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Citations http://ccs.sagepub.com/cgi/content/refs/6/6/483
Intensive, Short-Term
Cognitive-Behavioral Treatment
of OCD-Like Behavior With
a Young Adult With Williams
Syndrome
Bonita P. Klein-Tasman
University of WisconsinMilwaukee
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
484
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
486
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.
487
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.
488
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.
489
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).
490
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.
491
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