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DOI 10.1007/s10803-013-1799-6
ORIGINAL PAPER
Introduction
Autism Spectrum Disorder (ASD) is a neurodevelopmental
disorder with a prevalence currently estimated at 1 in 80
individuals (Pinborough-Zimmerman et al. 2012). In recent
years there has been a rise in reported rates of ASD. The
reason for this is unclear, but changes in diagnostic practice
are likely to have contributed (Fombonne 2005). Also, a
formal diagnosis of an ASD is often used as a gatekeeper
for services and support. Therefore changes in diagnostic
practice may have important implicationsboth for clinical prevalence rates and for an individuals care options.
An Autism Spectrum Disorder is diagnosed on the basis
of three domains: impaired social interaction, abnormal
communication, and restricted and repetitive behaviours
and interests. Using current diagnostic criteria in the
International Classification of Diseases (ICD-10R; World
Health Organization 1993) and the Diagnostic and Statistical Manual (DSM-IV-TR; American Psychiatric Association 2000), ASD comes under the umbrella term of
Pervasive Developmental Disorder (PDD) and an individual may be defined as having one of four diagnostic subtypes according to the range of symptoms and the presence/
absence of factors such as developmental language delay
and intellectual disability (i.e., Asperger Syndrome,
Childhood Autism/Autistic Disorder, Atypical Autism,
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and Perry 2012; Worley and Matson 2012). This highlights a key concern of some: that the new criteria will fail
to capture individuals currently receiving an ASD diagnosis who are on the broader spectrum according to
DSM-IV-TR or ICD-10R criteria (e.g., Pervasive Developmental Disorder-not otherwise specified; PDD-NOS).
As a consequence it is feared by some that these individuals will be denied access to services. Reassuringly,
however, a large study of children diagnosed within the
PDD category according to DSM-IV-TR suggested that
sensitivity of DSM-5 is very good (0.91) although sensitivity in this study was much lower (0.53) (Huerta et al.
2012).
The effect of the proposed changes for adults has
received relatively little attention. This is of importance
because ASD is a lifelong condition therefore most people
with ASD are adults. Moreover, the number of individuals
presenting for first diagnosis in adulthood is rapidly
increasing: at the National ASD assessment service at the
South London and Maudsley in the UK, the number of
ASD assessments per month increased fourfold between
2005 and 2010 (Murphy et al. 2011). Further, diagnosis is
particularly challenging in this group because a developmental history is often unavailable and/or unreliable; and
presentation is frequently complicated by additional
mental health conditions (Carpenter 2012). The only prior
study that explored the agreement between current and
proposed ASD criteria in adults included only individuals
with (mostly profound) intellectual disability living in
residential centers (Matson et al. 2012); they reported that
approximately one third of the individuals who met DSMIV-TR criteria no longer met them using the draft DSM-5.
This study was a valuable first step. However, the
majority of the ASD population does not have profound
intellectual impairment (Baird et al. 2000) and such
people are assessed within mental health or social/educational services. Also, it is unknown what proportion of
individuals would qualify for the new, alternative diagnosis of SCD.
Our primary aim, therefore, was to investigate how
diagnostic outcomes of the DSM-5 algorithm differed from
both ICD-10R and the DSM-IV-TR when applied in a
clinical health service; and to compare all three algorithms
to so-called gold-standard research diagnostic assessment
tools (the Autism Diagnostic Interview-Revised (ADI-R;
Lord et al. 1994) and Autism Diagnostic Observation
Schedule (ADOS-G; Lord et al. 2000). Our secondary aims
were to investigate whether diagnostic outcomes were
affected by participant characteristics (age, sex, IQ, presence of additional mental health conditions), or alterations
to the formulation of the proposed algorithm. Specifically,
the impact of reducing the number of criteria required for a
formal diagnosis was examined, and also the treatment of
2517
criteria where the clinician was uncertain or had insufficient information to code the item.
