Les points de vue des membres de la communauté sur les interventions concernant l'autisme : Effets de la proximité avec les personnes autistes ayant des déficiences intellectuelles et les personnes autistes non verbales

Ajouté le 06/09/2024

Type de contenu

Article de revue du type Recherche scientifique ( ; anglais)

Lynnette Hersh, Patrick Dwyer*, Steven Kapp*, Sergey Shevchuk-Hill, Ava Gurba*, Elizabeth Kilgallon*, Ally Pax Arcari Mair, David Chang, Susan Rivera, Kristen Gillespie-Lynch , Community member views on autism intervention: Effects of closeness to autistic people with intellectual disabilities and nonspeaking autistic people publié dans la revue "Autism in adulthood", Preprint, 19 pages , doi:10.1089/aut.2023.0202

*Quatre co-auteur·rices sont autistes. [En savoir plus sur cette mention]

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Contexte: La controverse entourant le mouvement de la neurodiversité (NDM), les modèles sociaux et médicaux du handicap, les objectifs d'intervention pour l'autisme et les attributions causales du handicap contribuent à des divisions au sein des communautés autistes et de l'autisme. La présente étude examine les points de vue des membres des communautés autistes et de l'autisme, qu'ils soient autistes ou non, sur ces sujets. Nous avons exploré si ces points de vue sont influencés par le fait d'entretenir des relations proches avec des personnes autistes ayant des déficiences intellectuelles (DI) et des personnes autistes non verbales (NSA).
Méthodes : Un total de 504 membres des communautés autistes et de l'autisme (278 autistes, 226 non-autistes) ont répondu à un sondage en ligne sur les modèles théoriques et les objectifs d'intervention. Les participants ont indiqué s'ils avaient une ou plusieurs relations proches avec des personnes NSA, des personnes autistes avec DI, ni l'un ni l'autre, ou les deux.
Résultats : Globalement, il y avait un consensus considérable concernant les objectifs d'intervention souhaités : les objectifs de normalisation étaient généralement rejetés, tandis que les participants soutenaient généralement les objectifs de bien-être, de réforme sociétale, d'environnement de soutien et de compétences adaptatives. Bien que les participants autistes aient signalé moins de soutien pour les objectifs de normalisation et de compétences adaptatives que les participants non autistes, ils ont exprimé un peu plus d'enthousiasme pour la réforme sociétale et les environnements de soutien que les non-autistes. Les personnes autistes soutenaient davantage le NDM et moins le modèle médical que les non-autistes. Ceux qui avaient des relations proches avec des personnes autistes avec DI ont attribué des notes plus élevées aux objectifs de compétences adaptatives. En moyenne, les participants non proches des personnes autistes avec DI percevaient les défis de ceux sans DI comme étant légèrement plus dus à des facteurs environnementaux/sociaux que les défis de ceux avec DI; il n'y avait pas de telle différence statistique chez ceux qui étaient proches des personnes autistes avec DI.
Conclusion : Davantage de recherches examinant les points de vue de la communauté, incluant davantage de personnes autistes avec DI et des personnes NSA elles-mêmes, sont nécessaires. Cependant, les résultats de cette étude suggèrent que les communautés autistes et de l'autisme plus larges considèrent que les objectifs d'intervention cohérents avec le NDM sont appropriés pour toutes les personnes autistes, y compris les personnes NSA et celles avec DI. Étant donné que les interventions en autisme ont souvent poursuivi des objectifs de normalisation impopulaires, cela suggère des directions pour une réforme.

Background: Controversy regarding the neurodiversity movement (NDM), the social and medical models of disability, autism intervention goals, and causal attributions of disability contributes to divides in the autistic and autism communities. The present study investigates the views of autistic and non-autistic autistic and autism community members on these topics. We explored whether these views are shaped by having close relationships to autistic people with intellectual disabilities (ID) and nonspeaking autistic (NSA) people.
Methods: A total of 504 autistic and autism community members (278 autistic, 226 non-autistic) completed an online survey about theoretical models and intervention goals. Participants reported whether they had one or more close relationships with NSA people, autistic people with ID, neither, or both.
Results: Overall, there was considerable consensus regarding desired intervention goals: normalization goals were generally opposed, while participants generally supported well-being, societal reform, supportive environment, and adaptive skill goals. While autistic participants reported less support for normalization and adaptive skills goals than non-autistic participants, they expressed somewhat more enthusiasm for societal reform and supportive environments than non-autistic people. Autistic people supported the NDM more and the medical model less than non-autistic people. Those close to autistic people with ID gave higher ratings to adaptive skill goals. On average, participants not close to autistic people with ID saw the challenges of those without ID as being slightly more due to environmental/social factors than the challenges of those with ID; there was no such statistical difference among those close to autistic people with ID.
Conclusion: Further research investigating community views, with the inclusion of more autistic people with ID and NSA people themselves, is needed, but the results of this study suggest that the broader autistic and autism communities see NDM-consistent intervention goals as appropriate for all autistic people, including NSA people and those with ID. As autism interventions have often pursued unpopular normalization goals, this suggests directions for reform.

