Opinions of People Who Self-Identify With Autism and Asperger’s on DSM-5 Criteria

Abstract

Purpose:

Method:

Phenomenological analysis of discussion forum dialogue among participants (N = 76) with AD and AS was conducted.

Results:

Discussions demonstrated agreement that the PDD-NOS diagnosis should be removed from the DSM-5. People with AD and AS were concerned about the inclusion of medical or neurobiological research, functioning, reciprocity, and gender bias in the ASD diagnosis.

Discussion:

Social workers should acknowledge the feelings of people with AD and AS when they use the DSM-5.

Keywords

autism spectrum disorders Aspergers gender validity

Autistic disorder (AD), Asperger’s syndrome (AS), and pervasive developmental disorder–not otherwise specified (PDD-NOS) have been removed from the Diagnostic and Statistical Manual of Mental Disorders–Fifth Edition (DSM-5; Swedo et al., 2012). The DSM-5 includes a new autism spectrum disorder (ASD) diagnosis. Field trials and other research have assessed the validity, sensitivity, and specificity of the DSM-5 ASD diagnosis. A majority of research makes the assumption that AD, AS, and PDD-NOS are intended to be subsumed under ASD in the DSM-5. The aim of the DSM-5 Neurodevelopmental Disorders Workgroup was to make changes to the DSM-IV–Text Revision (TR) and to capture all individuals with ASD with the diagnostic criteria in DSM-5 (Swedo et al., 2012). The workgroup did not state that they intended to collapse AD, AS, and PDD-NOS into ASD. In fact, Frances and Widiger (2012) reported that autism is an overdiagnosed epidemic and cautioned the DSM-5 workgroup from creating new epidemics. While the autism community has expressed concern over Frances’ perspective that autism is overdiagnosed, they also expressed appreciation of his recognition that the DSM development process is secretive and lacks independent reviews (Autism & Oughtisms, 2012). Client voice was encouraged in the development of DSM-5. The public provided feedback on proposed versions of the DSM-5 on the website (American Psychiatric Association, 2012).

Due to concern over continued receipt of diagnoses and corresponding services among clients, it is important to assess whether people with autism-related diagnoses from the DSM-IV-TR are experiencing symptoms of ASD and will meet criteria for ASD in DSM-5. Research has found that some people with AD, AS, and PDD-NOS are at risk of not fitting criteria for the ASD diagnosis (Gibbs, Aldridge, Chandler, Witzlsperger, & Smith, 2012). Research has also found that the DSM-5 increases specificity, but decreases sensitivity (Frazier et al., 2012; Matson, Belba, Horovitz, Kozlowski, & Bamburg, 2012; Mayes, Black, & Tierney, 2013; McPartland, Reichow, & Volkmar, 2012). Due to new research and limitations, it is unknown whether neurological research supports or challenges the collapse of AD and AS into one diagnosis (Pina-Camacho et al., 2012; Via, Radua, Cardoner, Happe, & Mataix-Cols, 2011; Yu, Cheung, Chua, & McAlonan, 2011). The changes and research findings have caused much controversy; yet, no studies have demonstrated feelings of people with current autism-related diagnoses regarding their assessment of the DSM-5 ASD criteria. This study analyzed dialogue among participants who self-identified with AD and AS on Internet discussion forums that disclosed how people who self-identified with AD and AS critiqued the DSM-5 ASD diagnostic criteria.

DSM-IV-TR and DSM-5 Changes

The DSM-IV-TR placed autism-related diagnoses under the category of PDD. There were three autism-related disorders included in PDD: AD, AS, and PDD-NOS. The changes in the DSM-5 replace the PDD category with an ASD diagnosis thereby omitting AD, AS, and PDD-NOS (American Psychiatric Association, 2000, 2012).

While some refer to the DSM-5 as a dimensional model, others believe the DSM-5 utilizes a fusion of categorical and dimensional models (Frazier et al., 2012; Tanguay, 2011). The categorical perspective posits that there are observable differences between people with and without ASD. The dimensional perspective posits that differences between people with and without ASD is a matter of degree, thus no distinct ASD category exists (Frazier et al., 2012). This is represented in the DSM-5, since the ASD diagnoses will include a level of service need implying a matter of degree (American Psychiatric Association, 2012). Frazier and colleagues (2012) expressed that both perspectives are reflected in the DSM-5, because it presents a category of ASD and two symptom dimensions.

Not only does the DSM-5 change the taxonomic structure of the autism-related diagnoses, but it also creates new criteria for a diagnosis of autism (Table 1). The following juxtaposition of the DSM-IV-TR autism-related and the DSM-5 ASD diagnoses illustrates vast differences in the definition of autism. It does not appear that AD, AS, and PDD-NOS are easily collapsed into ASD. There are three domains of experience that encapsulate AD in the DSM-IV-TR: social, communication, and atypical behaviors. The DSM-5 ASD diagnosis includes two domains: social–communication and restricted/repetitive behaviours (RRB). The social and communication behaviors are combined into one domain in the DSM-5. The RRB domain added sensory abnormalities, which are not included in the DSM-IV-TR. In the DSM-5, clients must meet all the three requirements in the social–communication domain, whereas the DSM-IV-TR’s AD required only two from social domain and one from communication domain. AS required two of the four criteria to be met for social domain, no requirement for communication domain, and an on-time acquisition of language. The DSM-5 ASD diagnosis requires two of the four RRB to be met, while DSM-IV-TR diagnoses for AD and AS required one RRB. No RRB was required for PDD-NOS in the DSM-IV-TR. The DSM-5 ASD diagnosis also requires that symptoms were present in early childhood. An onset criterion was only included for AD in the DSM-IV-TR (American Psychiatric Association, 2000, 2012).

Table 1.

Diagnostic Criteria in DSM-IV-TR and DSM-5 (American Psychiatric Association, 2000, 2012 ).

