Social Work 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, …

Development And Preliminary Psychometric Testing Of The Aaspire Adult Autism Healthcare Provider Self-Efficacy Scale, Christina Nicolaidis, Gavin Schnider, Junghee Lee, Dora Raymaker, Steven K. Kapp, Lisa A. Croen, Anna Urbanowicz, Joelle Maslak

School of Social Work Faculty Publications and Presentations

Our objective was to develop a measure of healthcare providers’ self-efficacy in providing healthcare to autistic adults and to better understand their training needs. We used a community based participatory research (CBPR) approach with academic researchers, autistic adults, supporters, and healthcare providers. We developed a 1-page questionnaire which included the new 6-item self-efficacy scale, two items on how challenging and rewarding it is to provide care to autistic adults, and seven items on provider characteristics. We surveyed 143 healthcare providers from eight primary care clinics in Oregon and California, USA. Preliminary psychometric testing found the AASPIRE Adult Autism Healthcare Provider …

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 …

Parent Health Beliefs, Social Determinants Of Health, And Child Health Services Utilization Among Us School-Age Children With Autism, Katharine Zuckerman, Olivia J. Lindly, Brianna Sinche, Christina Nicolaidis

School of Social Work Faculty Publications and Presentations

Objective—Substantial variation exists in ASD care by race, ethnicity, and socioeconomic status; however, the role of parent health beliefs in this variation is poorly understood. Study goals were to (1) examine variation in parent beliefs about ASD prognosis and treatment according to social determinants of health (SDH) and (2) assess whether this variation was associated with variable health services utilization, among 1420 children with special health care needs (CSHCN) having autism spectrum disorder (ASD). Methods—We used linked data from the 2011 Survey of Pathways to Diagnosis and Treatment and the 2009/10 National Survey of Children with Special Health Care Needs. …

Psychometric Testing Of Patient-Reported Instruments To Assess Healthcare Interventions For Autistic Adults, Christina Nicolaidis, Kelly Zhen, Junghee Lee, Dora Raymaker, Steven K. Kapp, Lisa A. Croen, Anna Urbanowicz, Joelle Maslak, Mirah L. Scharer

School of Social Work Faculty Publications and Presentations

There is a growing recognition of the need for interventions to improve the healthcare of autistic adults. However, there is a dearth of validated measures to evaluate such interventions. Our objectives were to use a community based participatory research approach to create an accessible set of patient- and proxy-reported instruments to measure healthcare outcomes and potential intervention targets in autistic adults and to assess the instruments’ psychometric characteristics, including content validity, construct validity, and internal consistency reliability. We administered a survey to 244 autistic adults recruited from 12 primary care clinics in Oregon and California, USA (194 participating directly, and …

An Expert Discussion On Structural Racism In Autism Research And Practice, Desiree R. Jones, Christina Nicolaidis, Lisa J. Ellwood, Arianne Garcia, Khalilah R. Johnson, Kristina Lopez, T. C. Waisman

School of Social Work Faculty Publications and Presentations

Autism research has a race problem. Despite improvements in screening and diagnosis, autism continues to be underdiagnosed in Black and Hispanic children , and those who obtain a diagnosis often have limited access to support services. Racial disparities persist during the transition to adulthood, with autistic adults from racial and ethnic minority groups experiencing a number of challenges, including lower rates of employment, social participation, and postsecondary education compared to White autistic adults. While these studies highlight the important intersection between race, ethnicity and autism, people of color remain consistently under-represented in autism research , and dialogues regarding the impact …