Whose expertise is it? Evidence for autistic adults as critical autism experts

Added on 24/10/2024

Type de contenu

Journal article of the type Theoretical development ( ; english)

Whose expertise is it? Evidence for autistic adults as critical autism experts published in the journal "Frontiers in psychology" n°8, 14 pages , doi: 10.3389/fpsyg.2017.00438

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

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Summary/Presentation

Autistic and non-autistic adults’ agreement with scientific knowledge about autism, how they define autism, and their endorsement of stigmatizing conceptions of autism has not previously been examined. Using an online survey, we assessed autism knowledge and stigma among 636 adults with varied relationships to autism, including autistic people and nuclear family members. Autistic participants exhibited more scientifically based knowledge than others. They were more likely to describe autism experientially or as a neutral difference, and more often opposed the medical model. Autistic participants and family members reported lower stigma. Greater endorsement of the importance of normalizing autistic people was associated with heightened stigma. Findings suggest that autistic adults should be considered autism experts and involved as partners in autism research.


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


  • A. Psychiatric Association (2013). "Diagnostic and Statistical Manual of Mental Disorders".

  • M. Bakare, P. Ebigbo, A. Agomoh, J. Eaton, G. Onyeama, K. Okonkwo, J. Onwukwe, M. Igwe, A. Orovwigho, C. Aguocha (2009). "Knowledge about childhood autism and opinion among healthcare workers on availability of facilities and law caring for the needs and rights of children with childhood autism and other developmental disorders in Nigeria". BMC Pediatr, 9(1). doi:10.1186/1471-2431-9-12

  • J. Bascom* (2012). "Loud Hands: Autistic People, Speaking". Washington, DC: The Autistic Press.

  • C. Berryessa (2014). "Judicial Perceptions of Media Portrayals of Offenders with High Functioning Autistic Spectrum Disorders". Int. J. Criminol. Sociol., 3. doi:10.6000/1929-4409.2014.03.04

  • E. S. Bogardus (1933). "A social distance scale". Sociol. Soc. Res., 17.

  • M. Brosnan, E. Mills (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(4). doi:10.1177/1362361315586721

  • T. Brugha, S. McManus, J. Bankart, F. Scott, S. Purdon, J. Smith, P. Bebbington, R. Jenkins, H. Meltzer (2011). "Epidemiology of Autism Spectrum Disorders in Adults in the Community in England". Arch Gen Psychiatry, 68(5). doi:10.1001/archgenpsychiatry.2011.38

  • T. Brugha, S. McManus, J. Smith, F. Scott, H. Meltzer, S. Purdon, T. Berney, D. Tantam, J. Robinson, J. Radley, J. Bankart (2012). "Validating two survey methods for identifying cases of autism spectrum disorder among adults in the community". Psychol. Med., 42(3). doi:10.1017/s0033291711001292

  • 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

  • J. Campbell, B. Barger (2014). "Peers' Knowledge About and Attitudes Towards Students with Autism Spectrum Disorders". Comprehensive Guide to Autism. doi:10.1007/978-1-4614-4788-7_7

  • J. Campbell, J. Morton, K. Roulston, B. Barger (2011). "A Descriptive Analysis of Middle School Students' Conceptions of Autism". J Dev Phys Disabil, 23(5). doi:10.1007/s10882-011-9234-4

  • B. Chamak, B. Bonniau, E. Jaunay, D. Cohen (2008). "What Can We Learn about Autism from Autistic Persons?". Psychother Psychosom, 77(5). doi:10.1159/000140086

  • P. Chambres, C. Auxiette, C. Vansingle, S. Gil (2008). "Adult Attitudes Toward Behaviors of a Six-year-old Boy with Autism". J Autism Dev Disord, 38(7). doi:10.1007/s10803-007-0519-5

  • P. Corrigan, A. Watson (2007). "The Stigma of Psychiatric Disorders and the Gender, Ethnicity, and Education of the Perceiver". Community Ment Health J, 43(5). doi:10.1007/s10597-007-9084-9

  • J. Davidson (2010). "'It cuts both ways': A relational approach to access and accommodation for autism". Social Science & Medicine, 70(2). doi:10.1016/j.socscimed.2009.10.017