	DSM-5	DSM-IV-TR
	ASD	AD	AS
A	Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all three of the following: 1. Deficits in social–emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction 2. Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated—verbal and nonverbal communication, through abnormalities in eye contact and body language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures 3. Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people	Six or more items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3): 1. Qualitative impairment in social interaction, as manifested by at least two of the following: (a) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction, (b) failure to develop peer relationships appropriate to developmental level, (c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest), (d) lack of social or emotional reciprocity 2. Qualitative impairments in communication as manifested by at least one of the following: (a) delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime), (b) in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others, (c) stereotyped and repetitive use of language or idiosyncratic language, (d) lack of varied, spontaneous make-believe play, or social imitative play appropriate to developmental level 3. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following: (a) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus, (b) apparently inflexible adherence to specific, nonfunctional routines, or rituals, (c) stereotyped and repetitive motor manners (e.g., hand or finger flapping or twisting, or complex whole-body movements), (d) persistent preoccupation with parts of objects	Qualitative impairment in social interaction, as manifested by at least two of the following: 1. Marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction 2. Failure to develop peer relationships appropriate to developmental level 3. A lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people) 4. Lack of social or emotional reciprocity
B	Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following: 1. Stereotyped or repetitive speech, motor movements, or use of objects (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases) 2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change (such as motoric rituals, insistence on same route or food, repetitive questioning, or extreme distress at small changes) 3. Highly restricted, fixated interests that are abnormal in intensity or focus (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests) 4. Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of environment (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects)	Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play	Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following: 1. Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity of focus 2. Apparently inflexible adherence to specific, nonfunctional routines, or rituals 3. Stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements) 4. Persistent preoccupation with parts of objects
C	Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)	The disturbance is not better accounted for by Rett’s disorder or childhood disintegrative disorder	The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning
D	Symptoms together limit and impair everyday functioning		There is no clinically significant general delay in language (e.g., single words used by age 2, communicative phrases used by age 3)
E			There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood
F			Criteria are not met for another specific pervasive developmental disorder or schizophrenia

Note. AD = Autistic disorder; AS = Asperger’s syndrome; ASD = autism spectrum disorder; DSM-IV-TR = Diagnostic and Statistical Manual of Mental Disorders–Fourth Edition–Text Revision; DSM-5 = Diagnostic and Statistical Manual of Mental Disorders–Fifth Edition.

Reliability

A major reason for changes to autism-related diagnoses in DSM-5 is reliability. Among a sample of 64 children, DSM-5 field trials demonstrated reasonable test–retest reliability of the ASD diagnosis (κ = 0.69, confidence interval = [0.58, 0.79]; Regier et al., 2013). However, the field trials did not include children under age 6, which is when children typically receive initial diagnoses. In addition, the two sites used for the field trials were academic rather than community settings, where most diagnoses occur (Lai, Lombardo, Chakrabarti, & Baron-Cohen, 2013). While a primary concern over the DSM-5 changes to autistic-related diagnoses are regarding people with AD, AS, and PDD-NOS receiving the ASD diagnoses, the field trials demonstrated that children who did not receive a diagnosis of ASD received a social communication disorder diagnosis, which includes criteria for difficulties in social and communication, but does not require difficulties in repetitive behaviors (Regier et al., 2013).

Validity

Discussions of validity regarding the DSM-5 ASD diagnosis revolve around the consolidation of AD, AS, and PDD-NOS into ASD. Research has assessed diagnostic outcomes for samples of children and adolescents according to the DSM-IV-TR and the DSM-5. Among a sample of children aged 2–16 with diagnoses of AD (n = 59), AS (n = 18), and PDD-NOS (n = 34) with DSM-IV-TR receiving diagnoses at a community autism assessment site, 26 did not meet the criteria for diagnosis of ASD in the DSM-5 (Gibbs et al., 2012). Among the 26 children who did not obtain a diagnosis of ASD were children with AD (10.2%), AS (16.6%), and PDD-NOS (50%). This demonstrates that people with autism-related diagnoses from the DSM-IV-TR may not fit criteria for the ASD diagnosis, and people with PDD-NOS may be the least likely to fit criteria. Clinicians’ notes indicated that reasons for failure to meet criteria for ASD were insufficient evidence of impairment in RRB (n = 14), displaying intact use of nonverbal behaviors (n = 8), and not meeting criteria for deficits in social emotional reciprocity or developing and maintaining relationships (n = 4; Gibbs et al., 2012). Other research of children and adolescents also found statistically significant differences between the DSM-IV-TR and DSM-5 groups in the social–communication domain (Turygin, Matson, Beighly, & Adams, 2013; Worley & Matson, 2012).

While the previously presented research has described how many people with AD, AS, and PDD-NOS meet criteria for ASD, other research focused on specificity and sensitivity. This research makes the assumption that a true positive (specificity) is when a person with AD, AS, or PDD-NOS received a diagnosis of ASD, and a true negative (sensitivity) is when a person who has AD, AS, or PDD-NOS did not receive a diagnosis of ASD. Four studies assessing specificity and sensitivity among children found that specificity generally increased with the DSM-5, but this was at the expense of sensitivity (Frazier et al., 2012; Matson et al., 2012; Mayes et al., 2013; McPartland et al., 2012). Sensitivity of the DSM-5 could reduce false positives by more than 4 times the estimated DSM-IV-TR rate (DSM-5 = 3% vs. DSM-IV-TR = 14%; Frazier et al., 2012). While specificity was high for people with diagnoses of AD using DSM-5 (100%), only 27% of children with PDD-NOS received a diagnosis of ASD in one study (Mayes et al., 2013). Research found that reducing one less symptom requirement from either social–communication or RRB domains improved the balance of specificity to sensitivity with specificity remaining high and capturing between 11% and 16% more people with AD, AS, and PDD-NOS under the ASD diagnosis (Frazier et al., 2012; Mayes et al., 2013).

