'Autism is me': an investigation of how autistic individuals make sense of autism and stigma

Added on 17/11/2024

Type de contenu

Journal article of the type Scientific research ( ; english)

Monique Botha * , Bridget Dibb , David Frost
'Autism is me': an investigation of how autistic individuals make sense of autism and stigma published in the journal "Disability & society" n°37, vol.3, 27 pages , doi: 10.1080/09687599.2020.1822782

*One co-author has publicly identified as autistic. [Learn more about this mention]

Summary/Presentation

There are many different perspectives for understanding autism. These perspectives may each convey different levels of stigma for autistic individuals. This qualitative study aimed to understand how autistic individuals make sense of their own autism and experience the stigma attached to autism. The study used critical grounded theory tools. Participants (N = 20) discussed autism as central to their identity, and integral to who they are. While participants thought of autism as value neutral, they expressed how society confers negative meanings onto autism, and thus, them. The findings also indicate that different understandings of autism confer different levels of stigma. Participants expressed constant exposure to stigma and managed this stigma in different ways. Such methods included reframing to more positive understandings of autism, the reclamation of language, and using concealment and disclosure strategically. The implications of these findings are discussed further in the article.

For your information:

(1) References in blue are resources listed on our site.

(2) Authors listed in this bibliography whose names are in color have published other resources referenced on the site. Clicking on the name allows you to see the list of resources they have published and shared on the site.

(3) Authors whose names are followed by an asterisk have publicly disclosed being autistic.

  • R. Samil Alkhaldi, E. Sheppard, P. Mitchell (2019). "Is There a Link Between Autistic People Being Perceived Unfavorably and Having a Mind That Is Difficult to Read?". J Autism Dev Disord, 49(10). doi:10.1007/s10803-019-04101-1

  • N. Bagatell (2007). "Orchestrating voices: autism, identity and the power of discourse". Disability & Society, 22(4). doi:10.1080/09687590701337967

  • S. Baglieri (2014). "Disability Studies and the Inclusive Classroom".

  • D. Bai, B. Hon Kei Yip, G. Windham, A. Sourander, R. Francis, R. Yoffe, E. Glasson, B. Mahjani, A. Suominen, H. Leonard, M. Gissler, J. Buxbaum, K. Wong, D. Schendel, A. Kodesh, M. Breshnahan, S. Levine, E. Parner, S. Hansen, C. Hultman, A. Reichenberg, S. Sandin (2019). "Association of Genetic and Environmental Factors With Autism in a 5-Country Cohort". JAMA Psychiatry, 76(10). doi:10.1001/jamapsychiatry.2019.1411

  • D. Bainbridge (2008). "Beyond the Zonules of Zinn".

  • K. Barad (2007). "Meeting the Universe Halfway".

  • D. R. Barnbaum (2008). "The Ethics of Autism: Among Them, but Not of Them." Indiana University Press. (Source)

  • N. Bauminger, M. Solomon, A. Aviezer, K. Heung, J. Brown, S. Rogers (2008). "Friendship in High-functioning Children with Autism Spectrum Disorder: Mixed and Non-mixed Dyads". J Autism Dev Disord, 38(7). doi:10.1007/s10803-007-0501-2

  • A. Benítez-Burraco, W. Lattanzi, E. Murphy (2016). "Language Impairments in ASD Resulting from a Failed Domestication of the Human Brain". Front. Neurosci., 10. doi:10.3389/fnins.2016.00373

  • R. Bhaskar (1997). "A Realist Theory of Science." Verso, London.

  • R. Brontsema (2004). "A Queer Revolution: Reconceptualizing the Debate over Linguistic Reclamation." Colorado Research in Linguistics, 17(1):1–17. doi:10.25810/dky3-zq57

  • A. Brown (2017, January). "Identity-First Language: The Significance of Semantics: Person-First Language: Why It Matters." Nothing About Us Without Us. (Source)

  • R. Butler, J. Gillis (2011). "The Impact of Labels and Behaviors on the Stigmatization of Adults with Asperger's Disorder". J Autism Dev Disord, 41(6). doi:10.1007/s10803-010-1093-9

  • E. Cage, J. Di Monaco, V. Newell (2018). "Experiences of Autism Acceptance and Mental Health in Autistic Adults". J Autism Dev Disord, 48(2). doi:10.1007/s10803-017-3342-7

  • R. Chapman* (2019). "Autism as a Form of Life: Wittgenstein and the Psychological Coherence of Autism". Metaphilosophy, 50(4). doi:10.1111/meta.12366

  • K. Charmaz (2008). "Constructionism and the Grounded Theory Method." In Handbook of Constructionist Research, J. A. Holstein & J. F. Gumbrium (Eds.), 397–412. New York: The Guilford Press.

  • K. Charmaz (2006). "Constructing Grounded Theory: A Practical Guide through Qualitative Analysis." Sage.

  • J. Corbin, A. L. Strauss (2008). "Basics of Qualitative Research." Sage.

