“Simultaneously Vague and Oddly Specific”: Understanding Autistic People's Experiences of Decision Making and Research Questionnaires

This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.

About the autistic author marker

Metadata sources used for this reference

OpenAlex Crossref OpenCitations
Learn more about the sources used

Stacey, R. & Cage, E. (2022). “Simultaneously Vague and Oddly Specific”: Understanding Autistic People's Experiences of Decision Making and Research Questionnaires. Autism in Adulthood, 5(3), 263-274. https://doi.org/10.1089/aut.2022.0039

Publication date: 30 Nov 2022 Added to AutiHub: 10 Sep 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
2
Publication authors identified as autistic
1 / 2 (50.0%)
  1. Rachael Stacey *
  2. Eilidh Cage

Abstract

Background: Autism researchers often use questionnaires to gather the views and experiences of autistic people. However, questionnaires may not always be designed in accessible ways. In addition, answering questions within a questionnaire involves decision making, which some autistic people have reported finding difficult. Therefore, this exploratory study aimed to enhance our understanding of autistic people's experiences of decision making, and to analyze their feedback on questionnaire measures to further understand decision making within the research context. Methods: One hundred seventeen participants completed an online questionnaire. In the questionnaire, they answered an open question about what affected their ability to make decisions. They then completed four questionnaire measures and after each one provided feedback. We used content analysis to categorize participants' qualitative answers. Results: Participants discussed how their internal state, other people, the quality and quantity of information, pressure on choosing a response, external distractions, and lack of time all affected their decision making. Feedback on the questionnaires highlighted how questions needed context, often questions themselves were unclear and difficult to understand, that there were issues with Likert scales, and how measures could have questionable validity for autistic people. Conclusions: Autism researchers need to consider how they can make their research as accessible as possible for autistic people. Our study highlights how decision making is not a straight-forward process, and researchers have a role in ensuring they give their participants clear and contextualized information. Involving autistic people in the design of research is a potential way of improving the quality of research.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 12 Sep 2026 07:09.