In an effort to assess the validity of the DSM-5 ASD diagnosis, neurological research has been conducted to assess if brain imaging supports the dyadic domains (social/communication and RRB) reported as aspects of people with autism-related diagnoses. Minimal neurological research comparing people with AD and AS has been conducted; therefore, the novice research referenced here reports limitations in generalizability and techniques used for analysis (Pina-Camacho et al., 2012; Via et al., 2011; Yu et al., 2011). Studies compared people with current diagnoses of AD and AS to understand if people with AD and AS were having experiences as expressed in DSM-5 domains. A systematic review of 208 studies comprised of functional magnetic resonance imaging and diffusion tensor imaging data conducted by Pina-Camacho and colleagues (2012) found that studies consistently reported abnormal function and structure in areas of the brain that impacted social and pragmatic language deficits, syntactic–semantic language deficits, and repetitive and restrictive behaviors in patients with AD, AS, and PDD-NOS. This research indicated that people with autism-related diagnoses from the DSM-IV-TR shared similarities that were reflected in the DSM-5 ASD diagnosis. In addition, two meta-analyses assessed gray matter volume abnormalities, which are associated with learning to function socially by observing and IQ scores. People with diagnoses of AD and AS had increased regional gray matter volumes compared to control groups and did not statistically significantly differ from each other (Via et al., 2011; Yu et al., 2011). These studies imply similarities among people with diagnoses of AD and AS. However, Yu, Cheung, Chua, and McAlonan (2011) also found that people with AS experienced clusters of lower gray matter volume in the right hemisphere, while people with AD experienced more bilateral excess of gray matter suggesting slight differences between gray matter of people with AD and AS. Due to limitations of neurological research, it is unknown whether this research supports or challenges the collapse of AD and AS into one diagnosis.

Current Study

The likelihood that people with AD, AS, and PDD-NOS will fit the criteria for ASD could impact their receipt of diagnosis and services related to the diagnosis. Research indicated that some people with current diagnoses of AD, AS, and PDD-NOS may not fit criteria for ASD, and the DSM-5 increases specificity, but decreases sensitivity according to research (Frazier et al., 2012; Gibbs et al., 2012; Matson et al., 2012; Mayes et al., 2013; McPartland et al., 2012). Because the changes in the DSM-5 could impact people with AD and AS diagnoses, this phenomenological study aimed to describe how people with self-identified diagnoses of AD and AS critiqued the proposed criteria for the DSM-5 ASD diagnosis. Data were from discussion forums on WrongPlanet.net where people with self-identified diagnoses of AD and AS created and participated in two discussion boards related to the changes in the ASD diagnosis in the DSM-5. Participants’ assessment of proposed criteria in the DSM-5 provides information about whether or not the DSM-5 reflects the feelings and experiences of people with AD and AS. Inductive content analysis was used to analyze the data.

Discussion Forums and ASD

People with AD and AS are active participants on the Internet (Benford & Standen, 2009; Burke, Kraut, & Williams, 2010; Finkenauer, Pollmann, Begeer, & Kerkhof, 2012). They have been called to use the Internet as a platform to express their feelings, and Internet forums have also been promoted as resources for research (Goodwin, 2008). Singer (1999) advocated that people with AD and AS diagnoses use the Internet as a “prosthetic social device” (p. 62) to voice their feelings about their diagnoses and other issues. A survey of 138 people with AD and AS diagnoses indicated high levels of Internet use (Benford & Standen, 2009). In addition, the survey found that participants preferred asynchronous over synchronous forms of communication (Benford & Standen, 2009). Discussion forums are asynchronous, because participants can choose if and when they would like to participate. Qualitative interviews of people with AD found that there is a liberating effect of communication via the Internet (Benford & Standen, 2009). This liberation can provide an outlet for people with autism-related diagnoses to communicate (Benford & Standen, 2009; Finkenauer et al., 2012).

Analysis of discussion board data among people with AD and AS diagnoses is common (Caldwell-Harris, Murphy, Velazquez, & McNamara, 2011; Jordan & Caldwell-Harris, 2012). Positive aspects of utilizing discussion forum data include the following: they provide access to larger, generalizable samples compared to use of focus groups, decrease anxiety among people with autistic traits caused by face-to-face interactions, and can give voice to people with autism-related diagnoses who may not otherwise speak their opinions in face-to-face forms of communication (Benford & Standen, 2009; Burke et al., 2010; Finkenauer et al., 2012; Jordan & Caldwell-Harris, 2012). Limitations may include limited data on demographics or inability to verify diagnoses (Jordan & Caldwell-Harris, 2012). However, Back et al. (2010) found that most users accurately identify themselves online. In addition, self-report of diagnoses on the Internet appears to be accurately reported based on previous research. Jordan and Caldwell-Harris (2012) found that people who self-reported that they were autistic significantly differed in their discussions from those who reported that they were neurotypical on Internet forums indicating that people who reported they were autistic were actually autistic.

While focus groups are the previously most common methodology used to assess community viewpoints on a topic, discussion forum data can be used in place of focus groups (Linhorst, 2004). A challenge to focus groups is developing credibility as the facilitator of a group (Linhorst, 2004). The data in this study demonstrated that participants shared information among each other that they may not have shared with the presence of a researcher or professional facilitator. Throughout the discussion forum data analyzed in this study, people with AD and AS diagnoses referred to researchers as those PhDs and experts differentiating themselves from professionals. For example, a participant reported, “That’s why I say that ‘experts’ frequently don’t get autism at all. They truly need our input. However, I also realize that they do not generally consider us a reliable source.” This statement also justifies the need for this analysis to give voice to people with autism-related diagnoses. Participants may not have been comfortable expressing this opinion with researchers or facilitators of a focus group. The discomfort may have been compounded by general anxiety in face-to-face interactions among people with self-reported AD and AS diagnoses in the sample (Benford & Standen, 2009; Burke et al., 2010; Finkenauer et al., 2012; Jordan & Caldwell-Harris, 2012).

