Health Related Quality of Life: Perspectives From Youth with Autism Spectrum Disorders and Their Mothers

Background:  The perspective of adolescents with Autism Spectrum Disorders (ASD) on dimensions of their health related quality of life (HRQoL) has not received adequate attention in previous research. To understand changes in perceptions of HRQoL  over time and address needs in this population, both youths’ and parents’ perspectives need to be considered.

Objectives:  This study explored HRQoL in Alberta youth aged 13 to 18 years old with ASD. It also examined the concordance between the self-identified HRQoL scores of youth and those of their mothers, particularly in dimensions related to social functioning, including “Social Support/Peers” (quality of social relationships with friends/peers and feeling part of a group) and “Social Acceptance/Bullying” (feeling rejected or bullied by peers). This study lays a baseline for looking at changes over time.

Methods:  Sixteen participants with ASD (2 girls, 14 boys) and their mothers were recruited through an autism follow-up clinic and the Autism Society. Mean age was 15.6 years (SD= 1.7) and reading level was Grade 6 or higher based on parent report. Participants provided informed consent or assent. Mothers completed the Adaptive Behaviour Assessment System–II (ABAS-II) to describe the youth. Youth and their mothers completed the parent or child version of the KIDSCREEN-52 HRQoL standardized questionnaires which examine 10 HRQoL domains.  Results are compared with international normative data (Mean= 50, SD=10). Differences between parent and youth self-report were examined using paired t- tests with a correction for multiple t-tests. Correlations between parent-rated ABAS-II scores and HRQoL dimensions related to social functioning are explored.

Results:  Contrary to studies of HRQoL in adults with ASD, youth with ASD reported average quality of life for all 10 domains with scores within 1 SD of the mean. HRQoL was highest for School Environment and Self-perceptions and lowest for Social Support/ Peers and Moods/Emotions. Mothers rated their child’s HRQoL lowest in areas related most directly to social functioning with scores more than 1 SD below the mean in Social Support/Peers, and Social Acceptance/Bullying. They also rated Moods/Emotions in the same range. Interestingly, there was a significant difference between mothers’ and youths’ report in Social Acceptance/Bullying. In this domain, youth reported a mean of 45.6 (SD=12.6) and mothers reported a significantly lower mean of 37.7 (SD=.12.8). Surprisingly, mothers’ ABAS-II scaled scores in the social area were not significantly correlated with HRQoL social functioning dimensions as rated by either mothers or youths.

Conclusions:  Youth with ASD rate their HRQoL positively and within the average range in comparison to international norms. This suggests that the lower HRQoL reported in the literature may occur later than adolescence. Differences between parent and youth ratings in the dimension of Social Acceptance/Bullying suggests that youth are either less aware of bullying experiences or perceive them less negatively than their parents.  A larger sample size is needed to determine if there are any age related differences during adolescence and to further understand similarities and differences between mothers and their children.