J Autism Dev Disord (2016) 46:2000–2016
DOI 10.1007/s10803-016-2731-7
ORIGINAL PAPER
Severity of Autism Spectrum Disorders: Current
Conceptualization, and Transition to DSM-5
Margaret H. Mehling1 • Marc J. Tassé1
Published online: 12 February 2016
Ó Springer Science+Business Media New York 2016
Abstract Mirroring the evolution of the conceptualization
of autism has been changes in the diagnostic process,
including the most recent revisions to the DSM-5 and the
addition of severity-based diagnostic modifiers assigned on
the basis of intensity of needed supports. A review of recent
literature indicates that in research stratifying individuals on
the basis of autism severity, core ASD symptomology is the
primary consideration. This conceptualization is disparate
from the conceptualization put forth in DSM-5 in which
severity determination is based on level of needed support,
which is also impacted by cognitive, language, behavioral,
and adaptive functioning. This paper reviews literature in
this area and discusses possible instruments that may be
useful to inform clinical judgment in determining ASD
severity levels.
Keywords Autism spectrum disorder
DSM-5

Severity
Diagnostic modifier
Assessment
Introduction
Since its first inclusion in DSM-III [American Psychiatric
Association (APA) 1980], severity has not been specified
as part of an autism diagnosis. Initially, among Kanner’s
(1943) fairly homogeneous and narrowly defined cohort,
there was arguably no need to describe varying degrees of
& Margaret H. Mehling
mehling.19@osu.edu
Marc J. Tassé
Marc.tasse@osumc.edu
1
Nisonger Center, The Ohio State University, McCampbell
Hall Room 279, 1581 Dodd Dr, Columbus, OH 43210, USA
123
severity. Since the inclusion of different related pervasive
developmental disorder diagnoses into the broad autism
spectrum condition in DSM-IV (APA 1994) and DSM-IV-
TR (APA 2000), it has become evident that the etiology,
treatment, and course of more ‘‘mild’’ autism is, in many
cases, quite distinct from that of more ‘‘severe’’ autism
(Rutter 2011; Venker et al. 2014a, b).
This variability in treatment, course, and outcome has
spurred increasing interest in autism severity as a construct.
Research exploring severity of core autism spectrum dis-
order (ASD) symptomology includes the work of Gotham
et al. (2012a, b) who examined longitudinal trajectories of
ASD severity from early childhood to early adolescence in
345 individuals with ASD and found that, overall, the
majority of children remained stable in their ASD severity
scores over an 8–12 year period with more than 80 %
assigned to stable groups of high (46 % of 339 participants)
or moderate (38 % of 339 participants) severity (Gotham
et al. 2012a, b). Fewer than 20 % of participants belonged
to longitudinal trajectory classes characterized by change
in core ASD symptom severity with 9 % displaying
increased symptoms of ASD (worsening class) and 7 %
displaying decreased symptomology (improving class)
across time (Gotham et al. 2012a, b). This research sup-
ports the notion that determination and specification of
ASD severity at time of diagnosis and re-evaluation is
valuable as it may convey important information about
symptom course and prognosis.
Findings from Gotham et al. (2012a, b) also indicated
that autism severity was associated with various other
functional measures including verbal IQ and measures of
adaptive functioning. Specifically, baseline verbal IQ was
highest in the improving and worsening classes and
increased at the greatest rate in the improving class.
Adaptive behavior declined in all classes except the
J Autism Dev Disord (2016) 46:2000–2016
improving class; however, adaptive functioning was con-
sistently impaired across groups (Gotham et al. 2012a, b).
This supports the notion that autism characteristics and
cognitive and adaptive functioning are not totally inde-
pendent features (Gotham et al. 2012a, b).
In addition to core symptoms of ASD, there are many
comorbidities, including behavior problems, psy-
chopathology, associated genetic etiology (e.g. Fragile X
syndrome), related and unrelated syndromes, and health
conditions that exert an influence on functioning and likely
impact severity of expression of core symptomology of
ASD (Matson and Goldin 2014). Furthermore, factors such
as IQ may have a moderating effect on expression of core
ASD symptomology, affecting the topography of symptom
expression in addition to its severity (Matson and Goldin
2014). These complexities pose significant challenges for
researchers, clinicians, service providers, and educators
when conceptualizing varying levels of severity to describe
symptomology, predict prognosis, guide educational plan-
ning, inform intervention and stratify individuals for
research purposes.
Current Conceptualization of Autism Severity
To date, autism severity has been informally conceptual-
ized on the basis of IQ, level of language acquisi-
tion/functioning, and severity of behavioral problems, and
has been used informally to both stratify individuals with
ASD for research and to offer information regarding
prognosis to parents, caregivers, and educators (Gotham
et al. 2009; Rutter, 2011; Weitlauf et al. 2014). Currently,
in children with ASD, severity is generally conceptualized
in terms of language deficits, cognitive impairment, adap-
tive behavior impairment, and presence of challenging
behavior such as aggression (Weitlauf et al. 2014).
In other cases, severity of core ASD features has been
estimated using direct measures of ASD symptomology
like the Autism Diagnostic Observation Schedule (ADOS;
Lord et al. 2012) and the Autism Diagnostic Interview,
Revised (ADI-R; Le Couteur et al. 2003). Some researchers
use ADOS classification thresholds (Autism, Autism
Spectrum, Non-Spectrum) and ADOS raw totals as addi-
tional proxies for autism severity (Gotham et al. 2009).
While it is true that higher ADI-R and ADOS scores
indicate endorsement or observation (respectively) of a
greater number of items representing core deficits associ-
ated with ASD, and likely greater severity of impairment,
raw and total scores for the ADOS and ADI-R were not
normalized for this purpose and vary in degree to which
they correlate with IQ and chronological age which may
confound assessment of severity of core ASD sympto-
mology (Gotham et al. 2009).
2001
Researchers have also classified individuals with ASD
on the basis of their level of intellectual functioning as a
proxy for severity (Allan et al. 2001; Di Rezze et al. 2012;
Nicholas et al. 2008; Tsatsanis et al. 2003). However, using
IQ as a proxy for clinical severity may not adequately
characterize variations in ability and functioning among
individuals with ASD as research indicates that severity of
impairment is inconsistent across domains (core ASD
symptomology, cognitive functioning, adaptive function-
ing, expressive language level, etc.) for individuals with
ASD (Di Rezze et al. 2012). Despite this, it is common for
individuals with ASD to be classified as ‘‘high’’ or ‘‘low’’
functioning, at least informally, on the basis of IQ.
In current research and practice there exists no clearly
defined criteria by which to weigh the importance of these
different variables when making severity determinations
for clinical or research purposes (Bernier 2012; Weitlauf
et al. 2014). Furthermore, when conceptualizing severity,
clinicians and researchers may differ in their focus on core
ASD versus associated (e.g. challenging behaviors, lan-