Method
Clinical Assessment
Participants
Participants included 158 individuals consecutively assessed for ASD in a specialist National tertiary ASD diagnostic clinic for adults between January and May 2011. The
clinic is situated within the South London and Maudsley
NHS Foundation Trust. People are typically referred by
their local family physician/general practitioner (GP) or
consultant psychiatrist for a second opinion. In 8 cases
diagnosis was inconclusive due to a history of acquired
head injury or the presence of severe psychotic symptoms
during assessment. Data from these cases were excluded
from the study. The remaining 150 participants were aged
1865 years, with a mean age of 31 years. There were 110
males (mean age 32 years) and 40 females (mean age
31 years). Seventy-three patients already had a diagnosis of
a mental health condition (most commonly depression,
anxiety, Obsessive Compulsive Disorder (OCD), or
Attention Deficit Hyperactivity Disorder (ADHD)), and
only 7 of these had previously been diagnosed with ASD.
Measures
The ADI-R and ADOS-G are gold-standard research
diagnostic assessment tools for ASD. The ADI-R is a semistructured interview with the parent or caregiver assessing
ASD traits during childhood, and the ADOS-G is assessment completed with the patient assessing current traits of
ASD. High levels of testretest reliability have been
reported for both the ADI-R (in all domains, j [ 0.6; Hill
et al. 2001), and the ADOS-G (in social and communication domains, j [ 0.7; Lord et al. 2000). Well-validated
self-rating questionnaires were used to assess levels of
other mental health conditions. The Obsessive Compulsive
Inventory-Revised (OCI-R; Foa et al. 2002) was used to
assess traits of OCD, and has high internal consistency
when used among patients with OCD (a = .83) and
patients with other anxiety disorders (a = .88), (Abramowitz and Deacon 2006). Symptoms of ADHD were assessed using the Barkleys Current and Childhood Symptom
Scales (Barkley and Murphy 2005), which is a self- and
informant-rated questionnaire used widely in clinical
assessments for ADHD in adults (Barkley 2011). Finally,
the Hospital Anxiety and Depression Scale (HADS; Zigmond and Snaith 1983) was used to assess levels of anxiety
and depression, and has high levels of internal consistency
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Results
Conclusions of Initial Diagnostic Assessments
ICD-10R Versus DSM-5 (Table 1)
Of the 150 participants, 113 (75 %) met criteria for an ASD
according to the ICD-10R (Childhood Autism, Asperger
Syndrome or PDD-unspecified). In contrast, however,
according to the DSM-5, only 63 (42 %) met ASD criteria:
this was a highly significant decline, v2(1) = 35.6,
p \ 0.001. A further 21 (14 %) participants met DSM-5
criteria for SCD. Overall, therefore, of those individuals
positive for ASD on ICD-10R, 74 % (84 of 113) met criteria
for ASD or SCD on DSM-5. Nevertheless, the proportion of
individuals with no diagnosis at all (ASD or SCD) remained
significantly higher when applying the DSM-5 criteria
instead of ICD-10R (v2(1) = 62.5, p \ 0.001). None of the
participants that were ASD negative using ICD-10R met
diagnostic criteria for ASD (or SCD) according to the
DSM-5, thus specificity of the DSM-5 was 100 %.
DSM-IV-TR Versus DSM-5 (Table 1)
The rate of ASD positive diagnosis using DSM-5 (42 %)
was also significantly lower than the rate of Autistic Disorder or Asperger Syndrome assessed using DSM-IV-TR
(53 %), v2(1) [ 82.5, p \ 0.001. Additionally, two individuals were diagnosed with ASD on the DSM-5, but not
with Autistic Disorder or Asperger Syndrome on the
2519
ASD fullthreshold
Below ASD
threshold
PDDunspecified or
SCD
No
diagnosis
ICD-10R,
% (N)
51 (76)
50 (74)
25 (37)
25 (37)
DSM-IV-TR,
% (N)
53 (80)
47 (70)
N/A
N/A
DSM-5,
% (N)
42 (63)
58 (87)
14 (21)
44 (66)
Table 2 Percentage of participants in each diagnostic group scoring above and below threshold on ADI-R and ADOS-G, and sensitivity and
