‘It's Really Who They Are and What They Want’: Staff Perspectives on Supporting Autonomy for Autistic Adults With Intellectual Disabilities
Ryan, J. G., Brown, H. M., Borden, A., Devlin, C., Kedmy, A., Lee, A., Nicholas, D., & Thompson-Hodgetts, S. (2025). ‘It's Really Who They Are and What They Want’: Staff Perspectives on Supporting Autonomy for Autistic Adults With Intellectual Disabilities. Journal of Applied Research in Intellectual Disabilities, 38(4), e70106-e70106. https://doi.org/10.1111/jar.70106
This publication is integrated into AutiHub through:
Authors
Abstract
BACKGROUND: Autonomy is a crucial component of self-determination, yet it is limited for Autistic individuals, especially those with co-occurring intellectual disabilities. We explored how professionals supported Autistic people with intellectual disabilities' autonomy. MATERIALS AND METHODS: This qualitative study used a community-based participatory approach. Nine staff who worked within a post-secondary transition programme to support Autistic young adults with intellectual disabilities were interviewed. Data were analysed using reflexive thematic analysis. RESULTS: The quality and depth of relationships between staff and Autistic adults with intellectual disabilities, and a safe, supportive environment, were critical to supporting autonomy. Staff also identified several skill areas that would benefit program participants to exert their autonomy, including self-advocacy, interoceptive awareness, working with others, and understanding choices. CONCLUSIONS: This crucial information for supporting autonomy for Autistic adults with intellectual disabilities provides a basis for enacting programme change to promote self-determination. Recommendations for staff and programme development are provided.
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.
-
Edward L. Deci , Richard M. Ryan (2013). The Importance of Autonomy for Development and Well-Being . In Self-Regulation and Autonomy (pp. 19-46). Cambridge University Press.Crossref OpenAlex OpenCitations
-
Christine Bigby , Julie Beadle-Brown (2018). Improving Quality of Life Outcomes in Supported Accommodation for People with Intellectual Disability: What Makes a Difference? Journal of Applied Research in Intellectual Disabilities, 31(2), e182-e200. Wiley.Crossref OpenAlex OpenCitations
-
David L. Morgan (2019). Basic and Advanced Focus Groups . SAGE Publications, Inc..Crossref OpenAlex OpenCitations
-
Jim Mansell , Julie Beadle-Brown (2012). Active Support Enabling and Empowering People with Intellectual Disabilities .Type: Book OpenAlex: https://openalex.org/W1539967824Crossref OpenAlex
-
Christine Bigby , Jacinta Douglas , Elizabeth Smith , Terry Carney , Shih-Ning Then , Ilan Wiesel (2022). “I used to call him a non-decision-maker - I never do that anymore”: parental reflections about training to support decision-making of their adult offspring with intellectual disabilities . Disability and Rehabilitation, 44(21), 6356-6364. Informa UK Limited.Crossref OpenAlex OpenCitations
-
Amanda A. Webster , Susan Bruck , Beth Saggers (2022). Supporting self-determination of autistic students in transitions . Research in Developmental Disabilities, 128, 104301. Elsevier BV.Crossref OpenAlex OpenCitations
-
Sally Thorne , Sheryl Reimer Kirkham , Katherine O'Flynn-Magee (2004). The Analytic Challenge in Interpretive Description . International Journal of Qualitative Methods, 3(1), 1-11. SAGE Publications.Crossref OpenAlex OpenCitations
-
Virginia Braun , Victoria Clarke (2021). One size fits all? What counts as quality practice in (reflexive) thematic analysis? Qualitative Research in Psychology, 18(3), 328-352. Informa UK Limited.Crossref OpenAlex OpenCitations
-
Karrie A. Shogren , Susan B. Palmer , Michael L. Wehmeyer , Kendra Williams-Diehm , Todd D. Little (2012). Effect of Intervention With the Self-Determined Learning Model of Instruction on Access and Goal Attainment . Remedial and Special Education, 33(5), 320-330. SAGE Publications.Crossref OpenAlex OpenCitations
-
Richard M. Ryan , Edward L. Deci (2006). Self‐Regulation and the Problem of Human Autonomy: Does Psychology Need Choice, Self‐Determination, and Will? Journal of Personality, 74(6), 1557-1586. Wiley.Crossref OpenAlex
-
Rachel Breen , Marie Y. Savundranayagam , Joseph B. Orange , Anita Kothari (2022). Quality home care for persons living with dementia: Personal support workers' perspectives in Ontario, Canada . Health & Social Care in the Community, 30(5), e2497-e2506. Wiley.Crossref OpenAlex OpenCitations