guage ability) symptoms (Rutter 2011). Therefore, a more
holistic approach of severity determination is clearly nee-
ded and may be found through incorporating measures of
intensity of needed support.
The DSM-5 (APA 2013) offers the opportunity to dis-
tinguish between various subsets of children with ASD by
assigning ‘‘severity ratings’’ based on the ‘‘severity of
support needs’’ separately for both social communication
and restricted/repetitive behavior symptom categories
respectively. This conceptualization of ASD severity rep-
resents a major paradigm shift from a focus on level of
impairment based on amount of ASD symptomology to a
focus on intensity of needed supports. Thompson et al.
(2002) defined supports as ‘‘resources and strategies that
promote the interests and welfare of individuals and that
result in enhanced personal independence and productivity,
greater participation in an interdependent society,
increased community integration, and/or an improved
quality of life’’ (p. 390). Level of needed supports might be
thought of as comparable to severity of impairment in that
both refer to the environmental modification necessary to
optimize daily functioning and enhance quality of life
(Weitlauf et al. 2014). However, focusing on needed sup-
ports emphasizes a ‘‘disability in context’’ rather than the
‘‘disability in person’’ model and provides more practical
information for practitioners regarding improving adaptive
functioning and overall quality of life.
This paper intends to contribute to the field’s thinking
regarding autism severity by offering the following: (1) a
targeted review of how researchers operationalize severity
when stratifying individuals with autism for research pur-
poses in the recent literature and commentary on how this
is disparate from the conceptualization of autism severity
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2002
put forth in DSM-5; (2) a review of measures used in the
diagnosis of autism or in the assessment of autism severity
to make recommendations regarding measures that may be
useful in the assessment of autism severity as conceptual-
ized by DSM-5; and (3) recommendations regarding the
measures that have the most potential for usefulness in
assessing ASD severity as conceptualized by DSM-5.
Review of Conceptualization of ASD Severity
in Research Today: Methods
Search Procedures
Electronic database searches were independently con-
ducted using PubMed and PsychINFO. Search terms rela-
ted to: (1) autism diagnosis (autism OR autistic disorder
OR autism spectrum disorder OR PDD-NOS OR pervasive
developmental disorder not otherwise specified OR autism
spectrum OR Asperger* OR Asperger syndrome), AND (2)
severity (severity) were used to identify relevant studies.
Additionally, the following limits were used: (a) peer-re-
viewed journals, (b) academic journal, (c) English,
(d) published between 2000 and December 2014, and
(e) dissertations were excluded. To be included in the
review, each article had to meet the following inclusion
criteria: (a) participants or individuals described in the
paper must include at least one child, adolescent, or adult
with a diagnosis of autism spectrum disorder, pervasive
developmental disorder (PDD)—not otherwise specified
(NOS), Asperger syndrome, or autistic disorder, (b) the
article must evaluate, quantify, or measure a specific
operationalization of autism severity either as the direct
aim of the study or in relationship to another/other vari-
able(s) of interest.
Results
The initial search yielded 104 results in PubMed and 74
results in PsychINFO. Potential articles were identified for
inclusion by the first author’s review of the title and
abstract of each article. Papers from PubMed were first
reviewed from which 71 studies were identified that met
inclusion criteria. Subsequently, a review of search results
from PsychINFO identified 20 additional studies for
inclusion that were not previously identified in PubMed for
a total of 91 studies (see Table 1 for a list of the 91 studies
and the measure(s) used to operationalize autism severity).
Results of this systematic review indicate that there is
considerable variability in the conceptualization of autism
severity in relevant past research both in type of measure
used and number of measures used. First, studies were
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examined regarding number of measures used to opera-
tionalize autism severity within the study. A significant
majority of the papers (n = 72) reviewed used only one
measure as a proxy for autism severity, although several
studies used two (n = 14) or three (n = 4), and one study
used four measures to stratify participants based on ‘‘aut-
ism severity’’.
With regard to the specific measure chosen, in the 91
studies reviewed, 27 (6 classified as ‘‘Other’’; see Table 2
for a breakdown of this category) different measures or
metrics were used to operationalize autism severity (See
Table 1 for frequency counts for number of uses across the
91 identified severity studies for each metric of autism
severity). This variability in measures selected by
researchers to make severity determinations makes it likely
that individuals classified at a given level of severity in one
study may be classified as a different severity level in
another study if a different severity metric were used.
In addition to variability in the specific measure chosen
by researchers to operationalize autism severity, there was
also notable variability in the type of measure or metric
chosen. The majority of measures selected as indicators of
autism severity were diagnostic measures (e.g. ADOS) or
measures quantifying the ASD symptom profile [e.g.,
Social Responsiveness Scale (SRS)]. Screening measures
and behavioral questionnaires [e.g., Child Behavior Check-
list (CBCL)] were also frequently used as metrics of autism
severity. Less frequently used were cognitive measures,
adaptive behavior measures, and indicators of global
functioning (See Table 3 for categorization of each mea-
sure as diagnostic, screening, behavioral, symptom profile,
global functioning, cognitive, or adaptive).
Overall, results of this review indicate that the ADOS,
ADI-R, Child Autism Rating Scale (CARS), and SRS are
overwhelmingly the primary measures used in research as a
means by which to assign severity ratings to individuals
with ASD for research purposes. The ADOS, ADI-R, and
CARS are considered diagnostic measures that measure
core symptoms of ASD and the SRS is a symptom specific
measure assessing social communication deficits and social
functioning in individuals with ASD and is commonly
included in ASD diagnostic and assessment batteries.
Essentially, these four measures all assess core deficits of
ASD and do not assess functional skills or limitations,
language level, cognitive functioning, behavior problems,
or comorbid psychopathology or health conditions. Thus,
when used to make a severity determination, these mea-
sures are solely providing an indicator of severity of ASD
symptomology.
This conceptualization of ‘‘autism severity’’ in relevant
past research as severity of core ASD symptomology, is
markedly disparate from the conceptualization put forth in
DSM-5 in which severity determination is based on level of
 Table 1 Operationalization of severity for 91 identified severity studies
First ABC ADI- AD ASD- ASD- ASD- ASQ ATEC AQ BIS- CARS CB- CGI CSI- GA- IQ PDD- RBS- SCQ SRS VABS YBO- Other
Author, Year (R) OS BPC DA DC CUIT CL 4 RS- BI R CS
2

