Clinical Case Studies

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Intensive, Short-Term Cognitive-Behavioral Treatment of OCD-Like Behavior With a

Young Adult With Williams Syndrome
Bonita P. Klein-Tasman and Anne Marie Albano
Clinical Case Studies 2007; 6; 483
DOI: 10.1177/1534650106296370
The online version of this article can be found at:
http://ccs.sagepub.com/cgi/content/abstract/6/6/483

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Intensive, Short-Term
Cognitive-Behavioral Treatment
of OCD-Like Behavior With
a Young Adult With Williams
Syndrome

Clinical Case Studies

Volume 6 Number 6
December 2007 483-492
2007 Sage Publications
10.1177/1534650106296370
http://ccs.sagepub.com
hosted at
http://online.sagepub.com

Bonita P. Klein-Tasman
University of WisconsinMilwaukee

Anne Marie Albano

Columbia University, NY

In contrast to the application of applied behavior analysis principles in autism and developmental disorders, there is a general paucity of research examining effectiveness of cognitivebehavioral interventions with individuals with mental retardation and even less with mental
retardation of a specific etiology. The authors present a case study of cognitive-behavioral
treatment for emotional and behavioral difficulties in a young man with Williams syndrome,
a genetic disorder characterized by developmental and psychosocial impairments. Following
a functional assessment, an intensive intervention was designed and implemented to address
social skills difficulties, obsessions, and compulsions. Results suggest that cognitive-behavioral
interventions may be promising with this population. Obstacles encountered and lessons
learned are discussed.
Keywords: Williams syndrome; cognitive-behavioral therapy; developmental disability;
mental retardation

1 Theoretical and Research Basis

Evaluation of cognitive-behavioral therapy approaches with individuals of varying
levels of intellectual abilities and associated developmental disabilities is sorely lacking.
Children with less-than-average intellectual abilities are often excluded from evaluations of
treatment efficacy in the empirically supported intervention literature (e.g., Kendall, 1994;
March et al., 2004; Pfiffner & McBurnett, 1997). Given that people with genetic disorders
may show common characteristic patterns of psychopathology and problem behavior (i.e.,
behavioral phenotypes), an etiologically informed approach to treatment development may
Authors Note: We would like to thank Michael Detweiler and Tami Roblek for acting as therapists for portions
of the treatment and Carolyn Mervis for making it possible for the family to attend the intensive treatment.
Thank you also to Kristin Phillips, Frank Gallo, Kirsten Li, Mike Gaffrey, and Carolyn Mervis for providing
helpful comments on this article. Correspondence concerning this article should be addressed to Bonnie KleinTasman, Department of Psychology, University of WisconsinMilwaukee, PO Box 413, Milwaukee, WI 53201;
phone: 414-229-3060; e-mail: bklein@uwm.edu.
483
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be particularly appropriate. There is currently very little literature about psychological

