Participatory systems mapping: Can this approach improve how services work for autistic people?

Barbrook-Johnson P. Penn A. S. (2022a). Causal loop diagrams. In Systems mapping: How to build and use causal models of systems (pp. 47–59). Springer.

Barbrook-Johnson P. Penn A. S. (2022b). What data and evidence can you build system maps from? In Systems mapping: How to build and use causal models of systems (pp. 129–144). Palgrave Macmillan. https://doi.org/10.1007/978-3-031-01919-7_9

Birtwell K. Morris R. Armitage C. J. (2022). Combining timelining and storyboarding to create a novel method for INtervention DesIGn with stakehOlders: INDIGO. International Journal of Qualitative Methods, 21, 16094069221127147.

Bishop-Fitzpatrick L. Rubenstein E. (2019). The physical and mental health of middle aged and older adults on the autism spectrum and the impact of intellectual disability. Research in Autism Spectrum Disorders, 63, 34–41.

Blake C. Rigby B. P. Armstrong-Moore R. Barbrook-Johnson P. Gilbert N. Hassannezhad M. Moore L. (2024). Participatory systems mapping for population health research, policy and practice: Guidance on method choice and design.

Bowman K. S. Suarez V. D. Weiss M. J. (2021). Standards for interprofessional collaboration in the treatment of individuals with autism. Behavior Analysis in Practice, 14(4), 1191–1208.

Brede J. Cage E. Trott J. Palmer L. Smith A. Serpell L. Russell A. (2022). ‘We have to try to find a way, a clinical bridge’-autistic adults’ experience of accessing and receiving support for mental health difficulties: A systematic review and thematic meta-synthesis. Clinical Psychology Review, 93, 102131.

Calleja S. Islam F. M. A. Kingsley J. McDonald R. (2020). Healthcare access for autistic adults: A systematic review. Medicine, 99(29), Article e20899.

Courcy I. Koniou I. (2024). A scoping review of the use of photo-elicitation and photovoice with autistic and neurodiverse people. Moving towards more inclusive research? Disability & Society, 39(5), 1317–1338.

Crowson S. Poole D. Scargill K. Freeth M. (2024). Understanding the post-diagnostic support priorities of autistic adults in the United Kingdom: A co-produced modified Delphi study. Autism, 28(4), 854–865.

Dawson M. Fletcher-Watson S. (2022). When autism researchers disregard harms: A commentary. Autism, 26(2), 564–566.

Doherty M. Neilson S. O’Sullivan J. Carravallah L. Johnson M. Cullen W. Shaw S. C. (2022). Barriers to healthcare and self-reported adverse outcomes for autistic adults: A cross-sectional study. BMJ Open, 12(2), Article e056904.

Fletcher-Watson S. Brook K. Hallett S. Murray F. Crompton C. J. (2021). Inclusive practices for neurodevelopmental research. Current Developmental Disorders Reports, 8(2), 88–97.

Goedhart N. S. Pittens C. A. C. M. Tončinić S. Zuiderent-Jerak T. Dedding C. Broerse J. E. W. (2021). Engaging citizens living in vulnerable circumstances in research: A narrative review using a systematic search. Research Involvement and Engagement, 7(1), 59.

Grant S. Norton S. Weiland R. F. Scheeren A. M. Begeer S. Hoekstra R. A. (2022). Autism and chronic ill health: An observational study of symptoms and diagnoses of central sensitivity syndromes in autistic adults. Molecular Autism, 13(1), 7.

Grindell C. Coates E. Croot L. O’Cathain A. (2022). The use of co-production, co-design and co-creation to mobilise knowledge in the management of health conditions: A systematic review. BMC Health Services Research, 22(1), Article 877.

Hallett S. Crompton C. J. (2018). Too complicated to treat? Autistic people seeking mental health support in Scotland. Autistic Mutual Aid Society Edinburgh (AMASE). www.amase.org.uk/mhreport.

Hamdan S. Z. Bennett A. (2024). Autism-friendly healthcare: A narrative review of the literature. Cureus, 16(7), Article e64108. https://doi.org/10.7759/cureus.64108

Hand B. N. Angell A. M. Harris L. Carpenter L. A. (2020). Prevalence of physical and mental health conditions in Medicare-enrolled, autistic older adults. Autism, 24(3), 755–764.

Head B. W. Alford J. (2015). Wicked problems: Implications for public policy and management. Administration & Society, 47(6), 711–739.

Healey M. Flint A. Harrington K. (2014). Engagement through partnership: Students as partners in learning and teaching in higher education. HEA.

