Measurement matters: A commentary on the state of the science on patient reported outcome measures ( PROMs ) in autism research

Authors

Abstract

High quality science relies upon psychometrically valid and reliable measurement, yet very few Patient Reported Outcome Measures (PROMs) have been developed or thoroughly validated for use with autistic individuals. The present commentary summarizes the current state of autism PROM science, based on discussion at the Special Interest Group (SIG) at the 2022 International Society for Autism Research (INSAR) Annual Meeting and collective expertise of the authors. First, we identify current issues in autism PROM research including content and construct operationalization, informant-structure, measure accessibility, and measure validation and generalization. We then enumerate barriers to conducting and disseminating this research, such as a lack of guidance, concerns regarding funding and time, lack of accessible training and professionals with psychometric skills, difficulties collecting large representative samples, and challenges with dissemination. Lastly, we offer future priorities and resources to improve PROMs in autism research including a need to continue to evaluate and develop PROMs for autistic people using robust methods, to prioritize diverse and representative samples, to expand the breadth of psychometric properties and techniques, and to consider developing field specific guidelines. We remain extremely optimistic about the future directions of this area of autism research. This work is well positioned to have an immense, positive impact on our scientific understanding of autism and the everyday lives of autistic people and their families.

1. Eric K. H. Chan (2014). Standards and Guidelines for Validation Practices: Development and Evaluation of Measurement Instruments . In Social Indicators Research Series (pp. 9-24). Springer International Publishing.

   Type: Book chapter DOI: 10.1007/978-3-319-07794-9_2 OpenAlex: https://openalex.org/W136753908

   Crossref OpenAlex OpenCitations
2. Olof Arvidsson , Christopher Gillberg , Paul Lichtenstein , Sebastian Lundström (2018). Secular changes in the symptom level of clinically diagnosed autism . Journal of Child Psychology and Psychiatry, 59(7), 744-751. Wiley.

   Type: Article DOI: 10.1111/jcpp.12864 OpenAlex: https://openalex.org/W2790551111

   Crossref OpenAlex OpenCitations
3. Cecilia A. C. Prinsen , Sunita Vohra , Michael R. Rose , Maarten Boers , Peter Tugwell , Mike Clarke et al. (2016). How to select outcome measurement instruments for outcomes included in a “Core Outcome Set” – a practical guideline . Trials, 17(1), 449-449. Springer Science and Business Media LLC.

   Type: Article DOI: 10.1186/s13063-016-1555-2 OpenAlex: https://openalex.org/W2519102334

   Crossref OpenAlex OpenCitations
4. Azmeh Shahid , Kate Wilkinson , Shai Marcu , Colin M. Shapiro (2011). Beck Depression Inventory . In STOP, THAT and One Hundred Other Sleep Scales (pp. 63-64). Springer New York.

   Type: Book chapter DOI: 10.1007/978-1-4419-9893-4_8 OpenAlex: https://openalex.org/W1585453570

   OpenAlex
5. Vanessa Bal , Robert L. Hendren , Tony Charman , Leonard Abbeduto , Connie Kasari , Laura G. Klinger et al. (2018). Considerations from the 2017 IMFAR Preconference on Measuring Meaningful Outcomes from School‐Age to Adulthood . Autism Research, 11(11), 1446-1454. Wiley.

   Type: Article DOI: 10.1002/aur.2034 OpenAlex: https://openalex.org/W2898994767

   Crossref OpenAlex OpenCitations
6. Ru Ying Cai , Amanda L. Richdale , Mirko Uljarević , Cheryl Dissanayake , Andrea C. Samson (2018). Emotion regulation in autism spectrum disorder: Where we are and where we need to go . Autism Research, 11(7), 962-978. Wiley.

   Type: Article DOI: 10.1002/aur.1968 OpenAlex: https://openalex.org/W2839700533

   Crossref OpenAlex OpenCitations
7. Vanessa Hus , Somer Bishop , Katherine Gotham , Marisela Huerta , Catherine Lord (2013). Factors influencing scores on the social responsiveness scale . Journal of Child Psychology and Psychiatry, 54(2), 216-224. Wiley.

   Type: Article DOI: 10.1111/j.1469-7610.2012.02589.x OpenAlex: https://openalex.org/W1881457160

   Crossref OpenAlex OpenCitations
8. Beck A. T. (1996). Beck depression inventory . Beck depression inventory.

   Type: Other

   Crossref
9. Eiko I. Fried , Jessica K. Flake , Donald J. Robinaugh (2022). Revisiting the theoretical and methodological foundations of depression measurement . Nature Reviews Psychology, 1(6), 358-368. Springer Science and Business Media LLC.

   Type: Article DOI: 10.1038/s44159-022-00050-2 OpenAlex: https://openalex.org/W4223964620

   Crossref OpenAlex OpenCitations
10. Noah J. Sasson , Daniel J. Faso , Morgan Parlier , Julie L. Daniels , Joseph Piven (2014). When Father Doesn't Know Best: Selective Disagreement Between Self‐Report and Informant Report of the Broad Autism Phenotype in Parents of a Child with Autism . Autism Research, 7(6), 731-739. Wiley.

