Adult siblings who have a brother or sister with autism: between-family and within-family variations in sibling relationships

Prior research on the sibling relationship in the context of autism spectrum disorder (ASD) has included only one sibling per family. We used multi-level modeling to examine aspects of the sibling relationship in 207 adults who have a brother or sister with ASD from 125 families, investigating variability in sibling relationship quality and pessimism within and between families. We found that there was greater variability in aspects of the sibling relationship with the brother or sister with ASD within families than between families. Sibling individual-level factors were associated with positive affect in the sibling relationship, while family-level factors were associated with the sibling’s pessimism about their brother or sister’s future. The findings illustrate the unique experiences of siblings within families.This research was supported in part by a grant from the National Institute on Aging (R01 AG08768) to Marsha Mailick and support from the Waisman Center Core Grant (U54 HD090256). The authors are appreciative of the opportunity to collaborate with Dr. Mailick. (R01 AG08768 - National Institute on Aging; U54 HD090256 - Waisman Center Core Grant)Accepted manuscript2019-12-3

Parents' future visions for their autistic transition-age youth: hopes and expectations

Researchers have documented that young adults with autism spectrum disorder have poor outcomes in employment, post-secondary education, social participation, independent living, and community participation. There is a need to further explore contributing factors to such outcomes to better support successful transitions to adulthood. Parents play a critical role in transition planning, and parental expectations appear to impact young adult outcomes for autistic individuals. The aim of this study was to explore how parents express their future visions (i.e. hopes and expectations) for their autistic transition-age youth. Data were collected through focus groups and individual interviews with 18 parents. Parents' hopes and expectations focused on eight primary domains. In addition, parents often qualified or tempered their stated hope with expressions of fears, uncertainty, realistic expectations, and the perceived lack of guidance. We discuss our conceptualization of the relations among these themes and implications for service providers and research.Accepted manuscrip

Participation in Social Activities among Adolescents with an Autism Spectrum Disorder

Background: Little is known about patterns of participation in social activities among adolescents with an autism spectrum disorder (ASD). The objectives were to report nationally representative (U.S.) estimates of participation in social activities among adolescents with an ASD, to compare these estimates to other groups of adolescents with disabilities, and examine correlates of limited social participation. Methods and Findings: We analyzed data from wave 1 of the National Longitudinal Transition Study 2, a large cohort study of adolescents enrolled in special education. Three comparison groups included adolescents with learning disabilities, mental retardation, and speech/language impairments. Adolescents with an ASD were significantly more likely never to see friends out of school (43.3%), never to get called by friends (54.4%), and never to be invited to social activities (50.4%) when compared with adolescents from all the other groups. Correlates of limited social participation included low family income and having impairments in conversational ability, social communication, and functional cognitive skills. Conclusions: Compared with prior research, our study significantly expands inquiry in this area by broadening the range of social participation indicators examined, increasing the external validity of findings, focusing on the under-studied developmental stage of adolescence, and taking an ecological approach that included many potential correlates of social participation. There were notable differences in social participation by income, a dimension of social context seldo

Social participation of families with children with autism spectrum disorder in a science museum

This article describes a qualitative research study undertaken as a collaboration between museum and occupational therapy (OT) researchers to better understand museum experiences for families with a child or children impacted by autism spectrum disorder (ASD). Inclusion for visitors with ASD is an issue that museums are increasingly considering, and the social dimension of inclusion can be particularly relevant for this audience. The construct of social participation, used in OT, provides a promising avenue for museum professionals to think about inclusion. Social participation situates social and community experiences within the context of peoples’ diverse motivations and the strategies they use to navigate environments. This study took these multiple factors into account when observing families’ museum visits—including analysis of their motivations for visiting, environmental features that influenced their visit, family strategies used before and during the visit, and the families’ definitions of a successful visit. Learning more about these factors that are associated with social participation can inform future efforts to improve museum inclusion for families with children with ASD

The Symptoms of Autism Spectrum Disorders in Adolescence and Adulthood

This article describes the symptoms of autism spectrum disorders (ASD) manifested by 405 individuals between the ages of 10 and 53 years, all of whom had an ASD diagnosis. Data were collected using the Autism Diagnostic Interview–Revised (ADI-R) to assess the pattern of autism symptoms in adolescence and adulthood. Findings include that although virtually all sample members met the criteria for Autistic Disorder earlier in their childhood, just over half (54.8%) would have met autism criteria if current scores were used to complete the diagnostic algorithm; that adolescents were more likely to improve in the Reciprocal Social Interaction domain than the adults, whereas the adults were more likely to improve in the Restricted, Repetitive Behaviors and Interests domain, and there were no differences in severity of symptoms between cohorts in the Communication domain; and that individual symptoms showed unique trajectories, with greatest symptom abatement between lifetime and current ADI-R ratings for speaking in at least three-word phrases and the least symptom improvement for having friendships. Findings were interpreted in the context of life course development, reformulations of diagnostic criteria, and changing service contexts for individuals with autism spectrum disorders.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/44621/1/10803_2004_Article_474978.pd

Are autistic children more vulnerable online? Relating autism to online safety, child wellbeing and parental risk management

Abstract Many autistic children are active online users. Research suggests that they are subject to distress and poor wellbeing following online safety threats. However, it is unclear if autistic children are more likely to experience online safety risks compared with non-autistic children. We conducted a parental online safety survey. Two groups of parents (autistic children, n=63; non-autistic children, n= 41) completed questionnaires about their child's online safety behaviours, wellbeing, and their own parental self-efficacy (PSE). Our results highlight that autistic children experience significantly more online safety risks than non-autistic children and poorer wellbeing than autistic children who did not experience online safety risks. Parents of autistic children reported carrying out significantly less risk management and reported poorer PSE than parents of non-autistic children. Having an autistic child and parental online safety knowledge were significant predictors of PSE. These results will help inform the co-design of interventions to protect autistic children online

Cognitive correlates of early music instruction.

Cognitive correlates of early music instruction