Measuring High-Priority Outcomes in Autistic Adults: Initial psychometric assessment of the instruments in the AASPIRE Measurement Toolkit

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Nicolaidis, C., Raymaker, D. M., Baker-Ericzén, M., Rosa, S. D. R., Edwards, T., Frowner, E., Horner-Johnson, W., Joyce, A., Kapp, S. K., Kripke, C., Taylor, J. L., Love, J., Kripke-Ludwig, R., Maslak, J., McDonald, K., Moura, I., Scharer, M., Siddeek, Z., Smith, Y.,..., & Chaiyachakorn, N. (2026). Measuring High-Priority Outcomes in Autistic Adults: Initial psychometric assessment of the instruments in the AASPIRE Measurement Toolkit [Preprint]. openRxiv. https://doi.org/10.64898/2026.03.23.26349108

Publication date: 25 Mar 2026 Added to AutiHub: 6 Jul 2026 Type: Preprint Article language: English
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Authors

Publication authors
24
Publication authors identified as autistic
3 / 24 (12.5%)
  1. Christina Nicolaidis
  2. Dora M Raymaker *
  3. Mary Baker-Ericzén
  4. Shannon Des Roches Rosa
  5. Todd Edwards
  6. Emanuel Frowner
  7. Willi Horner-Johnson
  8. Andrea Joyce
  1. Steven K. Kapp *
  2. Clarissa Kripke
  3. Julie Lounds Taylor
  4. Julia Love
  5. Rachel Kripke-Ludwig
  6. Joelle Maslak *
  7. Katherine McDonald
  8. Ian Moura
  1. Mirah Scharer
  2. Zack Siddeek
  3. Yvanova Smith
  4. Joseph Vera
  5. Anna Wallington
  6. Liu-Qin Yang
  7. KJ Flores
  8. N Chaiyachakorn

Abstract

Background: Adult autism services research is hampered by a lack of accessible self-reported outcome measures. The AASPIRE Outcomes Project used a community-based participatory research (CBPR) approach to create and test the AASPIRE Measurement Toolkit, a set of accessible survey instruments for use in real-world settings. The core toolkit contains 12 characteristics modules and 19 outcome measures, each with self-reported and caregiver-reported versions. Methods: We used our CBPR-nested Delphi process, our collaborative instrument adaptation/creation process, and cognitive interviews to ensure accessibility and content validity. We then conducted a longitudinal survey to validate the outcome measures in a pragmatic sample of 870 autistic adults from two healthcare systems, two disability service systems, and the larger autistic community in the United States. Participants completed surveys at 3 time points over 12-18 months. A 15% random subset completed an additional retest survey 2 weeks after the second time point. We assessed 1) accessibility using completion rates and perceived ease of use; 2) internal consistency using Cronbach’s alphas and omegas; 3) convergent validity using Pearson’s correlations; 4) two-week test-retest reliability using interclass correlation coefficients; and 5) six-month responsiveness to change by comparing self-perceived change with change in scores. Results: Over 90% of participants reported the survey items were easy to understand. All instruments had excellent completion rates (<5% of participants were missing >10% of items). The outcome measures and their pre-determined subscales demonstrated strong content validity, internal consistency reliability, test-retest reliability, convergent and discriminant validity, and responsiveness to change. Conclusion: The 19 outcome measures in the AASPIRE Measurement Toolkit are accessible and have strong initial psychometric properties. We will report additional in-depth assessments separately for each measure. All instruments are available for free and can help clinicians, service providers, advocacy organizations, and researchers assess the effectiveness of interventions and follow changes in outcomes over time.

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Cited references
76
Total cited references integrated for this publication.
Cited references with an identified autistic author
18 / 76 (23.7%)
Cited author occurrences identified as autistic
50 / 465 (10.8%)
Among occurrences linked to AutiHub author records: 50 / 255 (19.6%). Distinct cited authors identified as autistic: 22 / 363 (6.1%).
Cited author occurrences linked to AutiHub author records
255 / 465 (54.8%)
Distinct linked cited authors: 159 / 363 (43.8%)
Linked cited-author occurrences not identified as autistic
205 / 255 (80.4%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 205 / 465 (44.1%). Distinct linked cited authors not identified as autistic: 137 / 159 (86.2%).
2 cited bibliography entries could not be fully enriched from DOI metadata.
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