Autistic Self-Advocacy and the Neurodiversity Movement: Implications for Autism Early Intervention Research and Practice
Leadbitter, K., Buckle, K. L., Ellis, C., & Dekker, M. (2021). Autistic Self-Advocacy and the Neurodiversity Movement: Implications for Autism Early Intervention Research and Practice. Frontiers in Psychology, 12, 635690-635690. https://doi.org/10.3389/fpsyg.2021.635690
Authors
Abstract
The growth of autistic self-advocacy and the neurodiversity movement has brought about new ethical, theoretical and ideological debates within autism theory, research and practice. These debates have had genuine impact within some areas of autism research but their influence is less evident within early intervention research. In this paper, we argue that all autism intervention stakeholders need to understand and actively engage with the views of autistic people and with neurodiversity as a concept and movement. In so doing, intervention researchers and practitioners are required to move away from a normative agenda and pay diligence to environmental goodness-of-fit, autistic developmental trajectories, internal drivers and experiences, and autistic prioritized intervention targets. Autism intervention researchers must respond to these debates by reframing effectiveness, developing tools to measure autistic prioritized outcomes, and forming partnerships with autistic people. There is a pressing need for increased reflection and articulation around how intervention practices align with a neurodiversity framework and greater emphasis within intervention programmes on natural developmental processes, coping strategies, autonomy, and well-being.
Bibliography cited by this reference
Cited references are imported from external metadata sources when they are available. The list may be partial.
Bibliography inclusion overview
These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:30.
-
Helen McConachie , Jeremy R. Parr , Magdalena Glod , Jennifer Hanratty , Nuala Livingstone , Inalegwu P Oono et al. (2015). Systematic review of tools to measure outcomes for young children with autism spectrum disorder . Health Technology Assessment, 19(41), 1-506. National Institute for Health and Care Research.Crossref OpenAlex OpenCitations
-
Catherine Aldred , Jonathan Green , Catherine Adams (2004). A new social communication intervention for children with autism: pilot randomised controlled treatment study suggesting effectiveness . Journal of Child Psychology and Psychiatry, 45(8), 1420-1430. Wiley.Crossref OpenAlex OpenCitations
-
Micheal Sandbank , Kristen Bottema‐Beutel , Shannon Crowley , Margaret Cassidy , Kacie Dunham , Jacob I. Feldman et al. (2020). Project AIM: Autism intervention meta-analysis for studies of young children. Psychological Bulletin, 146(1), 1-29. American Psychological Association (APA).Crossref OpenAlex OpenCitations
-
Type: Article OpenAlex: https://openalex.org/W1567377403AutiHub · Autistic Scholars OpenAlex
-
(n.d.). Your Questions: Shaping Future Autism Research2015Type: OtherCrossref
-
Catherine J. Crompton , Martha Sharp , Harriet Axbey *Autistic author. Learn more… , Sue Fletcher‐Watson , Emma G. Flynn , Danielle Ropar (2020). Neurotype-Matching, but Not Being Autistic, Influences Self and Observer Ratings of Interpersonal Rapport . Frontiers in Psychology, 11, 586171-586171. Frontiers Media SA.
-
Joseph F Kras (2009). The “Ransom Notes” Affair: When the Neurodiversity Movement Came of Age . Disability Studies Quarterly, 30(1), 1065. The Ohio State University Libraries.Crossref OpenAlex OpenCitations
-
(n.d.). Quiet hands177182 BascomJ. Loud Hands: Autistic people, Speaking2012Type: OtherCrossref
-
Umberto Provenzani , Laura Fusar-Poli , Natascia Brondino , Stefano Damiani , Marco Vercesi , Nicholas Meyer et al. (2020). What are we targeting when we treat autism spectrum disorder? A systematic review of 406 clinical trials . Autism, 24(2), 274-284. SAGE Publications.Crossref OpenAlex OpenCitations
-
Sven Bölte , Elles de Schipper , John Elder Robison *Autistic author. Learn more… , Virginia Wong , Melissa Selb , Nidhi Singhal et al. (2014). Classification of Functioning and Impairment: The Development of ICF C ore S ets for Autism Spectrum Disorder . Autism Research, 7(1), 167-172. Wiley.
