Barriers to healthcare and a 'triple empathy problem' may lead to adverse outcomes for autistic adults: A qualitative study.

LAY ABSTRACT: Autistic people live with more mental and physical health conditions and, on average, die younger than non-autistic people. Despite widespread commitments to tackling these issues, autistic people still report various barriers to accessing healthcare. This article aims to explore the area in depth, from the perspective of autistic people. This research benefits from being led by autistic people, for autistic people - all of the researchers are autistic, and most of us are also medical doctors. Data, in the form of written comments and stories, were collected as part of a large survey. Here, we explored these for common themes and possible deeper meaning within the experiences. People who took part reported a variety of barriers. Here, our article gives voice to their stories, in their own words. Themes included: early barriers; communication mismatch; doubt - in oneself and from doctors; helplessness and fear; and healthcare avoidance and adverse health outcomes. Our findings allowed us to create a model that aimed to understand and explain the reported barriers in the context of the previously known consequences. We also built on wider autism theories to explain our findings in more depth.

The experiences of autistic doctors: a cross-sectional study.

Introduction: Medicine may select for autistic characteristics. As awareness and diagnosis of autism are growing, more medical students and doctors may be discovering they are autistic. No studies have explored the experiences of autistic doctors. This study aimed to fill that gap. Methods: This is a cross-sectional study. A participatory approach was used to identify the need for the project and to modify a pre-existing survey for use exploring the experiences of autistic doctors. Results: We received 225 responses. 64% had a formal diagnosis of autism. The mean age of receiving a formal diagnosis was 36 (range 3-61). Most were currently working as doctors (82%). The most common specialties were general practice / family medicine (31%), psychiatry (18%), and anesthesia (11%). Almost half of those working had completed specialty training (46%) and 40% were current trainees. 29% had not disclosed being autistic to anyone at work. 46% had requested adjustments in the workplace but of these, only half had them implemented.Three quarters had considered suicide (77%), one quarter had attempted suicide (24%) and half had engaged in self-harm (49%). 80% reported having worked with another doctor they suspected was autistic, but only 22% reported having worked with another doctor they knew was autistic. Having never worked with a potentially autistic colleague was associated with having considered suicide.Most preferred to be called "autistic doctors" (64%). Most considered autism to be a difference (83%). Considering autism to be a disorder was associated with preference for the term "doctors with autism," and with having attempted suicide. Conclusion: Autistic doctors reported many challenges in the workplace. This may have contributed to a culture of nondisclosure. Mental health was poor with high rates of suicidal ideation, self-harm, and prior suicide attempts. Despite inhospitable environments, most were persevering and working successfully. Viewing autism as a disorder was associated with prior suicide attempts and a preference for person-first language. A neurodiversity-affirmative approach to autism may lead to a more positive self-identity and improved mental health. Furthermore, providing adequate supports and improving awareness of autistic medical professionals may promote inclusion in the medical workforce.

Study protocol for the ROSE Scale-Up Study: Informing a decision about ROSE as universal postpartum depression prevention.

PURPOSE: To examine the effectiveness, cost-outcome, equity, scalability, and mechanisms of the Reach Out, Stay strong, Essentials for mothers of newborns (ROSE) postpartum depression prevention (PPD) program as universal versus selective or indicated prevention. BACKGROUND: The United States Preventive Services Task Force (USPSTF) currently recommends PPD prevention for pregnant people at risk of PPD (i.e., selective/indicated prevention). However, universal prevention may be more scalable, equitable, and cost-beneficial. DESIGN: Effectiveness of ROSE for preventing PPD among people at risk is known. To assess ROSE as universal prevention, we need to determine the effectiveness of ROSE among all pregnant people, including those screening negative for PPD risk. We will enroll 2320 pregnant people, assess them with commonly available PPD risk prediction tools, randomize everyone to ROSE or enhanced care as usual, and assess ROSE as universal, selective, and indicated prevention in terms of: (1) effectiveness (PPD prevention and functioning), (2) cost-benefit, (3) equity (PPD cases prevented by universal prevention that would not be prevented under selective/indicated for minority vs. non-Hispanic white people), (4) quantitative and qualitative measures of scalability (from 98 agencies previously implementing ROSE), (5) ROSE mechanisms across risk levels. We will integrate results to outline pros and cons of the three prevention approaches (i.e., universal, selective, indicated). CONCLUSION: This will be the first trial to assess universal vs. selective/indicated PPD prevention. Trial design illustrates a novel, efficient way to make these comparisons. This trial, the largest PPD prevention trial to date, will examine scalability, an understudied area of implementation science.

Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study.

