Self- and Caregiver-Reported Choice-Making in Autistic Adults: Development and Validation of the AASPIRE–Choices and Decisions Scale

Metadata sources used for this reference

OpenAlex Crossref
Learn more about the sources used

Kim, S. Y., Gillespie-Lynch, K., Kapp, S. K., Yang, L. Q., Wallington, A., Raymaker, D. M., Moura, I., McDonald, K., Maslak, J., Kripke-Ludwig, R., Joyce, A., Horner-Johnson, W., Frowner, E., Baker-Ericzén, M., & Nicolaidis, C. (2026). Self- and Caregiver-Reported Choice-Making in Autistic Adults: Development and Validation of the AASPIRE–Choices and Decisions Scale [Preprint]. openRxiv. https://doi.org/10.64898/2026.05.07.26352693

Publication date: 10 May 2026 Added to AutiHub: 6 Jul 2026 Type: Preprint Article language: English
OpenAlex source Publisher source (DOI)

This publication is integrated into AutiHub through:

Authors

Publication authors
15
Publication authors identified as autistic
3 / 15 (20.0%)
  1. So Yoon Kim
  2. Kristen Gillespie-Lynch
  3. Steven K. Kapp *
  4. Liu-Qin Yang
  5. Anna Wallington
  1. Dora M Raymaker *
  2. Ian Moura
  3. Katherine McDonald
  4. Joelle Maslak *
  5. Rachel Kripke-Ludwig
  1. Andrea Joyce
  2. Willi Horner-Johnson
  3. Emanuel Frowner
  4. Mary Baker-Ericzén
  5. Christina Nicolaidis

Abstract

Self-determination has been assessed as an internal psychological construct. External factors may also affect self-determination, but opportunities to make choices and decisions remain understudied. We developed and evaluated the AASPIRE-Choices and Decisions Scale (AASPIRE-CDS), a new measure of autistic adults' opportunities to make choices and decisions, using a community-based participatory approach. We created and refined the AASPIRE-CDS through an iterative process. Data, from the AASPIRE Outcomes Project, included 839 autistic adults participating through direct report, supported direct report, and caregiver report (CR). Exploratory and confirmatory analyses supported a unidimensional structure. Measurement invariance analyses supported configural, metric, and partial scalar invariance across report type without CR, and across living status, with and without CR. The AASPIRE-CDS showed high internal consistency, test-retest reliability, and responsiveness to change over time. Convergent validity analyses showed that higher AASPIRE-CDS scores were associated with greater self-determination and communication fluency, more independent living, and fewer support needs. The AASPIRE-CDS showed weaker (albeit significant) associations with quality of life, overall health, and employment satisfaction than the self-determination measure showed with these variables. This pattern suggests that opportunities for choice-making are related to, but distinct from, commonly used measures of self-determination. Findings support the AASPIRE-CDS as a valid and reliable measure of choice-making opportunities in autistic adults across support needs but suggest caution interpreting CR. They underscore the importance of supporting autistic adults' choice-making and evaluating opportunities for choice alongside internal self-determination. Future research should use larger CR samples to examine the validity of caregiver-reported choice-making opportunities.

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 11:31.

