Digital Commons Network^™

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, …

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. …

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 …

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 …

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 …

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 …

A Systematic Review Of What Barriers And Facilitators Prevent And Enable Physical Healthcare Services Access For Autistic Adults, David Mason, Barry Ingham, Anna Urbanowicz, Cos Michael, Heather Birtles, Marc Woodbury‑Smith, Toni Brown, Ian James, Clare Scarlett, Christina Nicolaidis, Jeremy R. Parr

School of Social Work Faculty Publications and Presentations

Autistic people are more likely to: be diagnosed with a range of physical health conditions (i.e. cardio-vascular disease); experience premature mortality (for most disease categories); and experience barriers to effectively accessing healthcare. This systematic review sought to identify studies that report on barriers and facilitators to physical healthcare access for autistic people. A total of 3111 records were screened and six studies were included: two quantitative, two qualitative, and two mixed-methodology studies. Patient-provider communication, sensory sensitivities, and executive functioning/planning issues emerged as important barriers to healthcare. Recommendations for clinicians and those planning services are discussed.

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 …

Autism, Tara Crapnell, Lynette Lau, Christopher D. Hanks, Christina Nicolaidis, Alice Kuo

School of Social Work Faculty Publications and Presentations

Autism spectrum disorder (ASD) is a complex, lifelong neurodevelopmental condition that is marked by deficits in social communication and interaction, and repetitive or restrictive patterns of behavior, interests, or activities. These symptoms can create challenges for individuals on the autism spectrum and their parents during the transition to adulthood, which may interfere with their ability to access and receive adequate and appropriate health care. Awareness of how the challenges associated with ASD may translate to healthcare barriers can help primary care providers address the complex needs of individuals who are on the autism spectrum and mitigate the risks of additional …

Primary Care For Adults On The Autism Spectrum, Christina Nicolaidis, Clarissa Kripke, Dora Raymaker

School of Social Work Faculty Publications and Presentations

The autistic population is very heterogeneous; individuals’ skills or challenges fall along spectra on multiple axes (spoken language, written communication, ability to perform activities of daily living, need for consistency, sensory sensitivity, emotional regulation, and so forth) and can change depending on environmental stimuli, supports, and stressors. Autistic adults have increased rates of chronic medical illnesses, including epilepsy, gastrointestinal disorders, feeding and nutritional problems, metabolic syndrome, anxiety, depression, and sleep disturbances, and greater exposure to violence and abuse. Clinicians may improve quality of life by recommending accommodations, assistive technologies, therapies to improve adaptive function or communication, and caregiver training, and …

Comparison Of Healthcare Experiences In Autistic And Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated By An Academic-Community Partnership, Christina Nicolaidis, Dora Raymaker, Katherine E. Mcdonald, Sebastian Dern, Cody Boisclair, Elesia Ashkenazy, Amelia E.V. Baggs

School of Social Work Faculty Publications and Presentations

BACKGROUND

Little is known about the healthcare experiences of adults on the autism spectrum. Moreover, autistic adults have rarely been included as partners in autism research.

OBJECTIVE

To compare the healthcare experiences of autistic and non-autistic adults via an online survey.

METHODS

We used a community-based participatory research (CBPR) approach to adapt survey instruments to be accessible to autistic adults and to conduct an online cross-sectional survey. We assessed preliminary psychometric data on the adapted scales. We used multivariate analyses to compare healthcare experiences of autistic and non-autistic participants.

RESULTS

Four hundred and thirty-seven participants completed the survey (209 autistic, …