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Journal of Social Work in Disability & Rehabilitation Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/wswd20
Concerns About Identity and Services Among People with Autism and Asperger's Regarding DSM–5 Changes a
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Jessica L. H. Spillers , Leonard M. Sensui & Kristen F. Linton
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Myron B. Thompson School of Social Work , University of Hawaii at Manoa , Honolulu , Hawaii , USA b
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School of Social Work , University of Nevada, Las Vegas , Las Vegas , Nevada , USA Accepted author version posted online: 09 May 2014.Published online: 08 Aug 2014.
To cite this article: Jessica L. H. Spillers , Leonard M. Sensui & Kristen F. Linton (2014) Concerns About Identity and Services Among People with Autism and Asperger's Regarding DSM–5 Changes, Journal of Social Work in Disability & Rehabilitation, 13:3, 247-260, DOI: 10.1080/1536710X.2014.912186 To link to this article: http://dx.doi.org/10.1080/1536710X.2014.912186
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Journal of Social Work in Disability & Rehabilitation, 13:247–260, 2014 Copyright # Taylor & Francis Group, LLC ISSN: 1536-710X print=1536-7118 online DOI: 10.1080/1536710X.2014.912186
Concerns About Identity and Services Among People with Autism and Asperger’s Regarding DSM–5 Changes
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JESSICA L. H. SPILLERS and LEONARD M. SENSUI Myron B. Thompson School of Social Work, University of Hawaii at Manoa, Honolulu, Hawaii, USA
KRISTEN F. LINTON School of Social Work, University of Nevada, Las Vegas, Las Vegas, Nevada, USA
The Diagnostic and Statistical Manual of Mental Disorders (5th ed. [DSM–5]; American Psychiatric Association, 2012) now includes a new autism spectrum diagnosis (ASD) with previous separate diagnoses of autism removed. This study explores the concerns of people with Asperger’s syndrome (AS) and autistic disorder (AD). Discussion forum data of people with AS and AD (N ¼ 76) were analyzed using phenomenological, inductive-content analysis to gather qualitative data about the concerns of people with AS and AD regarding the changes in the DSM–5. People with AS and AD were concerned about identity, community, the cure movement, and services. They also discussed using advocacy and solidarity to address their concerns. KEYWORDS advocacy, Asperger’s, autism, autism spectrum disorders, DSM–5, identity, services, solidarity
The Diagnostic and Statistical Manual of Mental Disorders (5th ed. [DSM–5]; American Psychiatric Association, 2012) includes a new autism spectrum diagnosis (ASD) with previous separate autism-related diagnoses removed (e.g., Asperger’s syndrome [AS], childhood disintegrative disorder, autistic disorder [AD], or pervasive developmental disorder–not otherwise specified Address correspondence to Kristen F. Linton, Assistant Professor, School of Social Work, University of Nevada, Las Vegas, 4505 S. Maryland Pkwy, Box 455032, Las Vegas, NV 891545032, USA. E-mail: [email protected] 247
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[PDD–NOS]; American Psychiatric Association, 2000, 2012). Current literature about the DSM–5’s change to ASD has focused on validity, specificity, and reliability (Frazier et al., 2012; Mayes, Black, & Tierney, 2013). Relatively little research has been conducted regarding the concerns of those who will be most affected—people with previous diagnoses of AS, AD, and PDD–NOS. The AS and AD community has been seen as a chronically mentally ill population and not fit to provide input into the definitions of AS and AD because of their ‘‘disease’’ (Bagatell, 2010; Bumiller, 2008; Shelly, 2004). Within the past 20 years, however, through self-advocacy and solidarity, this group of people has come together to say that they would rather embrace and shape their own identity versus allowing society to do it for them (Bagatell, 2010; Bumiller, 2008; Harmon, 2004; Shelly, 2004). This study used Internet discussion boards for and by those with AS and AD to gather qualitative data about the reactions of people with AS and AD regarding the changes in the DSM–5.
DSM–5 CHANGES Rather than looking at the field of pervasive developmental disorders as a set of separate diagnoses, each with their own unique traits, diagnosticians are now charged with looking at a spectrum of symptoms and the severity of those symptoms to diagnose a person with ASD. The new diagnostic criteria have been reduced from three (social=communication deficits, fixed behaviors, and repetitive reward-seeking behaviors) to two domains (American Psychiatric Association, 2012). All social and communication deficits and fixed behaviors domain criteria need to be met to be diagnosed. There will also be the requirement to meet two of four criteria under the repetitive reward-seeking behaviors domain (American Psychiatric Association, 2012). Many have felt the change was necessary to increase specificity (true positives)—especially because there has been some confusion about the overlap of criteria between AS and AD (Sharma, Woolfson, & Hunter, 2011; Skuse, 2012). Research has found that specificity was high for people with previous diagnoses of AD, whereas those with AS and PDD–NOS are less likely to receive diagnoses of ASD (Frazier et al., 2012; Mayes et al., 2013).
THE ‘‘NEURODIVERSITY’’ MOVEMENT People with AS or AD validate their opinions about their diagnoses through the lens of neurodiversity (Bagatell, 2010; Bumiller, 2008; Jaarsma & Welin, 2012; Kapp, Gillepsie-Lynch, Sherman, & Hutman, 2013; Ortega, 2009). It should be noted that many people with AS or AD prefer to be called an ‘‘autistic person,’’ rather than a ‘‘person with autism’’ (Bagatell, 2010; Bumiller, 2008; Kapp et al., 2013; Ortega, 2009; Shelly, 2004). There remains dispute (Corrigan, 2007; Jaarsma & Welin, 2012; Ortega, 2009), however, and
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so for the purposes of this article, person-first language (e.g., people with AS or AD) will be used. Neurodiversity is a term and movement credited to Judy Singer—an activist and woman with Asperger’s (Ortega, 2009). Neurodiversity seeks to take the stigma out of AS and AD and replace it with the acceptance of differences. Embracing characteristics of what some professionals might call an ‘‘illness’’ allows those with AS and AD to battle stereotypes of either being severely mentally impaired or savant-like, loner geniuses (Ortega, 2009). Many organizations created by and for those with AS and AD have been founded in the past 20 years—including the Autistic Self-Advocacy Network (ASAN) and Autism Network International (ANI). Central to these organizations’ focus is the reimaging of AS and AD. Rather than seeing it as a disease to be cured, they see it as an alternate way of thinking—something that cannot be removed from the person (Bagatell, 2010; Bumiller, 2008; Kapp et al., 2013). Many who support the neurodiversity movement claim a cure is unnecessary, because AS and AD are simply different ‘‘ways of being’’ that should be accepted in society (Bagatell, 2010; Bumiller, 2008; Ortega, 2009; Shelly, 2004). However, there are those with severe AS and AD who support the cure movement, because the struggles of daily living are too difficult (Bagatell, 2010; Kapp et al., 2013). According to the neurodiversity movement, society should be inclusive, accept people with their differences, and provide help in the sense that those who are wheelchair bound have ramps provided for them in the community. This is representative of the social model of disability, which focuses on structural barriers that limits full inclusion of people with disabilities into society (Ballan, 2008). Central to the identity of people with AS and AD is their diagnosis.
