Child Psychiatry & Human Development (2021) 52:916–927

https://doi.org/10.1007/s10578-020-01066-6

ORIGINAL ARTICLE

An Evaluation of a New Autism‑Adapted Cognitive Behaviour Therapy

Manual for Adolescents with Obsessive–Compulsive Disorder
Amita Jassi1 · Lorena Fernández de la Cruz2,3 · Ailsa Russell4 · Georgina Krebs1,5

Accepted: 15 September 2020 / Published online: 6 October 2020

© The Author(s) 2020

Abstract
Obsessive–compulsive disorder (OCD) and autism spectrum disorder (ASD) frequently co-occur. Standard cognitive behav-
iour therapy (CBT) for OCD outcomes are poorer in young people with ASD, compared to those without. The aim of this
naturalistic study was to evaluate the effectiveness of a novel adolescent autism-adapted CBT manual for OCD in a special-
ist clinical setting. Additionally, we examined whether treatment gains were maintained at 3-month follow-up. Thirty-four
adolescents underwent CBT; at the end of treatment, 51.51% were treatment responders and 21.21% were in remission.
At 3-month follow-up, 52.94% were responders and 35.29% remitters. Significant improvements were also observed on a
range of secondary measures, including family accommodation and global functioning. This study indicates this adapted
package of CBT is associated with significant improvements in OCD outcomes, with superior outcomes to those reported in
previous studies. Further investigation of the generalizability of these results, as well as dissemination to different settings,
is warranted.

Keywords Obsessive–compulsive disorder · Autism spectrum disorder · Treatment outcomes · Cognitive behaviour therapy

Introduction social, and family functioning [3, 4]. OCD is particularly

common among young people with autism spectrum disor-
Obsessive–compulsive disorder (OCD) is a common psychi- der (ASD); it is estimated that up to 37% of those with ASD
atric condition affecting approximately 0.25–3% of children also experience OCD [5, 6]. Young people with both OCD
and adolescents [1, 2]. The disorder causes substantial dis- and ASD (OCD + ASD) have higher levels of functional
tress and functional impairment, including poor educational, impairment, utilise more mental health services, and have
poorer outcomes following multimodal treatment for OCD,
compared to those with OCD who do not have a diagnosis
Electronic supplementary material The online version of this
article (https​://doi.org/10.1007/s1057​8-020-01066​-6) contains of ASD [7].
supplementary material, which is available to authorized users. Cognitive behaviour therapy (CBT) is the first-line evi-
dence-based treatment for children and adolescents with
* Amita Jassi OCD [8, 9]. Rates of response and remission for children
[email protected]
and adolescents with OCD treated with CBT are high [10,
1
OCD, BDD and Related Disorders Clinic, South London 11]. However, previous studies have indicated that young
and Maudsley NHS Trust, Michael Rutter Centre, De people with OCD + ASD show less improvement in OCD
Crespigny Park, London SE5 8AZ, UK symptoms following standard CBT for OCD both at post-
2
Department of Clinical Neuroscience, Centre for Psychiatry treatment [12] and at 6-month follow-up [13], compared to
Research, Karolinska Institutet, Stockholm, Sweden those who have OCD without ASD. This highlights the need
3
Stockholm Health Care Services, Stockholm County Council, to adapt standard CBT protocols for OCD to better suit the
Stockholm, Sweden developmental and cognitive profile of young people with
4
Department of Psychology, Centre for Applied Autism OCD + ASD. Research has indicated often the reason why
Research, University of Bath, Bath, UK young people with OCD do not respond to CBT is due to
5
Social, Genetic and Developmental Psychiatry Centre, ‘technical failures’ i.e. failure due to inadequacy of treatment
Institute of Psychiatry, Psychology and Neuroscience, King’s [14]. Therefore, having a protocol with the key treatment
College London, London, UK

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Child Psychiatry & Human Development (2021) 52:916–927 917