Adams et al. (2009) X X X X

Adams et al. (2011) X
Adams et al. (2011) X X X
Adams et al. (2013) X X X
Adams et al. (2014) X
Al-Ayadhi and X
Mostafa (2011)
Alabdali et al. (2014) X X
Baghdadli et al. X
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(2003)
Bavin et al. (2014) X
Baxter et al. (2007) X X
Ben-Itzchak and X
Zachor (2007)
Benson (2006) X
Beurkens et al. X
(2013)
Blaurock-Bush et al. X
(2012)
Brandwein et al. X
(2015)
Chang et al. (2013) X
Cohen et al. (2003a, X X X
b)
Cohen et al. (2011) X
Coutanche et al. X
(2011)
Davis et al. (2014) X
Dereu et al. (2012) X
Dickerson et al. X X
(2014)
Doyle-Thomas et al. X X
(2013)
Dudova and X
Hrdlicka (2013)
Eussen et al. (2013) X
Eussen et al. (2015) X
Gadow et al. (2010) X
Geier et al. (2009a) X
Geier et al. (2009b) X
Geier et al. (2012) X
Geier et al. (2014) X
2003

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 Table 1 continued
2004

First ABC ADI- AD ASD- ASD- ASD- ASQ ATEC AQ BIS- CARS CB- CGI CSI- GA- IQ PDD- RBS- SCQ SRS VABS YBO- Other
Author, Year (R) OS BPC DA DC CUIT CL 4 RS-2 BI R CS

123
Gibbard et al. (2013) X
Goldin et al. (2014) X
Gotham et al. X
(2012a, b)
Hamza et al. (2013) X
Heine et al. (2006) X
Hilton et al. (2007) X
Hilton et al. (2010) X
Hock and Ahmedani X
(2012)
Hollander et al. X X
(2012)
Hrdlička et al. X
(2004)
Ingersoll and X
Hambrick (2011)
Ismail et al. (2010) X
Jang et al. (2011) X X
Jiao et al. (2012) X
Joseph and Tager- X
Flusberg (2004)
Kanneet al. (2009a, X
b)
Keown et al. (2013) X
Kern et al. (2011) X
Khakzad et al. X
(2012)
Kjellmer et al. X
(2012)
Konstantareas and X
Papageorgiou
(2006)
Lin et al. (2011a, b) X
MacDonald et al. X
(2014)
Matson and Rivet X
(2008)
Matson et al. (2009) X
Matson et al. (2010) X
McStay et al. (2014) X
Meresse et al. (2005) X
Mostafa and Al- X
Ayadhi (2011)
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 Table 1 continued
First ABC ADI- AD ASD- ASD- ASD- ASQ ATEC AQ BIS- CARS CB- CGI CSI- GA- IQ PDD- RBS- SCQ SRS VABS YBO- Other
Author, Year (R) OS BPC DA DC CUIT CL 4 RS-2 BI R CS

Mostafa and Al- X

Ayadhi (2012)
Movas and Paneth, X X
(2012)
Nagar et al. (2012) X X
Parks et al. (2009) X
Poustka et al. (2012) X X
Pry et al. (2004) X
Rao and Landa X
(2014)
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Ring et al. (2008) X

Robinson et al. X
(2014)
Russo et al. (2012) X
Russo et al. 2014 X
Russo (2014a, b) X
Schumann et al. X X
(2009a, b)
South et al. (2011) X
Spiker et al. (2002) X X
Sprenger et al. X X X
(2013)
Thurm et al. (2015) X
Travers et al. (2013a, X X
b)
Tudor et al. (2012) X
Tureck et al. (2015) X
Uddin et al. (2013) X
Venker et al. (2014a, X
b)
Wallace et al. (2008) X X
Weil and Inglehartt X
(2012a, b)
Wells et al. (2009) X
White et al. (2015) X
Williams and Gray X X
(2013)
Wisessathorn et al. X
(2013)
Wood et al. (2014) X
Zachor et al. 2010 X
Zachor et al. (2010) X
Total 2 12 24 1 1 3 1 5 1 3 20 1 1 1 1 5 5 1 2 12 3 1 10
2005

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Table 2 Breakdown of measures classified as ‘‘other’’ Review of Measures for the Assessment of Severity
Measure Times used in ASD

