Modified Cognitive Behavior Therapy for Severe,

Treatment-Resistant Obsessive-Compulsive Disorder in an

Adolescent With Autism Spectrum Disorder
Georgina Krebs,1,2 Kim Murray,1 and Amita Jassi1,2
1
Institute of Psychiatry, Psychology & Neuroscience, King’s College London
2
OCD and Related Disorders Clinic for Young People, South London and Maudsley NHS
Foundation Trust
There is a high rate of comorbidity between obsessive-compulsive disorder (OCD) and autism spectrum
disorders (ASD). Standard cognitive-behavior therapy (CBT) protocols have been shown to be less
effective in treating OCD in young people with ASD than in typically developing youth. This case study
describes the treatment of an adolescent boy with severe, treatment-resistant OCD and ASD using a
modified CBT approach. Modifications to a standard evidence-based CBT for OCD protocol included
extended psychoeducation about anxiety; regular home-based sessions; and increased involvement of
systems, including family and school. Multi-informant outcome data indicated significant improvements
in OCD symptoms over the course of treatment with gains being maintained over a 12-month follow-
up period. These findings demonstrate the potential efficacy of modified CBT for pediatric OCD in the
context of ASD.  C 2016 Wiley Periodicals, Inc. J. Clin. Psychol. 00:1–12, 2016.

Keywords: obsessive-compulsive disorder; autism spectrum disorder; cognitive behavior therapy;

exposure with response prevention

Obsessive-compulsive disorder (OCD) is a highly impairing condition characterized by un-

wanted thoughts, images, or urges and accompanying compulsive behaviors that are performed
in an attempt to neutralize anxiety. The disorder has an estimated prevalence of 1%–4% in
community samples (Douglass, Moffitt, Dar, McGee, & Silva, 1995; Heyman et al., 2001) and
rates are substantially higher among individuals with autism spectrum disorders (ASD). Indeed,
a meta-analysis of data from 31 studies found the prevalence of OCD among youth with ASD
to be over 17% (Steensel, Bögels, & Perrin, 2011). Despite high rates of comorbidity, there is
limited evidence for the effective treatment of OCD in youth with ASD.
Cognitive-behavior therapy (CBT) including exposure and response prevention (ERP) is an
efficacious (Watson & Rees, 2008) and internationally recommended (Geller & March, 2012;
National Institute for Health and Clinical Excellence, 2005) treatment for typically developing
youth with OCD. However, it has been suggested that standard CBT approaches are not optimal
for individuals with ASD due to difficulties recognizing and reporting thoughts, feelings and
behaviors (Attwood, 2007); cognitive rigidity (Hill, 2008); difficulties with generalizing princi-
ples from one situation to another (National Research Council, 2001); and impaired executive
functioning leading to poor organization and planning (Attwood, 2007). Consistent with this
view, a recent study found that young people with ASD and co-occurring OCD responded less
well to standard CBT than their typically developing counterparts (Murray, Jassi, Mataix-Cols,
Barrow, & Krebs, 2015), thereby supporting the widely held clinical opinion that CBT requires
modification for young people with ASD.

Please address correspondence to: Dr Georgina Krebs, MRC Social, Genetic & Developmental Psychiatry
Centre, Institute of Psychiatry, Psychology and Neuroscience – PO80, De Crespigny Park, Denmark Hill,
London, SE5 8AF, United Kingdom. E-mail: [email protected]

JOURNAL OF CLINICAL PSYCHOLOGY, Vol. 00(0), 1–12 (2016) 

C 2016 Wiley Periodicals, Inc.

Published online in Wiley Online Library (wileyonlinelibrary.com/journal/jclp). DOI: 10.1002/jclp.22396