    Type: Article DOI: 10.1002/aur.1425 OpenAlex: https://openalex.org/W1928650762

    Crossref OpenAlex OpenCitations
11. Robert F. DeVellis (2006). Classical Test Theory . Medical Care, 44(Suppl 3), S50-S59. Ovid Technologies (Wolters Kluwer Health).

    Type: Article DOI: 10.1097/01.mlr.0000245426.10853.30 OpenAlex: https://openalex.org/W2084605636

    Crossref OpenAlex OpenCitations
12. Dan Hall , Michael F. Huerta , Matthew J. McAuliffe , Gregory K. Farber (2012). Sharing Heterogeneous Data: The National Database for Autism Research . Neuroinformatics, 10(4), 331-339. Springer Science and Business Media LLC.

    Type: Article DOI: 10.1007/s12021-012-9151-4 OpenAlex: https://openalex.org/W1979070592

    Crossref OpenAlex OpenCitations
13. 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
14. Zachary J. Williams *Autistic author. Learn more… , Jonas Everaert , Katherine Gotham (2021). Measuring Depression in Autistic Adults: Psychometric Validation of the Beck Depression Inventory–II . Assessment, 28(3), 858-876. SAGE Publications.

    Type: Article DOI: 10.1177/1073191120952889 OpenAlex: https://openalex.org/W3082072280

    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
15. Jennifer Petrillo , Stefan J. Cano , Lori D. McLeod , Cheryl D. Coon (2015). Using Classical Test Theory, Item Response Theory, and Rasch Measurement Theory to Evaluate Patient-Reported Outcome Measures: A Comparison of Worked Examples . Value in Health, 18(1), 25-34. Elsevier BV.

    Type: Article DOI: 10.1016/j.jval.2014.10.005 OpenAlex: https://openalex.org/W1983566659

    Crossref OpenAlex OpenCitations
16. David Cella , Elizabeth A. Hahn , Sally E. Jensen , Zeeshan Butt , Cindy J. Nowinski , Nan Rothrock et al. (2015). Patient-Reported Outcomes in Performance Measurement .

    Type: Book OpenAlex: https://openalex.org/W2485441270

    Crossref OpenAlex
17. THEODORE KUNIN (1955). The Construction of a New Type of Attitude Measure 1 . Personnel Psychology, 8(1), 65-77. Wiley.

    Type: Article DOI: 10.1111/j.1744-6570.1955.tb01189.x OpenAlex: https://openalex.org/W1996333894

    Crossref OpenAlex OpenCitations
18. Lidwine B. Mokkink , Caroline B. Terwee , Donald L. Patrick , Jordi Alonso , Paul W. Stratford , Dirk L. Knol et al. (2010). The COSMIN study reached international consensus on taxonomy, terminology, and definitions of measurement properties for health-related patient-reported outcomes . Journal of Clinical Epidemiology, 63(7), 737-745. Elsevier BV.

    Type: Article DOI: 10.1016/j.jclinepi.2010.02.006 OpenAlex: https://openalex.org/W2171762906

    Crossref OpenAlex OpenCitations
19. Carla A. Mazefsky , John Herrington , Matthew Siegel , Angela Scarpa , Brenna B. Maddox , Lawrence Scahill et al. (2013). The Role of Emotion Regulation in Autism Spectrum Disorder . Journal of the American Academy of Child & Adolescent Psychiatry, 52(7), 679-688. Elsevier BV.

    Type: Article DOI: 10.1016/j.jaac.2013.05.006 OpenAlex: https://openalex.org/W2033011309

    Crossref OpenAlex OpenCitations
20. Bernard C K Choi , Anita W P Pak (2005). A catalog of biases in questionnaires. Preventing chronic disease, 2(1), A13-A13.

    Type: Article OpenAlex: https://openalex.org/W2142018618

    Crossref OpenAlex
21. Jacqui Rodgers , Sarah Wigham , Helen McConachie , Mark Freeston , Emma Honey , Jeremy R. Parr (2016). Development of the anxiety scale for children with autism spectrum disorder (ASC‐ASD) . Autism Research, 9(11), 1205-1215. Wiley.

    Type: Article DOI: 10.1002/aur.1603 OpenAlex: https://openalex.org/W2279437985

    Crossref OpenAlex OpenCitations
22. 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 OpenCitations
23. Clark L. A. (2019). Psychological assessment . Psychological assessment, 1412.

    Type: Other

    Crossref
24. Sophie Cleanthous , Skye Pamela Barbic , Sarah Smith , Antoine Regnault (2019). Psychometric performance of the PROMIS® depression item bank: a comparison of the 28- and 51-item versions using Rasch measurement theory . Journal of Patient-Reported Outcomes, 3(1), 47-47. Springer Science and Business Media LLC.

    Type: Article DOI: 10.1186/s41687-019-0131-4 OpenAlex: https://openalex.org/W2966096503

    Crossref OpenAlex OpenCitations
25. Lawrence Scahill , Luc Lecavalier , Robert T. Schultz , Andrea Nichole Evans , Brenna B. Maddox , Jill Pritchett et al. (2019). Development of the Parent-Rated Anxiety Scale for Youth With Autism Spectrum Disorder . Journal of the American Academy of Child & Adolescent Psychiatry, 58(9), 887-896.e2. Elsevier BV.

