A systematic review of social participation for adults with autism spectrum disorders: Support, social functioning, and quality of life☆
Introduction
Autism spectrum disorder (ASD) is considered a lifelong disorder, but over time, many individuals with ASD experience a pattern of modest to significant improvement across many of the core and related symptoms areas (e.g. Schall and McDonough, 2010, Seltzer et al., 2004). Billstedt, Gillberg, and Gillberg (2007) described this as a “toning down” of the typical traits of ASD in adulthood (p. 1108). However, while improvement in communication skills may be seen, the social use of language is generally more resistant to change, and interpreting social information and participating in reciprocal social interaction often continue to be areas of significant difficulty (Farley et al., 2009, Seltzer et al., 2004). These lingering social deficits impact adult outcomes and are thought to be significant contributors to the patterns of unemployment and underemployment, paucity of friendships and romantic relationships, and low rates of independent living that have repeatedly been shown for adults with ASD (e.g. Billstedt et al., 2007, Farley et al., 2009, Howlin et al., 2004, Marriage et al., 2009). Outcomes are highly variable (Levy & Perry, 2011), but even high functioning individuals with ASD often seem to “function well below the potential implied by their normal range intellect” (Marriage et al., 2009, p. 326).
Several studies have explored social functioning in adolescents and adults with ASD through looking at peer relationships, friendships, and patterns of participation in social activities. Baron-Cohen and Wheelwright (2003) reported many adults with ASD did have friendships, but they tended to be less close and had less importance for the adults with ASD compared to a group of neurotypical (NT) adults. These adults were also less likely to enjoy social interaction simply for the sake of social interaction. Orsmond, Krauss, and Seltzer (2004) reported their participants had difficulty defining the term friend; few were considered to have a true friendship, and even those who did often still reported feeling lonely. Liptak, Kennedy, and Dosa (2011) and Shattuck, Orsmond, Wagner, and Cooper (2011) also showed many adolescents and young adults with ASD did not tend to get together with friends or talk to friends via email, instant message, or telephone. Family support and higher family socioeconomic status (SES) as well as individual factors such as better social communication skills, higher functional cognitive skills, and lower levels of ASD symptom severity were related to higher levels of social participation. However, evidence suggests many individuals with ASD are interested in forming relationships with others (e.g. Humphrey & Lewis, 2008) and for many, lesser enjoyment of social interaction and lower levels of initiation may be related to a lack of the necessary skills rather than a lack of desire (e.g. Stokes, Newton, & Kaur, 2007). Furthermore, research suggests adolescents with ASD can take advantage of social support, for example, Humphrey and Lewis (2008) found the students in their study who had peer support and real friendships tended to have a much more positive sense of self. Similarly, Lasgaard, Nielsen, Eriksen, and Goosens (2010) found that while adolescents with ASD were lonelier than a control group, perceived social support from family, peers, or friends was protective against loneliness.
Interpreting the impact of low levels of participation in social activities on an individual is very subjective. Desired levels of social participation may differ substantially from person to person. However, many investigations of adult social outcomes have based their conclusions mainly on objective ratings of the number and quality of social relationships (e.g. Eaves and Ho, 2008, Howlin et al., 2004). Ruble and Dalrymple (1996) suggested that to measure outcomes for individuals with ASD by broad objective criteria might result in missing existing positive and individually satisfying aspects of their lives. Instead, they suggested investigating subjective quality of life (QoL), which the World Health Organization (1997) defines as “individuals’ perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns” (p. 1). From this perspective quality of outcome can be evaluated using a person-centered approach by looking at individual characteristics as well as the support characteristics that are present in that person's environment (Ruble & Dalrymple, 1996).
The concept of QoL has increasingly been used to describe outcomes in areas such as education and social services for individuals with disabilities (Schalock, 2004). Quality of life is a multidimensional construct and is generally considered to include the core domains of emotional well-being, interpersonal relations, material well-being, personal development, physical well-being, self-determination, social inclusion, and human and legal rights (Schalock, 2004). Due to the complex and multidimensional nature of QoL, Schalock (2004) discusses the importance of taking a systems approach (Bronfenbrenner, 1979) and using multiple measures, including objective methods such as rating scales or observation of engagement in daily activities, and subjective methods such as personal appraisal of satisfaction and happiness. Plimley (2007) suggested measurement should be via direct- rather than proxy-report whenever possible. Indeed Billstedt, Gillberg, and Gillberg (2011) found QoL in a sample of adolescents and adults with ASD was correlated with regular access to meaningful recreational activities, which could include things like gaming at a local game store, playing video games at home, or spending an evening watching clips on YouTube, the challenge being that meaningfulness for individuals with ASD can differ significantly from what NT caregivers might expect.
