Article

Research on Social Work Practice

2014, Vol 24(1) 67-77
Opinions of People Who Self-Identify With The Author(s) 2013
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Autism and Aspergers on DSM-5 Criteria DOI: 10.1177/1049731513495457
rsw.sagepub.com

Kristen Faye Linton1, Taylor E. Krcek2,

Leonard M. Sensui1, and Jessica L. H. Spillers1

Abstract
Purpose: Autistic disorder (AD), Aspergers syndrome (AS), and pervasive developmental disordernot otherwise specified
(PDD-NOS) have been removed from the Diagnostic and Statistical Manual of Mental DisordersFifth Edition (DSM-5). It now
contains the autism spectrum disorder (ASD) diagnosis. This study assessed how people with AD and AS felt about the DSM-5
ASD criteria. 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, DSM-5, Aspergers, gender, validity

Autistic disorder (AD), Aspergers syndrome (AS), and perva-
sive developmental disordernot otherwise specified (PDD-
NOS) have been removed from the Diagnostic and Statistical
Manual of Mental DisordersFifth 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 Neurodevelopmen-
tal 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 Widi-
ger (2012) reported that autism is an overdiagnosed epidemic
and cautioned the DSM-5 workgroup from creating new epi-
demics. 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 encour-
aged in the development of DSM-5. The public provided feed-
back 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 peo-
ple with AD, AS, and PDD-NOS are at risk of not fitting cri-
teria 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 par-
ticipants who self-identified with AD and AS on Internet dis-
cussion forums that disclosed how people who self-identified
with AD and AS critiqued the DSM-5 ASD diagnostic criteria.
1
Myron B. Thompson School of Social Work University of Hawaii at Manoa,
HI, USA
2
College of Social Work, University of Tennessee at Knoxville, TN, USA
Corresponding Author:
Kristen Faye Linton, Myron B. Thompson School of Social Work, University of
Hawaii at Manoa, 1800 East-West Road, Honolulu, HI 96822, USA.
Email: kfbean@hawaii.edu
68 Research on Social Work Practice 24(1)