Method

Data Collection

Critiques of the proposed criteria for ASD in the DSM-5 by people with self-reported AD and AS diagnoses were collected from posts on WrongPlanet.net, a popular online discussion forum used by people with AD and AS diagnoses. WrongPlanet was created in 2004 (Plank, 2013). Since then it has had over 70,000 participants who collectively posted over 5,138,836 entries, which indicate an active discussion board (Plank, 2013). The ASD discussion forum was chosen based on Google search terms DSM-5(V) discussion board/forum and autism or Asperger’s or ASD. The WrongPlanet site was selected, because it was the first and largest discussion board listed on the Google search results. In addition, it included two forums relating to the topic of the DSM-5. The discussion boards used in this sample were public and did not require a password or personal account to be viewed. The University of Hawaii at Manoa institutional review board determined that this study was exempt, because the authors used public data.

Collection criteria required that participants’ posts discussed the proposed changes to the DSM-5 on the topic of AD, AS, and/or PDD-NOS. Two discussion forums from WrongPlanet.net titled “Report of the DSM-V Neurodevelopmental Disorders Work Group” and “No More Aspergers in the DSM-V” were chosen for this analysis. The “Report of the DSM-V Neurodevelopmental Disorders Work Group” forum included posts from April 18, 2009, to May 26, 2012, and the “No More Aspergers in the DSM-V” forum included posts from September 21, 2010, to September 25, 2010. Since the ASD diagnosis was approved by the American Psychiatric Association (2012) in December, the forum data analyzed for this study represents participants’ opinions of proposed criteria for the DSM-5 ASD diagnosis. The discussions by participants related directly to the approved diagnostic criteria for ASD in DSM-5.

Sample Characteristics

Only participants who expressed, that is, self-reported, that they had diagnoses of AD or AS were included in the study sample (N = 76). The sample consisted of people who self-identified as having diagnoses of AD (n = 12) or AS (n = 64). Others who self-identified as family members or who did not know if they had AD or AS also participated in the discussion forum, but they were not included in this analysis (n = 10). These participants were not included in the analysis to yield a focus on the perspectives of people with AD and AS. There were more males (n = 42; 55.3%) than females (n = 34; 44.7%) in the study sample, which is representative of demographics of people with autism-related diagnoses (Fombonne, 2005). A total of 193 posts were analyzed for this study. Each participant posted between 1 and 14 posts each in the two boards analyzed in this study (M = 2.17; SD = 2.41). Forty participants included their age and/or location in their postings. Among those, participants’ ages ranged from 17 to 61 (M = 31.95; SD = 12.56); participants were from the United States (n = 13), Canada (n = 7), United Kingdom (n = 6), South Africa (n = 2), and one from each of the following countries: China, New Zealand, and Spain.

Analysis

Discussion board text was copied from the WrongPlanet site and pasted verbatim into a Microsoft Word document. Due to the exploratory nature of this study, no a priori hypotheses were used. A phenomenological analysis was conducted; thus, the goal of analysis was to describe the point of view of people with diagnoses of AD and AS on the criteria of the proposed ASD diagnosis (Creswell, Hanson, Clark-Plano, & Morales, 2007; Padgett, 2008). While phenomenological data collection typically includes individual interviews or focus groups, this study used discussion board data, because it is an outlet that people with AD and AS diagnoses have been called to use to express their feelings, and investigators have been encouraged to use it as a resource for research (Goodwin, 2008; Singer, 1999). Inductive content analysis was used. The data were read through several times by the first author with aims of identifying initial codes. The initial codes were raised to recurrent and prominent themes across the data (Ryan & Bernard, 2003). Weight was given to frequency of discussion, emotion expressed in discussion, extensiveness of discussion, use of stories, and personal examples. The first and second authors worked together to create an initial set of codes of the full discussion board data (QSR, 2008). All text were analyzed for meeting criteria of the new DSM-5 ASD diagnosis. Every section of text could be double coded or assigned multiple codes. Multiple codes were subsumed by larger categories, or themes, identified as “tree nodes.” Authors revised the codebook several times until agreement was reached and broad themes were apparent. The third and fourth authors coded all text pertaining to meeting criteria for the new DSM-5 ASD diagnosis using the codebook. A κ of .79 was reached suggesting good agreement among raters (Orwin, 1994). κ is a measure widely used for agreement (Orme & Gillespie, 1986; Viera & Garrett, 2005). The κ value in this study refers to agreement between the two raters on 193 statements. This use of the κ is similar to other previous phenomenological research (Adams & Williams, 2011; Katz & Hershkowitz, 2013).

Results

People with AD and AS diagnoses provided rich dialogue regarding critiquing the criteria for the ASD diagnosis proposed and approved for the DSM-5. Results are described using verbatim quotes provided by participants copied directly from their posts. It should be noted that some participants made the assumptions that people with AD and AS diagnoses would receive the ASD diagnosis, while others did not. The two most prominent themes were reliability and validity. Discussions demonstrated unanimous agreement that the PDD-NOS diagnosis should be removed to improve reliability of the ASD diagnosis. Several subthemes were subsumed under discussions of validity including medical classification, high functioning, reciprocity, and gender. In general, people with self-identified AD and AS diagnoses agreed that the ASD diagnosis in the DSM-5 should reflect medical or neurobiological research. Many participants had concerns about people who had AS meeting the criteria for ASD in the DSM-5, because they were higher functioning, while others did not agree that people with AS actually were higher functioning than people with AD, on average. People with self-identified AD and AS diagnoses expressed concern over the change in the requirement of reciprocity in ASD in the DSM-V. This subtheme was often double coded with discussions of gender bias based on the change in the reciprocity requirement.

