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Journal of General Internal Medicine

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Autistic people -- Medical care, Autism spectrum disorders, Autistic people -- Services for, Autism -- Research -- Citizen participation


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/postintervention 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.


Originally published in Nicolaidis, C., Raymaker, D., McDonald, K. et al. J GEN INTERN MED (2016) 31: 1180. doi:10.1007/s11606-016-3763-6, can be found online at:

Note: The online version of this article (doi:10.1007/s11606-016-3763-6) contains supplementary material, which is available to authorized users.

Portions of this paper were presented at the 2015 TASH conference in Portland, OR, December 2015.



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