Cited references
43
With a DOI
41
Without a DOI, from raw bibliography text
2
6 / 43 (14.0%) cited references include at least one author identified as autistic.
References with data to complete
0 / 43 (0.0%)
References with detected author names
43 / 43 (100.0%)
Without detected author names
0
Without a structured title
0
Without a stable identifier
1
References with raw author names still to review
0
References with external metadata lookup issues
1
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
188
From DOI or external metadata
188
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
92 / 188 (48.9%) names are linked to an author already present in AutiHub. 96 / 188 (51.1%) names are not yet linked.
Names linked to a person identified as autistic
14 / 188 (7.4%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 14 / 92 (15.2%). Distinct people identified as autistic: 11 / 157 (7.0%).
  1. Lydia R. Luke (2011). Decision-Making in Autism Spectrum Conditions . Apollo (University of Cambridge). Apollo - University of Cambridge Repository.
    Type: Dissertation DOI: 10.17863/cam.16549 OpenAlex: https://openalex.org/W192421657
    Crossref OpenAlex
  2. Cameron A Maitland , Sinéad Rhodes , Anne O’Hare , Mary E. Stewart (2021). Social identities and mental well-being in autistic adults . Autism, 25(6), 1771-1783. SAGE Publications.
    Type: Article DOI: 10.1177/13623613211004328 OpenAlex: https://openalex.org/W3160089913
    Crossref OpenAlex OpenCitations
  4. Edward E. Smith , Stephen M. Kosslyn (2007). Cognitive Psychology: Mind and Brain . Cognitive Psychology: Mind and Brain.
    Type: Article OpenAlex: https://openalex.org/W1566789806
    Crossref OpenAlex
  5. Teresa Tavassoli , Rosa A. Hoekstra , Simon Baron-Cohen (2014). The Sensory Perception Quotient (SPQ): development and validation of a new sensory questionnaire for adults with and without autism . Molecular Autism, 5(1), 29. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/2040-2392-5-29 OpenAlex: https://openalex.org/W2137129675
    Crossref OpenAlex OpenCitations
  6. Eric Rassin , Peter Muris , Ingmar Franken , Maartje Smit , Maggie Wong (2007). Measuring General Indecisiveness . Journal of Psychopathology and Behavioral Assessment, 29(1), 60-67. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10862-006-9023-z OpenAlex: https://openalex.org/W1967932071
    Crossref OpenAlex OpenCitations
  7. Laura Hull , Will Mandy , Meng-Chuan Lai , Simon Baron-Cohen , Carrie Allison , Paula Smith et al. (2019). Development and Validation of the Camouflaging Autistic Traits Questionnaire (CAT-Q) . Journal of Autism and Developmental Disorders, 49(3), 819-833. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-018-3792-6 OpenAlex: https://openalex.org/W2898221520
    Crossref OpenAlex OpenCitations
  8. Mikle South , Paul D. Chamberlain , Sarah Wigham , Tiffani Newton , Ann Le Couteur , Helen McConachie et al. (2014). Enhanced decision making and risk avoidance in high-functioning autism spectrum disorder. Neuropsychology, 28(2), 222-228. American Psychological Association (APA).
    Type: Article DOI: 10.1037/neu0000016 OpenAlex: https://openalex.org/W2010609018
    Crossref OpenAlex OpenCitations
  10. Jordan Sibeoni , Laura Massoutier , Marie Valette , Emilie Manolios , Laurence Verneuil , Mario Speranza et al. (2022). The sensory experiences of autistic people: A metasynthesis . Autism, 26(5), 1032-1045. SAGE Publications.
    Type: Article DOI: 10.1177/13623613221081188 OpenAlex: https://openalex.org/W4220735801
    Crossref OpenAlex OpenCitations
  11. Robert L. Spitzer , Kurt Kroenke , Janet B. W. Williams , Bernd Löwe (2006). A Brief Measure for Assessing Generalized Anxiety Disorder . Archives of Internal Medicine, 166(10), 1092. American Medical Association (AMA).
    Type: Article DOI: 10.1001/archinte.166.10.1092 OpenAlex: https://openalex.org/W2043705607
    Crossref OpenAlex OpenCitations
  12. Carla A. Mazefsky , J. Kao , D.P. Oswald (2011). Preliminary evidence suggesting caution in the use of psychiatric self-report measures with adolescents with high-functioning autism spectrum disorders . Research in Autism Spectrum Disorders, 5(1), 164-174. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2010.03.006 OpenAlex: https://openalex.org/W2077644735
    Crossref OpenAlex OpenCitations
  13. Wendy E. Shaia , Helen M. Nichols , Sarah Dababnah , Karen Campion , Nicole Garbarino (2020). Brief Report: Participation of Black and African-American Families in Autism Research . Journal of Autism and Developmental Disorders, 50(5), 1841-1846. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-019-03926-0 OpenAlex: https://openalex.org/W2918103374
    Crossref OpenAlex OpenCitations