Cited references
61
Total cited references integrated for this publication.
Cited references with an identified autistic author
11 / 61 (18.0%)
Cited author occurrences identified as autistic
26 / 231 (11.3%)
Among occurrences linked to AutiHub author records: 26 / 120 (21.7%). Distinct cited authors identified as autistic: 14 / 178 (7.9%).
Cited author occurrences linked to AutiHub author records
120 / 231 (51.9%)
Distinct linked cited authors: 79 / 178 (44.4%)
Linked cited-author occurrences not identified as autistic
94 / 120 (78.3%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 94 / 231 (40.7%). Distinct linked cited authors not identified as autistic: 65 / 79 (82.3%).
  1. Chung-Ying Lin , Wei-Ming Luh , Chung-Ping Cheng , Ai-Lun Yang , Chia-Ting Su , Hui-Ing Ma (2013). Measurement Equivalence across Child Self-Reports and Parent-Proxy Reports in the Chinese Version of the Pediatric Quality of Life Inventory Version 4.0 . Child Psychiatry & Human Development, 44(5), 583-590. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10578-012-0352-8 OpenAlex: https://openalex.org/W1990661420
    Crossref OpenAlex
  3. Susan Neely-Barnes , Maureen Marcenko , Lisa Weber (2008). Does Choice Influence Quality of Life for People With Mild Intellectual Disabilities? Intellectual and Developmental Disabilities, 46(1), 12-26. Informa UK Limited.
    Type: Article DOI: 10.1352/0047-6765(2008)46[12:dciqol]2.0.co;2 OpenAlex: https://openalex.org/W1994438332
    Crossref OpenAlex
  4. Tihomir Asparouhov , Bengt Muthén (2014). Multiple-Group Factor Analysis Alignment . Structural Equation Modeling: A Multidisciplinary Journal, 21(4), 495-508. Informa UK Limited.
    Type: Article DOI: 10.1080/10705511.2014.919210 OpenAlex: https://openalex.org/W2165202100
    Crossref OpenAlex
  5. Valery Chirkov , Richard M. Ryan , Youngmee Kim , Ulas Kaplan (2003). Differentiating autonomy from individualism and independence: A self-determination theory perspective on internalization of cultural orientations and well-being. Journal of Personality and Social Psychology, 84(1), 97-110. American Psychological Association (APA).
    Type: Article DOI: 10.1037/0022-3514.84.1.97 OpenAlex: https://openalex.org/W2026124877
    Crossref OpenAlex
  6. Brown, T. A. (2015). Confirmatory Factor Analysis for Applied Research (2nd ed.). New York, NY: Guilford.
    Type: Other
    Crossref
  7. Renáta Tichá , K. Charlie Lakin , Sheryl A. Larson , Roger J. Stancliffe , Sarah Taub , Joshua Engler et al. (2012). Correlates of Everyday Choice and Support-Related Choice for 8,892 Randomly Sampled Adults with Intellectual and Developmental Disabilities in 19 States . Intellectual and Developmental Disabilities, 50(6), 486-504. Informa UK Limited.
    Type: Article DOI: 10.1352/1934-9556-50.06.486 OpenAlex: https://openalex.org/W2050246407
    Crossref OpenAlex
  8. Ivan Brown , Roy I. Brown (2009). Choice as an Aspect of Quality of Life for People With Intellectual Disabilities . Journal of Policy and Practice in Intellectual Disabilities, 6(1), 11-18. Wiley.
    Type: Article DOI: 10.1111/j.1741-1130.2008.00198.x OpenAlex: https://openalex.org/W2053573041
    Crossref OpenAlex
  9. Barbara M. Byrne , Richard J. Shavelson , Bengt Muthén (1989). Testing for the equivalence of factor covariance and mean structures: The issue of partial measurement invariance. Psychological Bulletin, 105(3), 456-466. American Psychological Association (APA).
    Type: Article DOI: 10.1037//0033-2909.105.3.456 OpenAlex: https://openalex.org/W4240094537
    Crossref OpenAlex
  10. Kenneth O. McGraw , S. P. Wong (1996). Forming inferences about some intraclass correlation coefficients. Psychological Methods, 1(1), 30-46. American Psychological Association (APA).
    Type: Article DOI: 10.1037/1082-989x.1.1.30 OpenAlex: https://openalex.org/W2067724039
    Crossref OpenAlex
  11. Nancy Cheak‐Zamora , Andrew Tait , Ann Coleman (2022). Assessing and Promoting Independence in Young Adults with Autism Spectrum Disorder . Journal of Developmental & Behavioral Pediatrics, 43(3), 130-139. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/dbp.0000000000001021 OpenAlex: https://openalex.org/W3205157466
    Crossref OpenAlex