DSM-IV-TR and DSM-5 Changes initial diagnoses. In addition, the two sites used for the field
trials were academic rather than community settings, where
The DSM-IV-TR placed autism-related diagnoses under the
most diagnoses occur (Lai, Lombardo, Chakrabarti, & Baron-
category of PDD. There were three autism-related disorders
Cohen, 2013). While a primary concern over the DSM-5
included in PDD: AD, AS, and PDD-NOS. The changes in the
changes to autistic-related diagnoses are regarding people
DSM-5 replace the PDD category with an ASD diagnosis
with AD, AS, and PDD-NOS receiving the ASD diagnoses,
thereby omitting AD, AS, and PDD-NOS (American Psychia-
the field trials demonstrated that children who did not receive
tric Association, 2000, 2012).
a diagnosis of ASD received a social communication disorder
While some refer to the DSM-5 as a dimensional model, oth-
diagnosis, which includes criteria for difficulties in social and
ers believe the DSM-5 utilizes a fusion of categorical and
communication, but does not require difficulties in repetitive
dimensional models (Frazier et al., 2012; Tanguay, 2011). The
behaviors (Regier et al., 2013).
categorical perspective posits that there are observable differ-
ences between people with and without ASD. The dimensional
perspective posits that differences between people with and Validity
without ASD is a matter of degree, thus no distinct ASD cate-
Discussions of validity regarding the DSM-5 ASD diagnosis
gory exists (Frazier et al., 2012). This is represented in the
revolve around the consolidation of AD, AS, and PDD-NOS
DSM-5, since the ASD diagnoses will include a level of service
into ASD. Research has assessed diagnostic outcomes for sam-
need implying a matter of degree (American Psychiatric Asso-
ples of children and adolescents according to the DSM-IV-TR
ciation, 2012). Frazier and colleagues (2012) expressed that
and the DSM-5. Among a sample of children aged 216 with
both perspectives are reflected in the DSM-5, because it pre-
diagnoses of AD (n 59), AS (n 18), and PDD-NOS (n
sents a category of ASD and two symptom dimensions.
34) with DSM-IV-TR receiving diagnoses at a community aut-
Not only does the DSM-5 change the taxonomic structure of
ism assessment site, 26 did not meet the criteria for diagnosis of
the autism-related diagnoses, but it also creates new criteria for
ASD in the DSM-5 (Gibbs et al., 2012). Among the 26 children
a diagnosis of autism (Table 1). The following juxtaposition of
who did not obtain a diagnosis of ASD were children with AD
the DSM-IV-TR autism-related and the DSM-5 ASD diagnoses
(10.2%), AS (16.6%), and PDD-NOS (50%). This demon-
illustrates vast differences in the definition of autism. It does
strates that people with autism-related diagnoses from the
not appear that AD, AS, and PDD-NOS are easily collapsed
DSM-IV-TR may not fit criteria for the ASD diagnosis, and
into ASD. There are three domains of experience that encapsu-
people with PDD-NOS may be the least likely to fit criteria.
late AD in the DSM-IV-TR: social, communication, and atypi-
Clinicians notes indicated that reasons for failure to meet cri-
cal behaviors. The DSM-5 ASD diagnosis includes two
teria for ASD were insufficient evidence of impairment in RRB
domains: socialcommunication and restricted/repetitive beha-
(n 14), displaying intact use of nonverbal behaviors (n 8),
viours (RRB). The social and communication behaviors are
and not meeting criteria for deficits in social emotional reci-
combined into one domain in the DSM-5. The RRB domain
procity or developing and maintaining relationships (n 4;
added sensory abnormalities, which are not included in the
Gibbs et al., 2012). Other research of children and adolescents
DSM-IV-TR. In the DSM-5, clients must meet all the three
also found statistically significant differences between the
requirements in the socialcommunication domain, whereas
DSM-IV-TR and DSM-5 groups in the socialcommunication
the DSM-IV-TRs AD required only two from social domain
domain (Turygin, Matson, Beighly, & Adams, 2013; Worley
and one from communication domain. AS required two of the
& Matson, 2012).
four criteria to be met for social domain, no requirement for
While the previously presented research has described how
communication domain, and an on-time acquisition of lan-
many people with AD, AS, and PDD-NOS meet criteria for
guage. The DSM-5 ASD diagnosis requires two of the four
ASD, other research focused on specificity and sensitivity. This
RRB to be met, while DSM-IV-TR diagnoses for AD and AS
research makes the assumption that a true positive (specificity)
required one RRB. No RRB was required for PDD-NOS in the
is when a person with AD, AS, or PDD-NOS received a diag-
DSM-IV-TR. The DSM-5 ASD diagnosis also requires that
nosis of ASD, and a true negative (sensitivity) is when a person
symptoms were present in early childhood. An onset criterion
who has AD, AS, or PDD-NOS did not receive a diagnosis of
was only included for AD in the DSM-IV-TR (American Psy-
ASD. Four studies assessing specificity and sensitivity among
chiatric Association, 2000, 2012).
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; McPart-
Reliability land et al., 2012). Sensitivity of the DSM-5 could reduce false
A major reason for changes to autism-related diagnoses in positives by more than 4 times the estimated DSM-IV-TR rate
DSM-5 is reliability. Among a sample of 64 children, DSM-5 (DSM-5 3% vs. DSM-IV-TR 14%; Frazier et al., 2012).
field trials demonstrated reasonable testretest reliability of the While specificity was high for people with diagnoses of
ASD diagnosis (k 0.69, confidence interval [0.58, 0.79]; AD using DSM-5 (100%), only 27% of children with PDD-
Regier et al., 2013). However, the field trials did not include NOS received a diagnosis of ASD in one study (Mayes et al.,
children under age 6, which is when children typically receive 2013). Research found that reducing one less symptom
 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 Six or more items from (1), (2), and (3), with at least two from (1), and one each Qualitative impairment in social
contexts, not accounted for by general developmental delays, and manifest from (2) and (3): interaction, as manifested by at least
by all three of the following: two of the following:
1. Qualitative impairment in social interaction, as manifested by at least two of
1. Deficits in socialemotional reciprocity; ranging from abnormal social the following: (a) marked impairment in the use of multiple nonverbal 1. Marked impairment in the use of
approach and failure of normal back and forth conversation through behaviors such as eye-to-eye gaze, facial expression, body postures, and ges- multiple nonverbal behaviors such
reduced sharing of interests, emotions, and affect and response to total lack tures to regulate social interaction, (b) failure to develop peer relationships as eye-to-eye gaze, facial expres-
of initiation of social interaction appropriate to developmental level, (c) a lack of spontaneous seeking to share sion, body postures, and gestures to
enjoyment, interests, or achievements with other people (e.g., by a lack of regulate social interaction
2. Deficits in nonverbal communicative behaviors used for social showing, bringing, or pointing out objects of interest), (d) lack of social or
interaction; ranging from poorly integratedverbal and nonverbal emotional reciprocity 2. Failure to develop peer relation-
communication, through abnormalities in eye contact and body language, ships appropriate to developmental
or deficits in understanding and use of nonverbal communication, to total 2. Qualitative impairments in communication as manifested by at least one of level
lack of facial expression or gestures 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 3. A lack of spontaneous seeking to
3. Deficits in developing and maintaining relationships, appropriate to communication such as gesture or mime), (b) in individuals with adequate share enjoyment, interests, or
developmental level (beyond those with caregivers); ranging from speech, marked impairment in the ability to initiate or sustain a conversation achievements with other people
difficulties adjusting behavior to suit different social contexts through with others, (c) stereotyped and repetitive use of language or idiosyncratic (e.g., by a lack of showing, bringing,
difficulties in sharing imaginative play and in making friends to an apparent language, (d) lack of varied, spontaneous make-believe play, or social imitative or pointing out objects of interest
absence of interest in people play appropriate to developmental level to other people)