    Type: Article DOI: 10.1016/j.jaac.2018.10.016 OpenAlex: https://openalex.org/W2917465662

    Crossref OpenAlex OpenCitations
26. Michelle K. Demaray , Christine K. Malecki , Stephanie M. Secord , Kelly M. Lyell (2013). Agreement among students', teachers', and parents' perceptions of victimization by bullying . Children and Youth Services Review, 35(12), 2091-2100. Elsevier BV.

    Type: Article DOI: 10.1016/j.childyouth.2013.10.018 OpenAlex: https://openalex.org/W2088354157

    Crossref OpenAlex OpenCitations
27. Julia Cook , Laura Hull , Laura Crane , Will Mandy (2021). Camouflaging in autism: A systematic review . Clinical Psychology Review, 89, 102080. Elsevier BV.

    Type: Article DOI: 10.1016/j.cpr.2021.102080 OpenAlex: https://openalex.org/W3198172085

    Crossref OpenAlex OpenCitations
28. Sonya L. Eremenco , David Cella , Benjamin J. Arnold (2005). A Comprehensive Method for the Translation and Cross-Cultural Validation of Health Status Questionnaires . Evaluation & the Health Professions, 28(2), 212-232. SAGE Publications.

    Type: Article DOI: 10.1177/0163278705275342 OpenAlex: https://openalex.org/W2104225127

    Crossref OpenAlex OpenCitations
29. Andres De Los Reyes (2011). Introduction to the Special Section: More Than Measurement Error: Discovering Meaning Behind Informant Discrepancies in Clinical Assessments of Children and Adolescents . Journal of Clinical Child & Adolescent Psychology, 40(1), 1-9. Informa UK Limited.

    Type: Article DOI: 10.1080/15374416.2011.533405 OpenAlex: https://openalex.org/W2157039680

    Crossref OpenAlex OpenCitations
30. Allison B. Ratto , Julia Bascom *Autistic author. Learn more… , Sharon daVanport *Autistic author. Learn more… , John F. Strang , Laura G. Anthony , Alyssa Verbalis et al. (2023). Centering the Inner Experience of Autism: Development of the Self-Assessment of Autistic Traits . Autism in Adulthood, 5(1), 93-105. SAGE Publications.

    Type: Article DOI: 10.1089/aut.2021.0099 OpenAlex: https://openalex.org/W4308024241

    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
31. Darren A. DeWalt , Nan Rothrock , Susan Yount , Arthur A. Stone (2007). Evaluation of Item Candidates . Medical Care, 45(5), S12-S21. Ovid Technologies (Wolters Kluwer Health).

    Type: Article DOI: 10.1097/01.mlr.0000254567.79743.e2 OpenAlex: https://openalex.org/W2130986983

    Crossref OpenAlex OpenCitations
32. Kristopher J. Preacher , Robert C. MacCallum (2003). Repairing Tom Swift's Electric Factor Analysis Machine . Understanding Statistics, 2(1), 13-43. Informa UK Limited.

    Type: Article DOI: 10.1207/s15328031us0201_02 OpenAlex: https://openalex.org/W2139285440

    Crossref OpenAlex OpenCitations
33. Sara Taylor , Brielle N. Gehringer , Holly C. Dow , Allison Langer , Eric Rawot , Zoe Smernoff et al. (2024). Contrasting Views of Autism Spectrum Traits in Adults, Especially in Self-Reports vs. Informant-Reports for Women High in Autism Spectrum Traits . Journal of Autism and Developmental Disorders, 54(3), 1088-1100. Springer Science and Business Media LLC.

    Type: Article DOI: 10.1007/s10803-022-05822-6 OpenAlex: https://openalex.org/W4311291194

    Crossref OpenAlex OpenCitations
34. Lauren Harris , Daniel Gilmore , Anne Longo , Brittany N. Hand (2021). Short report: Patterns of US federal autism research funding during 2017–2019 . Autism, 25(7), 2135-2139. SAGE Publications.

    Type: Article DOI: 10.1177/13623613211003430 OpenAlex: https://openalex.org/W3138253050

    Crossref OpenAlex OpenCitations
35. Eya‐Mist Rødgaard , Kristian Jensen , Kamilla Woznica Miskowiak , Laurent Mottron (2022). Representativeness of autistic samples in studies recruiting through social media . Autism Research, 15(8), 1447-1456. Wiley.

    Type: Article DOI: 10.1002/aur.2777 OpenAlex: https://openalex.org/W4284991023

    Crossref OpenAlex OpenCitations
36. Pamela Feliciano , Amy M. Daniels , LeeAnne Green Snyder , Amy Beaumont , Alexies Camba , Amy Esler et al. (2018). SPARK: A US Cohort of 50,000 Families to Accelerate Autism Research . Neuron, 97(3), 488-493. Elsevier BV.

    Type: Article DOI: 10.1016/j.neuron.2018.01.015 OpenAlex: https://openalex.org/W2785900161

    Crossref OpenAlex OpenCitations
37. Esther Ulitzsch , Oliver Lüdtke , Alexander Robitzsch (2023). Alleviating estimation problems in small sample structural equation modeling—A comparison of constrained maximum likelihood, Bayesian estimation, and fixed reliability approaches. Psychological Methods, 28(3), 527-557. American Psychological Association (APA).

