The Development and Evaluation of an Online Healthcare Toolkit for Autistic Adults and their Primary Care Providers

This publication is included in the Autistic Autism Scholarship Project. four authors of this publication are identified as autistic in the project.

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Nicolaidis, C., Raymaker, D. M., McDonald, K., Kapp, S. K., Weiner, M., Ashkenazy, E., Gerrity, M., Kripke, C., Platt, L., & Baggs, M. (2016). The Development and Evaluation of an Online Healthcare Toolkit for Autistic Adults and their Primary Care Providers. Journal of General Internal Medicine, 31(10), 1180-1189. https://doi.org/10.1007/s11606-016-3763-6

Publication date: 6 Jun 2016 Added to AutiHub: 4 Jul 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

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Authors

Publication authors
10
Publication authors identified as autistic
4 / 10 (40.0%)
  1. Christina Nicolaidis
  2. Dora M. Raymaker *
  3. Katherine McDonald
  4. Steven K. Kapp *
  5. Michael Weiner
  1. Elesia Ashkenazy *
  2. Martha Gerrity
  3. Clarissa Kripke
  4. Laura Platt
  5. Mel Baggs *

Abstract

BACKGROUND: The healthcare system is ill-equipped to meet the needs of adults on the autism spectrum. OBJECTIVE: Our goal was to use a community-based participatory research (CBPR) approach to develop and evaluate tools to facilitate the primary healthcare of autistic adults. DESIGN: Toolkit development included cognitive interviewing and test-retest reliability studies. Evaluation consisted of a mixed-methods, single-arm pre/post-intervention comparison. PARTICIPANTS: A total of 259 autistic adults and 51 primary care providers (PCPs) residing in the United States. INTERVENTIONS: The AASPIRE Healthcare toolkit includes the Autism Healthcare Accommodations Tool (AHAT)-a tool that allows patients to create a personalized accommodations report for their PCP-and general healthcare- and autism-related information, worksheets, checklists, and resources for patients and healthcare providers. MAIN MEASURES: Satisfaction with patient-provider communication, healthcare self-efficacy, barriers to healthcare, and satisfaction with the toolkit's usability and utility; responses to open-ended questions. KEY RESULTS: Preliminary testing of the AHAT demonstrated strong content validity and adequate test-retest stability. Almost all patient participants (>94 %) felt that the AHAT and the toolkit were easy to use, important, and useful. In pre/post-intervention comparisons, the mean number of barriers decreased (from 4.07 to 2.82, p < 0.0001), healthcare self-efficacy increased (from 37.9 to 39.4, p = 0.02), and satisfaction with PCP communication improved (from 30.9 to 32.6, p = 0.03). Patients stated that the toolkit helped clarify their needs, enabled them to self-advocate and prepare for visits more effectively, and positively influenced provider behavior. Most of the PCPs surveyed read the AHAT (97 %), rated it as moderately or very useful (82 %), and would recommend it to other patients (87 %). CONCLUSIONS: The CBPR process resulted in a reliable healthcare accommodation tool and a highly accessible healthcare toolkit. Patients and providers indicated that the tools positively impacted healthcare interactions. The toolkit has the potential to reduce barriers to healthcare and improve healthcare self-efficacy and patient-provider communication.

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 13:57.

Cited references
27
With a DOI
24
Without a DOI, from raw bibliography text
3
8 / 27 (29.6%) cited references include at least one author identified as autistic.
References with data to complete
3 / 27 (11.1%)
References with detected author names
24 / 27 (88.9%)
Without detected author names
3
Without a structured title
3
Without a stable identifier
3
References with raw author names still to review
3
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
124
From DOI or external metadata
124
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
11
75 / 124 (60.5%) names are linked to an author already present in AutiHub. 49 / 124 (39.5%) names are not yet linked.
Names linked to a person identified as autistic
29 / 124 (23.4%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 29 / 75 (38.7%). Distinct people identified as autistic: 7 / 80 (8.8%).
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