-
Sandy Thompson-Hodgetts , Kathryn Richards , Elly Park (2018). Preparing for the future: multi-stakeholder perspectives on autonomous goal setting for adolescents with autism spectrum disorders . Disability and Rehabilitation, 40(20), 2372-2379. Informa UK Limited.Crossref OpenAlex OpenCitations
-
A. Gardner (2012). A Practical Guide to Delivering Personalisation: Person-Centred Practice in Health and Social Care . British Journal of Social Work, 42(7), 1429-1430. Oxford University Press (OUP).OpenAlex
-
Sarah Cassidy , Jacqui Rodgers (2017). Understanding and prevention of suicide in autism . The Lancet Psychiatry, 4(6), e11. Elsevier BV.Crossref OpenAlex
-
Jacalyn G. Ryan *Autistic author. Learn more… , Heather M. Brown *Autistic author. Learn more… , Anne Borden , Christina Devlin , Adam Kedmy , Austin Lee et al. (2024). Being able to be myself: Understanding autonomy and autonomy-support from the perspectives of autistic adults with intellectual disabilities . Autism, 28(12), 3092-3104. SAGE Publications.
-
Kristen Gillespie-Lynch , Patricia J. Brooks , Fumio Someki , Rita Obeid , Christina Shane‐Simpson , Steven K. Kapp *Autistic author. Learn more… et al. (2015). Changing College Students’ Conceptions of Autism: An Online Training to Increase Knowledge and Decrease Stigma . Journal of Autism and Developmental Disorders, 45(8), 2553-2566. Springer Science and Business Media LLC.
-
Nancy Cheak‐Zamora , Anna Maurer-Batjer , Beth A. Malow , Ann Coleman (2020). Self-determination in young adults with autism spectrum disorder . Autism, 24(3), 605-616. SAGE Publications.Crossref OpenAlex OpenCitations
-
David Felce , Clare Bowley , Helen Baxter , Edwin Jones , Kathy Lowe , Eric Emerson (2000). The effectiveness of staff support: evaluating Active Support training using a conditional probability approach . Research in Developmental Disabilities, 21(4), 243-255. Elsevier BV.Crossref OpenAlex
-
Yu-Chi Chou , Michael L. Wehmeyer , Susan B. Palmer , Jaehoon Lee (2017). Comparisons of Self-Determination Among Students With Autism, Intellectual Disability, and Learning Disabilities: A Multivariate Analysis . Focus on Autism and Other Developmental Disabilities, 32(2), 124-132. SAGE Publications.Crossref OpenAlex OpenCitations
-
Jonathan A. Weiss , Priscilla Burnham Riosa (2015). Thriving in Youth with Autism Spectrum Disorder and Intellectual Disability . Journal of Autism and Developmental Disorders, 45(8), 2474-2486. Springer Science and Business Media LLC.Crossref OpenAlex
-
Lisa A. Croen , Ousseny Zerbo , Yinge Qian , Maria L Massolo , Steve Rich , Stephen Sidney et al. (2015). The health status of adults on the autism spectrum . Autism, 19(7), 814-823. SAGE Publications.Crossref OpenAlex OpenCitations
-
Barbara A. Israel , Amy J. Schulz , Edith A. Parker , Adam B. Becker (2001). Community-based Participatory Research: Policy Recommendations for Promoting a Partnership Approach in Health Research . Education for Health: Change in Learning & Practice, 14(2), 182-197. The Network: Towards Unity for Health.Crossref OpenAlex OpenCitations
-
Richard Melling (2014). Worlds of autism: across the spectrum of neurological difference . Educational Psychology in Practice, 30(2), 208-209. Informa UK Limited.OpenAlex
-
Evan E. Dean , Anne V. Kirby , Mayumi Hagiwara , Karrie A. Shogren , Deniz Tekin Ersan , Stephanie Brown (2021). Family Role in the Development of Self-Determination for Youth With Intellectual and Developmental Disabilities: A Scoping Review . Intellectual and Developmental Disabilities, 59(4), 315-334. Informa UK Limited.Crossref OpenAlex
-
Theo Lorenc , Mark Rodgers , David Marshall , Hollie Melton , Rebecca Rees , Kath Wright et al. (2018). Support for adults with autism spectrum disorder without intellectual impairment: Systematic review . Autism, 22(6), 654-668. SAGE Publications.Crossref OpenAlex OpenCitations
-
Christina Nicolaidis , Dora M Raymaker *Autistic author. Learn more… , Katherine McDonald , Sebastian Dern , Elesia Ashkenazy *Autistic author. Learn more… , W. Cody Boisclair *Autistic author. Learn more… et al. (2011). Collaboration Strategies in Nontraditional Community-Based Participatory Research Partnerships: Lessons From an Academic–Community Partnership With Autistic Self-Advocates . Progress in Community Health Partnerships: Research, Education, and Action, 5(2), 143-150. Project MUSE.
