If I had three wishes......

[Contributed by Mayim Bialik, Ph.D.]   The Sentence Completion and Three Wishes Tasks: One of the great challenges in studies of individuals with PWS and others with cognitive or linguistic delays is how to accurately depict self-perceptions, hopes, thoughts, and dreams. Tests used for the general population are often not appropriate for those with intellectual disabilities (ID), as labeling, expressing, and rating complex feelings and thoughts can be challenging for those with ID, and projective tasks such as the Rorschach Inkblot test are often too abstract. Objective tests and the use of parents, teachers, and caregivers to provide responses can be informative, but self-perceptions, by definition, must come from the person experiencing them.

Recently, Elisabeth Dykens and colleagues at the Vanderbilt Kennedy Center for Research on Human Development utilized two semi-projective techniques, the Sentence Completion Task and The Three Wishes Task (Dykens E et al., The Sentence Completion and Three Wishes tasks: windows into the inner lives of people with intellectual disabilities. J Intellect Disabil Res. 2007) to address this question. The Sentence Completion Task consists of presenting nine open-ended sentence stems that the participant completes. Stems include phrases such as “I would like to…;” “I am best when…;” and “I wish that… .” The Three Wishes Task asks the participant to state three wishes they would like to have magically come true. These wishes are seen as clues into the participants’ emotional life, and a safe way for them to share about their sense of self and others.

In the Dykens study, 128 participants (55 with William’s Syndrome, 26 with Down syndrome, and 47 with PWS) completed The Three Wishes Task, and of these individuals, 86 completed the Sentence Completion Task. Subjects were equally male and female, with 47 in the 5-12 year old age range (mean age: 10), 38 in the 13-19 year old age range (mean age: 16), and 43 above the age of 20 (mean age: 31). The mean IQ of all participants was 61.5.

The main findings from both tasks resulted in the identification of 19 “codes” or categories of response: academic, activities, dating/romance, family, food, friends, helping others, idiosyncratic responses, money, music, negative and positive self-statements, negative and positive physical statements, objects, occupation, pets, sports and travel.

In the Sentence Completion Task, the most common codes reported were: activities (e.g. “I would like to… go shopping”), a positive self-statement (e.g. “I am… nice”) idiosyncratic responses (e.g. “People think that I … am 15”), and families (e.g. “I am best when… I play with my sister”) and sports (e.g. “I am best when… catching balls”). More individuals with Down syndrome reported responses about friends and food compared with those with PWS and Williams syndrome, while those with William’s syndrome reported more negative responses than the other groups. Responses were analyzed in terms of how they related to the Child Behavior Checklist, a 112-item questionnaire asking parents to rate their child’s problematic behaviors (CBCL ; Achenbach, 1991). Positive physical statements in the Sentence Completion Task were associated with lower scoring on the anxious/depressed scale of the CBCL’s Internalizing domain (which measures the degree of depression, anxiety, withdrawl and somatic complaints).

In the Three Wishes Task, the most common codes reported were: activities, objects (e.g. “I wish… for that red purse”), families (e.g. “I wish… to see my grandmother”), money (e.g. “I wish… for a million bucks”), and pets (e.g. “I wish... we could have a horse”). Wishes for travel were only seen in those with Williams syndrome, and wishes for dating were higher in those with Down syndrome relative to the other syndromes. Individuals with negative wishes, which may be an indication of being at a higher risk for emotional concerns, had higher externalizing scores on the CBCL (which measures delinquent behavior, aggressive behavior and social problems), especially in the aggression scale.

Although the study had some limitations, it is the first of its kind to show that semi-projective tests are reliable and successful in understanding the inner lives of individuals with ID. Notable findings were: 1) individuals with ID often perceive themselves in terms of what activities they do, as is seen in the general population. 2) Positive self-statements were far more frequent in this study than negative statements, suggesting that previous depictions of those with ID as having negative self-evaluations may be inaccurate and damaging to the perception of those with ID. 3) Many responses involved family, friends, and pets, although data on pets is relatively scarce.

Of particular interest to the PWS community, when compared to the other participants in this study, food was NOT mentioned more frequently by participants with PWS. This is likely due to the increased awareness that those with PWS have about discussing their cravings and food-related desires, but may also suggest that those with PWS have a wider range of non-food thoughts than has previously been explored and appreciated. In addition, there are some anecdotal reports of those with PWS demonstrating a strong affinity for caring for pets. Further research examining the importance of this aspect of nurturing in the PWS community may reveal some interesting aspects of the syndrome.