IDENTITY AND STIGMA By developing ASD, stigma attached to each previous diagnosis could potentially be eliminated. Everyone would be in the same category. Although the change would appear to support the neurodiversity movement by eliminating the stigma related to a particular mental health diagnosis (Corrigan, 2007), there are those who worry about the repercussions of changing from AS and AD to ASD. Those who have identified with being an ‘‘Aspie’’ (AS) or being an ‘‘autistic’’ (AD) might go through an identity crisis—especially if their diagnosis is changed or taken away (Vivanti et al., 2013). For instance, some people with AS are concerned they will be seen as less intelligent if their diagnosis is changed from AS to ASD—the word autism being the trigger for concern (Jaarsma & Welin, 2012). A majority of those with Asperger’s and high-functioning autism (a phrase used by some clinicians and the autistic community to describe people with autism who have above-average skills in deficit areas, but a phrase not used in the previous version of the DSM)
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have long seen themselves as intellectually above those with more severe autism (Jaarsma & Welin, 2012; Vivanti et al., 2013).
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THIS STUDY In this article, we explore the concerns of those most affected by changes to ASD in the DSM–5—people with AS and AD. Through qualitative Internet-based research, we have gathered discussion board material, coded it, and analyzed those themes. Themes of identity, community, cure movement, services, advocacy, and solidarity are discussed. The new definition of ASD in the DSM–5 walks a fine line. It could help streamline research, but could also break a group of people from their culture. The neurodiversity movement aims to be accepted into society by using a social model of disability (Ballan, 2008). However, identity and stigma within the AS and AD community might pull this movement backward. The new diagnosis of ASD could separate some from this community, but could be easier for diagnosticians to use. By gathering input from those whose voice might not readily or easily be heard (people with AS and AD), our research is adding to the literature in a unique way. We have gathered pure, unaltered feedback without the presence of a facilitator in a focus group—which could be an overwhelming situation for a person with severe AD (Benford & Standen, 2009). Much literature takes the stance of looking at outside variables and asking about past experiences, but our research looks on the inside and to the future.
DISCUSSION FORUMS AND ASD Discussion forum analyses have been used in previous research. Singer (1999) called for people with AS and AD to use the Internet to voice their opinions—to see it as a ‘‘prosthetic social device.’’ Since then, research has demonstrated that people with AS and AD actively use the Internet (Benford & Standen, 2009; Goodwin, 2008; Singer, 1999). Benford and Standen (2009) found that people with AS and AD prefer asynchronous forms of communication. Discussion forums are a type of asynchronous communication, because people choose when to participate. In addition, research has also found that using the Internet for communication can be liberating among people with autism (Benford & Standen, 2009; Finkenauer, Pollmann, Begeer, & Kerkhof, 2012). Research on people with AS and AD has recently begun to use discussion forums (Jordan & Caldwell-Harris, 2012). Discussion forum data can provide access to larger, generalizable samples, decrease anxiety among people with autism, and reveal the voices of people with AS or AD who might not otherwise share their opinions in a face-to-face interaction
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(Benford & Standen, 2009; Burke, Kraut, & Williams, 2010; Finkenauer et al., 2012; Jordan & Caldwell-Harris, 2012). Challenges to analyzing discussion forum data are limited demographic data and an inability to verify diagnoses of participants (Jordan & Caldwell-Harris, 2012). However, Back et al. (2010) found that a majority of Internet users accurately identify themselves. Another benefit of using discussion forums is a lack of formal facilitation. Developing credibility as a facilitator of a focus group is challenging (Linhorst, 2004). This study demonstrated that participants might not share their feelings with a formal facilitator who is considered a professional. Participants referred to researchers as ‘‘those PhDs’’ and ‘‘experts’’ differentiating themselves from professionals throughout the discussion forum analyzed in this study. The discomfort could have been exacerbated by the general social anxiety experienced during face-to-face interactions among people with AS and AD (Benford & Standen, 2009; Burke et al., 2010; Finkenauer et al., 2012; Jordan & Caldwell-Harris, 2012).
METHODS Data Collection Discussion forum posts on WrongPlanet.net, a popular forum used by people with AS and AD, were analyzed for this study. Created in 2004, The WrongPlanet.net site has more than 70,000 users and 5,138,836 entries. These data determine that it is an active Internet discussion forum (Plank, 2013). A Google search using descriptors matching ‘‘DSM–5(V) discussion board=forum’’ and ‘‘autism’’ or ‘‘Asperger’s’’ or ‘‘ASD’’ were used to find potential discussion forums for analysis. WrongPlanet.net was selected because it was the first and largest discussion forum listed each time different Google search terms were entered. In addition, the site was accessible to the general public, no passwords were required to enter the site, and it included two discussion boards related to the topic of DSM–5. The Institutional Review Board at the University of Hawaii at Manoa qualified this study with an exempt status. The criteria for analysis targeted the discussion posts regarding the proposed AS, AD, and PDD–NOS changes in the DSM–5. Two WrongPlanet.net discussion boards were analyzed, labeled ‘‘Report of the DSM–V Neurodevelopmental Disorders Work Group’’ and ‘‘No More Aspergers in the DSM–V.’’ The first board’s discussion posts covered a period from April 18, 2009, to May 26, 2012, and the second board contained posts from September 21, 2010, to September 25, 2010. One-hundred and ninety-three posts were analyzed within both boards and participants entered between 1 and 14 posts (M ¼ 2.17, SD ¼ 2.41).
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Sample Characteristics The study sample consisted of people with diagnoses of AD (n ¼ 12) and AS (n ¼ 64). Those who identified themselves as family members, or those whose diagnoses were unknown, were not included in the study sample (n ¼ 10), as the focus of this study is the experiences of people with AS and AD. There were more males (n ¼ 42; 55.3%) than females (n ¼ 34; 44.7%) in the sample, which is representative of the autism population (Fombonne, 2005). Forty participants provided additional demographic information. Their ages ranged from 17 to 61 (M ¼ 31.95, SD ¼ 12.56) and the study’s sample included members from the United States (n ¼ 13), Canada (n ¼ 7), the United Kingdom (n ¼ 6), South Africa (n ¼ 2), China (n ¼ 1), New Zealand (n ¼ 1), and Spain (n ¼ 1).