-
Jacquiline den Houting *Autistic author. Learn more… (2019). Neurodiversity: An insider’s perspective . Autism, 23(2), 271-273. SAGE Publications.
-
Kelly Mahler , Kerri Hample , Claudia Jones , Joseph Sensenig , Phoebe Thomasco , Claudia Hilton (2022). Impact of an Interoception-Based Program on Emotion Regulation in Autistic Children . Occupational Therapy International, 2022, 1-7. Wiley.Crossref OpenAlex OpenCitations
-
Jacquiline den Houting *Autistic author. Learn more… , Monique Botha *Autistic author. Learn more… , Eilidh Cage , Desiree R. Jones , So Yoon Kim (2021). Shifting stigma about autistic young people . The Lancet Child & Adolescent Health, 5(12), 839-841. Elsevier BV.Crossref
-
Jacinta Douglas , Christine Bigby (2020). Development of an evidence-based practice framework to guide decision making support for people with cognitive impairment due to acquired brain injury or intellectual disability . Disability and Rehabilitation, 42(3), 434-441. Informa UK Limited.Crossref OpenAlex OpenCitations
-
Roger J. Stancliffe , Anthony D. Harman , Sandy Toogood , Keith R. McVilly (2007). Australian Implementation and Evaluation of Active Support . Journal of Applied Research in Intellectual Disabilities, 20(3), 211-227. Wiley.Crossref OpenAlex OpenCitations
-
Denise DuBois , Stephanie H. Ameis , Meng-Chuan Lai , Manuel F. Casanova , Pushpal Desarkar (2016). Interoception in Autism Spectrum Disorder: A review . International Journal of Developmental Neuroscience, 52(1), 104-111. Wiley.Crossref OpenAlex OpenCitations
-
Martin Stevens , Jo Moriarty , Jill Manthorpe , Jess Harris , Shereen Hussein , Michelle Cornes (2021). What encourages care workers to continue working in intellectual disability services in England? Interview findings . Journal of Intellectual Disabilities, 25(1), 13-30. SAGE Publications.Crossref OpenAlex OpenCitations
-
Johnmarshall Reeve (2006). Teachers as Facilitators: What Autonomy‐Supportive Teachers Do and Why Their Students Benefit . The Elementary School Journal, 106(3), 225-236. University of Chicago Press.Crossref OpenAlex OpenCitations
-
Julie Emond Pelletier , Mireille Joussemet (2017). The Benefits of Supporting the Autonomy of Individuals with Mild Intellectual Disabilities: An Experimental Study . Journal of Applied Research in Intellectual Disabilities, 30(5), 830-846. Wiley.Crossref OpenAlex OpenCitations
-
Fiona Macdonald , Eleanor Bentham , Jenny Malone (2018). Wage theft, underpayment and unpaid work in marketised social care . The Economic and Labour Relations Review, 29(1), 80-96. Cambridge University Press (CUP).Crossref OpenAlex OpenCitations
-
Michael L. Wehmeyer (1999). A Functional Model of Self-Determination . Focus on Autism and Other Developmental Disabilities, 14(1), 53-61. SAGE Publications.Crossref OpenAlex OpenCitations
-
Susan B. Palmer , Michael L. Wehmeyer , Karrie A. Shogren (2017). The Development of Self-Determination During Childhood . In Development of self-determination through the life-course (pp. 71-88). Springer Netherlands.Crossref OpenAlex OpenCitations
-
Barbara A. Israel , Chris M. Coombe , Rebecca R. Cheezum , Amy J. Schulz , Robert J. McGranaghan , Richard Lichtenstein et al. (2010). Community-Based Participatory Research: A Capacity-Building Approach for Policy Advocacy Aimed at Eliminating Health Disparities . American Journal of Public Health, 100(11), 2094-2102. American Public Health Association.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.
