Improving Retention of Diverse Samples in Longitudinal Research on Developmental Disabilities.

Developmental disabilities (DD) research has depended on volunteer and clinical samples, with limited racial/ethnic diversity. This study focused on improving diversity and retention in DD research. The sample included 225 parents with a child with DD and 4,002 parents without children with DD from diverse racial/ethnic groups, drawn from Midlife in the United States, a national longitudinal study. Unexpectedly, parents of children with DD from diverse racial/ethnic groups were more likely to participate longitudinally than other groups. Relative participant payment was a factor that enhanced their likelihood of retention. This research illustrates how large national studies can be leveraged to increase representativeness and ongoing participation of diverse racial/ethnic groups, especially in combination with other factors, such as parenting a child with DD.

Impact of Working Together for adults with autism spectrum disorder: a multifamily group intervention.

BACKGROUND: Adults with autism spectrum disorder (ASD) have lower engagement in their communities, higher rates of unemployment/underemployment, and continued difficulties with challenging behavior compared to their neurotypical peers. Multi-family psychoeducation emphasizes education and problem-solving with the goal of improving these outcomes for the individual with the disability. METHODS: Using a randomized waitlist control design, the present study evaluated a multi-family group psychoeducation intervention, Working Together, for adults on the autism spectrum without intellectual disability (n = 40). Five waves of data were collected at 3-month intervals. In this design, families in the intervention condition participated in intervention during the 6 months between baseline and time 3 data collection; the waitlist control condition received the intervention immediately after the time 3 data collection. We compared these two conditions, intervention group (n = 20) vs waitlist control group (n = 20), on key outcomes for the adults with ASD: engagement in work-related activities, engagement in meaningful activities, and behavior problems. RESULTS: Results indicated medium to large effect sizes associated with the Working Together intervention across key outcomes, including adults on the spectrum experiencing significant increases in meaningful activities and decreases in internalizing problems. Although increases in work-related activities were not statistically significant, an observed one-half of a standard deviation difference from before to after the intervention indicated clinically significant change. We also found maintenance of the treatment effect through 6 months post-treatment for the intervention group and replication of the treatment effect within the control group after they received the intervention. CONCLUSION: Working Together is a promising multi-family group psychoeducation intervention designed to improve functioning during adulthood. These findings highlight the need for more intervention services research during adulthood and specifically the need for family-centered supports.

Student, Educator, and Parent Perspectives of Self-Determination in High School Students with Autism Spectrum Disorder.

Self-determination refers to an individual being a causal agent in their daily activities, including the ability to express their own needs, interests, and wants, make choices, and set goals. Self-determination is critical during adolescence and has been linked to positive educational outcomes in individuals with disabilities. Few studies have characterized the measurement of self-determination in adolescents with autism spectrum disorder (ASD). The purpose of the current study was to (a) examine the agreement across the American Institutes for Research Self-Determination Scale (Wolman et al., AIR Self-determination scale and user guide. Palo Alto, CA: American Institute for Research, 1994) student, educator, and parent forms for high school students with ASD, and (b) examine student and family predictors of self-determination. Participants included adolescents with ASD (N = 547, mean chronological age = 16.1 years, SD = 1.4 years), their parents, and educators. Student reports did not correspond to parent or educator reports, and parent and educator reports were in moderate agreement. Adaptive behavior was a significant predictor of self-determination across reporters, highlighting the significance of adaptive behavior skills during high school. In addition to promoting adaptive behavior, supporting family empowerment, and reducing family burden may help to increase self-determination in high school students with ASD. LAY SUMMARY: Self-determination refers to the abilities and opportunities for students to make choices, plans, and set goals. The current study examined self-determination from multiple perspectives in a large, diverse sample of high school students with ASD. Students, parents, and their teachers each completed a questionnaire on self-determination and had little to some agreement across reporters. Providing support to families and help for students to increase independent skills may promote self-determination.

The Cultural Adaptation of a Transition Program for Latino Families of Youth with Autism Spectrum Disorder.

During the transition to adulthood, effective and culturally relevant supports are critical for families of youth with autism spectrum disorder (ASD). There is a dearth of documented program development and research on supports for Spanish-speaking Latino families during this life stage. The present work describes the cultural adaptation process of an evidence-based transition program for Latino families of youth with ASD. A model of the actions necessary to meaningfully conduct a cultural adaptation in this context is described. After implementing the culturally adapted program titled Juntos en la Transición with five Spanish-speaking families, parents reported high social validity of the program through surveys and interviews. The cultural adaptation process followed in this work is important for the further development of programs that address the transition needs of Latino youth with ASD and their families. Our impressions may also be useful to those who aim to develop culturally sensitive and ecologically valid multifamily group intervention programs for families from cultural and linguistic minority groups.

