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., & AASPIRE (2025). Consensus on high-priority outcomes to be used in the evaluation of services for autistic adults: Results from a “CBPR-Nested Delphi Process”. Autism, 29(8), 1959-1972. https://doi.org/10.1177/13623613251322082

Publication date: 5 Jun 2025 Added to AutiHub: 6 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
14
Publication authors identified as autistic
7 / 14 (50.0%)
  1. Christina Nicolaidis
  2. Mirah Scharer
  3. Dora M. Raymaker *
  4. Joseph Vera
  5. Todd Edwards
  1. Ian Moura *
  2. Mary Baker-Ericzén
  3. Joelle Maslak *
  4. Liu-Qin Yang
  5. Rachel Kripke-Ludwig *
  1. Steven K. Kapp *
  2. Andrea Joyce *
  3. Anna Furra Wallington *
  4. AASPIRE

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 approach in what we are calling a “CBPR-Nested Delphi Process.” The process allowed us to reach a 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. Lay abstract Why was this project done? People are starting to recognize the need for services to improve the lives of autistic adults. But less is known about how to best evaluate such services. What were the goals of the project? To identify (1) which outcomes are most important to measure when evaluating the effectiveness of services for autistic adults and (2) how we can successfully measure them using surveys. What did the researchers do? We used a method called a “Delphi process” that gets input from lots of different experts. We used that method inside our own long-standing community-based participatory research (CBPR) process so that we could share power between the academic and community members of our team. We reached a full consensus (agreement) among 53 experts. These experts had professional and/or lived experience as autistic adults, family members, health and disability service providers, autism community leaders, and researchers. What does this study add? 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 surveys that try to measure these outcomes would need adaptations to be used with autistic adults (or if needed, with their caregivers). What are the implications? Researchers and service providers should consider targeting services to these outcomes. They should evaluate the effectiveness of services using surveys that have been created with and for autistic adults.

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Cited bibliography overview

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Cited references
60
With a DOI
57
Without a DOI, from raw bibliography text
3
18 / 60 (30.0%) cited references include at least one author identified as autistic.
References with data to complete
1 / 60 (1.7%)
References with detected author names
59 / 60 (98.3%)
Without detected author names
1
Without a structured title
1
Without a stable identifier
3
References with raw author names still to review
1
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
311
From DOI or external metadata
311
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
1
207 / 311 (66.6%) names are linked to an author already present in AutiHub. 104 / 311 (33.4%) names are not yet linked.
Names linked to a person identified as autistic
66 / 311 (21.2%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 66 / 207 (31.9%). Distinct people identified as autistic: 33 / 240 (13.8%).
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