  12. Roger J. Stancliffe , Trevor R. Parmenter (1999). The Choice Questionnaire: A scale to assess choices exercised by adults with intellectual disability . Journal of Intellectual & Developmental Disability, 24(2), 107-132. Informa UK Limited.
    Type: Article DOI: 10.1080/13668259900033911 OpenAlex: https://openalex.org/W2069799708
    Crossref OpenAlex
  13. Gordon W. Cheung , Roger B. Rensvold (2002). Evaluating Goodness-of-Fit Indexes for Testing Measurement Invariance . Structural Equation Modeling: A Multidisciplinary Journal, 9(2), 233-255. Informa UK Limited.
    Type: Article DOI: 10.1207/s15328007sem0902_5 OpenAlex: https://openalex.org/W2089871805
    Crossref OpenAlex
  14. Robert J. Vandenberg , Charles E. Lance (2000). A Review and Synthesis of the Measurement Invariance Literature: Suggestions, Practices, and Recommendations for Organizational Research . Organizational Research Methods, 3(1), 4-70. SAGE Publications.
    Type: Article DOI: 10.1177/109442810031002 OpenAlex: https://openalex.org/W2130653485
    Crossref OpenAlex
  15. 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.
    Type: Article DOI: 10.1177/1088357615625059 OpenAlex: https://openalex.org/W2235581622
    Crossref OpenAlex
  16. Patrick E. Shrout , Joseph L. Fleiss (1979). Intraclass correlations: Uses in assessing rater reliability. Psychological Bulletin, 86(2), 420-428. American Psychological Association (APA).
    Type: Article DOI: 10.1037/0033-2909.86.2.420 OpenAlex: https://openalex.org/W2141403362
    Crossref OpenAlex
  17. Emily F. Ferguson , Elaine B. Clarke , Noa Schisterman , Catherine Lord (2025). Family experiences with supplemental social security income and legal guardianship for autistic adults: A mixed-methods study . Research in Autism Spectrum Disorders, 119, 102522. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2024.102522 OpenAlex: https://openalex.org/W4404756252
    Crossref OpenAlex
  18. Agnes Kozma , Jim Mansell , Julie Beadle-Brown (2009). Outcomes in Different Residential Settings for People With Intellectual Disability: A Systematic Review . American Journal on Intellectual and Developmental Disabilities, 114(3), 193-222. Informa UK Limited.
    Type: Article DOI: 10.1352/1944-7558-114.3.193 OpenAlex: https://openalex.org/W2145193855
    Crossref OpenAlex
  19. Teresa Girolamo , Marissa Birmingham , Karina Patel , Samantha Ghali , Iván Campos , Kyle Greene-Pendelton et al. (2024). Self-determination in minoritized autistic adolescents and adults . medRxiv. openRxiv.
    Type: Preprint DOI: 10.1101/2024.05.02.24306799 OpenAlex: https://openalex.org/W4396639871
    Crossref OpenAlex
  20. Human Services Research Institute & National Association of State Directors of Developmental Disabilities Services. (2025). National Core Indicators–Intellectual and Developmental Disabilities (NCI-IDD) national report 2023–24: Choice and decision making. https://idd.nationalcoreindicators.org/wp-content/uploads/2025/06/IPS-23-24-Ch04-Choice_FINAL.pdf
    Type: Other
    Crossref
  21. Jennifer L. Jones , Karrie A. Shogren , Elizabeth M. Grandfield , Kacey L. Vierling , Kami L. Gallus , Leslie A. Shaw (2018). Examining Predictors of Self-Determination in Adults with Intellectual and Developmental Disabilities . Journal of Developmental and Physical Disabilities, 30(5), 601-614. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10882-018-9607-z OpenAlex: https://openalex.org/W2807026100
    Crossref OpenAlex
  22. Herbert W. Marsh , Jiesi Guo , Philip D. Parker , Benjamin Nagengast , Tihomir Asparouhov , Bengt Muthén et al. (2018). What to do when scalar invariance fails: The extended alignment method for multi-group factor analysis comparison of latent means across many groups. Psychological Methods, 23(3), 524-545. American Psychological Association (APA).
    Type: Article DOI: 10.1037/met0000113 OpenAlex: https://openalex.org/W2574643688
    Crossref OpenAlex
  25. Karrie A. Shogren , Leslie A. Shaw , Sheida K. Raley , Michael L. Wehmeyer (2018). Exploring the Effect of Disability, Race-Ethnicity, and Socioeconomic Status on Scores on the Self-Determination Inventory: Student Report . Exceptional Children, 85(1), 10-27. SAGE Publications.
    Type: Article DOI: 10.1177/0014402918782150 OpenAlex: https://openalex.org/W2885104748
    Crossref OpenAlex