-
(n.d.). BelcherH. FordR. MoreinS. StaggS. Social Skills Predict Diagnosis of Autism in Women [Poster presentation]. British Psychological Society Division of Clinical Psychology Conference, Manchester, UKType: OtherCrossref
-
Elisabeth M. A. Späth , Karin R. Jongsma (2020). Autism, autonomy, and authenticity . Medicine, Health Care and Philosophy, 23(1), 73-80. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Damian Milton *Autistic author. Learn more… , Lyte Moon (2012). The normalisation agenda and the psycho-emotional disablement of autistic people. Autonomy, the Critical Journal of Interdisciplinary Autism Studies, 1(1), 1.Type: Article OpenAlex: https://openalex.org/W1892279485OpenAlex
-
Paul R. Benson , Dave Daley , Kristie L. Karlof , Dorothy Robison (2011). Assessing expressed emotion in mothers of children with autism . Autism, 15(1), 65-82. SAGE Publications.Crossref OpenAlex OpenCitations
-
Kristy Lorraine Dykshoorn , Damien C Cormier (2019). Autism Spectrum Disorder Research: Time for Positive Psychology . Autism-Open Access, 09(01), 235. Longdom Group.Crossref OpenAlex OpenCitations
-
Damian Milton *Autistic author. Learn more… (2012). On the ontological status of autism: the ‘double empathy problem’ . Disability & Society, 27(6), 883-887. Informa UK Limited.
-
Jonathan A. Hughes (2021). Does the heterogeneity of autism undermine the neurodiversity paradigm? Bioethics, 35(1), 47-60. Wiley.Crossref OpenAlex OpenCitations
-
Pier Jaarsma , Stellan Welin (2012). Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement . Health Care Analysis, 20(1), 20-30. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Kristen Bottema‐Beutel , Shannon Crowley , Micheal Sandbank , Tiffany G. Woynaroski (2021). Research Review: Conflicts of Interest (COIs) in autism early intervention research – a meta‐analysis of COI influences on intervention effects . Journal of Child Psychology and Psychiatry, 62(1), 5-15. Wiley.Crossref OpenAlex OpenCitations
-
Jacqui Rodgers , R. Herrema , E. Honey , Mark Freeston (2018). Towards a Treatment for Intolerance of Uncertainty for Autistic Adults: A Single Case Experimental Design Study . Journal of Autism and Developmental Disorders, 48(8), 2832-2845. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Katherine Runswick-Cole (2014). ‘Us’ and ‘them’: the limits and possibilities of a ‘politics of neurodiversity’ in neoliberal times . Disability & Society, 29(7), 1117-1129. Informa UK Limited.Crossref OpenAlex OpenCitations
-
Kristen Bottema‐Beutel , Haerin Park , So Yoon Kim (2018). Commentary on Social Skills Training Curricula for Individuals with ASD: Social Interaction, Authenticity, and Stigma . Journal of Autism and Developmental Disorders, 48(3), 953-964. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Jonathan Green , Tony Charman , Helen McConachie , Catherine Aldred , Vicky Slonims , Patricia Howlin et al. (2010). Parent-mediated communication-focused treatment in children with autism (PACT): a randomised controlled trial . The Lancet, 375(9732), 2152-2160. Elsevier BV.Crossref OpenAlex OpenCitations
-
Kate Gordon , Marianna Murin , Ozlem Baykaner , Laura Roughan , Vaan Livermore‐Hardy , David Skuse et al. (2015). A randomised controlled trial of PEGASUS, a psychoeducational programme for young people with high‐functioning autism spectrum disorder . Journal of Child Psychology and Psychiatry, 56(4), 468-476. Wiley.Crossref OpenAlex OpenCitations
-
Buckle (2013). Is reducing disability always good? Is reducing disability always good?.Type: OtherCrossref
-
Will Mandy (2019). Social camouflaging in autism: Is it time to lose the mask? Autism, 23(8), 1879-1881. SAGE Publications.Crossref OpenAlex OpenCitations
-
Dinah Murray *Autistic author. Learn more… , Mike Lesser *Autistic author. Learn more… , Wenn Lawson *Autistic author. Learn more… (2005). Attention, monotropism and the diagnostic criteria for autism . Autism, 9(2), 139-156. SAGE Publications.