Pour information:

(1) les références en bleu sont des ressources référencées sur notre site;

(2) les auteur·rices repris dans cette bibliographie dont le nom est en couleur ont publié d'autres ressources référencées sur le site. Cliquer sur le nom permet de voir la listes des ressources publiées et partagées sur le site;

(3) les auteur·rices dont le nom est suivi d'une astérisque ont publiquement divulgué être autistes. [En savoir plus sur cette mention]

  • H. Appleton, J. Roberts, K. Simpson (2019). "How is Anxiety Identified and Diagnosed in Individuals with Autism Spectrum Disorder and Intellectual Disability? A Scoping Review." J Ment Health Res Intellect Disabil, 12(3-4), 152-175. doi:10.1080/19315864.2019.1679299

  • T. Armstrong (2010). "Neurodiversity: Discovering the Extraordinary Gifts of Autism, ADHD, Dyslexia, and Other Brain Differences". ReadHowYouWant.com.

  • American Psychiatric Association (2013). "Diagnostic and Statistical Manual of Mental Disorders". Fifth Edition. American Psychiatric Association. doi:10.1176/appi.books.9780890425596

  • National Council on Severe Autism (2018). "Innovative Research — NCSA — NCSA." National Council on Severe Autism. (Source)

  • D.L. Baker (2011). "The Politics of Neurodiversity: Why Public Policy Matters". Lynne Rienner Publishers Boulder, CO.

  • E.P. Ballou (2022). "What the Neurodiversity Movement Does—And Doesn’t—Offer." Thinking Person’s Guide to Autism. (Source)

  • S. Baron-Cohen (2019). "The concept of neurodiversity is dividing the autism community." Sci Am Mind, 30(4), 30-32.

  • K. Beauchamp‐Pryor (2011). "Impairment, cure and identity: ‘where do I fit in?’" Disabil Soc, 26(1), 5-17. doi:10.1080/09687599.2011.529662

  • Y. Benjamini, Y. Hochberg (1995). "Controlling the False Discovery Rate: A Practical and Powerful Approach to Multiple Testing." J R Stat Soc Ser B Methodol, 57(1), 289-300. doi:10.1111/j.2517-6161.1995.tb02031.x

  • A. Blakeley‐Smith, A.T. Meyer, R.E. Boles, J. Reaven (2021). "Group Cognitive Behavioural Treatment for Anxiety in Autistic Adolescents with Intellectual Disability: A Pilot and Feasibility Study." J Appl Res Intellect Disabil, 34(3), 777-788. doi:10.1111/jar.12854

  • K. Bottema-Beutel, T.S. Mullins, M.N. Harvey, J.R. Gustafson, E.W. Carter (2016). "Avoiding the ‘brick wall of awkward’: Perspectives of youth with autism spectrum disorder on social-focused intervention practices." Autism, 20(2), 196-206. doi:10.1177/1362361315574888

  • I. Brown, R.I. Brown (2009). "Choice as an Aspect of Quality of Life for People With Intellectual Disabilities." J Policy Pract Intellect Disabil, 6(1), 11-18. doi:10.1111/j.1741-1130.2008.00198.x

  • S. Bunbury (2019). "Unconscious bias and the medical model: How the social model may hold the key to transformative thinking about disability discrimination." Int J Discrim Law, 19(1), 26-47. doi:10.1177/1358229118820742

  • S. Bölte, W.B. Lawson*, P.B. Marschik, S. Girdler (2021). "Reconciling the seemingly irreconcilable: The WHO’s ICF system integrates biological and psychosocial environmental determinants of autism and ADHD: The International Classification of Functioning (ICF) allows to model opposed biomedical and neurodiverse views of autism and ADHD within one framework." BioEssays, 43(9), 2000254. doi:10.1002/bies.202000254

