Social and Behavioral Sciences Commons^™

Having All Of Your Internal Resources Exhausted Beyond Measure And Being Left With No Clean-Up Crew’’: Defining Autistic Burnout, Dora Raymaker, Alan R. Teo, Nicole A. Steckler, Brandy Lentz, Mirah L. Scharer, Austin Delos Santos, Steven K. Kapp, Morrigan Hunter, Andee Joyce, Christina Nicolaidis

School of Social Work Faculty Publications and Presentations

Background: Although autistic adults often discuss experiencing ‘‘autistic burnout’’ and attribute serious negative outcomes to it, the concept is almost completely absent from the academic and clinical literature.

Methods: We used a community-based participatory research approach to conduct a thematic analysis of 19 interviews and 19 public Internet sources to understand and characterize autistic burnout. Interview participants were autistic adults who identified as having been professionally diagnosed with an autism spectrum condition. We conducted a thematic analysis, using a hybrid inductive–deductive approach, at semantic and latent levels, through a critical paradigm. We addressed trustworthiness through multiple coders, peer debriefing, …

Creating Accessible Survey Instruments For Use With Autistic Adults And People With Intellectual Disability: Lessons Learned And Recommendations, Christina Nicolaidis, Dora Raymaker, Katherine E. Mcdonald, Emily M. Lund, Sandra Marie Leotti, Steven K. Kapp, Marsha Katz, Leanne Beers, Clarissa Kripke, Joelle Maslak, Multiple Additional Authors

School of Social Work Faculty Publications and Presentations

Despite growing appreciation of the need for research on autism in adulthood, few survey instruments have been validated for use with autistic adults. We conducted an institutional ethnography of two related partnerships that used participatory approaches to conduct research in collaboration with autistic people and people with intellectual disability. In this article, we focus on lessons learned from adapting survey instruments for use in six separate studies. Community partners identified several common problems that made original instruments inaccessible. Examples included: (1) the use of difficult vocabulary, confusing terms, or figures of speech; (2) complex sentence structure, confusing grammar, or incomplete …

Shifting The System: Aaspire And The Loom Of Science And Activism, Dora Raymaker

School of Social Work Faculty Publications and Presentations

In 2006 Dora Raymaker, Autistic person and autistic rights activist, co-founded the Academic Autism Spectrum Partnership in Research and Education (AASPIRE) with Christina Nicolaidis, a physician-researcher and parent of an autistic child. AASPIRE works within the sphere of academic health and social services research to conduct projects the A/autistic community wants done. It endeavors to return power to communities that experience oppression to make their voices heard in research and policy settings. For example, its website autismandhealth.org offers resources for autistic adults, their supporters, and healthcare providers to improve the healthcare of autistic adults in the US. AASPIRE has served …