“We are the stakeholders with the most at stake”: scientific and autism community co-researchers reflect on their collaborative experience in the CONNECT project
Open accessAbstract
Background: Little research describes the everyday challenges and needs of autistic adults. In order to fill this data gap, the CONtiNuity of carE and support for autistiC adulTs (CONNECT) project set out to learn about the health and well-being of autistic adults as well as their service and support needs. To do so, CONNECT welcomed autistic adults and caregivers of autistic adults as members of the research team, alongside researchers, policy-makers, service providers and health professionals. Autistic adults were involved in every stage of the research project and participated in team meetings held several times a year as well as in numerous email exchanges. Methods: Two feedback questionnaires were designed for this study: one for the scientific co-researchers and one for the autism community co-researchers (the project’s “patient partners”). Although the surveys varied from one another, they probed respondents to provide critical and constructive comments on issues that were central to their engagement in CONNECT. Four scientific co-researchers and four autism community co-researchers filled out the questionnaires. A comparative analysis was carried out on the responses provided to the open- and closed-ended survey questions as well as on complimentary data collected from the team’s documents. Results: CONNECT was seen as a positive experience for both groups. Highlights included: helping tailor and design research and its relevant materials to better suit the needs of the autistic community; establishing relationships and creating long-lasting friendships with other autistic adults; gaining a better understanding of the research process; and forging new connections with regional, national and international stakeholders. Areas for improvement include: establishing clear roles, responsibilities and expectations from the start; outlining a strategy to address unforeseen changes in project leadership; and creating a platform allowing for the involvement and participation of a more representative sample of adults on the autism spectrum. Conclusions: While not without its challenges, CONNECT demonstrates that a collaborative multi-stakeholder approach engaging autistic adults can be an effective model for conducting research on adult autism. Autistic adults and their caregivers can make the research process more open and accessible and make its outputs more relevant, useful and meaningful to the wider autistic adult community.
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
This focus is in sharp contrast to the stated research priorities of community members - autistic people, their family members, educators, clinicians and other professionals - who have consistently called for research on areas that are of more immediate, practical concern or for basic science research that may be more straightforwardly translated into applications.
“This focus is in sharp contrast to the stated research priorities of community members – autistic people, their family members, educators, clinicians and other professionals – who have consistently called for research on areas that are of more immediate, practical concern or for basic science research that may be more straightforwardly translated into applications (Frazier et al., 2018; Jose et al”
From Annual Research Review: Shifting from ‘normal science’ to neurodiversity in autism science (2022) · cites this paper as Jose et al., 2020
Split into 2 atoms — 0 confirmed, 2 partially supported, 0 disputed, 0 misattributed, 0 unverifiable. Expand the claim to see per-atom verdicts.
Experimental — accuracy not yet measuredEffective partnerships in autism research depend on strong relationships, including mutual trust, respect for each other's expertise and ways of being, and openness to learning from one another.
“The few studies that have reflected upon lessons learnt from such partnerships have suggested that effective partnerships depend on strong relationships – that is, those in which there is mutual trust between partners, respect for each other’s expertise and ways of being, and an openness to learning from one another (Fletcher-Watson et al., 2019; Jose et al., 2020; Le Cunff et al., 2023; Maye et a”
From ‘You feel part of something bigger’: Stakeholders’ experiences of a long-term community–academic participatory research partnership (2025) · cites this paper as Jose et al., 2020
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
The self-check needs the paper’s full text.
