Dora Raymaker

Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership

ABSTRACTBACKGROUNDLittle is known about the healthcare experiences of adults on the autism spectrum. Moreover, autistic adults have rarely been included as partners in autism research.OBJECTIVETo compare the healthcare experiences of autistic and non-autistic adults via an online survey.METHODSWe 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.RESULTSFour hundred and thirty-seven participants completed the survey (209 autistic, 228 non-autistic). All adapted scales had good to excellent internal consistency reliability (alpha 0.82–0.92) and strong construct validity. In multivariate analyses, after adjustment for demographic characteristics, health insurance, and overall health status, autistic adults reported lower satisfaction with patient-provider communication (beta coefficient −1.9, CI −2.9 to −0.9), general healthcare self-efficacy (beta coefficient −11.9, CI −14.0 to −8.6), and chronic condition self-efficacy (beta coefficient −4.5, CI −7.5 to −1.6); higher odds of unmet healthcare needs related to physical health (OR 1.9 CI 1.1–3.4), mental health (OR 2.2, CI 1.3–3.7), and prescription medications (OR 2.8, CI 2.2–7.5); lower self-reported rates of tetanus vaccination (OR 0.5, CI 0.3–0.9) and Papanicolaou smears (OR 0.5, CI 0.2–0.9); and greater odds of using the emergency department (OR 2.1, CI 1.8–3.8).CONCLUSIONA CBPR approach may facilitate the inclusion of people with disabilities in research by increasing researchers’ ability to create accessible data collection instruments. Autistic adults who use the Internet report experiencing significant healthcare disparities. Efforts are needed to improve the healthcare of autistic individuals, including individuals who may be potentially perceived as having fewer disability-related needs.

Collaboration Strategies in Nontraditional Community-Based Participatory Research Partnerships: Lessons From an Academic–Community Partnership With Autistic Self-Advocates

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 a number of strategies that integrate technology and process to successfully equalize power and accommodate diverse communication and collaboration needs. Conclusions: CBPR can be conducted successfully with autistic self-advocates. Our strategies may be useful to other CBPR partnerships, especially ones that cannot meet in person or that include people with diverse communication needs.

“Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum:

Our objective was to obtain an in-depth understanding of autistic adults’ experiences with healthcare and their recommendations for improving care. Our academic–community partnership used a community-based participatory research approach to conduct semi-structured, open-ended interviews with 39 autistic adults and 16 people who had experience supporting autistic adults in healthcare settings. Participants identified patient-level, autism-related factors that impact healthcare interactions, including verbal communication skills, sensory sensitivities, challenges with body awareness, slow processing speed, atypical non-verbal communication, and challenges with organization. However, the success of healthcare interactions largely depended on the interplay between patient- and provider-level factors, as well as the larger context in which patients were receiving care. Provider-level factors included providers’ knowledge about autism in adults, incorrect assumptions about individual patients, willingness to allow written communication, use of accessible language, openness to providing other accommodations, and skill in appropriately incorporating supporters. System-level factors included the availability of supporters, complexity of the healthcare system, accessibility of healthcare facilities, and stigma about autism. Further efforts are needed to empower patients, adequately train providers, increase the accessibility of the healthcare system, and decrease discrimination.

Paradigm Shifts in Disability and Health: Toward More Ethical Public Health Research

Disability is often considered a health outcome disproportionately experienced by minority groups. It is also possible to view people with disabilities as a minority group that itself experiences health disparities. Calls to reduce these disparities necessitate the inclusion of people with developmental disabilities in research, although resulting ethical issues can thwart scientific progress. Using disability rights principles can help address ethical challenges and promote safe, respectful public health research. Examples include applying human rights frameworks, providing accommodations, attending to power, countering legacies of deficits-based models of disability, and transforming access to science more broadly. Collectively, these strategies can encourage broader engagement in safe, respectful, inclusive public health research aimed at promoting the health and well-being of people with developmental disabilities.