Analysis Quotations copied from WrongPlanet.net were used verbatim within this study. Phenomenological analysis was conducted with a goal of explaining the concerns of people with AS and AD over changes in the DSM–5. No a priori hypotheses were used for analysis (Creswell, Hanson, Clark-Plano, & Morales, 2007; Padgett, 2008). Although phenomenological research often is conducted using individual interviews or focus groups, this study analyzed discussion forum data because it provided a more comfortable outlet for participants to express their concerns (Goodwin, 2008; Singer, 1999). Inductive content analysis was conducted. Consistent with phenomenological inquiry, investigators used bracketing and triangulation to enhance the rigor and trustworthiness of the study. Investigators discussed potential biases based on their personal and professional experiences prior to determining a code or theme. In addition, investigators in this study represent multiple expertise including disability, autism, and criminal justice representing triangulation of investigators. The confirmability of the study was strengthened with the use of investigators with multiple perspectives making theme agreement among multiple coders particularly credible (Padgett, 2008). The third author read through the discussion forum transcript several times to identify initial codes. These codes were raised to recurrent and prominent themes across the discussion (Ryan & Bernard, 2003). Codes were given weight with frequency, emotion, extensiveness, use of stories, and examples. An example of frequency in this study was that many participants discussed the ‘‘cure movement.’’ Emotion, which is usually observed in voice inflection and facial expressions, was often expressed in discussion forums using exclamation marks or all capitalized letters, such as ‘‘This is the gift of autism=asperger!!’’ or ‘‘ASPERGERS.’’ Discussions of concerns and resolutions over the changes to DSM–5 were themes that emerged from the data. Other themes that emerged included discussion of reliability, validity, and
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issues with the DSM in general; these themes were analyzed separately (Linton, 2014; Linton, Krcek, Sensui, & Spillers, 2013). The third author developed an initial set of codes of the full discussion board data. Each section of text could have received multiple codes. Subcodes were combined within common themes or larger categories. The authors revised the codebook several times until agreement was reached. The first and second authors coded all text pertaining to concerns and resolutions regarding changes in the DSM–5. The kappa, a widely used statistic used for agreement analysis, was used to measure agreement among coders’ analysis (Viera & Garrett, 2005). Good agreement among raters was reached with a kappa of .79 between the two raters of 193 statements (Orwin, 1994).
RESULTS People diagnosed with AS and AD voiced concerns and possible resolutions associated with the DSM–5 ASD diagnosis. Fifty participants’ responses are included in this analysis. The other participants did not discuss concerns regarding identity and services. The participants’ concerns were presented with a collective acknowledgment that the general public, policymakers, and medical professionals did not understand the issues of individuals diagnosed with AS or AD. Analyses of the discussion forum posts revealed that participants were concerned about identity, services, and how they might maintain their identity and services regardless of changes in DSM–5. Twenty-five participants discussed identity and nine participants discussed services. Participants expressed both negative and neutral feelings about identity. Ten of the participants who expressed negative feelings about identity related to changes in DSM–5 were also concerned that the ‘‘cure movement’’ was behind the changes. To resolve issues of identity and possible reduction in services, 16 participants discussed possible advocacy and solidarity efforts.
Identity: ‘‘I Think the Main Issue for Us Is How We Personally Identify’’ NEGATIVE ‘‘I don’t think it’s always helpful to be stuck with a label.’’ People with AD and AS voiced concern about the DSM–5 ASD diagnoses and the stigma associated with the new criteria. People with AS were disappointed to lose the label of Asperger’s: ‘‘Aspies will be treated a bit like their stupid.’’ A person with AS further illustrated, ‘‘I don’t want to necessarily be called ‘autistic,’ because I don’t want to be treated like I have full-on autism, you know?’’ Some individuals felt uncomfortable with the ASD diagnoses, ‘‘even if it is in point of fact true.’’
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NEUTRAL ‘‘But on the other hand, they’re all just labels and nothing else.’’ Some participants were impartial: ‘‘Am I proud to be Autistic? I don’t really care.’’ A female with AS from China stated, ‘‘Doesn’t really bother me. . . . Call it Too-Much-WoW syndrome for all I care.’’
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Cure Movement: ‘‘Asking the Question of Whether It Is Possible to Be Cured’’ Participants who feared that the cure movement led the DSM–5 changes dominated the conversation. This theme was often double coded with concerns over identity. Those with AS and AD who felt that way believed that the new ASD diagnosis had stricter diagnostic criteria; therefore, those who do not meet the ASD criteria will be perceived as ‘‘cured.’’ A small number of participants discussed the hopeful possibility of curing AD symptoms. A 20-year-old man with AS expressed that outgrowing autism is ‘‘a very valid point.’’ However, most participants expressed the improbability of a cure as ‘‘ridiculous’’ and ‘‘you don’t really ever ‘Grow out’ of being Autistic.’’ An individual added: ‘‘It’s a style of neurological processing that couldn’t possibly go away, although social skills might improve.’’ Many participants illustrated their ability to mimic social behavior to cope and function in society, which they expressed could be misinterpreted as being cured. For example, ‘‘As a child, I felt shame about having no friends. So, I made up names of friends and stories about what I would do with the friends sometimes. I masked very well.’’ Participants also expressed that they were able to ‘‘control’’ and ‘‘replicate any behavior,’’ which could be interpreted as ‘‘outgrowing’’ autism.
Services: ‘‘Won’t Be Tailored to Individual Needs’’ Some individuals voiced optimism about changes in the DSM–5 and services: ‘‘People will be much better served by merging the diagnosis into one category. Less focus on categorization, more focus on assisting the people seeking help.’’ A female with AS from Canada stated, ‘‘I really hope that encompassing it all into one dx. will help people understand that no matter how high or low functioning, services should still be provided.’’ However, more participants expressed fear that the DSM–5 ASD would reduce current services. A male with AS from the United States explained, ‘‘If they make the diagnostic changes they’re proposing, a whole bunch of us will suddenly no longer qualify according to them.’’ Although many people with AS were used to not receiving formal services (as one participant explained, ‘‘many regard [AS] as mild’’), others voiced concerns that even if services were available, combining AS and AD into a single diagnosis would lead to generalized
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services. Participants believed that ‘‘services need to be targeted to the particular needs.’’
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Advocacy: ‘‘I Think This Is Better Solved by Advocacy’’ Due to participants’ fear of losing identity and services, methods of advocacy were proposed: ‘‘We search for help from professionals but most of them don’t know what they are talking about. We—the very people who are supposedly so deficient in living—must be the ones to wake them up.’’ Participants wanted to express their opinions about changes in the DSM–5. One person stated, ‘‘We should clarify exactly which characteristics of AS are disabling in NTWorld. Issues where we do need support to function as contributing members of society.’’ A female with AS from New Zealand proposed individual advocacy: ‘‘It’s all about being your own best advocate.’’ Others discussed larger scale advocacy: ‘‘they need input from autistics with appropriate qualifications but discussion and review are essential.’’ People with AS and AD discussed which profession to approach: ‘‘I think the outreach to change the definitions in the DSM shouldn’t be left to just us, or the PhDs,’’ instead ‘‘the teachers in the schools who will be working with these kids.’’ However, due to the nature of an AS or AD diagnosis, advocacy could pose an arduous task for some: ‘‘I have Asperger’s and I couldn’t imagine trying to make a public statement in defense of keeping Asperger’s Syndrome over some slight technicality.’’ Participants shared advocacy ideas including using Internet and support groups as outlets for advocacy. A 59-year-old woman with AS suggested, ‘‘We all could sprinkle threads in all the forums we participate in to keep this idea alive and get people thinking.’’ Another woman with AS suggested, ‘‘Wrongplanet should sponsor some kind of protest about this. Anyone know how to get in touch with whoever maintains the site? I tried email, but never got a response. Maybe a message to his YouTube account. Also, we should email=write to APA.’’
