Top

Journal of Autism and Developmental Disorders

Gepubliceerd in:

25-11-2019 | Original Paper

“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

Auteurs: Lauren D. Berkovits, Christine T. Moody, Jan Blacher

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 3/2020

Abstract

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.

vorige artikel Observational and Reported Measures of Language and Pragmatics in Young People with Autism: A Comparison of Respondent Data and Gender Profiles

volgende artikel Preschool Peer Social Intervention (PPSI) to Enhance Social Play, Interaction, and Conversation: Study Outcomes

Alleen toegankelijk voor geautoriseerde gebruikers

Lester (2012): sample included 11 mothers and 3 fathers; child gender not disclosed.

Myers et al. (2009): sample included 493 parents, 92.2% mothers; child gender 80% male.

Shyu et al. (2010): sample included 12 mothers and 1 father; all 13 children were male.

Ruiz Calzada et al. (2012): sample included families of 10 children; 9 male and 1 female.

DePape and Lindsay (2016): study samples included in meta-analysis consisted of 318 individuals, 77% male.

Daley and Weisner (2003): sample consisted of 23 adolescents; gender not formally disclosed.

Huws and Jones (2008): sample consisted of 9 youth; 6 male and 3 female.

Calder et al. (2013): sample included 12 children; 8 male and 4 female.

Williams et al. (2017): study samples included in meta-analysis consisted of 167 youth; 84.7% male (among those studies that reported gender).

The Estimated Full Scale IQ scores of these participants were 62, 64, and 72.

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.

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: American Psychiatric Association.CrossRef

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. https://doi.org/10.1007/s10803-019-03954-w.CrossRefPubMed

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.

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. https://doi.org/10.1111/j.1532-7795.2010.00721.x.CrossRefPubMedPubMedCentral

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. https://doi.org/10.1177/1362361315586721.CrossRef

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. https://doi.org/10.1177/1362361312467866.CrossRefPubMed

Constantino, J. N. (2002). The social responsiveness scale. Los Angeles: Western Psychological Services.

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. https://doi.org/10.1097/00004703-200002000-00002.CrossRefPubMed

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.PubMedPubMedCentral

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. https://doi.org/10.1525/maq.2003.17.1.25.CrossRefPubMed

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. https://doi.org/10.1177/1088357615587504.CrossRef

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. https://doi.org/10.1007/s00127-009-0100-y.CrossRefPubMed

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. https://doi.org/10.1352/0895-8017(2007)112%5b107:PCWBIF%5d2.0.CO;2.CrossRefPubMed

Fernell, E., & Ek, U. (2010). Borderline intellectual functioning in children and adolescents—Insufficiently recognized difficulties. Acta Paediatrica,99(5), 748–753. https://doi.org/10.1111/j.1651-2227.2010.01707.x.CrossRefPubMed

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. https://doi.org/10.1007/s10803-005-0039-0.CrossRefPubMed

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. https://doi.org/10.1080/13668250802010394.CrossRefPubMed

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. https://doi.org/10.1007/s10803-009-0809-1.CrossRefPubMed

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. https://doi.org/10.1016/j.cbpra.2016.06.002.CrossRef

Lester, J. N. (2012). A discourse analysis of parents’ talk around their children’s autism labels. Disability Studies Quarterly. https://doi.org/10.18061/dsq.v32i4.1744.CrossRef

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. https://doi.org/10.1016/j.rasd.2016.07.006.CrossRef

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. https://doi.org/10.1016/j.rasd.2010.03.006.CrossRefPubMedPubMedCentral

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. https://doi.org/10.1016/j.rasd.2009.01.004.CrossRef

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. https://doi.org/10.1007/s10803-011-1238-5.CrossRefPubMed

Sattler, J., & Dumont, R. (2004). Assessment of children: WISC IV and WPPSI III supplement. San Diego, CA: Jerome M. Sattler.

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. https://doi.org/10.1037/a0034950.CrossRefPubMedPubMedCentral

Sebastian, C., Burnett, S., & Blakemore, S.-J. (2008). Development of the self-concept during adolescence. Trends in Cognitive Sciences,12(11), 441–446. https://doi.org/10.1016/j.tics.2008.07.008.CrossRefPubMed

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. https://doi.org/10.1007/s10803-010-0991-1.CrossRefPubMed

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. https://doi.org/10.1097/CHI.0b013e318179964f.CrossRefPubMed

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. https://doi.org/10.1093/jpepsy/22.3.399.CrossRefPubMed

Steinberg, L., & Monahan, K. C. (2007). Age differences in resistance to peer influence. Developmental Psychology,43(6), 1531. https://doi.org/10.1037/0012-1649.43.6.1531.CrossRefPubMedPubMedCentral

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. https://doi.org/10.1002/da.22332.CrossRefPubMedPubMedCentral

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. https://doi.org/10.1177/073428290402200403.CrossRef

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. https://doi.org/10.1007/s10803-014-2184-9.CrossRefPubMed

Wechsler, D. (2003). Wechsler intelligence scale for children-fourth edition (WISC-IV). San Antonio, TX: The Psychological Corporation.

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. https://doi.org/10.1177/1362361317723836.CrossRefPubMed

Titel: “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
Auteurs: Lauren D. Berkovits
Christine T. Moody
Jan Blacher
Publicatiedatum: 25-11-2019
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 3/2020
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-019-04309-1

Andere artikelen Uitgave 3/2020

Brief Report: Perceived Evidence and Use of Autism Intervention Strategies in Early Intervention Providers

Brief Report

Inclusive Preschool Practitioners’ Implementation of Naturalistic Developmental Behavioral Intervention Using Telehealth Training

Original Paper

Preschool Peer Social Intervention (PPSI) to Enhance Social Play, Interaction, and Conversation: Study Outcomes

Original Paper

Influence of a Combined Gluten-Free and Casein-Free Diet on Behavior Disorders in Children and Adolescents Diagnosed with Autism Spectrum Disorder: A 12-Month Follow-Up Clinical Trial

Original Paper

The Immersive Theater Experience for Individuals with Autism Spectrum Disorder

Brief Report

Book-Reading Engagement in Children with Autism and Language Impairment: Associations with Emergent-Literacy Skills

Original Paper