Journal of Autism and Developmental Disorders (2022) 52:4355–4374

https://doi.org/10.1007/s10803-021-05323-y

ORIGINAL PAPER

Evaluating the Use of Self‑reported Measures in Autistic Individuals

in the Context of Psychiatric Assessment: A Systematic Review
Soo Youn Kim1 · Luc Lecavalier1

Accepted: 2 October 2021 / Published online: 13 October 2021

© The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature 2021

Abstract
The current review examined the use of self-report measures in autistic individuals in the context of psychiatric assessments.
It focused on inter-rater agreement, internal consistency, test–retest reliability, and criterion validity with clinical diagnoses.
It also gathered information on constructs measured, the nature of the samples, and the quality of the studies. Thirty-six out
of 10,557 studies met inclusion criteria. We found that the majority of studies (1) targeted young people with average or
above average cognitive abilities, (2) measured anxiety symptoms, and (3) evaluated parent–child agreement. More studies
are needed on individuals with lower cognitive abilities, adults, and other constructs. Studies assessing criterion validity and
test–retest reliability are also needed.

Keywords Autism · ASD · Self-report · Psychometric properties · Instrument · Measure · Review

Introduction concerns regarding the accuracy of self-report measures in

The prevalence of autism diagnoses has increased dramati-
cally over the last 20 years (Baio et al., 2018), in part due
to the advent of the Diagnostic and Statistical Manual of
Mental Disorders (DSM-5; American Psychiatric Associa-
tion, 2013). The DSM–5 broadened the spectrum of indi-
viduals meeting criteria for an autism spectrum disorder
(ASD). A larger proportion of individuals newly diagnosed
with autism present with cognitive abilities in or above the
average range (Kim et al., 2014). A recent study reported
that intellectual disability (ID) occurs in 30% of cases (Baio
et al., 2018); historically the rate was closer to 70–80%
(Fombonne, 1999, 2003).
There has been a parallel increase in the use of self-
report measures. Self-report measures are used extensively
in the general population to assess psychiatric symptoms.
In many situations, self-report is the cornerstone of a psy-
chiatric diagnostic assessment (Kaufman et al., 1997;
Lecrubier et al., 1997; Reich, 2000; Silverman & Rabian,
1995). Historically, however, psychiatric assessments of
autistic individuals have relied on informants because of
* Luc Lecavalier
luc.lecavalier@osumc.edu
1
Nisonger Center, The Ohio State University, 1581 Dodd
Drive, Columbus, OH 43210, USA
autistic individuals, especially in describing internal states
(Berthoz & Hill, 2005). In support of this view, Stratis and
Lecavalier’s (2015) meta-analysis found modest correlations
between children and their parents for both externalized and
internalized problems. Mazefsky et al. (2011) suggested cau-
tion in interpreting self-reported psychiatric comorbidities.
In their study with 38 autistic adolescents without ID, the
Children’s Depression Inventory, Short Version (Kovacs,
1992), Conners-Wells Adolescent Self-Report Scale, Short
Edition (Conners et al., 1997), and Revised Children’s
Manifest Anxiety Scale (Reynolds & Richmond, 1978) all
had sensitivity less than 0.50 compared to the diagnosis
based on a semi-structured parent interview, the Autism
Comorbidity Interview-Present and Lifetime (Leyfer et al.,
2006). Gotham et al. (2015) reached similar conclusions in
another study examining the validity of self-report measures
of depression. In their sample of 50 verbally fluent autistic
adolescents without ID, they found that the Beck Depression
Inventory, 2nd Edition (Beck et al., 1996) and Adult Self
Report Depressive subscale (Achenbach & Rescorla, 2003)
were the best of the six measures used, though neither were
particularly sensitive to clinical diagnosis.
Studies in the past decade have shown that autistic indi-
viduals may be more capable of reporting their internal state
than previously understood. Some studies have provided evi-
dence that autistic adolescents without ID are able to report

