“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

  • Lauren D. BerkovitsEmail author
  • Christine T. Moody
  • Jan Blacher
Original Paper


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.


Self-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.

Author Contributions

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.

Ethical Approval

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

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.


  1. Achenbach, T. M., & Rescorla, L. A. (2001). Manual for ASEBA school-age forms and profiles. Burlington, VT: University of Vermont, Research Center for Children, Youth, and Families.Google Scholar
  2. American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: American Psychiatric Association.CrossRefGoogle Scholar
  3. Baker, B. L., & Blacher, J. (2019). Brief report: Behavior disorders and social skills in adolescents with autism spectrum disorder: Does IQ matter? Journal of Autism and Developmental Disorders. Scholar
  4. Blacher, J., Baker, B. L., & Berkovits, L. (2013). Family perspectives on child disability: Views from the sunny side of the street. In M. L. Wehmeyer (Ed.), Oxford handbook of positive psychology and disability (pp. 166–181). New York: Oxford University Press, Inc.Google Scholar
  5. Brechwald, W. A., & Prinstein, M. J. (2011). Beyond homophily: A decade of advances in understanding peer influence processes. Journal of Research on Adolescence,21(1), 166–179. Scholar
  6. Brosman, M., & Mills, E. (2016). The effect of diagnostic labels on the affective responses of college students towards peers with ‘Asperger’s Syndrome’ and ‘Autism Spectrum Disorder’. Autism,20, 388–394. Scholar
  7. Calder, L., Hill, V., & Pellicano, E. (2013). “Sometimes I want to play by myself”: Understanding what friendship means to children with autism in mainstream primary schools. Autism,17(3), 296–316. Scholar
  8. Constantino, J. N. (2002). The social responsiveness scale. Los Angeles: Western Psychological Services.Google Scholar
  9. Constantino, J. N., Przybeck, T., Friesen, D., & Todd, R. D. (2000). Reciprocal social behavior in children with and without pervasive developmental disorders. Journal of Developmental and Behavioral Pediatrics,21(1), 2–11. Scholar
  10. Cunningham, S., Gunn, T., Alladin, A., & Cawthorpe, D. (2008). Anxiety, depression and hopelessness in adolescents: A structural equation model. Journal of the Canadian Academy of Child and Adolescent Psychiatry,17(3), 137.PubMedPubMedCentralGoogle Scholar
  11. Daley, T. C., & Weisner, T. S. (2003). “I speak a different dialect”: Teen explanatory models of difference and disability. Medical Anthropology Quarterly,17(1), 25–48. Scholar
  12. DePape, A.-M., & Lindsay, S. (2016). Lived experiences from the perspective of individuals with autism spectrum disorder: A qualitative meta-synthesis. Focus on Autism and Other Developmental Disabilities,31(1), 60–71. Scholar
  13. Emerson, E., Einfeld, S., & Stancliffe, R. J. (2010). The mental health of young children with intellectual disabilities or borderline intellectual functioning. Social Psychiatry and Psychiatric Epidemiology,45(5), 579–587. Scholar
  14. Fenning, R. M., Baker, J. K., Baker, B. L., & Crnic, K. A. (2007). Parenting children with borderline intellectual functioning: A unique risk population. American Journal on Mental Retardation,112(2), 107.;2.CrossRefPubMedGoogle Scholar
  15. Fernell, E., & Ek, U. (2010). Borderline intellectual functioning in children and adolescents—Insufficiently recognized difficulties. Acta Paediatrica,99(5), 748–753. Scholar
  16. Happé, F., & Frith, U. (2006). The weak coherence account: Detail-focused cognitive style in autism spectrum disorders. Journal of Autism and Developmental Disorders,36(1), 5–25. Scholar
  17. Huws, J. C., & Jones, R. S. P. (2008). Diagnosis, disclosure, and having autism: An interpretative phenomenological analysis of the perceptions of young people with autism. Journal of Intellectual and Developmental Disability,33(2), 99–107. Scholar
  18. Johnson, S. A., Filliter, J. H., & Murphy, R. R. (2009). Discrepancies between self- and parent-perceptions of autistic traits and empathy in high functioning children and adolescents on the autism spectrum. Journal of Autism and Developmental Disorders,39(12), 1706–1714. Scholar