2 Journal of Clinical Psychology, September 2016

To date, the literature on modified CBT for OCD in young people with ASD is largely
limited to a small number of single case reports (Elliott & Fitzsimons, 2014; Farrell, James,
Maddox, Griffiths, & White, 2016; Lehmkuhl, Storch, Bodfish, & Geffken, 2008; Nadeau,
Arnold, Storch, & Lewin, 2013; Reaven & Hepburn, 2003; Rooney, Alfano, Walsh, & Parr,
2011). These cases highlight a number of strategies that have been used when successfully treating
OCD with CBT in young people aged 7 (Elliott & Fitzsimons, 2014; Reaven & Hepburn, 2003;
Rooney et al., 2011) to 16 years (Farrell et al., 2016) with ASD. In all cases, CBT was based
on standard ERP protocols but with the following various modifications: using special interests
to promote engagement and understanding (Elliott & Fitzsimons, 2014; Farrell et al., 2016;
Reaven & Hepburn, 2003); adopting a literal style of communication and avoiding figurative
language (Lehmkuhl et al., 2008; Reaven & Hepburn, 2003); using images, drawings or cut-
outs to overcome verbal difficulties (Elliott & Fitzsimons, 2014; Farrell et al., 2016); keeping
the therapeutic process predictable and consistent (Elliott & Fitzsimons, 2014); using reward
systems to promote engagement (Elliott & Fitzsimons, 2014; Farrell et al., 2016; Nadeau et al.,
2013); using extended psychoeducation about recognizing emotions (Nadeau et al., 2013); and
incorporating emotion regulation strategies (Farrell et al., 2016).
Perhaps most strikingly, a modification which is discussed in all of the case reports is increased
involvement of parents in therapy. It has been proposed that this is important to promote gen-
eralization of treatment gains (Lehmkuhl et al., 2008; Reaven & Hepburn, 2003). Furthermore,
it provides an opportunity to address parental accommodation of rituals (e.g., providing reas-
surance), which is more common in young people with ASD than typically developing youth
(Jassi et al., 2016) and is associated with poorer treatment outcomes (e.g., Russell et al., 2013).
The involvement of other systems, such as schools, has received less attention, with only one case
study describing a school liaison in order to facilitate ERP in the school environment (Lehmkuhl
et al., 2008).
It is of note that while all of these case studies describe positive responses to modified
CBT, only short-term outcome data are reported with the longest follow-up period being
4 months (Nadeau et al., 2013). It cannot be assumed that gains are maintained in the
longer term, particularly in this population, given the difficulty that individuals with ASD of-
ten have with generalization of principles (National Research Council, 2001). Furthermore,
the elevated levels of environmental stress that young people with ASD are likely to ex-
perience compared to typically developing youth could fuel anxiety and make them more
vulnerable to relapse. Also of note, the majority of the case reports describe young people
with mild to moderate OCD and only one reports an individual with severe OCD symptoms
(Farrell et al., 2016). Finally, in all cases the modified CBT package was the first attempt
at CBT. Given that the young people had not previously experienced a standard CBT ap-
proach, it is unclear whether the modifications reported were necessary or conferred any added
benefit.
In addition to the single case reports, one randomized controlled trial (RCT) has been
undertaken to evaluate modified CBT versus anxiety management for OCD in individuals
with ASD (Russell et al., 2013). While the majority of participants were adults, 28% (n =
14) were aged 14–18 years, four of whom were randomized to receive CBT. Modifications
to standard CBT included extended psychoeducation about emotions, particularly anxiety;
greater use of visual tools; use of special interests to convey psychological concepts; and a
more therapist-directed and structured approach. The study found that both modified CBT
and anxiety management were associated with significant reductions in OCD symptoms. Al-
though there was no statistically significant difference between the two groups at posttreatment,
there were more treatment responders in the CBT group compared to the anxiety management
group.
Taken together, the results of these single case reports and the RCT provide preliminary
evidence that modified CBT can be an effective treatment for OCD in young people with ASD,
at least in the short term. The current case study aims to contribute to this emerging evidence-
based by describing an adolescent with ASD and severe, treatment-resistant OCD who received
a course of modified CBT. Multi-informant outcome data are reported up to the 12-month
follow-up.
 Modified CBT for OCD in ASD 3

Presenting Problem and Client Description

Akshay (a pseudonym) was a 14-year-old Asian British boy who was referred to the National
and Specialist OCD and Related Disorders Clinic in the United Kingdom by a consultant
psychiatrist in the client’s local Child and Adolescent Mental Health Service (CAMHS) for
treatment of OCD. Akshay had experienced OCD since the age of 8, which emerged in the
context of a number of developmental difficulties. Akshay had a diagnosis of ASD and history
of Tourette syndrome. His IQ was in the average range as assessed by the Weschler Intelligence
Scale for Children Fourth Edition (Verbal Comprehension Index = 99; Perceptual Reasoning
Index = 94), but with significant impairments in Working Memory (Index score = 78) and
Processing Speed (Index score = 77). In addition, Akshay had a diagnosis of dyslexia. At the
time of referral he was enrolled in mainstream school with a Statement of Special Educational
Needs and a full-time learning support assistant.
Since the age of 9, Akshay’s OCD had resulted in marked functional impairment, including
periods of up to 6 months of absenteeism from school. His symptoms were highly distressing
and had led to repeated self-harm and a number of suicide attempts. At 13 years of age, he was
referred to an adolescent psychiatric inpatient unit but the admission had not proceeded due
to parental concerns. Several attempts had been made to treat Akshay’s OCD on an outpatient
basis through CAMHS. He had experienced two courses of standard ERP-based CBT as well as
trials of sertraline and fluvoxamine augmented with risperidone and subsequently aripiprazole,
but his symptoms remained refractory to these treatments.