Solidarity: ‘‘How Do We Coalesce to a ‘Voice’ Loud Enough to Be Heard?’’ Working together was a common thread in the forum. Many mentioned that, regardless of diagnostic changes that might occur, they must ‘‘band together for political purposes.’’ A 21-year-old woman with AS expressed, it is ‘‘going to be up to us, along with those who support us whole heartedly, to get the services needed by all members of the autistic community.’’ Although most agreed that solidarity was the way to go, some were hesitant of the success of solidarity and advocacy efforts. One person expressed. ‘‘Getting aspies to move as a group is like herding cats!!!! But divided we fall.’’ Others expressed fear that advocacy might lead to ‘‘less support and acceptance.’’
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Limitations There are methodological limitations when analyzing discussion forum data. Although people with autism-related diagnoses find the Internet a useful vehicle to voice their feelings, some limitations included the use of Internet forums for data collection. The investigators were not able to verify the accuracy of the participants’ self-reporting diagnostic characteristics. Demographic information was limited due to the participants’ choice to self-identify. The results of this study are dependent on the authenticity and truthfulness of each respondent. Due to Internet access limitations, the investigators were unable to probe the individuals for additional information. Discussion posts used in the study were derived from a limited sample size of 76 participants, although the discussion forum had more than 70,000 users. Participants with AS or AD commenting on the discussion board might have a more compelling, emotional, and self-interest temperament compared with the general population regarding changes to the DSM–5. Also, there were no participants who identified themselves as being diagnosed with PDD–NOS. Consequently, this study might not represent people with PDD– NOS who might be affected by the DSM–5. In addition, Internet discussion posts occurred prior to the approved DSM–5 ASD criteria.
DISCUSSION People with AS and AD were aware of the changes being made to the DSM– 5. Many were concerned about the implications of these changes with regard to a shift in identity and a reduction in services. Some speculate the cure movement is behind the changes, because those on the ‘‘higher functioning’’ end of the spectrum might not retain a diagnosis. Advocacy and solidarity were discussed as ways to voice an opinion about the changes; however, the divide within the AS and AD community is great. Identity was a main topic. Many participants made the assumption that AS and AD would be subsumed by ASD. By removing AS and AD and instating ASD, the DSM–5 workgroup has intended to use a ‘‘spectrum’’ rather than separate diagnoses. There might still be an observable distinction between high- and low-functioning autism, but everyone will have the diagnosis of autism. Our participants did not seem to make this distinction, but either way there was substantial outrage by some that they would now be labeled as ‘‘autistic’’ instead of having Asperger’s. Similar to Vivanti et al.’s (2013) research, it was revealed that those with Asperger’s differentiated themselves from those with autism—people who clearly needed help, according to the Asperger’s community. ‘‘Aspie culture’’ has grown over the past 20 years. Organizations run by and for those with AS and AD have fought for years for acceptance. Bumiller (2008) considered how autism cannot be readily characterized as disabling;
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therefore, those who are diagnosed with it should not be limited by society. Many participants discussed the idea that their brains are simply ‘‘wired differently’’ and that society should help them as they help others with more visible disabilities. By taking away the term Asperger’s, the workgroup has eliminated (in the eyes of participants in this study) an entire culture—a culture separate from those with low-functioning autism. Some participants with AD were disgusted by how those with high-functioning AS or AD did not want to be a part of the same community as them. There was much discussion of how the term autistic elicits negative responses from society, such as a belief that a person with AD is severely mentally impaired. Many with AS in this study rejected using this term, preferring Asperger’s because it did not immediately equate with mental illness, and once explained was not perceived negatively. However, this leaves those with low-functioning autism out in the cold. They are part of the community but not valued within it. Similar to Bagatell’s (2010) research, those who opposed the cure movement far outweighed those in favor of it. A cure—although some who are lower functioning might desire it—was generally thrown to the wayside. In fact, some participants believed the changes to the DSM–5 were maliciously designed by the cure movement to ‘‘cure’’ people who might not retain a diagnosis with the stricter guidelines. Most participants of this discussion forum preferred to embrace their diagnosis, and asked that society and ‘‘experts’’ do the same. This study contributed a unique discussion of people with AS’s ability to mimic social behaviors. Their description of these skills represented that mimicking was a coping mechanism to adjust to society’s expectations of participants. However, some who described their ability reported that they would probably not meet criteria for the ASD diagnosis. Participants clarified that they did not believe that they were ‘‘cured,’’ though. Thus, people with autistic traits might still need support even if they can mimic social behaviors. However, this suggests that diagnosticians must be careful to assess symptoms of autism that might be beyond visible behaviors. According to the participants, advocacy and solidarity are ways to create change in society, in politics, and in the DSM, but one person pointed out that trying to organize people with AS and AD is extremely difficult. On top of that, the social anxiety that manifests in people with these diagnoses would make public speaking a challenge. With these challenges in mind, participants decided that utilizing the Internet was the best option in advocating for change. However, some believed the ‘‘PhDs’’ and the ‘‘experts’’ needed direct input from those with AS and AD. Throughout the discussion forum, distinction between those ‘‘PhDs’’ and those with AS or AD was constant. Like in Bagatell’s (2010) interviews, it was also found on the discussion forums that people with AS and AD felt that professionals claimed to be advocates, but that they did not listen.
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Many people with AS and AD talked of the trials and tribulations they went through to obtain a correct diagnosis. With the new changes, they fear it will be even more difficult. It is important to this group of people that their input be used by professionals in defining and characterizing this new diagnosis of ASD. Based on how the new diagnosis was initially written, some were concerned they would see a reduction in services. Although having support available was a priority for this community, concerns related to identity trumped those related to services. However, many feared that they would lose their diagnoses entirely, and therefore lose all their services or receive more generalized services. There were some though, who were hopeful that the new diagnosis might make professionals realize that it does not matter if a person is AS or AD, or is ‘‘high’’ or ‘‘low’’ functioning—everyone should be entitled to services.
CONCLUSION People with AS and AD understand their limitations. They know they have a hard time understanding social context. They know some of them cannot speak in public. They know some of their behaviors are seen as strange to the ‘‘neurotypical’’—but that does not mean that their opinion should be disregarded and their concerns should be overlooked. When providing services for people with ASD and previous diagnoses of AS and AD, the concerns of the affected community should be noted. AS and AD are much more than a diagnosis. They are—to some—their identity and their culture. As with many of the diagnoses in the DSM, AS and AD are not something solely cured by medicine or something that lessens in severity with time. Some have chosen to embrace their diagnosis as a way of being, rather than as an illness to be cured. To this group of people, simply taking away the name ‘‘Asperger’s’’ is unthinkable, even if they do retain a diagnosis under ASD. Because the professionals are the ones who have changed the definition, they are the ones who (in the eyes of the client) hold the keys to services, and as they have supposedly been advocating on behalf of the AS and AD community, it is no wonder people with AS and AD are concerned. It appears to people with AS and AD that, as the professionals are trying to make the diagnosis clearer for diagnosticians to use, by taking out the names of diagnoses and making the qualifications more specific, the ‘‘experts’’ are actually working against the very people they are trying to help.