  14. Benedetto De Martino , Neil A. Harrison , Steven Knafo , Geoff Bird , Raymond J. Dolan (2008). Explaining Enhanced Logical Consistency during Decision Making in Autism . The Journal of Neuroscience, 28(42), 10746-10750. Society for Neuroscience.
    Type: Article DOI: 10.1523/jneurosci.2895-08.2008 OpenAlex: https://openalex.org/W2049167292
    Crossref OpenAlex OpenCitations
  15. Vermeulen P. (2014). The Practice of Promoting Happiness in Autism. Promoting Happiness and Wellbeing in Autism . The Practice of Promoting Happiness in Autism. Promoting Happiness and Wellbeing in Autism.
    Type: Other
    Crossref
  16. Lydia Vella , Howard A Ring , Mike RF Aitken , Peter C Watson , Alexander Presland , Isabel CH Clare (2018). Understanding self-reported difficulties in decision-making by people with autism spectrum disorders . Autism, 22(5), 549-559. SAGE Publications.
    Type: Article DOI: 10.1177/1362361316687988 OpenAlex: https://openalex.org/W2606888029
    Crossref OpenAlex OpenCitations
  18. Mikle South , Julianne Dana , Sarah E. White , Michael J. Crowley (2011). Failure is Not an Option: Risk-Taking is Moderated by Anxiety and Also by Cognitive Ability in Children and Adolescents Diagnosed with an Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 41(1), 55-65. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-010-1021-z OpenAlex: https://openalex.org/W2092832922
    Crossref OpenAlex OpenCitations
  19. Kaaren Haas , Debra Costley , Marita Falkmer , Amanda Richdale , Kate Sofronoff , Torbjörn Falkmer (2016). Factors Influencing the Research Participation of Adults with Autism Spectrum Disorders . Journal of Autism and Developmental Disorders, 46(5), 1793-1805. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-016-2708-6 OpenAlex: https://openalex.org/W2266267809
    Crossref OpenAlex OpenCitations
  20. David G. Amaral , Petrus J. de Vries (2020). COVID‐19 and Autism Research: Perspectives from Around the Globe . Autism Research, 13(6), 844-869. Wiley.
    Type: Article DOI: 10.1002/aur.2329 OpenAlex: https://openalex.org/W3037983895
    Crossref OpenAlex OpenCitations
  21. SHANNON A. JOHNSON , ELDAD YECHIAM , ROBIN R. MURPHY , SARAH QUELLER , JULIE C. STOUT (2006). Motivational processes and autonomic responsivity in Asperger's disorder: Evidence from the Iowa Gambling Task . Journal of the International Neuropsychological Society, 12(5), 668-676. Cambridge University Press (CUP).
    Type: Article DOI: 10.1017/s1355617706060802 OpenAlex: https://openalex.org/W2100440751
    Crossref OpenAlex OpenCitations
  22. Sarah Cassidy , L. Bradley , E. Bowen , Sarah Wigham , Jacqui Rodgers (2018). Measurement properties of tools used to assess suicidality in autistic and general population adults: A systematic review . Clinical Psychology Review, 62, 56-70. Elsevier BV.
    Type: Article DOI: 10.1016/j.cpr.2018.05.002 OpenAlex: https://openalex.org/W2800246475
    Crossref OpenAlex OpenCitations
  23. Jonna M Eriksson , Lisa MJ Andersen , Susanne Bejerot (2013). RAADS-14 Screen: validity of a screening tool for autism spectrum disorder in an adult psychiatric population . Molecular Autism, 4(1), 49. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/2040-2392-4-49 OpenAlex: https://openalex.org/W2106068095
    Crossref OpenAlex OpenCitations
  24. Sarah Cassidy , L. Bradley , E. Bowen , Sarah Wigham , Jacqui Rodgers (2018). Measurement properties of tools used to assess depression in adults with and without autism spectrum conditions: A systematic review . Autism Research, 11(5), 738-754. Wiley.
    Type: Article DOI: 10.1002/aur.1922 OpenAlex: https://openalex.org/W2783826777
    Crossref OpenAlex OpenCitations
  25. Randy O. Frost , Deanna L. Shows (1993). The nature and measurement of compulsive indecisiveness . Behaviour Research and Therapy, 31(7), 683-IN2. Elsevier BV.
    Type: Article DOI: 10.1016/0005-7967(93)90121-a OpenAlex: https://openalex.org/W2120348297
    Crossref OpenAlex OpenCitations
  26. Mirabel Pelton , Hayley Crawford , Ashley Robertson , Jacqui Rodgers , Simon Baron-Cohen , Sarah Cassidy (2020). A Measurement Invariance Analysis of the Interpersonal Needs Questionnaire and Acquired Capability for Suicide Scale in Autistic and Non-Autistic Adults . Autism in Adulthood, 2(3), 193-203. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2019.0055 OpenAlex: https://openalex.org/W3010926825
    Crossref OpenAlex OpenCitations
  27. Morton Ann Gernsbacher , Melanie Yergeau * (2019). Empirical failures of the claim that autistic people lack a theory of mind. Archives of Scientific Psychology, 7(1), 102-118. American Psychological Association (APA).
    Type: Article DOI: 10.1037/arc0000067 OpenAlex: https://openalex.org/W2994917579
    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