ingredients, and an adequate dose of these ingredients, can The goal of this study was to evaluate a new CBT manual
reduce the likelihood of technical failures. and workbook specifically developed for adolescents with
A wide range of modifications have been described in sin- comorbid OCD and ASD [32, 33] in an open naturalistic
gle case reports, including extended treatment, greater use study, which tend to have higher external validity than typi-
of visual aids, providing support with emotion recognition, cal RCTs [34]. The treatment manual is based on an existing
incorporating special interests, use of idiosyncratic rating standard CBT manual for adolescents with OCD [35], but
scales, and increased parental involvement [15–22]. There the content has been modified to suit the profile of young
have been a number of randomized controlled trials (RCTs) people with ASD and the package of treatment has been
evaluating CBT for anxiety disorders in young people with extended from 14 to 20 weekly sessions [32, 33]. Our study
ASD, which have included some young people with OCD, aimed to (i) examine the effectiveness of this new treatment
that have found CBT to be effective for this group [23–25]. protocol on OCD symptoms, family accommodation, and
Whilst OCD has commonalities with other anxiety disor- psychosocial functioning; (ii) establish if the extended treat-
ders, it also regarded as being distinct in its presentation ment duration resulted in additional clinical improvement
[26, 27] and its treatment [28], with a focus on response in OCD symptoms; (iii) assess if the treatment gains were
prevention as well as exposure to feared stimuli. Therefore, maintained at 3-month follow-up; and, finally, (iv) investi-
several CBT manuals have been developed specifically for gate the general acceptability of the new treatment approach
individuals with OCD + ASD which have been evaluated and seek feedback about the ASD-specific components from
in two RCTs [29, 30] and a case series [31]. The first RCT young people and their parents. We met these aims by deliv-
focused on adults (n = 33) and a small number of adoles- ering the newly modified treatment manual and workbook to
cents aged 14 years and above (n = 13) with OCD + ASD and a sample of 34 adolescents with OCD + ASD at a specialist
found 20 sessions of modified CBT for OCD to be associated clinic.
with a higher response rate than anxiety management [29].
The second RCT included only children aged 8–12 years
(n = 14) and evaluated function-based group CBT targeted Method
at treating obsessive–compulsive behaviours in the broader
sense, as opposed to OCD per se [30]. Children randomized Setting and Study Participants
to the CBT group showed a significantly greater reduction
in obsessive–compulsive behaviours compared to those in A total of 34 young people with OCD + ASD were con-
the treatment as usual group. Finally, the case series focused secutively recruited to the study from January 2015 to
on adolescents with OCD + ASD aged 11–17 years (n = 9) March 2018 from referrals to the National and Specialist
and evaluated an intensive format of CBT for OCD [31]. OCD, BDD and Related Disorders Clinic, South London
Seven of the nine adolescents responded to treatment, which and Maudsley NHS Trust. The clinic receives referrals from
involved a broad range of 24 to 80 (mean = 46.5 ± 20.9) daily around the UK and often young people have had treatment in
CBT sessions. Although this preliminary evidence is encour- their local child and adolescent mental health services before
aging, these studies were generally small [30, 31], focused the referral to the specialist team is made.
on symptoms rather than an OCD diagnosis [30], used Initial assessments consisted of a three-hour evaluation
intensive CBT [31]—which may not be available or feasi- by a multi-disciplinary team (see Nakatani et al. [36] for
ble to deliver in most clinical settings—or only measured a detailed description of the assessment process). Comor-
outcomes at post-treatment and did not assess maintenance bid diagnoses (except for ASD) were made based on the
of gains over time [30, 31]. Development and Well-Being Assessment (DAWBA) [37].
Further, there are a series of questions that remain unan- All young people had an established diagnosis of ASD
swered. For example, a widely held clinical view is that indi- prior to the assessment at the OCD specialist clinic. In the
viduals with co-occurring OCD and ASD tend to require majority of cases (n = 23; 67.65%), this ASD diagnostic
more OCD treatment sessions over a longer period of time assessment had involved the Autism Diagnostic Observa-
to make meaningful gains, compared to those without ASD. tion Schedule (ADOS) [38] and/or the Autism Diagnostic
Consistent with this, previous research has shown that young Interview-Revised (ADI-R) [39]. The remaining 11 young
people with OCD + ASD are engaged with clinical services people (32.35%) had been diagnosed with ASD via a cli-
for significantly longer than those without ASD [7]. How- nician assessment without these structured measures. No
ever, to date, there is no empirical data to support this view, young people had a diagnosed global learning disability.
and it remains unclear whether extending treatment con- Participants also completed a series of additional assess-
fers an added benefit. This is a crucial question as it has ment measures (see Measures section).
important implications for service delivery and resource All data used in the current study were collected as part
allocation. of clinical practice but are of high standard and routinely

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918 Child Psychiatry & Human Development (2021) 52:916–927

employed for research purposes [40, 41]. Study approval The Children’s Obsessive–Compulsive Inventory (ChOCI)
was granted by the South London and Maudsley Child and
Adolescent Mental Health Service Audit Committee. This is a self-report measure assessing severity of OCD
symptoms and has both a parent (ChOCI-P) and a child ver-
sion (ChOCI-C). ChOCI scores range from 0 to 48, with
Measures higher scores indicating greater severity. The scale includes
an obsessions and a compulsions scale, as well as a total
A series of clinician-reported and self-/parent-reported score. The ChOCI has demonstrated to have good internal
measures, listed below, were completed. Since effect sizes consistency, criterion validity, and convergent validity [51,
have been shown to vary for adapted CBT in people with 52].
ASD depending on the informant, with smaller effect sizes
for self-report and small to medium for informant and clini- Family Accommodation Scale‑Parent Report Version
cians [42], we considered a range of informants. Measures (FAS‑PR)
were applied at several time-points, including the initial
assessment (baseline), session 7, session 14, end of treat- This is a 13-item parent report questionnaire that measures
ment, and 3-month follow-up (unless otherwise specified). the degree to which family members accommodate their
child’s OCD symptoms and the level of distress or impair-
ment that they experience as a result [53]. Each item is rated
Children’s Yale‑Brown Obsessive–Compulsive Scale
in a 5-point likert scale ranging from 0 (never) to 4 (daily)
(CY‑BOCS)
and enquires about the last month. The scale includes two
subscales: involvement in compulsions and avoidance of
The CY-BOCS is a widely used clinician-administered
triggers, as well as a total score [54]. Total scores above 13
measure of OCD symptoms and severity. It includes a check-
indicate clinically significant levels of family accommoda-
list of obsessions and compulsions and a total of 10 items
tion. The FAS-PR has demonstrated a stable factor structure,
assessing the severity of both obsessions and compulsions
excellent internal consistency, good convergent validity, and
(i.e., time spent, interference, distress, resistance, and con-
adequate discriminant validity [54].
trol), with a total score ranging from 0 to 40. The CY-BOCS
has shown excellent psychometric properties with high inter-
The Repetitive Behaviour Questionnaire (RBQ‑2)
rater reliability and construct validity [43, 44].
This is a 20-item parent report measure developed to assess
Clinical Global Impression Scale—Severity (CGI‑S) repetitive behaviours in individuals with ASD, which are a
and Clinical Global Impression Scale—Improvement (CGI‑I) common feature of the disorder. Response choices, based
on the last month, are combined into three alternatives for
The CGI-S is a clinician rating of symptom severity; rat- each item (1: never/rarely; 2: mild/occasional; 3: marked/
ings range from 1 (normal, not at all ill) to 7 (among the notable). A four-factor model has been proposed as best
most extremely ill patients) [45]. The CGI-I is a clinician- fit for the measure, including repetitive motor movements,
rated measure of symptom improvement and is also rated rigidity/adherence to routine, preoccupations with restricted
on a 7-point scale ranging from 1 (very much improved) patterns of interest, and unusual sensory interests [55]. The
to 7 (very much worse) [46]. The CGI-S has demonstrated RBQ-2 has good internal consistency and inter-item validity
strong correlations with the CY-BOCS total score (r = 0.75) [55]. This measure was applied at all time-points except for
in paediatric OCD research [44]. These scales have been session 14. Since scores on the RBQ-2 were not expected to
used in research and clinical contexts [47] and has shown change over time (since the applied OCD treatment does not
good concurrent validity and sensitivity to change [48]. target ASD symptoms), it was not considered an outcome
measure as such.