Cites
Diagnostic and Statistical Manual of Mental Disorders
American Psychiatric Association (2013) · doi:10.1176/appi.books.9780890425596 · Cited by 116,369 · see citing works
Diagnostic and Statistical Manual of Mental Disorders(DSM)
Leong, F. T. L. (2008) · Sage eBooks · doi:10.4135/9781412963978.n182 · Cited by 10,858 · see citing works
Staniszewska, S., Brett, J., Simera, I., Seers, K., Mockford, C., Goodlad, S., Altman, D. G., Moher, D., Barber, R., Denegri, S., et al. (2017) · BMJ · doi:10.1136/bmj.j3453 · Cited by 1,983 · see citing works
Staniszewska, S., Brett, J., Simera, I., Seers, K., Mockford, C., Goodlad, S., Altman, D. G., Moher, D., Barber, R., Denegri, S., et al. (2017) · Research Involvement and Engagement · doi:10.1186/s40900-017-0062-2 · Cited by 1,643 · cited 2× · see citing works
“With the aim of contributing to the evidence base on patient and public involvement in research, and ensuring transparent and complete reporting of these study results, the long-form version of the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) [31] was used to design and report this study (Add…”
MethodCanadian Institutes of Health Research
Cooney-Birch, J. (2019) · Palgrave Macmillan UK eBooks · doi:10.1057/978-1-349-95943-3_219 · Cited by 1,457 · see citing works
Brett, J., Staniszewska, S., Mockford, C., Herron-Marx, S., Hughes, J., Tysall, C., & Suleman, R. (2014) · The Patient - Patient-Centered Outcomes Research · doi:10.1007/s40271-014-0065-0 · Cited by 839 · see citing works
What should autism research focus upon? Community views and priorities from the United Kingdom
Pellicano, E., Dinsmore, A., & Charman, T. (2014) · Autism · doi:10.1177/1362361314529627 · Cited by 800 · see citing works
Making the future together: Shaping autism research through meaningful participation
Fletcher-Watson, S., Adams, J., Brook, K., Charman, T., Crane, L., Cusack, J., Leekam, S., Milton, D., Parr, J. R., & Pellicano, E. (2019) · Autism · doi:10.1177/1362361318786721 · Cited by 776 · see citing works
Identifying the lost generation of adults with autism spectrum conditions
Lai, M.-C., & Baron-Cohen, S. (2015) · The Lancet Psychiatry · doi:10.1016/s2215-0366(15)00277-1 · Cited by 756 · see citing works
Attention, monotropism and the diagnostic criteria for autism
Murray, D., Lesser, M., & Lawson, W. (2005) · Autism · doi:10.1177/1362361305051398 · Cited by 558 · see citing works
The level and nature of autistic intelligence
Dawson, M., Soulières, I., Ann Gernsbacher, M., & Mottron, L. (2007) · Psychological Science · doi:10.1111/j.1467-9280.2007.01954.x · Cited by 549 · see citing works
Nicolaidis, C., Raymaker, D., Kapp, S. K., Baggs, A., Ashkenazy, E., McDonald, K., Weiner, M., Maslak, J., Hunter, M., & Joyce, A. (2019) · Autism · doi:10.1177/1362361319830523 · Cited by 547 · see citing works
Nicolaidis, C., Raymaker, D. M., Ashkenazy, E., McDonald, K. E., Dern, S., Baggs, A. E., Kapp, S. K., Weiner, M., & Boisclair, W. C. (2015) · Autism · doi:10.1177/1362361315576221 · Cited by 513 · see citing works
The Personal is Political: Developing new subjectivities through participatory action research
Cahill, C. (2007) · Gender Place & Culture · doi:10.1080/09663690701324904 · Cited by 365 · see citing works
Bird, M., Ouellette, C., Whitmore, C., Li, L. H., Nair, K., McGillion, M. H., Yost, J., Banfield, L. E., Campbell, E., & Carroll, S. L. (2020) · Health Expectations · doi:10.1111/hex.13040 · Cited by 312 · see citing works
Nicolaidis, C., Raymaker, D., McDonald, K., Dern, S., Ashkenazy, E., Boisclair, C., Robertson, S., & Baggs, A. (2011) · Progress in Community Health Partnerships: Research, Education, and Action · doi:10.1353/cpr.2011.0022 · Cited by 292 · see citing works
Frank, L. B., Forsythe, L. P., Ellis, L. E., Schrandt, S., Sheridan, S., Gerson, J., Konopka, K., & Daugherty, S. E. (2015) · Quality of Life Research · doi:10.1007/s11136-014-0893-3 · Cited by 288 · see citing works
Autism spectrum disorder in adults: diagnosis, management, and health services development
Murphy, C. M., Wilson, C., Robertson, D., Ecker, C., Daly, E., Hammond, N., Galanopoulos, A., Dud, I., Murphy, D., & McAlonan, G. M. (2016) · Neuropsychiatric Disease and Treatment · doi:10.2147/ndt.s65455 · Cited by 268 · see citing works
Transition into Young Adulthood: National Autism Indicators Report
Roux, A. M., Rast, J. E., Anderson, K. A., Rava, J. A., & Shuttuck, P. (2015) · doi:10.17918/nairtransition2015 · Cited by 251 · see citing works
Gotham, K., Marvin, A. R., Taylor, J. L., Warren, Z., Anderson, C. M., Law, P. A., Law, J. K., & Lipkin, P. H. (2015) · Autism · doi:10.1177/1362361315583818 · Cited by 217 · see citing works
Improving research about us, with us: a draft framework for inclusive autism research
Chown, N., Robinson, J., Beardon, L., Downing, J., Hughes, L., Leatherland, J., Fox, K., Hickman, L., & MacGregor, D. (2017) · Disability & Society · doi:10.1080/09687599.2017.1320273 · Cited by 216 · see citing works
Autism: A New Introduction to Psychological Theory and Current Debate
Fletcher-Watson, S., & Happé, F. (2019) · doi:10.4324/9781315101699 · Cited by 184 · see citing works
Mottron, L. (2011) · Nature · doi:10.1038/479033a · Cited by 157 · see citing works
Designing Personas with Empathy Map
Ferreira, B., Silva, W., de Oliveira, E. C. C., & Conte, T. U. (2015) · Proceedings/Proceedings of the ... International Conference on Software Engineering and Knowledge Engineering · doi:10.18293/seke2015-152 · Cited by 157 · see citing works
Nicolaidis, C., Raymaker, D., McDonald, K., Kapp, S., Weiner, M., Ashkenazy, E., Gerrity, M., Kripke, C., Platt, L., & Baggs, A. (2016) · Journal of General Internal Medicine · doi:10.1007/s11606-016-3763-6 · Cited by 150 · see citing works
Happé, F. G., Mansour, H., Barrett, P., Brown, T., Abbott, P., & Charlton, R. A. (2016) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-016-2886-2 · Cited by 145 · see citing works
Participatory research: What is the history? Has the purpose changed?