Parent perceived severity 1 The assessment of ASD severity will require a comprehen-
Researcher developed questionnaire 1 sive battery of measures designed to capture a more holistic
Severity of autism scale 3 picture of an individual’s level of functioning. A compre-
Pfeiffer questionnaire 3 hensive ASD evaluation encompasses a thorough assess-
DSM-IV-TR classification 1 ment of multiple domains across multiple informants and
Structured observation 1 typically includes diagnostic measures (measures that assess
core deficits associated with ASD in both social communi-
cation and restricted/repetitive behavior (RRB) and symp-
toms associated ASD diagnostic criteria), symptom specific
needed support, which is impacted not only by core ASD measures (measures focused in greater detail on description
symptomology, but also cognitive, language, behavioral, of either social/communication deficits or RRB symptoms),
and adaptive functioning, as well as characteristics of the adaptive behavior measures (measures assessing capacity
environment. It is not clear how individuals with mixed for personal and social self-sufficiency and functional skills)
levels of impairment across cognitive, adaptive, and ASD in addition to cognitive and language assessment. Although
symptom-specific domains will be classified in terms of uncommon in current ASD assessment practice, measures of
DSM-5 levels of support using existing measures used to support needs (assessment of types and intensity of supports
classify individuals with ASD on the basis of severity an individual requires in personal, community, and social
(Weitlauf et al. 2014). Thus, it is of concern that with the activities) should be considered an essential component of
transition to DSM-5 criteria, the existing disparity between comprehensive ASD assessment given the DSM-5 severity
current research practices for determining symptom metric’s emphasis on needed supports.
severity and clinical operationalization of the same will The review of literature regarding practices in the
only worsen (Weitlauf et al. 2014). assessment of ASD severity in recent research identified

Table 3 Categorization of each measure by intended use

Measure Abbreviation Purpose

Autism behavior checklist ABC ASD screening

Autism diagnostic interview, revised ADI-R ASD diagnostic
Autism diagnostic observation schedule ADOS ASD diagnostic
Autism spectrum disorders- behavior problems for children ASD-BPC Behavior
Autism spectrum disorders- diagnosis for adults ASD-DA ASD diagnostic
Autism spectrum disorders- diagnosis for children ASD-DC ASD diagnostic
Autism screening questionnaire ASQ ASD screening
Autism treatment evaluation checklist ATEC ASD symptom profile
Autism spectrum quotient AQ ASD symptom profile
Baby and infant screen for children with autism traits BISCUIT ASD screening
Child autism rating scale, second edition CARS-2 ASD diagnostic
Child behavior checklist CBCL Behavior
Clinical global impression CGI Global severity
Child symptom inventory- 4 CSI-4 Behavior
Gilliam autism rating scale, second edition GARS-2 ASD diagnostic
Intelligence (measured by any IQ test) IQ Cognitive
PDD behavior inventory PDD-BI Behavior
Repetitive behavior scale-revised RBS-R ASD symptom profile- repetitive behavior
Social communication questionnaire SCQ ASD screening
Social responsiveness scale SRS ASD symptom profile- social skills
Vineland adaptive behavior scale VABS Adaptive behavior
Yale brown obsessive compulsive scales YBOCS ASD symptom profile- repetitive behavior