-
Noud Frielink , Carlo Schuengel , Petri J. C. M. Embregts (2018). Autonomy support in people with mild‐to‐borderline intellectual disability: Testing the Health Care Climate Questionnaire‐Intellectual Disability . Journal of Applied Research in Intellectual Disabilities, 31(1), 159-163. Wiley.Crossref OpenAlex OpenCitations
-
Karrie A. Shogren , Michael L. Wehmeyer , Susan B. Palmer , Anjali J. Forber-Pratt , Todd J. Little , Shane Lopez (2015). Causal Agency Theory: Reconceptualizing a Functional Model of Self-Determination . Education and Training in Autism and Developmental Disabilities, 50(3), 251-263. SAGE Publications.Crossref OpenAlex
-
Ryan (2017). Self-Determination Theory: Basic Psychological Needs in Motivation, Development, and Wellness . Guilford Press.Crossref OpenAlex OpenCitations
-
Yunhe Huang , Julian N Trollor , Kitty‐Rose Foley , Samuel R. C. Arnold (2023). “I've Spent My Whole Life Striving to Be Normal”: Internalized Stigma and Perceived Impact of Diagnosis in Autistic Adults . Autism in Adulthood, 5(4), 423-436. SAGE Publications.Crossref OpenAlex OpenCitations
-
Karrie A. Shogren , Michael L. Wehmeyer , Susan B. Palmer (2017). Causal Agency Theory . In Development of Self-Determination Through the Life-Course (pp. 55-67). Springer Netherlands.Crossref OpenAlex OpenCitations
-
Desiree R. Jones , Kilee M. DeBrabander , Noah J. Sasson (2021). Effects of autism acceptance training on explicit and implicit biases toward autism . Autism, 25(5), 1246-1261. SAGE Publications.Crossref OpenAlex OpenCitations
-
George C. Murray , Karen McKenzie , Dale Metcalfe , Kathryn Whelan , Aja Louise Murray (2022). Exploring the relative importance of factors that influence the job retention of social care staff working in intellectual disability services . British Journal of Learning Disabilities, 50(1), 13-18. Wiley.Crossref OpenAlex OpenCitations
-
Arvid Nikolai Kildahl , Sissel Berge Helverschou (2024). Post-traumatic stress disorder and experiences involving violence or sexual abuse in a clinical sample of autistic adults with intellectual disabilities: Prevalence and clinical correlates . Autism, 28(5), 1075-1089. SAGE Publications.Crossref OpenAlex OpenCitations
-
P. B. Kuld , N. Frielink , M. Zijlmans , C. Schuengel , P. J. C. M. Embregts (2023). Promoting self‐determination of persons with severe or profound intellectual disabilities: a systematic review and meta‐analysis . Journal of Intellectual Disability Research, 67(7), 589-629. Wiley.Crossref OpenAlex OpenCitations
-
Mahler K. (2017). Interoception: The Eighth Sensory System . Interoception: The Eighth Sensory System.Type: OtherCrossref
-
Vicente Martínez-Tur , Yolanda Estreder , Carolina Moliner , Esther Gracia , Luminița Pătraș , Ana Zornoza (2018). Dialogue between workers and family members is related to their attitudes towards self-determination of individuals with intellectual disability . Journal of Intellectual & Developmental Disability, 43(3), 370-379. Informa UK Limited.Crossref OpenAlex OpenCitations
-
Einat Yaar , Eynat Gal , Gary Bedell , Liron Lamash (2024). SPAN-ASD: Pilot implementation to promote functional goals of autistic adolescents and young adults . Research in Developmental Disabilities, 155, 104864. Elsevier BV.Crossref OpenAlex OpenCitations
-