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4356
their own quality of life as validly and reliably as the general
population (Sheldrick et al., 2012; Shipman et al., 2011).
Similarly, a study on self-reported personality traits in autis-
tic adults without ID reported satisfactory internal consist-
ency and concurrent validity with clinician ratings (Hes-
selmark et al., 2015). Finally, recent studies examining the
relationship between self-report and biological measures in
autistic individuals revealed promising results (Avery et al.,
2018; Keith et al., 2019; Rosen & Lerner, 2018; Sapey-Tri-
omphe et al., 2019). For instance, Keith et al. (2019) found a
significant positive correlation between self-reported anxiety
and autonomic arousal at rest, and self-reported auditory
sensitivity and autonomic reactivity during an aversive noise
task. Interestingly, these correlations were not significant for
parent-reports and the parents tended to report lower levels
of symptoms. In another study, Rosen and Lerner (2018)
found that greater self-reported social anxiety symptoms
were associated with an increased neural response to errors
measured by the error-related negativity in autistic youths.
Self-report measures are used increasingly in autism
research (Hong et al., 2016; Knüppel et al., 2018; Shipman
et al., 2011) and for diagnostic screening. The UK National
Institute for Health and Care Excellence (NICE) recom-
mended that adults who do not have a moderate or severe
learning disability should be referred to a comprehensive
assessment if scored above the threshold on the Autism-
Spectrum Quotient (Baron-Cohen et al., 2001) and (NICE,
2012). Other researchers have developed self-report instru-
ments specifically for autism (Hull et al., 2019; Rodgers
et al., 2016) and validated self-report instruments originally
used in the general population (Chan et al., 2019; Karlsson
et al., 2013; Park et al., 2019; Sterling et al., 2015).
Despite the increasing use of self-report measures in
autistic people, little is known about their psychometric
properties. The current review aimed to fill this gap and
examine how self-report measures have been used in autis-
tic individuals in the context of psychiatric assessments. A
goal of the review was to gain information on the constructs
measured, the nature of the samples under study, and the
quality of the studies. The review encompassed diverse met-
rics: inter-rater agreement, internal consistency, test–retest
reliability, and criterion validity with clinical diagnoses.
Methods
We conducted a literature review on PubMed and Psy-
cINFO, on December 9th, 2020, using the following search
key: (autis* OR Asperger* OR ASD OR PDD OR (per-
vasive developmental disorder)) AND (psychometric*
OR (internal consistency) OR reliability OR validity OR
inter-rater OR agreement OR concordance OR (screening
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Journal of Autism and Developmental Disorders (2022) 52:4355–4374
utility) OR (diagnostic utility)). All key words were
searched from the title or the abstract.
Inclusion Criteria
Inclusion criteria were: (a) Published in a peer-reviewed
academic journal in English (b) Empirical study that
included a quantitative analysis, (c) Participants included
autistic individuals, (d) Assessed the psychometric proper-
ties of the instrument as part of the study’s primary aims,
and (e) Use of at least one self-report measure to assess
psychiatric symptoms with data on one or more of the fol-
lowing: Inter-rater agreement between the autistic person
and another informant, internal consistency, test–retest
reliability, or criterion validity defined by diagnostic util-
ity using clinician diagnosis as a criterion.
We coded the following information from each study:
participants’ demographic information (including age,
gender, cognitive ability), construct measures, instru-
ment used, psychometric properties, study objective, and
results. The primary reviewer (SYK) screened the titles
and abstracts of articles. The primary reviewer and a
research assistant reviewed the full text independently to
ensure that studies met inclusion criteria.
Quality Ratings
We assessed study quality along three dimensions: (a)
participant characterization, (b) sample size, and (c) the
appropriateness of the instrument. Participant characteri-
zation consisted of verification of autism diagnosis and
specification of age and IQ. The quality ratings for each
parameter were categorized as either Low or High. A High
rating meant: autism diagnosis was verified with either at
least one validated diagnostic instrument for autism or a
comprehensive assessment by a trained clinician; age was
provided with appropriate descriptive statistics; IQ was
measured with a standardized instrument; the sample size
was larger than 25; and the instrument used had published
data on its reliability and validity (in the extant literature
or in the reviewed study). The sample size of 25 was deter-
mined as a minimum to ensure some robustness to results.
The quality rating was calculated by adding the number of
High ratings. Study quality was considered Strong when
all five of the parameters were rated as High. Study qual-
ity was considered Adequate if four out of five parameters
were rated as High. It was considered Weak if there were
three or less parameters rated as High.
Journal of Autism and Developmental Disorders (2022) 52:4355–4374
Pooled Effect Size
A pooled effect size was calculated if enough studies were
located assessing the same metric. For reliability coeffi-
cients, we used the most representative (i.e., total score coef-
ficient) or the highest Pearson’s r or intra-class correlation
(ICC) coefficient from each study and converted all other
statistics to Pearson’s r coefficient. The coefficient for each
study was converted to a z score using Fisher’s z transforma-
tion (Fisher, 1938) to obtain accurate weights for each study.
We used random-effects model with the Sidik-Jonkman esti-
mator to measure between-study heterogeneity.
Fig. 1  PRISMA flow chart
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Results
Figure 1 shows the study selection process. We identified
10,557 articles. After screening for titles and abstracts, we
reviewed the full text of 632 studies, and 36 studies met
inclusion criteria. The primary and secondary reviewer
agreed on inclusion for 98% (622/632) of the articles. Con-
sensus on the remaining ten articles was achieved after dis-
cussion. Table 1 lists summary information for the 36 studies
included in the current review.
Participants, and Constructs
Table 2 shows the participant characteristics and measured
constructs for each study. Sample sizes ranged from 14 to
881 (mean = 108, median = 60). Twenty-nine studies (81%)
included only 6–18-year-old children and adolescents, two
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 Table 1  Studies of psychometric properties of self-report measures in individuals with ASD
4358

Author (year) Participants Sample size Construct Self-report ­measureb Inter-rater Reliability Criterion Results
agreement validity
a
Age IQ Internal Test–retest

13
consistency reliability

Arnold et al. (2020) 34.5 (15.0), NR 346 Depression PHQ-9 v Internal consistency was
15–80 excellent for the total
score (α = 0.91), and
fair to good for two
proposed subdomains
(cognitive affective
α = 0.89; somatic
α = 0.79)
Bitsika et al. (2015) 11.1 (3.3), > 70 139 Anxiety 8 items on GAD in v Parents rated their son’s
6–18 CASI-4 generalized anxiety as
more severe than chil-
dren did themselves
(For total score, partial
eta square = .019; For
all subscales, partial
eta square = 0.113)
Bitsika and Sharpley 11.2 (3.3), 6–18 > 70 140 Anxiety CASI-4 v Parents rated their sons’
(2015) generalized anxiety
disorder and social
phobia symptoms
significantly higher
than the child (For all
subscales, partial eta
square = .108)
Bitsika and Sharpley 10.1 (2.7), 6–17 > 70 53 Anxiety 8 items on GAD in v Good inter-rater
(2020) CASI-4 agreement between
mothers and daughters
(r = 0.609)
Blakeley-Smith et al. 10.83 (1.7), VIQ 107 (16.3), 63 Anxiety SCARED v Poor to good parent–
(2012) 8–14 80–155; child agreement (total
NVIQ 106 (14.2), ICC = 0.52; subscales
75–134 ICC = 0.27–0.71)
Significant parent–child
difference on meeting
cutoff for separation
anxiety; 80.6% of the
children of which the
parents reported above
cutoff on separation
anxiety also reported
above cutoff
Burrows et al. (2018) 12.8 (2.4), 101.1 (14.4), 144 Anxiety SASC-R v Parent and youth reports
8–16 > 70 of anxiety did not dif-
fer (Cohen’s d = 0.06)
Journal of Autism and Developmental Disorders (2022) 52:4355–4374
 Table 1  (continued)
Author (year) Participants Sample size Construct Self-report ­measureb Inter-rater Reliability Criterion Results
agreement validity
Age IQa Internal Test–retest
consistency reliability