REFERENCES American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author.
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Journal of Social Work in Disability & Rehabilitation Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/wswd20
Concerns About Identity and Services Among People with Autism and Asperger's Regarding DSM–5 Changes a
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Jessica L. H. Spillers , Leonard M. Sensui & Kristen F. Linton
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Myron B. Thompson School of Social Work , University of Hawaii at Manoa , Honolulu , Hawaii , USA b
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School of Social Work , University of Nevada, Las Vegas , Las Vegas , Nevada , USA Accepted author version posted online: 09 May 2014.Published online: 08 Aug 2014.
To cite this article: Jessica L. H. Spillers , Leonard M. Sensui & Kristen F. Linton (2014) Concerns About Identity and Services Among People with Autism and Asperger's Regarding DSM–5 Changes, Journal of Social Work in Disability & Rehabilitation, 13:3, 247-260, DOI: 10.1080/1536710X.2014.912186 To link to this article: http://dx.doi.org/10.1080/1536710X.2014.912186
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Journal of Social Work in Disability & Rehabilitation, 13:247–260, 2014 Copyright # Taylor & Francis Group, LLC ISSN: 1536-710X print=1536-7118 online DOI: 10.1080/1536710X.2014.912186
Concerns About Identity and Services Among People with Autism and Asperger’s Regarding DSM–5 Changes
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JESSICA L. H. SPILLERS and LEONARD M. SENSUI Myron B. Thompson School of Social Work, University of Hawaii at Manoa, Honolulu, Hawaii, USA
KRISTEN F. LINTON School of Social Work, University of Nevada, Las Vegas, Las Vegas, Nevada, USA
The Diagnostic and Statistical Manual of Mental Disorders (5th ed. [DSM–5]; American Psychiatric Association, 2012) now includes a new autism spectrum diagnosis (ASD) with previous separate diagnoses of autism removed. This study explores the concerns of people with Asperger’s syndrome (AS) and autistic disorder (AD). Discussion forum data of people with AS and AD (N ¼ 76) were analyzed using phenomenological, inductive-content analysis to gather qualitative data about the concerns of people with AS and AD regarding the changes in the DSM–5. People with AS and AD were concerned about identity, community, the cure movement, and services. They also discussed using advocacy and solidarity to address their concerns. KEYWORDS advocacy, Asperger’s, autism, autism spectrum disorders, DSM–5, identity, services, solidarity
The Diagnostic and Statistical Manual of Mental Disorders (5th ed. [DSM–5]; American Psychiatric Association, 2012) includes a new autism spectrum diagnosis (ASD) with previous separate autism-related diagnoses removed (e.g., Asperger’s syndrome [AS], childhood disintegrative disorder, autistic disorder [AD], or pervasive developmental disorder–not otherwise specified Address correspondence to Kristen F. Linton, Assistant Professor, School of Social Work, University of Nevada, Las Vegas, 4505 S. Maryland Pkwy, Box 455032, Las Vegas, NV 891545032, USA. E-mail: [email protected] 247
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[PDD–NOS]; American Psychiatric Association, 2000, 2012). Current literature about the DSM–5’s change to ASD has focused on validity, specificity, and reliability (Frazier et al., 2012; Mayes, Black, & Tierney, 2013). Relatively little research has been conducted regarding the concerns of those who will be most affected—people with previous diagnoses of AS, AD, and PDD–NOS. The AS and AD community has been seen as a chronically mentally ill population and not fit to provide input into the definitions of AS and AD because of their ‘‘disease’’ (Bagatell, 2010; Bumiller, 2008; Shelly, 2004). Within the past 20 years, however, through self-advocacy and solidarity, this group of people has come together to say that they would rather embrace and shape their own identity versus allowing society to do it for them (Bagatell, 2010; Bumiller, 2008; Harmon, 2004; Shelly, 2004). This study used Internet discussion boards for and by those with AS and AD to gather qualitative data about the reactions of people with AS and AD regarding the changes in the DSM–5.
DSM–5 CHANGES Rather than looking at the field of pervasive developmental disorders as a set of separate diagnoses, each with their own unique traits, diagnosticians are now charged with looking at a spectrum of symptoms and the severity of those symptoms to diagnose a person with ASD. The new diagnostic criteria have been reduced from three (social=communication deficits, fixed behaviors, and repetitive reward-seeking behaviors) to two domains (American Psychiatric Association, 2012). All social and communication deficits and fixed behaviors domain criteria need to be met to be diagnosed. There will also be the requirement to meet two of four criteria under the repetitive reward-seeking behaviors domain (American Psychiatric Association, 2012). Many have felt the change was necessary to increase specificity (true positives)—especially because there has been some confusion about the overlap of criteria between AS and AD (Sharma, Woolfson, & Hunter, 2011; Skuse, 2012). Research has found that specificity was high for people with previous diagnoses of AD, whereas those with AS and PDD–NOS are less likely to receive diagnoses of ASD (Frazier et al., 2012; Mayes et al., 2013).
THE ‘‘NEURODIVERSITY’’ MOVEMENT People with AS or AD validate their opinions about their diagnoses through the lens of neurodiversity (Bagatell, 2010; Bumiller, 2008; Jaarsma & Welin, 2012; Kapp, Gillepsie-Lynch, Sherman, & Hutman, 2013; Ortega, 2009). It should be noted that many people with AS or AD prefer to be called an ‘‘autistic person,’’ rather than a ‘‘person with autism’’ (Bagatell, 2010; Bumiller, 2008; Kapp et al., 2013; Ortega, 2009; Shelly, 2004). There remains dispute (Corrigan, 2007; Jaarsma & Welin, 2012; Ortega, 2009), however, and
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so for the purposes of this article, person-first language (e.g., people with AS or AD) will be used. Neurodiversity is a term and movement credited to Judy Singer—an activist and woman with Asperger’s (Ortega, 2009). Neurodiversity seeks to take the stigma out of AS and AD and replace it with the acceptance of differences. Embracing characteristics of what some professionals might call an ‘‘illness’’ allows those with AS and AD to battle stereotypes of either being severely mentally impaired or savant-like, loner geniuses (Ortega, 2009). Many organizations created by and for those with AS and AD have been founded in the past 20 years—including the Autistic Self-Advocacy Network (ASAN) and Autism Network International (ANI). Central to these organizations’ focus is the reimaging of AS and AD. Rather than seeing it as a disease to be cured, they see it as an alternate way of thinking—something that cannot be removed from the person (Bagatell, 2010; Bumiller, 2008; Kapp et al., 2013). Many who support the neurodiversity movement claim a cure is unnecessary, because AS and AD are simply different ‘‘ways of being’’ that should be accepted in society (Bagatell, 2010; Bumiller, 2008; Ortega, 2009; Shelly, 2004). However, there are those with severe AS and AD who support the cure movement, because the struggles of daily living are too difficult (Bagatell, 2010; Kapp et al., 2013). According to the neurodiversity movement, society should be inclusive, accept people with their differences, and provide help in the sense that those who are wheelchair bound have ramps provided for them in the community. This is representative of the social model of disability, which focuses on structural barriers that limits full inclusion of people with disabilities into society (Ballan, 2008). Central to the identity of people with AS and AD is their diagnosis.