Durante la transición a la adultez, las adaptaciones eficaces y culturalmente relevantes son fundamentales para las familias de jóvenes con trastorno del espectro autista (TEA). Hay una escasez de investigaciones y desarrollo de programas documentados sobre las adaptaciones para las familias latinas de habla hispana durante esta etapa de la vida. El presente trabajo describe el proceso de adaptación cultural de un programa de transición de base fáctica para familias latinas de jóvenes con TEA. Se describe un modelo de las medidas necesarias para llevar a cabo significativamente una adaptación cultural en este contexto. Después de implementar el programa adaptado culturalmente y titulado Juntos en la Transición con cinco familias de habla hispana, los padres informaron una alta validez social del programa mediante encuestas y entrevistas. El proceso de adaptación cultural seguido en este trabajo es importante para el futuro desarrollo de programas que aborden las necesidades de transición de los jóvenes latinos con TEA y sus familias. Nuestras impresiones también pueden ser útiles para aquellos que desean desarrollar programas de intervención en grupos multifamiliares ecológicamente válidos y culturalmente adaptados para familias de grupos culturales y lingüísticos minoritarios.

Mortality in individuals with autism spectrum disorder: Predictors over a 20-year period.

Research has shown that individuals with autism spectrum disorder have higher rates of health problems throughout childhood, adolescence, and adulthood, and that this may result in elevated risk of early mortality. This study reported the rate, timing, and causes of death in a large community-based cohort of adolescents and adults with autism spectrum disorder (n = 406) over a 20-year period (1998-2018) and identified predictors of mortality. Over this period, 6.4% of individuals died at an average age of 39 years. Causes of death included chronic conditions (such as cancer and heart disease), accidents (such as choking on food and accidental poisoning), and health complications due to medication side effects. Even after controlling for age and health status, significant predictors of mortality were early childhood levels of impairments in social reciprocity and high levels of functional impairments at the start of the study period. The results suggest the importance of social engagement and functional self-sufficiency across the life course, as well as adequate access to health care for individuals with autism spectrum disorder.

Sex differences in employment and supports for adults with autism spectrum disorder.

This study explored sex differences in employment, reasons for unemployment, benefits, and supports among a large, international sample of adults with autism spectrum disorder. The sample included 443 adults with autism spectrum disorder (60% female; 74% residing in the United States) who consented to be part of an autism research registry and completed an Internet survey. Outcome variables included current employment status, number of hours working, number of jobs in the past 5 years, reasons for unemployment, as well as the number of benefits received and the amount of financial support currently being received from families of origin. Using multiple regression models, we found that males and females were working at similar rates. Females were more likely than males to say that their unemployment was a result of choosing to withdraw from the labor market. Similar percentages of males and females reported receiving some form of benefits or family support, but of those receiving benefits/family support, males received more than females. These results are consistent with other studies finding subtle, but potentially important sex differences in life-course outcomes of individuals with autism spectrum disorder.

Growth mixture models of adaptive behavior in adolescents with autism spectrum disorder.

This study examined growth trajectories of teacher-reported adaptive behavior in a diverse sample of adolescents with autism spectrum disorder. The participants were 244 adolescents between the ages of 14 and 21 years who were assessed at up to four time points across two and a half years of high school. Demographic variables (age, sex, race, maternal education), phenotypic characteristics (intelligence quotient, autism severity) and school factors (location of the school, school quality) were collected. Growth mixture modeling was used to identify distinct classes of growth trajectories in communication, daily living skills, and socialization domains of adaptive behavior. Two distinct classes were identified for each domain. The first class had moderately low adaptive behavior scores and demonstrated growth of adaptive behavior over time and the second class had low adaptive behavior scores and did not demonstrate change over time. Adolescents within the moderately low adaptive behavior classes were younger at enrollment in the study, had higher IQs, and lower autism symptom severity. Logistic regressions were performed, and aspects of school quality predicted the likelihood of being in the moderately low classes above and beyond autism symptoms.

Participation in recreational activities buffers the impact of perceived stress on quality of life in adults with autism spectrum disorder.

As the number of adults with autism spectrum disorder (ASD) grows, the need to identify modifiable correlates of positive outcomes and quality of life (QoL) gains in importance. Research indicates that perceived stress is significantly correlated with QoL in adults with ASD. Studies in the general population of individuals without disabilities indicate that greater participation in social and recreational activities may lessen the negative impact of perceived stress on well-being, and this association may also hold among adults with ASD. We hypothesized that: (1) perceived stress would be negatively associated with QoL; and (2) higher frequency of participation in social activities and recreational activities would moderate the relationship between perceived stress and QoL. We used data collected from 60 adults with ASD aged 24-55 and their mothers to address our hypotheses. Findings indicate that adults with ASD with higher perceived stress are likely to have poorer QoL. Furthermore, greater participation in recreational activities buffers the impact of perceived stress on QoL, but no buffering effect was observed for participation in social activities. These findings suggest that interventions and services that provide supports and opportunities for participation in recreational activities may help adults with ASD manage their stress and lead to better QoL. Autism Res 2017, 10: 973-982. © 2017 International Society for Autism Research, Wiley Periodicals, Inc.