  • J. Corbin, A. Strauss (2008). "Techniques and Procedures for Developing Grounded Theory." (3rd ed.) SAGE Publications, Inc. doi:10.4135/9781452230153

  • T. Cowen (2009). "Autism as Academic Paradigm." The Chronicles of Higher Education. (Source)

  • C. J. Crompton, S. Fletcher-Watson, D. Ropar (2019). "‘I Never Realised Everybody Felt as Happy as I Do When I Am around Autistic People.’ A Thematic Analysis of Autistic Adults’ Relationships with Autistic and Neurotypical Friends and Family." Autism Open Science Framework. doi:10.31219/osf.io/46b87

  • M. DeFilippis, K. D. Wagner (2016). "Treatment of Autism Spectrum Disorder in Children and Adolescents." Psychopharmacology Bulletin, 46(2):18–41.

  • U. Frith (2004). "Emanuel Miller lecture: Confusions and controversies about Asperger syndrome". Child Psychology Psychiatry, 45(4). doi:10.1111/j.1469-7610.2004.00262.x

  • U. Frith, F. Happé (1999). "Theory of Mind and Self‐Consciousness: What Is It Like to Be Autistic?". Mind & Language, 14(1). doi:10.1111/1468-0017.00100

  • A. Galinsky, C. Wang, J. Whitson, E. Anicich, K. Hugenberg, G. Bodenhausen (2013). "The Reappropriation of Stigmatizing Labels". Psychol Sci, 24(10). doi:10.1177/0956797613482943

  • E. Goffman (1968). "Stigma: Notes on the Management of Spoiled Identity." Penguin, Harmondsworth.

  • T. Grandin, M. Scariano (1986). "Emergence: Labeled Autistic (Warner Books ed.)." Warner Books.

  • I. Hacking (2006). "Making Up People." (Source)

  • G. Hadley (2019). "Critical Grounded Theory." In The SAGE Handbook of Current Developments in Grounded Theory, A. Bryant & K. Charmaz (Eds.), 564–592. SAGE Publications Ltd. doi:10.4135/9781526485656.n30

  • J. Harrison, L. MacGibbon, M. Morton (2001). "Regimes of Trustworthiness in Qualitative Research: The Rigors of Reciprocity". Qualitative Inquiry, 7(3). doi:10.1177/107780040100700305

  • E. Hoddy (2019). "Critical realism in empirical research: employing techniques from grounded theory methodology". International Journal of Social Research Methodology, 22(1). doi:10.1080/13645579.2018.1503400

  • A. Holton, L. Farrell, J. Fudge (2014). "A Threatening Space?: Stigmatization and the Framing of Autism in the News". Communication Studies, 65(2). doi:10.1080/10510974.2013.855642

  • J. Huws, R. Jones (2011). "Missing voices: representations of autism in British newspapers, 1999–2008". Brit J Learn Disabil, 39(2). doi:10.1111/j.1468-3156.2010.00624.x

  • P. Jaarsma, S. Welin (2012). "Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement". Health Care Anal, 20(1). doi:10.1007/s10728-011-0169-9

  • S. Kempster, K. Parry (2011). "Grounded theory and leadership research: A critical realist perspective". The Leadership Quarterly, 22(1). doi:10.1016/j.leaqua.2010.12.010

  • S. M. Kolb (2012). "Grounded Theory and the Constant Comparative Method: Valid Research Strategies for Educators." Journal of Emerging Trends in Educational Research and Policy Studies, 3(1):83–86.

  • T. Krahn, A. Fenton (2012). "The Extreme Male Brain Theory of Autism and the Potential Adverse Effects for Boys and Girls with Autism". Bioethical Inquiry, 9(1). doi:10.1007/s11673-011-9350-y

  • J. Kras (2016). "The 'Ransom Notes' Affair: When the Neurodiversity Movement Came of Age". DSQ, 30(1). doi:10.18061/dsq.v30i1.1065

  • M. Lattanner, L. Smart Richman (2017). "Effect of Stigma and Concealment on Avoidant‐Oriented Friendship Goals". Journal of Social Issues, 73(2). doi:10.1111/josi.12222

  • T. Lavelle, M. Weinstein, J. Newhouse, K. Munir, K. Kuhlthau, L. Prosser (2014). "Economic Burden of Childhood Autism Spectrum Disorders". Pediatrics, 133(3). doi:10.1542/peds.2013-0763

  • B. Link, J. Phelan (1999). "Labeling and Stigma". Handbooks of Sociology and Social Research. doi:10.1007/0-387-36223-1_23

  • O. I. Lovaas, B. Schaeffer, J. Q. Simmons (1965). "Building Social Behavior in Autistic Children by Use of Electric Shock." Journal of Experimental Research in Personality, 1(2):99–109.

