"My Voice Counts, Too": Voting Participation Among Individuals With Intellectual Disability.

Despite a strong societal commitment to ensuring that individuals with intellectual disability (ID) fully participate in their communities, few people with ID vote. Little is known about voting experiences from the perspective of people with ID. In-person, semistructured interviews were conducted with 28 adults with ID (Mage = 37 years) to obtain their input on voting. Constant comparison and content analysis methods were used to characterize themes. Results indicated that people with ID are interested in voting and desire to be included in the voting process yet receive little education on political issues or on how to make voting-related decisions. Support from family or service providers and self-advocacy facilitated their ability to vote. Implications of these findings and recommendations for future research are discussed.

A Direct Comparison of Self-Injurious and Stereotyped Motor Behavior Between Preschool-Aged Children With and Without Developmental Delays.

OBJECTIVE: To compare the prevalence of self-injurious behavior (SIB) and stereotyped motor behavior (STY) of preschool-aged children with developmental delays (DD group) and their peers without developmental delays (TD group) using a standardized caregiver report scale. METHODS: The Repetitive Behavior Scale-Revised was completed by caregivers of children with developmental delays and their peers without developmental delays. Frequency of occurrence and severity ratings for SIB and STY were compared between groups. RESULTS: SIB and STY were reported more often and at a greater level of severity in the DD group. Older chronological age was associated with more severe STY in the DD group but not the TD group. Gender was not related to STY or SIB for either group. CONCLUSIONS: Differences in STY and SIB were evident between preschoolers with and without DD. Findings are discussed from developmental and behavioral psychology perspectives regarding the expression of repetitive behavior in developmentally at-risk pediatric populations.

Assessment of the prerequisite skills for cognitive behavioral therapy in children with and without autism spectrum disorders.

The purpose of this study was to assess the cognitive skills of children with autism spectrum disorders (ASD) thought to be necessary for Cognitive Behavioral Therapy (CBT). Forty children with ASD and forty age-matched typically developing children between the ages of 7-12 years participated. Groups were comparable with regard to nonverbal IQ, but children with ASD had significantly lower verbal IQ. Children completed three CBT-related tasks requiring emotion recognition, discrimination among thoughts, feelings and behaviors, and cognitive mediation. With the exception of the emotion recognition task, children with ASD performed comparably to typically developing children and with a high rate of accuracy.

Self-injury among a community cohort of young children at risk for intellectual and developmental disabilities.

OBJECTIVE: To identify risk factors for self-injurious behavior in young children with developmental delay and to determine whether that group is also more likely to exhibit other challenging behaviors. STUDY DESIGN: A retrospective chart review of 196 children < 6 years of age referred for comprehensive neurodevelopmental evaluations. We analyzed child developmental level, receptive and expressive communication level, mobility, visual and auditory impairment, and co-morbid diagnoses of cerebral palsy, seizure disorders, and autism. RESULTS: Sixty-three children (32%; mean age = 42.7 mo, 63% male) were reported to engage in self-injurious behavior at the time of the evaluation. Children with and without self-injurious behavior did not differ on overall developmental level, expressive or receptive language level, mobility status or sensory functioning, or in rates of identification with cerebral palsy, seizure disorders, or autism. However, the self-injurious behavior group was rated significantly higher by parents on destructive behavior, hurting others, and unusual habits. CONCLUSIONS: Although self-injurious behavior was reported to occur in 32% of the cohort, the modal frequency was monthly/weekly and the severity was low. No significant differences were found for risk markers reported for adults, adolescents, and older children with intellectual and developmental disabilities. However, self-injurious behavior was comorbid with other behavior problems in this sample.

Stressful social interactions experienced by adults with mild intellectual disability.

Adults with intellectual disability are vulnerable to stressful social interactions. We determined frequency and severity of various stressful social interactions, identified the social partners in these interactions, and examined the specific interpersonal skill difficulties of 114 adults with mild intellectual disability. Participants' characteristic risk factors for stressful social interactions were also identified. Minor and unintentional negative actions of others had high frequency but low severity of stress. Serious and intentional negative actions of others had a low frequency but high severity of stress. Stressful social interactions with other people who have intellectual disability occurred frequently and had a high severity. Difficulty controlling aggression predicted stressful social interactions. Findings are beneficial to developers of interventions to decrease stressful social interactions.

Depression in adults with mild intellectual disability: role of stress, attributions, and coping.

The experience of stressful social interactions, negative causal attributions, and the use of maladaptive coping efforts help maintain depression over time in the general population. We investigated whether a similar experience occurs among adults with mild intellectual disability. We compared the frequency and stress impact of such interactions, identified causal attributions for these interactions, and determined the coping strategies of 47 depressed and 47 nondepressed adults with mild intellectual disability matched on subject characteristics. The depressed group reported a higher frequency and stress impact of stressful social interactions, more negative attribution style, and more avoidant and less active coping strategies did than the nondepressed group. Findings have implications for theory building and development of psychotherapies to treat depression.

Coping Strategies of Adults with Mild Intellectual Disability for Stressful Social Interactions.

