Cognitive-behavioral treatment of obsessive- compulsive disorder in a ...

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Cognitive-behavioral treatment of obsessivecompulsive disorder in a child with Asperger syndrome

autism © 2003 SAGE Publications and The National Autistic Society Vol 7(2) 145–164; 032483 1362-3613(200306)7:2

A case report J U DY R E AV E N

University of Colorado Health Sciences Center, USA

SUSAN HEPBURN

University of Colorado Health Sciences Center, USA

This case report outlines the cognitive-behavioral treatment of obsessive-compulsive disorder in a 7-year-old female with Asperger syndrome. Interventions were based upon the work of March and Mulle and were adapted in light of the patient’s cognitive, social, and linguistic characteristics. Obsessive-compulsive symptoms improved markedly after approximately 6 months of treatment. Issues regarding symptom presentation, assessment, and treatment of a dually diagnosed patient are discussed.

A B S T R AC T

ADDRESS Correspondence should be addressed to: J U D Y R E A V E N, PhD, Department of Pediatrics, University of Colorado Health Sciences Center, 4200 E. 9th Avenue, Box C-234, Denver, Colorado 80262-0234, USA. e-mail: [email protected]

K E Y WO R D S

Asperger syndrome; case study; cognitivebehavioral treatment; obsessivecompulsive disorder

Introduction Obsessive-compulsive disorder (OCD) is an anxiety disorder characterized by intrusive thoughts, images, or worries (i.e. obsessions) and/or repetitive, nonfunctional behaviors that emerge in an effort to quell anxiety (i.e. compulsions) (American Psychiatric Association, 1994). Symptoms are time-consuming, cause considerable functional impairment, and often contribute to increased social isolation, persistent distress, and a progressive narrowing of behavior and interests. The lifetime prevalence rate of OCD is estimated at 2.5 percent (Karno et al., 1988). Although average age of onset has typically been thought to occur in early adulthood (Minichiello et al., 1990), there is increasing evidence that OCD has a bimodal onset, with age of onset in children at 10–101⁄2; years, and a second age of onset for adults in the early 20s (Geller, 2001). Recently more attention has been directed toward the identification and treatment of OCD symptoms in 145

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7(2) children and adolescents (Penn et al., 1992; Rapoport and Inoff-Germain, 2000). In 1999, the Journal of the Academy of Child and Adolescent Psychiatry published a set of treatment parameters for OCD in children and adolescents and recommended a combination of psychopharmacological intervention and cognitive-behavioral therapy (CBT). Treatment protocols incorporating modifications of CBT strategies for children have been developed and are currently available to clinicians (Francis and Gragg, 1997; March and Mulle, 1996; 1998; Piacentini, 1999). Few empirical studies on treatment outcomes in children exist in the literature, although significant benefits of the cognitive-behavioral protocol by March and Mulle (1998) have been reported. More extensive treatment outcome studies are currently under way (Rapoport and Inoff-Germain, 2000). There is a need for more controlled studies of treatment components (Moore and Carr, 2000) and for more in-depth case studies of CBT treatment in children (Wever and Rey, 1997). In addition to the recent efforts to study OCD in children, researchers are also discovering that OCD symptoms tend to co-occur with other neurodevelopmental diagnoses, such as attention deficit hyperactivity disorder, Tourette’s syndrome (Kerbeshian and Burd, 1995), Asperger syndrome (Szatmari, 1998; Thomsen, 1995), and autism (Nilsson et al., 1999). Several studies report that up to 70 percent of children with OCD have at least one comorbid disorder (Geller et al., 1998). Diagnosing OCD in children or adolescents with an autistic spectrum disorder is particularly challenging because of the difficulty teasing apart the stereotyped and rigid behaviors from the presence of clear obsessions and compulsions. Baron-Cohen (1990) suggested that the terms ‘obsession’ and ‘compulsion’ should be avoided in reference to persons with autism because of the difficulty in establishing that these symptoms are egodystonic to the individual. McDougle and colleagues (1995) conducted a casecontrol study comparing obsessive and compulsive symptoms in adults with OCD and adults with autism, and found significant differences in the form of repetitive activities and the content of obsessive thoughts. Adults with autism were more likely to exhibit repetitive ordering, hoarding, telling/asking, and repeated touching, and their obsessive thoughts were less likely to be aggressive, sexual, or religious in nature. Adults with OCD were more likely to engage in cleaning, checking, and counting behaviors. Although for most individuals with ASD there is a qualitative distinction between repetitive activities and obsessive-compulsive disorder, there is also evidence that individuals with an autism spectrum disorder are particularly vulnerable to developing additional diagnoses, especially anxiety disorders, such as OCD (Lainhart and Folstein, 1994; Tantam, 2000; Tonge et al., 1999). In fact, an epidemiological study in the early 1990s AU T I S M