-
Karen Leneh Buckle *Autistic author. Learn more… , Kathy Leadbitter , Ellen Poliakoff , Emma Gowen (2020). "No way out except from external intervention": First-hand accounts of autistic inertia . PsyArXiv [preprint]. Center for Open Science.Crossref OpenAlex OpenCitations
-
Steven K. Kapp *Autistic author. Learn more… , Robyn Steward *Autistic author. Learn more… , Laura Crane , Daisy Elliott , Chris Elphick , Elizabeth Pellicano et al. (2019). ‘People should be allowed to do what they like’: Autistic adults’ views and experiences of stimming . Autism, 23(7), 1782-1792. SAGE Publications.
-
Priscilla Burnham Riosa , Victoria Chan , Andrea Maughan , Victoria Stables , Carly Albaum , Jonathan A. Weiss (2017). Remediating Deficits or Increasing Strengths in Autism Spectrum Disorder Research: a Content Analysis . Advances in Neurodevelopmental Disorders, 1(3), 113-121. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Andrew Pickles , Ann Le Couteur , Kathy Leadbitter , Erica Salomone , Rachel Cole-Fletcher , Hannah Tobin et al. (2016). Parent-mediated social communication therapy for young children with autism (PACT): long-term follow-up of a randomised controlled trial . The Lancet, 388(10059), 2501-2509. Elsevier BV.Crossref OpenAlex OpenCitations
-
Simon M. Bury , Rachel Jellett , Jennifer R. Spoor , Darren Hedley (2023). “It Defines Who I Am” or “It’s Something I Have”: What Language Do [Autistic] Australian Adults [on the Autism Spectrum] Prefer? Journal of Autism and Developmental Disorders, 53(2), 677-687. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Francesca Happé , Uta Frith (2020). Annual Research Review: Looking back to look forward – changes in the concept of autism and implications for future research . Journal of Child Psychology and Psychiatry, 61(3), 218-232. Wiley.Crossref OpenAlex OpenCitations
-
Damian Milton *Autistic author. Learn more… (2014). Autistic expertise: A critical reflection on the production of knowledge in autism studies . Autism, 18(7), 794-802. SAGE Publications.
-
Sarah Cassidy , Ashley Robertson , Ellen Townsend , Rory C. O’Connor , Jacqui Rodgers (2020). Advancing Our Understanding of Self-harm, Suicidal Thoughts and Behaviours in Autism . Journal of Autism and Developmental Disorders, 50(10), 3445-3449. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Robert Chapman *Autistic author. Learn more… (2021). Neurodiversity and the Social Ecology of Mental Functions . Perspectives on Psychological Science, 16(6), 1360-1372. SAGE Publications.
-
Gary Yu Hin Lam , Emily Holden , Megan Fitzpatrick , Linda Raffaele Mendez , Karen Berkman (2020). “Different but connected”: Participatory action research using Photovoice to explore well-being in autistic young adults . Autism, 24(5), 1246-1259. SAGE Publications.Crossref OpenAlex OpenCitations
-
Elizabeth Pellicano , Adam Dinsmore , Tony Charman (2014). What should autism research focus upon? Community views and priorities from the United Kingdom . Autism, 18(7), 756-770. SAGE Publications.
-
Laura Crane , Fern Adams , Georgia Harper , Jack Welch , Elizabeth Pellicano (2019). ‘Something needs to change’: Mental health experiences of young autistic adults in England . Autism, 23(2), 477-493. SAGE Publications.Crossref OpenAlex OpenCitations
-
Lorcan Kenny , Caroline Hattersley , Bonnie Molins , Carole Buckley , Carol Povey , Elizabeth Pellicano (2016). Which terms should be used to describe autism? Perspectives from the UK autism community . Autism, 20(4), 442-462. SAGE Publications.Crossref OpenAlex OpenCitations
-
Raffaele Rodogno , Katrine Krause-Jensen , Richard E Ashcroft (2016). ‘Autism and the good life’: a new approach to the study of well-being . Journal of Medical Ethics, 42(6), 401-408. BMJ.Crossref OpenAlex OpenCitations
-
(n.d.). DekkerM. Pick a side: the dilemma of being an autistic parent [Presentation]. Autscape, NorthamptonType: OtherCrossref
-
Rebecca Wood (2021). Autism, intense interests and support in school: from wasted efforts to shared understandings . Educational Review, 73(1), 34-54. Informa UK Limited.Crossref OpenAlex OpenCitations
-
Dekker (2020). From exclusion to acceptance: independent living on the Autistic Spectrum, in Autistic Community and the Neurodiversity Movement: Stories From the Frontline .Type: OtherCrossref
-
Laurent Mottron (2017). Should we change targets and methods of early intervention in autism, in favor of a strengths-based education? European Child & Adolescent Psychiatry, 26(7), 815-825. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Jacquiline den Houting *Autistic author. Learn more… (2019). Neurodiversity: An insider’s perspective . Autism, 23(2), 271-273. SAGE Publications.