  • E. Cage, Z. Troxell-Whitman (2019). "Understanding the Reasons, Contexts and Costs of Camouflaging for Autistic Adults." J Autism Dev Disord, 49(5), 1899-1911. doi:10.1007/s10803-018-03878-x

  • D. Celiberti (2015). "Interview with Catherine Maurice, PhD, Parent, Author - ASAT Online." (Source)

  • B. Chamak (2008). "Autism and social movements: French parents’ associations and international autistic individuals’ organisations." Sociol Health Illn, 30(1), 76-96. doi:10.1111/j.1467-9566.2007.01053.x

  • R. Chapman* (2020). "Defining Neurodiversity for Research and Practice." In: H. Bertilsdoter Rosqvist, N. Chown, N. Stenning, eds. Neurodiversity Studies: A New Critical Paradigm, 1st ed. Routledge. (Source)

  • R. Chapman*, V. Bovell (2022). "Neurodiversity, Advocacy, Anti-Therapy." In: J.L. Matson, P. Sturmey, eds. Handbook of Autism and Pervasive Developmental Disorder. Autism and Child Psychopathology Series. Springer International Publishing, 1519-1536. doi:10.1007/978-3-030-88538-0_67

  • K.T. Chazin, J.R. Ledford, J.M. Wilson-Moses, A. Rajaraman, A.P. Juárez (2024). "Centering Autistic Perspectives: Social Acceptability of Goals, Learning Contexts, and Procedures for Young Autistic Children." J Autism Dev Disord. doi:10.1007/s10803-024-06242-4

  • Y. Cheng, B. Tekola, A. Balasubramanian, L. Crane, K. Leadbitter (2023). "Neurodiversity and community-led rights-based movements: Barriers and opportunities for global research partnerships." Autism, 27(3), 573-577.

  • D. Chinn, B. Balota (2023). "A systematic review of photovoice research methods with people with intellectual disabilities." Research Intellect Disabil, 36(4), 725-738. doi:10.1111/jar.13106

  • J. Clarke, G. Van Amerom (2008). "Asperger’s Syndrome: Differences Between Parents’ Understanding and Those Diagnosed." Soc Work Health Care, 46(3), 85-106. doi:10.1300/J010v46n03_05

  • V. Cluley (2018). "From ‘Learning disability to intellectual disability’—Perceptions of the increasing use of the term ‘intellectual disability’ in learning disability policy, research and practice." British Journal of Learning Disabilities, 46(1), 24-32.

  • Therapist Neurodiversity Collective (2024). "Applied Behavior Analysis (ABA)." (Source)

  • Interagency Autism Coordinating Committee (IACC) (2021). "2017-2018 IACC Autism Spectrum Disorder Research Portfolio Analysis Report." (Source)

  • M. Costandi (2019). "What the Neurodiversity Movement Does—And Doesn’t—Offer — THINKING PERSON’S GUIDE TO AUTISM." Aeon. (Source)

  • L. Crow (2010). "Including all of our lives: Renewing the social model of disability." In: Equality, Participation and Inclusion 1. Routledge, 136-152.

  • G. Dawson, J.M. Sun, J. Baker, et al. (2020). "A Phase II Randomized Clinical Trial of the Safety and Efficacy of Intravenous Umbilical Cord Blood Infusion for Treatment of Children with Autism Spectrum Disorder." J Pediatr, 222, 164-173.e5. doi:10.1016/j.jpeds.2020.03.011

  • G. Dawson (2008). "Early behavioral intervention, brain plasticity, and the prevention of autism spectrum disorder." Dev Psychopathol, 20(3), 775-803. doi:10.1017/S0954579408000370

  • K.S. Dickson, T. Lind, A. Jobin, M. Kinnear, H. Lok, L. Brookman-Frazee (2021). "A Systematic Review of Mental Health Interventions for ASD: Characterizing Interventions, Intervention Adaptations, and Implementation Outcomes." Adm Policy Ment Health Ment Health Serv Res, 48(5), 857-883. doi:10.1007/s10488-021-01133-7

  • Foundation for People with Learning Disabilities (2016). "Social model of disability." Foundation for People with Learning Disabilities. (Source)

  • M. Doherty*, S. Neilson, J. O’Sullivan, et al. (2022). "Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study." BMJ Open, 12(2), e056904. doi:10.1136/bmjopen-2021-056904

  • S. Drazner (2022). "#KickedOut - When Severe Autism Kicks You Out of State for 20 Years — NCSA." National Council on Severe Autism. (Source)

  • C. Dudley, D.B. Nicholas, J. Zwicker (2015). "What do we know about improving employment outcomes for individuals with Autism Spectrum Disorder?" SPP Res Pap, 8(32).