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R E AV E N & H E P B U R N : C O G N I T I V E - B E H AV I O R A L T R E AT M E N T

suggested that approximately 1 in 68 persons with an autistic spectrum disorder also meets criteria for an additional diagnosis of OCD (Ghaziuddin et al., 1994). Recent etiological studies suggest three complementary hypotheses for the comorbidity of OCD and autistic spectrum disorders. First, there is the theory of 5-HT disturbance in OCD and autism (Apter et al., 1991). A correlational study of blood serotonin found elevated levels in persons with autism relative to their exhibition of OCD symptoms (Yuwiler et al., 1992). The use of serotonin-reuptake response inhibitors aimed at symptoms of OCD in persons with autism have shown promising results (Cook and Leventhal, 1995; Tsai, 1999); however, more systematic studies of psychopharmacological treatment of OCD in persons with autism and mental retardation are needed (Aman et al., 1999). Second, neuroimaging studies suggest the presence of abnormalities in the frontostriatal system, specifically the orbitofrontal cortex and the caudate nucleus, in children with OCD and in children with autism (Santosh, 2000). These structures in the frontal lobe of the brain have been theoretically linked with the capacity for adaptability in humans, which is essential for the broadening of behavioral repertoires (Bradshaw and Sheppard, 2000). These structures have also been linked with executive function abilities (Tallis, 1997), which have been hypothesized to be impaired in both autism and OCD (Baron-Cohen and Moriarty, 1995; Ozonoff, 1998). Finally, there is evidence for a genetic link between autism and OCD, with the possibility of overlapping symptomology in family members of affected persons (Berg et al., 1994). Given the comorbidity of OCD and autistic spectrum disorders, it is surprising that so few treatment studies of dually diagnosed persons exist in the literature. We found several studies illustrating the effects of psychopharmacological treatment on adults with OCD and autism (Alexander, 1997; Harvey and Cooray, 1996; McDougle et al., 1990; 2000; Mehlinger et al., 1990; Nelson and Pribor, 1993) and one study of psychopharmacological intervention in a child with Asperger syndrome and OCD (Storch, 1999). Studies of cognitive-behavioral therapies for anxiety or OCD in persons with an autistic spectrum disorder are rare but promising. Lord (1995) documented the successful treatment of obsessive symptoms in an adolescent male with autism utilizing traditional cognitive-behavioral strategies. Hare (1997) described the use of cognitive-behavioral therapy to treat anxiety and depression in a 26-year-old dually diagnosed male. We are not aware of any studies of cognitive-behavioral treatment of OCD in children with an autistic spectrum disorder. In this article, we will present a case report of the cognitive-behavioral treatment of OCD in a 7-year-old girl with Asperger syndrome. Interventions were based upon the work of March and Mulle (1998) as well as 147

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7(2) other authors (Schwartz, 1996) and were adapted to account for the patient’s cognitive, social, and linguistic characteristics. Description of the clinical presentation of symptoms, assessment and treatment strategies, outcome data, and discussion of the findings will be provided. AU T I S M