-
Rachel Grove , Rosa A. Hoekstra , Marlies Wierda , Sander Begeer (2018). Special interests and subjective wellbeing in autistic adults . Autism Research, 11(5), 766-775. Wiley.Crossref OpenAlex OpenCitations
-
Patrick Kirkham (2017). ‘The line between intervention and abuse’ – autism and applied behaviour analysis . History of the Human Sciences, 30(2), 107-126. SAGE Publications.Crossref OpenAlex OpenCitations
-
(n.d.). Fletcher-WatsonS. Is Early Autism Intervention Compatible With Neurodiversity [Blog post]2018Type: OtherCrossref
-
Lorna French , Eilis M.M. Kennedy (2018). Annual Research Review: Early intervention for infants and young children with, or at‐risk of, autism spectrum disorder: a systematic review . Journal of Child Psychology and Psychiatry, 59(4), 444-456. Wiley.Crossref OpenAlex OpenCitations
-
Sue Fletcher‐Watson , Jonathan Adams *Autistic author. Learn more… , Kabie Brook *Autistic author. Learn more… , Tony Charman , Laura Crane , James Cusack *Autistic author. Learn more… et al. (2019). Making the future together: Shaping autism research through meaningful participation . Autism, 23(4), 943-953. SAGE Publications.
-
Kathy Leadbitter , Kathy Leadbitter , Catherine Aldred , Helen McConachie , Ann Le Couteur , Tony Charman et al. (2018). The Autism Family Experience Questionnaire (AFEQ): An Ecologically-Valid, Parent-Nominated Measure of Family Experience, Quality of Life and Prioritised Outcomes for Early Intervention . Journal of Autism and Developmental Disorders, 48(4), 1052-1062. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Meng-Chuan Lai , Péter Szatmári (2019). Resilience in autism: Research and practice prospects . Autism, 23(3), 539-541. SAGE Publications.Crossref OpenAlex OpenCitations
-
Ashley Robertson , Andrew C. Stanfield , Jane Watt , Fiona Barry , Matthew Day , Magnus Cormack et al. (2018). The experience and impact of anxiety in autistic adults: A thematic analysis . Research in Autism Spectrum Disorders, 46, 8-18. Elsevier BV.Crossref OpenAlex OpenCitations
-
PACT-G Group , Jonathan Green , Catherine Aldred , Tony Charman , Ann Le Couteur , Richard A. Emsley et al. (2018). Paediatric Autism Communication Therapy-Generalised (PACT-G) against treatment as usual for reducing symptom severity in young children with autism spectrum disorder: study protocol for a randomised controlled trial . Trials, 19(1), 514-514. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
(n.d.). HughesJ. M. Increasing neurodiversity in disability and social justice advocacy groups [White paper]. Autistic Self Advocacy Network2016Type: OtherCrossref
-
Valentina Iemmi , Martín Knapp , Ian Ragan (2017). The autism dividend. Reaping the rewards of better investment. Unpublished.Crossref OpenAlex
-
Barbara Skinner , Gerard Leavey , Despina Rothi (2021). Managerialism and teacher professional identity: impact on well-being among teachers in the UK . Educational Review, 73(1), 1-16. Informa UK Limited.OpenAlex
-
(n.d.). Priority Setting Partnerships: Autism2016Type: OtherCrossref
-
Elizabeth Randell , Rachel McNamara , Sue Delport , Monica Busse , Richard P. Hastings , David Gillespie et al. (2019). Sensory integration therapy versus usual care for sensory processing difficulties in autism spectrum disorder in children: study protocol for a pragmatic randomised controlled trial . Trials, 20(1), 1. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Steven K. Kapp *Autistic author. Learn more… (2020). Introduction . In Autistic community and the neurodiversity movement (pp. 1-19). Springer Singapore.Crossref OpenAlex OpenCitations
-
Kaufman (1976). Son-rise . Son-rise.Type: OtherCrossref
-
Shain Neumeier , Ly Xīnzhèn M. Zhǎngsūn Brown *Autistic author. Learn more… (2020). Torture in the Name of Treatment: The Mission to Stop the Shocks in the Age of Deinstitutionalization . In Autistic Community and the Neurodiversity Movement: Stories From the Frontline (pp. 195-210). Springer Singapore.