Reliability: “We Will All Just Be ASD All the Time”

People with self-identified AD and AS diagnoses recognized the need for improvement in reliability of diagnoses and frequently reported receipt of multiple diagnoses with the DSM-IV-TR. A man illustrated this:

Technically speaking, I should be labeled HFA [high-functioning autism] (I was first diagnosed with autistic disorder) but I got the label of AS because it was convenient and perceived as more appropriate (remember that HFA is not really a diagnostic category).

Some participants even felt that there were diagnosticians who did not want to provide a diagnosis of AD and AS at all. One reason noted was a lack of knowledge: “Last year, I brought up AS to my therapist and she told me I was schizotypal, which doesn’t fit at all. I had to go see an AS specialist on my own to get any sensible explanations.”

Some participants believed that the ASD diagnosis in the DSM-5 would improve the reliability of diagnoses with adequate training of diagnosticians. Participants expressed that the new ASD diagnosis is simpler; thus, it should be easier for the diagnosticians to understand: “simplifying things WILL make it easier for many doctors WELL-VERSED in what AS really is, to apply the DX.” In addition, people with ASD will experience more stability in their diagnosis: “People won’t feel like they fit one diagnosis at one time and another one later. We will all just be ASD all the time.”

PDD-NOS. “Seems Like a Kind of Receptacle”

Participants consistently agreed that PDD-NOS should be removed in the DSM-5. Several participants expressed concern that the PDD-NOS diagnosis was not specific enough; therefore, diagnoses were not reliable. For example,

PDD-NOS is, as defined by the psych who diagnosed me, a combination. There are symptoms of both Classic and Aspergers but not enough in either one to put in one or the other exclusively.

People called the diagnosis a junk category, such a mess, and a receptacle. A man described that PDD-NOS is provided when the diagnostician did not know what diagnosis to give: “… they can’t figure out what to call it so they call it that.”

Validity: “You Don’t Have Autism Because You Are Odd”

Some participants expressed that they knew what validity meant by referencing the DSM-5 workgroup and advocating for the diagnosis to be “valid and accurate.” Others used the term valid for other purposes, such as “it is not valid to have a diagnosis that caters to prejudice.” However, many participants discussed the validity—that the ASD criteria measures what it is intended to measure, ASD. Consensus among people with self-identified AD and AS diagnoses was not reached in discussions on validity. Some people felt that the new diagnosis is “too simplistic,” while others felt that it “narrows the spectrum.” A man described the potential consequences of the simplistic nature of the diagnosis:

I think they are proceeding in the wrong direction, simplifying things instead of becoming more detailed. AS is not simple. It is very, very complicated and even somewhat ambiguous at least in appearance. There are things about it that are extremely difficult to understand, and creating an apparently simpler means of dxing does nothing but make the doctors jobs easier. It does nothing for expanding the understanding of the condition.

Those who felt that the diagnosis was narrowed described specific aspects of their experience of AD or AS that do not appear in the DSM-5 ASD diagnosis: “executive function issues, sensory issues, and a variety of other issues that Aspies [AS] got through.”

While some people who self-identified with AS were concerned, others were confident about meeting the criteria for ASD in the DSM-5. Some people with AS felt as though they would not fit the criteria for the diagnosis, because it did not accurately reflect their symptoms, such as opaque sensory or communication issues. A woman who self-identified with AS explained:

My social difficulties are my most significant symptom and have caused me terrible problems, but I don’t think they are very accurately described when one simply says “deficits in nonverbal and verbal communication.” That makes it sound like you have to be obviously strange or inappropriate in how you communicate socially, rather than just being lost at understanding the social dance and being left out of being able to participate in it. I think my social deficits are better explained by the current more nuanced definition of AS.

In addition, another person explained that “Aspies typically do have language delays, the delays just show up well after the age of 3 years,” thus indicating that they may not easily fit into the ASD diagnosis.

Participants sometimes disagreed whether or not AS should be or is a part of ASD. If AS is a part of ASD, then some participants felt that they should easily be able to fit criteria for the DSM-5 ASD diagnosis:

I don’t understand how anyone diagnosed as autistic couldn’t fit the new criteria. It’s extremely basic. You don’t have autism because you are odd, you have autism because you’re impaired in social communication and have restricted behaviour and interests starting in childhood. And that’s basically what it calls for.

Neurobiological Research: “Whether or Not Asperger’s Is a Form of Autism”

People with self-identified AD and AS diagnoses were familiar with neurobiological research on AD and AS and wanted research to be reflected in the DSM-5 ASD diagnosis. Participants were knowledgeable of the limitations of neurological research: “Neuroscience is still a very new field, and there is a lot we don’t know.” Another woman who self-reported that she has AS and was a neuroscientist also said:

The fact that HFA [high-functioning AD] individuals have a speech delay and Aspies don’t says that there is something different about HFA brains than Aspie brains. Maybe the difference is small, but we need to find out for neuroscience’s sake. And if the label of Asperger’s gets trashed, these differences may never be found.

A few men expressed their concerns that the research was not reflected in the new diagnosis. One of them felt as though there was research indicating that AS should have a separate diagnosis with subcategories:

There is quite enough research done on Asperger to separate it into different subcategories. The ability to give details in the description is what makes diagnosis valid and accurate. In order to provide a better understanding, rather than simple categorization, about Asperger, DSM V has to provide different possible symptoms, and how certain mixtures of symptoms can describe a certain type of Aspie [AS].

Others felt that there was research, but not enough research to make any changes to the diagnosis at this time: “we do NOT know for sure whether or not Asperger’s is a form of autism.”