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the ADOS, ADI-R, CARS, and SRS as measures most
frequently used. The ADOS and CARS were selected as
representative diagnostic measures to be reviewed regard-
ing their use in assessment of ASD severity. Although
likely of utility for informing autism severity determina-
tion, the ADI-R was not reviewed as it is frequently used in
conjunction with the ADOS. With regards to symptom
specific measures, the SRS and the Repetitive Behavior
Scale, Revised (RBS-R), were chosen for review. The
RBS-R is one of the few established measures of repetitive
behavior and although it was not used nearly as frequently
as the SRS in the literature, because the severity of social
communication and restricted/repetitive behaviors and
interests are to be rated separately according to DSM-5, we
felt it was critical to review this symptom specific measure.
Although not identified as frequently used measures by
which to stratify individuals for research purposes on the
basis of severity based on the current review of literature, a
measure of adaptive behavior frequently used in ASD
research, the Vineland Adaptive Behavior Scale, second
edition (Vineland II), and two supports-intensity measures,
the Supports Intensity Scale (SIS) and the Instrument for
the Classification and Assessment of Support Needs (I-
CAN) were reviewed. The two measures of support needs
were reviewed because of their pertinence as the only
direct measures of intensity of needed supports.
Review of Psychometric and Validity Evidence
by Measure
Diagnostic Measures
Autism Diagnostic Observation Schedule, 2nd edition
(ADOS-2; Lord et al. 2012)
The ADOS-2 is clinician-administered, play-based, semi-
structured, direct assessment of core deficits in social
communication and restricted/repetitive behaviors and
interests associated with ASD as well as general social
interaction and play behaviors. Based on the current sys-
tematic review of the literature, the ADOS-2 was the
measure in the most frequent use for determination of
‘‘autism severity’’ for research purposes with 24 of the 91
identified studies using the ADOS or ADOS-2 for this
purpose. The ADOS -2 was used for severity determination
across a wide variety of disciplines and was included in
studies examining psychological, linguistic, motor, and
biomedical phenomena.
Factor analytics support a two-factor model of ADOS-2
scores, which is consistent with the two dimensions of
symptom severity in DSM-5, Social Communication and
Restricted/Repetitive Interests and Behaviors. Modules
2007
generate scores in these domains (SA and RRB) which
logistic regression has demonstrated have predictive
validity (Lord et al. 2012). Furthermore, ADOS compar-
ison scores (CS) were specifically developed as a severity
metric of core ASD symptom severity relative to the
individual’s language level and age (Gotham et al. 2009).
Overall, the review of literature indicated that the ADOS-2
is widely accepted across disciplines as a metric of ASD
severity and is in wide use in current research for this
purpose. The existing validity evidence supporting the
proposed uses of the ADOS-2 is applicable to the new
proposed use and supports its use to inform clinical deci-
sion making in the assignment of a level of support needs
for both Social Communication and RRB symptoms.
Child Autism Rating Scale, 2nd edition (CARS-2; Schopler
et al. 2010)
The CARS-2 is a rating scale completed by professionals
with information gathered from their own observations
made during formal assessment sessions using other
instruments and from general observation. The CARS-2 is
designed to identify those behaviors that an examinee may
be exhibiting that are characteristic of autism to help for-
mulate diagnostic hypotheses (Schopler et al. 2010). Based
on the current systematic review of the literature, the
CARS-2 was identified as a measure in frequent use for
determination of ‘‘autism severity’’ for research purposes
with 20 of the 91 identified studies using the CARS-2 for
this purpose making this measure second only to the ADOS
in its popularity for this use. The CARS-2 is likely in such
wide use for severity determination because it is a clini-
cian-based rating scale that is quick to complete and the
total score derived from completing the scale is associated
with a convenient ‘‘severity’’ metric categorizing total
scores as mild, moderate, or severe.
The CARS-2 is a diagnostic screening instrument that
provides a score indicating the extent to which an indi-
vidual displays traits characteristic of an ASD presentation
(Schopler et al. 2010). It is based on unstructured obser-
vations which may pose a threat to reliability and validity
of obtained scores for use in assessment of needed supports
as there is no control over the level of naturalistic envi-
ronmental supports provided in the CARS-2 assessment
context which can influence the level of functional
impairment the individual displays. Additionally, the factor
structure (two factors: communication and sensory issues,
and emotional issues) of the CARS-2 is not consistent with
the two domains being rated for severity in DSM-5 (Social
Communication and Restricted/Repetitive Behaviors and
Interests), which decreases validity of use of CARS-2
scores to inform severity rating according to DSM-5 defi-
nitions. Overall, existing validity evidence supporting the
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proposed use and interpretation of CARS-2 scores does not
seem to support the new proposed use of assessment of
intensity of support needs to provide a metric of severity of
specific symptom classes of ASD.
Symptom-Specific Measures
Social Responsiveness Scale, 2nd Edition (SRS-2;
Constantino and Gruber 2012)
The SRS-2 is a rating scale for individuals 2.5 years and
older measuring social, communication, and repetitive/
stereotypic behaviors associated with ASD intended to be
used for screening of a child at risk for ASD, delineating
social characteristics of children with ASD, differential
diagnosis of psychiatric concerns, generating behavioral
treatment goals, targeting areas for intervention, and mon-
itoring intervention effectiveness across time (Constantino
and Gruber 2012). Based on the current systematic review
of the literature, the SRS-2 was identified as a measure in
occasional use for determination of ‘‘autism severity’’ for
research purposes with 12 of the 91 identified studies using
the SRS-2 for this purpose. The SRS-2 is currently being
used as a metric for ASD severity in research almost
exclusively in psychological or non-biomedical research.
Among intended score uses indicated in the SRS-2
manual are: delineation of social characteristics of children
with ASD, generation of behavioral treatment goals, and
development of target areas for intervention (Constantino
and Gruber 2012). Of the 5 subscales measured in the SRS-
2, the Social Communication and Restricted/Repetitive
Behaviors subscales are most relevant to the new proposed
use. The SRS-2 manual indicates subscale scores are
intended for treatment planning which is a reasonable
proxy for support planning thus the validity evidence
supporting established uses of these scores seems to sup-
port the new proposed use. Furthermore, the 5 subscales
can be summed to create two DSM-5 scales, Social Com-
munication and RRB which is a significant strength of this
instrument when considering its utility for the new pro-
posed use as it not only provides an assessment of Social
Communication and RRB separately, but also provides a
metric that is consistent with conceptualization of these
symptom categories according to DSM-5 (Constantino and
Gruber 2012). An additional strength is that the SRS-2
allows for the assessment of a range of problem behaviors
from subclinical levels to those with greater severity, thus
it may be sensitive to social communication problems in
more mild cases of ASD. The SRS is in wide use as a
measure of ASD symptom severity and appears to be
particularly valid in its assessment of severity of social
impairment in individuals with ASD (Constantino and