  • L.M. Emerson, E. Pellicano, R. Monk, M. Lim, J. Heaton, L. McLay (2023). "A portfolio analysis of autism research funding in Aotearoa New Zealand 2007–2021." Autism, doi:10.1177/13623613231155954

  • S. Epskamp, A.O.J. Cramer, L.J. Waldorp, V.D. Schmittmann, D. Borsboom (2012). "qgraph: Network Visualizations of Relationships in Psychometric Data." J Stat Softw, 48(4). doi:10.18637/jss.v048.i04

  • J.M. Eriksson, L.M. 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), 49. doi:10.1186/2040-2392-4-49

  • Escher (2022). "Autism Almost Killed My Daughter, Again — NCSA." National Council on Severe Autism. (Source)

  • Non-Speaking Autistic Author Ido Kedar Gives Tips to Non-Speakers & Their Families (2022). (Source)

  • A.B. Felt, D. Mitcham, M. Hathcock, R. Swienton, C. Harris (2022). "Discrimination and Bias in State Triage Protocols Toward Populations With Intellectual Disabilities During the COVID-19 Pandemic." Disaster Med Public Health Prep, 16(5), 1772-1774. doi:10.1017/dmp.2021.81

  • E. Fernell, P. Gustafsson, C. Gillberg (2021). "Bumetanide for autism: Open‐label trial in six children." Acta Paediatr, 110(5), 1548-1553. doi:10.1111/apa.15723

  • S. Flynn, L. Vereenooghe, R.P. Hastings, et al. (2017). "Measurement tools for mental health problems and mental well-being in people with severe or profound intellectual disabilities: A systematic review." Clin Psychol Rev, 57, 32-44. doi:10.1016/j.cpr.2017.08.006

  • A. Forbes (2024). "Autism and Access to Healthcare." Mitchell Hamline Law J Public Policy Pract, 45(1), 2.

  • T.W. Frazier, G. Dawson, D. Murray*, A. Shih, J.S. Sachs, A. Geiger (2018). "Brief Report: A Survey of Autism Research Priorities Across a Diverse Community of Stakeholders." J Autism Dev Disord, 48(11), 3965-3971. doi:10.1007/s10803-018-3642-6

  • U. Frith (2008). "Autism: A Very Short Introduction". Oxford University Press, USA.

  • V. Gibbs, J. Hudson, E. Pellicano (2023). "The Extent and Nature of Autistic People’s Violence Experiences During Adulthood: A Cross-sectional Study of Victimisation." J Autism Dev Disord, 53(9), 3509-3524. doi:10.1007/s10803-022-05647-3

  • L. Gilmour, P.M. Schalomon, V. Smith (2012). "Sexuality in a community based sample of adults with autism spectrum disorder." Res Autism Spectr Disord, 6(1), 313-318. doi:10.1016/j.rasd.2011.06.003

  • H.F. Golino, S. Epskamp (2017). "Exploratory graph analysis: A new approach for estimating the number of dimensions in psychological research." In: M. Voracek, ed. PLOS ONE, 12(6), e0174035. doi:10.1371/journal.pone.0174035

  • H. Golino, A.P. Christensen (2022). "EGAnet package - RDocumentation." (Source)

  • C. Greenburg, S.D.R. Rosa (2020). "Two Winding Parent Paths to Neurodiversity Advocacy." In: S. Kapp, ed. Autistic Community and the Neurodiversity Movement. Springer Singapore, 155-166. doi:10.1007/978-981-13-8437-0_12

  • J.L. Heffron, N.A. Spassiani, A.M. Angell, J. Hammel (2018). "Using Photovoice as a participatory method to identify and strategize community participation with people with intellectual and developmental disabilities." Scandinavian Journal of Occupational Therapy, 25(5), 382-395. doi:10.1080/11038128.2018.1502350

  • J. Hong, L.S. DaWalt, J.L. Taylor, A. Haider, M. Mailick (2023). "Autism through midlife: trajectories of symptoms, behavioral functioning, and health." J Neurodev Disord, 15(1), 36. doi:10.1186/s11689-023-09505-w

  • Thinking Person’s Guide to Autism. "Neurodiversity FAQ." Thinking Person’s Guide to Autism. (Source)

  • J.A. Hughes (2021). "Does the heterogeneity of autism undermine the neurodiversity paradigm?" Bioethics, 35(1), 47-60. doi:10.1111/bioe.12780