High Functioning: “I Don’t Want to Be Treated Like I Have Full-On Autism … ”

Discussions of the level of functioning of people with AD and AS caused emotional debates. Some people believed that AD and AS diagnoses were associated with different functioning levels: “AS individuals are far higher functioning within society than a low functioning autistic ever could be.” Other people expressed concerns about this issue, but discussed it as a stereotype, rather than a fact. For example:

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? I think my biggest fears are that Aspies will be treated a bit like their stupid. Not saying that the fully autistic are, just saying that that is how the general NT’s [neurotypicals] see them/us.

People with self-identified AD diagnoses appeared offended by those who expressed that they were lower functioning. A man with AD said, “I’m upset that some of you would not want to be ‘lumped in’ or ‘categorized’ with me when we have so much in common. There are truly more similarities than there are differences.” Some people felt comfortable with AD and AS receiving the ASD diagnosis in the DSM-5. A person expressed that the AD diagnosis already combines people with various functioning levels: “I feel most people lump autistics in the same group, lumping HFAs [high functioning Autism] with those who aren’t even verbal.”

Reciprocity: “I Could Fake Brief Conversations”

Discussion of the social reciprocity criteria in the DSM-5 ASD diagnosis reached consensus. People with AD and AS generally had concerns about the ability for the diagnostician to detect deeper experiences of inadequacies in social reciprocity rather than what can be observed visually. Many participants shared their ability to fake social reciprocity as they matured: “I could fake brief conversations with peers pretty well, although not making them friends.” Because people with self-identified diagnoses of AD and AS reported that they can develop behaviors that “mimic” their typical peers, it is especially important for diagnosticians to conduct an assessment that takes this into account. A woman described an experience of a diagnosis conducted without taking this into account:

When I was first assessed, a dr called my roommate and said, “Does she have reciprocal conversations?” She said yes and so I was told because of that I “couldn’t be autistic.” At that time it wasn’t a main, necessary criterion as it will be from 2012 on, unless we stop it.

Gender “Criteria is Less Sensitive to Female-Specific Behaviors”

Throughout the discussions of reciprocity, participants expressed apprehension over the impact that the reciprocity criteria would have on gender bias of the ASD diagnosis. A person with AS explained, “Most aspies have this [reciprocity] to some degree, many females more than males. Females are already being underdiagnosed and I feel this will make diagnosis harder.” Thus, because girls and women are more likely to experience reciprocity, they may be less likely to receive an ASD diagnosis. A female participant expressed, “the new criteria is less sensitive to female-specific behaviors.” The discussion of mimicking social behaviors was often double coded with discussions of gender bias indicating that females may be more likely to mimic social reciprocity.

Discussion and Applications to Social Work

Phenomenological analysis of discussion forum data on Wrongplanet.net disclosed that people with AD and AS were concerned about the reliability and validity of the DSM-5 ASD diagnosis. Those who discussed PDD-NOS unanimously agreed with its removal from the DSM-5. Participants who discussed reciprocity expressed concern that the proposed wording of “lack of reciprocity” in ASD criteria was too strict. The DSM-5 Neurodevelopmental Disorders Workgroup was amenable to these concerns. PDD-NOS is included in the DSM-5 and approved reciprocity criteria are worded as “deficits in social-emotional reciprocity” in ASD (American Psychiatric Association, 2012). This suggests that the DSM-5 is in agreement with some concerns of people who self-identify with AD and AS. Participants were also concerned about the validity of the ASD diagnosis relating to medical classification, high functioning, and gender issues. While people with AD and AS disagreed on how much medical or neurobiological research on autism was available, they agreed that the ASD diagnosis should reflect the research that is available. While it should be noted that discussions were composed with minimal arguments among participants even when faced with disagreement, the most controversial topic of discussion was about whether people with AS could meet criteria for ASD, because they were considered higher functioning than people with AD. Not all participants believed that people with AS were higher functioning than people with AD. Some people with AD expressed hurt feelings over the discussion topic. In addition, many participants expressed concern over potential gender bias resulting from DSM-5 ASD criteria.

The limitations to this study include the use of Internet forums for data collection, participants’ self-identification of demographic and diagnostic characteristics, discussion data occurred prior to when the accepted DSM-5 ASD criteria was announced, and no participants identified as having PDD-NOS. While people with autism-related diagnoses are called to use the Internet to voice their feelings, there are methodological limitations to analyzing discussion board data. The use of only one website chosen from the study limits the generalizability of the study findings. The study findings represent only the opinions of people who access the particular website used for this study. The investigators were unable to provide participants with direct questions or probes. In addition, participants of the discussion board on DSM-5 may have had stronger feelings about changes to the DSM-5 than the general population. The investigators used self-report data of participants’ demographic and diagnostic characteristics. In addition, the discussions analyzed occurred prior to the announcement of accepted DSM-5 ASD criteria thus some discussions related to proposed rather than accepted criteria. The data are relevant to analysis of DSM-5, because all of the themes that emerged in the data related to criteria in ASD or aspects of DSM-IV-TR that were not included in DSM-5, such as PDD-NOS. The findings in this study provide data demonstrating whether or not people with AD or AS support the changes in the DSM-5 and potential repercussions of DSM-5. For example, participants expressed that the ASD criteria may exacerbate gender bias. This information has implications for practice with DSM-5 and future versions of the DSM. Finally, this study does not represent feelings of people with PDD-NOS who will be affected by changes in DSM-5.

People with AD and AS expressed desire for medical or neurobiological research to be reflected in the DSM-5 ASD diagnosis. As demonstrated on neurobiological research and recognized by participants, there are many limitations to research (Pina-Camacho et al., 2012; Via et al., 2011; Yu et al., 2011). It is important that social workers discuss the strengths and limitations of neurobiological research with their clients to improve their understanding of why some research might not be reflected in the DSM-5 ASD diagnosis.

