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Articles by Dora M Raymaker
Measuring High-Priority Outcomes in Autistic Adults: Initial psychometric assessment of the instruments in the AASPIRE Measurement Toolkit
The authors have declared no competing interest. This project was funded by the National Institute of Mental Health through Grant Award Number R01MH121407. It was also supported by the National Center for Advancing Translational Sciences (NCATS), National Institutes of Health, through Grant Award Number UL1TR002369. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.
Consensus on high-priority outcomes to be used in the evaluation of services for autistic adults: Results from a “CBPR-Nested Delphi Process”
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?
Applications of identity-based theories to understand the impact of stigma and camouflaging on mental health outcomes for autistic people
Introduction Autistic people have various strengths and challenges in different domains such as language, social skills, executive functioning, sensory sensitivity, and focused interests and behaviors (1), and autistic traits can range in frequency and intensity across these areas (2).
Understanding autistic burnout
Your Internet Explorer 11 browser is not supported by this site. Please upgrade to a recent browser for the best experience. Published on 01 March 2022 Author: Dr Dora Raymaker
Virtual Collection: Autism Acceptance Month 2021
Autism in Adulthood Autism in Adulthood is the home for research and scholarship on the most pressing issues affecting adults on the autism spectrum, from emerging adulthood to later life. Using original research, in-depth analysis, and inter-professional dialogue, Autism in Adulthood provides new insights and evidence to promote practice, systems, and policy change.
Psychometric testing of a set of patient-reported instruments to assess healthcare interventions for autistic adults
Akobirshoev, I., Mitra, M., Dembo, R., Lauer, E. (2020). In-hospital mortality among adults with autism spectrum disorder in the United States: A retrospective analysis of US hospital discharge data. Autism, 24, 177–189. Google Scholar | SAGE Journals | ISI Barber, C. (2017). Meeting the healthcare needs of adults on the autism spectrum. British Journal of Nursing, 26(7), 420–425. Google Scholar | Crossref | Medline Blackwell, D., Gentleman, J., Martin, M., Ng, E., Sanmartin, C., Simile, C. (2004).
Development and psychometric testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale
Akobirshoev, I., Mitra, M., Dembo, R., Lauer, E. (2020). In-hospital mortality among adults with autism spectrum disorder in the United States: A retrospective analysis of US hospital discharge data. Autism, 24(1), 177–189. Google Scholar | SAGE Journals | ISI Bruder, M. B., Kerins, G., Mazzarella, C., Sims, J., Stein, N. (2012). Brief report: The medical care of adults with autism spectrum disorders: Identifying the needs. Journal of Autism and Developmental Disorders, 42(11), 2498–2504.
“Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout
Introduction “Autistic burnout” is often used by autistic adults to describe a state of incapacitation, exhaustion, and distress in every area of life.1 Informally, autistic adults describe how burnout has cost them jobs, friends, activities, independence, mental and physical health, and pushed them to suicidal behavior.1,2 The Twitter hashtag #AutisticBurnout produces hundreds of urgent messages among autistic people trying to understand, prevent, or recover from autistic burnout.
Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities
Abstract Our objective was to use a community-based participatory research approach to identify and compare barriers to healthcare experienced by autistic adults and adults with and without other disabilities. To do so, we developed a Long- and Short-Form instrument to assess barriers in clinical and research settings. Using the Barriers to Healthcare Checklist–Long Form, we surveyed 437 participants (209 autistic, 55 non-autistic with disabilities, and 173 non-autistic without disabilities).
Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability: Lessons Learned and Recommendations
Introduction Despite autism being a lifelong disability, the vast majority of autism research, advocacy, and services have focused on children.1 Not surprisingly, reviews on almost any topic in the adult autism literature—be it physical or mental health, health care, employment, social services, social functioning, or other life outcomes—highlight the paucity of data on adulthood and the presence of important methodological concerns about including autistic adults in research.2–9 Accordingly,...
An Expert Discussion on Employment in Autism
Introduction The employment rate among autistic adults remains low.
Autism in Adulthood
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The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants
Campbell, M. L. (1998). Institutional ethnography and experience as data. Qualitative Sociology, 21(1), 55–73. Google Scholar | Crossref Cooperative Research Centre for Living with Autism . (2016). Inclusive research practice guides and checklists for autism research: Version 2.
Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities
Our objective was to use a community-based participatory research approach to identify and compare barriers to healthcare experienced by autistic adults and adults with and without other disabilities. To do so, we developed a Long- and Short-Form instrument to assess barriers in clinical and research settings. Using the Barriers to Healthcare Checklist–Long Form, we surveyed 437 participants (209 autistic, 55 non-autistic with disabilities, and 173 non-autistic without disabilities).
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