Gruber 2012). Overall, existing validity evidence
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supporting the proposed uses of the SRS-2 is applicable to
the new proposed use and supports the use of SRS-2 scores
to inform clinical decision making in the assignment of a
level of support needs for Social Communication and to a
lesser extent RRB symptoms.
Repetitive Behavior Scale- Revised (RBS-R; Bodfish et al.
1999)
The RBS-R is an informant-based rating scale intended to
assess a variety of restricted and repetitive behaviors and
interests observed in ASD. Based on the current systematic
review of the literature, the RBS-R was used more as a
measure of outcome and less frequently used for the
determination of ‘‘autism severity’’ with 1 of the 91 iden-
tified studies using the RBS-R for this purpose. This is
likely at least in part due to the heavy emphasis in many of
the identified papers placed on Social Communication
symptoms if overall ASD severity was not the focus. The
RBS-R was used as a severity metric of strictly RRB
symptoms of ASD in a study examining the relationship
between postural stability and symptom severity in ASD
(Travers et al. 2013a, b).
The RBS-R was developed specifically to assess
restricted/repetitive interests and behaviors in individuals
with ASD, which is a significant strength of this instrument.
The RBS-R rates specific behaviors on basis of occurrence
and severity (Bodfish et al. 1999). Evidence regarding
factor structure of the RBS-R is conflicting and presents
concerns regarding use and interpretation of subscale
scores. The RBS-R was developed in part based on specific
feedback from parents and clinicians surrounding more
complex RRBs observed in individuals with ASD which
supports ‘‘face validity’’ of the included items, however,
this does not mitigate concerns regarding factor structure of
the instrument. The RBS-R Total Score was correlated
moderately with a global severity score supporting the Total
Score’s relationship to RRB severity (Bodfish et al. 1999).
Validity evidence supporting the current proposed uses of
the RBS-R subscales is conflicting, although, the RBS-R
Total Score may be of utility. Overall, validity evidence
supports the RBS-R’s utility for assessment of DSM-5
severity of RRB although further research regarding the
factor structure of this instrument would be useful.
Adaptive Behavior
Vineland Adaptive Behavior Scale, 2nd edition (Sparrow
et al. 2005)
The Vineland II is a norm-referenced measure of adaptive
behavior, defined as ‘‘the performance of daily activities
required for personal and social sufficiency’’ for
J Autism Dev Disord (2016) 46:2000–2016
individuals birth-90 years (Sparrow et al. 2005). Each
version of the Vineland II measures the same four broad
domains of functioning: Communication, Daily Living
Skills, Socialization, and Motor Skills. Items are rated
based on the extent to which the individual performs the
behaviors without assistance or reminder. Of the 91 iden-
tified studies, 3 studies used the Vineland II as an opera-
tionalization of autism severity. Two studies that were
biomedical in nature used the Vineland II in conjunction
with other measures, the ADI-R in one study (Schumann
et al. 2009a, b) and IQ in another (Cohen et al. 2003a, b) as
a metric of ASD severity. One study, also biomedical in
nature, used the Vineland II in exclusion as a means by
which to stratify individuals with ASD on the basis of
severity (Weil and Inglehart 2012a, b).
A major strength of the Vineland II is that, as a measure
of adaptive behavior, it directly measures functional
impairment in an individual’s ability to perform daily
activities (Sparrow et al. 2005). Understanding of an
individual’s level of impairment in performing tasks of
daily life substantially informs determination of how much
support that individual may need; thus the intended use and
interpretation of Vineland II scores is capable of directly
informing clinical judgment regarding level of needed
supports for both Social Communication and RRB. Indi-
viduals with ASD were included in the Vineland II stan-
dardization sample although as a norm referenced tool, this
measure was not developed specifically for use in indi-
viduals with ASD (Sparrow et al. 2005). However, the
Vineland II is in frequent use in ASD diagnostic assess-
ment. Reliability of the composite score is stronger than
subdomain reliability, however, the Socialization subdo-
mains, which would be of the greatest utility for assessment
of severity for the DSM-5 Social Communication domain,
demonstrated the highest subdomain reliability of the scale.
Another strength of the Vineland II is that it identifies
patterns of behavior in typical individuals and individuals
with more mild levels of impairment which means that it
will likely be sensitive to more subtle social impairment
which is of critical importance for the assessment of
severity (Sparrow et al. 2005). Although repetitive behav-
iors are not factored into the Vineland II composite score,
the composite score may also be of importance in deter-
mining the symptom severity for Social Communication
and RRB symptoms, as rigidities and social impairment
will likely impact functioning in a general way across all
domains assessed on the Vineland II. Therefore, knowing
‘‘general’’ functional impairment should indirectly inform
ratings on both severity scales. Overall, validity evidence
supporting the current interpretation and use of Vineland II
scores justifies composite and domain score use to broadly
inform overall severity of both Social Communication and
RRB and supports the cautious use of survey form and use
2009
of interview form subdomain scores to more directly
inform Social Communication severity as conceptualized
in DSM-5.
Supports Measures
Supports Intensity Scale (SIS; Thompson et al. 2004)
The SIS was designed to measure the level of practical
supports required by people with developmental disabili-
ties (DD) to lead independent and quality lives. The SIS is
a semi-structured interview intended to be completed by
1-3 informants who know the individual well (Thompson
et al. 2004). More specifically, it is a planning tool intended
to assist agencies in developing Individualized Service
Plans for individuals with ID or other developmental
delays. The first section of the SIS contains 49 life activ-
ities grouped into the following subscales: Home Living
Activities, Community Living Activities, Lifelong Learn-
ing Activities, Employment Activities, Health and Safety
Activities, and Social Activities. Each activity is rated
based on the frequency of support, the daily support time,
and the type of support required for the individual to
complete that activity on a scale ranging from 0 (no sup-
port) to 4 (high levels of support; Thompson et al. 2004).
Someone who needs support every time he does an activity
would have a high frequency number (4) but if that support
is low in intensity (e.g. monitoring) it would receive a low
‘‘type of support number’’ (1). Each subscale has a nor-
malized standard score with higher scores indicating more
need for support (Thompson et al. 2004).
Based on the current systematic review of the literature,
the SIS was not used as a measure of ‘‘autism severity’’ in
any of the 91 identified studies. The SIS is a direct measure
of intensity of needed supports designed for use in adults
with DD (Thompson et al. 2004). The SIS assesses life
activities and rates the frequency, duration, and type of
support. This is a significant strength of this measure as
unlike all other measures discussed (excluding the I-CAN),
the SIS directly assesses support needs, which is the metric
used to determine severity in the DSM-5 ASD diagnostic
criteria. The SIS was field tested in individuals with ID and
other developmental disabilities with 6 % of the norming
sample meeting diagnostic criteria for ASD. Thus,
although this measure was not developed exclusively for
use in individuals with ASD, individuals with ASD were
included in the norming sample and the SIS has demon-
strated utility in service planning in this population
(Thompson et al. 2004). Although there is no direct validity