IDENTITY AND STIGMA By developing ASD, stigma attached to each previous diagnosis could potentially be eliminated. Everyone would be in the same category. Although the change would appear to support the neurodiversity movement by eliminating the stigma related to a particular mental health diagnosis (Corrigan, 2007), there are those who worry about the repercussions of changing from AS and AD to ASD. Those who have identified with being an ‘‘Aspie’’ (AS) or being an ‘‘autistic’’ (AD) might go through an identity crisis—especially if their diagnosis is changed or taken away (Vivanti et al., 2013). For instance, some people with AS are concerned they will be seen as less intelligent if their diagnosis is changed from AS to ASD—the word autism being the trigger for concern (Jaarsma & Welin, 2012). A majority of those with Asperger’s and high-functioning autism (a phrase used by some clinicians and the autistic community to describe people with autism who have above-average skills in deficit areas, but a phrase not used in the previous version of the DSM)
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have long seen themselves as intellectually above those with more severe autism (Jaarsma & Welin, 2012; Vivanti et al., 2013).
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THIS STUDY In this article, we explore the concerns of those most affected by changes to ASD in the DSM–5—people with AS and AD. Through qualitative Internet-based research, we have gathered discussion board material, coded it, and analyzed those themes. Themes of identity, community, cure movement, services, advocacy, and solidarity are discussed. The new definition of ASD in the DSM–5 walks a fine line. It could help streamline research, but could also break a group of people from their culture. The neurodiversity movement aims to be accepted into society by using a social model of disability (Ballan, 2008). However, identity and stigma within the AS and AD community might pull this movement backward. The new diagnosis of ASD could separate some from this community, but could be easier for diagnosticians to use. By gathering input from those whose voice might not readily or easily be heard (people with AS and AD), our research is adding to the literature in a unique way. We have gathered pure, unaltered feedback without the presence of a facilitator in a focus group—which could be an overwhelming situation for a person with severe AD (Benford & Standen, 2009). Much literature takes the stance of looking at outside variables and asking about past experiences, but our research looks on the inside and to the future.
DISCUSSION FORUMS AND ASD Discussion forum analyses have been used in previous research. Singer (1999) called for people with AS and AD to use the Internet to voice their opinions—to see it as a ‘‘prosthetic social device.’’ Since then, research has demonstrated that people with AS and AD actively use the Internet (Benford & Standen, 2009; Goodwin, 2008; Singer, 1999). Benford and Standen (2009) found that people with AS and AD prefer asynchronous forms of communication. Discussion forums are a type of asynchronous communication, because people choose when to participate. In addition, research has also found that using the Internet for communication can be liberating among people with autism (Benford & Standen, 2009; Finkenauer, Pollmann, Begeer, & Kerkhof, 2012). Research on people with AS and AD has recently begun to use discussion forums (Jordan & Caldwell-Harris, 2012). Discussion forum data can provide access to larger, generalizable samples, decrease anxiety among people with autism, and reveal the voices of people with AS or AD who might not otherwise share their opinions in a face-to-face interaction
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(Benford & Standen, 2009; Burke, Kraut, & Williams, 2010; Finkenauer et al., 2012; Jordan & Caldwell-Harris, 2012). Challenges to analyzing discussion forum data are limited demographic data and an inability to verify diagnoses of participants (Jordan & Caldwell-Harris, 2012). However, Back et al. (2010) found that a majority of Internet users accurately identify themselves. Another benefit of using discussion forums is a lack of formal facilitation. Developing credibility as a facilitator of a focus group is challenging (Linhorst, 2004). This study demonstrated that participants might not share their feelings with a formal facilitator who is considered a professional. Participants referred to researchers as ‘‘those PhDs’’ and ‘‘experts’’ differentiating themselves from professionals throughout the discussion forum analyzed in this study. The discomfort could have been exacerbated by the general social anxiety experienced during face-to-face interactions among people with AS and AD (Benford & Standen, 2009; Burke et al., 2010; Finkenauer et al., 2012; Jordan & Caldwell-Harris, 2012).
METHODS Data Collection Discussion forum posts on WrongPlanet.net, a popular forum used by people with AS and AD, were analyzed for this study. Created in 2004, The WrongPlanet.net site has more than 70,000 users and 5,138,836 entries. These data determine that it is an active Internet discussion forum (Plank, 2013). A Google search using descriptors matching ‘‘DSM–5(V) discussion board=forum’’ and ‘‘autism’’ or ‘‘Asperger’s’’ or ‘‘ASD’’ were used to find potential discussion forums for analysis. WrongPlanet.net was selected because it was the first and largest discussion forum listed each time different Google search terms were entered. In addition, the site was accessible to the general public, no passwords were required to enter the site, and it included two discussion boards related to the topic of DSM–5. The Institutional Review Board at the University of Hawaii at Manoa qualified this study with an exempt status. The criteria for analysis targeted the discussion posts regarding the proposed AS, AD, and PDD–NOS changes in the DSM–5. Two WrongPlanet.net discussion boards were analyzed, labeled ‘‘Report of the DSM–V Neurodevelopmental Disorders Work Group’’ and ‘‘No More Aspergers in the DSM–V.’’ The first board’s discussion posts covered a period from April 18, 2009, to May 26, 2012, and the second board contained posts from September 21, 2010, to September 25, 2010. One-hundred and ninety-three posts were analyzed within both boards and participants entered between 1 and 14 posts (M ¼ 2.17, SD ¼ 2.41).
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Sample Characteristics The study sample consisted of people with diagnoses of AD (n ¼ 12) and AS (n ¼ 64). Those who identified themselves as family members, or those whose diagnoses were unknown, were not included in the study sample (n ¼ 10), as the focus of this study is the experiences of people with AS and AD. There were more males (n ¼ 42; 55.3%) than females (n ¼ 34; 44.7%) in the sample, which is representative of the autism population (Fombonne, 2005). Forty participants provided additional demographic information. Their ages ranged from 17 to 61 (M ¼ 31.95, SD ¼ 12.56) and the study’s sample included members from the United States (n ¼ 13), Canada (n ¼ 7), the United Kingdom (n ¼ 6), South Africa (n ¼ 2), China (n ¼ 1), New Zealand (n ¼ 1), and Spain (n ¼ 1).
