“I don’t feel different. But then again, I wouldn’t know what it feels like to be normal”: Perspectives of Adolescents with Autism Spectrum Disorder
There is minimal research regarding the personal experiences and perceptions of youth with autism spectrum disorder (ASD). Yet, the positive and negative perceptions that youth internalize about their diagnoses are crucial, as they may have a strong impact on individuals’ self-concept and well-being. This paper utilizes mixed methods to describe the perceptions of 38 adolescents with ASD about their diagnoses, as elicited via semi-structured interviews. Quantitative analyses explore links between youths’ perceptions and other aspects of their social–emotional well-being. Implications are highlighted regarding the importance of shifting the narrative that individuals with ASD develop about themselves and their diagnoses.
KeywordsSelf-perceptions Adolescence ASD diagnosis Well-being
This paper was based on the activities of the Collaborative Family Study, supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development, Grant Number 34879-1459 (Drs. Bruce L. Baker, Jan Blacher). We are grateful to our staff and doctoral student colleagues who have been part of this project throughout the years, as well as the children and their families for their dedication to this research. Exploratory analyses of a portion of these data were presented at the 2016 International Meeting for Autism Research.
All authors contributed to the study conception and design. Data coding and analysis were performed by LDB and CTM. All authors contributed to the initial manuscript by writing sections of the initial draft and editing the full manuscript. All authors read and approved the final manuscript.
Compliance with Ethical Standards
Conflict of interest
The authors declare that they have no conflict of interest.
All procedures performed in this study involving human participants were in accordance with the Ethical Standards of the Institutional Research Committees (University of California Los Angeles and University of California Riverside) and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.
Informed consent and assent was obtained from participating parents and youth, respectively. Names of participants were changed and ages included only in years to protect the anonymity of individuals quoted.
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