Assessment and Case Formulation

Akshay and his parents attended a multidisciplinary assessment at the OCD Clinic, as part of
which he completed the Children’s Yale-Brown Obsessive-Compulsive Scale (CY-BOCS; Scahill,
Riddle, McSwiggin-Hardin, & Ort, 1997). He scored 16 on both the Obsessions and Compulsions
subscales, giving a total score of 32, which indicates severe symptoms. Akshay’s main obsessions
were a fear of contamination, a fear of harm coming to his parents, and excessive concern
about his iPad and Xbox. In relation to these obsessions, he was engaged almost constantly in
rituals and avoidance behaviors. This included avoiding being outside where possible, wearing
a hood up at all times when outside the home, avoiding going to the toilet away from home,
repeatedly seeking reassurance from his parents and phoning them throughout the day, mental
rituals involving counting, and extensively checking his Xbox and iPad.
Akshay had limited insight into the irrationality of his obsessions and compulsions. He would
sometimes acknowledge that his rituals were excessive but generally felt that his obsessional
worries represented realistic concerns. Akshay’s life had become highly restricted by his OCD.
He was delayed in getting to school every day due to checking rituals, which would take hours
to complete before leaving the home, and invariably he would have to go home after 2 or 3 hours
due to heightened anxiety and panic attacks. His anxiety at school was partly driven by his
OCD (e.g., contamination fears, fear of being away from his parents), but also by ASD-related
difficulties (e.g., sensitivity to noise, peer problems). Akshay struggled to go to the toilet outside
of home due to contamination worries and would hold urine for up to 12 hours and, as a result,
had occasionally been incontinent of urine. He did not engage in any social or leisure activities
outside of the home due to his fear of contamination.
His OCD symptoms were highly distressing. When an obsessional thought was triggered,
Akshay would become rapidly overwhelmed by escalating anxiety, and if he was unable to
ritualize, then he would respond by lashing out at nearby objects and people or by trying to
escaping the situation at any cost, including attempting to jump out of a first floor window on
one occasion. His parents reported having to modify their behaviors (e.g., keeping their dinner
plates separate from Akshay’s due to his contamination fears) to avoid provoking “melt downs.”
Akshay’s OCD was formulated as arising in the context of a biological predisposition. There
was a family history of anxiety and affective disorder and he had shown signs of having an anxious
temperament from an early age. The onset of his OCD appeared to have been precipitated by
the sudden and unexpected death of his great uncle with whom he was close. This led to
4 Journal of Clinical Psychology, September 2016

heightened anxiety that was further compounded by ongoing stress experienced at school in
relation to his ASD difficulties. His high level of anxiety, coupled with a tendency toward
repetitive behaviors and thoughts as part of his ASD profile, gave rise to obsessional thoughts
about harm coming to his parents, himself, and his belongings. His obsessional thoughts were
exacerbated by his cognitive rigidity and difficulty contemplating alternative perspectives, which
led to acute anxiety. Akshay’s poor emotional understanding meant that he found it difficult to
tolerate this distress, and so he attempted to neutralize it by performing compulsive behaviors
and avoiding anxiety-provoking situations.
Similarly, because his distress intolerance, his parents began to accommodate his compulsions
and avoidant behaviors, all of which served to maintain his obsessional thoughts and anxiety.
Previous attempts at CBT had not taken Akshay’s diagnosis of ASD into account, nor did
it address the systemic issues that were relevant, particularly parental accommodation and
stressors at school. It was therefore recommended that Akshay receive a further course of CBT
for OCD, one that involved his parents and tailored to his neurodevelopmental profile. It was
also recommended that the therapist work with his school in parallel to not only optimize
his educational development but also help minimize the environmental stresses that he was
experiencing in relation to his autism (e.g., hypersensitivity to noise, difficulty coping with
changes to the timetable), which would potentially perpetuate his anxiety and/or make him
vulnerable to relapse in the future.

Course of Treatment
Treatment adhered closely to an ERP-based CBT for OCD protocol that was developed for use
in young people and validated in randomized controlled trials (Mataix-Cols et al., 2014; Turner
et al., 2014). However, the treatment was adapted to account for features associated with ASD
(see Table 1). The third author (AJ), an experienced clinical psychologist delivered a total of
18 sessions over 4 months.

