Sensory clusters of toddlers with autism spectrum disorders: differences in affective symptoms.

BACKGROUND: Individuals with autism spectrum disorders (ASDs) show variability in their sensory behaviors. In this study we identified clusters of toddlers with ASDs who shared sensory profiles and examined differences in affective symptoms across these clusters. METHOD: Using cluster analysis 170 toddlers with ASDs were grouped based on parent rating of the Infant Toddler Sensory Profile (Dunn, 2002) under-responsivity, over-responsivity, and seeking scales. Affective symptoms were evaluated with the Infant Toddler Social Emotional Assessment (Carter & Briggs-Gowan, 2005). RESULTS: Three clusters were identified: (1) low frequency of sensory symptoms (n = 44); (2) high frequency of symptoms (n = 49); and (3) mixed (n = 77); high frequency of under-and over-responsivity and low frequency of seeking). Relative to the low frequency cluster, parents rated toddlers in the high frequency and mixed clusters (both characterized by high frequencies of sensory under- and over-responsivity) as higher on negative emotionality, depression, and anxiety symptoms. Sensory and affective differences among clusters remained after co-varying severity of ASD symptoms. CONCLUSIONS: Interdisciplinary assessments are recommended for toddlers with ASDs in order to identify the interplay of sensory and affective symptoms.

Siblings of individuals with autism or Down syndrome: effects on adult lives.

BACKGROUND: In this study, we examine instrumental and affective involvement in the sibling relationship for adults who have a brother or sister with an autism spectrum disorder (ASD) or Down syndrome (DS). We ask three research questions: (1) How do adult siblings of individuals with ASD differ from siblings of individuals with DS in their assessment of the quality of the sibling relationship and their experience of growing up with a brother or sister with a disability? (2) Are there gender effects on the sibling relationship and sibling experience in these two groups? (3) Which factors are predictive of variation in the sibling relationship for siblings of adults with ASD or DS? METHODS: Data from 154 siblings who participated in two linked longitudinal studies were used. Seventy-seven siblings with a brother or sister with ASD were matched by age and gender to 77 siblings with a brother or sister with DS. The siblings in each group were between 21 and 56 years of age and over half were sisters. Siblings completed questionnaires on instrumental and affective involvement with their brother or sister with ASD or DS, the impact of growing up with a brother or sister with a disability on their lives, and their coping skills and feelings of pessimism. RESULTS: Compared with the siblings of adults with DS, siblings of adults with ASD had less contact with their brother or sister, reported lower levels of positive affect in the relationship, felt more pessimistic about their brother or sister's future, and were more likely to report that their relationships with their parents had been affected. For siblings of adults with ASD, a closer sibling relationship was observed when the sibling had lower educational levels, lived closer to the brother or sister with ASD, used more problem-focused coping strategies, and when his or her brother or sister with ASD had higher levels of functional independence. In contrast, for siblings of adults with DS, a closer sibling relationship was observed when the sibling did not have children, had lower levels of education, lived closer to the brother or sister with DS, when he or she used more problem-focused coping, was less pessimistic about the brother or sister's future, and when his or her life had been impacted to a greater extent by growing up with a brother or sister with DS. CONCLUSIONS: We discuss the implications of these findings for future caregiving roles for siblings. Siblings of individuals with ASD may face difficulty when their parents are no longer able to be the primary caregivers for their brother or sister with ASD, as they tend to have less emotional closeness and are more pessimistic about their brother or sister's future than siblings of individuals with DS. Moreover, in both groups, a closer sibling relationship was observed when the sibling used more problem-focused coping strategies, which may have implications for intervention.

Continuity or discontinuity of family involvement following residential transitions of adults who have mental retardation.

Family involvement with adults who have mental retardation following a residential transition to a nonparental living situation was examined. We found that aging mothers were highly involved in the relocation process and had frequent contact and continued emotional involvement with their adult child. Mothers became increasingly satisfied with their level of contact with their child over time, less worried about the future, and had decreasing levels of direct caregiving and contact with residential staff. Adult siblings reported improved sibling relationships over time. Siblings whose brother or sister moved out of the parental home increased their shared activities and felt less pessimistic about the future. Findings address a critical gap in knowledge about the life course roles of families of persons with mental retardation.

Brothers and sisters of adults with mental retardation: gendered nature of the sibling relationship.

Differences and similarities between brothers and sisters of adults with mental retardation with respect to the instrumental (caregiving, companionship) and affective (positive affect, emotion) aspects of the sibling relationship were examined. Sisters scored higher than brothers in the caregiving, companionship, and positive affect aspects of the sibling relationship. Brothers' sibling relationships were conditioned by the gender of the sibling with mental retardation. Brothers of brothers with mental retardation had a more favorable emotional response than did brothers of sisters. Two-wave longitudinal data showed that sibling involvement and closeness increased over time, but was dependent upon changes in the health of the mother. The findings are discussed in relation to normative patterns in the sibling relationship across the life course.

Mothers and fathers of children with Down syndrome: parental stress and involvement in childcare.

Parental stress was examined in socioeconomically matched samples of mothers and fathers of children with Down syndrome and typically developing children. Parents of children with Down syndrome perceived more caregiving difficulties, child-related stress (distractibility, demandingness, unacceptability), and parent-related stress (incompetence, depression, health problems, role-restriction) than did parents of typically developing children. For the combined groups of parents, mothers' stress was associated with children's caregiving difficulties; fathers' stress, with children's group status (Down syndrome, typically developing). Mothers who reported more responsibility for childcare perceived more difficulties with health, role restriction, and spousal support. Fathers who reported more responsibility for childcare perceived fewer difficulties with attachment and parental competence. Partner stress was associated both with mothers' and with fathers' stress.

Siblings of adults with mental illness or mental retardation: current involvement and expectation of future caregiving.

OBJECTIVE: The study examined the factors associated with the involvement of siblings in the life of a brother or sister who has mental illness or mental retardation. Involvement was defined as the current provision of instrumental and emotional support as well as the expectation of future caregiving responsibility. METHODS: A mailed questionnaire was used to collect data from 61 siblings of adults with serious mental illness and 119 siblings of adults with mental retardation. The sample was drawn from two ongoing longitudinal studies. RESULTS: The two groups of siblings showed striking differences in their expectations about their responsibility for future caregiving. Almost 60 percent of the siblings of adults with mental retardation expected to assume primary caregiving responsibility in the future, but only one-third of the siblings of adults with mental illness held this expectation. For both groups, competing family responsibilities limited the involvement of siblings, whereas closeness to the family of origin led to greater sibling involvement. CONCLUSIONS: The extent of current and future involvement by siblings of adults with disabilities is a function of the demands and constraints of midlife as well as the degree of closeness with the family of origin. The findings highlight the importance of clinicians' work to support and strengthen family relationships, which loom large in determining the extent to which siblings are involved in the care of a brother or sister with disabilities.