  26. (2019). The importance of adolescent self-report in autism spectrum disorder: Integration of questionnaire and autonomic measures . Journal of Abnormal Child Psychology, 47(5), 741.
    Type: Other
    Crossref
  27. So Yoon Kim (2019). The experiences of adults with autism spectrum disorder: Self-determination and quality of life . Research in Autism Spectrum Disorders, 60, 1-15. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2018.12.002 OpenAlex: https://openalex.org/W2910526802
    Crossref OpenAlex
  28. Karrie A. Shogren , Mark H. Anderson , Sheida K. Raley , Mayumi Hagiwara (2021). Exploring the Relationship between Student and Teacher/Proxy-Respondent Scores on the Self-Determination Inventory . Exceptionality, 29(1), 47-60. Informa UK Limited.
    Type: Article DOI: 10.1080/09362835.2020.1729764 OpenAlex: https://openalex.org/W3007919178
    Crossref OpenAlex
  29. So Yoon Kim , Jeong Eun Cheon , Young-Hoon Kim (2025). A Cross-Cultural Examination of Blatant and Subtle Dehumanization of Autistic People . Journal of Autism and Developmental Disorders, 55(2), 678-694. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-023-06217-x OpenAlex: https://openalex.org/W4390840976
    Crossref OpenAlex
  31. (1988). Daily decision-making in community residences: A social comparison of adults with and without mental retardation . American Journal on Mental Retardation, 92(5), 430.
    Type: Other
    Crossref
  32. Roger J. Stancliffe (2020). Choice Availability and People with Intellectual Disability . In Choice, Preference, and Disability (pp. 3-26). Springer International Publishing.
    Type: Book chapter DOI: 10.1007/978-3-030-35683-5_1 OpenAlex: https://openalex.org/W3017128749
    Crossref OpenAlex
  33. Katherine McDonald , Micah Fialka-Feldman , Alison Barkoff , Molly Burgdorf (2021). Legal, ethical, and social issues affecting the lives of people with intellectual and developmental disabilities. In APA handbook of intellectual and developmental disabilities: Foundations (Vol. 1). (pp. 47-69). American Psychological Association.
    Type: Book chapter DOI: 10.1037/0000194-003 OpenAlex: https://openalex.org/W3118206288
    Crossref OpenAlex
  34. Daniela Moza , Smaranda Ioana Lawrie , Laurențiu P. Maricuțoiu , Alin Gavreliuc , Heejung S. Kim (2021). Not All Forms of Independence Are Created Equal: Only Being Independent the “Right Way” Is Associated With Self-Esteem and Life Satisfaction . Frontiers in Psychology, 11, 606354. Frontiers Media SA.
    Type: Article DOI: 10.3389/fpsyg.2020.606354 OpenAlex: https://openalex.org/W3123531300
    Crossref OpenAlex
  35. Sarah Lineberry , Michael D. Broda , Parthenia Dinora , Matthew Bogenschutz , Seb Prohn , Angela West (2025). Evaluating Measurement Invariance Over Time for a Personal Opportunities Scale for People With IDD: Implications for Policy and Practice . Intellectual and Developmental Disabilities, 63(4), 315-328. Informa UK Limited.
    Type: Article DOI: 10.1352/1934-9556-63.4.315 OpenAlex: https://openalex.org/W4413112010
    Crossref OpenAlex
  36. Brianne Tomaszewski , Laura G. Klinger , Cara E. Pugliese (2022). Self-Determination in Autistic Transition-Aged Youth without Intellectual Disability . Journal of Autism and Developmental Disorders, 52(9), 4067-4078. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-021-05280-6 OpenAlex: https://openalex.org/W3201474346
    Crossref OpenAlex
  37. Little, T. D. (2013). Longitudinal Structural Equation Modeling. New York, NY: Guilford Press.
    Type: Other
    Crossref
  38. (2022). Understanding patient and caregiver perspectives using a dyad approach: a literature review . Patient Experience Journal, 9(2), 72.
    Type: Other
    Crossref
  39. Michael L. Wehmeyer (2021). Decision Making and Self-Determination . In Decision Making by Individuals with Intellectual and Developmental Disabilities (pp. 3-20). Springer International Publishing.
    Type: Book chapter DOI: 10.1007/978-3-030-74675-9_1 OpenAlex: https://openalex.org/W3217179059
    Crossref OpenAlex
  40. Michael L. Wehmeyer (2011). Arc's Self Determination Scale . PsycTESTS Dataset. American Psychological Association (APA).
    Type: Dataset DOI: 10.1037/t03340-000 OpenAlex: https://openalex.org/W4231036350
    Crossref OpenAlex
