Consensus on High-Priority Outcomes to Be Used in the Evaluation of Services for Autistic Adults: Results from a CBPR-Nested Delphi Process

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Nicolaidis, C., Scharer, M., Raymaker, D. M., Vera, J., Edwards, T., Moura, I., Baker-Ericzén, M., Maslak, J., Yang, L. Q., Kripke-Ludwig, R., Kapp, S. K., Joyce, A., Wallington, A. F., Taylor, J. L., Horner-Johnson, W., Caplan, R., Frowner, E., Smith, I., Siddeek, Z.,..., & Love, J. (2024). Consensus on High-Priority Outcomes to Be Used in the Evaluation of Services for Autistic Adults: Results from a CBPR-Nested Delphi Process [Preprint]. Center for Open Science. https://doi.org/10.31234/osf.io/34p7d

Publication date: 6 Aug 2024 Added to AutiHub: 5 Jul 2026 Type: Preprint Article language: English
Publisher source (DOI) Full text OpenAlex source

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Authors

Publication authors
22
Publication authors identified as autistic
11 / 22 (50.0%)
  1. Christina Nicolaidis
  2. Mirah Scharer
  3. Dora M. Raymaker *
  4. Joseph Vera
  5. Todd Edwards
  6. Ian Moura *
  7. Mary Baker-Ericzén
  8. Joelle Maslak *
  1. Liu-Qin Yang
  2. Rachel Kripke-Ludwig *
  3. Steven K. Kapp *
  4. Andrea Joyce *
  5. Anna Furra Wallington *
  6. Julie Lounds Taylor
  7. Willi Horner-Johnson
  8. Reid Caplan *
  1. Emanuel Frowner *
  2. Ivanova Smith *
  3. Zack Siddeek *
  4. Clarissa Kripke
  5. Katherine McDonald
  6. Julia Love

Abstract

People are increasingly recognizing the need for service interventions to improve the lives of autistic adults. However, less is known about how to best evaluate such services. We aimed to identify 1) which self-reported outcomes are most important to measure when evaluating the effectiveness of services for autistic adults and 2) what survey instruments would be needed to measure them. We nested a traditional researcher-driven “Delphi process” within our community-based participatory research (CBPR) approach in what we are calling a “CBPR-Nested Delphi Process.” The process allowed us to reach full consensus among 53 experts with professional and lived experience as autistic adults, family members, health and disability service providers, autism community leaders, and researchers. The final list of outcomes included quality of life, overall health, emotional wellbeing, anxiety, depression, suicidality, autistic burnout, social support, employment satisfaction, community participation, self-determination, access to communication, activities of daily living, satisfaction with social services, and satisfaction with healthcare services. Experts felt almost all available instruments to measure these outcomes would need adaptations to be used with autistic adults (or proxies). Researchers and service providers should consider targeting interventions to these measurable outcomes and evaluating them using instruments that have been co-developed with autistic adults.

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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 17:07.

Cited references
48
With a DOI
48
Without a DOI, from raw bibliography text
0
16 / 48 (33.3%) cited references include at least one author identified as autistic.
References with data to complete
0 / 48 (0.0%)
References with detected author names
48 / 48 (100.0%)
Without detected author names
0
Without a structured title
0
Without a stable identifier
0
References with raw author names still to review
0
References with external metadata lookup issues
0
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
264
From DOI or external metadata
264
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
175 / 264 (66.3%) names are linked to an author already present in AutiHub. 89 / 264 (33.7%) names are not yet linked.
Names linked to a person identified as autistic
58 / 264 (22.0%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 58 / 175 (33.1%). Distinct people identified as autistic: 33 / 209 (15.8%).
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