Children’s Global Assessment Scale (CGAS) The Work and Social Adjustment Scale‑Youth Version
(WSAS‑Y) and Parent Version (WSAS‑P)
The CGAS is an adaptation of the Global Assessment Scale
for adults. It is a clinician-rated scale that measures global This is a self-report measure assessing functional impair-
level of functioning in children across different domains. ment resulting from the presenting condition (i.e., OCD).
The scale ranges from 1 to 100, with higher scores indicating The original version for adults was developed by Marks
better functioning. The CGAS has shown good psychometric [56] and it has been adapted for use in young people and
properties, including good inter-rater reliability [49, 50]. their parents [57]. It consists of five items assessing global

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impairment, with scores ranging from 0 to 40, with higher of a standard CBT protocol for OCD [35]. While the origi-
scores indicating greater functional impairment. The WSAS- nal protocol involves 14 sessions, treatment in this study
Y/P has demonstrated to have excellent internal consistency, was extended to include 20 sessions, which were delivered
adequate test–retest reliability, and good convergent validity weekly. Details of the treatment and specific ASD modifica-
[57]. tions are outlined in Table 1.
All participants progressed through the treatment manual
Treatment Satisfaction Survey in the same order. The psychoeducation phase of this modi-
fied treatment took up to six sessions, whereas in the stand-
Young people and families were given a series of questions ard package this typically takes two sessions [35]. Other
(see Supplement) asking how overall satisfied they were broader ASD modifications of the standard protocol were
with the received treatment, as well as with specific com- the highly structured content of each session, with timings
ponents of the treatment, including the ASD modifications being put on agenda items and being ticked off as session
(e.g., visual materials and worksheets, sessions on under- progressed, visual worksheets, and incorporation of special
standing ASD and the differences between OCD and ASD, interests wherever possible. Scheduled homework each week
and parental involvement in the sessions). The satisfaction was set to consolidate in-session learning. Parents were
survey was only applied at post-treatment. encouraged to attend sessions, either by sitting in for the
entire session or joining for a parent check-in at the end of
Modified CBT for OCD in Youth with ASD the session to hear what was covered and what homework
was set. Sessions took place in the clinic, at home, and in
All participants received individual modified CBT that environments where OCD typically got triggered.
included as a main component exposure and response pre-
vention (ERP) [32, 33] delivered by experienced clinical Statistical Analysis
psychologists, all of whom had a doctoral level of clinical
training, who specialised in the treatment of OCD and had Mixed-effects regression analyses for repeated measures
between 2–16 years of experience with this patient group. with maximum likelihood estimation (MLE) of parameters
All therapists attended a training workshop delivered by were implemented in Stata SE/13.1. Mixed-effects models
author AJ which covered what was included in the adapted use all available data, can properly account for correlation
treatment protocol. Each therapist received weekly supervi- between repeated measurements on the same subject, have
sion from a senior clinical psychologist and was encouraged greater flexibility to model time effects, and can handle
to bring recordings of sessions for discussion to the supervi- missing data [58]. For each outcome measure, the model
sion sessions. The modified CBT protocol was an adaptation included fixed effects of time and subject effects as a random

Table 1  Description of cognitive behaviour therapy for obsessive–compulsive disorder, with autism spectrum disorder modifications
Session content ASD modifications

Sessions 1–6 Psychoeducation on OCD, ASD, and anxiety Differentiating OCD- and ASD-related repetitive behaviour.
Externalising OCD, normalising anxiety, reframing anxiety as Extended psychoeducation on anxiety.
a protective mechanism (the ‘fight or flight’ response), and Understanding how anxiety differs from other emotions.
OCD hierarchy formation Development of an idiosyncratic anxiety rating scale.
Sessions 7–19 Graded ERP Visual, mini-hierarchies for each step of the main hierarchy to
Young people facing increasingly challenging fears on an OCD allow young people to take smaller steps during the exposure
hierarchy process.
Emphasising the similarities between tasks conducted in ses-
sions and for homework to promote generalisation.
Off-site visits to conduct ERP tasks to make them ecologically
valid.
Families leading ERP tasks to allow them to be able to use the
tools between sessions and to prepare them for when treat-
ment ends.
Session 20 Relapse prevention
Reflecting on progress in treatment.
Reviewing goals set at the beginning of treatment.
Developing a plan of what to do in the event of a set-back.
Setting goals for the future.