Macaulay, A. C. (2016) · Family Practice · doi:10.1093/fampra/cmw117 · Cited by 143 · see citing works
Pellicano, E., Dinsmore, A., & Charman, T. (2014) · PLoS ONE · doi:10.1371/journal.pone.0109946 · Cited by 141 · see citing works
Carroll, S. L., Embuldeniya, G., Abelson, J., McGillion, M. H., Berkesse, A., & Healey, J. S. (2017) · Patient Preference and Adherence · doi:10.2147/ppa.s135457 · Cited by 113 · see citing works
Worth the Risk? Muddled Relationships in Community-Based Participatory Research
Mayan, M. J., & Daum, C. (2015) · Qualitative Health Research · doi:10.1177/1049732315618660 · Cited by 101 · see citing works
Autonomy, the Critical Journal of Interdisciplinary Autism Studies
Arnold, L. R. (2019) · Springer eBooks · doi:10.1007/978-981-13-8437-0_15 · Cited by 89 · see citing works
Snow, M. E., Tweedie, K., & Pederson, A. (2018) · BMC Health Services Research · doi:10.1186/s12913-018-2969-1 · Cited by 88 · see citing works
Co-building a patient-oriented research curriculum in Canada
Bell, T., Vat, L. E., McGavin, C., Keller, M., Getchell, L. E., Rychtera, A., & Fernández, N. (2019) · Research Involvement and Engagement · doi:10.1186/s40900-019-0141-7 · Cited by 80 · see citing works
Priority service needs and receipt across the lifespan for individuals with autism spectrum disorder
Lai, J. K. Y., & Weiss, J. A. (2017) · Autism Research · doi:10.1002/aur.1786 · Cited by 79 · see citing works
Recruiting patients as partners in health research: a qualitative descriptive study
Vat, L. E., Ryan, D., & Etchegary, H. (2017) · Research Involvement and Engagement · doi:10.1186/s40900-017-0067-x · Cited by 72 · see citing works
Development of the AASPIRE Web Accessibility Guidelines for Autistic Web Users
Raymaker, D., Kapp, S. K., McDonald, K., Weiner, M., Ashkenazy, E., & Nicolaidis, C. (2019) · Autism in Adulthood · doi:10.1089/aut.2018.0020 · Cited by 70 · see citing works
John, B. S., Mihaila, I., Dorrance, K., DaWalt, L. S., & Ausderau, K. (2018) · Intellectual and developmental disabilities · doi:10.1352/1934-9556-56.5.251 · Cited by 68 · see citing works
Ethical challenges of community based participatory research: exploring researchers’ experience
Wilson, E., Kenny, A. J., & Dickson‐Swift, V. (2017) · International Journal of Social Research Methodology · doi:10.1080/13645579.2017.1296714 · Cited by 67 · see citing works
a qualitative study of autism policy in canada: Seeking consensus on children’s services
Shepherd, C. A., & Waddell, C. (2015) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-015-2502-x · Cited by 67 · see citing works
Including Speaking and Nonspeaking Autistic Voice in Research
Lebenhagen, C. (2019) · Autism in Adulthood · doi:10.1089/aut.2019.0002 · Cited by 35 · see citing works
A critical reflection on the development of the Participatory Autism Research Collective (PARC)
Milton, D. E. M., Ridout, S., Kourti, M., Loomes, G., & Martin, N. C. (2019) · Tizard Learning Disability Review · doi:10.1108/tldr-09-2018-0029 · Cited by 28 · see citing works
Khullar, V., Singh, H. P., & Bala, M. (2020) · Advances in psychology, mental health, and behavioral studies (APMHBS) book series · doi:10.4018/978-1-7998-1185-5.ch005 · Cited by 16 · see citing works
José, C., George-Zwicker, P., Bouma, A., Tardif, L., Pugsley, D., Bélanger, M. F., Robichaud, M., & Gaudet, J. (2021) · Autism in Adulthood · doi:10.1089/aut.2020.0027 · Cited by 9 · see citing works
Self-citationMottron, L., & Dawson, M. (2013) · Handbook of clinical neurology · doi:10.1016/b978-0-444-52891-9.00029-4 · Cited by 9 · see citing works