interventions for individuals with intellectual disabilities as a result of known genetic disorders (see Klein-Tasman, Phillips, & Kelderman, in press, for a review). It is possible that
specific treatment protocols could be developed for individuals with particular genetic etiologies of intellectual disability, incorporating knowledge of their cognitive and behavioral
phenotypes. An integration of the field of genetic-developmental disorders and cognitivebehavioral interventions has the potential to greatly improve the quality of life for those disabled by these conditions.
In the current case study, we present the structure and outcome of a brief, intensive
cognitive-behavioral psychosocial treatment conducted with a young adult with Williams
syndrome. Williams syndrome is a neurodevelopmental disorder resulting from a hemizygous
contiguous gene deletion on the long arm of Chromosome 7 (Hillier et al., 2003; Morris,
2006). A characteristic cognitive and behavioral phenotype is increasingly delineated in the
literature (see Mervis & Klein-Tasman, 2000, for a review). In terms of cognitive strengths
and weaknesses, individuals with Williams syndrome generally show an extreme relative
weakness in visuospatial skills and a relative strength in verbal short-term memory (Mervis
et al., 2000). Most adults with Williams syndrome speak in fluid language, though their
comprehension of abstract language is typically more limited than their concrete language
understanding and use (Sullivan, Winner, & Tager-Flusberg, 2003). In terms of personality
and behavioral functioning, there is growing evidence from investigations of both personality and psychopathology that although people with Williams syndrome are generally sociable and interested in interactions with others, they show high rates of attention problems and
experience elevated levels of anxiety and tension and a tendency toward obsessiveness
(Dykens, 2003; Klein-Tasman & Mervis, 2003; Leyfer, Woodruff-Borden, Klein-Tasman,
Fricke, & Mervis, 2006). Although elevated levels of depression have not been reported in
the literature, Dykens, Hodapp, and Finucane (2000) caution against overlooking possible
depressive symptoms given the generally happy presentation of individuals with Williams
syndrome. In addition, high levels of sound sensitivity have been reported, with accompanying problem behaviors (Levitin, Cole, Lincoln, & Bellugi, 2005; Leyfer et al., 2006).
Sociocommunicative deficits have also been reported (Laws & Bishop, 2004; Mervis, 2006),
and social skills are typically also an area of concern for parents (Davies, Howlin, & Udwin,
1997; Davies, Udwin, & Howlin, 1998; Howlin & Udwin, 2006).
Although some treatment recommendations do appear in the literature (e.g., Dykens
et al., 2000; Semel & Rosner, 2003), to date, there have been very few psychological intervention studies of people with Williams syndrome. Two case reports using functional analytic behavioral approaches have been published. In one investigation, OReilly and
Lancioni (2001) successfully treated food refusal in Williams syndrome using escape
extinction and differential reinforcement of bites, with strong parental involvement. In a
second study, OReilly, Lacey, and Lancioni (2000) found that use of earplugs reduced
problem behaviors in the presence of background noise. Both interventions were conducted
with young children and point practitioners in the direction of promising interventions for
feeding problems and sound sensitivity in Williams syndrome. There has been no research
published regarding psychosocial treatments for older children, adolescents, or young
adults with Williams syndrome, despite the high level of emotional and behavioral difficulties reported throughout their lifespan.

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485

It is critical that those practitioners working with people with intellectual disabilities
with known genetic etiologies make attempts to share their experiences with treatment
approaches. As we have argued (Klein-Tasman et al., in press), the integration of science
and practice is particularly challenging for psychological interventions with people with
rare disorders, as a given practitioner is unlikely to interact with more than one or two people
affected by the disorder. Sharing of intervention approaches and outcomes is therefore particularly critical for these rare populations. The most commonly used empirically supported
approaches to emotional and behavioral difficulties in the general population are cognitivebehavioral, making an evaluation of the effectiveness of this approach in those with less-thanaverage intellectual abilities warranted.

2 Case Presentation
Jack is a young man with Williams syndrome in his mid-20s. At the time of the assessment and intervention, he lived at home with his parents and worked part-time as a custodial worker on a college campus. He was referred for assessment and treatment of
OCD-like behavior that has interfered with his independent functioning. Jacks parents
reported that Jack experienced obsessive thoughts about the sexual behavior of students on
campus (particularly in the dorms). In addition, Jack experienced compulsions to tell others
on campus about his condemnation of sexual interactions and behavior. Jack also experienced difficulty controlling his own sexual impulses, in that when he became aroused, he
would often masturbate in a public restroom, placing himself at great risk for legal problems
and increased social difficulties.