    Type: Article DOI: 10.1037/met0000435 OpenAlex: https://openalex.org/W4200214621

    Crossref OpenAlex OpenCitations
38. Lidwine B. Mokkink , Cecilia A. C. Prinsen , Lex M. Bouter , Henrica C. W. de Vet , Caroline B. Terwee (2016). The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) and how to select an outcome measurement instrument . Brazilian Journal of Physical Therapy, 20(2), 105-113. FapUNIFESP (SciELO).

    Type: Article DOI: 10.1590/bjpt-rbf.2014.0143 OpenAlex: https://openalex.org/W2261381821

    Crossref OpenAlex OpenCitations
39. Rachel Fitzpatrick , Brian E. McGuire , Helena K. Lydon (2022). Improving pain‐related communication in children with autism spectrum disorder and intellectual disability . Paediatric and Neonatal Pain, 4(1), 22-32. Wiley.

    Type: Article DOI: 10.1002/pne2.12076 OpenAlex: https://openalex.org/W4214539485

    Crossref OpenAlex OpenCitations
40. Jessica M. Schwartzman , Zachary J. Williams *Autistic author. Learn more… , Ann V. Paterson , Alexandra X Jacobs , Blythe A. Corbett (2023). Community-guided measurement-based care for autistic youth and adults receiving psychotherapy: A conceptual overview and pilot implementation study of MBC-AUT . Autism, 27(6), 1658-1675. SAGE Publications.

    Type: Article DOI: 10.1177/13623613221143587 OpenAlex: https://openalex.org/W4315651645

    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
41. Jessica Kay Flake , Eiko I. Fried (2020). Measurement Schmeasurement: Questionable Measurement Practices and How to Avoid Them . Advances in Methods and Practices in Psychological Science, 3(4), 456-465. SAGE Publications.

    Type: Article DOI: 10.1177/2515245920952393 OpenAlex: https://openalex.org/W3108041100

    Crossref OpenAlex OpenCitations
42. Jacqui Rodgers , Kirstin Farquhar , David Mason , Samuel Brice , Sarah Wigham , Barry Ingham et al. (2020). Development and Initial Evaluation of the Anxiety Scale for Autism-Adults . Autism in Adulthood, 2(1), 24-33. SAGE Publications.

    Type: Article DOI: 10.1089/aut.2019.0044 OpenAlex: https://openalex.org/W3008810730

    Crossref OpenAlex OpenCitations
43. John C. Newman , Robin Feldman (2011). Copyright and Open Access at the Bedside . New England Journal of Medicine, 365(26), 2447-2449. Massachusetts Medical Society.

    Type: Article DOI: 10.1056/nejmp1110652 OpenAlex: https://openalex.org/W2321714691

    Crossref OpenAlex OpenCitations
44. Éric Fombonne (2020). Camouflage and autism . Journal of Child Psychology and Psychiatry, 61(7), 735-738. Wiley.

    Type: Article DOI: 10.1111/jcpp.13296 OpenAlex: https://openalex.org/W3043705882

    Crossref OpenAlex OpenCitations
45. Erin C McKiernan , Philip E Bourne , C Titus Brown , Stuart Buck , Amye Kenall , Jennifer Lin et al. (2016). How open science helps researchers succeed . eLife, 5. eLife Sciences Publications, Ltd.

    Type: Article DOI: 10.7554/elife.16800 OpenAlex: https://openalex.org/W2463568293

    Crossref OpenAlex OpenCitations
46. Thomas Frazier , Izma Khaliq , Keeley Scullin , Mirko Uljarević , Andy Shih , Arun Karpur (2023). Development and Psychometric Evaluation of the Open-Source Challenging Behavior Scale (OS-CBS) . Journal of Autism and Developmental Disorders, 53(12), 4655-4670. Springer Science and Business Media LLC.

    Type: Article DOI: 10.1007/s10803-022-05750-5 OpenAlex: https://openalex.org/W4296037443

    Crossref OpenAlex OpenCitations
47. Sanne C. Smid , Daniel McNeish , Milica Miočević , Rens van de Schoot (2020). Bayesian Versus Frequentist Estimation for Structural Equation Models in Small Sample Contexts: A Systematic Review . Structural Equation Modeling: A Multidisciplinary Journal, 27(1), 131-161. Informa UK Limited.

    Type: Article DOI: 10.1080/10705511.2019.1577140 OpenAlex: https://openalex.org/W2944958851

    Crossref OpenAlex OpenCitations
48. Joel J. Gagnier , Jianyu Lai , Lidwine B. Mokkink , Caroline B. Terwee (2021). COSMIN reporting guideline for studies on measurement properties of patient-reported outcome measures . Quality of Life Research, 30(8), 2197-2218. Springer Science and Business Media LLC.

    Type: Article DOI: 10.1007/s11136-021-02822-4 OpenAlex: https://openalex.org/W3140953248

    Crossref OpenAlex OpenCitations
49. Daniel McNeish (2018). Thanks coefficient alpha, we’ll take it from here. Psychological Methods, 23(3), 412-433. American Psychological Association (APA).