Diagnostic formulation Y.R. was a female aged 7 years 8 months, referred initially for a psychological evaluation because of her long-standing problems with social relationships. She was described as ‘extremely bright’ and had a previous diagnosis of attention deficit hyperactivity disorder, for which she was prescribed dexedrine. She developed facial tics and rapid eye blinking, which may have been related to the stimulant medication. Her psychiatrist prescribed risperidone to target the tics, and her parents were concerned about the appropriateness of the ADHD diagnosis and the medical treatment. Her parents requested an assessment at the specialty clinics at the University of Colorado Health Sciences Center to clarify her diagnostic picture. A multidisciplinary team, comprising a psychologist (S.H.), a psychiatrist, a speech pathologist, a developmental pediatrician, and an occupational therapist, participated in the 2 day evaluation. Behavioral observations during the evaluation indicated that Y.R. presented as a serious child who was anxious, active, and perfectionistic. Her speech was very formal, with little variability in her intonation. Her social reciprocity was limited and her affect was constricted. She smiled rarely during the evaluation; however, her affect brightened considerably when discussing her special interests in evolution and birds. She offered many facts about these topics throughout her interactions with the examiner, and sometimes talked about the same topics for long periods. She also expressed fears about a number of things throughout the session, including harmless objects (e.g. frogs). Her use of gestures was unusual: either she did not use them at all, or she used them in an exaggerated manner. Facial tics and rapid eye blinking were evident. The examiner administered the Autism Diagnostic Interview–Revised (Lord et al., 1995) to Y.R.’s parents. Y.R. met criteria for an autistic spectrum disorder. Specific symptoms included a lack of social reciprocity, limited peer interaction, difficulties with pragmatic (or social) communication skills, poor social understanding, circumscribed interests, and difficulty adapting to changes and transitions. Intellectual assessment confirmed that Y.R. was an exceptionally bright youngster, with her measured IQ falling in the highly gifted range (135–145) according to the results of the Stanford–Binet Fourth Edition (Thorndike et al., 1986). Her expressive and receptive language skills were very well developed, although her social use 148

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of language was limited. Early developmental history indicated that milestones were met within normal limits with no delays in motor and language functioning. Y.R.’s early history, as well as her functioning during the assessment, was consistent with a diagnosis of Asperger syndrome. The clinicians recommended further assessment and treatment for obsessive-compulsive symptoms, particularly related to her exaggerated fears and ‘phases’ (her word for periods of intense anxiety). The primary clinical hypothesis was that Y.R.’s anxiety symptoms had been misinterpreted as manifestations of attention deficit disorder, and that treatment ought to address the underlying anxiety and not the overt distractibility.

Assessment of OCD Y.R. returned to the clinic several weeks later for further assessment and treatment of her anxiety symptoms. Y.R. and her mother reported the presence of ‘urges and phases’ that clearly interfered with her day-to-day functioning. These ‘urges and phases’ were described as worries or obsessions that included contamination worries, aggressive worries (worries that she will harm herself or someone else), and a strong ‘need to know’ obsession. Y.R. expressed fears that she would ‘pierce her heart with a knife’, worried that she would catch a disease that she had heard someone talk about, and worried that her body was changing and that she was turning into some other person (e.g. the Wicked Witch of the West). Compulsive behaviors were present as well, primarily in the form of hoarding, periodic bursts of frequent handwashing, and a repetitive and constant need to ask questions. In her efforts to gain information, Y.R. would read all of the text on all posted signs that she noticed, and would constantly ask questions of the adults around her, interrupting conversations to ask for clarification of the words and concepts she did not understand. Although many children can be secretive about their symptoms (King et al., 1998), this was not the case with Y.R. Everyone in her immediate family knew that she experienced ‘urges and phases’, even her 4-year-old sister. To gather more information about Y.R.’s obsessive and compulsive behaviors, the treating clinician (J.R.) administered the Children’s Yale–Brown Obsessive Compulsive Scale (CY–BOCS: Goodman et al., 1986) to Y.R. and her mother in a joint parent–child interview. The CY–BOCS is a semistructured interview designed to rate the severity and pervasiveness of obsessive and compulsive symptoms in children and youth, ages 6–17. The CY–BOCS yields a target symptom list (a list of the child’s most severe obsessions and compulsions) and a severity rating (an index of the amount of impairment caused by the symptoms, including the amount of time spent, and the amount of distress experienced). Y.R. obtained a severity 149

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7(2) score of 23, reflecting moderate OCD symptoms. Y.R.’s obsessions and compulsions were time-consuming, interfered with day-to-day functioning, and were coupled with much subjective distress. AU T I S M