Adults with mild intellectual disability (ID) experience stressful social interactions and often utilize maladaptive coping strategies to manage these interactions. We investigated the specific types of Active and Avoidant coping strategies reported by 114 adults with mild ID to deal with stressful social interactions. Open-ended responses to a sentence stem task were coded into five dimensions of Active and Avoidant coping. Adults with mild ID used Problem-Focused coping most frequently and this strategy was negatively correlated with psychological distress. Emotion-Focused coping was used infrequently but was also negatively related to psychological distress. Coping accounted for a significant portion of variance in psychological distress after controlling for perceptions of stressful social interactions. Findings have important implications for informing the development of interventions to enhance the ability of adults with mild ID to cope with stressful social interactions.

Spontaneous eye-blinking and stereotyped behavior in older persons with mental retardation.

Previous research indicates that abnormal stereotyped movements are associated with central dopamine dysfunction and that eye-blink rate is a noninvasive, in vivo measure of dopamine function. We measured the spontaneous eye-blinking and stereotyped behavior of older adults with severe/profound mental retardation living in a state mental retardation facility. Analyses revealed that the mean eye-blink rate of the residents that engaged in stereotypy was significantly lower than the rate for residents who did not exhibit stereotypy. Moreover, the stereotypy group also demonstrated greater variability in interblink intervals. These results provide further empirical support for the involvement of dopamine in stereotyped behavior and are consistent with an emerging motor control model of stereotypy.

Patient and parent/guardian perspectives on the health care of adults with mental retardation.

Individuals with mental retardation and their parents/guardians have long been neglected in health care research. In this study we used a qualitative methodology to describe the experiences adults with mental retardation and their parents/guardians have with the delivery of primary care services. Semi-structured in-depth interviews were conducted with 12 adults who had mental retardation and 9 parents/guardians. The grounded theory approach was utilized to guide data collection and analysis. Findings suggest an overall positive experience with primary care services. Unique themes were identified that distinguished parent/guardian experiences from those of adults with mental retardation, who focused on immediate, concrete issues related to service delivery, whereas parents/ guardians focused on more peripheral or abstract issues related to the delivery of primary care.

Maladaptive behaviors and risk factors among the genetic subtypes of Prader-Willi syndrome.

Maladaptive behaviors among 65 people with Prader-Willi syndrome were assessed using the Reiss Screen for maladaptive behaviors. Young adults in their twenties were more likely to display aggressive behavior than adolescents and older adults. Differences in maladaptive behaviors between the typical deletion and uniparental disomy (UPD) subtypes were evaluated. The typical deletion subtype had higher self-injury and stealing scores than the UPD subtype. Subject characteristics were differentially related to maladaptive behavior among the typical deletion and UPD subtypes. Differences in maladaptive behavior were also examined between the typical deletion type I and type II subtypes. The type I deletion subtype had greater physical depression scores than the type II deletion subtype. The Reiss Screen cut-off scores were used to determine whether differences occurred between the subtypes at a clinically significant level. These findings offer insight into the health care needs of people with PWS.

Perceptions of stress and coping strategies among adults with mild mental retardation: insight into psychological distress.

Stress, coping, perceptions of control, and psychological distress of 88 adults with mild mental retardation were assessed. Stressful interpersonal interactions and concerns over personal competencies occurred most frequently. Frequency and stress impact were positively associated with a composite score of psychological distress. Active coping was associated with less psychological distress than distraction or avoidant coping. Perceptions of control were positively related to active coping and negatively related to avoidant coping. Active coping was related to less psychological distress when used with perceptions of high control than with perceptions of low control. Decreasing opportunities for stress and increasing accurate perceptions of control and subsequently active coping may reduce psychological distress among people with mild mental retardation.

Prader-Willi Syndrome: Genetics and Behavior.

Since its inception, the John F. Kennedy Center has attempted to overcome developmental problems, which create restrictive barriers to the participation of individuals with specific disabilities in our broader society. Some of Nicholas Hobbs's earliest efforts involved developing strategies for preventing children's emotional and behavior problems, which interfered with their later full participation in society. Other investigators in the Kennedy Center explored ways of reducing dysfunctional repetitive movement problems and self-injury commonly associated with autism and severe mental retardation. We have become concerned about a group of people who have the potential to live largely independently (or semi-independently), to work at meaningful jobs in the community, and to make full use of the same recreational and leisure opportunities as other members of society but who are prevented from doing so because of a life-threatening behavior problem. Prader-Willi syndrome (PWS) is a genetic developmental disability characterized by a group of specific behavioral features of which an insatiable appetite is the most striking. PWS is the most commonly known genetic cause of obesity. The eating disorder associated with PWS can be so severe as to be life threatening, including eating to the point of stomach rupture and death. Though a cluster of commonly covarying clinical features are exhibited by people with this syndrome, only the eating disorder is common to all affected individuals. PWS shares behavioral features with other disorders and disabilities, such as obsessive compulsive disorder and autism, but only PWS includes the unique combination of characteristics that distinguish this syndrome. Because eating disorders such as bulimia and anorexia nervosa also share features with PWS, any light that could be shed on the causes and treatment of the eating disorder in PWS could potentially have far-reaching implications for other eating disorders as well. In this article, we review the behavioral, cognitive, and other psychological features of PWS and explore their relationships to known genetic mechanisms.