The purpose of this review was to investigate social participation and support facilitating improved participation and social functioning for adults with ASD. Social functioning deficits heavily impact a variety of areas. Learning more about support for social functioning and participation is important not only from the perspective that QoL may be positively impacted, but also because increased social participation and interaction with others may be a potential avenue for adults with ASD to build communication skills and social functioning (Schall & McDonough, 2010). Participation in the community need not involve social activity to be meaningful, but for the purposes of this review, participation was limited to a discussion of activities involving social interaction within the surrounding community at the mesosystem level. Bronfenbrenner (1979) defined mesosystem as the “interrelations among two or more settings in which the developing person actively participates (such as, for a child, the relations among home, school, and neighborhood peer group; for an adult, among family, work, and social life)” (p. 25). A preliminary model was developed to describe the observed relationship between social functioning, social participation, and QoL, where social functioning, or use of social skills in natural settings with friends, peers, or family, is considered to be bidirectionally related to social participation, and social participation is in turn bidirectionally related to QoL, primarily through the interpersonal relations and social inclusion domains (see Fig. 1). While adolescents and adults with ASD have often been treated together in the literature, the issues faced by families change significantly as individuals with ASD progress through adolescence, transition away from the school system, and enter adulthood (e.g. Taylor & Seltzer, 2011). Therefore, this review focused on literature related primarily to adults.
Section snippets
Inclusion criteria
The following inclusion criteria were defined: (a) the study was primarily about adults (at least 85% of the participants were no longer receiving school-based services, and in cases where this information was not specified, the youngest participant was at least 17 years of age and the mean was at least 18 years of age) who had been diagnosed with an ASD (in the case where individuals from different diagnostic groups were compared, the ASD group comprised at least 25% of the total population
Results
Thirteen publications met the inclusion criteria. One of these used mixed methods (Jantz, 2011) and was considered as two separate studies, bringing the total to 14. Thematic analysis revealed all of the studies discussed support, either from the perspective of social functioning or QoL. Studies were therefore divided into these latter two groups, and subthemes were identified within each group. Independence and community participation were not major themes. Independence is explored briefly
Participant characteristics
The majority of participants were adults between the ages of 19–44, who were fairly high functioning with cognitive skills at least in the average range, and relatively low severity of ASD symptoms. However, overall levels of independence were fairly low and few participants lived independently. The picture with regard to education was highly variable. Some participants had earned undergraduate or graduate degrees or were still actively pursuing postsecondary education, whereas others had not
Conclusion
Informal social support was shown to be an important contributor to both social functioning and QoL. Many adults with ASD discussed feeling lonely and isolated from social contact with others, and informal support as well as formal membership in support or social skills groups may help reduce loneliness and isolation, potentially improving QoL by extension. An interrelationship between formal and informal support was suggested, and further investigation of effective group models that integrate
Acknowledgments
The author wishes to acknowledge Erinn Finke and Carol Miller at The Pennsylvania State University for providing invaluable feedback and suggestions on initial drafts of this paper.
References1 (43)
- et al.
Outcomes in adolescents and adults with autism: A review of the literature
Research in Autism Spectrum Disorders
(2011) - et al.
Review of gender differences in core symptomatology in autism spectrum disorders
Research in Autism Spectrum Disorders
(2011) - et al.
The friendship questionnaire: An investigation of adults with Asperger syndrome or high-functioning autism, and normal sex differences
Journal of Autism and Developmental Disorders
(2003) - et al.
Autism in adults: Symptom patterns and early childhood predictors. Use of the DISCO in a community sample followed from childhood
Journal of Child Psychology and Psychiatry
(2007) - et al.
Aspects of quality of life in adults diagnosed with autism in childhood: A population-based study
Autism
(2011) The ecology of human development: Experiments by nature and design
(1979)- et al.
Evaluating non-randomised intervention studies
Health Technology Assessment
(2003) - et al.
The feasibility of creating a checklist for the assessment of the methodological quality both of randomised and non-randomised studies of health care interventions
Journal of Epidemiology and Health
(1998) - et al.
Young adult outcome of autism spectrum disorders
Journal of Autism and Developmental Disorders
(2008) - et al.
Psychosocial functioning in a group of Swedish adults with Asperger syndrome or high-functioning autism
Autism
(2003)
Twenty-year outcome for individuals with autism and average or near-average cognitive abilities
Autism Research
Social skills training for young adults with high-functioning autism spectrum disorders: A randomized controlled pilot study
Journal of Autism and Developmental Disorders
Effects of a leisure programme on quality of life and stress of individuals with ASD
Journal of Intellectual Disability Research
Outcomes of a social and vocational skills support group for adolescents and young adults on the autism spectrum
Focus on Autism and Other Developmental Disabilities
Adult outcome for children with autism
Journal of Child Psychology and Psychiatry
The potential effectiveness of social skills groups for adults with autism
Autism
A peer-delivered social interaction intervention for high school students with autism
Research and Practice for Persons with Severe Disabilities
Increasing independence in autism spectrum disorders: A review of three focused interventions
Journal of Autism and Developmental Disorders
“Make me normal”: The views and experiences of pupils on the autistic spectrum in mainstream secondary schools
Autism
Support groups for adults with Asperger syndrome
Focus on Autism and Other Developmental Disabilities
The quality of life of young men with Asperger syndrome: A brief report
Autism
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This paper was completed in partial fulfillment of course requirements for the Ph.D. program in the Department of Communication Sciences and Disorders at The Pennsylvania State University in University Park, PA.
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References marked with an asterisk indicate studies included in the systematic review.