Intervention The following is a detailed outline of the cognitive-behavioral treatment approach (CBT) used with Y.R. to decrease the presence of OCD symptoms. The CBT protocol for children and adolescents by March and Mulle (1998) provided a general framework for Y.R.’s treatment, although the work of other authors was incorporated into the treatment package (Schwartz, 1996). However, because none of the available CBT programs for children and adolescents specifically address the utility of their approaches for persons with Asperger syndrome, the treatment outline presented below will include an abbreviated overview of the CBT protocol, coupled with specific modifications for children with ASD. It is important to note that the focus of treatment was to reduce Y.R.’s OCD symptoms, which did not include her preoccupation with her special interests (e.g. evolution, birds). These special interests were viewed as characteristic of Asperger syndrome, and not symptoms of OCD, primarily because they did not cause her or her family distress, and did not interfere significantly with her daily life. In fact, these interests were highly valued by Y.R.’s family, in large part because of the intellectual nature of these interests and pursuits, and also because they provided a vehicle for social engagement with Y.R. It is also important to note that Y.R. was 7 years old at the initiation of treatment, which is quite young for cognitive-behavioral techniques (March and Mulle, 1998). However, Y.R.’s intellectual orientation seemed well suited to cognitive-behavioral interventions. Thus, the protocol was attempted with several modifications for her developmental level and dual diagnosis. Y.R. was seen in treatment for a total of 14 sessions by the treating clinician (J.R.) over a period of 51⁄2 months. However, in the third month of treatment, Y.R. was also prescribed medication for anxiety and OCD symptoms (sertraline, 10 mg). Therefore, we cannot determine the unique contributions of psychotherapy alone or medication alone, or the effects of the combination of treatments on the outcomes Y.R. experienced.

Step 1: Introduction to OCD – establishing a neurobehavioral framework Traditional elements of CBT In the initial sessions, the therapist (J.R.) met with Y.R. and her mother to redefine her ‘urges and phases’ as 150

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symptoms of OCD. The etiology of her OCD symptoms was explained in the context of neurological factors that have conspired to predispose her to experience many worries and compulsive behaviors. The therapist also emphasized that the OCD symptoms Y.R. experienced were ‘not her fault’. The therapist introduced the idea of externalizing the OCD symptoms, as March and Mulle (1998) and others (White and Epston, 1990) have suggested. To this end, OCD was described to Y.R. as a set of symptoms that were distinct from her as a person and did not affect her ability to access her other strengths and abilities. The metaphor of winning and losing was introduced in this initial phase. OCD was referred to as something to ‘beat’, and the image of Y.R., the therapist, and her parents, all on the same team fighting against OCD, was highlighted. Modifications March and Mulle (1998) usually recommend treating the child directly, without involving the parents in the treatment sessions, in order to disentangle the parents from the OCD symptoms and the rituals that they inadvertently perform. In the March and Mulle model, parents are usually involved as coaches, not direct interventionists. In this case, Y.R.’s parents were highly involved in therapy from the beginning, attending every session, and maintaining active involvement throughout treatment. This was necessary to aid generalization of techniques from the therapy sessions to daily life. Although many children like to give OCD a nickname, such as ‘germy’ (March and Mulle, 1998), Y.R. preferred to refer to her symptoms as ‘OCD’. She also preferred using the formal diagnostic language, as opposed to words such as ‘habits’ or ‘worries’. Accommodating her literal style was important for eliciting her participation in the intervention. Visual structure was used quite liberally throughout the entire treatment course and, in fact, became instrumental in reducing OCD symptomology. For example, a written schedule was used in the initial sessions in order to help Y.R. stay focused on the tasks and allow her parents and therapist to talk without interruption. Additionally, Y.R. was asked to draw what her OCD symptoms would look like, and numerous lists were made throughout treatment to explain visually what had been discussed verbally (i.e. ‘OCD is . . .’ and ‘OCD is not . . .’ became lists).