  41. Debjani Mukherjee (2022). Editor's Introduction: Disability, Social Justice, and Dignity of Risk at 50 Years . Perspectives in Biology and Medicine, 65(2), 157-161. Project MUSE.
    Type: Article DOI: 10.1353/pbm.2022.0010 OpenAlex: https://openalex.org/W4290374838
    Crossref OpenAlex
  42. (2015). Impact of choice on social outcomes of adults with ASD . Journal of Autism and Developmental Disorders, 45(5), 1588.
    Type: Other
    Crossref
  43. Carly Moser , Meghan M. Burke , Leann Smith DaWalt , Julie Lounds Taylor (2025). The Role of Parent Advocacy in Autistic Youths’ Self-Determination . American Journal on Intellectual and Developmental Disabilities, 130(2), 116-130. Informa UK Limited.
    Type: Article DOI: 10.1352/1944-7558-130.2.116 OpenAlex: https://openalex.org/W4407929575
    Crossref OpenAlex
  44. Tamar Taub , Shirli Werner (2023). Perspectives of adolescents with disabilities and their parents regarding autonomous decision-making and self-determination . Research in Developmental Disabilities, 136, 104442. Elsevier BV.
    Type: Article DOI: 10.1016/j.ridd.2023.104442 OpenAlex: https://openalex.org/W4322720826
    Crossref OpenAlex
  45. (2021). Self-determination of students with autism spectrum disorder: A systematic review . Journal of Developmental and Physical Disabilities, 33(6), 821.
    Type: Other
    Crossref
  50. Nicolaidis, C., Moura, I., Baker-Ericzen, M., Scharer, M., Maslak, J., Kripke-Ludwig, R., Horner-Johnson, W., Love, J., Raymaker, D. M., Joyce, A., des Roches Rosa, S., Herbert, G., Taylor, J., Yang, L., McDonald, K., Frowner, E., Smith, I., Wallington, A., Siddeek, Z., … Gardiner, F. (2025b). Measuring high-priority outcomes in a real-world sample of autistic adults: Cohort development, data collection, and sample description for the AASPIRE Outcomes Project [Preprint]. PsyArXiv. https://osf.io/4m3bf_v1 .
    Type: Other
    Crossref
  52. (n.d.). Rayl K., Herr P. L., Eddy B., Donaldson A., Fuller S., Zisk A. (2024, May 8). Exploring speech experiences, CPIB scores, and AAC assessment experiences of autistic AAC users with intermittent, unreliable, insufficient, and/or expensive speech [Poster presentation]. Student Research Symposium (Vol. 29), Portland, OR, United States.
    Type: Other
    Crossref
  53. Ryan, R. M., & Deci, E. L. (2002). Overview of self-determination theory: An organismic-dialectical perspective. In E. L. Deci & R. M. Ryan (Eds.), Handbook of Self-Determination Research (pp. 3–33). University of Rochester Press.
    Type: Other
    Crossref
  55. Olivia F. Ward , Justine Brennan , Theodore S. Tomeny (2025). A systematic review of multi-informant assessment approaches with autistic adults: Exploring autistic self-reporters and parent reporters . Research in Autism, 128, 202706. Elsevier BV.
    Type: Article DOI: 10.1016/j.reia.2025.202706 OpenAlex: https://openalex.org/W4414300573
    Crossref OpenAlex
  56. Casey Woodfield , Jennifer McIlvaine , Lisa Mihalich Quinn (2025). ‘The field was finally kind of level’: nonspeaking autistic students’ perspectives on foundational elements of inclusive virtual learning . International Journal of Inclusive Education, 1-21. Informa UK Limited.
    Type: Article DOI: 10.1080/13603116.2025.2581756 OpenAlex: https://openalex.org/W4415774541
    Crossref OpenAlex
  58. Wei Song , Jennifer Bromberg , Jessica E. Rast (2026). Choices and Control in Daily Life and Services Among Adults With Autism Using Services in the United States: The Role of Race and Ethnicity . American Journal on Intellectual and Developmental Disabilities, 131(1), 38-52. Informa UK Limited.
    Type: Article DOI: 10.1080/19447515.2025.2578150 OpenAlex: https://openalex.org/W7124160806
    Crossref OpenAlex
  59. United Nations. (2006). Convention on the Rights of Persons with Disabilities. United Nations. https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html
    Type: Other
    Crossref
  60. (1996). Essential characteristics of self-determined behavior of individuals with mental retardation . American Journal of Mental Retardation, 100(6), 632.
    Type: Other
    Crossref
  61. (1995). How self-determined are people with mental retardation? The National Consumer Survey . Mental Retardation, 33(2), 111.
    Type: Other
    Crossref