3 Assessment
Jack achieved a Kaufman Brief Intelligence Test (Kaufman & Kaufman, 1990)
Composite IQ score of 56, with standard scores of 64 and 55 for Vocabulary and Matrices,
respectively. Given Jacks developmental level, the childrens version of the Anxiety
Disorders Interview Schedule for the DSM-IV (ADIS) was administered (Silverman &
Albano, 1996). As Jack held a part-time job and was no longer in school, necessary modifications to school-related questions were made to reflect the work place as opposed to
class and school situations. The parent portion of the ADIS was administered to Jacks parents, and the child portion was administered to him. In addition, the Childrens Yale-Brown
Obsessive Compulsive Scale (CY-BOCS; Scahill et al., 1997) and several questionnaire
measures were completed by Jack or his parents.
In keeping with the character of individuals with Williams syndrome, Jack was extremely
cooperative during his portion of the interview, although he did require occasional prompting to remain on the current topic. Results from this interview suggested the following diagnoses: multiple specific phobia (high places, thunderstorms, planes, elevators), past major
depressive episode, and some tendencies toward social anxiety disorder and generalized anxiety
disorder. Jack reported that one of his main current worries was related to whether he would
find a mate. In addition, he was concerned about the college kids in the dorm who are a bunch

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of animals and who behave inappropriately, in his opinion. Results of the CY-BOCS and
ADIS interviews indicated that Jack experienced moderate obsessive-compulsive disorder
(OCD; CY-BOCS total 25, some items endorsed deemed related to social skills deficit). The
parent interview suggested a diagnosis of generalized anxiety disorder, according to Jacks
mothers report, OCD, with obsessions about others sexual behavior and compulsions consisting of telling on himself and others, and multiple specific phobia (bees, high places,
thunderstorms, hurricanes, tornadoes, planes, and elevators).

4 Case Conceptualization
It was recommended that Jack receive treatment aimed at teaching skills to cope with his
anxiety. As Jack and his family traveled from some distance for this assessment and brief
intensive intervention, clinical presenting problems were prioritized, and appropriate interventions were selected. Following assessment, we were able to provide initial, intensive
treatment composed of 3 days of intensive therapy sessions, totaling 18 hours of direct
client-therapist contact, and daily homework assignments with on-going therapy arranged
in his home community. Three areas were targeted for our intensive treatment:
1. Jack had difficulties controlling his impulses, particularly in his interactions with women.
He had a tendency to comment on their looks, to ask whether they had a boyfriend, to hug
or put his arm around women he barely knew, and to stare at attractive women. These difficulties were of great concern to Jacks parents, who worried that Jack might be taken
advantage of, that he might get in trouble with the law, or that these behaviors would interfere with Jacks ability to lead a productive life. To address social skills deficits, psychoeducation was conducted, together with role-playing of adaptive behaviors in
scenarios that tend to elicit inappropriate behavior.
2. Jack also had difficulty controlling his urge to masturbate when sexually aroused and
sometimes masturbated in public restrooms rather than waiting until the arousal dissipated or he was in a more private location. To address Jacks difficulties when aroused,
psychoeducation about male sexuality was conducted, together with exposure to arousal
with response prevention.
3. To address Jacks obsessive rumination about others sexual behavior, cognitive restructuring was carried out, together with role-playing of exposure to anxiety-provoking stimuli as
similar as possible to the dorms. Jacks obsessive ruminations were partly related to religious conviction. Relatedly, Jack felt compelled to tell others about his obsessive thoughts.

5 Course of Treatment and Assessment of Progress

During treatment, Jack maintained his prescribed medication regimen: 20 mg of paroxetine (Paxil), once per day. Jacks cooperation and commitment to the program were exceptional. He attentively listened to all therapist statements and enthusiastically cooperated
with all the intervention methods, even when distressed or uncomfortable. The first phase
of treatment included information and education about male sexual response and the rationale for each treatment component.

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Social Skills
Role-playing of situations in which Jack might meet unfamiliar women (on a bus, in a
restaurant, at a dance club or bar) was conducted. Jack was instructed to pay attention to
body language (eye contact, facial expression, seated position) to determine whether the
other person was interested in engaging in conversation and, given his tendency to ask or
reveal personal information, to keep initial conversations light. He was also instructed not
to stare. Sometimes this resulted in completely restricted behavior (e.g., he would stare
down into his menu), and Jack also practiced varying eye gaze. Different ways of greeting communicative partners, as alternatives to hugging, were also introduced: shaking
hands, waving goodbye, saying goodbye. He particularly responded to the idea that others
might be more comfortable with less-intimate greeting behavior. The ultimate test of Jacks
social skills took place when he had a snack with a group of graduate students in a public
restaurant (in vivo practice). In addition, Jack was left to interact with two female graduate
students with whom he was barely acquainted. They both reported that his interactions
were appropriate.