Step 2: Mapping OCD symptoms Traditional elements of CBT In this phase of treatment, the therapist and Y.R. began to map her OCD symptoms (March and Mulle, 1998). ‘Mapping’ involves using drawings or other representations to cultivate some awareness about how much time the individual spends engaging in OCD behaviors. In her mapping of OCD, Y.R. drew two sets of diagrams 151

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7(2) using circles to represent herself and OCD. In the first set she drew two circles reflecting herself in comparison to how much of her time was spent doing OCD behaviors, and in the second set she drew herself in comparison to OCD at the time when she would be ready to end treatment (see Figure 1). Y.R. and her family were also asked to record when OCD occurred at home and who ‘won’ (OCD or Y.R.). This also helped to increase Y.R.’s selfawareness about the amount of time she spent engaging in OCD behaviors as well as what strategies she was already using to ‘beat’ OCD. AU T I S M

Current functioning at the start of treatment

Goal for treatment (set at the start of treatment)

Figure 1

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Mapping the OCD symptoms before treatment

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Modifications Given Y.R.’s preference for written material, score sheets were used to keep track of who ‘won’ at the times OCD symptoms occurred. Overall, more visual supports were utilized to clarify the goals and processes of treatment.

Step 3: Establishing a hierarchy Traditional CBT The next phase of treatment involved establishing a hierarchy of OCD behaviors, arranged in order from least to most distressing to Y.R. Treatment focuses upon intervening with the behaviors on the hierarchy that fall in a ‘work zone’, which is defined as the area of the hierarchy where the child has some emerging, but not consistent, success in ‘beating’ OCD (March and Mulle, 1998). To help Y.R. develop a hierarchy of OCD behaviors, the therapist introduced the concept of a fear thermometer (March and Mulle, 1998), which Y.R. renamed the ‘worry machine’. The therapist asked Y.R. to assign worry ratings to each of her identified OCD behaviors, which she did with little difficulty. Modifications Y.R. demonstrated firm preferences about the names of things and it was important to incorporate her ideas into treatment (for example, calling the fear thermometer a ‘worry machine’). Y.R. also devised her own rating system for the symptom hierarchy, which appeared to enhance the salience of the system for her. At this stage, treatment was very similar to a child with OCD symptoms (without Asperger syndrome), with the exception of adopting Y.R.’s somewhat unusual ideas and interests into treatment, which was critical to recruit and sustain her interest.

Step 4: Exposure/response prevention (E/RP) Traditional elements of CBT Now that a hierarchy had been established, exposure and response prevention techniques could be applied to teach Y.R. how to beat her OCD. ‘Exposure’ refers to the principle that confronting a feared stimulus will trigger anxiety and the need to engage in compulsive behaviors, while ‘response prevention’ is the blocking of the ritual during periods of exposure. Avoidance behaviors are minimized and anxiety decreases over time. Y.R., her parents, and her therapist generated a list of tools that she could use to ‘beat’ OCD. These tools consisted of several strategies Y.R. could access to manage her anxiety while she stopped herself from engaging in obsessive or compulsive behaviors. Examples of the tools were: labeling her anxiety as OCD, telling herself she can beat OCD, distracting herself by talking to others about a variety of topics, or distracting herself by thinking about something else. 153

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7(2) Y.R. began by selecting an OCD behavior or symptom that she had rated relatively low on her ‘worry machine’, although within her ‘work zone’. Both contrived as well as uncontrived exposure situations (arranged exposure situations versus spontaneously occurring exposure situations) occurred during the week. Y.R. was instructed to practice using her ‘tools’ during the periods of exposure. For example, Y.R. and her parents selected her need to read entire signs through to completion as the first OCD symptom to tackle. This compulsive reading was conceptualized as an extension of a ‘need to know’ obsession. Initial exposure situations were created in and around the therapist’s office as Y.R. faced numerous signs in the hallways of the building. When Y.R. saw the signs she did not engage in her ritualized behavior of compulsively reading each and every sign through to completion. She used cognitive statements at these moments that included labeling her anxiety as OCD (Schwartz, 1996), saying to herself, ‘This is OCD, I can beat it’, and ‘I’ll do something else – think about other things, talk to someone else – while I’m waiting for OCD to go away’. Y.R. then talked to her parents or therapist as she waited for the anxiety to subside. During the E/RP practice, Y.R. was able to successfully reduce her compulsive sign-reading behavior and she expressed pride and enthusiasm about her new skills. AU T I S M