Analysis Quotations copied from WrongPlanet.net were used verbatim within this study. Phenomenological analysis was conducted with a goal of explaining the concerns of people with AS and AD over changes in the DSM–5. No a priori hypotheses were used for analysis (Creswell, Hanson, Clark-Plano, & Morales, 2007; Padgett, 2008). Although phenomenological research often is conducted using individual interviews or focus groups, this study analyzed discussion forum data because it provided a more comfortable outlet for participants to express their concerns (Goodwin, 2008; Singer, 1999). Inductive content analysis was conducted. Consistent with phenomenological inquiry, investigators used bracketing and triangulation to enhance the rigor and trustworthiness of the study. Investigators discussed potential biases based on their personal and professional experiences prior to determining a code or theme. In addition, investigators in this study represent multiple expertise including disability, autism, and criminal justice representing triangulation of investigators. The confirmability of the study was strengthened with the use of investigators with multiple perspectives making theme agreement among multiple coders particularly credible (Padgett, 2008). The third author read through the discussion forum transcript several times to identify initial codes. These codes were raised to recurrent and prominent themes across the discussion (Ryan & Bernard, 2003). Codes were given weight with frequency, emotion, extensiveness, use of stories, and examples. An example of frequency in this study was that many participants discussed the ‘‘cure movement.’’ Emotion, which is usually observed in voice inflection and facial expressions, was often expressed in discussion forums using exclamation marks or all capitalized letters, such as ‘‘This is the gift of autism=asperger!!’’ or ‘‘ASPERGERS.’’ Discussions of concerns and resolutions over the changes to DSM–5 were themes that emerged from the data. Other themes that emerged included discussion of reliability, validity, and
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issues with the DSM in general; these themes were analyzed separately (Linton, 2014; Linton, Krcek, Sensui, & Spillers, 2013). The third author developed an initial set of codes of the full discussion board data. Each section of text could have received multiple codes. Subcodes were combined within common themes or larger categories. The authors revised the codebook several times until agreement was reached. The first and second authors coded all text pertaining to concerns and resolutions regarding changes in the DSM–5. The kappa, a widely used statistic used for agreement analysis, was used to measure agreement among coders’ analysis (Viera & Garrett, 2005). Good agreement among raters was reached with a kappa of .79 between the two raters of 193 statements (Orwin, 1994).
RESULTS People diagnosed with AS and AD voiced concerns and possible resolutions associated with the DSM–5 ASD diagnosis. Fifty participants’ responses are included in this analysis. The other participants did not discuss concerns regarding identity and services. The participants’ concerns were presented with a collective acknowledgment that the general public, policymakers, and medical professionals did not understand the issues of individuals diagnosed with AS or AD. Analyses of the discussion forum posts revealed that participants were concerned about identity, services, and how they might maintain their identity and services regardless of changes in DSM–5. Twenty-five participants discussed identity and nine participants discussed services. Participants expressed both negative and neutral feelings about identity. Ten of the participants who expressed negative feelings about identity related to changes in DSM–5 were also concerned that the ‘‘cure movement’’ was behind the changes. To resolve issues of identity and possible reduction in services, 16 participants discussed possible advocacy and solidarity efforts.
Identity: ‘‘I Think the Main Issue for Us Is How We Personally Identify’’ NEGATIVE ‘‘I don’t think it’s always helpful to be stuck with a label.’’ People with AD and AS voiced concern about the DSM–5 ASD diagnoses and the stigma associated with the new criteria. People with AS were disappointed to lose the label of Asperger’s: ‘‘Aspies will be treated a bit like their stupid.’’ A person with AS further illustrated, ‘‘I don’t want to necessarily be called ‘autistic,’ because I don’t want to be treated like I have full-on autism, you know?’’ Some individuals felt uncomfortable with the ASD diagnoses, ‘‘even if it is in point of fact true.’’
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NEUTRAL ‘‘But on the other hand, they’re all just labels and nothing else.’’ Some participants were impartial: ‘‘Am I proud to be Autistic? I don’t really care.’’ A female with AS from China stated, ‘‘Doesn’t really bother me. . . . Call it Too-Much-WoW syndrome for all I care.’’
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Cure Movement: ‘‘Asking the Question of Whether It Is Possible to Be Cured’’ Participants who feared that the cure movement led the DSM–5 changes dominated the conversation. This theme was often double coded with concerns over identity. Those with AS and AD who felt that way believed that the new ASD diagnosis had stricter diagnostic criteria; therefore, those who do not meet the ASD criteria will be perceived as ‘‘cured.’’ A small number of participants discussed the hopeful possibility of curing AD symptoms. A 20-year-old man with AS expressed that outgrowing autism is ‘‘a very valid point.’’ However, most participants expressed the improbability of a cure as ‘‘ridiculous’’ and ‘‘you don’t really ever ‘Grow out’ of being Autistic.’’ An individual added: ‘‘It’s a style of neurological processing that couldn’t possibly go away, although social skills might improve.’’ Many participants illustrated their ability to mimic social behavior to cope and function in society, which they expressed could be misinterpreted as being cured. For example, ‘‘As a child, I felt shame about having no friends. So, I made up names of friends and stories about what I would do with the friends sometimes. I masked very well.’’ Participants also expressed that they were able to ‘‘control’’ and ‘‘replicate any behavior,’’ which could be interpreted as ‘‘outgrowing’’ autism.
Services: ‘‘Won’t Be Tailored to Individual Needs’’ Some individuals voiced optimism about changes in the DSM–5 and services: ‘‘People will be much better served by merging the diagnosis into one category. Less focus on categorization, more focus on assisting the people seeking help.’’ A female with AS from Canada stated, ‘‘I really hope that encompassing it all into one dx. will help people understand that no matter how high or low functioning, services should still be provided.’’ However, more participants expressed fear that the DSM–5 ASD would reduce current services. A male with AS from the United States explained, ‘‘If they make the diagnostic changes they’re proposing, a whole bunch of us will suddenly no longer qualify according to them.’’ Although many people with AS were used to not receiving formal services (as one participant explained, ‘‘many regard [AS] as mild’’), others voiced concerns that even if services were available, combining AS and AD into a single diagnosis would lead to generalized
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services. Participants believed that ‘‘services need to be targeted to the particular needs.’’
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Advocacy: ‘‘I Think This Is Better Solved by Advocacy’’ Due to participants’ fear of losing identity and services, methods of advocacy were proposed: ‘‘We search for help from professionals but most of them don’t know what they are talking about. We—the very people who are supposedly so deficient in living—must be the ones to wake them up.’’ Participants wanted to express their opinions about changes in the DSM–5. One person stated, ‘‘We should clarify exactly which characteristics of AS are disabling in NTWorld. Issues where we do need support to function as contributing members of society.’’ A female with AS from New Zealand proposed individual advocacy: ‘‘It’s all about being your own best advocate.’’ Others discussed larger scale advocacy: ‘‘they need input from autistics with appropriate qualifications but discussion and review are essential.’’ People with AS and AD discussed which profession to approach: ‘‘I think the outreach to change the definitions in the DSM shouldn’t be left to just us, or the PhDs,’’ instead ‘‘the teachers in the schools who will be working with these kids.’’ However, due to the nature of an AS or AD diagnosis, advocacy could pose an arduous task for some: ‘‘I have Asperger’s and I couldn’t imagine trying to make a public statement in defense of keeping Asperger’s Syndrome over some slight technicality.’’ Participants shared advocacy ideas including using Internet and support groups as outlets for advocacy. A 59-year-old woman with AS suggested, ‘‘We all could sprinkle threads in all the forums we participate in to keep this idea alive and get people thinking.’’ Another woman with AS suggested, ‘‘Wrongplanet should sponsor some kind of protest about this. Anyone know how to get in touch with whoever maintains the site? I tried email, but never got a response. Maybe a message to his YouTube account. Also, we should email=write to APA.’’