Kenzie E. S. Patzel M. Nelson E. Lovejoy T. Ono S. Davis M. M. (2022). Long drives and red tape: Mapping rural veteran access to primary care using causal-loop diagramming. BMC Health Services Research, 22(1), Article 1075.

Laxman D. J. Taylor J. L. DaWalt L. S. Greenberg J. S. Mailick M. R. (2019). Loss in services precedes high school exit for teens with autism spectrum disorder: A longitudinal study. Autism Research: Official Journal of the International Society for Autism Research, 12(6), 911–921. https://doi.org/10.1002/aur.2113

Massa A. DeNigris D. Gillespie-Lynch K. (2020). Theatre as a tool to reduce autism stigma? Evaluating ‘beyond spectrums’. Research in Drama Education: The Journal of Applied Theatre and Performance, 25(4), 613–630.

McGinty E. E. Eisenberg M. D. (2022). Mental health treatment gap – The implementation problem as a research problem. JAMA Psychiatry, 79(8), 746–747.

McLean K. J. Haas M. Koenig J. Horvath M. Vigil M. Werner N. E. Bishop L. (2024). ‘I’m dealing with a health care system that doesn’t get it’: Barriers and facilitators to inclusive healthcare for autistic adults. Autism, 28(6), 1382–1393.

Meadows D. H. (2008). Thinking in systems: A primer. Chelsea Green Publishing.

Michail M. Waring J. Occhipinti J. A. Witt K. Skinner A. Lamblin M. . . .Robinson J. (2025). An evaluation of the feasibility, value and impact of using participatory modelling to inform the development of a regional system dynamics model for youth suicide prevention. Health Research Policy and Systems, 23(1), 88.

Ngan Nguyen L. K. McCabe H. Howick S. Megiddo I. Sengupta S. Morton A. (2025). Exploring the drivers of unsustainable pressures in health and social care: A qualitative system dynamics approach. Social Science & Medicine, 371, 117913.

Nicolaidis C. Raymaker D. Kapp S. K. Baggs A. Ashkenazy E. McDonald K. Joyce A. (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.

Nicolaidis C. Raymaker D. McDonald K. Kapp S. Weiner M. Ashkenazy E. Gerrity M. Kripke C. Platt L. Baggs A. (2016). The development and evaluation of an online healthcare toolkit for autistic adults and their primary care providers. Journal of General Internal Medicine, 31(10), 1180–1189. https://doi.org/10.1007/s11606-016-3763-6

Peters D. H. (2014). The application of systems thinking in health: Why use systems thinking? Health Research Policy and Systems, 12(1), 51.

Raymaker D. M. (2016). Intersections of critical systems thinking and community based participatory research: A learning organization example with the autistic community. Systemic Practice and Action Research, 29(5), 405–423.

Shattuck P. T. Garfield T. Roux A. M. Rast J. E. Anderson K. Hassrick E. M. Kuo A. (2020). Services for adults with autism spectrum disorder: A systems perspective. Current Psychiatry Reports, 22, 1–12.

Shattuck P. T. Narendorf S. C. Cooper B. Sterzing P. R. Wagner M. Taylor J. L. (2012). Postsecondary education and employment among youth with an autism spectrum disorder. Pediatrics, 129(6), 1042–1049.

Shaw S. C. Carravallah L. Johnson M. O’Sullivan J. Chown N. Neilson S. Doherty M. (2024). Barriers to healthcare and a ‘triple empathy problem’may lead to adverse outcomes for autistic adults: A qualitative study. Autism, 28(7), 1746–1757.

Taylor H. Ingham B. Mason D. Finch T. Wilson C. Scarlett C. Moss S. Buckley C. Urbanowicz A. Raymaker D. Seiboth C. Lees R. Garland D. Osbourne M. Lennox N. Cooper S. A. Nicolaidis C. Parr J. R. (2023). Co-design of an NHS primary care health check for autistic adults. Autism, 27(4), 1079–1091. https://doi.org/10.1177/13623613221132921

Turcotte P. Mathew M. Shea L. L. Brusilovskiy E. Nonnemacher S. L. (2016). Service needs across the lifespan for individuals with autism. Journal of Autism and Developmental Disorders, 46(7), 2480–2489.

Ward J. H. Weir E. Allison C. Baron-Cohen S. (2023). Increased rates of chronic physical health conditions across all organ systems in autistic adolescents and adults. Molecular Autism, 14(1), 35.

Zerbo O. Qian Y. Ray T. Sidney S. Rich S. Massolo M. Croen L. A. (2019). Health care service utilization and cost among adults with autism spectrum disorders in a US integrated health care system. Autism in Adulthood, 1(1), 27–36.