evidence for use of SIS scores in the context of diagnosis or
severity assessment, it is one of very few assessments that
directly measures, rather than by proxy, intensity of needed
supports. Validity evidence supporting SIS score use to
123
2010
determine intensity of needed support is sufficient to justify
use of this instrument to inform clinical judgment regard-
ing intensity of supports needed in the domains of Social
Communication and RRB in the context of provision of a
DSM-5 ASD diagnosis.
Instrument for the Classification and Assessment
of Support Needs (I-CAN; Arnold et al. 2014)
The I-CAN is a questionnaire designed to assess support
needs for both current and future planning and resource
allocation for people with disabilities including people with
mental health diagnoses (Llewellyn et al. 2005). The
I-CAN is administered either via computer or paper and
pencil to informants who know the individual well and is
appropriate for assessing support needs for individuals ages
16 years and older. The I-CAN assesses the following
domains: Physical Health, Mental and Emotional Health,
Behavior of Concern, General Tasks, Communication,
Self-Care, Mobility, Relationships, Lifelong Learning, and
Community (Lewellyn et al. 2005). Each item within a
given domain is rated according to the frequency and level
of support that is or would be required for the service
recipient to complete that activity. Scores indicating sup-
port intensity are provided for each domain. Additionally,
change in support intensity is provided in score reports in
addition to graphical representations of variability in sup-
port needs across domains (Lewellyn et al. 2005). Based on
the current systematic review of the literature, the I-CAN
was not used as a measure of ‘‘autism severity’’ in any of
the 91 identified studies.
The intended use of the I-CAN is to assess support
needs, to inform environment and service planning, and to
guide support delivery for persons with disabilities (Lle-
wellyn et al. 2005). Items within domains are rated based
on frequency and level of support needed. Particularly
relevant domains regarding the new proposed use may
include the Behavior of Concern and Relationships
domains. One concern regarding use of the I-CAN in the
context of diagnostic assessment for individuals with ASD
is that in the standardization sample of 5071 individuals,
only five individuals had an ASD diagnosis (Llewellyn
et al. 2005). Additionally, the I-CAN was not particularly
related to current support hours received by individuals
with disabilities, although, this could be explained in part
by scarcity of services. However, despite this possibility,
this lack of significance is still surprising. The I-CAN may
be most beneficial not to inform clinical judgment
regarding symptom severity, but to plan for services and
supports for individuals with ASD after diagnosis as this
use seems most in line with the current supported and
intended use of the instrument. Validity evidence for the
proposed score use and interpretation of the I-CAN
123
J Autism Dev Disord (2016) 46:2000–2016
supports the latter proposed use but not use for diagnostic
determination of DSM-5 severity ratings for individuals
with ASD.
Discussion
Historically, diagnostic categories (PDD-NOS, Asperger
syndrome, autistic disorder) and vernacular distinctions,
such as ‘‘high’’ versus ‘‘low’’ functioning, served as
informal proxies for autism severity and communicated
useful information in both research and practice regarding
an individual’s symptom profile and level of impairment
offering a starting point for sample characterization,
intervention planning, and prognostic determination. With
the transition to the dimensional view of psychiatric diag-
noses emphasized in the DSM-5 and the elimination of
PDD, diagnostic sub-categories in favor of a singular aut-
ism spectrum disorder diagnosis (ASD). ASD is now
conceptualized as a broad singular disorder with a range of
multi-faceted severity profiles. To facilitate communication
regarding prognosis, treatment and support planning, and
research, there is a need for greater diagnostic precision
than might be attainable through the provision of a broad
‘‘spectrum’’ diagnosis; this can be achieved through the
inclusion of diagnostic modifiers, particularly though
specification of symptom severity.
Previously, informal ‘‘severity’’ specification (high vs.
low functioning, PDD-NOS vs. Asperger syndrome vs.
autistic disorder, etc.) primarily focused on broad, overall
severity rather than severity of a single symptom class.
Even the initial ADOS CSS, a standardized ASD symptom
severity metric, is focused on broad ASD symptom severity
(Gotham et al. 2009). Providing a single, broad metric of
severity is inconsistent with research supporting the two-
factor structure of the DSM-5 (Mandy et al. 2012) sup-
porting two broad domains of impairment, Social Com-
munication and Restricted and Repetitive Interests.
Research findings support the current DSM-5 structure and
indicate that severity of impairment in each of these cate-
gories is relatively independent, likely following distinct
long-term prognostic trajectories (Frazier et al. 2012;
Mandy et al. 2012). Furthermore, use of a broad metric of
severity such as the ADOS-CSS is of limited utility given
the two-factor structure of ASD symptomology as, for
example, one child may have an ADOS-CSS of 10 indi-
cating the highest level of symptom severity but this rating
may be nearly entirely driven by high severity of social
communication deficits whereas another child may receive
an ADOS-CSS of 10 but this rating of high symptom
severity may be accounted for almost entirely by high
levels of restricted, repetitive interests and behaviors (Hus
et al. 2014). These two children although rated equivalently
J Autism Dev Disord (2016) 46:2000–2016
on the ADOS-CSS, would likely require very different
profile and intensity of supports and may differ in their
prognosis. The level of specification afforded by provision
of severity ratings for Social Communication and RRB
separately will facilitate communication among researchers
and clinicians when determining severity, planning treat-
ment, and evaluating prognosis both holistically and
specifically for each symptom domain.
Severity determination in the DSM-5, made on the basis
of ‘‘intensity of support needs’’ for both social communi-
cation and restricted/repetitive behaviors respectively rep-
resents a major paradigm shift from a focus on level of
impairment based on amount of ASD symptomology or
level of intellectual functioning (APA 2013). This para-
digm shift in the conceptualization of ASD severity must
be reflected in the manner in which the construct is mea-
sured. When the scores obtained on a standardized measure
are considered for a use other than the established and
demonstrated intent, a critical step in determining the
suitability of a given assessment tool for the new proposed
use is an evaluation of the validity evidence supporting the
proposed score use for this new use and interpretation
(AERA et al. 2014).
Based on a brief review of psychometric properties of
several measures commonly used in the diagnosis and
assessment of ASD as well as two measures of supports
intensity, the authors recommend a combination of ADOS-
II, SRS-2, SIS, the Vineland II, and the RBS as measures
that may be helpful in informing clinical judgment in
conjunction with other sources of information in deter-
mining the severity of social communication and restricted/
repetitive behaviors symptoms according to the DSM-5
severity metric. More specifically, the ADOS-II, SIS, and
Vineland II will be useful in informing overall severity
determination for both social communication and restricted
and repetitive interests and behaviors. The ADOS-II, SRS-
2, and subdomains of the Vineland II will be useful in
severity determination of social communication symptoms
and the ADOS-II and the RBS will be useful in severity
determination of restricted and repetitive behaviors. Fur-
ther validity studies are needed for all reviewed instru-
ments to determine the extent to which the scores of these