The most controversial discussion topic on higher functioning was discussed as a concern over validity of the DSM-5 ASD diagnosis, yet can also be perceived as an identity issue among people with AS. The ASD diagnosis is not based on IQ, and functioning can vary based on service need; therefore, people with ASD will experience various different functioning abilities (American Psychiatric Association, 2012). As expressed in research, some people with AD diagnoses identify as experiencing “Higher-Functioning Autism” even though it is not a DSM-IV-TR diagnosis (Benford & Standen, 2009). Social workers can support people with AD and AS through the transition of DSM-IV-TR to DSM-5 by being sensitive to identity issues of those affected by the changes. Participants discussed the fluidity of receiving diagnoses. For example, participants shared their experiences of receiving many different diagnoses throughout their lifetime. While some people might relate and proudly identify with AS or AD, clients should know that, even though their diagnosis may change over time, they are still the same person regardless of their diagnosis. Social workers should remember and remind clients that a diagnosis does not define a person holistically. Social workers may want to reiterate to clients and the community that the ASD diagnosis does not define abilities or disabilities of people who receive the diagnosis and that intelligence is not a part of the ASD diagnosis.

Participants’ concern of gender bias in DSM-5 diagnoses is warranted. Females were 4 times less likely than males to receive diagnoses of autism-related diagnosis with the DSM-IV-TR (Fombonne, 2005). While the majority of gender bias discussion by people with AD and AS was associated with the strict criteria for reciprocity, other comments were vague, such as “the new criteria is less sensitive to female-specific behaviors.” More research is needed that explores female-specific behaviors that impact odds of diagnosis of ASD. Nascent feminist disability scholars have begun to discuss differences in the experiences of females with autism-related diagnosis (Bumiller, 2008; Jack, 2012; Shelly, 2004). Jack (2012) found that girls with AD felt genderless and experienced differences compared to typical peers and males with AD relationships. As suggested by participants of this study, social workers should conduct careful, in-depth assessments of females for ASD, especially pertaining to the social reciprocity requirement, to eliminate any gender bias that may be occurring in diagnoses of females. Social workers should be careful not to assume that females have social reciprocity even if it appears that they do since females in this study discussed the ability to mimic social behaviors.

While some concerns of people with AD and AS have been addressed in the approved DSM-5 ASD criteria, others have not. As indicated by discussions of high functioning, people with AD and AS may experience identity issues, as they receive or do not receive an ASD diagnosis with DSM-5. Receipt of diagnosis is also associated with support services; thus, research should explore the impact of DSM-5 on identity and service availability for people who do not receive an ASD diagnosis, yet had previous diagnoses of AD, AS, or PDD-NOS. This should be addressed in social work services and future research. In addition, potential gender bias in the DSM-5 ASD diagnosis should be explored in practice and research.

Footnotes

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

References

Adams

H. L.

Williams

L. R.

(2011). Advice from teens to teens about dating: Implications for health relationships. Children and Youth Services Review, 33, 254–264.

American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., Text rev.). Washington, DC: Author.

American Psychiatric Association. (2012). DSM-5 Development. Retrieved from www.dsm5.org

Autism & Oughtisms. (2012). Allen Frances on the problem of with the primacy of diagnosis and the DSM-5. Received from http://autismandoughtisms.wordpress.com/2012/06/12/allen-frances-on-the-problem-with-the-primacy-of-diagnosis-and-the-dsm-5/

Back

M. D.

Stopfer

J. M.

Vazire

Gaddis

Schmukle

S. C.

Egloff

Gosling

S. D.

(2010). Facebook profiles reflect actual personality, not self-idealization. Psychological Science, 21, 372–374.

Benford

Standen

(2009). The internet: A comfortable communication medium for people with Asperger’s syndrome (AS) and high functioning autism (HFA). Journal of Assistive Technologies, 3, 44–53.

Bumiller

(2008). Quirky citizens: Autism, gender, and reimagining disability. Signs, 33, 967–991.

Burke

Kraut

R.E.

Williams

(2010). Social Use of Computer-Mediated Communication by Adults on the Autism Spectrum. CSCW’2010: Proceedings of the international conference on computer-supported cooperative work (pp. 425–434). New York, NY: ACM Press.

Caldwell-Harris

Murphy

C. F.

Velazquez

McNamara

. (2011). Religious Belief Systems of Persons with High Functioning Autism. Presented at the Annual Meeting of the Cognitive Science Society, Boston, MA.

10.

Creswell

J. W.

Hanson

W. E.

Clark-Plano

V. L.

Morales

(2007). Qualitative research designs: Selection and implementation. The Counseling Psychologist, 35, 236–264.

11.

Finkenauer

Pollmann

M. M. H.

Begeer

Kerkhof

(2012). Brief report: Examining the link between autistic traits and compulsive internet use in a non-clinical sample. Journal of Autism and Developmental Disorders, 42, 2252–2256.

12.

Fombonne

(2005). Epidemiology of autistic disorder and other pervasive developmental disorders. Journal of Clinical Psychiatry, 66, 3–8.

13.

Frances

A. J.

Widiger

(2012). Psychiatric diagnosis: lessons from the DSM-IV past and cautions for the DSM-5 future. Annual Review of Clinical Psychology, 8, 109–130. doi 10.1146/annurev-clinpsy-032511-143102.

14.

Frazier

T. W.

Youngstrom

E. A.

Speer

Embacher

Law

Constantino

… Eng

(2012). Validation of proposed DSM-5 criteria for autism spectrum disorder. Journal of the American Academy of Child & Adolescent Psychiatry, 51, 28–40.

15.

Gibbs

Aldridge

Chandler

Witzlsperger

Smith

(2012). Brief report: An exploratory study comparing diagnostic outcomes for autism spectrum disorders under DSM-IV-TR with the proposed DSM-V revision. Journal of Autism and Developmental Disabilities, 42, 1750–1756.