Sessions 1–4
The first four sessions took place at the clinic with both parents present and focused on psy-
choeducation about OCD and anxiety. Akshay initially presented as markedly anxious and was
tearful at times. He struggled to retain information and recall what had been discussed. In
session 1, the therapist discussed the etiology of Akshay’s OCD, emphasizing that it was no-
body’s fault. The therapist also introduced the idea of externalizing OCD and setting up the
notion that OCD was an enemy to be fought.
The key goal of session 2 was to help Akshay recognize anxiety and understand that anxiety is
a protective mechanism. To achieve this, the therapist discussed the physiological manifestations
of anxiety (e.g., increased heat rate, breathlessness) and talked about the function of anxiety
in terms of the “fight or flight response.” Akshay had found it very difficult to tolerate the
physiological arousal provoked by ERP tasks during previous courses of therapy and typically
responded by running out of the therapy room. Decatastrophizing physiological arousal and
reframing anxiety as “our body’s way of protecting itself” was therefore essential.
Sessions 3 and 4 focused on developing a 0–10 anxiety rating scale, using Doctor Who
characters. The therapist asked Akshay to arrange pictures of Doctor Who characters in order,
from who would frighten him the least (Doctor Who, rated as 0) to the most (Daleks, rated as
10). After completing the anxiety rating scale, the process of anxiety habituation was discussed
using an idiosyncratic example generated by Akshay, namely, attending the OCD Clinic. Using
the anxiety rating scale, the therapist asked Akshay how anxious he had been when he first
arrived at the clinic for the first time, and then what had happened to his anxiety over the course
of the appointment. This was repeated in relation to subsequent visits and anxiety ratings were
plotted on a graph. This highlighted two key points: that anxiety naturally reduces over time
and that with repeated practice, it extinguishes altogether.
The therapist asked Akshay if he could see how this related to fighting OCD. Akshay rec-
ognized that, in principle, if he confronted situations he was fearful of, then his anxiety would
 Modified CBT for OCD in ASD 5

Table 1
Summary of CBT Modifications in Relation to ASD Characteristics

Modification to standard CBT ASD characteristic and reason for modification

Format of CBT
Greater use of visual materials and worksheets Processing speed and working memory
impairments
Greater repetition of key psychological Working memory impairments
concepts
Short breaks throughout sessions, particularly Processing speed and working memory
psychoeducation sessions impairments
Sessions highly structured with agenda and Need for routine and predictability; working
timings written on whiteboard memory impairments
“Download time” at end of every session to Tangential conversations; difficulty establishing
discuss special interests therapeutic rapport
Content of CBT
Highly graded approach to ERP Difficulty tolerating distress
Directive approach to setting up ERP Cognitive rigidity
Extended psychoeducation about anxiety Poor emotional understanding
Use of Doctor Who anxiety rating scale Poor emotional understanding and difficulty
communicating emotions
Use of Doctor Who incentives Limited insight and motivation
Regular home-based sessions Difficulty generalizing
Systemic factors
Working with school Social communication difficulties and need for
routine resulting in ongoing stress as school
Developing social activities in parallel with Poor social functioning resulting in limited
CBT (e.g., attending weekly group at opportunity to confront certain obsessional
bookshop) fears
Parents leading ERP tasks in sessions Cognitive rigidity and limited insight
Weekly family meetings during follow-up Cognitive rigidity and limited insight

Note. ASD = autism spectrum disorders; ERP = exposure and response prevention; CBT = cognitive-
behavior therapy.

reduce, thereby setting up the rationale for ERP. Finally, the therapist began constructing a hi-
erarchy of compulsions with Akshay. This involved first listing his compulsions and then rating
how anxious he would be if he were to resist performing them. Akshay was asked to complete
his hierarchy for homework with help from his parents.

Modifications. To make sessions more predictable for Akshay and reduce his anxiety, the
agenda was written on a whiteboard at the beginning with specific timings. Each item was ticked
off once completed to help Akshay track progress. This was also beneficial with respect to his
impairment in working memory and helped him to stay on task. At the end of every session,
10 minutes was allocated for “download time,” during which Akshay could talk about a topic of
his choice such as Doctor Who. This served as a reward because Akshay enjoyed talking at length
about his special interests. It also enabled the therapist to interrupt Akshay if his conversation
became tangential during the main part of the session, and in such instances, Akshay would be
asked to wait until “download time.”
Akshay did not have a preexisting understanding of anxiety and helping him to recognize
anxiety was a lengthier process than it would be for a typically developing adolescent. For
example, rather than simply asking, “What does it feel like in your body when you get anxious?”
the therapist directly probed about the entire range of possible physical sensations using a
concrete examples and closed questions: “When you first arrived here today and you were very
anxious, did you notice your breathing getting faster or slower? Did you notice the temperature
in your body staying the same or getting hotter? Did you notice your heart rate going faster or
staying the same?”
6 Journal of Clinical Psychology, September 2016