    Type: Article DOI: 10.1037/met0000144 OpenAlex: https://openalex.org/W2617619553

    Crossref OpenAlex OpenCitations
50. Carla A. Mazefsky , Carla A. Mazefsky , Taylor N. Day , Susan W. White , Susan W. White , Lan Yu et al. (2018). Development of the Emotion Dysregulation Inventory: A PROMIS®ing Method for Creating Sensitive and Unbiased Questionnaires for Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 48(11), 3736-3746. Springer Science and Business Media LLC.

    Type: Article DOI: 10.1007/s10803-016-2907-1 OpenAlex: https://openalex.org/W2528212113

    Crossref OpenAlex OpenCitations
51. Hudson Golino , Alexander P. Christensen , Luis Eduardo Garrido (2022). Exploratory Graph Analysis in context . Psicologia - Teoria e Prática, 24(3). GN1 Sistemas e Publicacoes Ltd..

    Type: Article DOI: 10.5935/1980-6906/eptpic15531.en OpenAlex: https://openalex.org/W4293688663

    Crossref OpenAlex OpenCitations
52. C. A. C. Prinsen , L. B. Mokkink , L. M. Bouter , J. Alonso , D. L. Patrick , H. C. W. de Vet et al. (2018). COSMIN guideline for systematic reviews of patient-reported outcome measures . Quality of Life Research, 27(5), 1147-1157. Springer Science and Business Media LLC.

    Type: Article DOI: 10.1007/s11136-018-1798-3 OpenAlex: https://openalex.org/W2793320726

    Crossref OpenAlex OpenCitations
53. David J. Hughes (2018). Psychometric Validity . In The Wiley Handbook of Psychometric Testing (pp. 751-779). Wiley.

    Type: Book chapter DOI: 10.1002/9781118489772.ch24 OpenAlex: https://openalex.org/W2605837417

    Crossref OpenAlex OpenCitations
54. Alexandra Sturm , Megan Kuhfeld , Connie Kasari , James T. McCracken (2017). Development and validation of an item response theory‐based Social Responsiveness Scale short form . Journal of Child Psychology and Psychiatry, 58(9), 1053-1061. Wiley.

    Type: Article DOI: 10.1111/jcpp.12731 OpenAlex: https://openalex.org/W2610546458

    Crossref OpenAlex OpenCitations
55. Benjamin Hannon , Will Mandy , Laura Hull (2023). A comparison of methods for measuring camouflaging in autism . Autism Research, 16(1), 12-29. Wiley.

    Type: Article DOI: 10.1002/aur.2850 OpenAlex: https://openalex.org/W4310081003

    Crossref OpenAlex OpenCitations
56. Tenko Raykov , George A. Marcoulides (2019). Thanks Coefficient Alpha, We Still Need You! Educational and Psychological Measurement, 79(1), 200-210. SAGE Publications.

    Type: Article DOI: 10.1177/0013164417725127 OpenAlex: https://openalex.org/W2752924132

    Crossref OpenAlex OpenCitations
57. Meng-Chuan Lai , Laura Hull , Will Mandy , Bhismadev Chakrabarti , Christine Wu Nordahl , Michael Lombardo et al. (2021). Commentary: ‘Camouflaging’ in autistic people – reflection on Fombonne (2020) . Journal of Child Psychology and Psychiatry, 62(8). Wiley.

    Type: Article DOI: 10.1111/jcpp.13344 OpenAlex: https://openalex.org/W3106886286

    Crossref OpenAlex OpenCitations
58. Iliana Magiati , Jian Wei Lerh , Matthew J. Hollocks , Mirko Uljarević , Jacqui Rodgers , Helen McConachie et al. (2017). The measurement properties of the spence children's anxiety scale‐parent version in a large international pooled sample of young people with autism spectrum disorder . Autism Research, 10(10), 1629-1652. Wiley.

    Type: Article DOI: 10.1002/aur.1809 OpenAlex: https://openalex.org/W2621143487

    Crossref OpenAlex OpenCitations
59. Clare Harrop , Aaron R. Dallman , Brian A. Boyd (2021). Big Data. Big Problem? Autism Research, 14(2), 238-239. Wiley.

    Type: Article DOI: 10.1002/aur.2465 OpenAlex: https://openalex.org/W3118323319

    Crossref OpenAlex OpenCitations
60. L. B. Mokkink , H. C. W. de Vet , C. A. C. Prinsen , D. L. Patrick , J. Alonso , L. M. Bouter et al. (2018). COSMIN Risk of Bias checklist for systematic reviews of Patient-Reported Outcome Measures . Quality of Life Research, 27(5), 1171-1179. Springer Science and Business Media LLC.

    Type: Article DOI: 10.1007/s11136-017-1765-4 OpenAlex: https://openalex.org/W2779791612

    Crossref OpenAlex OpenCitations
61. Hillary K. Schiltz , Brooke E. Magnus (2020). Gender-based differential item functioning on the child behavior checklist in youth on the autism spectrum: A brief report . Research in Autism Spectrum Disorders, 79, 101669. Elsevier BV.

    Type: Article DOI: 10.1016/j.rasd.2020.101669 OpenAlex: https://openalex.org/W3094348625

    Crossref OpenAlex OpenCitations
62. Andrew T. Jebb , Vincent Ng , Louis Tay (2021). A Review of Key Likert Scale Development Advances: 1995–2019 . Frontiers in Psychology, 12, 637547-637547. Frontiers Media SA.