ASD Autism Spectrum Disorder, ERP Exposure and Response Prevention, OCD Obsessive–Compulsive Disorder

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intercept factor to account for the variances between partici- the 20 stipulated sessions (two dropped out of treatment
pants and within participants. after sessions 14 and 15 and three completed treatment
Additionally, percentages of treatment responders and at sessions 17, 18, and 19 due to an improvement of their
remitters were calculated at the end of the treatment and at symptoms) and five more received 21, 23, 27, 28, and
3-month follow-up. According to consensus definitions [59], 30 sessions since the corresponding therapist considered
response was defined as a reduction ≥ 35% in the CY-BOCS that further benefit could be obtained from those extra
score and a CGI-I score of 1 or 2, and remission was defined sessions before terminating the treatment.
as a score of ≤ 12 in the CY-BOCS and a CGI-S of 1 or 2. Estimated mean CY-BOCS scores and standard errors
Alpha (two-tailed) was set at p < 0.05 for all analyses. Num- (SE) from the mixed-effects model for each time-point are
bers may vary across analyses as a result of missing values. shown in Table 3. The linear mixed-effect regression model
on the CY-BOCS revealed that there was a significant effect
of time at all time-points, compared to baseline, indicating
Results an improvement of the OCD symptoms over time (Table 4
and Fig. 2). The estimated reduction from baseline to post-
Demographic and Baseline Clinical Characteristics treatment was around 11 points in the CY-BOCS (− 11.14
of the Sample [− 13.07, − 9.20]).
An additional pairwise comparison between session
Demographic and clinical characteristics of the 34 study 14 and the end of the treatment showed a notable, statis-
participants are summarized in Table 2. Two thirds of the tically significant reduction of the estimate between these
sample were boys (67.64%), the mean age at assessment was time-points (− 5.31 [− 7.25, − 3.38]), which indicated
approximately 15 years (range 11–17), and the mean age that the addition of extra sessions to the regular 14-session
of OCD onset was 11 years. A very large majority (n = 31; protocol translated into further significant OCD symptom
91%) were on psychotropic medication at the time of the ini- improvement.
tial assessment. All patients on medication were on selective In order to assess durability of the CY-BOCS reduc-
serotonin reuptake inhibitors. Additionally, seven of these tion, we ran a pairwise comparison between the end of
individuals were on antipsychotics and two were on other the treatment time-point and the 3-month follow-up time-
drugs, namely procyclidine, lithium, and attention-deficit/ point, which resulted in a non-significant estimate (0.01
hyperactivity disorder drugs. Twenty-five (73.52%) had pre- [− 1.95, 1.92], p = 0.991), indicating that the OCD symp-
viously undertaken CBT treatment at the time of the initial toms remained stable during the follow-up, after treatment
assessment. Seven (20.58%) participants met diagnostic cri- termination.
teria for at least one other psychiatric disorder, besides OCD Results for the rest of measures for the study participants
and ASD, most commonly an anxiety disorder. are also shown in Tables 3 and 4. The results of the linear
Youth in the sample showed moderate to severe symp- mixed-effect regression models for these outcomes showed
toms of OCD, as measured with the CY-BOCS, the ChOCI- overall significant improvements across all measures to both
C, and the ChOCI-P. Additionally, they were assessed as the end of the treatment and the 3-month follow-up, rela-
markedly ill, according to the CGI-S. Mean FAS-PR scores tive to baseline. Whilst the RBQ-2 was not considered an
fell well above the clinical cut-off of 13, indicating clini- outcome measure per se, the total scores and all subscales,
cally significant levels of family accommodation. Partici- with the only exception being Rigidity/Adherence to Routine
pants presented scores in the moderate degree of interfer- subscale, also showed a significant improvement over time.
ence in functioning in all domains, according to the CGAS.
This impairment was also reflected in the high scores on the
WSAS-Y and WSAS-P. Treatment Response and Remission

Treatment Outcomes Following CBT for OCD The mean CY-BOCS percentage reduction from baseline
in Youth with ASD to post-treatment was 38%, while the percentage reduction
from baseline to the 3-month follow-up was 40%. Based
Young people in the study received a mean number of on these reductions and on the CGI-I scores, 17 out of 33
20 sessions (sd = 3.07, range 14–30; Fig. 1). Despite the participants (51.51% – one excluded due to missing CGI-S
treatment was protocolised and had a standard duration score) were classified as treatment responders at the end
of 20 sessions, the naturalistic nature of the study and of the treatment and 18 individuals out of 34 participants
the fact that patients were receiving this treatment at a (52.94%), were responders at the 3-month follow-up. Sim-
regular specialist clinic allowed for a certain degree of ilarly, based on CY-BOCS and CGI-S scores, seven par-
flexibility. Five study participants received less than ticipants out of 33 (21.21%—one excluded due to missing