Akshay’s special interest in Doctor Who was used to facilitate the process of externalizing
OCD and when rating anxiety as described above. Not only did this promote engagement,
but it also helped Akshay understand the key psychological concepts and provided a way of
communicating in relation to anxiety. For example, the Doctor Who characters provided a
concrete reference point to anchor subsequent anxiety ratings. When constructing the hierarchy,
rather than asking, “How anxious would you feel if you did not do [specific ritual]”, the therapist
asked, “If you didn’t do [specific ritual], would it be as bad as meeting a Dalek? Would it be
worse than meeting a Sea Devil?” Would it be similar to meeting The Yeti?”
A key challenge with Akshay was ensuring that he was processing and retaining new infor-
mation, which was a concern given his impaired processing speed and working memory. To
accommodate this, regular short breaks were structured into the sessions and key psychological
concepts were repeated. Visual materials and worksheets were used throughout so that Akshay
had written records of the sessions to refer back to. Furthermore, both parents attended sessions
enabling them to reiterate the content to Akshay during the week. It was also essential that they
had a shared understanding of OCD, anxiety, and treatment strategies so that they could act as
cotherapists later in treatment.
The culmination of these modifications meant that psychoeducation about OCD and anxiety
took longer than it would for a typically developing young person. For a typically developing
young person, psychoeducation is usually completed in two sessions (Mataix-Cols et al., 2014;
Turner et al., 2014), whereas for Akshay, it took four sessions.

Session 5–6
These sessions were conducted at Akshay’s home with both parents present. The sessions focused
on carrying out Akshay’s first ERP tasks. Tasks were chosen using the hierarchy, starting with
the lowest rated compulsion. The first task involved Akshay checking the disk tray on his Xbox
twice instead of three times and resisting checking the LED lights. He rated his anxiety as
being at “The Silence” level (i.e., 5/10) initially but subsided to “Sea Devils” level (i.e., 2/10)
after 5 minutes. The second task involved putting a dirty cup in the dishwasher and resisting
performing an extensive handwashing ritual. His anxiety increased to “Ice Warrior” level (i.e.,
7/10) but reduced to “Sea Devils” level (i.e., 2/10) after 5 minutes. Akshay felt pleased with his
achievement and was asked to repeat these tasks daily for homework. An incentive program was
set up whereby Akshay would earn Doctor Who stickers when he completed ERP tasks, and if
he gained a certain number of stickers, then he would earn a new Doctor Who DVD.

Modifications. Sessions were completed at home, rather than in the clinic, because of
concerns about Akshay being able to generalize from one setting to another. When planning
ERP tasks, each compulsion (e.g., checking Xbox) was broken down into several small steps
(e.g., checking the disk tray twice instead of three times, as opposed to not checking the disk
tray at all), and each exposure step was repeated multiple times before proceeding because
of Akshay’s difficulty tolerating anxiety. Because of Akshay’s cognitive rigidity and difficulty
thinking of alternative behaviors, the therapist took a more directive approach in setting up
ERP tasks than would normally be required with a typically developing young person. When
monitoring anxiety during the ERP tasks, the therapist observed that Akshay found it difficult
to identify most physiological symptoms of anxiety but that he was able to notice changes in
his breathing. Therefore, for future ERP tasks, the therapist asked him to monitor his breathing
in particular to help rate anxiety; this was facilitated by using a 1-minute “pause and notice”
rule whereby after an exposure, the therapist would ask Akshay to pause for a minute, notice his
breathing, and then generate an anxiety rating.
Concrete incentives were used to motivate Akshay to carry out ERP tasks. This is not a
standard part of the CBT protocol on which treatment was based and was introduced because
of Akshay’s wavering insight into the irrationality of his symptoms, and because Akshay’s life
had become so restricted he felt that he had no reason to try to fight OCD. In addition, to
promote motivation, the therapist ensured that ERP tasks were tangibly linked to Akshay’s
goals and therefore intrinsically rewarding (e.g., going to the park without his hood up to face
 Modified CBT for OCD in ASD 7

his fear of contamination), as opposed to being less directly linked to goals (e.g., touching the
bottom of his shoe to face his fear of contamination). As in previous sessions, Akshay’s parents
were present throughout these sessions so they could develop confidence in assisting Akshay
with ERP tasks.

Session 7–16
These sessions were conducted at Akshay’s home with both parents present. The focus every week
was on carrying out ERP tasks, as guided by the hierarchy, and encouraging Akshay to repeat
them for homework. By session 8, Akshay reported that he had realized that when confronting
feared situations his anxiety always subsided and with repeated practice it got easier. He also
reported recognizing that OCD was “playing tricks” and that “nothing bad happened.” This gave
him confidence to tackle more anxiety-provoking ERP tasks. Examples of further ERP tasks
included going to bed without checking his bedroom windows, going to the park and resisting
wearing his hood, and throwing items in the bin and resisting washing his hands afterwards. The
therapist also worked with the family to decrease reassurance by setting a daily target for the
number of reassuring comments provided, which was gradually reduced week by week. Other
parental accommodation of OCD was similarly reduced in a planned and gradual way.