An Evaluation of In-Person and Online Engagement in Central Newfoundland
Wilton, P., Neville, D., Audas, R., Brown, H. A., & Chafe, R. (2015) · Healthcare policy · doi:10.12927/hcpol.2016.24446 · Cited by 6 · see citing works
Flagged first, then by citations
Research works printed but not linked: 1
- [28]Jose C George-Zwicker P Bouma A Tardif L Robichaud M Gaudet J The CONNECT project on adult autism: goals, results, and lessons learned 2019 Fredericton Presentation delivered at the Atlantic Provinces Autism Conference
Cited by
Sorted by citations
Annual Research Review: Shifting from ‘normal science’ to neurodiversity in autism science
Pellicano, E., & den Houting, J. (2022) · Journal of Child Psychology and Psychiatry · doi:10.1111/jcpp.13534 · Cited by 744 · see citing works
The Neurodiversity Approach(es): What Are They and What Do They Mean for Researchers?
Dwyer, P. (2022) · Human Development · doi:10.1159/000523723 · Cited by 672 · see citing works
A capabilities approach to understanding and supporting autistic adulthood
Pellicano, E., Fatima, U., Hall, G., Heyworth, M., Lawson, W., Lilley, R., Mahony, J., & Stears, M. (2022) · Nature Reviews Psychology · doi:10.1038/s44159-022-00099-z · Cited by 237 · see citing works
Pellicano, E., Lawson, W. B., Hall, G., Mahony, J., Lilley, R., Heyworth, M., Clapham, H., & Yudell, M. (2021) · Autism in Adulthood · doi:10.1089/aut.2021.0039 · Cited by 93 · see citing works
An Expert Roundtable Discussion on Experiences of Autistic Autism Researchers
Dwyer, P. S. R., Acevedo, S. M., Brown, H. M., Grapel, J., Jones, S. C., Nachman, B. R., Raymaker, D., & Williams, Z. J. (2021) · Autism in Adulthood · doi:10.1089/aut.2021.29019.rtb · Cited by 44 · see citing works
‘We have so much to offer’: Community members’ perspectives on autism research
Haar, T., Brownlow, C., Hall, G., Heyworth, M., Lawson, W. B., Poulsen, R. E., Reinisch, T., & Pellicano, E. (2024) · Autism · doi:10.1177/13623613241248713 · Cited by 27 · see citing works
Riches, S., Hammond, N., Bianco, M., Fialho, C., & Acland, J. (2023) · The Cognitive Behaviour Therapist · doi:10.1017/s1754470x23000053 · Cited by 17 · see citing works
“Involving people with lived experience in the development and coproduction of psychological interventions and mental health provision has been shown to lead to services and research that are better at meeting the needs of service users (Cox and Miller, 2021; Gowen et al., 2019; Jose et al., 2020; Thornicroft and Tanse…”
BackgroundAutistic Co-Led Community Priorities for Future Autism Research in Aotearoa New Zealand
Emerson, L., Monk, R., van der Meer, L. A. J., Sutherland, D., & McLay, L. (2023) · Autism in Adulthood · doi:10.1089/aut.2022.0109 · Cited by 13 · see citing works
Applying a public health approach to autism research: A framework for action
Schendel, D., Roux, A. M., Hassrick, E. M., Lyall, K., Shea, L., Vivanti, G., Wieckowski, A. T., Newschaffer, C. J., & Robins, D. L. (2022) · Autism Research · doi:10.1002/aur.2689 · Cited by 14 · see citing works
Gibbs, V., Cai, R. Y., Love, A. M. A., Edwards, C., & Ansari, M. A. (2024) · Autism in Adulthood · doi:10.1089/aut.2024.0272 · Cited by 10 · see citing works
McConnell, K., Keenan, C., Storey, C., & Thurston, A. (2024) · Campbell Systematic Reviews · doi:10.1002/cl2.1405 · Cited by 9 · see citing works
Smith, J., Rabba, A. S., Datta, P., Dresens, E., Wang, R., Cong, L., Dang, N., Hall, G., Heyworth, M., Lawson, W. B., et al. (2023) · Autism & Developmental Language Impairments · doi:10.1177/23969415231210482 · Cited by 6 · see citing works