measures can be used to determine symptom severity based
on intensity of needed supports. Additionally, there are
measures not reviewed in this paper that may demonstrate
utility in severity determination and warrant further study.
The ADOS-2 is a measure of particular usefulness in
informing severity determination of social communication
and restricted and repetitive interests and behavior symp-
toms separately, first, because it is considered by many as
the ‘‘gold-standard’’ measure for the diagnosis of ASD and
thus is already included in most diagnostic batteries. Sec-
ondly, the newly standardized Social Affect and Restricted
2011
and Repetitive Behaviors Comparison Scores (SA-CSS and
RRB-CSS respectively) provide a useful metric of autism
symptom severity that, unlike the broad ASD-CSS, is
consistent with the DSM-5 severity rating system (Hus
et al. 2014). The SA-CSS and RRB-CSS have the potential
to play a critical role in clinical specification of ASD
severity as one of the first measures of ASD symptom
severity developed to be consistent with DSM-5 structure.
Further validity studies are needed examining the extent to
which the SA-CSS and the RRB-CSS scores can be used to
inform symptom severity based on intensity of needed
supports in a diagnostic context.
The DSM-5 relies heavily on ‘‘Clinical Judgment’’ in
making the severity determination and does not explicitly
mention the use of standardized measures for determining
severity of Social Communication or Restricted and
Repetitive Behavior deficits. Employing standardized
measures to inform ‘‘Clinical Judgment’’ in making
severity level determinations has the potential to increase
consistency across professionals and settings, which has
positive implications for both clinical practice and
research. Although standardized measurement of autism
severity was the focus of this paper, such measurement by
no means offers a complete representation of an individ-
ual’s symptom severity as conceptualized by DSM-5.
Rather, the measures reviewed should be used to inform
clinical decision-making when determining severity levels
for social communication and restricted and repetitive
behaviors respectively. Such determination should be made
with careful consideration of the multiple environmental
contexts within which the individual functions and with
information gathered from multiple informants, sources of
information, and from direct clinical observations of the
individual (Hus et al. 2014).
The DSM-5 focus on needed supports emphasizes the
critical impact of person-environment interaction rather
than assuming that the only driver of intensity of support
need is the simple measurement of the levels of within-
person deficits. This is of critical importance for individ-
uals with ASD who are likely differentially affected by
environmental context and are as a result likely to manifest
varying levels of social communication and restricted
repetitive behavioral symptom severity across contexts,
possibly to the extent that different levels of supports may
be required across varying environments, and thus DSM-5
symptom severity determination could be context-specific
(Kanne et al. 2009a, b). As a diagnostic tool, the DSM-5 is
intended to be of utility to clinicians in diagnosis and
prognostic determination, as well as for the provision of
treatment recommendations. Severity determination on the
basis of needed supports can effectively inform treatment
planning and prognosis in a more encompassing manner
than a severity determination based solely on symptom
123
2012
profile. A severity determination bases on the intensity of
an individual’s support needs offers a more holistic picture
of an individual’s functioning taking into account variables
such as cognitive and adaptive functioning behavioral
problems, comorbidities, and variables related to context
and environment.
More research is needed to assess the clinical value of
the proposed DSM-5 severity levels of ASD. These studies
are needed to assess the predictive ability of these modi-
fiers to differentiate persons with ASD based on prognosis
and outcome, informing on course of treatment and inter-
ventions. Studies will also be needed regarding the use-
fulness of the new severity modifier as an indicator for
characterizing participants in a research study.
All of the reviewed standardized instruments need fur-
ther validity studies to inform uses on the extent to which
the scores of these measures can be used to inform on
symptom severity based on intensity of needed supports.
Future validity studies could include the following:
examination of the relationship between scores obtained on
each of the above mentioned measures and the probability
of being classified into a given support category (by clin-
ical judgment), examination of the association between
scores on the above mentioned measures and restrictive-
ness of residential or educational placement (e.g. general
classroom, general classroom with aid, resource room,
autism unit, autism unit with 1:1 aid, etc. which may serve
as a proxy criterion for ‘‘intensity of needed supports’’),
and demonstration of a relationship between the above
mentioned scales and hours of supports needed or received.
Conclusion
The diagnostic, symptom specific, and support intensity
measures reviewed herein are all in frequent use in practice
and are regarded as valid for their respective intended use
and score interpretation. However, none of these instru-
ments have been examined in terms of their validity of use
or score interpretation for indicating a diagnostic severity
modifier that is based on both functional impairments in
specific ASD core symptomology and the resulting inten-
sity of supports needed. Thus, before scores from any of
these measures can be used to aid in the assessment of ASD
symptom severity as conceptualized by DSM-5, validity
evidence supporting the proposed uses of each instrument
must be established.
Thus, the new proposed use will require utilization of
(a) measure(s) that have evidence to support validity of the
following score uses: diagnosis, severity specification,
determining intensity of needed supports, determining the
impact of symptom severity on functioning, assessment of
social communication and restricted/repetitive behaviors
123
J Autism Dev Disord (2016) 46:2000–2016
and interests separately (as severity rating are assigned
independently for each domain), and support planning. The
validity evidence would necessarily need to be collected on
diverse samples of individuals with ASD. These measures
would need to demonstrate the capacity to detect varying
degrees of severity from mild to more marked expressions
of symptom presentation and would need to possess the
flexibility to take into account other impairments associ-
ated with an ASD diagnosis (e.g., ID, language delay,
psychopathology, etc.) that may also critically impact the
severity determination. It is apparent from our review of
the literature that no single standardized measure currently
available encompasses all of the above-mentioned proper-
ties. Thus, clinicians will likely need to rely upon a battery
of standardized measures and sources of information as
well as their clinical judgment to arrive at an ASD severity
determination. A combination of diagnostic, symptom
specific, adaptive behavior, and support intensity measures
will likely be effective in informing clinical judgment
regarding ASD symptom severity determination as con-
ceptualized by DSM-5. This paper offers one possible
combination of measures that may be useful in informing
‘‘Clinical Judgment’’ regarding ASD severity determina-
tion based on the DSM-5 conceptualization of autism
severity.
Author Contributions MHM & MJT conceived of the study;
MHM developed the design, conducted the literature review, analyses
and summarization of data, and wrote the draft and revisions of the
manuscript; MJT participated in the discussion of the results, and
participated in revisions of the drafts of the manuscript. Both authors
read and approved the final manuscript.
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