  • N. Humphrey, J. Hebron (2015). "Bullying of children and adolescents with autism spectrum conditions: a ‘state of the field’ review." Int J Incl Educ, 19(8), 845-862. doi:10.1080/13603116.2014.981602

  • P. Jaarsma, S. Welin (2012). "Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement." Health Care Anal, 20(1), 20-30. doi:10.1007/s10728-011-0169-9

  • A. John, Y. Friedmann, M. DelPozo-Banos, A. Frizzati, T. Ford, A. Thapar (2022). "Association of school absence and exclusion with recorded neurodevelopmental disorders, mental disorders, or self-harm: a nationwide, retrospective, electronic cohort study of children and young people in Wales, UK." Lancet Psychiatry, 9(1), 23-34. doi:10.1016/S2215-0366(21)00367-9

  • R.S.P. Jones, T.O. Meldal (2001). "Social Relationships and Asperger’s Syndrome: A Qualitative Analysis of First-Hand Accounts." J Learn Disabil, 5(1), 35-41. doi:10.1177/146900470100500104

  • S.L. Jones*, M. Johnson*, B. Alty, M. Adamou (2021). "The Effectiveness of RAADS-R as a Screening Tool for Adult ASD Populations." In: S. Salloum-Asfar, ed. Autism Res Treat, 2021, 1-6. doi:10.1155/2021/9974791

  • S. Kapp* (2020). Autistic Community and the Neurodiversity Movement: Stories from the Frontline. Springer Nature.

  • S. Kapp* (2018). "Social support, well-being, and quality of life among individuals on the autism spectrum." Pediatrics, 141(Supplement_4), S362-S368.

  • S. Kapp* (2023). "Profound Concerns about “Profound Autism”: Dangers of Severity Scales and Functioning Labels for Support Needs." Educ Sci, 13(2), 106. doi:10.3390/educsci13020106

  • S. Kapp* (2013). "Interactions between theoretical models and practical community members: The basis for an integrative, collaborative approach to disabilities." In: Autistic Self Advocacy Network, Daniel Jordan Fiddle Foundation, eds. Empowering Leadership: A Systems Change Guide for Autistic College Students and Those with Other Disabilities. The Autism Press, 104-113.

  • S. Kapp*, A. Ne’eman (2012). "ASD in DSM-5: What the research shows and recommendations for change." Policy Brief Autistic Self Advocacy Netw.

  • A. Kappes, A.H. Harvey, T. Lohrenz, P.R. Montague, T. Sharot (2020). "Confirmation bias in the utilization of others’ opinion strength." Nat Neurosci, 23(1), 130-137. doi:10.1038/s41593-019-0549-2

  • N. Keates, F. Martin, K.E. Waldock (2024). "Autistic People’s Perspectives on Functioning Labels and Associated Reasons, and Community Connectedness." J Autism Dev Disord. doi:10.1007/s10803-024-06316-3

  • I. Kedar (2012). "Ido in Autismland: Climbing out of Autism’s Silent Prison".

  • C.M. Kerns, B. Winder-Patel, A.M. Iosif, et al. (2021). "Clinically Significant Anxiety in Children with Autism Spectrum Disorder and Varied Intellectual Functioning." J Clin Child Adolesc Psychol, 50(6), 780-795. doi:10.1080/15374416.2019.1703712

  • A.N. Kildahl, S.B. Helverschou, T.L. Bakken, H.W. Oddli (2020). "If we do not look for it, we do not see it: Clinicians’ experiences and understanding of identifying post‐traumatic stress disorder in adults with autism and intellectual disability." J Appl Res Intellect Disabil, 33(5), 1119-1132. doi:10.1111/jar.12734

  • A.V. Kirby, V.A. Dickie, G.T. Baranek (2015). "Sensory experiences of children with autism spectrum disorder: In their own words." Autism, 19(3), 316-326. doi:10.1177/1362361314520756

  • L.K. Koegel, K.M. Bryan, P.L. Su, M. Vaidya, S. Camarata (2020). "Definitions of nonverbal and minimally verbal in research for autism: A systematic review of the literature." J Autism Dev Disord, 50, 2957-2972.

  • T.M. Krahn, A. Fenton (2012). "Funding Priorities: Autism and the Need for a More Balanced Research Agenda in Canada." Public Health Ethics, 5(3), 296-310. doi:10.1093/phe/phs027

  • C. La Valle, D. Plesa-Skwerer, H. Tager-Flusberg (2020). "Comparing the pragmatic speech profiles of minimally verbal and verbally fluent individuals with autism spectrum disorder." J Autism Dev Disord, 50, 3699-3713.