  19. Kerns, C. M., Roux, A. M., Connell, J. E., & Shattuck, P. T. (2016). Adapting cognitive behavioral techniques to address anxiety and depression in cognitively able emerging adults on the autism spectrum. Cognitive and Behavioral Practice,23, 329–340. Scholar
  20. Lester, J. N. (2012). A discourse analysis of parents’ talk around their children’s autism labels. Disability Studies Quarterly. Scholar
  21. Locke, K., & Mitchell, G. E. (2016). Self-perceptions, parent-perceptions, and meta-perceptions of the interpersonal efficacy of adolescents with autism spectrum disorder. Research in Autism Spectrum Disorders,31, 19–29. Scholar
  22. Mazefsky, C. A., Kao, J., & Oswald, D. P. (2011). Preliminary evidence suggesting caution in the use of psychiatric self-report measures with adolescents with high-functioning autism spectrum disorders. Research in Autism Spectrum Disorders,5(1), 164–174. Scholar
  23. Myers, B. J., Mackintosh, V. H., & Goin-Kochel, R. P. (2009). “My greatest joy and my greatest heart ache:” Parents’ own words on how having a child in the autism spectrum has affected their lives and their families’ lives. Research in Autism Spectrum Disorders,3(3), 670–684. Scholar
  24. Ruiz Calzada, L., Pistrang, N., & Mandy, W. P. L. (2012). High-functioning autism and Asperger’s disorder: Utility and meaning for families. Journal of Autism and Developmental Disorders,42(2), 230–243. Scholar
  25. Sattler, J., & Dumont, R. (2004). Assessment of children: WISC IV and WPPSI III supplement. San Diego, CA: Jerome M. Sattler.Google Scholar
  26. Schriber, R. A., Robins, R. W., & Solomon, M. (2014). Personality and self-insight in individuals with autism spectrum disorder. Journal of Personality and Social Psychology,106, 112–130. Scholar
  27. Sebastian, C., Burnett, S., & Blakemore, S.-J. (2008). Development of the self-concept during adolescence. Trends in Cognitive Sciences,12(11), 441–446. Scholar
  28. Shyu, Y. L., Tsai, J., & Tsai, W. (2010). Explaining and selecting treatments for autism: Parental explanatory models in Taiwan. Journal of Autism and Developmental Disorders,40(11), 1323–1331. Scholar
  29. Simonoff, E., Pickles, A., Charman, T., Chandler, S., Loucas, T., & Baird, G. (2008). Psychiatric disorders in children with autism spectrum disorders: Prevalence, comorbidity, and associated factors in a population-derived sample. Journal of the American Academy of Child and Adolescent Psychiatry,47(8), 921–929. Scholar
  30. Snyder, C. R., Hoza, B., Pelham, W. E., Rapoff, J., Ware, L., Danovsky, M., et al. (1997). The development and validation of the children’s hope scale. Journal of Pediatric Psychology,22, 399–421. Scholar
  31. Steinberg, L., & Monahan, K. C. (2007). Age differences in resistance to peer influence. Developmental Psychology,43(6), 1531. Scholar
  32. Storch, E. A., Lewin, A. B., Collier, A. B., et al. (2014). A randomized controlled trial of cognitive–behavioral therapy versus treatment as usual for adolescents with autism spectrum disorders and comorbid anxiety. Depression and Anxiety,32, 174–181. Scholar
  33. Valle, M. F., Huebner, E. S., & Suldo, S. M. (2004). Further evaluation of the children’s hope scale. Journal of Psychoeducational Assessment,22(4), 320–337. Scholar
  34. Vasa, R., Carroll, L. M., Nozzolillo, A. A., Mahajan, R., Mazurek, M. O., Bennett, A. E., et al. (2014). A systematic review of treatments for anxiety in youth with autism spectrum disorders. Journal of Autism and Developmental Disorders,44, 3215–3229. Scholar
  35. Wechsler, D. (2003). Wechsler intelligence scale for children-fourth edition (WISC-IV). San Antonio, TX: The Psychological Corporation.Google Scholar
  36. Williams, E. I., Gleeson, K., & Jones, B. E. (2017). How pupils on the autism spectrum make sense of themselves in the context of their experiences in a mainstream school setting: A qualitative metasynthesis. Autism. Scholar

Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  1. 1.University of Colorado School of Medicine/Children’s Hospital ColoradoAuroraUSA
  2. 2.University of CaliforniaLos AngelesUSA
  3. 3.University of CaliforniaRiversideUSA

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