specificity of each diagnostic algorithm compared to ADI-R/ADOS-G. % (N)
ADI-R below
cut-off (%)a
ADI-R above
cut-off (%)a
ADOS-G below
cut-off (%)b
ADOS-G above
cut-off (%)b
96 (27)
4 (1)
75 (35)
25 (15)
36 (17)
64 (30)
32 (12)
68 (25)
ICD-10R
Sensitivity: 0.97*
Sensitivity: 0.63*
Specificity: 0.61
Specificity: 0.74
96 (27)
4 (1)
75 (36)
25 (12)
36 (17)
64 (30)
28 (11)
71 (28)
DSM-IV-TR
Sensitivity: 0.97*
Sensitivity: 0.70**
Specificity: 0.61
Specificity: 0.77
83 (29)
17 (6)
64 (36)
36 (20)
38 (15)
63 (25)
36 (11)
65 (20)
DSM-5
Sensitivity: 0.81
Sensitivity: 0.50
Specificity: 0.66
Specificity: 0.77
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2520
ICD 10R/DSM-IV-TR
diagnosis
ICD-10R, % (N)
DSM-IV-TR, % (N)
DSM-5
ASD
DSM-5
SCD
DSM-5 ASD:
relax A
DSM-5 ASD:
relax B
DSM-5 ASD:
relax A and B
ASD, (N = 113)
56 (63)
19 (21)
69 (78)**
70 (79)**
87 (98)**
82 (23)
11 (3)
86 (24)
93 (26)
96 (27)
69 (33)
15 (7)
83 (40)*
83 (40)*
98 (47)**
PDD-unspecified, (N = 37)
19 (7)
30 (11)
38 (14)*
35 (13)*
65 (24)**
3 (2)
13 (9)
14 (10)*
10 (7)*
27 (19)**
ASD, (N = 80)
77 (61)
15 (12)
85 (68)*
90 (72)**
99 (79)**
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Discussion
This is the first study to investigate how the DSM-5 criteria for ASD might perform in a specialist diagnostic
clinic for adults without significant intellectual disabilitywho form a large proportion of individuals with
ASD.
Our findings suggest that the specificity of the DSM-5
criteria, as compared to the currently used ICD-10R and
DSM-IV-TR criteria, is good. However, sensitivity is relatively poor. For instance, 44 % of the participants that
received a diagnosis of an ASD according to ICD-10R did
not meet DSM-5 criteria. Similarly, 22 % of the individuals that met criteria for Asperger Syndrome or Autistic
Disorder on DSM-IV-TR would not qualify for a DSM-5
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2522
Appendix continued
Conclusions
Appendix 1
ICD-10R algorithm, with corresponding DSM-IV-TR
items provided alongside each criterion. Of the participants
that were diagnosed with ASD on the ICD-10R, the proportion of participants that were coded Yes, No and
Unclear for each item is given.
ICD-10R: ASD
positive group
92.0
3.5
4.4
79.6
7.1
13.3
38.1
24.8
37.2
Yes
No
Unclear
23.9
51.3
24.8
94.7
5.3
38.9
50.4
10.6
51.3
24.8
23.9
Yes
No
Unclear
ICD-10R: ASD
positive group
Yes
No
Unclear
78.8
13.3
8.0
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2523
Appendix continued
Appendix continued
ICD-10R: ASD
positive group
66.4
20.4
13.3
56.6
25.7
17.7
DSM-5 Algorithm
ICD-10R:ASD
positive group
2b; 1c; 1d
94.7
1.8
3.5
1a;
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?
80.5
13.3
6.2
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?
93.8
2.7
3.5
CRITERION B: Are
there restricted,
repetitive patterns of
behavior, interests, and
activities, as manifested
by AT LEAST TWO of
the following:
Yes
No
Unclear
1. Stereotyped or
repetitive speech, motor
movements, or use of
objects (such as, simple
motor stereotypies and
echolalia, repetitive use
of objects, or
idiosyncratic phrases)?
54.9
33.6
11.5
17.7
65.5
16.8
27.4
50.4
22.1
Appendix 2
DSM-5 algorithm indicating the proportion of participants
diagnosed with ASD on the ICD-10R that were coded
Yes, No and Unclear for each item. Criteria from
ICD-10R that contribute to each DSM-5 criterion are
indicated, and underlined sections indicate sections not
explicitly in ICD-10R criteria.
Criteria from
ICD-10R
DSM-5 Algorithm
ICD-10R:
ASD positive group
CRITERION A: Are
there 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:
Yes
No
Unclear
2c; 3c; 3d
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2524
Appendix continued
DSM-5 Algorithm
ICD-10R:ASD
positive group
2c; 3b
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)?
57.5
25.7
16.8
3a; 3d
3. Highly restricted,
fixated interests that is
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)?
66.4
22.1
11.5
18.6
31.0
50.4
3d
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