Delay of Masturbation
One target of treatment was Jacks inability to delay masturbation until arousal dissipated, given that his compulsion to act on his arousal was problematic. Although Jack knew
not to expose himself in public, when aroused in public he tried to find a public restroom
to masturbate and relieve his sexual tension. The first phase of treatment for this behavior
consisted of education about male sexuality, including assertions about the normality of
Jacks arousal and reassurance that if Jack waits and distracts himself, his arousal will dissipate without the need for immediate gratification. Although Jacks parents reported
numerous similar discussions with Jack, it appeared that the input of outside parties had an
important impact on Jack.
In addition to this educational component, Jack was repeatedly exposed to sexually
arousing material (movies, magazines) until he became aroused and was then coached to
sit with the arousal and discuss football or some other distracting topic. Subjective units of
distress were collected each minute. A rubber band around his wrist also served as a
reminder to snap out of it and begin to think about other things; Jack would pull the rubber band while aroused as a physical cue to think about something other than the arousal.
This intervention was first unsuccessfully conducted with female therapists; Jack did not
report significant arousal. It was possible that he either did not become aroused as he was
distracted by the therapists presence or, alternatively, that he did become aroused but was
not comfortable reporting this to the therapists. The next day, the intervention was repeated
with male graduate student therapists, with initial arousal and reported reductions in levels
of arousal with repeated exposure.

Obsessive Rumination About Others Sexual Behavior

Jacks thoughts about others behavior caused difficulties in that he felt compelled to tell
others about the behavior he felt was unacceptable. Cognitive restructuring was attempted

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to encourage Jack to see that what others do in private is not relevant to him, so that he does
not feel he needs to tell others. Jack was brought to an unfamiliar space and was told that
this was where students sometimes hung out. Behind closed doors, confederates made
noises simulating sex, and a trash can containing condoms was also present. This scenario
elicited anxiety and anger in Jack, and Jack was asked to practice an adaptive way to handle
the situation: Snap out of it (using a rubber band as a concrete cue to divert his attention
away from the arousing stimulus rather than to stop the thoughts per se), tell himself that it
is none of his business, and walk away. The value of thinking of other things was emphasized.

Outcome and Follow-Up Recommendations

It appeared that Jacks response to treatment was positive in that he verbalized greater
awareness of his behavior, especially his behavior in the presence of women. He appeared
able to stop ruminations about others sexual behavior and spontaneously expressed the
understanding that arousal will dissipate in time (if I just let it go). The therapists engaged
Jack in developing and filming a relapse-prevention video to take home for his review. This
video involved Jack describing the psychoeducation, each treatment element, and his accomplishments in the intensive therapy. It was thought that the video helped to further consolidate Jacks new understanding and behavior, and this medium also provided a means for
Jack to present to his new therapist back home the treatment components and plan.
To maintain and maximize treatment effects, the following maintenance plan was proposed. First, Jack was instructed to use the rubber band around his wrist and the video summarizing treatment as reminders of his time of intensive treatment and of what he has
learned. Second, Jacks parents were instructed to find a time at the end of each day to discuss Jacks behaviorwhat he felt he did well and what he would like to do differently next
time. These discussions are meant to maintain the level of self-awareness with which Jack
conducted himself during the intensive treatment. Third, Jack and his parents were provided with a referral to a local psychologist who could continue treatment within a behavioral framework. Finally, follow-up contact with Jack and one of his therapists was
arranged at a time when the family and the therapist would be at the same location (a
Williams syndrome conference).
During the course of the week-long assessment and intervention, Jack and his parents
were motivated participants in the treatment. Jack appeared able to articulate the kinds of
behaviors that were problematic for him, and his compliance with requests of the therapist
was high. He appeared to benefit from discussing the situations that presented challenges for
him (e.g., appropriate interaction with others on a bus, in the hallways of a college). Simple
cognitive restructuring appeared to be possible and beneficial (e.g., rather than think that he
must masturbate if aroused, learning that he can just wait and his arousal will dissipate).
Concrete strategies, such as adaptive self-statements (e.g., its none of my business) and
the presence of a physical cue (i.e., rubber band on wrist), also appeared helpful. In addition,
following the intervention, the use of a video to review the content and process of treatment
and the lessons learned was critical to support the vividness of his memory of the treatment
experience. In addition, the treatment efforts appeared to give Jack and his parents a common language for discussion of his difficulties and efforts to cope.

