convoluted and confusing. Simplifying it to include, and NOT exclude anything already being used as criteria, in one single diagnosis, with levels of severity, allows for far more people to be diagnosed with the new criteria that are being totally missed with the current criteria. (WP2:48)

Others simply made light of the proposals, calling Asperger(’s) a ‘stupid’ or unpro-nounceable name, that Hans Asperger was no longer relevant to the modern conception of the condition, or that they had personally been using AD interchangeably with HFA for some time already. Several posters noted that medical terminology is constantly changing, and that despite formal changes in response to scientific progress, old and

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inappropriate names have proved resistant, at least in common parlance. As the third comment below indicates, this is also the case for some mental disorders dropped from the DSM in previous editions:

In all likelihood, Asperger’s will remain in the popular parlance, and continue to be used as a descriptor by many both on and off the spectrum. (WP7:12)

like how malaria’s name hasn’t changed despite people realizing over a hundred years ago that it wasn’t caused by mal-air/bad air. (WP8:2)

People still say ‘ADD/Attention Deficit Disorder’ and that hasn’t existed as a diagnosis since 1994. (WP9:30)

Some of the most interesting posts in this category came from members who worked up elaborate parallels between AD, autism and the spectrum to other medical classifica-tions. These referenced the difference between colds and flu, differing severity of condi-tions like cancer and cerebral palsy or even different manifestations of a broken leg. Such parallels conflate the concept of autism with physical illness in a way that might only be expected in a culture strongly wedded to the biopsychological model of mental health.

In contrast to the medical parallels, however, comes the following ingenious compro-mise suggested by one member who likens the AD/autism distinction to the contrast between scientific and lay terminology of botanical species (although the argument only works if one buys into the idea that AD is equivalent to ‘mild autism’):

Much like the scientific name of an animal or plant, the technical name of mild autism describes how it fits in relation to other conditions, while the common name of Asperger’s describes the culture and literature already associated with the condition. Garlic, Allium sativum, is technically in the onion genus Allium, because it is genetically and physically similar, but it is not thought of by most as an onion. It is thought of as garlic, because that word is connected to our literature and attitudes towards the plant. (WP4:38)

Discussion

This rhetorical analysis of the AD online community’s responses to the proposed DSM-5 changes identifies a number of the arguments that community members have utilised in order to voice their opposition or approval. I have not provided any statistical data that might demonstrate a predominance of any one of the six categories of argument, or even a broad indication of how many community members opposed or approved the propos-als, because I consider such a reductionist analysis to be highly unreliable. The fact that only 19 analysable threads could be identified across the major AD forums suggests that the technicalities of the DSM are not high on the agendas of forum users, particularly where the community is young or non-English-speaking (the two German threads ana-lysed reproduced mainly the categories found in the other forums). Nevertheless, once discussions got going, they occasionally became heated and revealed quite stark con-trasts between members’ positions. Most of these revolved around the question of whether the merging of autism and AD into a ‘spectrum’ would result in fewer individu-als receiving any diagnosis at all, and whether this in turn would deprive members of

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valuable social and mental health services. Despite several members’ earnest (and on occasions quite aggressive) attempts to reassure doubters that this was not the case, some early research evidence would seem to support the more pessimistic beliefs. McPartland et al. (2012) revisited 933 individuals from the field trials that informed the DSM-IV and rediagnosed them according to the proposed criteria. A total of 75 per cent of those with a previous diagnosis of AD would not receive a diagnosis of autism under the new crite-ria; 26 per cent of those with a previous diagnosis of autism also failed to meet the new criteria.

Another contentious issue within the community concerns the supposed ‘elitism’ of the categorical classification system, whereby AD is viewed as a ‘milder’ form of autism with different service requirements. Some members posted detailed accounts of bygone childhood experiences where a diagnosis of autism condemned them to the company of very low-functioning playmates, and welcomed the AD category as a more accurate and appropriate description of their condition. Supporters of the proposed changes argue that the spectrum concept, reflecting changes in definition and scope of autism, does away with an outdated and divisive distinction between HFA and AD, and that it is preferable to think of individuals as either ‘low-functioning’ or ‘high-functioning’. The counter-argument is that the spectrum concept is equally elitist, based on ‘symptom severity’ with no meaningful cut-off point between ‘low’ and ‘high’.