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Table 2  Baseline demographic and clinical characteristics of the sample of children and adolescents with obsessive–compulsive disorder and
comorbid autism spectrum disorder (n = 34)
Demographic variables Data available Frequency %
n

Sex, boys 34 23 67.64 –

Demographic variables Data available Mean sd Range
n

Age at assessment, in years 34 15.18 1.70 11–17

Age of onset of the OCD, in years 29 11.52 2.68 7–16
Clinical variables Data available Frequency %
n

On medication at the time of assessment 34 31 91.18 –

Previous cognitive behaviour therapy 34 25 73.53 –
Psychiatric comorbidity, besides OCD and ASD 34 7 20.58 –
Anxiety disorders 34 4 11.76 –
Attention-deficit/hyperactivity disorder 34 2 5.88 –
Body dysmorphic disorder 34 1 2.94 –
Tourette syndrome 34 1 2.94 –
Psychiatric symptoms measures Data available Mean sd Range
n

Clinician-reported
CY-BOCS 34 27.65 4.15 15–34
CGI-S 34 5.06 0.89 3–6
CGAS 33 42.24 7.94 27–63
Self- and parent-reported
CHOCI-C total 20 30.80 8.71 15–45
CHOCI-C obsessions 20 14.80 5.32 0–23
CHOCI-C compulsions 20 16.00 4.30 8–22
CHOCI-P total 24 32.62 9.25 0–44
CHOCI-P obsessions 25 16.28 4.81 0–22
CHOCI-P compulsions 24 16.46 5.16 0–22
FAS-PR total 24 29.67 13.67 3–47
FAS-PR avoidance 24 15.08 7.47 0–24
FAS-PR involvement 24 14.58 7.00 3–23
RBQ-2 total 18 38.28 9.36 22–53
RBQ-2 repetitive motor movements 18 9.00 3.66 5–17
RBQ-2 rigidity/adherence to routine 18 14.50 4.45 0–20
RBQ-2 preoccupation/restricted patterns 18 12.33 3.36 7–19
RBQ-2 unusual sensory interests 18 7.44 2.87 3–14
WSAS-Y 18 20.61 11.11 5–40
WSAS-P 21 27.52 7.63 14–40

ASD Autism Spectrum Disorder, CGAS Children’s Global Assessment Scale, CGI-S Clinical Global Impression—Severity, CHOCI-C Children’s
Obsessional Compulsive Inventory—Child Version, CHOCI-P Children’s Obsessional Compulsive Inventory—Parent Version, CY-BOCS Chil-
dren’s Yale-Brown Obsessive Compulsive Scale, FAS Family Accommodation Scale, OCD Obsessive–Compulsive Disorder, RBQ Repetitive
Behaviours Questionnaire, WSAS-P Work and Social Adjustment Scale—Parent Version, WSAS-Y Work and Social Adjustment Scale—Youth
Version

CGI-I score) were classified as remitters at the end of the Treatment Satisfaction
treatment; this number increased to 12 out of 34 (35.29%)
at the 3-month follow-up. Sixteen of the 34 (47.05%) young people and 18 parents
(52.94%) responded to the survey. A total of 13 (81.25%)

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Fig. 1  Histogram for the num-

ber of sessions received during

20
the treatment by the study
participants (n = 34)

15
Frequency
105
0

10 15 20 25 30
Number of Sessions

Table 3  Model estimates across time-points for each outcome measure from the linear mixed-effects models
Measures of psychiatric symptoms Baseline Session 7 Session 14 End of treatment 3-month follow-
up
Mean SE Mean SE Mean SE Mean SE Mean SE

CY-BOCS 27.65 0.96 24.94 0.96 21.82 0.96 16.51 0.98 16.50 0.96
CGAS 42.16 1.66 45.10 1.71 49.57 1.71 53.82 1.64 54.75 1.66
CHOCI-C total 30.45 2.06 23.04 1.86 25.21 2.36 17.28 2.51 19.69 2.43
CHOCI-C obsessions 14.52 1.16 9.29 1.04 11.85 1.33 10.29 1.42 9.51 1.37
CHOCI-C compulsions 15.71 1.08 13.76 0.99 13.36 1.22 10.09 1.30 10.31 1.26
CHOCI-P total 32.53 2.11 24.63 2.03 24.06 2.64 19.11 2.49 17.78 2.83
CHOCI-P obsessions 16.24 1.14 10.51 1.12 11.94 1.50 9.31 1.37 8.33 1.56
CHOCI-P compulsions 16.43 1.10 14.11 1.06 12.71 1.38 9.77 1.30 9.52 1.48
FAS total 28.85 2.34 27.89 2.37 22.75 2.60 17.84 2.55 17.25 2.64
FAS avoidance 14.80 1.26 13.39 1.28 10.58 1.40 8.33 1.38 8.19 1.43
FAS involvement 14.06 1.23 14.48 1.25 12.16 1.37 9.49 1.35 9.04 1.39
RBQ-2 ­totala 37.75 2.35 31.79 2.22 – – 29.81 2.53 30.29 2.69
RBQ-2 repetitive motor Movements 8.90 0.70 6.92 0.66 – – 5.91 0.73 6.28 0.80
RBQ-2 rigidity/adherence to Routine 14.30 1.10 13.13 1.04 – – 11.65 1.19 12.56 1.27
RBQ-2 preoccupation/restricted Patterns 12.23 0.78 9.99 0.74 – – 9.32 0.84 9.48 0.89
RBQ-2 unusual sensory interests 7.26 0.53 5.68 0.50 – – 5.76 0.56 5.65 0.59
WSAS-Y 20.62 2.04 20.62 1.98 21.12 2.23 15.54 2.22 13.23 2.28
WSAS-P 27.13 1.72 23.68 1.73 20.16 1.92 17.11 1.88 18.05 1.97