-
Rebecca McKenzie , Rudi Dallos , Jacqui Stedmon , Helen Hancocks , Patricia Jane Vickery , Paul Ewings et al. (2019). SAFE, a new therapeutic intervention for families of children with autism: study protocol for a feasibility randomised controlled trial . BMJ Open, 9(5), e025006. BMJ.Crossref OpenAlex OpenCitations
-
Owen McGill , Anna Robinson (2021). “Recalling hidden harms”: autistic experiences of childhood applied behavioural analysis (ABA) . Advances in Autism, 7(4), 269-282. Emerald.Crossref OpenAlex OpenCitations
-
Annemarie Lodder , Chris Papadopoulos , Gurch Randhawa (2020). SOLACE: A Psychosocial Stigma Protection Intervention to Improve the Mental Health of Parents of Autistic Children—A Feasibility Randomised Controlled Trial . Journal of Autism and Developmental Disorders, 50(12), 4477-4491. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Gina Agarwal , Magali Girard , Ricardo Angeles , Melissa Pirrie , Marie-Thérèse Lussier , Francine Marzanek et al. (2019). Design and rationale for a pragmatic cluster randomized trial of the Cardiovascular Health Awareness Program (CHAP) for social housing residents in Ontario and Quebec, Canada . Trials, 20(1), 760-760. Springer Science and Business Media LLC.OpenAlex
-
Andrew Pickles , James B. McCauley , Lauren A. Pepa , Marisela Huerta , Catherine Lord (2020). The adult outcome of children referred for autism: typology and prediction from childhood . Journal of Child Psychology and Psychiatry, 61(7), 760-767. Wiley.Crossref OpenAlex OpenCitations
-
Maurice (1998). Let me Hear Your Voice: A Family's Triumph Over Autism .Type: OtherCrossref
-
McDonnell (2014). Going with the flow: reconsidering ‘repetitive behaviour' through the concept of ‘flow states' . Good Autism Practice: Autism, Happiness and Wellbeing, 38.Type: OtherCrossref
-
Jeremy R. Parr , Samuel Brice , Patrick Welsh , Barry Ingham , Ann Le Couteur , Gemma Evans et al. (2020). Treating anxiety in autistic adults: study protocol for the Personalised Anxiety Treatment–Autism (PAT-A©) pilot randomised controlled feasibility trial . Trials, 21(1), 265. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
(n.d.). The normalisation agenda and the psycho- emotional disablement of autistic people. Autonomy Crit. J. Interdisc. Autism Stud MiltonD. MoonL. 2012Type: OtherCrossref
-
Michael Oliver , HUGH M. BOCHEL (1990). The Politics of Disablement . Macmillan Education UK.Crossref OpenCitations
-
(n.d.). An independent guide to quality care for autistic people2019Type: OtherCrossref
-
Karen Leneh Buckle *Autistic author. Learn more… , Kathy Leadbitter , Ellen Poliakoff , Emma Gowen (2021). “No Way Out Except From External Intervention”: First-Hand Accounts of Autistic Inertia . Frontiers in Psychology, 12, 631596-631596. Frontiers Media SA.AutiHub · Autistic Scholars OpenAlex
-
(n.d.). ParkC. C. 1972Type: OtherCrossref
-
(1993). Let me hear your voice: a family's triumph over autism . Choice Reviews Online, 31(04), 31-2375-31-2375. American Library Association.OpenAlex
-
(n.d.). SinclairJ. Don't mourn for us. Autism Network International Newsletter: Our Voice1993Type: OtherCrossref
-
Singer (1998). Odd people in: The birth of community amongst people on the Autistic Spectrum: A personal exploration of a new social movement based on neurological diversity . Odd people in: The birth of community amongst people on the Autistic Spectrum: A personal exploration of a new social movement based on neurological diversity.Type: OtherCrossref
-
(n.d.). StevensonN. Autism Doesn't Have to be Viewed as a Disability or Disorder [blog post]2015Type: OtherCrossref
-
(n.d.). Autism: Postnote number 6122020Type: OtherCrossref