Cadman et al. (2015) ASD: 28.0 (9.1); 106.3 (15.3), > 70; 171; 54 Obsessive-Compul- OCI-R v v Excellent internal con-
ASD + OCD: 31.2 100.7 (15.4), sive Disorder (OCD) sistency (α = 0.92)
(11.4) > 70 A cut off OCI‐R total
score of 29 best
discriminated the two
groups (ASD + OCD
and ASD only; sensi-
tivity 69%, specificity
70%)
Carruthers et al. 12.9 (1.9), 10–16 > 70 48 Anxiety SCARED-71; SCAS v v v Excellent inter-
(2020) nal consistency
(SCARED-71,
α = 0.95; SCAS,
α = 0.93)
Poor-to-fair par-
ent–child agreement
(ICC = 0.38; 0.59)
Better criterion validity
when used lower
Journal of Autism and Developmental Disorders (2022) 52:4355–4374

cut-points than origi-

nally recommended
(SCARED alternative
cutoff 21: sensitiv-
ity 0.93, specificity
0.33 vs. original
cutoff 30: sensitivity
0.83, specificity 0.39,
SCAS-C alternative
cutoff 13: sensitivity
0.90, specificity 0.33
vs. original cutoff
33: sensitivity 0.57,
specificity 0.78) using
the criterion based on
DSM-IV CAPA
den Houting et al. 11.2 (0.6), NR 30 (n = 28 for parent– Anxiety ASC-ASD v Poor to fair parent–child
(2019) 10–12 child agreement) agreement (Separation
Anxiety, r = 0.44;
Uncertainty, r = 0.36;
Performance Anxiety,
r = 0.34; Anxious
Arousal, r = 0.37;
Total score, r = 0.54)

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 Table 1  (continued)
4360

Author (year) Participants Sample size Construct Self-report ­measureb Inter-rater Reliability Criterion Results
agreement validity
Age IQa Internal Test–retest

13
consistency reliability

Findon et al. (2016) 27.4 (12.3) 8% had ID based on 98 Psychiatric symptoms SDQ v v v v Fair parent–child agree-
self-report ment (r = 0.42)
Poor to good internal
consistency (α = 0.52–
0.81)
Fair to good test–retest
reliability (average
11.8 months apart;
r = 0.55–0.74)
Low criterion validity
using the criteria
based on clinical
interview or previous
diagnosis (SDQ
emotional problems
subscale sensitivity
0.55, Hyperactivity
subscale sensitivity
0.60)
Hallett et al. (2013) 13.5 (0.7) 88.1 (22.3), < 50: 142 Anxiety RCADS v Poor to fair parent–child
n = 15, 50–70: n = 10 agreement (total
ICC = 0.49; subscales
ICC = 0.27–0.49)
Hammond and Hoff- 13.9 (2.2), 12–18 91.2 (12.4) 14 Anxiety, Depression YI-4 v Good parent–child
man (2014) agreement on the YI-4
and ASI-4 (r = 0.61)
on depression, but not
on anxiety
Hoover and Romero 11 NR 20 Trauma Interactive Trauma v Good internal consist-
(2019) Scale (ITS) Pro- ency (α = 0.855)
totype
Kaat and Lecavalier 12.4 (2.3) 90.7, 46 Anxiety RCADS, MASC-2 v v Poor parent–child agree-
(2015) 56–127 ment (RCADS, total
ICC = 0.23, subscales
ICC = 0.08–0.30;
MASC-2, total
ICC = 0.23, subscales
ICC = 0.00–0.45)
Excellent internal
consistency (RCADS,
α = 0.92, 0.66–0.80;
MASC-2, α = 0.90,
0.55–0.80)
Journal of Autism and Developmental Disorders (2022) 52:4355–4374
 Table 1  (continued)
Author (year) Participants Sample size Construct Self-report ­measureb Inter-rater Reliability Criterion Results
agreement validity
Age IQa Internal Test–retest
consistency reliability

Kalvin et al. (2020) ASD + anxiety: 12.0 102.3 (20.6), > 70; 34; 18 Anxiety MASC-2 v Moderate parent–child
(1.7); ASD: 12.4 107.2 (18.0), > 70 agreement in the
(1.8) ASD + anxiety group
(r = 0.36) and the ASD
group (r = 0.53)
Parents rated anxiety
higher than children
in the ASD + Anxiety
group and children
rated anxiety higher
than parents in the
ASD and TD groups
Kalyva (2009) 14.3 (1.1) 98.9 (15.9) 56 Eating attitude EAT-26 v Excellent mother-
daughter agreement
(r = 0.96)
Less mothers reported
serious eating prob-
lems (above cut-off)
in comparison to their
Journal of Autism and Developmental Disorders (2022) 52:4355–4374

daughters
Karlsson et al. (2013) 18.7 (2.9) NR 57 Eating disturbances SWEAA v v Fair to excellent
internal consistency
(α = 0.76–0.92)
Fair to excellent
test–retest reliability
(about 1 month apart;
ICC = 0.508–0.967)
Keith et al. (2019) 14.2 (1.4), 109.9 (12.9), 84–133 26 Anxiety SCARED v Poor parent–child
12–16.7 agreement (r = 0.34).
Self-report was higher
than parent-report
Magiati et al. (2014) 12.8 (2.5) NR (Recruited from 38 Anxiety SCAS v Fair parent–child agree-
a school which ment (total ICC = 0.42,
admits students subscales ICC = 0.42–
with a Nonverbal IQ 0.78)
over 70) Poor parent–child agree-
ment on meeting the
cutoff (total Cohen’s
κ = 0.34, subscales
Cohen’s κ = 0.13–0.56)
May et al. (2015) 10.4 (1.6) Verbal IQ 100.7 (13.2); 44 Anxiety SCAS v Poor parent–child agree-
Performance IQ ment (total r = 0.247,
100.7 (15.3) subscales r = 0.106–
0.306)