CGAS children’s global assessment scale, CHOCI-C children’s obsessional compulsive inventory—child version, CHOCI-P children’s obses-
sional compulsive inventory—parent version, CY-BOCS children’s Yale-brown obsessive compulsive scale, FAS family accommodation scale,
RBQ repetitive behaviours questionnaire, WSAS-P work and social adjustment scale—parent version, WSAS-Y work and social adjustment
scale—youth version
a
The RBQ-2 was not applied at session 14

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Table 4  Results of the time effects across time-points for each outcome measure from the linear mixed-effects models
Measures of psychiatric Coefficient (95% CIs)
symptoms
Baseline to session 7 Baseline to session 14 Baseline to end of the Baseline to 3-month follow-
outcomes outcomes treatment outcomes up outcomes

CY-BOCS − 2.71 (− 4.61, − 0.81)** − 5.82 (− 7.72, − 11.14 (− 13.07, − 11.16 (− 13.05,
− 3.92)*** − 9.20)*** − 9.25)***
CGAS 2.94 (− 0.56, 6.43) 7.40 (3.90, 10.90)*** 11.66 (8.29, 15.02)*** 12.58 (9.19, 15.97)***
CHOCI-C total − 7.41 (− 12.29, − 5.23 (− 10.91, 0.44) − 13.17 (− 19.04, − 10.76 (− 16.52,
− 2.54)** − 7.29)*** − 5.00)***
CHOCI-C obsessions − 5.23 (− 8.04, − 2.67 (− 5.93, 0.59) − 4.22 (− 7.61, − 0.84)* − 5.00 (− 8.32, − 1.69)**
− 2.41)***
CHOCI-C compulsions − 1.95 (− 4.33, 0.43) − 2.35 (− 5.15, 0.45) − 5.62 (− 8.50, − 5.40 (− 8.24, − 2.57)***
− 2.74)***
CHOCI-P total − 7.90 (− 13.19, − 8.47 (− 14.73, − 13.42 (− 19.40, − 14.75 (− 21.27,
− 2.60)** − 2.21)** − 7.44)*** − 8.22)***
CHOCI-P obsessions − 5.72 (− 8.60, − 4.29 (− 7.79, − 0.80)* − 6.92 (− 10.18, − 7.91 (− 11.48, − 4.34)***
− 2.85)*** − 3.67)***
CHOCI-P compulsions − 2.32 (− 5.08, 0.44) − 3.72 (− 6.98, − 0.45)* − 6.66 (− 9.78, − 6.90 (− 10.31, − 3.50)***
− 3.55)***
FAS total − 0.96 (− 5.04, 3.12) − 6.10 (− 10.69, − 11.00 (− 15.40, 11.60 (− 16.19, − 7.01)***
− 1.51)** − 6.61)***
FAS avoidance − 1.41 (− 3.62, 0.80) − 4.22 (− 6.71, − 1.74)** − 6.47 (− 8.85, − 6.61 (− 9.09, − 4.12)***
− 4.10)***
FAS involvement 0.42 (− 1.78, 2.62) − 1.89 (− 4.37, 0.58) − 4.56 (− 6.93, − 5.01 (− 7.49, − 2.54)***
− 2.20)***
RBQ-2 ­totala − 5.96 (− 11.19, − 0.73)* – − 7.93 (− 13.67, − 7.45 (− 13.52, − 1.39)*
− 2.20)**
RBQ-2 repetitive motor − 1.98 (− 3.57, − 0.38)* – − 2.99 (− 4.70, − 1.29)** − 2.62 (− 4.46, − 0.78)**
Movements
RBQ-2 rigidity/adherence − 1.17 (− 3.67, 1.34) – − 2.65 (− 5.40, 0.09) − 1.73 (− 4.64, 1.17)
to Routine
RBQ-2 preoccupation/ − 2.24 (− 3.91, − 0.58)** – − 2.91 (− 4.73, − 1.09)** − 2.75 (− 4.68, − 0.82)**
restricted Patterns
RBQ-2 unusual sensory − 1.59 (− 2.62, − 0.55)** – − 1.50 (− 2.63, − 0.37)** − 1.61 (− 2.82, − 0.41)**
interests
WSAS-Y 0.00 (− 4.09, 4.10) 0.50 (− 4.12, 5.13) − 5.08 (− 9.65, − 0.50)* − 7.38 (− 12.08, − 2.68)**
WSAS-P − 3.45 (− 7.33, 0.43) − 6.98 (− 11.14, − 10.02 (− 14.06, − 9.08 (− 13.30, − 4.87)***
− 2.81)** − 5.98)***

