Caregivers and Coping: Well-being and coping styles among caregivers of young adults with developmental disabilities

Singer, Hannah; Clarke, Elaine; Schiltz, Hillary; Lord, Catherine

doi:10.1101/2023.02.24.23286429

Cited by 2 publications

(1 citation statement)

References 35 publications

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“…Notably, other than the questionnaire measure of loneliness at age 17, our findings revealed highly similar levels of loneliness for autistic and non-autistic NDD participants in our sample. These similarities across groups parallel other findings showing similar trajectories and outcomes for individuals with NDD and autistic individuals ( Lord et al, 2020 ; McCauley et al, 2020 ) and their family members ( Schiltz et al, 2023 ; Singer et al, 2023 ). Research should continue to identify unique and disparate experiences, challenges, and strengths of autistic people and people with non-spectrum developmental delays.…”

Section: Discussionsupporting

confidence: 84%

A longitudinal study of loneliness in autism and other neurodevelopmental disabilities: Coping with loneliness from childhood through adulthood

Schiltz,

Gohari,

Park

et al. 2023

Autism

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Many autistic people and people with non-spectrum neurodevelopmental disabilities (e.g. intellectual disability) report feeling lonely, which can negatively impact their well-being. There is little longitudinal research, however, tracking changes in how autistic people experience, conceptualize, and cope with loneliness throughout their lives. A longitudinal sample of 114 people, which included autistic participants and participants with neurodevelopmental disabilities, characterized experiences of loneliness, perceptions of other people’s loneliness, and strategies used to cope with loneliness from childhood to adulthood. Level of loneliness and coping strategies were coded from Autism Diagnostic Observation Schedule Modules 3 and 4 protocol forms. Autism Diagnostic Observation Schedule Loneliness Ratings were correlated across time and increased from adolescence to young adulthood. The most common loneliness coping strategies were Behavioral Distraction (e.g. watching TV) and Instrumental Action (e.g. seeking social contact), which were both used by more people in adulthood than childhood. Those who used Behavioral Distraction and a greater number of coping strategies had higher Autism Diagnostic Observation Schedule Loneliness–Self Ratings (i.e. were lonelier) during adolescence and adulthood. Findings highlight adulthood as a particularly vulnerable time for loneliness and indicate a need for more support and social opportunities for autistic adults and adults with neurodevelopmental disabilities who wish to make more social connections. Lay abstract We know that many autistic people feel lonely, but we don’t know whether their loneliness changes over time. Our research study followed autistic people and people with other non-spectrum neurodevelopmental disabilities from childhood through young adulthood and asked them about their loneliness. While many people told us they felt lonely or very lonely, a sizable group also told us that they do not feel lonely. We found that people who reported feeling lonely earlier in life were likely to also report feeling lonely later in life. Overall, autistic people and people with other neurodevelopmental disabilities in our study became lonelier from adolescence to adulthood. People described multiple ways they cope with feeling lonely, such as distracting themselves or reaching out to connect with another person. People who used distraction tended to be lonelier than those who did not. Our findings tell us that there is a need for greater support of social connections for many autistic people as they become adults.

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Section: Discussionsupporting

confidence: 84%

A longitudinal study of loneliness in autism and other neurodevelopmental disabilities: Coping with loneliness from childhood through adulthood

Schiltz,

Gohari,

Park

et al. 2023

Autism

Self Cite

View full text Add to dashboard Cite

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A Longitudinal Mixed-Methods Characterization of Family Support from Adolescence to Young Adulthood in Autism and Other Developmental Disabilities

Schiltz,

Clarke,

Rosen

et al. 2023

J Autism Dev Disord

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Although caregiving responsibilities and need for support persist and evolve across the life course in families with autistic youth or youth with other developmental disabilities (DDs), little is known about support during their child’s adulthood years. Therefore, the present study used a mixed-methods approach to examine change and stability in formal and informal family support across the transition to adulthood. Caregivers of 126 individuals with autism or DDs completed a modified version of the Family Support Scale, including open-ended questions, at five time points from adolescence (age 16) into young adulthood (age 22). Caregivers reported that informal support from family members was the most frequently used, helpful, and valued source of support with relative stability across time. In contrast, the reported helpfulness, use, and value of formal support (e.g., professionals, schools) for caregivers declined over time. Qualitative content analyses revealed characteristics of highly valued support included support type (e.g., instrumental or emotional) and features of the support source (e.g., their understanding). There was a shift to valuing emotional support more than instrumental support over time, especially for caregivers of less able adults. Partnership and dependability emerged as highly valued features of the support source. These findings fit within a social convoy perspective and likely reflect the “service cliff” experienced by autistic individuals or people with DDs and their families. As social networks shrink over time and formal services are less readily available in adulthood, remaining sources of support, particularly from family members, become increasingly important.

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Caregivers and Coping: Well-being and coping styles among caregivers of young adults with developmental disabilities

Cited by 2 publications

References 35 publications

A longitudinal study of loneliness in autism and other neurodevelopmental disabilities: Coping with loneliness from childhood through adulthood

A longitudinal study of loneliness in autism and other neurodevelopmental disabilities: Coping with loneliness from childhood through adulthood

A Longitudinal Mixed-Methods Characterization of Family Support from Adolescence to Young Adulthood in Autism and Other Developmental Disabilities

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