Tagavi, D. M., Dai, Y. G., Berger, N. I., Petruccelli, M., Scott, S., Oosting, D., Howard, M., Carter, A. S., Ingersoll, B. R., Wainer, A., et al. (2024) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-024-06455-7 · Cited by 6 · see citing works
Phan, J. (2024) · Autism in Adulthood · doi:10.1089/aut.2023.0182 · Cited by 3 · see citing works
Pellicano, E., Bent, C. A., Iacono, T., Capes, K., Upson, S., & Hudry, K. (2025) · Autism · doi:10.1177/13623613251348485 · Cited by 2 · see citing works
“…is, those in which there is mutual trust between partners, respect for each other’s expertise and ways of being, and an openness to learning from one another (Fletcher-Watson et al., 2019; Jose et al., 2020; Le Cunff et al., 2023; Maye et al., 2022; Nicolaidis et al., 2019; Stark et al., 2021).”
Considerations for engaging in patient-oriented research with injured workers
Nagra, G., Hung, P., Peters, M. R., Guptill, C. A., Ezeugwu, V. E., Cooper, L., McKeen, B., & Gross, D. P. (2025) · Frontiers in Health Services · doi:10.3389/frhs.2025.1589643 · Cited by 2 · see citing works
How auditory processing influences the autistic profile - a reviewPreprint
Poulsen, R. E., Williams, Z. J., Dwyer, P. S. R., Pellicano, E., Sowman, P. F., & McAlpine, D. (2024) · doi:10.31234/osf.io/a7kr5 · Cited by 2 · see citing works
Newton, C., Hudry, K., Aulich, A., Bent, C. A., Constantine, C., Franks, K., Goonetilleke, N., Green, C. C., Ijaz, R., Ma, E., et al. (2025) · Research in Autism · doi:10.1016/j.reia.2025.202655 · Cited by 1 · see citing works
Jenks, E., Selman, F., Harmens, M., Graham, R., Boon, S., Tran, T., Hobson, H., Eagle, S., & Sedgewick, F. (2025) · Journal of Participatory Research Methods · doi:10.35844/001c.137307 · Cited by 1 · see citing works
Weiss, J. A., Modica, P. T., Gallant, C., Roudbarani, F., Weaver, C., Bouma, A., Goldsmith, L., Leef, J., & Lunsky, Y. (2025) · Health Research Policy and Systems · doi:10.1186/s12961-025-01403-y · Cited by 1 · see citing works
Self-citationHepburn, S. (2024) · International review of research in developmental disabilities · doi:10.1016/bs.irrdd.2024.09.010
Andreassen, K., Smith, C. A., McKenzie, B., & Chen, J. (2025) · Sexual & Relationship Therapy · doi:10.1080/14681994.2025.2610433
- Authors
- Jose, C., George-Zwicker, P., Tardif, L., Bouma, A., Pugsley, D., Pugsley, L., Bélanger, M., Gaudet, J., & Robichaud, M.
- Affiliations
- Université de Moncton (CA)
- Université de Sherbrooke (CA)
- Corresponding author
- Robichaud, Marc
- Venue
- Research Involvement and Engagement
- Published
- 2020-09-27
- Volume
- 6
- Issue
- 1
- Pages
- 58-58
- ISSN
- 2056-7529 (ISSN-L)
- PMC
- PMC7520966
- OpenAlex
- W3089139100
- Cited by
- 22
- References
- 45
- Citations by year
- 2025: 6 · 2024: 7 · 2023: 3 · 2022: 3 · 2021: 3
- FWCI
- 2.35
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Locations
- Research Involvement and Engagement (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Funders
- Maritime SPOR SUPPORT Unit
- Consortium national de formation en santé
- Topics
- Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
- Health Sciences › Health Professions › General Health Professions › Community Health and Development
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Keywords
- autistic adults, co-research, patient and public involvement, multi-stakeholder collaboration, CONNECT project, caregiver involvement
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review