  • Lamb (2019). "Autism and the limits of the neurodiversity movement." The Autism Cafe. (Source)

  • C. Lambert (2023). "The TikTok Effect: How the Social Media App Helps Spread Autism Misinformation." National Council on Severe Autism. (Source)

  • D. Lane (2022). "#KickedOut: When Severe Autism Makes You Too Disabled for Disability Programs — NCSA." National Council on Severe Autism. (Source)

  • Lieu (2021). "I Was Part of the “Good ABA.”" NeuroClastic. (Source)

  • S. Lipinski*, E.S. Blanke, U. Suenkel, I. Dziobek (2019). "Outpatient Psychotherapy for Adults with High-Functioning Autism Spectrum Condition: Utilization, Treatment Satisfaction, and Preferred Modifications." J Autism Dev Disord, 49(3), 1154-1168. doi:10.1007/s10803-018-3797-1

  • A. Llewellyn, K. Hogan (2000). "The Use and Abuse of Models of Disability." Disabil Soc, 15(1), 157-165. doi:10.1080/09687590025829

  • C. Di Lorito, A. Bosco, L. Birt, A. Hassiotis (2018). "Co‐research with adults with intellectual disability: A systematic review." J Appl Res Intellect Disabil, 31(5), 669-686. doi:10.1111/jar.12435

  • A. Lutz (2020). "Dear NYT Madeleine: My Child with Autism Is Not Perfect — NCSA." National Council on Severe Autism. (Source)

  • A. Lutz (2024). "I’m tired of disability activists pretending my son doesn’t exist." Washington Post. (Source)

  • B.B. Maddox, S. Crabbe, R.S. Beidas, et al. (2020). "‘I wouldn’t know where to start’: Perspectives from clinicians, agency leaders, and autistic adults on improving community mental health services for autistic adults." Autism, 24(4), 919-930.

  • A.P.A. Mair, E. Nimbley, D. McConachie, K. Goodall, K. Gillespie-Smith (2023). "Understanding the neurodiversity of grief: a systematic literature review of experiences of grief and loss in the context of neurodevelopmental disorders." (Source)

  • J. Mantzalas, A.L. Richdale, C. Dissanayake (2022). "A conceptual model of risk and protective factors for autistic burnout." Autism Res, 15(6), 976-987. doi:10.1002/aur.2722

  • S.K. Mathur, E. Renz, J. Tarbox (2024). "Affirming Neurodiversity within Applied Behavior Analysis." Behav Anal Pract, doi:10.1007/s40617-024-00907-3

  • O. McGill, A. Robinson (2021). "Recalling hidden harms: autistic experiences of childhood applied behavioural analysis (ABA)." Adv Autism, 7(4), 269-282. doi:10.1108/AIA-04-2020-0025

  • J.E. Mingins, J. Tarver, J. Waite, C. Jones, A.D. Surtees (2021). "Anxiety and intellectual functioning in autistic children: A systematic review and meta-analysis." Autism, 25(1), 18-32. doi:10.1177/1362361320953253

  • M.R. Nario-Redmond, J.G. Noel, E. Fern (2013). "Redefining Disability, Re-imagining the Self: Disability Identification Predicts Self-esteem and Strategic Responses to Stigma." Self Identity, 12(5), 468-488. doi:10.1080/15298868.2012.681118

  • D.B. Nicholas, D. Hedley, J.K. Randolph, D.M. Raymaker*, S.M. Robertson, J. Vincent (2019). "An Expert Discussion on Employment in Autism." Autism Adulthood, 1(3), 162-169. doi:10.1089/aut.2019.29003.djn

  • C. Nicolaidis, D. Raymaker*, K.E. McDonald, et al. (2020). "Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability: Lessons Learned and Recommendations." Autism Adulthood, 2(1), 61-76. doi:10.1089/aut.2019.0074

  • C. Nicolaidis, D. Raymaker*, M. Katz, et al. (2015). "Community-based participatory research to adapt health measures for use by people with developmental disabilities." Prog Community Health Partnersh Res Educ Action, 9(2), 157-170.