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 Table 1  (continued)
4362

Author (year) Participants Sample size Construct Self-report ­measureb Inter-rater Reliability Criterion Results
agreement validity
Age IQa Internal Test–retest

13
consistency reliability

Mazefsky et al. (2011) 12.0 (2.0), 105.0 (17.0), 38 Depression, Anxiety, CDI-S, RCMAS, v v All four instruments had
10–17 71–144 Attention-Deficit/ CASS-S, SLOI-CV internal consistency
Hyperactivity Dis- comparable to litera-
order (ADHD), OCD ture (α = 0.75–0.90)
Compared to structured
interviews with
parents, the sensitivity
and specificity for
CDI-S, RCMAS, and
CASS-S were all sig-
nificantly lower in the
test sample (sensitivity
0.23–0.33; specific-
ity 0.45–0.55) than
reported in literature,
even when alternative
cutoffs were explored.
For the SLOI-CV, the
sensitivity was high
while positive predic-
tive value was low
Ooi et al. (2016) 11.2 (1.8), 9–16 VCI > 80, PRI > 90 70 Anxiety SCAS v Low to fair parent–child
agreement (total
ICC = 0.38, subscales
ICC = 0.13–0.54)
Children rated them-
selves significantly
higher on the total
and on most of the
subscales
Ozsivadjian et al. 13.0 (1.4), 11.8–15.6 94.9 (13.8), 73–122 30 Anxiety, Depression SCAS, CDI v Fair to good parent–child
(2014) agreement (SCAS
total score, ρ = 0.43,
ICC = 0.59; CDI
total score, ρ = 0.59,
ICC = 0.62)
Park et al. (2020) 23.4 (7.0), > 70 123 Anxiety, Depression, DASS-21 v Good to excellent
16–46 Stress internal consistency
(total score, α = 0.94;
Depression subscale,
α = 0.93; Anxiety sub-
scale, α = 0.84; Stress
subscale, α = 0.88)
Journal of Autism and Developmental Disorders (2022) 52:4355–4374
 Table 1  (continued)
Author (year) Participants Sample size Construct Self-report ­measureb Inter-rater Reliability Criterion Results
agreement validity
Age IQa Internal Test–retest
consistency reliability

Rodgers et al. (2016) 11.1 (2.1) NR 157 Anxiety ASC-ASD v v v Good parent–child
agreement (r = 0.68)
Excellent internal con-
sistency (α = 0.94)
Excellent test–retest reli-
ability (1 month apart,
ICC = 0.82)
Schiltz et al. (2017) 11.4 (2.2) 100.9 (13.7) 57 Anxiety MASC v Poor to good test–retest
reliability across
15-month period
(r = 0.34–0.65)
Schiltz et al. (2019) 13.4 (1.5), 11–16 101.7 (18.7), 63–144 197 Anxiety SASC v Fair parent–child agree-
ment (total r = 0.58,
subscales r = 0.34–
0.65)
Sharpley et al. (2015) 11.4 (1.8), 101.1 (14.0), 78–124 16 Anxiety 5-item anxiety scale of v Good correlations
8–14 the CASI-4 between the two days’
CASI anxiety self-rat-
Journal of Autism and Developmental Disorders (2022) 52:4355–4374

ings over the 8-months

period (r = 0.66)
Sharpley et al. (2019) 12.1 (2.8), 7–16 95.2 (10.8), 74–124 27 Anxiety 8 items on GAD in v Fair correlations between
CASI-4 the two days’ CASI
GAD self-ratings over
the 2.4-year period
(r = 0.42)
Soh et al. (2020) 14 (2.4), NR 91 Anxiety ASC-ASD v v v Fair to Excellent internal
9.1–18.7 consistency (Total
score, α = .92; sub-
scales α = 0.74–0.83)
Poor to good parent–
child agreement
(Total score, r = 0.63,
ICC = 0.63; subscales,
r = 0.43–0.62,
ICC = 0.39–0.63)
Sensitivity 0.76 and
specificity 0.59 when
used the cutoff of
20 suggested in the
literature. Sensitivity
0.71 and specific-
ity 0.79 when used
alternative cutoff of 27
when compared to the
MINI-KID

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 Table 1  (continued)
4364

Author (year) Participants Sample size Construct Self-report ­measureb Inter-rater Reliability Criterion Results
agreement validity
Age IQa Internal Test–retest

13
consistency reliability

Stern et al. (2014) 12.3 (2.8), 8–18 101.7 (17.7), > 70 119 Anxiety SCARED v v Poor to excellent internal
consistency (total
score, α = 0.92; sub-
scales, α = 0.62–0.84)
Sensitivity total score
0.52, subscales
0.37–0.67 and speci-
ficity total score 0.78,
subscales 0.40–0.80
when compared to the
ADIS-P
Storch et al. (2012) 10.3 (2.2), 7–17 > 70 85 Anxiety ADIS-C v v Poor parent–child
agreement (Cohen’s
κ = 0.07–0.36)
Poor to fair agreement
with the clinical
consensus determined
by ADIS-C/P (Cohen’s
κ = 0.11–0.45)
Uljarević et al. (2018) UK sample: 16.0 (1.3); NR 106; 45 Anxiety, Depression HADS v Good internal consist-
Australian sample: ency (α = 0.84) for
18.4 (2.6) HADS-Anxiety, poor
internal consistency
(α = 0.65) for HADS-
Depression scale
Van Steensel et al. 11.4, 7–18 > 70 115 Anxiety SCARED-71 v v v Poor to fair par-
(2013) ent–child agreement
(SCARED-71, mother,
r = 0.39; father,
r = 0.41)
Excellent internal
consistency (total,
α = 0.92)
Sensitivity was 0.81 for
SCARED-71 cutoffs
as having the same
ADIS-C anxiety
disorder
White et al. (2012) 14.6 (1.7), 12–17 97.1 (14.5), > 70 30 Anxiety MASC-C v v Poor to fair parent–child
agreement based on
MASC-C/P (Total
score, r = 0.358,
subscales, r = 0.258–
0.436)
Excellent internal con-
sistency (α = 0.92)
Journal of Autism and Developmental Disorders (2022) 52:4355–4374
 Journal of Autism and Developmental Disorders (2022) 52:4355–4374 4365

studies (6%) included only adults, and five studies (14%)