Modifications Visual strategies proved very helpful in this phase of treatment. When the therapist introduced the concept of tools, Y.R. drew a toolbox, complete with cardboard cutouts of tools, labeled with various cognitive strategies that she would employ when experiencing anxiety related to OCD. Y.R. practiced implementing her ‘tools’ by having them visually accessible to her so that she could pull them out when necessary. Using narratives to increase social understanding was also a helpful modification to the traditional CBT protocol. These techniques are described in Carol Gray’s (1993) work on social stories and comic strip conversations and can be applied to various educational and therapeutic interventions. In an effort to manage her compulsive ‘need to know’ (which manifested in constant interruptions into other people’s conversations, intolerance of her mother talking on the telephone, and reading her parent’s e-mail without permission), Y.R. wrote her own social story explaining to herself the social reasons for allowing other people to have private conversations. The title of Y.R.’s story was ‘None of My Business’ (see Table 1).

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Table 1

Social story written by Y.R.: ‘None of My Business’ (all spelling original)

‘Somtimes I want to know something. Somtimes it is none of my business. Somtimes I really want to know. This makes me feel bad. It can happen when • • • • •

I can’t listen in on a conversation I ask a question and it isn’t my business I see Mom on the telephone I want to know what people chat [about] I want to know someone’s problem.

When I feel bad about it I have compultions. • • • • •

I might ask a question I might ask why something isn’t my business I might start crying I might pester Or I might try to listen.

Somtimes I need help coping with it. I could • • • • • • •

Say this is OCD Write a social story Distract myself and try to forget it Do relaxation exercises Go far away from private conversations and keep myself ther Make it wait Set a progress chart and reward myself.

Step 5: Intervening with other behaviors on the stimulus hierarchy Traditional CBT Once Y.R. was able successfully to use E/RP in combination with her self-generated cognitive strategies to decrease the first OCD symptom, additional behaviors from the stimulus hierarchy were introduced one at a time. Y.R. used E/RP to reduce her hoarding, contamination fears, and need to know obsessions and compulsions. For each symptom, exposure situations were either arranged or occurred naturally in her environment, and Y.R. was encouraged to use her tools to effectively handle her anxiety and stop herself from engaging in the ritualistic behaviors. Modifications Overall, Y.R. adopted a scientific approach to addressing her OCD symptoms. She was persistent in her efforts to ‘beat OCD’ and seemed motivated to eliminate the discomfort of her ‘urges and phases’. However, Y.R. was less intrinsically motivated to decrease her obsessions and compulsions in order to faciliate better social relationships with others. Decreasing symptoms appeared to be a goal sufficient within itself, and the social rewards of less intrusive behavior did not seem to contribute to her motivation. 155

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7(2)

Outcomes The CY–BOCS was readministered to Y.R. and her mother near the end of the treatment course. She obtained a score of 8, compared with her initial score of 23, a 65 percent decrease in symptoms over a 14 week period. A comparison of Y.R.’s own self-generated ratings using the ‘worry machine’, before and after intervention, revealed decreases across all symptoms. Y.R. was also asked to draw a diagram of comparison circles, just as she had done several months earlier. Her new drawing is re-created in Figure 2 – indicating that at the end of the 14 week treatment period her drawing of herself in comparison to OCD was substantially larger than her original drawing. By the end of the treatment period, most of Y.R.’s original OCD symptoms had remitted. Y.R. was able to monitor her own progress and had developed an effective set of self-coaching techniques that she could readily apply to potentially triggering situations or events. For example, Y.R. and her family were planning a lengthy vacation, and the therapist asked her how she would handle her OCD symptoms on the trip. She replied,‘I’m not going to pack my OCD.’ To prevent relapse and maintain gains in functioning, a series of follow-up sessions were scheduled with Y.R. and her family. The follow-up sessions were scheduled between 3 and 4 weeks apart. During the sessions Y.R. and her mother reviewed whether or not OCD symptoms were interfering with her day-to-day functioning. Y.R. was reminded of the tools and other cognitive strategies we had developed over the past several months, and she was encouraged to implement them at home and at school. Because Y.R.’s OCD symptoms were well controlled, the focus of the sessions was less on OCD and much more centered around other topics, such as school functioning.

