Daily Routine and Autonomy: Identifying Independence and Desire for Autonomy in Daily Activities Among Adolescents With Autism Spectrum Disorder

PURPOSE: The purpose of this study was to evaluate the internal consistency reliability and concurrent and construct validity of the Daily Routine and Autonomy (DRA) questionnaire for adolescents with ASD.

RATIONALE AND BACKGROUND: Autism spectrum disorder (ASD) is a broad neurodevelopmental disorder characterized by social deficits and stereotypical behaviors (American Psychiatric Association, 2013). Assessing the daily functioning of people with ASD is critical for evaluating the severity of their ASD and their health and well-being. Adolescents with ASD show regression in independence and autonomy and dependence on caregivers, and most of them do not maintain an independent life as adults. There is a conspicuous lack of assessment tools for adolescents with ASD that focus on the transition to mature, independent life. A self-report questionnaire that assesses independence in daily activities and the desire for autonomy would enable occupational therapists to develop client-centered treatment for adolescents with ASD.

METHOD: This quantitative and descriptive study examined the level of independence and desire for autonomy among 61 adolescents with ASD aged 11–19 yr (M = 14.56, SD = 1.61) to assess the reliability and validity of the DRA. Participants completed the DRA, and their parents completed a demographic questionnaire and the Participation and Environment Measure for Children and Youth (PEM–CY; Coster et al., 2011), used to examine concurrent validity. Factor analysis was performed to determine the DRA’s factors, and reliability tests using Cronbach’s alpha and correlations between the factors were made. Pearson correlation was performed with Bonferroni correction with the PEM–CY to test the concurrent validity of the DRA.

RESULTS: Internal reliability of α = .75 for all items of independence and of α = .91 for all items of desire for autonomy was found. Factor analysis classified the items into three factors: (1) basic activities of daily living (ADLs) and punctuality, with internal reliability of α = .85; (2) complex or multistage daily functions, with internal reliability of α = .75; and (3) free time activities and social interactions, with internal reliability of α = .72. Six of the 31 items were excluded because of a loading level <35. The adolescents with ASD reported that their level of independence in basic ADLs and punctuality was higher than their level of independence in free time activities and social interactions and in complex daily functions. Their greatest desire for autonomy was in activities in which they were more independent. In the validity examination, the main correlations were between the PEM–CY community participation characteristics and the DRA independence and desire for autonomy levels in complex daily activities and in free time activities and social interactions (rs = –.28 to –.43).

CONCLUSION: The DRA can provide critical information about the independence and desire for autonomy of adolescents with ASD. In this study, adolescents with ASD reported low independence in complex daily activities. Concurrently, they reported higher motivation for autonomy in factors that they indicated as performed independently. Integration is part of the natural and basic rights of people with ASD, and public resources necessary to support them decline when they are more independent. The DRA is a reliable and valid questionnaire that can promote goal setting focused on independent living in the community. It is important to further explore and develop assessments and interventions for this population.

References

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Press.

Coster, W., Law, M., Bedell, G., Teplicky, R., & Lin, C. Y. (2011). Participation and Environment Measure for Children and Youth. Hamilton, Ontario, Canada: CanChild/McMaster University.