Multidimensional Anxiety Scale for Children-2, EAT-26 Eating Attitudes Test – 26, SWEAA Swedish Eating Assessment for Autism spectrum disorders, CDI-S Children’s Depression Inventory-
Anxiety Scale for Children-Revised, OCI-R Obsessive–Compulsive Inventory-Revised, SCAS The Spence Children’s Anxiety Scale, ASC-ASD Anxiety Scale for Children with Autism Spec-
NR not reported, PHQ-9 Patient Health Questionnaire-9, CASI-4 Child and Adolescent Symptom Inventory-4, SCARED -71 The Screen for Child Anxiety Related Disorder-71, SASC-R Social

sion, CDI Children’s Depression Inventory, DASS-21 Depression Anxiety Stress Scale-21, ADIS-C Anxiety Disorders Interview Schedule for Children, HADS Hospital Anxiety and Depression
Sample 2 reported sen-

trum Disorder, SDQ Strengths and Difficulties Questionnaire, RCADS Revised Child Anxiety and Depression Scale, YI-4 Youth Inventory–4, ITS Interactive Trauma Scale Prototype, MASC-2

Short version, RCMAS Revised Children’s Manifest Anxiety Scale, CASS-S Conners-Wells Adolescent Self-report Scale-Short edition, SLOI-CV Short Leyton Obsessional Inventory-Child Ver-
score, 0.63 using Total
sitivity 0.75 using IRT

0.67 using Total score

compared to a clinical
0.57 using IRT score,
score, and specificity
Using a cutoff derived
included both children and adults. Twenty-four studies

diagnosis based on
SCID-5 or MINI
(67%) exclusively included individuals with IQ above 70,

from Sample 1,
four studies (11%) included individuals with IQ < 70, and
eight studies (22%) did not report IQ.
Results

Anxiety was by far the most studied construct (n = 29,

81%), followed by depression (n = 7, 19%), eating distur-
Criterion

bances (n = 2, 6%), obsessive compulsive disorder (OCD)

validity

(n = 2, 6%), Attention-Deficit/Hyperactivity Disorder

v

(n = 2, 6%), trauma (n = 1, 3%), and broadband psychiatric

Test–retest

symptoms (n = 1, 3%). Except for one study that used a

reliability

clinician-administered structured interview (Storch et al.,

2012), all studies used rating scales.
consistency
Reliability

Internal

Psychometric Properties

Table 3 presents reliability coefficients and their descrip-

agreement
Inter-rater

tors for inter-rater agreement, internal consistency, and

test–retest reliability. Each coefficient was categorized
as poor, fair, good, or excellent using Cicchetti's criteria
Self-report ­measureb

(1994).
Inter-rater agreement, specifically parent–child agree-
ment, (n = 24, 67%) was the most studied psychometric
BDI-II

property. Among those 24 studies, only one calculated cli-

nician-child agreement (Storch et al., 2012). Fifteen studies
reported internal consistency (42%), nine studies reported
criterion validity measured against clinical diagnosis (24%),
and six reported test–retest reliability (17%).
Depression
Construct

More than half of the studies reported poor or fair

interrater agreement. Most of internal consistency coef-
ficient ranged from good to excellent, while test–retest
reliability varied from poor to excellent. Five out of nine
studies reported both sensitivity and specificity between
50 and 80% either using a conventional or an alternative
Sample size

cutoff.
881; 66

Pooled Effect Size

(12.9), > 70 for
Verbal IQ 103.7

Since the most studied topic was parent–child agreement of

Sample 2

anxiety symptoms (n = 21), the effect size of the correlation

coefficients was pooled. Most studies reported Pearson’s r
IQa

and ICC coefficients, but two studies conducted ANOVA,

Scale, BDI-II Beck Depression Inventory-II

one conducted a one-sample t-test, and one reported Cohen’s

Sample 1: 30.9 (7.1),

Sample 2: 24.1 (5.6),

κ. The pooled correlation for the parent–child agreement of

anxiety symptoms (n = 21) was r = 0.45 (p < 0.01), and the
Participants

I2 heterogeneity in this analysis was substantial (78%), sup-

18–45;

18–46

porting the use of a random-effects model.

Age
Table 1  (continued)

Williams et al. (2020)

Quality Ratings
Author (year)

Table 4 shows quality ratings. Twenty-three studies (64%)

were rated as Strong. Among the studies rated as Strong,
most studies were conducted with children or adolescents

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4366 Journal of Autism and Developmental Disorders (2022) 52:4355–4374

Table 2  Study characteristics

Author (year) Age (years) IQ Construct
6–18 19– > 70 < 70 Anxiety Depression Eating dis- Other psychiat- Broadband
turbances ric disorder(s) psychiatric
symptoms