Figure 2

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Mapping the OCD symptoms after treatment

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Discussion The results of this case report suggest that CBT can be an effective treatment for decreasing OCD symptoms in children with an autistic spectrum disorder, provided that appropriate modifications to the treatment protocol have been made. Y.R. began treatment with moderate OCD symptoms, and by the end of the 14 week treatment period the symptoms had decreased to manageable levels. Although there are limitations in generalizability given the single-subject design of this case report, we hope that the extremely positive findings cited here will inspire other clinicians working with children with autism spectrum disorders to consider the possibility of a cooccurring diagnosis of OCD. Once accurate diagnoses have been obtained, the CBT treatment approaches outlined here can be implemented as part of a total intervention package. Future directions should include continued exploration of the assessment and treatment processes with children who have both autism spectrum disorders and obsessive-compulsive disorder. As with any single-subject case report, the findings in this study are limited in terms of generalizability. The extent to which characteristics of this young girl, her family, or her environment contributed to the outcomes described above is unclear. It is also impossible to determine the relative contributions of CBT and medication in reducing the OCD symptoms. However, like other case reports, it is our hope that this study will lead to further discussion of diagnosis and treatment of OCD in a child with an autistic spectrum disorder. First, it is important to highlight that the clinical presentation of OCD symptoms in this young girl with Asperger syndrome clearly met DSM-IV criteria for OCD. The content and form of her obsessions and compulsions were similar to those reported for other children with OCD who do not have an autistic spectrum disorder. Y.R. was acutely aware of her OCD behaviors, clearly experienced extreme distress, and frequently communicated her desire to rid herself of her ‘urges and phases’. In our view, her motivation to ‘beat’ OCD, fueled by the egodystonic experience of her symptoms, was crucial to the success of the treatment. In addition, she was capable of the self-reflection and self-monitoring skills required by the CBT approach, and fully understood the use of the broad metaphor of her, her family, and the treating clinician as a ‘team’, helping her to ‘beat’ OCD. Once Y.R. developed her ‘tools’, she was eventually able to independently generalize her newfound strategies to new trigger events. It is essential to emphasize that Y.R.’s special interests in evolution and related topics were not a part of her OCD diagnosis, as these symptoms did not meet clinical criteria for obsessions or compulsions, nor did they cause her distress or interfere with her daily functioning. In fact, these 157

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7(2) interests were valued by Y.R.’s family and actually may have functioned to encourage social interaction. We concur with Baron-Cohen’s (1990) assertion that the words ‘obsession’ and ‘compulsion’ have distinct clinical meanings and do not refer to rigid or repetitive behaviors per se, but rather describe a qualitatively different constellation of behaviors that invoke extreme distress if prevented, consume inordinate amounts of time, and interfere substantially with activities of daily living. It has been our clinical experience that all too often the words ‘obsession’ and ‘compulsion’ have been used by the lay public to describe behaviors that individuals perform to excess, without regard for the relative levels of distress that may occur when behaviors cannot be performed. In Y.R.’s case, she became irritated if someone changed topics away from her special interests, but she did not appear to experience anxiety or other subjective distress on these occasions. Understanding the common characteristics of individuals with ASD is invaluable for designing a viable treatment protocol. Modifications, such as the use of direct and explicit directions for treatment and the liberal use of visual cues and strategies, were extremely helpful in the implementation of the interventions. In fact, traditional cognitive-behavioral strategies, such as cognitive restructuring, were less useful to Y.R. than the presentation of a simple list of rules. Given Y.R.’s intellectual prowess and verbal skills, engaging her in a discussion about the irrationality of her belief systems was daunting as well as unproductive, while simply stating facts and rules to her in black and white terms was a much simpler process and ultimately proved to be quite effective. Furthermore, unlike some other children with OCD alone, Y.R. did not keep her symptoms a secret, but rather talked about them without concern for other people’s reactions. Her avoidance of secrecy is consistent with Asperger syndrome, and may reflect a lack of theory of mind or just a lack of social motivation to appear symptom-free, which is so commonly observed in other children with OCD. She also tended to think in absolutes, and needed assistance understanding that symptoms can occur on a continuum, and situations are neither ‘all good’ nor ‘all bad’. Interestingly, the tendency to polarize has been associated with a depressed and anxious cognitive style (Beck, 1999). While it is not known if this cognitive style is reflective of Asperger syndrome in general, or just a few individuals with the disorder, it is possible that this tendency could contribute to the vulnerability to anxiety and depression that is reported in this population (Tonge et al., 1999). The cognitive-behavioral approaches described in this case study were modified to accommodate Y.R.’s cognitive and behavioral style as described above. Several types of modification proved useful within the course of AU T I S M