    Type: Article DOI: 10.3389/fpsyg.2021.637547 OpenAlex: https://openalex.org/W3157897384

    Crossref OpenAlex OpenCitations
63. Connor Tom Keating (2021). Participatory Autism Research: How Consultation Benefits Everyone . Frontiers in Psychology, 12, 713982-713982. Frontiers Media SA.

    Type: Article DOI: 10.3389/fpsyg.2021.713982 OpenAlex: https://openalex.org/W3193937630

    Crossref OpenAlex OpenCitations
64. 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 OpenCitations
65. Cara C. Lewis , Ajeng Puspitasari , Meredith R. Boyd , Kelli Scott , Brigid R. Marriott , Mira Hoffman et al. (2018). Implementing measurement based care in community mental health: a description of tailored and standardized methods . BMC Research Notes, 11(1), 76-76. Springer Science and Business Media LLC.

    Type: Article DOI: 10.1186/s13104-018-3193-0 OpenAlex: https://openalex.org/W2787729061

    Crossref OpenAlex OpenCitations
66. Soo Youn Kim , Luc Lecavalier (2022). Evaluating the Use of Self-reported Measures in Autistic Individuals in the Context of Psychiatric Assessment: A Systematic Review . Journal of Autism and Developmental Disorders, 52(10), 4355-4374. Springer Science and Business Media LLC.

    Type: Article DOI: 10.1007/s10803-021-05323-y OpenAlex: https://openalex.org/W3205930356

    Crossref OpenAlex OpenCitations
67. William Revelle , David M. Condon (2019). Reliability from α to ω: A tutorial. Psychological Assessment, 31(12), 1395-1411. American Psychological Association (APA).

    Type: Article DOI: 10.1037/pas0000754 OpenAlex: https://openalex.org/W2966091252

    Crossref OpenAlex OpenCitations
68. C. B. Terwee , C. A. C. Prinsen , A. Chiarotto , M. J. Westerman , D. L. Patrick , J. Alonso et al. (2018). COSMIN methodology for evaluating the content validity of patient-reported outcome measures: a Delphi study . Quality of Life Research, 27(5), 1159-1170. Springer Science and Business Media LLC.

    Type: Article DOI: 10.1007/s11136-018-1829-0 OpenAlex: https://openalex.org/W2790424199

    Crossref OpenAlex OpenCitations
69. Michael J. Zickar (2020). Measurement Development and Evaluation . Annual Review of Organizational Psychology and Organizational Behavior, 7(1), 213-232. Annual Reviews.

    Type: Article DOI: 10.1146/annurev-orgpsych-012119-044957 OpenAlex: https://openalex.org/W2981386833

    Crossref OpenAlex OpenCitations
70. Helen McConachie , Colin Wilson , David Mason , Deborah Garland , Jeremy R. Parr , Alexia Rattazzi et al. (2020). What Is Important in Measuring Quality of Life? Reflections by Autistic Adults in Four Countries . Autism in Adulthood, 2(1), 4-12. SAGE Publications.

    Type: Article DOI: 10.1089/aut.2019.0008 OpenAlex: https://openalex.org/W2974102439

    Crossref OpenAlex OpenCitations
71. Carla A. Mazefsky , Lan Yu , Susan W. White , Matthew Siegel , Paul A. Pilkonis (2018). The emotion dysregulation inventory: Psychometric properties and item response theory calibration in an autism spectrum disorder sample . Autism Research, 11(6), 928-941. Wiley.

    Type: Article DOI: 10.1002/aur.1947 OpenAlex: https://openalex.org/W2796255538

    Crossref OpenAlex OpenCitations
72. Kristen Lyall , Juliette Rando , Bridget Toroni , Tobechukwu Ezeh , John N. Constantino , Lisa A. Croen et al. (2022). Examining shortened versions of the Social Responsiveness Scale for use in autism spectrum disorder prediction and as a quantitative trait measure: Results from a validation study of 3–5 year old children . JCPP Advances, 2(4), e12106-e12106. Wiley.

    Type: Article DOI: 10.1002/jcv2.12106 OpenAlex: https://openalex.org/W4302283186

    Crossref OpenAlex OpenCitations
73. Carla A. Mazefsky , Lan Yu , Paul A. Pilkonis (2021). Psychometric Properties of the Emotion Dysregulation Inventory in a Nationally Representative Sample of Youth . Journal of Clinical Child & Adolescent Psychology, 50(5), 596-608. Informa UK Limited.

    Type: Article DOI: 10.1080/15374416.2019.1703710 OpenAlex: https://openalex.org/W3000601378

    Crossref OpenAlex OpenCitations
74. Tyler C. McFayden , Alyssa J. Gatto , Angela V. Dahiya , Ligia Antezana , Yasuo Miyazaki , Lee D. Cooper (2021). Integrating Measurement-Based Care into Treatment for Autism Spectrum Disorder: Insights from a Community Clinic . Journal of Autism and Developmental Disorders, 51(10), 3651-3661. Springer Science and Business Media LLC.

    Type: Article DOI: 10.1007/s10803-020-04824-6 OpenAlex: https://openalex.org/W3117831917

    Crossref OpenAlex OpenCitations
75. Lee Anna Clark , David Watson (2019). Constructing validity: New developments in creating objective measuring instruments. Psychological Assessment, 31(12), 1412-1427. American Psychological Association (APA).

