Longitudinal Predictors of Outcomes for Adults With Autism Spectrum Disorder

Abstract

To generate an evidence-based understanding of longitudinal predictors of social outcomes (i.e., employment, social relationships/participation, independent living) of adults with autism spectrum disorder (ASD), we conducted a systematic literature review of publications since 2000. Twelve publications deriving from eight study samples fit inclusion/exclusion criteria for the review. In these publications, statistically significant predictors of social outcomes fell into five categories: (a) personal characteristics, (b) individual functioning, (c) family context, (d) services, and (e) other factors (i.e., peer influence, health status). However, only two studies demonstrated high methodological quality, and only one category of predictors-individual functioning-was identified across multiple study samples. To inform practices for youth with ASD, there remains a need for high-quality outcome research related to adults with ASD to better understand predictors, especially related to environmental factors such as related to the family and services received.

An international qualitative study of functioning in autism spectrum disorder using the World Health Organization international classification of functioning, disability and health framework

“…Similarly, all chapters from the environmental factors component were identified to be important in ASD, ranging from provision of education services and support from immediate family members to the use of different products and technology in daily life (e.g., cell‐phone, computer). The results here corroborate previous research findings, which show that environmental factors can play a key role in moderating ASD symptoms and facilitate better functional outcomes in individuals with ASD [Dawson et al, ; Kirby, Baranek, & Fox, ]. Contrary to our previous two preparatory studies [de Schipper et al, ], this study yielded a wider range of environmental factors, suggesting that contextual barriers and facilitators are more significant to functioning among caregivers and diagnosed individuals compared to the existing literature and expert opinion.…”

Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability: Lessons Learned and Recommendations

“…(3) Discussing each construct so that we can have a shared understanding of what it means; (4) Identifying existing instruments for each construct; (5) Selecting among available instruments (or deciding that none are acceptable and that we need to create a new measure); (6) Assessing the necessary adaptations for each instrument; (7) Collaboratively modifying prefaces, items, or response options, as needed; (8) Adding ''hotlink'' definitions where necessary to clarify or provide examples of terms and constructs; (9) Creating new measures, when needed, in partnership with autistic adults; (10) Considering the appropriateness of creating proxy report versions of each adapted measure; and (11) Assessing the adapted instruments' psychometric properties. Introduction D espite autism being a lifelong disability, the vast majority of autism research, advocacy, and services have focused on children.…”

“…1 Not surprisingly, reviews on almost any topic in the adult autism literature-be it phys-ical or mental health, health care, employment, social services, social functioning, or other life outcomes-highlight the paucity of data on adulthood and the presence of important methodological concerns about including autistic adults in research. [2][3][4][5][6][7][8][9] Accordingly, in the United States, the Interagency Autism Coordinating Committee has called for increased research on adult services in its strategic plan. 1 However, accurately evaluating the effectiveness of services interventions depends on the existence of validated patient-reported outcome measures (PROMs).…”

Predictors of mental health and well‐being in employed adults with autism spectrum disorder at 12‐month follow‐up

“…Individuals with Autism Spectrum Disorder (ASD) are recognized as having generally poor outcomes in adulthood [Howlin, 2000[Howlin, , 2013Kirby, Baranek, & Fox, 2016;Levy & Perry, 2011;Magiati, Tay, & Howlin, 2014]. This is evidenced by a range of indices of negative well-being including social isolation and lack of participation [Howlin, 2000[Howlin, , 2013Howlin, Moss, Savage, & Rutter, 2013], high incidence of co-occurring mental health problems [Croen et al, 2015;Eaves & Ho, 2008;Hofvander et al, 2009;Hudson, Hall, & Harkness, 2018;Simonoff et al, 2008;Uljarevi c et al, 2017;van Steensel, Bogels, & Perrin, 2011], including suicidal ideation and behavior [Cassidy et al, 2014;Hedley, Uljarevi c, Foley, Richdale, & Trollor, 2018;Hirvikoski et al, 2016;Zahid & Upthegrove, 2017], and increased risk of premature mortality [Hirvikoski et al, 2016].…”