CGAS Children’s Global Assessment Scale, CHOCI-C Children’s Obsessional Compulsive Inventory—Child Version, CHOCI-P Children’s
Obsessional Compulsive Inventory—Parent Version, CY-BOCS Children’s Yale-Brown Obsessive Compulsive Scale, FAS Family Accommoda-
tion Scale, RBQ Repetitive Behaviours Questionnaire, WSAS-P Work and Social Adjustment Scale—Parent Version, WSAS-Y Work and Social
Adjustment Scale—Youth Version
a
The RBQ-2 was not applied at session 14
***
p < 0.001 **p < 0.01 *p < 0.05

young people and 18 (100%) parents reported that they learning about the differences between OCD and ASD
were overall either very happy or happy with the treatment (n = 13; 81.25% of young people and n = 16; 88.89% of
they received. A majority said they found CBT taught parents); learning about anxiety and differentiating anxi-
them many or some useful techniques for fighting OCD ety from other emotions (n = 12; 81.25% of young people
(n = 14; 87.5% of young people and n = 17; 94.44% of and n = 16; 88.89% of parents); involvement of family in
parents). All ASD-treatment modification elements were sessions (n = 12; 75% of young people and n = 18; 100%
rated as very helpful or somewhat helpful by the major- of parents); and graded exposure during sessions and for
ity of young people and parents: visual material (n = 13; homework (n = 13; 81.35% of young people and n = 18;
81.25% of young people and n = 15; 83.33% of parents); 100% of parents).

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924 Child Psychiatry & Human Development (2021) 52:916–927

Fig. 2  Time effects on the Chil-

30
dren’s Yale-Brown Obsessive–
Compulsive Scale, derived from
the mixed-effects regression
model. Error bars indicate 95%
confidence intervals. C-BOCS
Children’s Yale-Brown Obses-

CY-BOCS Total Score

sive Compulsive Scale, 3 m FU

25
3-month follow-up

20 15

Baseline Session 7 Session 14 End of treatment 3m FU

Time

Discussion Previous studies have recommended an extended treat-

ment programme for people with comorbid OCD + ASD
The current study represents the largest evaluation to date [29]. The current study was the first to examine if this is
of manualised autism-adapted CBT for adolescents with of added benefit. We found significant reductions in OCD
OCD. We successfully delivered a modified treatment pro- symptoms during the extended phase of treatment (i.e.,
gramme which was well received by young people and beyond the standard 14 sessions). There was a decrease
their parents. We found that OCD symptoms significantly of around 5 points in the CY-BOCS score from session
reduced over the course of treatment, with gains being 14 to end of treatment, which was similar to the reduction
maintained at 3-month follow-up. At the end of treatment, obtained between baseline and session 14. This indicates
approximately half of the adolescents could be classified that the additional sessions, where there is a main focus on
as OCD treatment responders, and just over a fifth as ERP, significantly contributed to a further improvement of
remitters. The response rate is broadly similar to that in the OCD symptoms. Moreover, young people and their fami-
a previous study of standard CBT for OCD (14 sessions) lies were overall satisfied with the treatment and noted that
in children and adolescents with ASD carried out by our they found the ASD-specific modifications to be beneficial.
group [9] (51.51% in the current study vs. 46% in the pre- A strength of this study was the inclusion of a range of
vious study), while the rates of remission in our study were secondary outcome measures. Evidence of improvement
higher (21.21% in the current study vs. 9% in the previ- over time in OCD symptoms was evident across inform-
ous study). This discrepancy is unlikely to be explained ants. Specifically, parent- and child-reported OCD symptom
by differences in the samples between these studies; both measures mirrored that of clinicians, with significant reduc-
groups were treated in the same specialist clinic, had high- tions in total scores, already evident by session seven. It is
moderate OCD severity, similar proportions were on SSRI interesting that OCD symptoms significantly reduced from
medication, and were comparable in age and age of onset baseline to session seven, and in particular the self- and par-
of OCD. Moreover, the response and remission criteria ent-reported levels of obsessions, rather than compulsions.
employed in the current study were more stringent, with Our hypothesis is that the longer psychoeducation received
the inclusion of the CGI-I and CGIS-S and not just relying as first element of the modified treatment may have offered
on CY-BOCS reduction or score as a measure [59]. Thus, support to young people with ASD in understanding and
our findings provide preliminary evidence that the modi- feeling less distressed about their obsessions. Of interest,
fied CBT package is likely to be associated with superior significant reductions in family accommodation were found
outcomes when treating young people with ASD, com- by the end of treatment and at 3-month follow-up. However,
pared to standard CBT for OCD. reductions were not appreciated at session seven. This is in

