Correlates of Self-Reported Quality of Life in Verbally-Able Young Adults with Autism Spectrum Disorder

Friday, May 13, 2016: 5:30 PM-7:00 PM
Hall A (Baltimore Convention Center)
K. M. Frost1, L. A. Pepa2, K. Gotham3 and C. Lord4, (1)Center For Autism and the Developing Brain, White Plains, NY, (2)Rutgers University, Smithtown, NY, (3)Vanderbilt University, Nashville, TN, (4)Weill Cornell Medical College, White Plains, NY

Although adults with autism spectrum disorder (ASD) demonstrate a range of abilities, many remain dependent on their families or other support services in adulthood (Howlin, Goode, Hutton, & Rutter, 2004; Taylor & Seltzer, 2011). Studies of ASD in adulthood often focus on symptom profiles and independence. Additionally, it is important to consider an individual’s perceived quality of life. Quality of life is an aggregate of various factors, such as interpersonal relations, material and emotional well-being, social inclusion, and rights (Schalock, 2004). While previous research has examined this construct for caregivers, few studies to date have focused on quality of life for individuals with ASD (Renty & Roeyers, 2006; Kamio, Inada & Koyama, 2012).


This study aims to characterize factors related to self-reported quality of life in a transition-age sample of verbally-able young adults with ASD.


Participants were drawn from a well-characterized sample of individuals who were suspected of having autism at age two, and have been followed into young adulthood (Lord, Risi, DiLavore, Schulman, Thurm & Pickles, 2006; Anderson, Liang, & Lord, 2014). The following data is derived from questionnaires and in-person assessments collected at approximately age 18. In addition to standardized measures of autism symptoms (Autism Diagnostic Observation Schedule; ADOS), cognitive ability, and adaptive functioning (Vineland Adaptive Behavior Scales; VABS), participants completed self-report measures, including the Quality of Life Questionnaire (QoLQ; Schalock & Keith, 1993), the Social Interests and Habits Questionnaire (SIH; Gotham, Bishop, Brunwasser, & Lord, 2014), and the Social Support Questionnaire (SSQ; Sarason, Sarason, Shearin, & Pierce, 1987). Parents completed the Family Support Scale (FSS; Dunst, Jenkins, & Trivette, 1984), as well as a questionnaire about the participant’s service use. Participants were included in the present study if they were verbally fluent, and able to complete self-report questionnaires on their quality of life (n=23).


Scores on the QoLQ were significantly positively correlated to verbal IQ (r=0.55) and all domains of the VABS (r=0.45 to 0.63), and negatively related the ADOS Calibrated Severity Scores (CSS) in restricted and repetitive behaviors (RRB) (r=-0.60). Additionally, youth quality of life was positively related to amount of social activity on the SIH (r=0.65) and satisfaction with social support on the SSQ (r=0.70), and negatively related to service use (r=-0.43). No significant relationship was found between FSS and QoLQ (r=-0.07). When controlling for effects of verbal IQ, QoLQ scores remained significantly related to ADOS RRB severity scores and VABS communication scores, in addition to social activity (SIH) and satisfaction with social support (SSQ).


Results suggest that a combination of factors, including fewer repetitive behaviors, higher verbal intelligence, stronger adaptive skills, and increased social activity are associated with greater self-reported quality of life in young adults with ASD. These findings underscore the importance of access to social activity and support as individuals enter adulthood. It also suggests that self-reported quality of life is an important outcome measure in this population, and one that may reflect an integration of autism symptom level, social and adaptive functioning.