Modifications. Akshay’s parents continued to be involved in all sessions. Initially they

observed tasks, but as sessions progressed, the therapist asked his parents to take an increasing
role in implementing ERP tasks; by session 16, his parents were able to set up ERP tasks and
carry them out with Akshay with minimal input from the therapist. This was done to increase
his parents’ competence and confidence in tackling Akshay’s symptoms, which was considered
to be crucial with respect to maintenance of gains and relapse prevention. Given that Akshay
was socially isolated, when it came to exposing him to his fear of contamination from people,
the therapist worked with Akshay and his family to build social activities. For example, they
identified a charity that organized regular events for young people with autism and a local comic
shop that ran a weekly group, which particularly appealed to Akshay because he had a special
interest in Marvel comics. Through these forums, Akshay had more motivation and opportunity
to overcome his obsessional fears of being in contact with people, as well as benefiting from
improved social functioning.

Session 17–18
Akshay and his parents attended these sessions in the clinic. He was continuing to make good
progress with fighting his OCD with the help of his parents. The sessions therefore focussed on
planning for the future and relapse prevention. The therapist helped Akshay and his parents
to identify remaining goals and ERP tasks that could be done to achieve them. They wrote a
blueprint including Akshay’s “golden rules” for fighting OCD. They also discussed potential
stressful life events that might arise in the future and that could trigger a relapse in symptoms,
and set out an action plan of what he would do if such a situation were to occur. The therapist
offered follow-up appointments 6 months and 12 months after the end of treatment to support
maintenance of gains.

Modifications. Modifications to relapse prevention included making more detailed and

concrete plans (e.g., of ERP tasks to continue to work on) and an increased parental role. The
therapist asked Akshay and his parents to have a weekly meeting at a fixed time and made a
concrete plan of what should be covered in this meeting, including reviewing progress in relation
to the weekly target, reviewing the reward chart, and setting a new target for the upcoming week.

School Intervention
School involvement was a crucial element of Akshay’s treatment. The therapist attended three
school meetings and had fortnightly contact with Akshay’s school support worker. The goals of
8 Journal of Clinical Psychology, September 2016

the school meetings were as follows: (a) set realistic expectations and recognize that Akshay’s
challenging behaviors were not a result of him being deliberately disruptive; (b) disentangle
OCD and ASD symptoms that were manifesting at school; and (c) subsequently establish how
these difficult behaviors should best be managed and supported in the school environment. To
aid this process, education about ASD and OCD was provided verbally and in written form (for
details on written information packs for schools, see Jassi et al., 2015).
Some problematic behaviors manifesting at school were clearly compulsions, such as Akshay
insisting on wearing his hood up at all times. In these instances, the school was informed that
this was an anxiety-driven behavior and that a goal of treatment was to gradually help Akshay
to overcome this habit. In the short-term, the school was asked to accommodate these behaviors
(e.g., allow Akshay to attend with his hood up), but the therapist emphasized that this was
a temporary arrangement and when Akshay began to tackle these compulsions in CBT, the
therapist asked school personnel to modify their expectations accordingly (e.g., encourage him
to keep his hood down).
Some difficulties at school were clearly ASD-related. For example, Akshay had difficulties
coping with last-minute changes to his timetable or teachers, and with eating school meals
because of the unpredictability of what food would be served. In relation to these behaviors, it
was agreed that Akshay would be informed of timetable changes with as much notice as possible
(e.g., first thing in the morning), and it was agreed that Akshay would bring a packed lunch to
school, which he could chose the night before.
Other behaviors that the school was concerned about appeared to be driven by both OCD
and ASD. For example, Akshay’s fear of crowds in school was due to noise sensitivity (ASD) but
also due to contamination fears if someone brushed past him (OCD). Given Akshay’s sensitivity
to noise, a permanent plan was put in place whereby Akshay could enter and leave the classroom
5 minutes after the other students. This plan was made in collaboration with Akshay and his
teachers. His contamination fears were addressed in CBT, thereby reducing his anxiety about
close proximity to peers.
The therapist had fortnightly contact with Akshay’s support worker at school via telephone
and e-mail to supply feedback about what was completed in sessions and update the school
management plan. The support worker also provided the therapist with up-to-date information
on what was challenging for Akshay in school so that it could be addressed in CBT where
possible.