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Child Psychiatry & Human Development (2021) 52:916–927 925

keeping with treatment content, whereby family accommo- were missing, corresponding to the end of the treatment
dation is only addressed from session seven onwards within (session 20) scores of two individuals that dropped out
an ERP framework [32, 33]. of treatment after sessions 14 and 15 despite their lack of
Whilst ASD-related repetitive behaviours were not improvement, although the 3-month follow-up measures
specifically targeted in treatment or deemed an outcome could be gathered for both. Third, given that we did not
measure as such, it was interesting to see that there was a have a waitlist control group, we cannot be sure that symp-
significant reduction by the end of treatment in repetitive toms did not spontaneously improve with the passage of
motor movements, unusual sensory interests, and preoccu- time. However, this is unlikely given that this group had
pations with restricted patterns of interest. However, there had OCD for an average of four years and a vast majority
was no significant change in rigidity/adherence to routine. had had previous CBT for the disorder (74%) and/or were
It may be the case that study participants were able to apply already on SSRI medication (91%) without having shown
some of the principles of CBT for OCD to some repetitive a satisfactory treatment response. Additionally, this study
behaviour domains. Alternatively, construct overlap in meas- did not have the benefit of an active control condition to
urement methods mean that the RBQ-2 may be capturing assess whether modified CBT was superior to other treat-
OCD-related compulsions which were explicit treatment tar- ments, including standard CBT for OCD. Despite com-
gets. Then again, a more general reduction in anxiety levels paring our figures to those reported in a previous study
brought about by OCD-related improvements may confer conducted in the same population in our clinic, a head
wider benefits in respect of autism symptoms. Significant to head comparison under the same conditions would be
associations between several subscales of the repetitive necessary. Fourth, whilst we used a protocolised treatment
behaviour measure used in the present study and anxiety and all therapists were experienced and closely supervised,
have been reported, with researchers proposing a complex we did not take formal measures of protocol adherence.
mediating relationship between sensory hypo- and hyper- Finally, the protocol was tested at a specialist OCD and
reactivity and anxiety [60]. related disorders clinic and it whether results would gen-
The results of this study have several clinical implications eralize to other settings remains to be tested.
for future research and for the planning of clinical services
and policies. We have shown the preliminary effectiveness of
an intervention delivered following a workbook and manual
[32, 33], with weekly supervision, indicating the potential Summary
for this treatment to be transferable and benefit a large pro-
portion of adolescents with OCD + ASD. Future work in This study showed that a protocolised CBT for OCD pack-
larger samples should focus on investigating whether this age systematically incorporating modifications for adoles-
programme generalises to different contexts and populations cents with ASD was associated with significant improve-
with the final goal of disseminating it broadly to different ments in OCD symptoms as well as family accommodation
settings, such as non-specialist clinics. We have shown the and psychosocial functioning. Against expectations, there
value of modifying a treatment protocol by adding ASD- were also changes in ASD-related repetitive behaviours
tailored elements and additional sessions. If the improve- throughout the course of treatment. Treatment gains after
ment in treatment outcomes using this tailored programme 14 sessions were further maximised at session 20. Addition-
is indeed confirmed to be superior to the improvement ally, treatment outcomes were durable up to the 3-month
obtained with the standard programme in a RCT, the use follow-up time-point. Young people and parents receiving
of the modified treatment could translate into a reduction of the treatment were overall satisfied and highlighted the ben-
clinical and societal costs by reducing clinical contacts and efit of specific modifications for ASD. Further investigation
other costs derived from patient-related impairment such as of the generalizability of these treatment results, as well as
school absence or parental leave. dissemination to different settings, is warranted.
Our results should also be considered in the context
of some limitations. First, whilst this study is larger than
most conducted to date (previous sample sizes ranged from Funding A.J is supported by NIHR Maudsley Biomedical Research
Centre (BRC). G.K. is funded by a Medical Research Council (MRC)
9 to 25 participants) [12, 13, 30, 31], this study still had a Clinical Research Training Fellowship (MR/N001400/1).
relatively small sample size. Second, given that this was
a naturalistic study, there was some degree of data loss. Compliance with Ethical Standards
However, this mainly applied to secondary self-reported
and parent-reported measures. For the CY-BOCS, for Conflict of interest Lorena Fernández de la Cruz receives royalties for
example, which was our main outcome, only two out of contributing articles to UpToDate, Wolters Kluwer Health, outside the
170 possible data points (34 participants by 5 time-points) submitted work. The rest of authors report no conflicts of interest.

13
926 Child Psychiatry & Human Development (2021) 52:916–927

Open Access This article is licensed under a Creative Commons Attri- disorder in young people with and without autism spectrum dis-
bution 4.0 International License, which permits use, sharing, adapta- orders: a case controlled study. Psychiatry Res 228(1):8–13
tion, distribution and reproduction in any medium or format, as long 13. Griffiths DL, Farrell LJ, Waters AM, White SW (2017) Clini-
as you give appropriate credit to the original author(s) and the source, cal correlates of obsessive compulsive disorder and comorbid
provide a link to the Creative Commons licence, and indicate if changes autism spectrum disorder in youth. J Obsess Compuls Relat Dis-
were made. The images or other third party material in this article are ord 14:90–98
included in the article’s Creative Commons licence, unless indicated 14. Krebs G, Isomura K, Lang K, Jassi A, Heyman I, Diamond H,
otherwise in a credit line to the material. If material is not included in Mataix-Cols D (2015) How resistant is ‘treatment-resistant’
the article’s Creative Commons licence and your intended use is not obsessive-compulsive disorder in youth? Br J Clin Psychol
permitted by statutory regulation or exceeds the permitted use, you will 54(1):63–75
need to obtain permission directly from the copyright holder. To view a 15. Elliott SJ, Fitzsimons L (2014) Modified CBT for treatment of
copy of this licence, visit http://creat​iveco​mmons​.org/licen​ses/by/4.0/. OCD in a 7-year-old boy with ASD—a case report. J Child Ado-
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