Social and Behavioral Sciences Commons^™

Co-Design Of An Nhs Primary Care Health Check For Autistic Adults, Helen Taylor, Barry Ingham, David Mason, Tracy Finch, Colin Wilson, Clare Scarlett, Sebastian Moss, Christina M. Nicolaidis, Multiple Additional Authors

School of Social Work Faculty Publications and Presentations

Autistic people experience more health conditions and earlier mortality. This study investigated views about a primary care health check for autistic adults to inform its design. Fifty-one people participated in consultation groups and interviews, comprising autistic adults (some with co-occurring intellectual disabilities), adults with intellectual disabilities, supporters and health professionals. Participants wanted the health check to cover physical and mental health and social functioning. They emphasised the importance of sharing information about individual needs and associated adjustments before the health check. They highlighted the need to change the way healthcare services communicate with autistic people, such as reducing phone contact …

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 …

The Development And Evaluation Of An Online Healthcare Toolkit For Autistic Adults And Their Primary Care Providers, Christina Nicolaidis, Dora Raymaker, Katherine E. Mcdonald, Steven K. Kapp, Michael Weiner, Elesia Ashkenazy, Martha Gerrity, Clarissa Kripke, Laura Platt, Amelia E.V. Baggs

School of Social Work Faculty Publications and Presentations

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 …

Collaboration Strategies In Non-Traditional Cbpr Partnerships: Lessons From An Academic-Community Partnership With Autistic Self-Advocates, Christina Nicolaidis, Dora Raymaker, Katherine Mcdonald, Sebastian Dern, Elesia Ashkenazy, Cody Boisclair, Scott Robertson, Amelia E.V. Baggs

School of Social Work Faculty Publications and Presentations

Background: Most community-based participatory research (CBPR) projects involve local communities defined by race, ethnicity, geography, or occupation. Autistic self-advocates, a geographically dispersed community defined by disability, experience issues in research similar to those expressed by more traditional minorities.

Objectives: We sought to build an academic-community partnership that uses CBPR to improve the lives of people on the autistic spectrum.

Methods: The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) includes representatives from academic, self-advocate, family, and professional communities. We are currently conducting several studies about the health care experiences and well-being of autistic adults.

Lessons Learned: We have learned …