Many community members seemed to be taking the DSM changes in their stride, dismissing others’ fears as insubstantial or irrelevant, or just accepting the fluctuations of the psychiatric world as inevitable and unavoidable. Some were adamant that the ration-ale for the changes was based on sound scientific evidence; others rejected them outright, claiming that psychiatry is inherently unscientific and that hope for the future lies in disciplines such as neurology and genetics. Some believed that the highest authority on matters autistic should be the aspie community itself, part of a dynamic autism culture that will continue to flourish irrespective of the periodic whims of the APA (and it must be remembered that autism itself only appeared in the third edition of the manual, pub-lished in 1980).

In this respect, the discussions reflect the gradual shift over time towards self-advo-cacy within the autism community. In conjunction with various academics, clinicians and other professionals, it has been the parents of individuals with autism who have shaped the history of the condition (Silverman, 2012). Now, the Internet has handed those individuals a powerful voice that has the confidence to potentially challenge medi-cal authority. It may be that such communities come to assume centre stage in future debate over diagnostic categories, or even that scientific and medical concerns for such things as diagnostic accuracy are eventually forced to give way to community interests.

At this point, I would like to return to the question posed in the opening paragraph and consider what impact the DSM’s insertion and removal of a new diagnosis has had on the community of individuals in receipt of that diagnosis – in this case, AD. One thing that is clear from these findings is that the ramifications of the DSM-5 proposals have been felt in the Asperger community long before the publication of the new edition of the manual. The concept of the autism spectrum has been warmly embraced by many mem-bers, with the neologism ‘spectrumites’ appearing with some regularity, and some mem-bers are vociferous supporters of the proposed changes. Well before they have been

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carved in stone, many aspies seem prepared to adopt a new autistic identity. For others, however, the proposals are deeply disconcerting, whether they have concerns about enti-tlement to services, or simply indignation at the apparent failure to engage the commu-nity in psychiatric decision-making.

One of the difficult tasks with evaluating the impact of diagnostic change is that deci-sions – and the community reactions to them – do not take place in a vacuum. Both the APA and the online Asperger community are informed by the same scientific research and choose to respect or dismiss it accordingly. Just as the DSM proposals are informed by a scientific rationale, the arguments of community members draw on the pronounce-ments and publications of experts like Baron-Cohen and Wing, and popular authors such as Tony Attwood and Temple Grandin, with frequent links to news items about the latest research. Many community members work in scientific disciplines themselves and post insider information about developments in neuroscience and other areas. There are diverse agendas on both sides of the fence.

Another question that needs to be considered is the extent to which the online com-munity represents the wider community of people with AD. This is a contentious issue in online research because representativeness is impossible to establish (mere community numbers tell us little) and because the relationship between offline and online communi-ties has become so blurred in recent years as to make the distinction superfluous (Baym, 2010). One thing that seems clear is that online culture is pretty firmly established and that the wider culture can scarcely afford to ignore it. aspie culture has grown up hand in hand with the Internet: it is hard to imagine how it could have evolved without it.

It is also worth reflecting on the fact that this is the first online revision of the DSM. By posting the proposals online 3 years prior to publication, and inviting comment from interested parties, it would seem that the APA is exploiting the democratic potential of the Internet to progressive ends. At the same time, they cannot ignore the powerful new voice that the Internet has given service users. For the first time in history, thousands of people with the same psychiatric diagnosis are exchanging ideas and recounting experi-ences, and their archived discussions constitute an important element in contemporary society. Much effort has been invested building up a culture around AD, both online and offline, and only time will tell how resistant it is to the vagaries of psychiatric classification.

Funding

This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.

Notes

1. I use the initials AD throughout this article in order to remain consistent with DSM terminol-ogy (the frame of reference in this study).

2. A recent case is the massacre of 27 people in a Connecticut nursery school on 14 December 2012 by Adam Lanza. Many initial reports mentioned AD as a possible mental health diag-nosis, although this seems to have been based on interviews with former schoolmates rather than any medical history. Certainly, many sources were happy to associate the label with stereotypical descriptions of Lanza as a ‘nerd’ and a ‘loner’.

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Author biography

David C Giles is Reader in Media Psychology at The University of Winchester. He researches dynamic interaction in online discussion, particularly in the areas of mental health and cultural fandom, as well as more broadly psychological aspects of media audience activity, with a particu-lar interest in celebrity.

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