Guðrún Stefánsdóttir , Kristín Björnsdóttir , Ástríður Stefánsdóttir (2018). Autonomy and People with Intellectual Disabilities Who Require More Intensive Support . Scandinavian Journal of Disability Research, 20(1), 162-171. Stockholm University Press.Crossref OpenAlex OpenCitations
-
Caroline Treweek , Chantelle Wood , Jilly Martin , Megan Freeth (2019). Autistic people’s perspectives on stereotypes: An interpretative phenomenological analysis . Autism, 23(3), 759-769. SAGE Publications.Crossref OpenAlex OpenCitations
-
Fionnuala Rupchand , Sonja Kormann (2024). Intersubjective Discoveries on Parenting Autistic Sons: Challenges to Ableist, Normative Narratives of Deficit . Transactional Analysis Journal, 54(1), 31-46. Informa UK Limited.Crossref OpenAlex OpenCitations
-
Sally Thorne (2025). Interpretive Description . Routledge.OpenAlex
-
Murphy B. (2017). Person‐Centred Active Support Training Pack . Person‐Centred Active Support Training Pack.Type: OtherCrossref
-
Christina Nicolaidis , Dora M Raymaker *Autistic author. Learn more… , Steven K. Kapp *Autistic author. Learn more… , Amelia E.V. Baggs , Elesia Ashkenazy *Autistic author. Learn more… , Katherine McDonald et al. (2019). The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants . Autism, 23(8), 2007-2019. SAGE Publications.
-
Orsini M (2013). Worlds of Autism: Across the Spectrum of Neurological Difference . Worlds of Autism: Across the Spectrum of Neurological Difference, 1.Type: OtherCrossref
-
TC Waisman *Autistic author. Learn more… , Zachary J. Williams *Autistic author. Learn more… , Eilidh Cage , Siva priya Santhanam , Iliana Magiati , Patrick Dwyer *Autistic author. Learn more… et al. (2023). Learning from the experts: Evaluating a participatory autism and universal design training for university educators . Autism, 27(2), 356-370. SAGE Publications.
-
Raymaker D (2013). Worlds of Autism: Across the Spectrum of Neurological Difference . Worlds of Autism: Across the Spectrum of Neurological Difference, 169.Type: OtherCrossref
-
Sandy Thompson-Hodgetts , Jacalyn G. Ryan *Autistic author. Learn more… , Emily C. Coombs *Autistic author. Learn more… , Heather M. Brown *Autistic author. Learn more… , Adrian Xavier , Christina Devlin et al. (2023). Toward understanding and enhancing self-determination: a qualitative exploration with autistic adults without co-occurring intellectual disability . Frontiers in Psychiatry, 14, 1250391-1250391. Frontiers Media SA.
-
Sanderson H. (2012). A Practical Guide to Delivering Personalisation: Person‐Centred Practice in Health and Social Care . A Practical Guide to Delivering Personalisation: Person‐Centred Practice in Health and Social Care.Type: OtherCrossref
-
David Schena , Rocío Rosales , Emily Rowe (2023). Teaching Self-Advocacy Skills: A Review and Call for Research . Journal of Behavioral Education, 32(4), 641-689. Springer Science and Business Media LLC.Crossref OpenAlex
-
Sally Thorne (2016). Interpretive Description . Routledge.Crossref OpenCitations
-
(n.d.). United Nations. 2006.“Convention on the Rights of Persons With Disabilities A/RES/61/106.” https://www.un.org/disabilities/documents/convention/convoptprot‐e.pdf .Type: OtherCrossref
-
(2022). Interoception: the eighth sensory system . In Autistic Logistics (pp. 85-98). Jessica Kingsley Publishers.OpenAlex
-
(n.d.). Walker N. 2014.“Neurodiversity: Some Basic Terms & Definitions – Neuroqueer.” https://neuroqueer.com/neurodiversity‐terms‐and‐definitions/ .Type: OtherCrossref