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6 Complicating Factors
Self-Report Ability
The ability to report about the occurrence of internal events may vary across individuals
and may be affected by cognitive impairments associated with mental retardation. Presence
of internalizing symptoms is considered best assessed by self-report. During Jacks assessment and treatment, there were a number of occasions when it was difficult to determine
whether he accurately reported about his experiences. First, he required more guidance in
the use of the feelings thermometer than do many individuals, even young children.
Modification of the feelings thermometer to include fewer gradations might be beneficial
for individuals with cognitive challenges. Second, during the exposures to sexually arousing videos in particular, Jack reported very low levels of arousal (maximum of 2 on a scale
of 0 to 8). However, behavioral observation suggested that Jack may have become more
strongly aroused during the video viewing. On a few occasions, when asked to produce a
rating, he had difficulty responding. It is possible that Jack was embarrassed at his arousal
and therefore did not want to report it. Another alternative is that he was not aware of his
arousal and was therefore unable to report about it.

Desire to Please
Individuals with Williams syndrome are very sociable, empathic, and concerned with
pleasing others (Semel & Rosner, 2003). Although male sexual response and ruminative
thoughts were normalized, it is possible that Jack did not fully disclose information that he
felt would not be agreeable (e.g., perceived ineffectiveness of the intervention).

Lack of Integration of Treatment With Client Values

One significant impediment to treatment success may very likely have been that the
client and his family did not feel that their own values were well enough integrated into
the treatment approach. Integration of client values into therapy is likely very important to the
development of an effective working relationship. In the treatment of obsessive-compulsive
behavior, it is sometimes critical to expose a patient to stimuli that run counter to his or her
religious or cultural beliefs. Such was the case with Jack. In hindsight, better preparing the
parents for the rationale of exposure to explicit material and the role of habituation in
decreasing compulsions may have allayed their concerns and resulted in better adherence
to follow-through and support of this treatment component. Alternatively, the therapists
could explore other options for addressing these behaviors. Finally, given the very limited
amount of time allowed for the treatment, a decision to forgo addressing the arousal issue
and referring this to a local therapist may have been taken to allow the parents and Jack to
develop more of a relationship with the therapist and trust in the approach.

Lack of Continued Treatment, Follow-Up

Although Jack and his parents were provided with a referral to a local behaviorally oriented therapist, they did not follow up on this referral. Periodic revisiting of the skills

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taught is important for any individual. It is likely, given Jacks level of intellectual abilities,
that regular review of the coping skills is particularly critical to his ability to continue to
use them. In particular, intensive treatments such as this one with individuals with developmental disabilities need to be followed by regular sessions with a clinician to solidify
newly learned skills, or the treatment will not likely be effective in the long term.