16.

Goodwin

(2008). Enhancing and accelerating the pace of autism research and treatment. Focus on Autism and Other Developmental Disabilities, 23, 125–128.

17.

Jack

(2012). Gender Copia: Feminist rhetorical perspectives on an autistic concept of sex/gender. Women’s Studies in Communication, 35, 1–17.

18.

Jordan

C. J.

Caldwell-Harris

C. L.

(2012). Understanding differences in neurotypical and autism spectrum special interests through internet forums. Journal of Intellectual and Developmental Disabilities, 50, 391–402.

19.

Katz

Hershkowitz

(2013). Repeated interviews with children who are alleged victims of sexual abuse. Research on Social Work Practice, 23, 210–218.

20.

Lai

M. C.

Lombardo

M. V.

Chakrabarti

Baron-Cohen

(2013). Subgrouping the autism “spectrum”. PLoS Biology, 11, e1001544.

21.

Linhorst

D. M.

(2004). A review of the use and potential of focus groups in social work research. Qualitative Social Work, 1, 208–228.

22.

Matson

J. L.

Belba

B. C.

Horovitz

Kozlowski

A. M.

Bamburg

J. W.

(2012). Comparing symptoms of autism spectrum disorders in developmental disabled adult population using the current DSM-IV-TR diagnostic criteria and the proposed DSM-5 diagnostic criteria. Journal of Developmental and Physical Disabilities, 24, 403–414.

23.

Mayes

S. D.

Black

Tierney

C. D.

(2013). DSM-5 under-identifies PDDNOS: Diagnostic agreement between the DSM-5, DSM-IV, and checklist for autism spectrum disorder. Research in Autism Spectrum Disorders, 7, 298–306.

24.

McPartland

J. C.

Reichow

Volkmar

F. R.

(2012). Sensitivity and specificity of proposed DSM-5 diagnostic criteria for autism spectrum disorder. Journal of the American Academy of Child & Adolescent Psychiatry, 51, 368–383.

25.

Orme

J. G.

Gillepsie

D. F.

(1986). Reliability and bias in categorizing individual client problems. Social Service Review, 60, 161–174.

26.

Orwin

R. G.

(1994). Evaluating coding decisions. In Cooper

Hedges

L. V.

(Eds.), The handbook of research synthesis (pp. 139–162). New York, NY: Russell Sage Foundation.

27.

Padgett

D. K.

(2008). Qualitative methods in social work research. Thousand Oaks, CA: Sage.

28.

Pina-Camacho

Villero

Fraguas

Boada

Janssen

Navas-Sanchez

F. J.

… Parellada

. (2012). Autism spectrum disorder: Does neuroimaging support the DSM-5 proposal for a symptom dyad? A systematic review of functional magnetic resonance imaging and diffusion tensor imaging studies. Journal of Autism and Developmental Disorders, 42, 1326–1341.

29.

Plank

(2013). WrongPlanet.net: The online resource and community for autism and Asperger’s. Received from http://www.wrongplanet.net/forums.html

30.

QSR International Pty Ltd. (2008). NVivo qualitative data analysis software (Version 8). Victoria, Australia: Author.

31.

Regier

D. A.

Narrow

W. E.

Clarke

D. E.

Kraemer

H. C.

Kuramoto

S. J.

Kuhl

E. A.

Kupfer

D. J.

(2013). DSM-5 field trials in the United States and Canada, part II: Test-retest reliability of selected categorical diagnoses. American Journal of Psychiatry, 170, 59–70.

32.

Ryan

G. W.

Bernard

H. R.

(2003). Techniques to identify themes. Field Methods, 15, 85–109.

33.

Shelly

(2004). Women from another planet? Feminism and AC awareness. Received from http://solashelly.tripod.com/Women.pdf

34.

Singer

(1999). Why can’t you be normal for once in your life? From a ‘problem with no name’ to the emergence of a new category of difference. In Corker

French

(Eds.), Disability discourse (pp. 59–67). Buckingham, England: Open University Press.

35.

Swedo

S. E.

Baird

Cook

E. H.

Jr Happe

F. G.

Harris

J. C.

Kaufmann

W. E.

… Rogers

S. J.

(2012). Commentary from the DSM-5 workgroup on neurodevelopmental disorders. Journal of the American Academy of Child & Adolescent Psychiatry, 51, 347–349.

36.

Tanguay

P. E.

(2011). Autism in DSM-5. American Journal of Psychiatry, 168, 1142–1144.

37.

Turygin

Matson

J. L.

Beighly

Adams

(2013). The effect of DSM-5 criteria on the developmental quotient in toddlers diagnosed with autism spectrum disorder. Developmental Neurorehabilitation, 16, 38–43.

38.

Via

Radua

Cardoner

Happe

Mataix-Cols

(2011). Meta-analysis of gray matter abnormalities in autism spectrum disorder: Should Asperger’s disorder be subsumed under a broader umbrella of autism spectrum disorder? Archives of General Psychiatry, 68, 409–418.

39.

Viera

A. J.

Garrett

J. M.

(2005). Understanding interobserver agreement: The kappa statistic. Family Medicine, 37, 360–363.

40.

Worley

J. A.

Matson

J. L.

(2012). Comparing symptoms of autism spectrum disorders using the current DSM-IV-TR diagnostic criteria and the proposed DSM-V diagnostic criteria. Research in Autism Spectrum Disorders, 6, 965–970.

41.

K. K.

Cheung

Chua

S. E.

McAlonan

G. M.

(2011). Can Asperger syndrome be distinguished from autism? An anatomic likelihood meta-analysis of MRI studies. Journal of Psychiatry and Neuroscience, 36, 412–421.