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., des Roches Rosa, S., 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, I.,..., & 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

Journal or book title
medRxiv
Publisher
openRxiv
Publication date: 25 Mar 2026 Added to AutiHub: 6 Jul 2026 Type: Preprint Article language: English
Publisher source (DOI) Full text OpenAlex source

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Authors

Publication authors
24
Publication authors identified as autistic
10 / 24 (41.7%)
  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. Ivanova Smith *
  4. Joseph Vera
  5. Anna Furra Wallington *
  6. Liu-Qin Yang
  7. K. J. 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.

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: 2 Oct 2026 14:01.

Cited references
76
With a DOI
72
Without a DOI, from raw bibliography text
4
25 / 76 (32.9%) cited references include at least one author identified as autistic.
References with data to complete
5 / 76 (6.6%)
References with detected author names
71 / 76 (93.4%)
Without detected author names
5
Without a structured title
5
Without a stable identifier
4
References with raw author names still to review
4
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
465
From DOI or external metadata
465
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
12
291 / 465 (62.6%) names are linked to an author already present in AutiHub. 174 / 465 (37.4%) names are not yet linked.
Names linked to a person identified as autistic
91 / 465 (19.6%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 91 / 291 (31.3%). Distinct people identified as autistic: 48 / 360 (13.3%).
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