Abstract
Date Presented 03/21/24
There is a high agreement between self- and parental report of adolescents' autism identity perception. Promoting positive autism identity when working with adolescents and parents is crucial for improved quality-of-life outcomes.
Primary Author and Speaker: Liron Lamash
Additional Authors and Speakers: Sonya Meyer, Eynat Gal
Contributing Authors: Yael Gutman
This study aimed to examine the self and parent-report autism identity profiles of autistic adolescents and explore the relationship between autism identity perception, participation, and quality of life. Adolescence involves a crucial task of self-identity development. This process is especially challenging for autistic individuals due to their social and communication deficits. Understanding the impact of the autism label on identity is essential. Participation is integral to human development, and quality of life is influenced by participation. Autistic adolescents experience lower participation and quality of life than other populations, with self-identity linked to psychological well-being. Thirty autistic adolescents (90% male) aged 12-21 (Mage=16.27, SD=1.41) and their parents participated in this cross-sectional study. Both completed the Illness Identity Questionnaire (IIQ; Oris et al., 2016) for autism. Adolescents completed questionnaires to assess participation (CASP; Bedell, 2009) and quality of life (PedsQL; WHO, 2012). Descriptive statistics, t-tests, Cohen’s d, repeated measures MANOVA, and Pearson correlations were conducted to analyze the data. Autistic adolescents showed a stronger positive identity perception (M=3.30, SD=.91) than a negative (M=2.77, SD=.77) one, with ‘acceptance’ being the most prominent aspect (M=3.81, SD=1.09). No significant differences were found between self-report and parental reports of autism identity perception (t(29) =-.47, p=NS, d=.06). Autism identity perception significantly correlated with quality of life (r=0.39, p=.05), yet not with participation (r=.13, p=NS). Working with autistic adolescents and their parents to promote quality of life is possible. Promoting positive autism identity is crucial during this critical developmental stage. Therefore, it is essential for parents, teachers, therapists, researchers, and stakeholders to recognize and encourage positive autism identity.
References
Oris, L., Rassart, J., Prikken, S., Verschueren, M., Goubert, L., Moons, P., … Luyckx, K. (2016). Illness identity in adolescents and emerging adults with type 1 diabetes: Introducing the illness identity questionnaire. Diabetes Care, 39(5), 757–763. https://doi.org/10.2337/dc15-2559
Bedell, G. (2009). Further validation of the Child and Adolescent Scale of Participation (CASP). Developmental Neurorehabilitation, 12(5), 342–351. https://doi.org/10.3109/17518420903087277
World Health Organization (2012). WHOQOL user manual. World Health Organization, Geneva.