  • J. Davidson, M. Smith (2009). "Autistic Autobiographies and More-Than-Human Emotional Geographies". Environ Plan D, 27(5). doi:10.1068/d4308

  • H. De Jaegher (2013). "Embodiment and sense-making in autism". Front. Integr. Neurosci., 7. doi:10.3389/fnint.2013.00015

  • J. Dinishak, N. Akhtar (2013). "A Critical Examination of Mindblindness as a Metaphor for Autism". Child Dev Perspectives, 7(2). doi:10.1111/cdep.12026

  • A. Donnellan, D. Hill, M. Leary (2013). "Rethinking autism: implications of sensory and movement differences for understanding and support". Front. Integr. Neurosci., 6. doi:10.3389/fnint.2012.00124

  • G. Engel (1977). "The Need for a New Medical Model: A Challenge for Biomedicine". Science, 196(4286). doi:10.1126/science.847460

  • J. Eriksson, L. MJ Andersen, S. Bejerot (2013). "RAADS-14 Screen: validity of a screening tool for autism spectrum disorder in an adult psychiatric population". Mol Autism, 4(1). doi:10.1186/2040-2392-4-49

  • D. Feldman, C. Crandall (2007). "Dimensions of Mental Illness Stigma: What About Mental Illness Causes Social Rejection?". Journal of Social and Clinical Psychology, 26(2). doi:10.1521/jscp.2007.26.2.137

  • S. Fletcher-Watson, F. Apicella, B. Auyeung, S. Beranova, F. Bonnet-Brilhault, R. Canal-Bedia, T. Charman, N. Chericoni, I. Conceição, K. Davies, T. Farroni, M. Gomot, E. Jones, A. Kaale, K. Kapica, R. Kawa, A. Kylliäinen, K. Larsen, J. Lefort-Besnard, J. Malvy, S. Manso de Dios, S. Markovska-Simoska, I. Millo, N. Miranda, G. Pasco, E. Pisula, M. Raleva, B. Rogé, E. Salomone, S. Schjolberg, P. Tomalski, A. Vicente, N. Yirmiya (2017). "Attitudes of the autism community to early autism research". Autism, 21(1). doi:10.1177/1362361315626577

  • G. Fujiura (2015). "Perspectives on the Publication of Qualitative Research". Intellectual and Developmental Disabilities, 53(5). doi:10.1352/1934-9556-53.5.323

  • E. Gardiner, G. Iarocci (2014). "Students with Autism Spectrum Disorder in the University Context: Peer Acceptance Predicts Intention to Volunteer". J Autism Dev Disord, 44(5). doi:10.1007/s10803-013-1950-4

  • D. Giles (2014). "'DSM-V is taking away our identity': The reaction of the online community to the proposed changes in the diagnosis of Asperger's disorder". Health (London), 18(2). doi:10.1177/1363459313488006

  • D. Gray (1993). "Perceptions of stigma: the parents of autistic children". Sociology Health & Illness, 15(1). doi:10.1111/1467-9566.ep11343802

  • G. Griffith, V. Totsika, S. Nash, R. Hastings (2012). "'I just don't fit anywhere': support experiences and future support needs of individuals with Asperger syndrome in middle adulthood". Autism, 16(5). doi:10.1177/1362361311405223

  • Z. Gross (2012). "Killing words", in "Loud Hands: Autistic People, Speaking", ed. J. Bascom. Washington, DC: The Autistic Press.

  • A. Harrison, M. Slane, L. Hoang, J. Campbell (2017). "An international review of autism knowledge assessment measures". Autism, 21(3). doi:10.1177/1362361316638786

  • J. Huws, R. SP Jones (2015). "'I'm really glad this is developmental': Autism and social comparisons – an interpretative phenomenological analysis". Autism, 19(1). doi:10.1177/1362361313512426

  • 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

  • J. Jivraj, L. Sacrey, A. Newton, D. Nicholas, L. Zwaigenbaum (2014). "Assessing the influence of researcher–partner involvement on the process and outcomes of participatory research in autism spectrum disorder and neurodevelopmental disorders: A scoping review". Autism, 18(7). doi:10.1177/1362361314539858