Outcomes and Prognosis

Measures
A number of measures were administered at pretreatment, posttreatment, 6-month follow-up,
and 12-month follow-up. The CY-BOCS (Scahill et al., 1997) includes a symptom checklist
and 10 items assessing the severity of obsessions and compulsions (time spent, interference,
distress, resistance, and control), with total scores ranging from 0 to 40. The CY-BOCS shows
excellent psychometric properties with high inter-rater reliability, construct validity, conver-
gent and divergent validity, and treatment sensitivity (Scahill et al., 1997; Storch et al., 2004;
Wu et al., 2013).
The Children’s Obsessive-Compulsive Inventory (ChOCI) is a self-report questionnaire as-
sessing obsessive-compulsive symptoms in young people and has a parent version and child
version (Uher, Heyman, Turner, & Shafran, 2008). The instrument has good internal consis-
tency, criterion validity, and convergent validity (Shafran et al., 2003; Uher et al., 2008). Total
scores range from 0 to 48. The cut-offs for the child version of the ChOCI (ChOCI-C) are 12 to
23 = mild; 24 to 37 = moderate; and 38 to 48 = severe. The cut-offs for the parent-version
(ChOCI-P) are 16 to 27 = mild; 28 to 40 = moderate; and 41 to 48 = severe.
The Family Accommodation Scale-Parent Report (FAS; adapted from Calvocoressi et al.,
1995) is a 13-item questionnaire that measures the degree to which parents modify their own
behavior to accommodate their child’s OCD symptoms and the level of distress or impairment
that the family experiences as a result. The FAS demonstrates a stable factor structure, excellent
 Modified CBT for OCD in ASD 9

Table 2
Scores on Measures Over the Course of Treatment and Follow-Up

Pretreatment Posttreatment 6-month F/U 12-month F/U

CY-BOCS total 32 16 13 16
Obsessions 16 9 7 7
Compulsions 16 7 6 9
ChOCI-P 41 33 24 30
Obsessions 20 19 16 18
Compulsions 21 16 6 12
ChOCI-C 43 24 24 30
Obsessions 22 12 14 18
Compulsions 21 12 10 12
FAS-M 24 7 7 8
FAS-F 24 8 8 3

Note. F/U = follow-up; CY-BOCS = Children’s Yale-Brown Obsessive-Compulsive Scale; ChOCI-P =

parent-completed Children’s Obsessive-Compulsive Inventory; ChOCI-C = child-completed Children’s
Obsessive-Compulsive Inventory FAS-M = mother-completed Family Accommodation Scale; FAS-F =
father-completed Family Accommodation Scale.

internal consistency, good convergent validity, and adequate discriminant validity (Flessner
et al., 2010). Total scores range from 0 to 52, and scores of 13 or greater have been taken as
indicating clinically meaningful family accommodation (Merlo et al., 2009). Akshay’s mother
and father completed the FAS separately.

Results
Scores on all outcomes measures are presented in Table 2. Akshay’s CY-BOCS score declined
from 32 at pretreatment (severe range) to 16 at posttreatment (mild range) and gains were
maintained over a 12-month period. This 50% reduction in CY-BOCS score is indicative of a
treatment response (Mataix-Cols, Fernandez de la Cruz et al., 2016; Skarphedinsson, De Nadai,
Storch, Lewin, & Ivarsson, 2016). Akshay’s improvement was also reflected in the parent-
and self-report ratings of OCD symptoms, with his scores on the ChOCI-C and ChOCI-P
decreasing from the severe range at pretreatment to the moderate range at posttreatment
and remaining relatively stable over the following 12 months. Of note, scores on both the
ChOCI-C and the ChOCI-P indicated a greater reduction in compulsions than obsessions after
treatment.
Finally, the degree to which Akshay’s parents were accommodating his OCD symptoms
reduced markedly over treatment, as indicated by a reduction in both mother- and father-
completed FAS scores. By the end of treatment, neither parent reported clinically meaningful
levels of accommodation, and these gains were maintained over the 12-month follow-up.
In terms of daily functioning, there was a significant improvement in Akshay’s school atten-
dance. By the end of treatment, he was attending school daily and staying for the majority of
the day. His social functioning improved with him going out every weekend and making a small
group of friends. Furthermore, family life improved, with parents reporting that they were no
longer having to “tread on eggshells” for fear of disrupting a ritual or triggering an obsession,
and the frequency of Akshay’s temper outbursts decreased.
Given that Akshay and his parents had a good understanding of CBT principles and that
they had been successful in maintaining treatment gains over a 12-month period, his clinical
prognosis was considered to be relatively good. However, the fact that Akshay had not achieved
a full remission from OCD made him vulnerable to a recurrence in symptoms or development
of new OCD symptoms (Eisen et al., 2013). This was discussed with the family and used as an
opportunity to emphasize the importance of continuing to implement CBT strategies to tackle
residual symptoms while remaining vigilant to new ones.
10 Journal of Clinical Psychology, September 2016