  • C. Nicolaidis, D. Raymaker*, K. McDonald, et al. (2011). "Collaboration Strategies in Nontraditional Community-Based Participatory Research Partnerships: Lessons From an Academic–Community Partnership With Autistic Self-Advocates." Prog Community Health Partnersh Res Educ Action, 5(2), 143-150. doi:10.1353/cpr.2011.0022

  • V. Nordin, M. Palmgren, A. Lindbladh, S. Bölte, U. Jonsson (2023). "School absenteeism in autistic children and adolescents: A scoping review." Autism, doi:10.1177/13623613231217409

  • M. Orsini, M. Smith (2010). "Social movements, knowledge and public policy: the case of autism activism in Canada and the US." Crit Policy Stud, 4(1), 38-57. doi:10.1080/19460171003714989

  • F. Ortega (2009). "The Cerebral Subject and the Challenge of Neurodiversity." BioSocieties, 4(4), 425-445. doi:10.1017/S1745855209990287

  • T. Overmars‐Marx, F. Thomése, X. Moonen (2018). "Photovoice in research involving people with intellectual disabilities: A guided photovoice approach as an alternative." Research Intellect Disabil, 31(1). doi:10.1111/jar.12329

  • PBS (2020). "People First: In the Shadow of Fairview." Oregon Experience. (Source)

  • A. Pearson*, K. Rose*, J. Rees (2023). "‘I felt like I deserved it because I was autistic’: Understanding the impact of interpersonal victimisation in the lives of autistic people." Autism, 27(2), 500-511. doi:10.1177/13623613221104546

  • E. Pellicano, M. Stears (2011). "Bridging autism, science and society: moving toward an ethically informed approach to autism research." Autism Res, 4(4), 271-282. doi:10.1002/aur.201

  • L. Pellicano (2018). "Autism advocacy and research misses the mark if autistic people are left out." The Conversation. (Source)

  • C. Punshon, P. Skirrow, G. Murphy (2009). "The ‘not guilty verdict’: Psychological reactions to a diagnosis of Asperger syndrome in adulthood." Autism, 13(3), 265-283. doi:10.1177/1362361309103795

  • D. Ramey, O. Healy, E. McEnaney (2023). "Defining and Measuring Indices of Happiness and Unhappiness in Children Diagnosed with Autism Spectrum Disorder." Behav Anal Pract, 16(1), 194-209. doi:10.1007/s40617-022-00710-y

  • E. Rassin, A. Eerland, I. Kuijpers (2010). "Let’s find the evidence: an analogue study of confirmation bias in criminal investigations." J Investig Psychol Offender Profiling, 7(3), 231-246. doi:10.1002/jip.126

  • C.T. Richards, L.M. Crawley, D. Magnus (2009). "Use of neurodevelopmental delay in pediatric solid organ transplant listing decisions: Inconsistencies in standards across major pediatric transplant centers." Pediatr Transplant, 13(7), 843-850. doi:10.1111/j.1399-3046.2008.01072.x

  • S.M. Robertson (2010). "Neurodiversity, quality of life, and autistic adults: Shifting research and professional focuses onto real-life challenges." Disabil Stud Q, 30(1).

  • S.D.R. Rosa (2021). "A ‘Profound Autism’ Category Is Segregation—Not Progress." THINKING PERSON’S GUIDE TO AUTISM. (Source)

  • G. Russell (2020). "Critiques of the Neurodiversity Movement." In: S. Kapp, ed. Autistic Community and the Neurodiversity Movement. Springer Singapore, 287-303. doi:10.1007/978-981-13-8437-0_21

  • J. Ryan*, H.M. Brown*, A. Borden, et al. (2024). "Being able to be myself: Understanding autonomy and autonomy-support from the perspectives of autistic adults with intellectual disabilities." Autism. doi:10.1177/13623613241254432

  • E. Rødgaard, K. Jensen, K.W. Miskowiak, L. Mottron (2022). "Representativeness of autistic samples in studies recruiting through social media." Autism Res, 15(8), 1447-1456. doi:10.1002/aur.2777

  • E.T. Savarese, R.J. Savarese (2010). "The Superior Half of Speaking: An Introduction." Disabil Stud Q, 30(1).