Arnold et al. (2020) v v - – v

Bitsika et al. (2015) v v v
Bitsika and Sharpley (2015) v v v
Bitsika and Sharpley (2020) v v v
Blakeley-Smith et al. (2012) v v v
Burrows et al. (2018) v v v
Cadman et al. (2015) v v v
Carruthers et al. (2020) v v v
den Houting et al. (2019) v – – v
Findon et al. (2016) v v v v v
Hallett et al. (2013) v v v v
Hammond and Hoffman v v v v
(2014)
Hoover and Romero (2019) v – – v
Kaat and Lecavalier (2015) v v v v
Kalvin et al. (2020) v v v
Kalyva (2009) v v v
Karlsson et al. (2013) v v – – v
Keith et al. (2019) v v v
Magiati et al. (2014) v – – v
May et al. (2015) v v v
Mazefsky et al. (2011) v v v v v
Ooi et al. (2016) v v v
Ozsivadjian et al. (2014) v v v v
Park et al. (2020) v v v v v v
Rodgers et al. (2016) v – – v
Schiltz et al. (2017) v v v
Schiltz et al. (2019) v v v v
Sharpley et al. (2015) v v v
Sharpley et al. (2019) v v v
Soh et al. (2020) v – – v
Stern et al. (2014) v v v
Storch et al. (2012) v v v
Uljarević et al. (2018) v v – – v v
Van Steensel et al. (2013) v v v
White et al. (2012) v v v
Williams et al. (2020) v v v
Total (n) 34 7 28 4 29 7 2 4 1

(n = 20, 87%), with participants with an IQ > 70 (n = 21, Discussion

91%), and studying anxiety (n = 20, 87%). Inter-rater
agreement was the most studied psychometric property
(n = 16, 67%). Six studies rated as Strong (26%) examined
criterion validity and only two reported on test–retest reli-
ability (9%).
Participants and Constructs
The studies in this review had sample sizes ranging from 14
to 881; 64% of the studies had a sample size smaller than 100.
Most studies included children and adolescents with average or

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Journal of Autism and Developmental Disorders (2022) 52:4355–4374 4367

Table 3  Coefficients and descriptors of inter-rater agreement, internal consistency, and test–retest reliability
Author (year) Inter-rater agreement Internal consistency Test–retest reliability

Coefficient Descriptor Coefficient Descriptor Coefficient Descriptor

Arnold et al. (2020) – – α = 0.91 Excellent – –

Bitsika et al. (2015 NR (Partial eta – – – –
square = .02)
Bitsika and Sharpley NR (Partial eta – – – –
(2015) square = .11)
Bitsika and Sharpley r = 0.61 Good – – – –
(2020)
Blakeley-Smith et al. ICC = 0.52 Fair – – – –
(2012)
Burrows et al. (2018) NR (Cohen’s d = 0.06) – – – –
Cadman et al. (2015) – – α = 0.92 Excellent – –
Carruthers et al. (2020) ICC = 0.38, 0.59 Poor, Fair α = 0.95, 0.93 Excellent – –
den Houting et al. r = 0.54 Fair – – – –
(2019)
Findon et al. (2016) r = 0.42 Fair α = 0.52 – 0.81 Unacceptable to good r = 0.55–0.74 Fair to good
Hallett et al. (2013) ICC = 0.49 Fair – – – –
Hammond and Hoffman r = 0.61 Good – – – –
(2014)
Hoover and Romero – – α = 0.855 Good – –
(2019)
Kaat and Lecavalier ICC = 0.23, 0.23 Poor α = 0.92, 0.90 Excellent – –
(2015)
Kalvin et al. (2020) r = 0.36, 0.53 Poor, Fair – – – –
Kalyva (2009) r = 0.96 Excellent – – – –
Karlsson et al. (2013) – – α = 0.76 – 0.92 Fair to excellent ICC = 0.508 – 0.967 Fair to excellent
Keith et al. (2019) r = 0.34 Poor – – – –
Magiati et al. (2014) ICC = 0.42, Poor, Fair – – – –
κ = 0.34
May et al. (2015) r = 0.247 Poor – – – –
Mazefsky et al. (2011) – – Comparable to litera- – –
ture
Ooi et al. (2016) ICC = 0.38 Poor – – – –
Ozsivadjian et al. (2014) ρ = 0.43, ICC = 0.59; Fair to good – – – –
ρ = 0.59, ICC = 0.62
Park et al. (2020) – – α = 0.94 Excellent – –
Rodgers et al. (2016) r = 0.68 Good α = 0.94 Excellent ICC = 0.82 Excellent
Schiltz et al. (2017) – – – – r = 0.34–0.65 Poor to good
Schiltz et al. (2019) r = 0.58 Fair – – – –
Sharpley et al. (2015) – – – – r = 0.66 Good
Sharpley et al. (2019) – – – – r = 0.42 Fair
Soh et al. (2020) r = 0.63 Good α = 0.92 Excellent – –
Stern et al. (2014) – – α = 0.92 Excellent – –
Storch et al. (2012) κ = 0.07 – 0.36 Poor – – – –
Uljarević et al. (2018) – – α = 0.84, 0.65 Good, Poor – –
Van Steensel et al. r = 0.39, 0.41 Poor, Fair α = 0.92 Excellent – –
(2013)
White et al. (2012) r = 0.36 Poor α = 0.92 Excellent – –
Williams et al. (2020)a – – – – – -

Coefficient and the descriptor were reported for the Total score if the total score is used for the measure. Subscale values were reported other-
wise
NR not reported
a
No data to report in this table as only criterion validity was reported

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4368 Journal of Autism and Developmental Disorders (2022) 52:4355–4374

Table 4  Quality ratings Author (year) Participants characterization Sample size Measure Quality rating
Diagnosis IQ Age