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intervention and are described in Table 2 in relation to the characteristics of Asperger syndrome to which they apply. Whether these modifications would be beneficial to a child with another autistic spectrum disorder is not known. The clear expectations inherent in CBT approaches, as well as Y.R.’s excellent response to the treatment protocol, suggest that it may be a very beneficial treatment approach for Table 2 Characteristics of Asperger syndrome and implications for treatment of OCD Characteristics of Asperger syndrome

Implications for intervention

Lack of social understanding, difficulty taking perspectives of others, poor reciprocity

Structure the social interactions, using routines for turn-taking, interrupting, and repetitive statements/questions. Interpret to the child how his/her behaviors affect the impressions, feelings, or behaviors of other people.

Demonstrates some social interest

Build a relationship with the child through a genuine appreciation for his/her uniqueness.

Values autonomy

Involve the child in decisions throughout the course of treatment.

Literal communicative style

Tell it like it is. Be direct, factual, and explicit. Accommodate the child’s desire to ‘stick to the facts’. Make lists and rules. Define terms.

Tendency to polarize/think in absolutes

Encourage the child to rate feelings on a continuous, not categorical scale.

Highly verbal; but language is disorganized or tangential

Use language-based interventions, such as social stories (Gray, 1993), webs (Freeman & Dake, 1997), or lists to distill complex concepts.

Auditory distractibility and/or wellfocused visual attention

Use visual cues to support psychoeducational materials (e.g. fear thermometer) and clarify expectations (e.g. written rules of behavior in sessions).

Curiosity/interest in novelty

Use the child’s intellectual curiosity to engage him/her in treatment activities.

Intellectual pride

Be pedantic in presentation of new concepts. Encourage using your mind to beat OCD.

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7(2) this population of children with dual diagnoses. It is important to highlight that the linguistic and cognitive strengths typically associated with Asperger syndrome may have contributed greatly to Y.R.’s ability to actively participate in the treatment, which is particularly notable since she is only 7 years old. Other children with OCD, but not this cognitive style, may not respond as effectively. In addition, other children on the autism spectrum who do not possess these same strengths may respond less favorably. More research is needed in this area to determine the particular factors (i.e. temperament, cognitive ability, and communication development) that influence a child’s responsiveness to CBT treatment for OCD symptoms. AU T I S M

Limitations and future directions It is our hope that this study will encourage other clinicians and researchers to investigate the potential benefits of a modified CBT approach to obsessive-compulsive disorder in children with an autistic spectrum disorder. Future research should address both diagnostic and treatment issues for children and adolescents who present with an autistic spectrum disorder and co-occurring OCD. Examining the effects of individual characteristics (i.e. severity of autism, cognitive ability, language ability, severity of OCD symptoms, age, gender, and temperament) on treatment outcomes is an important next step. Testing the effectiveness of components of the intervention could also be very informative, as it is unclear which components of the intervention package are more beneficial than other aspects of the treatment. Systematically comparing CBT strategies and medications in a case-controlled, randomized study would be the strongest test of the methodologies presented in this study. Ideally, assigning children with autistic spectrum disorders to three groups – medication only, CBT only, and combined treatment – would enable us to answer questions regarding the relative contributions of each method to overall outcome. Incorporating measures of collateral effects of symptom reduction, such as peer acceptance, adaptive behavior, time spent in functional activities, and family stress and perceived burden of care, would also be very instructive. Given the increased risk of developing OCD for individuals with an autistic spectrum disorder compared with the population as a whole, it is our hope that more clinicians and researchers will focus on improving assessment and treatment of this serious psychiatric condition in a group that is already significantly challenged.

Acknowledgements This research was supported by JFK Partners, a Department of Pediatrics program at the University of Colorado Health Sciences Center, which is a 160

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University Center for Excellence in research and treatment of developmental disorders. Most especially, we wish to thank the family who participated in the treatment described herein and allowed us to share our insights with the professional community.

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