7 Follow-Up
Follow-up was conducted 2 months following treatment and again 6 months after that at
regional and national Williams Syndrome Association conventions. At the time of initial
follow-up, Jack and his parents indicated that there were both positive and negative consequences of the therapeutic experience. The family reported that on return they watched the
video about treatment on a number of occasions but that they had not pursued the referral
to the local psychologist for additional therapeutic support. Jacks parents noted that Jack
did appear to be more aware of his tendency toward socially inappropriate behavior and that
they had indeed seen improvements.
Nonetheless, subsequent to these initial follow-up sessions, Jack lost his job on the college campus because of discomfort about his behavior there, suggesting that significant
treatment effects were not fully maintained. In subsequent years during contact with the
first author at several conferences, however, they indicated that the role-playing for appropriate social behavior with members of the opposite sex and regarding ruminative thoughts
was indeed helpful. Critically, Jacks mother provided feedback to the therapist regarding
discomfort with some of the intervention procedures used, particularly related to Jacks
difficulties regarding sexual arousal. She felt particularly uncomfortable with the use of
videos to elicit arousal and felt that the approach used may have had the effect of increasing his arousal. Moreover, she indicated that she felt that the treatment approach had been
inconsistent with family beliefs and values. She had been willing to allow the use of the
approach in the hopes that it would result in fewer difficulties related to acting out on his
sexual arousal, but in retrospect she felt uncomfortable with this aspect of the treatment
efforts.

8 Treatment Implications of the Case

This is the first case report of the use of cognitive-behavioral interventions to address
emotional and behavioral problems in an individual with Williams syndrome. Research
regarding the effectiveness of psychosocial treatments in Williams syndrome is sorely lacking. In this case report, we outlined our assessment and treatment approach with this individual and reported about promising results and treatment failures. Overall, the goals of this
intervention were to help Jack and his family to learn better skills to cope with Jacks anxiety, obsessive and compulsive behaviors, and problematic expressions of his sexuality.
Although some aspects of the intervention showed promise, there were several factors that
contributed to limitations in its effectiveness, as reviewed above.

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9 Recommendations to Clinicians and Students

There are very few investigations of the effectiveness of cognitive-behavioral interventions with individuals with developmental disabilities resulting in cognitive limitations
because of genetic disorders. In this case report, one such treatment experience is
described. Cognitive-behavioral interventions appear to be promising for use with individuals with Williams syndrome, even when they have intellectual abilities in the range of mild
mental retardation. Many aspects of the treatment approach were well received by the family at the time of delivery, and the approach appeared to yield some benefit for the client.
For example, in the short term, the use of exposure and response prevention and the use of
simple cognitive restructuring appeared to reduce distress because of repetitive thoughts.
However, several obstacles to effective treatment results were identified, including difficulties with self-report, lack of integration of aspects of treatment with family values, and
lack of continued intervention to solidify and maintain treatment gains. Clinicians and students are encouraged to share their treatment efforts, successes, and challenges in the
implementation of research-based therapies with individuals with developmental disabilities so as to strengthen the research literature.

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Bonita P. Klein-Tasman is assistant professor of psychology at the University of WisconsinMilwaukee. She

serves on the editorial board of Journal for Autism and Developmental Disorders. She was the principal investigator of an NIH study titled Social Behavior in Young Children with Williams Syndrome. Her research interests are the cognitive, emotional, and social characteristics of children with neurodevelopmental disorders, with
a significant focus on Williams syndrome. She seeks to gain a better understanding of the social and emotional
experiences of people with Williams syndrome.
Anne Marie Albano is associate professor of clinical psychology and psychiatry at Columbia University and
director of the Columbia University Clinic for Anxiety and Related Disorders. She has more than 85 publications and is the past editor of Cognitive and Behavioral Practice. She is the president-elect of the Association
for Cognitive and Behavioral Therapies (formerly AABT). She is the principal investigator of the NIMH multicenter trial titled Child/Adolescent Anxiety Multimodal Study and was a principal investigator on the landmark
Treatments for Adolescents with Depression Study. Her research interests are in the areas of developmental psychopathology and treatment research in child and adolescent anxiety and mood disorders, with a focus on randomized clinical trials and the evaluation of developmentally sensitive cognitive behavioral treatments for youth
and families.

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