AASPIRE Healthcare Toolkit

Tools for Autistic Adults and Healthcare Providers

The AASPIRE Healthcare Toolkit is a comprehensive resource designed to improve healthcare experiences for autistic adults. Focusing on care with a primary doctor, the toolkit offers practical information, worksheets, and the ability to create a personalized healthcare accommodations report to help to make healthcare visits smoother—before, during, and after appointments.

Developed by the Academic Autism Spectrum Partnership in Research and Education (AASPIRE) this toolkit reflects a commitment to improving the health and well-being of autistic individuals. OAR is grateful for AASPIRE’s dedication and expertise in developing this invaluable resource and is honored to partner with them to continue offering this resource by making it accessible through our website.

Patients & Supporters

Explore essential topics and resources to navigate the healthcare system, understand your rights, and prepare for appointments. Find worksheets, tips, and more to support smoother healthcare experiences.

Healthcare Providers

Access valuable insights and guidance on providing effective care for autistic patients, including autism-specific considerations, legal and ethical responsibilities, and best practices for inclusive healthcare.

Autism Healthcare Accommodations Tool

Let your healthcare provider know about your individual needs. Create a personalized healthcare accommodations report that highlights your unique needs and preferences. Designed to improve communication and understanding, this report offers tailored suggestions to help your healthcare providers create a more supportive and accessible experience for you.

Acknowledgements

The AASPIRE Healthcare Toolkit was created as part of a project by the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) to help improve healthcare access and quality for adults on the autism spectrum. The project was funded by the National Institute Of Mental Health, Award Number R34MH092503. The content on this toolkit is solely the responsibility of the authors, AASPIRE, and does not necessarily represent the official views of the Organization for Autism Research, National Institute of Mental Health, the National Institutes of Health, or other funding agencies.

The toolkit was created in collaboration between Oregon Health and Science University, the Autistic Self-Advocacy Network, Portland State University, the Autism Society of Oregon, Syracuse University, Indiana University, and members of the Autistic community at large. OAR is grateful for their dedication and expertise in developing this invaluable resource and is honored to partner with AASPIRE to continue offering this resource by making it accessible through our website.

Publications

Publications describing the development and testing of the Healthcare Toolkit

Nicoladis, C., Raymaker, D.M., McDonald, K., Kapp, S., Weiner, M., Ashkenazy, E., Gerrity, M., Kripke, C., Platt, L., Baggs, A. (2016). The development and evaluation of an online healthcare toolkit for autistic adults and their providers.e, Journal of General Internal Medicine. Published ahead of print June, 2016. DOI: 10.1007/s11606-016-3763-6
download toolkit main paper

AASPIRE research studies that informed the Healthcare Toolkit

Raymaker, D.M., McDonald, K.E., Ashkenazy, E., Gerrity, M., Baggs, A.M., Kripke, C., Hourston, S., & Nicolaidis, C. (2016). Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities. Autism, 1-13.
access barriers paper online

Nicolaidis, C., Raymaker, D.M., McDonald, K., Baggs, A.E.V., Dern, S., Kapp, S., Weiner, M., Boisclair, W.C., Ashkenazy, E. (2015) “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum. Autism: The International Journal of Research and Practice. 19(7);824-831.
hc1BCinterviewAutism.pdf (~233Kb)

Nicolaidis, C., Raymaker, D., McDonald, K, Dern, S., Boisclair, W.C., Ashkenazy, E., Baggs, A. (2013). Comparison of healthcare experiences in autistic and non-autistic adults: A cross-sectional online survey facilitated by an academic-community partnership Journal of General Internal Medicine. 28(6);761-769.
hc1AsurveyJGIM.pdf (~220Kb)
Healthcare Survey Press Release HTML

AASPIRE papers about the clinical care of adults on the autism spectrum

Nicolaidis, C., Kripke, C.C., Raymaker, D.M. (2014) Primary Care for Adults on the Autism Spectrum Medical Clinics of North America. 98;1169-1191.
AASPIRE_PC_ASD_Med_Clinics_Accepted.pdf (~580Kb)

Nicolaidis, C. What Can Physicians Learn From the Neurodiversity Movement? Virtual Mentor: American Medical Association Journal of Ethics.2012. 14(6): 503-510.
neurodiversity_VM.pdf (~89KB)

Publications about AASPIRE’s community based participatory research process and the Healthcare Toolkit

Raymaker, D.M. (2016). Intersections of critical systems thinking and community based participatory research. Systemic Practice and Action Research. Published ahead of print April, 2016. DOI: 10.1007/s11213-016-9376-5
access cst/cbpr paper online

Raymaker, D.M. (2016) Reflections of a community based participatory researcher from the intersection of disability advocacy, engineering, and the academy. Action Research. Published ahead of print March, 2016. DOI: 10.1177/1476750316636669
access reflection paper online

Nicolaidis, C., Raymaker, D.M. (2015). Community based participatory research with communities defined by race, ethnicity, and disability: Translating theory to practice. In Bradbury, Ed. The SAGE Handbook of Action Research (ch. 17).

Nicolaidis, C., Raymaker, D., McDonald, K, Dern, S., Ashkenazy, E., Boisclair, W.C., Robertson, S, Baggs, A. (2011). Collaboration strategies in non-traditional CBPR partnerships: Lessons from an academic-community partnership with autistic self-advocates. Progress in Community Health Partnerships: Research, Education, and Action. 5(2);143-150.
AASPIRE_CBPR_PCHP.pdf(~1.2 MB)

More information about AASPIRE and its research projects can be found on the AASPIRE Home site.

Disclaimer: Information found on the Healthcare Toolkit webpages, related resources, downloadable documents, and links are not a substitute for professional medical advice. Users of the site should consult with a physician or other health care provider to discuss specific concerns if they require further information or clarity.

Contact the Toolkit Authors

For questions or comments about the Healthcare Toolkit or Autism Healthcare Accommodations Tool please fill out the form below. The form will go to AASPIRE, the toolkit’s authors, and OAR staff. Please do not include any private or health-related information, as it is not intended to collect sensitive personal details.

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