    Type: Article DOI: 10.1037/pas0000626 OpenAlex: https://openalex.org/W2923413722

    OpenAlex
76. Mirko Uljarević , Thomas Frazier , Booil Jo , Lawrence Scahill , Eric A. Youngstrom , Emily Spackman et al. (2023). Dimensional Assessment of Restricted and Repetitive Behaviors: Development and Preliminary Validation of a New Measure . Journal of the American Academy of Child & Adolescent Psychiatry, 62(5), 568-581. Elsevier BV.

    Type: Article DOI: 10.1016/j.jaac.2022.07.863 OpenAlex: https://openalex.org/W4311209466

    Crossref OpenAlex OpenCitations
77. Sandra Nolte , Cheryl Coon , Stacie Hudgens , Mathilde G. E. Verdam (2019). Psychometric evaluation of the PROMIS® Depression Item Bank: an illustration of classical test theory methods . Journal of Patient-Reported Outcomes, 3(1), 46-46. Springer Science and Business Media LLC.

    Type: Article DOI: 10.1186/s41687-019-0127-0 OpenAlex: https://openalex.org/W2965318913

    Crossref OpenAlex OpenCitations
78. Angela M. Stover , Lori D. McLeod , Michelle M. Langer , Wen-Hung Chen , Bryce B. Reeve (2019). State of the psychometric methods: patient-reported outcome measure development and refinement using item response theory . Journal of Patient-Reported Outcomes, 3(1), 50-50. Springer Science and Business Media LLC.

    Type: Article DOI: 10.1186/s41687-019-0130-5 OpenAlex: https://openalex.org/W2965456365

    Crossref OpenAlex OpenCitations
79. Courtney R. McDermott , Cristan Farmer , Katherine Gotham , Vanessa Bal (2020). Measurement of Subcategories of Repetitive Behaviors in Autistic Adolescents and Adults . Autism in Adulthood, 2(1), 48-60. SAGE Publications.

    Type: Article DOI: 10.1089/aut.2019.0056 OpenAlex: https://openalex.org/W3010509850

    Crossref OpenAlex OpenCitations
80. Hillary K. Schiltz , Brooke E. Magnus , Alana J. McVey , Angela D. Haendel , Bridget K. Dolan , Rachel E. Stanley et al. (2021). A Psychometric Analysis of the Social Anxiety Scale for Adolescents Among Youth With Autism Spectrum Disorder: Caregiver–Adolescent Agreement, Factor Structure, and Validity . Assessment, 28(1), 100-115. SAGE Publications.

    Type: Article DOI: 10.1177/1073191119851563 OpenAlex: https://openalex.org/W2965818885

    Crossref OpenAlex OpenCitations
81. Ariana Riccio , Jin Delos Santos , Steven K. Kapp *Autistic author. Learn more… , Allison Jordan , Danielle DeNigris , Kristen Gillespie-Lynch (2020). Developing the Multidimensional Visual Scale Assessing Affect, Anxiety, Pride, and Energy Through a Research Partnership with Autistic Scholars . Autism in Adulthood, 2(1), 87-100. SAGE Publications.

    Type: Article DOI: 10.1089/aut.2019.0067 OpenAlex: https://openalex.org/W3008827403

    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
82. L. B. Mokkink , M. Boers , C. P. M. van der Vleuten , L. M. Bouter , J. Alonso , D. L. Patrick et al. (2020). COSMIN Risk of Bias tool to assess the quality of studies on reliability or measurement error of outcome measurement instruments: a Delphi study . BMC Medical Research Methodology, 20(1), 293-293. Springer Science and Business Media LLC.

    Type: Article DOI: 10.1186/s12874-020-01179-5 OpenAlex: https://openalex.org/W3107903990

    Crossref OpenAlex OpenCitations
83. Rebecca Poulsen *Autistic author. Learn more… , Patrick Dwyer *Autistic author. Learn more… , Dena L. Gassner *Autistic author. Learn more… , Melanie Heyworth *Autistic author. Learn more… , Zachary J. Williams *Autistic author. Learn more… (2023). The INSAR Community Collaborator Request: Using community–academic partnerships to enhance outcomes of participatory autism research . Autism Research, 16(11), 2071-2076. Wiley.

    Type: Article DOI: 10.1002/aur.3027 OpenAlex: https://openalex.org/W4386569447

    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
84. Christina Nicolaidis , Dora M Raymaker *Autistic author. Learn more… , Katherine McDonald , Emily M. Lund , Sandra M. Leotti , Steven K. Kapp *Autistic author. Learn more… et al. (2020). Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability: Lessons Learned and Recommendations . Autism in Adulthood, 2(1), 61-76. SAGE Publications.

    Type: Article DOI: 10.1089/aut.2019.0074 OpenAlex: https://openalex.org/W3008675651

    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
85. Silia Vitoratou , Nora Uglik-Marucha , Chloe Hayes , Andrew Pickles (2023). An introductory comprehensive guide for assessing measurement tool quality: the Contemporary Psychometrics (ConPsy) Checklist . Center for Open Science.