Primary Care for Adults on the Autism Spectrum

Autism spectrum disorder (ASD) is defined by differences in social communication and restricted, repetitive patterns of behavior, interests, or activities. Skills and challenges can change depending on environmental stimuli, supports, and stressors. Quality of life can be improved by the use of accommodations, assistive technologies, therapies to improve adaptive function or communication, caregiver training, acceptance, access, and inclusion. This article focuses on the identification of ASD in adults, referrals for services, the recognition of associated conditions, strategies and accommodations to facilitate effective primary care services, and ethical issues related to caring for autistic adults.

Development of an audio-computer assisted self-interview to investigate violence and health in the lives of adults with developmental disabilities

BACKGROUND Audio computer-assisted self-interviews (ACASIs) have safely and effectively obtained sensitive research data from the general public and have been recommended for use with people with disabilities. However, few studies have used ACASIs with people with disabilities and ACASIs have not been used to investigate the relationship between disability, interpersonal violence (IPV), and physical and psychological health among people with developmental disabilities (PWDD). OBJECTIVE We developed an accessible ACASI specifically designed to allow PWDD to answer questions independently, while privately and securely collecting anonymous data related to their disability, IPV experiences, and physical and psychological health. METHODS We used a safety protocol to apply community based participatory research (CBPR) principles and an iterative process to create, test, and administer a cross-sectional ACASI survey to 350 adults with developmental disabilities in urban and rural locales. RESULTS Most participants completed the ACASI independently and reported that its accessibility features allowed them to do so. Most also agreed that the ACASI was easy to use, its questions were easy to understand, and that they would prefer using an ACASI to answer IPV and health-related questions rather than in a face-to-face interview. The majority agreed that health and safety were critical issues to address. CONCLUSIONS ACASI technology has the potential to maximize the independent and private participation of PWDD in research on sensitive topics. We recommend further exploration into accessibility options for ACASI technology, including hardware and Internet applications.

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). Autistic participants selected different and greater barriers to healthcare, particularly in areas related to emotional regulation, patient-provider communication, sensory sensitivity, and healthcare navigation. Top barriers were fear or anxiety (35% (n = 74)), not being able to process information fast enough to participate in real-time discussions about healthcare (32% (n = 67)), concern about cost (30% (n = 62)), facilities causing sensory issues 30% ((n = 62)), and difficulty communicating with providers (29% (n = 61)). The Long Form instrument exhibited good content and construct validity. The items combined to create the Short Form had predominantly high levels of correlation (range 0.2–0.8, p < 0.001) and showed responsiveness to change. We recommend healthcare providers, clinics, and others working in healthcare settings to be aware of these barriers, and urge more intervention research to explore means for removing them.

Motivational Interviewing at the Intersections of Depression and Intimate Partner Violence among African American Women

This article focuses on design, training, and delivery of a culturally tailored, multi-faceted intervention that used motivational interviewing (MI) and case management to reduce depression severity among African American survivors of intimate partner violence (IPV). We present the details of the intervention and discuss its implementation as a means of creating and providing culturally appropriate depression and violence services to African American women. We used a community-based participatory research approach to develop and evaluate the multi-faceted intervention. As part of the evaluation, we collected process measures about the use of MI, assessed MI fidelity, and interviewed participants about their experiences with the program.

Reflections of a community-based participatory researcher from the intersection of disability advocacy, engineering, and the academy

This article uses an evocative autoethnographic approach to explore the experience of being an insider-researcher in a community-based participatory research setting. Taking a holistic perspective and using the form of narrative story-telling, I examine the dynamics between the typically marginalizing (but sometimes empowering) experience of being an autistic woman and the typically privileging (but sometimes oppressive) experience of being an engineering professional, during a time of career upheaval. Themes of motivations and mentors, adversity from social services and the academy, belonging, the slipperiness of intersectional positioning, feedback cycles of opportunity, dichotomies of competence and inadequacy, heightened stakes, and power and resistance are explored through the narrative. While primarily leaving the narrative to speak for itself per the qualitative approach taken, the article concludes with a discussion of how the personal experiences described relate both to the broader work of insider-researchers within disability-related fields, and to misconceptions about self-reflection and capacity for story-telling in individuals on the autism spectrum.