  • J. Jones, K. Gallus, K. Viering, L. Oseland (2015). "'Are you by chance on the spectrum?' Adolescents with autism spectrum disorder making sense of their diagnoses". Disability & Society, 30(10). doi:10.1080/09687599.2015.1108902

  • L. Jones, L. Goddard, E. Hill, L. Henry, L. Crane (2014). "Experiences of Receiving a Diagnosis of Autism Spectrum Disorder: A Survey of Adults in the United Kingdom". J Autism Dev Disord, 44(12). doi:10.1007/s10803-014-2161-3

  • R. Jones, J. Huws, G. Beck (2013). "'I'm not the only person out there': insider and outsider understandings of autism". International Journal of Developmental Disabilities, 59(2). doi:10.1179/2047387712y.0000000007

  • S. K. Kapp* (2013). "Interactions between theoretical models and practical stakeholders: the basis for an integrative, collaborative approach to disabilities", in "Empowering Leadership: A Systems Change Guide for Autistic College Students and Those with Other Disabilities", eds E. Ashkenazy, M. Latimer. Washington, DC: The Autistic Press.

  • B. M. King, P. J. Rosopa, E. W. Minium (2010). "Statistical Reasoning in The Behavioral Sciences". Hoboken, NJ: Wiley Global Education.

  • C. King, G. Murphy (2014). "A Systematic Review of People with Autism Spectrum Disorder and the Criminal Justice System". J Autism Dev Disord, 44(11). doi:10.1007/s10803-014-2046-5

  • M. Kirkovski, P. Enticott, P. Fitzgerald (2013). "A Review of the Role of Female Gender in Autism Spectrum Disorders". J Autism Dev Disord, 43(11). doi:10.1007/s10803-013-1811-1

  • H. Komeda (2015). "Similarity hypothesis: understanding of others with autism spectrum disorders by individuals with autism spectrum disorders". Front. Hum. Neurosci., 9. doi:10.3389/fnhum.2015.00124

  • M. Lai, M. Lombardo, G. Pasco, A. Ruigrok, S. Wheelwright, S. Sadek, B. Chakrabarti, I., S. Baron-Cohen (2011). "A Behavioral Comparison of Male and Female Adults with High Functioning Autism Spectrum Conditions". PLoS ONE, 6(6). doi:10.1371/journal.pone.0020835

  • K. Faye Linton, T. Krcek, L. Sensui, J. Spillers (2014). "Opinions of People Who Self-Identify With Autism and Asperger's on DSM-5 Criteria". Research on Social Work Practice, 24(1). doi:10.1177/1049731513495457

  • A. S. Lutz (2013). "Is the Neurodiversity Movement Misrepresenting Autism?". (Source)

  • W. Mak, R. Cheung (2008). "Affiliate Stigma Among Caregivers of People with Intellectual Disability or Mental Illness". Research Intellect Disabil, 21(6). doi:10.1111/j.1468-3148.2008.00426.x

  • W. W.S. Mak, Y. T.Y. Kwok (2010). "Internalization of stigma for parents of children with autism spectrum disorder in Hong Kong". Social Science & Medicine, 70(12). doi:10.1016/j.socscimed.2010.02.023

  • A. McGuire, R. Michalko (2011). "Minds Between Us: Autism, mindblindness and the uncertainty of communication". Educational Philosophy and Theory, 43(2). doi:10.1111/j.1469-5812.2009.00537.x

  • K. R. McLaren (2014). "Interrogating Normal Autism Social Skills Training at the Margins of a Social Fiction". Doctoral dissertation, Sonoma State University, Rohnert Park, CA.