Clinical Practices and Summary

This case describes the treatment of severe OCD with CBT that was modified to account for
complications associated with comorbid ASD. Outcomes were largely positive, with significant
reductions in OCD symptoms evident on clinician-, child-, and parent-rated measures. In line
with the reduction in OCD symptoms, there were notable improvements in Akshay’s overall
functioning in social and educational domains. Furthermore, there was a significant reduction
in parental accommodation of OCD and his parents reported improvements in their quality of
life. This is the first pediatric case study to report long-term outcomes following CBT for OCD
in ASD. Encouragingly, the outcomes reported here suggest that gains can be maintained in the
longer term (up to the 12-month follow-up). This finding is consistent with the results of the
only RCT to date that has evaluated modified CBT for OCD in individuals (primarily adults)
with ASD (Russell et al., 2013).
Despite the striking treatment gains reported here, it is of note that Akshay did not achieve a
full remission from his OCD and significant symptoms persisted after treatment and throughout
the follow-up period. This may reflect the severity of Akshay’s OCD at pretreatment. Indeed,
severity of OCD is generally associated with poorer CBT response (Ginsburg, Kingery, Drake, &
Grados, 2008). Scores on both child- and parent-report OCD measures indicated that Akshay’s
obsessions in particular persisted. This could be a reflection of the nature of the treatment,
which focused primarily on reducing compulsions through graded ERP; cognitive techniques
were not used to directly tackle obsessions. In typically developing children, graded ERP can
lead to cognitive change because it provides an opportunity for reappraisal of feared outcomes.
For example, through repeated exposure to “dirty” objects, a child may learn that the risk of
getting ill is much lower than he or she had feared. Although Akshay reported reappraisal of
some cognitions following ERP, it is possible that this process happens less readily in young
people with ASD due to cognitive rigidity and difficulty generalizing.
The CBT modifications used in this case included a range of techniques that have previously
been described in the treatment of OCD in young people with ASD, such as close involvement
of parents and the use of rewards and special interests. However, the current case also highlights
a number of strategies that have been less well described previously. First, psychoeducation
about anxiety was extensive and comprised the majority of the first four sessions. This was
crucial in order for Akshay to understand the main principle on which ERP is based, namely,
anxiety habituation, and for him to be able to understand and communicate his levels of anxiety.
Second, the majority of ERP sessions were conducted at Akshay’s home. Only one previous
case report included home-based sessions (Farrell et al., 2016). In Akshay’s case, conducting
ERP at home was considered to be vital to overcome problems with generalization. Third, an
important component of the treatment described here was working with Akshay’s school. This
was essential to reduce the environmental stressors that Akshay was experiencing at school,
which were fuelling his anxiety and formulated as being a maintenance factor in his OCD.
It is interesting to note that Akshay had previously failed to respond to standard packages
of CBT for OCD, yet showed a positive response to the modified CBT described here. This
supports the notion that CBT modifications are beneficial or even essential for young people
with ASD. However, while this is a plausible interpretation, a number of other factors could
also account for Akshay being more responsive to modified CBT than standard CBT, including
him being older and more insightful, the involvement of a specialist therapist, and nonspecific
factors associated with attending a specialist service.
It is important to recognize that the CBT modifications described here served to enhance
a standard evidence-based ERP protocol. The therapist was careful not to “dilute” the active
ingredients in therapy (i.e., ERP), but instead modified their delivery to optimize engagement
with the key components of treatment. When working with complex cases, there can be a temp-
tation to veer away from standard evidenced packages in favor of delivering more complicated
treatments. This clearly runs the risk of resulting in ineffective, or even harmful, treatment.
Whittington and Grey (2014) proposed a framework for working with complex cases in which
therapists should be theoretically “tight” but technically “loose,” meaning that therapists should
adhere closely to the principles underlying treatment (e.g., anxiety habituation and ERP) while
 Modified CBT for OCD in ASD 11

being flexible in the delivery and specific techniques used (e.g., carrying out ERP in a home set-
ting and using a modified anxiety ratings scale to monitor response). This framework highlights
the importance of personalizing the delivery of treatment, which is particularly pertinent in
ASD given its heterogeneity. In this vein, the CBT modifications described here and in previous
case reports will not necessarily be helpful to all young people with ASD and OCD, and clini-
cians should carefully tailor treatment to the behavioral and neuropsychological profile of their
client.

Conclusion
In summary, this case demonstrates that modified CBT can be an effective treatment for OCD
in a young person with ASD, even when their OCD is severe and treatment resistant, and gains
can be maintained in the longer term.

Selected References and Recommended Readings

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