3. Restricted repetitive and stereotyped patterns of behavior, interests, and 4. Lack of social or emotional
activities, as manifested by at least one of the following: (a) encompassing reciprocity
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
B Restricted, repetitive patterns of behavior, interests, or activities as Delays or abnormal functioning in at least one of the following areas, with onset Restricted repetitive and stereotyped
manifested by at least two of the following: prior to age 3: (1) social interaction, (2) language as used in social patterns of behavior, interests, and
communication, or (3) symbolic or imaginative play activities, as manifested by at least
1. Stereotyped or repetitive speech, motor movements, or use of objects one of the following:
(such as simple motor stereotypies, echolalia, repetitive use of objects, or
idiosyncratic phrases) 1. Encompassing preoccupation
with one or more stereotyped and
2. Excessive adherence to routines, ritualized patterns of verbal or restricted patterns of interest that is
nonverbal behavior, or excessive resistance to change (such as motoric abnormal either in intensity of focus
rituals, insistence on same route or food, repetitive questioning, or
extreme distress at small changes) 2. Apparently inflexible adherence
to specific, nonfunctional routines,
3. Highly restricted, fixated interests that are abnormal in intensity or focus or rituals
(such as strong attachment to or preoccupation with unusual objects,
excessively circumscribed or perseverative interests) 3. Stereotyped and repetitive motor
mannerisms (e.g., hand or finger
4. Hyper- or hyporeactivity to sensory input or unusual interest in sensory flapping or twisting, or complex
aspects of environment (such as apparent indifference to pain/heat/cold, whole-body movements)
adverse response to specific sounds or textures, excessive smelling or
touching of objects, fascination with lights or spinning objects) 4. Persistent preoccupation with

69
parts of objects
(continued)
70
Table 1. (continued)

DSM-5 DSM-IV-TR

ASD AD AS

C Symptoms must be present in early childhood (but may not become fully The disturbance is not better accounted for by Retts disorder or childhood The disturbance causes clinically
manifest until social demands exceed limited capacities) disintegrative disorder 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 environ-
ment in childhood
F Criteria are not met for another
specific pervasive developmental
disorder or schizophrenia