  28. Sarah Cassidy , Louise Bradley , Heather Cogger-Ward , Jacqui Rodgers (2021). Development and validation of the suicidal behaviours questionnaire - autism spectrum conditions in a community sample of autistic, possibly autistic and non-autistic adults . Molecular Autism, 12(1), 46. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s13229-021-00449-3 OpenAlex: https://openalex.org/W3167453398
    Crossref OpenAlex OpenCitations
  29. George D. Farmer , Simon Baron-Cohen , William J. Skylark (2017). People With Autism Spectrum Conditions Make More Consistent Decisions . Psychological Science, 28(8), 1067-1076. SAGE Publications.
    Type: Article DOI: 10.1177/0956797617694867 OpenAlex: https://openalex.org/W2604629758
    Crossref OpenAlex OpenCitations
  30. Sarah Cassidy , Louise Bradley , Heather Cogger-Ward , Jessica Graham , Jacqui Rodgers (2021). Development and Validation of the Autistic Depression Assessment Tool – Adult (ADAT-A) in Autistic Adults. Research Square. Springer Science and Business Media LLC.
    Type: Preprint DOI: 10.21203/rs.3.rs-358997/v1 OpenAlex: https://openalex.org/W3139598402
    Crossref OpenAlex OpenCitations
  31. Temple S. Lovelace , Mary P. Comis , JoVonne M. Tabb , Olajumoke E. Oshokoya (2022). Missing from the Narrative: A Seven-Decade Scoping Review of the Inclusion of Black Autistic Women and Girls in Autism Research . Behavior Analysis in Practice, 15(4), 1093-1105. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s40617-021-00654-9 OpenAlex: https://openalex.org/W3177117256
    Crossref OpenAlex OpenCitations
  32. Hsiu-Fang Hsieh , Sarah E. Shannon (2005). Three Approaches to Qualitative Content Analysis . Qualitative Health Research, 15(9), 1277-1288. SAGE Publications.
    Type: Article DOI: 10.1177/1049732305276687 OpenAlex: https://openalex.org/W2142225512
    Crossref OpenAlex OpenCitations
  33. Helen McConachie , David Mason , Jeremy R Parr , Deborah Garland , Colin Wilson , Jacqui Rodgers (2018). Enhancing the Validity of a Quality of Life Measure for Autistic People . Journal of Autism and Developmental Disorders, 48(5), 1596-1611. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3402-z OpenAlex: https://openalex.org/W2768942203
    Crossref OpenAlex OpenCitations
  34. Matthew Hollocks , Jian Wei Lerh , Iliana Magiati , Richard Meiser-Stedman , Traolach Brugha (2019). Anxiety and depression in adults with autism spectrum disorder: a systematic review and meta-analysis . Psychological Medicine, 49(4), 559-572. Cambridge University Press (CUP).
    Type: Article DOI: 10.1017/s0033291718002283 OpenAlex: https://openalex.org/W2889987209
    Crossref OpenAlex OpenCitations
  35. Lydia Luke , Isabel C.H. Clare , Howard Ring , Marcus Redley , Peter Watson (2012). Decision-making difficulties experienced by adults with autism spectrum conditions . Autism, 16(6), 612-621. SAGE Publications.
    Type: Article DOI: 10.1177/1362361311415876 OpenAlex: https://openalex.org/W2153940389
    Crossref OpenAlex OpenCitations
  36. Vikram K. Jaswal , Nameera Akhtar (2019). Being versus appearing socially uninterested: Challenging assumptions about social motivation in autism . Behavioral and Brain Sciences, 42, e82. Cambridge University Press (CUP).
    Type: Article DOI: 10.1017/s0140525x18001826 OpenAlex: https://openalex.org/W2809138493
    Crossref OpenAlex OpenCitations
  37. Mariette Bengtsson (2016). How to plan and perform a qualitative study using content analysis . NursingPlus Open, 2, 8-14. Elsevier BV.
    Type: Article DOI: 10.1016/j.npls.2016.01.001 OpenAlex: https://openalex.org/W2284386481
    Crossref OpenAlex OpenCitations
  38. Ye In (Jane) Hwang , Samuel R. C. Arnold , Preeyaporn Srasuebkul , Julian Trollor (2020). Understanding anxiety in adults on the autism spectrum: An investigation of its relationship with intolerance of uncertainty, sensory sensitivities and repetitive behaviours . Autism, 24(2), 411-422. SAGE Publications.
    Type: Article DOI: 10.1177/1362361319868907 OpenAlex: https://openalex.org/W2967348947
    Crossref OpenAlex OpenCitations
  40. Christen Erlingsson , Petra Brysiewicz (2017). A hands-on guide to doing content analysis . African Journal of Emergency Medicine, 7(3), 93-99. Elsevier BV.
    Type: Article DOI: 10.1016/j.afjem.2017.08.001 OpenAlex: https://openalex.org/W2748793112
    Crossref OpenAlex OpenCitations
  41. Desiree R. Jones , DAVID S. MANDELL (2020). To address racial disparities in autism research, we must think globally, act locally . Autism, 24(7), 1587-1589. SAGE Publications.
    Type: Article DOI: 10.1177/1362361320948313 OpenAlex: https://openalex.org/W3090890396
    Crossref OpenAlex OpenCitations
  43. Lydia Vella , Howard A Ring , Mike Rf Aitken , Peter C Watson , Alexander Presland , Isabel Ch Clare (2018). Understanding self-reported difficulties in decision-making by people with autism spectrum disorders. SAGE Publications.
    Type: Other DOI: 10.17863/cam.8317
    OpenCitations