  • R. Nevill, S. White (2011). "College Students' Openness Toward Autism Spectrum Disorders: Improving Peer Acceptance". J Autism Dev Disord, 41(12). doi:10.1007/s10803-011-1189-x

  • C. Frazier Norbury, A. Sparks (2012). "Difference or disorder? Cultural issues in understanding neurodevelopmental disorders.". Developmental Psychology, 49(1). doi:10.1037/a0027446

  • G. Norman (2010). "Likert scales, levels of measurement and the 'laws' of statistics". Adv in Health Sci Educ, 15(5). doi:10.1007/s10459-010-9222-y

  • R. Obeid, N. Daou, D. DeNigris, C. Shane-Simpson, P. Brooks, K. Gillespie-Lynch (2015). "A Cross-Cultural Comparison of Knowledge and Stigma Associated with Autism Spectrum Disorder Among College Students in Lebanon and the United States". J Autism Dev Disord, 45(11). doi:10.1007/s10803-015-2499-1

  • A. Orinstein, J. Suh, K. Porter, K. De Yoe, K. Tyson, E. Troyb, M. Barton, I. Eigsti, M. Stevens, D. Fein (2015). "Social Function and Communication in Optimal Outcome Children and Adolescents with an Autism History on Structured Test Measures". J Autism Dev Disord, 45(8). doi:10.1007/s10803-015-2409-6

  • R. Padawer (2014). "The kids who beat autism". N. Y. Times Mag., 31, 20.

  • E. Pellicano, M. Stears (2011). "Bridging autism, science and society: moving toward an ethically informed approach to autism research". Autism Research, 4(4). doi:10.1002/aur.201

  • J. Robledo, A. Donnellan, K. Strandt-Conroy (2012). "An exploration of sensory and movement differences from the perspective of individuals with autism". Front. Integr. Neurosci., 6. doi:10.3389/fnint.2012.00107

  • E. T. Savarese (2010). "What we have to tell you: a roundtable with self-advocates from AutCom". Disabil. Stud. Q., 30. (Source)

  • O. Shtayermman (2009). "An Exploratory Study of the Stigma Associated With a Diagnosis of Asperger's Syndrome: The Mental Health Impact on the Adolescents and Young Adults Diagnosed With a Disability With a Social Nature". Journal of Human Behavior in the Social Environment, 19(3). doi:10.1080/10911350902790720

  • A. Smith (2009). "The Empathy Imbalance Hypothesis of Autism: A Theoretical Approach to Cognitive and Emotional Empathy in Autistic Development". Psychol Rec, 59(3). doi:10.1007/bf03395675

  • W. Stone (1987). "Cross-Disciplinary Perspectives on Autism". J Pediatr Psychol, 12(4). doi:10.1093/jpepsy/12.4.615

  • L. Ann Tipton, J. Blacher (2014). "Brief Report: Autism Awareness: Views from a Campus Community". J Autism Dev Disord, 44(2). doi:10.1007/s10803-013-1893-9

  • N. Walker* (2012). "Throw away the master’s tools: liberating ourselves from the pathology paradigm", in "Loud Hands: Autistic People, Speaking", ed. J. Bascom. Washington, DC: The Autistic Press.

  • M. Waltz (2010). "Autism = death: The social and medical impact of a catastrophic medical model of autistic spectrum disorders". Popular Narrative Media, 1(1). doi:10.3828/pnm.1.1.4

  • D. White, A. Hillier, A. Frye, E. Makrez (2019). "College Students' Knowledge and Attitudes Towards Students on the Autism Spectrum". J Autism Dev Disord, 49(7). doi:10.1007/s10803-016-2818-1

  • C. Wigley (2013). "Dispelling Three Myths about Likert Scales in Communication Trait Research". Communication Research Reports, 30(4). doi:10.1080/08824096.2013.836937

  • C. Wright, S. Wright, M. Diener, J. Eaton (2014). "Autism spectrum disorder and the applied collaborative approach: a review of community based participatory research and participatory action research". J Autism, 1(1). doi:10.7243/2054-992x-1-1

  • M. Yergeau (2010). "Circle wars: reshaping the typical autism essay". Disabil. Stud. Q., 30. (Source)

  • M. Yergeau (2016). "Clinically Significant Disturbance: On Theorists Who Theorize Theory of Mind". DSQ, 33(4). doi:10.18061/dsq.v33i4.3876

  • M. Yergeau (2016). "Occupying Autism: Rhetoric, Involuntarity, and the Meaning of Autistic Lives". Occupying Disability: Critical Approaches to Community, Justice, and Decolonizing Disability. doi:10.1007/978-94-017-9984-3_6

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