Note. AD Autistic disorder; AS Aspergers syndrome; ASD autism spectrum disorder; DSM-IV-TR Diagnostic and Statistical Manual of Mental DisordersFourth EditionText Revision; DSM-5 Diagnostic and Statistical
Manual of Mental DisordersFifth Edition.
Linton et al.
requirement from either socialcommunication 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 diagno-
sis, 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 func-
tion and structure in areas of the brain that impacted social and
pragmatic language deficits, syntacticsemantic language def-
icits, 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 signifi-
cantly 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 chal-
lenges 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 pro-
posed criteria for the DSM-5 ASD diagnosis. Data were from
71
discussion forums on WrongPlanet.net where people with
self-identified diagnoses of AD and AS created and partici-
pated in two discussion boards related to the changes in the
ASD diagnosis in the DSM-5. Participants assessment of pro-
posed 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) advo-
cated 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 communica-
tion 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, generaliz-
able 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 meth-
odology used to assess community viewpoints on a topic,
discussion forum data can be used in place of focus groups
72
(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 infor-
mation 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 profes-
sionals. For example, a participant reported, Thats why I say
that experts frequently dont 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
Aspergers 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 dis-
cussed 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 Neurodevelop-
mental 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
Research on Social Work Practice 24(1)
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 discus-
sion 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 demo-
graphics 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 par-
ticipants 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 identify-
ing 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 dis-
cussion board data (QSR, 2008). All text were analyzed for
meeting criteria of the new DSM-5 ASD diagnosis. Every sec-
tion 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 sev-
eral times until agreement was reached and broad themes were
Linton et al.
apparent. The third and fourth authors coded all text pertaining
to meeting criteria for the new DSM-5 ASD diagnosis using the
codebook. A k of .79 was reached suggesting good agreement
among raters (Orwin, 1994). k is a measure widely used for
agreement (Orme & Gillespie, 1986; Viera & Garrett, 2005).
The k value in this study refers to agreement between the two
raters on 193 statements. This use of the k 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 pro-
posed 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 diag-
nosis 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 require-
ment 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 schizo-
typal, which doesnt fit at all. I had to go see an AS specialist on
my own to get any sensible explanations.
73
Some participants believed that the ASD diagnosis in the
DSM-5 would improve the reliability of diagnoses with ade-
quate 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 expe-
rience more stability in their diagnosis: People wont 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; there-
fore, 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 Asper-
gers 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 cant figure out what to call it so they call it that.
Validity: You Dont 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 diag-
nosis that caters to prejudice. However, many participants
discussed the validitythat 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 discus-
sions on validity. Some people felt that the new diagnosis is
too simplistic, while others felt that it narrows the spec-
trum. A man described the potential consequences of the sim-
plistic 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.
74
While some people who self-identified with AS were con-
cerned, 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 dont think they are very accu-
rately 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 par-
ticipants felt that they should easily be able to fit criteria for the
DSM-5 ASD diagnosis:
I dont understand how anyone diagnosed as autistic couldnt fit
the new criteria. Its extremely basic. You dont have autism
because you are odd, you have autism because youre impaired
in social communication and have restricted behaviour and
interests starting in childhood. And thats basically what it calls
for.
Neurobiological Research: Whether or Not Aspergers
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. Partici-
pants were knowledgeable of the limitations of neurological
research: Neuroscience is still a very new field, and there is
a lot we dont 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 dont says that there is something differ-
ent about HFA brains than Aspie brains. Maybe the difference is
small, but we need to find out for neurosciences sake. And if the
label of Aspergers 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:
Research on Social Work Practice 24(1)
There is quite enough research done on Asperger to separate it into
different subcategories. The ability to give details in the descrip-
tion 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 Aspergers is a form of autism.
High Functioning: I Dont 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 soci-
ety than a low functioning autistic ever could be. Other people
expressed concerns about this issue, but discussed it as a stereo-
type, rather than a fact. For example:
I dont want to necessarily be called autistic, because I dont want
to be treated like I have full-on autism, you know? I think my big-
gest 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 NTs [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, Im 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 arent 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 gener-
ally 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 espe-
cially 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:
Linton et al.
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 couldnt be autistic. At that time it
wasnt 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 cri-
teria 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 diagno-
sis 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 cri-
teria is less sensitive to female-specific behaviors. The discus-
sion 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 dis-
cussed reciprocity expressed concern that the proposed word-
ing 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 defi-
cits in social-emotional reciprocity in ASD (American Psy-
chiatric 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 mini-
mal arguments among participants even when faced with dis-
agreement, 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 for-
ums for data collection, participants self-identification of
75
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 methodolo-
gical limitations to analyzing discussion board data. The use of
only one website chosen from the study limits the generaliz-
ability 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 partici-
pants with direct questions or probes. In addition, participants
of the discussion board on DSM-5 may have had stronger feel-
ings about changes to the DSM-5 than the general population.
The investigators used self-report data of participants demo-
graphic and diagnostic characteristics. In addition, the discus-
sions 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 infor-
mation has implications for practice with DSM-5 and future
versions of the DSM. Finally, this study does not represent feel-
ings 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 function-
ing 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 abil-
ities (American Psychiatric Association, 2012). As expressed
in research, some people with AD diagnoses identify as experi-
encing 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 tran-
sition 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
76
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 (Fom-
bonne, 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 diag-
nosis, 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.
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.
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