Solidarity: ‘‘How Do We Coalesce to a ‘Voice’ Loud Enough to Be Heard?’’ Working together was a common thread in the forum. Many mentioned that, regardless of diagnostic changes that might occur, they must ‘‘band together for political purposes.’’ A 21-year-old woman with AS expressed, it is ‘‘going to be up to us, along with those who support us whole heartedly, to get the services needed by all members of the autistic community.’’ Although most agreed that solidarity was the way to go, some were hesitant of the success of solidarity and advocacy efforts. One person expressed. ‘‘Getting aspies to move as a group is like herding cats!!!! But divided we fall.’’ Others expressed fear that advocacy might lead to ‘‘less support and acceptance.’’
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Limitations There are methodological limitations when analyzing discussion forum data. Although people with autism-related diagnoses find the Internet a useful vehicle to voice their feelings, some limitations included the use of Internet forums for data collection. The investigators were not able to verify the accuracy of the participants’ self-reporting diagnostic characteristics. Demographic information was limited due to the participants’ choice to self-identify. The results of this study are dependent on the authenticity and truthfulness of each respondent. Due to Internet access limitations, the investigators were unable to probe the individuals for additional information. Discussion posts used in the study were derived from a limited sample size of 76 participants, although the discussion forum had more than 70,000 users. Participants with AS or AD commenting on the discussion board might have a more compelling, emotional, and self-interest temperament compared with the general population regarding changes to the DSM–5. Also, there were no participants who identified themselves as being diagnosed with PDD–NOS. Consequently, this study might not represent people with PDD– NOS who might be affected by the DSM–5. In addition, Internet discussion posts occurred prior to the approved DSM–5 ASD criteria.
DISCUSSION People with AS and AD were aware of the changes being made to the DSM– 5. Many were concerned about the implications of these changes with regard to a shift in identity and a reduction in services. Some speculate the cure movement is behind the changes, because those on the ‘‘higher functioning’’ end of the spectrum might not retain a diagnosis. Advocacy and solidarity were discussed as ways to voice an opinion about the changes; however, the divide within the AS and AD community is great. Identity was a main topic. Many participants made the assumption that AS and AD would be subsumed by ASD. By removing AS and AD and instating ASD, the DSM–5 workgroup has intended to use a ‘‘spectrum’’ rather than separate diagnoses. There might still be an observable distinction between high- and low-functioning autism, but everyone will have the diagnosis of autism. Our participants did not seem to make this distinction, but either way there was substantial outrage by some that they would now be labeled as ‘‘autistic’’ instead of having Asperger’s. Similar to Vivanti et al.’s (2013) research, it was revealed that those with Asperger’s differentiated themselves from those with autism—people who clearly needed help, according to the Asperger’s community. ‘‘Aspie culture’’ has grown over the past 20 years. Organizations run by and for those with AS and AD have fought for years for acceptance. Bumiller (2008) considered how autism cannot be readily characterized as disabling;
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therefore, those who are diagnosed with it should not be limited by society. Many participants discussed the idea that their brains are simply ‘‘wired differently’’ and that society should help them as they help others with more visible disabilities. By taking away the term Asperger’s, the workgroup has eliminated (in the eyes of participants in this study) an entire culture—a culture separate from those with low-functioning autism. Some participants with AD were disgusted by how those with high-functioning AS or AD did not want to be a part of the same community as them. There was much discussion of how the term autistic elicits negative responses from society, such as a belief that a person with AD is severely mentally impaired. Many with AS in this study rejected using this term, preferring Asperger’s because it did not immediately equate with mental illness, and once explained was not perceived negatively. However, this leaves those with low-functioning autism out in the cold. They are part of the community but not valued within it. Similar to Bagatell’s (2010) research, those who opposed the cure movement far outweighed those in favor of it. A cure—although some who are lower functioning might desire it—was generally thrown to the wayside. In fact, some participants believed the changes to the DSM–5 were maliciously designed by the cure movement to ‘‘cure’’ people who might not retain a diagnosis with the stricter guidelines. Most participants of this discussion forum preferred to embrace their diagnosis, and asked that society and ‘‘experts’’ do the same. This study contributed a unique discussion of people with AS’s ability to mimic social behaviors. Their description of these skills represented that mimicking was a coping mechanism to adjust to society’s expectations of participants. However, some who described their ability reported that they would probably not meet criteria for the ASD diagnosis. Participants clarified that they did not believe that they were ‘‘cured,’’ though. Thus, people with autistic traits might still need support even if they can mimic social behaviors. However, this suggests that diagnosticians must be careful to assess symptoms of autism that might be beyond visible behaviors. According to the participants, advocacy and solidarity are ways to create change in society, in politics, and in the DSM, but one person pointed out that trying to organize people with AS and AD is extremely difficult. On top of that, the social anxiety that manifests in people with these diagnoses would make public speaking a challenge. With these challenges in mind, participants decided that utilizing the Internet was the best option in advocating for change. However, some believed the ‘‘PhDs’’ and the ‘‘experts’’ needed direct input from those with AS and AD. Throughout the discussion forum, distinction between those ‘‘PhDs’’ and those with AS or AD was constant. Like in Bagatell’s (2010) interviews, it was also found on the discussion forums that people with AS and AD felt that professionals claimed to be advocates, but that they did not listen.
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Many people with AS and AD talked of the trials and tribulations they went through to obtain a correct diagnosis. With the new changes, they fear it will be even more difficult. It is important to this group of people that their input be used by professionals in defining and characterizing this new diagnosis of ASD. Based on how the new diagnosis was initially written, some were concerned they would see a reduction in services. Although having support available was a priority for this community, concerns related to identity trumped those related to services. However, many feared that they would lose their diagnoses entirely, and therefore lose all their services or receive more generalized services. There were some though, who were hopeful that the new diagnosis might make professionals realize that it does not matter if a person is AS or AD, or is ‘‘high’’ or ‘‘low’’ functioning—everyone should be entitled to services.
CONCLUSION People with AS and AD understand their limitations. They know they have a hard time understanding social context. They know some of them cannot speak in public. They know some of their behaviors are seen as strange to the ‘‘neurotypical’’—but that does not mean that their opinion should be disregarded and their concerns should be overlooked. When providing services for people with ASD and previous diagnoses of AS and AD, the concerns of the affected community should be noted. AS and AD are much more than a diagnosis. They are—to some—their identity and their culture. As with many of the diagnoses in the DSM, AS and AD are not something solely cured by medicine or something that lessens in severity with time. Some have chosen to embrace their diagnosis as a way of being, rather than as an illness to be cured. To this group of people, simply taking away the name ‘‘Asperger’s’’ is unthinkable, even if they do retain a diagnosis under ASD. Because the professionals are the ones who have changed the definition, they are the ones who (in the eyes of the client) hold the keys to services, and as they have supposedly been advocating on behalf of the AS and AD community, it is no wonder people with AS and AD are concerned. It appears to people with AS and AD that, as the professionals are trying to make the diagnosis clearer for diagnosticians to use, by taking out the names of diagnoses and making the qualifications more specific, the ‘‘experts’’ are actually working against the very people they are trying to help.
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