Arnold et al. (2020) L L H H H Weak

Bitsika et al. (2015 H H H H H Strong
Bitsika and Sharpley (2015) H H H H H Strong
Bitsika and Sharpley (2020) H H H H H Strong
Blakeley-Smith et al. (2012) H H H H H Strong
Burrows et al. (2018) H H H H H Strong
Cadman et al. (2015) H H H H H Strong
Carruthers et al. (2020) H H H H H Strong
den Houting et al. (2019) H L H H H Adequate
Findon et al. (2016) H L H H H Adequate
Hallett et al. (2013) H H H H H Strong
Hammond and Hoffman (2014) H H H L H Adequate
Hoover and Romero (2019) L L H L L Weak
Kaat and Lecavalier (2015) H H H H H Strong
Kalvin et al. (2020) H H H H H Strong
Kalyva (2009) H H H H H Strong
Karlsson et al. (2013) L L H H H Weak
Keith et al. (2019) H H H H H Strong
Magiati et al. (2014) L L H H H Weak
May et al. (2015) H H H H H Strong
Mazefsky et al. (2011) H H H H H Strong
Ooi et al. (2016) H H H H H Strong
Ozsivadjian et al. (2014) L H H H H Adequate
Park et al. (2020) H H H H H Strong
Rodgers et al. (2016) L L H H H Weak
Schiltz et al. (2017) H H H H H Strong
Schiltz et al. (2019) H H H H H Strong
Sharpley et al. (2015) H H H L H Adequate
Sharpley et al. (2019) H H H H H Strong
Soh et al. (2020) H L H H H Adequate
Stern et al. (2014) H H H H H Strong
Storch et al. (2012) H H H H H Strong
Uljarević et al. (2018) H L H H H Adequate
Van Steensel et al. (2013) H L H H H Adequate
White et al. (2012) H H H H H Strong
Williams et al. (2020)a H H H H H Strong

above average IQ and did not include a rationale for excluding
individuals with possible ID. The selection bias on intellec-
tual ability in all areas of autism research has been previously
recognized (Russell et al., 2019). Presumably, investigators
chose participants with average verbal cognitive abilities to
report internal states. Another reason for this exclusion might
be the paucity of psychometric evidence for instruments with
individuals with ID. Self-report has been used with people
with mild to moderate ID, regardless of autism status, to study
internal states (e.g., Emerson & Hatton, 2008; Lunsky & Ben-
son, 2001; Scott & Havercamp, 2014). However, only a small
portion of those measures have been validated (e.g., Huck
et al., 2010; Raczka et al., 2020; Zimmerman & Endermann,
2008), and very little is known on the reliability and valid-
ity of psychiatric assessments (Douma et al., 2006; Emerson,
2005; Hermans & Evenhuis, 2010). Given that 30% of autistic
individuals function in the range of ID, and the prevalence of
psychiatric problems in individuals with ID is high (Cooper
et al., 2007), more research is needed in autistic individuals
with ID. The few studies that included individuals with ID
found in this review showed little difference in psychometric
properties from the studies excluding individuals with ID.