  • S. Luterman (2019). "What It’s Like to Be Autistic at an Autism Research Conference." (Source)

  • N. Matthews, A. Ly, W. Goldberg (2015). "College Students' Perceptions of Peers with Autism Spectrum Disorder". J Autism Dev Disord, 45(1). doi:10.1007/s10803-014-2195-6

  • K. Mikami, S. Inomata, N. Hayakawa, Y. Ohnishi, Y. Enseki, A. Ohya, Y. Haruki, Y. Kishi, Y. Shinohara, A. Ichimura, H. Matsumoto (2009). "Frequency and clinical features of pervasive developmental disorder in adolescent suicide attempts". General Hospital Psychiatry, 31(2). doi:10.1016/j.genhosppsych.2008.12.003

  • C. Nash, A. Hawkins, J. Kawchuk, S. Shea (2012). "What's in a name? Attitudes surrounding the use of the term 'mental retardation'". Paediatrics & Child Health, 17(2). doi:10.1093/pch/17.2.71

  • J. Ohan, S. Ellefson, P. Corrigan (2015). "Brief Report: The Impact of Changing from DSM-IV 'Asperger's' to DSM-5 'Autistic Spectrum Disorder' Diagnostic Labels on Stigma and Treatment Attitudes". J Autism Dev Disord, 45(10). doi:10.1007/s10803-015-2485-7

  • C. Oliver (2012). "Critical Realist Grounded Theory: A New Approach for Social Work Research". British Journal of Social Work, 42(2). doi:10.1093/bjsw/bcr064

  • M. Ortlipp (2008). "Keeping and Using Reflective Journals in the Qualitative Research Process." The Qualitative Report, 13(4):695.

  • C. Perry, M. Thurston, K. Green (2004). "Involvement and Detachment in Researching Sexuality: Reflections on the Process of Semistructured Interviewing". Qual Health Res, 14(1). doi:10.1177/1049732303255853

  • S. Pinker (2002). "The Blank Slate: The Modern Denial of Human Nature." Viking.

  • R. Ridley (2018). "Some Difficulties behind the Concept of the ‘Extreme Male Brain’ in Autism Research." A Theoretical Review, 57. doi:10.1016/j.rasd.2018.09.007

  • S. Silberman (2015). "Neurotribes." Avery Publishing, New York.

  • J. Singer (2017). "Neurodiversity: The Birth of an Idea."

  • J. Smart (2006). "Challenges to the Biomedical Model of Disability." Advances in Medical Psychotherapy & Psychodiagnosis, 12:1–4.

  • H. Tajfel, J. Turner (1979). "An Integrative Theory of Intergroup Conflict." In The Social Psychology of Intergroup Relations, W. G. Austin & S. Worchel (Eds.), Brooks/Cole Pub. Co.

  • D. Tantam (2009). "Can the World Afford Autistic Spectrum Disorder? Nonverbal Communication, Asperger Syndrome and the Interbrain." Jessica Kingsley Publishers, London.

  • T. Teo (2010). "What is Epistemological Violence in the Empirical Social Sciences?". Social and Personality Psychology Compass, 4(5). doi:10.1111/j.1751-9004.2010.00265.x

  • M. Tomasello, M. Carpenter, J. Call, T. Behne, H. Moll (2005). "Understanding and sharing intentions: The origins of cultural cognition". Behav Brain Sci, 28(5). doi:10.1017/s0140525x05000129

  • C. Treweek, C. Wood, J. Martin, M. Freeth (2019). "Autistic people's perspectives on stereotypes: An interpretative phenomenological analysis". Autism, 23(3). doi:10.1177/1362361318778286

  • P. Van Wijngaarden-Cremers, E. van Eeten, W. Groen, P. Van Deurzen, I. Oosterling, R. Jan Van der Gaag (2014). "Gender and Age Differences in the Core Triad of Impairments in Autism Spectrum Disorders: A Systematic Review and Meta-analysis". J Autism Dev Disord, 44(3). doi:10.1007/s10803-013-1913-9

  • L. J. Walker (Ed.) (2012). "Loud Hands: Autistic People, Speaking." The Autistic Press.

  • C. Wang, J. Whitson, E. Anicich, L. Kray, A. Galinsky (2017). "Challenge Your Stigma". Curr Dir Psychol Sci, 26(1). doi:10.1177/0963721416676578

  • J. Weiss, M. Fardella (2018). "Victimization and Perpetration Experiences of Adults With Autism". Front. Psychiatry, 9. doi:10.3389/fpsyt.2018.00203

  • J. Paul Wilson, K. Hugenberg, N. Rule (2017). "Racial bias in judgments of physical size and formidability: From size to threat.". Journal of Personality and Social Psychology, 113(1). doi:10.1037/pspi0000092

  • C. Yuksel, F. Bingol, F. Oflaz (2014). "'Stigma: the cul‐de‐sac of the double bind' the perspective of Turkiye; a phenomenological study". Psychiatric Ment Health Nurs, 21(8). doi:10.1111/jpm.12100


 
Summarize/Comment on/Translate this reference?