    Type: Preprint DOI: 10.31234/osf.io/t2pbj OpenAlex: https://openalex.org/W4385875363

    Crossref OpenAlex OpenCitations
86. Christina Nicolaidis , Kelly Y. Zhen , Junghee Lee , Dora M Raymaker *Autistic author. Learn more… , Steven K. Kapp *Autistic author. Learn more… , Lisa A. Croen et al. (2021). Psychometric testing of a set of patient-reported instruments to assess healthcare interventions for autistic adults . Autism, 25(3), 786-799. SAGE Publications.

    Type: Article DOI: 10.1177/1362361320967178 OpenAlex: https://openalex.org/W3094102358

    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
87. Laura A. Pecora , Merrilyn Hooley , Laurie Sperry , Gary B. Mesibov , Mark A. Stokes (2020). Sexuality and Gender Issues in Individuals with Autism Spectrum Disorder . Child and Adolescent Psychiatric Clinics of North America, 29(3), 543-556. Elsevier BV.

    Type: Article DOI: 10.1016/j.chc.2020.02.007 OpenAlex: https://openalex.org/W3014347610

    Crossref OpenAlex OpenCitations
88. Zachary J. Williams *Autistic author. Learn more… , Roseann Schaaf , Karla Ausderau , Grace T. Baranek , D. Jonah Barrett , Carissa J. Cascio et al. (2023). Examining the latent structure and correlates of sensory reactivity in autism: a multi-site integrative data analysis by the autism sensory research consortium . Molecular Autism, 14(1), 31-31. Springer Science and Business Media LLC.

    Type: Article DOI: 10.1186/s13229-023-00563-4 OpenAlex: https://openalex.org/W4386209640

    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
89. Ann Wagner , Leslie Caplan , Denise Juliano-Bult , Nicole Williams (2020). Improving the Rigor of Research on Autism in Adulthood Requires Valid and Reliable Measurement Tools . Autism in Adulthood, 2(3), 174-176. SAGE Publications.

    Type: Article DOI: 10.1089/aut.2020.0001 OpenAlex: https://openalex.org/W3042126566

    OpenAlex
90. Brianne Tomaszewski , Bonnie Kraemer , Jessica R. Steinbrenner , Leann Smith DaWalt , Laura J. Hall , Kara Hume et al. (2020). Student, Educator, and Parent Perspectives of Self‐Determination in High School Students with Autism Spectrum Disorder . Autism Research, 13(12), 2164-2176. Wiley.

    Type: Article DOI: 10.1002/aur.2337 OpenAlex: https://openalex.org/W3046335253

    Crossref OpenAlex OpenCitations
91. Jürgen Sauer , Jürgen Baumgartner , Naomi Frei , Andreas Sonderegger (2021). Pictorial Scales in Research and Practice . European Psychologist, 26(2), 112-130. Hogrefe Publishing Group.

    Type: Article DOI: 10.1027/1016-9040/a000405 OpenAlex: https://openalex.org/W3091205973

    Crossref OpenAlex OpenCitations
92. Zachary J. Williams *Autistic author. Learn more… (2022). Commentary: The construct validity of ‘camouflaging’ in autism: psychometric considerations and recommendations for future research ‐ reflection on Lai et al. (2020) . Journal of Child Psychology and Psychiatry, 63(1), 118-121. Wiley.

    Type: Article DOI: 10.1111/jcpp.13468 OpenAlex: https://openalex.org/W3171113476

    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
93. Hillary K. Schiltz , Brooke E. Magnus (2021). Differential Item Functioning Based on Autism Features, IQ, and Age on the Screen for Child Anxiety Related Disorders (SCARED ) Among Youth on the Autism Spectrum . Autism Research, 14(6), 1220-1236. Wiley.

    Type: Article DOI: 10.1002/aur.2481 OpenAlex: https://openalex.org/W3127578912

    Crossref OpenAlex OpenCitations
94. (n.d.). Anxiety disorders in autistic people: A narrative review . Anxiety disorders in autistic people: A narrative review.

    Type: Other

    Crossref
95. Zachary J. Williams *Autistic author. Learn more… , Carissa J. Cascio , Tiffany G. Woynaroski (2023). Measuring subjective quality of life in autistic adults with the PROMIS global–10: Psychometric study and development of an autism-specific scoring method . Autism, 27(1), 145-157. SAGE Publications.

    Type: Article DOI: 10.1177/13623613221085364 OpenAlex: https://openalex.org/W4223420221

    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
96. Sofia von Humboldt , Joana Rolo , Isabel Leal (2019). Psychological Assessment . In Encyclopedia of Gerontology and Population Aging (pp. 1-8). Springer International Publishing.

    Type: Book chapter DOI: 10.1007/978-3-319-69892-2_84-1 OpenAlex: https://openalex.org/W4245797654

    OpenAlex
97. Debby ten Hove , Terrence D. Jorgensen , L. Andries van der Ark (2024). Updated guidelines on selecting an intraclass correlation coefficient for interrater reliability, with applications to incomplete observational designs. Psychological Methods, 29(5), 967-979. American Psychological Association (APA).

    Type: Article DOI: 10.1037/met0000516 OpenAlex: https://openalex.org/W4294123474

    Crossref OpenAlex OpenCitations
98. Wagner A. (2020). Autism in adulthood . Autism in adulthood, 174.

    Type: Other

    Crossref