  • R.K. Schuck, D.M. Tagavi, K.M.P. Baiden, et al. (2022). "Neurodiversity and Autism Intervention: Reconciling Perspectives Through a Naturalistic Developmental Behavioral Intervention Framework." J Autism Dev Disord, 52(10), 4625-4645. doi:10.1007/s10803-021-05316-x

  • A.E. Schwartz, J.M. Kramer, E.S. Cohn, K.E. McDonald (2020). "‘That Felt Like Real Engagement’: Fostering and Maintaining Inclusive Research Collaborations With Individuals With Intellectual Disability." Qual Health Res, 30(2), 236-249. doi:10.1177/1049732319869620

  • M. Scott, B. Milbourn, M. Falkmer, et al. (2019). "Factors impacting employment for people with autism spectrum disorder: A scoping review." Autism, 23(4), 869-901. doi:10.1177/1362361318787789

  • A. Sequenzia (2025). "My Thoughts on ABA." AWN Network. (Source)

  • S.C. Shaw*, L. Carravallah, M. Johnson*, et al. (2023). "Barriers to healthcare and a ‘triple empathy problem’ may lead to adverse outcomes for autistic adults: A qualitative study." Autism, doi:10.1177/13623613231205629

  • E. Shyman (2016). "The Reinforcement of Ableism: Normality, the Medical Model of Disability, and Humanism in Applied Behavior Analysis and ASD." Intellect Dev Disabil, 54(5), 366-376. doi:10.1352/1934-9556-54.5.366

  • J. Sinclair (1992). "What does being different mean." Our Voice Newsl Autism Netw Int, (1).

  • M.E. Snell, R. Luckasson, W.S. Borthwick-Duffy, et al. (2009). "Characteristics and Needs of People With Intellectual Disability Who Have Higher IQs." Intellect Dev Disabil, 47(3), 220-233. doi:10.1352/1934-9556-47.3.220

  • M. Sparrow (2024). "Can ABA Therapy Affirm Neurodiversity?" THINKING PERSON’S GUIDE TO AUTISM. (Source)

  • H. Srinivasan (2022). "Troubling Ableism in Neurodiversity by Hari Srinivasan." Mad Lab at Cal. (Source)

  • H. Srinivasan (2023). "A Dual Approach for Autism." Newsweek. (Source)

  • R. Tesfaye, V. Courchesne, P. Mirenda, et al. (2023). "Autism voices: Perspectives of the needs, challenges, and hopes for the future of autistic youth." Autism, 27(4), 1142-1156. doi:10.1177/13623613221132108

  • M. Tincani, J. Travers, A. Boutot (2009). "Race, culture, and autism spectrum disorder: Understanding the role of diversity in successful educational interventions." Res Pract Pers Sev Disabil, 34(3-4), 81-90.

  • V. Totsika, R.P. Hastings, Y. Dutton, et al. (2020). "Types and correlates of school non-attendance in students with autism spectrum disorders." Autism, 24(7), 1639-1649. doi:10.1177/1362361320916967

  • P.O. Towle, P.A. Patrick, T. Ridgard, S. Pham, J. Marrus (2020). "Is Earlier Better? The Relationship between Age When Starting Early Intervention and Outcomes for Children with Autism Spectrum Disorder: A Selective Review." Autism Res Treat, 2020, 1-17. doi:10.1155/2020/7605876

  • S. Tromans, C. Adams (2018). "Brief Report: Autism Spectrum Disorder: A Comprehensive Survey of Randomized Controlled Trials." J Autism Dev Disord, 48(9), 3228-3232. doi:10.1007/s10803-018-3569-y

  • H. Waddington, H. Minnell, L. Patrick*, et al. (2023). "Community perspectives on the appropriateness and importance of support goals for young autistic children." Autism, doi:10.1177/13623613231168920

  • E. Weir, C. Allison, S. Baron-Cohen (2022). "Autistic adults have poorer quality healthcare and worse health based on self-report data." Mol Autism, 13(1), 23. doi:10.1186/s13229-022-00501-w

  • C.E. Whelpley, C.P. May (2023). "Seeing is Disliking: Evidence of Bias Against Individuals with Autism Spectrum Disorder in Traditional Job Interviews." J Autism Dev Disord, 53(4), 1363-1374. doi:10.1007/s10803-022-05432-2

  • B. Winder-Patel, M.E. Tudor, C.M. Kerns, et al. (2022). "Often undiagnosed but treatable: Case vignettes and clinical considerations for assessing anxiety disorders in youth with autism spectrum disorder and intellectual disability." Evidence-Based Practice in Child and Adolescent Mental Health, 7(1), 24-40. doi:10.1080/23794925.2021.1923090

  • N. Wolff, S. Stroth, I. Kamp-Becker, S. Roepke, V. Roessner (2022). "Autism Spectrum Disorder and IQ – A Complex Interplay." Front Psychiatry, 13, 856084. doi:10.3389/fpsyt.2022.856084


 
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