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Journal of Autism and Developmental Disorders (2022) 52:4355–4374
Few studies included adults. Adults are more likely to
consult a mental health professional by themselves and
encounter more situations where they must complete self-
report questionnaires. The few studies reviewed here suggest
that adults can report internal symptoms reliably (Findon
et al., 2016; Karlsson et al., 2013; Park et al., 2020). More
work is clearly needed to strengthen this assertion given the
small number of studies reviewed.
Most studies in this review used a self-report instru-
ment for anxiety. Twelve different instruments were used
to measure anxiety, most frequently the Spence Children’s
Anxiety Scale (SCAS; Spence, 1998) and the Screen for
Child Anxiety Related Disorders (SCARED; Birmaher et al.,
1997). The psychometric properties of all measures had been
assessed in the extant literature or in the reviewed study
with either non-autistic or autistic children. It is noteworthy
that most of the reviewed studies examined internalizing
symptoms which are traditionally perceived to be difficult
for autistic individuals to report.
Psychometric Properties
Most studies reported parent–child agreement and most of
the reported coefficients were poor to fair. A high agree-
ment is not necessarily expected, as different informants
may capture distinct symptoms. In fact, other studies com-
monly report discordant child self-reports and proxy-reports
(Achenbach et al., 1987; Grills & Ollendick, 2002; Renk &
Phares, 2004; Stratis & Lecavalier, 2015). Grills and Ollen-
dick (2002) recommended that parent and child reports
be considered complimentary. The pooled correlation for
21 studies on parent–child agreement in anxiety was 0.45,
which is slightly higher than reported in the general popu-
lation (Achenbach et al., 1987; Grills & Ollendick, 2002;
Renk & Phares, 2004) and in the autism or ID population for
internalizing symptoms (Stratis & Lecavalier, 2015). This
suggests that autistic individuals and their parents agree on
anxiety symptoms just as much as non-autistic individuals
and their parents do.
Most of the self-report instruments showed good to excel-
lent internal consistency. However, very few studies assessed
test–retest reliability. In fact, among the studies that were
rated as Strong, only two assessed test–retest reliability, and
the ratings were obtained 15 months and 2.4 years apart
respectively (Schiltz et al., 2017; Sharpley et al., 2019).
Considering that psychiatric comorbidity is often time-
dependent and that it is common practice to assess test–retest
reliability over a two to four-week period, it is difficult to
interpret those results, especially since most psychiatric
symptoms are time-dependent. For that reason, there is vir-
tually no data on temporal stability of self-reported psychi-
atric symptoms in autistic people.
4369
Nine studies assessed criterion validity by comparing
self-report with a clinician’s diagnosis. More than half of
these studies were rated as Strong. The reviewed studies
reported mostly very low to moderate criterion validity
compared with a clinician’s judgement, and they showed
conflicting results. Carruthers et al. (2020) recommended
lowering cutoff scores of the anxiety measures for higher
sensitivity but Mazefsky et al. (2011) reported low screening
accuracy in all four psychiatric measures including anxiety
even with an alternative cutoff. Cadman et al. (2015), on
the contrary, found that a higher cutoff of the OCD scale
best discriminated autistic individuals with OCD from those
without OCD. Such mixed findings may have been due to
the complex presentation of psychiatric disorders. For exam-
ple, the presentation of depression and anxiety are often
complicated by the social, cognitive, and communicative
impairments that characterize autism (Magnuson & Con-
stantino, 2011; Postorino et al., 2018; Stewart et al., 2006),
and atypical or autism-specific symptoms such as exacerba-
tion of self-injury and aggression, decreased adaptive func-
tioning, regression of previously learned skills, change in
stereotypic behavior or restricted interests, or even catatonia
(Magnuson & Constantino, 2011; Perry et al., 2001; Stewart
et al., 2006). Although Cicchetti (1994) recommended using
the ‘best clinician diagnosis’ as a criterion against which
to compare the results of a normed and standardized test,
the conceptualization of psychiatric disorders in autism and
instruments to capture these symptoms needs to be further
developed. Finally, it is important to note that clinician’s
judgments are also subject to biases (Fitzgerald & Hurst,
2017; Mason & Scior, 2004). Thus, one could argue that
self-report based on an individual’s own subjective experi-
ence is more valuable than relying on a clinician.
Other Implications
The results of this review have implications for outcome
measurement in intervention research and clinical practice.
The instruments reviewed here examined symptoms related
to psychiatric disorders that are often targets of interven-
tions. Given the prevalence of psychiatric comorbidities
in autism, it is important to know under which conditions
self-report instruments are valid and reliable. Having an IQ
lower than 70 was an exclusion criterion in several studies.
Given the paucity of data on the performance of individu-
als with ID, it may be hasty to conclude that low cognitive
ability precludes the possibility of valid and reliable report
of psychiatric symptoms.
It is noteworthy that the literature in the general child
population is not substantially different from what was
observed in the current review. That is, studies of child-
report measures showed high internal consistency (El-Den
et al., 2018; Orgilés et al., 2016; Piqueras et al., 2017; Scaini
13
4370
et al., 2012; Stockings et al., 2015). Screening utility, on
the other hand, has been moderate. Stockings et al. (2015)
concluded that the sensitivity and specificity of four com-
monly used screening tools for depression among children
and adolescents were moderate (pooled estimate: 0.80, 0.78
respectively). Finally, test–retest reliability is not commonly
reported (El-Den et al., 2018; Orgilés et al., 2016; Piqueras
et al., 2017; Scaini et al., 2012; Stockings et al., 2015).
Limitations
This review has a number of limitations. First, we focused
on a number of specific metrics and did not cover other
important issues such as factorial validity and measurement
invariance. It has been acknowledged that autistic individu-
als may interpret the items of the questionnaire differently
from how it was originally intended (Chew et al., 2021).
Our goal was to investigate the use of self-report measures
in psychiatric assessments, rather than evaluate specific
instruments. We made several decisions to harmonize data
across studies and create a concise review. The inclusion
criteria regarding psychometric properties were such that
they may have excluded some studies contributing valuable
information. For instance, studies focusing solely on a type
of convergent validity were excluded as it was challenging
to define the inclusion criteria (i.e., determining which are
adequate comparable measures). Specifically, studies were
not included if they reported on psychometric properties in
a context other than the primary aim. This decision was both
practical (i.e., to avoid “digging” through thousands of result
sections to locate secondary analyses) and scientific (i.e.,
recruitment methods, sample selection, and other decisions
would presumably affect findings). As a result, more than
400 studies were excluded from this review following full
text review for not assessing psychometric properties as a
primary aim of the study. Finally, our quality metric has not
been validated. We used this system because it was simple
but realize that there are multiple variables that define study
quality and other factors could have been considered. We
deliberately chose not to use existing quality rating scales
as we deemed them to be too strict considering a number of
factors specific to the autistic population (e.g., recruitment
challenges, paucity of validated instruments). We acknowl-
edge the system to be simple and arbitrary, but believe it
considers key methodological variables. We also believe
that the simplicity and transparency of the system (Table 4)
makes replication easy. With respect to diagnosis, we wanted
to acknowledge the varying efforts in validating the autism
diagnosis in contrast to simply accepting parent report or a
previous record of medical diagnosis without further evalu-
ation. Along the same lines, we chose a sample size of 25
13
Journal of Autism and Developmental Disorders (2022) 52:4355–4374
to ensure some robustness to the results, yet we recognize
that adequate power is based on study characteristics and
that a much larger sample size is typically required for scale
validation studies (Rouquette & Falissard, 2011).
Recommendations for Future Studies
This was the first systematic review to investigate the use
and psychometric properties of self-report instruments in
the context of psychiatric disorders in autistic individu-
als. The review highlights several research needs. First,
more research is needed in autistic individuals who present
with ID and with adults. No study focused exclusively on
individuals with ID and only one strong study focused
exclusively on adults. Second, studies are needed on
psychiatric symptoms other than anxiety. There are very
few data on the psychometric properties of self-report
instruments of externalizing behaviors, although they are
common in autistic individuals. Third, few studies exam-
ined test–retest reliability or criterion validity. Without
knowing whether autistic individuals can be reliable with
themselves, further conclusions on other important meas-
urement features such as sensitivity to change cannot be
fully addressed. Fourth, studies are needed to identify con-
ditions in which the self-report performance may vary.
There were not enough studies to compare results across
different participant characteristics including age, IQ, or
autism symptoms. Finally, future studies should report
specific details on the accommodations made in measure
administration. The vast majority of studies did not report
if they used accommodations in the procedures for autis-
tic individuals. It is quite likely that many studies made
accommodation such as reading the items to the partici-
pant, modifying certain words, or using visual prompts.
These modifications can impact the psychometric proper-
ties of the instrument and make replication difficult. Exist-
ing measures and administration procedures may need to
be adapted to better suit this population and this needs to
be clearly described.
Author Contributions All authors contributed to the idea for the article.
SYK performed the literature search and data analysis. SYK drafted
the work and LL critically revised the work.
Funding The authors did not receive support from any organization
for the submitted work.
Declarations
Conflict of interest The authors have no relevant financial or non-fi-
nancial interests to disclose.
Journal of Autism and Developmental Disorders (2022) 52:4355–4374 4371

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