OBJECTIVES: Autistic people experience poor physical and mental health along with reduced life expectancy compared with non-autistic people. Our aim was to identify self-reported barriers to primary care access by autistic adults compared with non-autistic adults and to link these barriers to self-reported adverse health consequences. DESIGN: Following consultation with the autistic community at an autistic conference, Autscape, we developed a self-report survey, which we administered online through social media platforms. SETTING: A 52-item, international, online survey. PARTICIPANTS: 507 autistic adults and 157 non-autistic adults. PRIMARY AND SECONDARY OUTCOME MEASURES: Self-reported barriers to accessing healthcare and associated adverse health outcomes. RESULTS: Eighty per cent of autistic adults and 37% of non-autistic respondents reported difficulty visiting a general practitioner (GP). The highest-rated barriers by autistic adults were deciding if symptoms warrant a GP visit (72%), difficulty making appointments by telephone (62%), not feeling understood (56%), difficulty communicating with their doctor (53%) and the waiting room environment (51%). Autistic adults reported a preference for online or text-based appointment booking, facility to email in advance the reason for consultation, the first or last clinic appointment and a quiet place to wait. Self-reported adverse health outcomes experienced by autistic adults were associated with barriers to accessing healthcare. Adverse outcomes included untreated physical and mental health conditions, not attending specialist referral or screening programmes, requiring more extensive treatment or surgery due to late presentations and untreated potentially life-threatening conditions. There were no significant differences in difficulty attending, barriers experienced or adverse outcomes between formally diagnosed and self-identified autistic respondents. CONCLUSIONS: Reduction of healthcare inequalities for autistic people requires that healthcare providers understand autistic perspectives, communication needs and sensory sensitivities. Adjustments for autism-specific needs are as necessary as ramps for wheelchair users.

Linking the Flint Food Store Survey: Is Objective or Perceived Access to Healthy Foods Associated with Glycemic Control in Patients with Type 2 Diabetes?

Type 2 diabetes mellitus (DM-2) remains a significant public health concern, particularly in low-income neighborhoods where healthy foods may be scarcer. Despite the well-known relationship between diet and diabetes, little evidence exists on the connections among the objectively measured community and consumer food environment, perception of food access, and diabetes management or outcomes. This cross-sectional, ecological study represents the first example of combining a GIS-based, objectively measured food store audit considering quality, variety, and price of foods in stores with a clinical survey of patients with DM-2 (n = 126). In this way, we offer evidence on the relationship between healthy food access-measured more robustly than proximity to or density of certain store types-and diabetes management knowledge, medication adherence, and glycemic control. Better glycemic control was not correlated with better overall food store score, meaning that people in neighborhoods with better access to healthy foods are not necessarily more likely to manage their diabetes. While perceived healthy food access was not correlated with glycemic control, it was strongly correlated with objective healthy food access at shorter distances from home. These results have great importance both for clinical understanding of the persistence of poor diabetes management outcomes and for the understanding of the influence of the food environment on health behaviors.

Lessons for Physicians from Flint's Water Crisis.

Physicians form a vital front in recognizing unusual clinical presentations that could herald a health threat. In the Flint water crisis, physicians can be credited with playing critical roles in both uncovering the crisis and providing leadership when government failed to respond effectively. Yet most physicians in Flint were not formally trained in advocacy or leadership and might have recognized the health implications of the crisis more quickly had they received formal environmental health training. Furthermore, connections to other professional disciplines-and to the community-are vital for effective responses to environmental health threats. We explore some lessons learned in Flint that might help expedite resolution of future environmental health crises, particularly those involving aging infrastructure and diminished or dysfunctional regulation or oversight.

Documenting clinical performance problems among medical students: feedback for learner remediation and curriculum enhancement.

INTRODUCTION: We operationalized the taxonomy developed by Hauer and colleagues describing common clinical performance problems. Faculty raters pilot tested the resulting worksheet by observing recordings of problematic simulated clinical encounters involving third-year medical students. This approach provided a framework for structured feedback to guide learner improvement and curricular enhancement. METHODS: Eighty-two problematic clinical encounters from M3 students who failed their clinical competency examination were independently rated by paired clinical faculty members to identify common problems related to the medical interview, physical examination, and professionalism. RESULTS: Eleven out of 26 target performance problems were present in 25% or more encounters. Overall, 37% had unsatisfactory medical interviews, with 'inadequate history to rule out other diagnoses' most prevalent (60%). Seventy percent failed because of physical examination deficiencies, with missing elements (69%) and inadequate data gathering (69%) most common. One-third of the students did not introduce themselves to their patients. Among students failing based on standardized patient (SP) ratings, 93% also failed to demonstrate competency based on the faculty ratings. CONCLUSIONS: Our review form allowed clinical faculty to validate pass/fail decisions based on standardized patient ratings. Detailed information about performance problems contributes to learner feedback and curricular enhancement to guide remediation planning and faculty development.

"Windshield Tour" - A Journey Towards Cultural Competency.

PURPOSE: Medical educators are directing greater attention to the promotion of cultural competency when prioritizing educational program goals. An innovative educational approach is described here in a community hospital where nearly one-third of its citizens fall below the poverty level. The intent was to provide a very personal, first-hand learning experience via witnessing living conditions of patients from poverty-stricken neighborhoods. METHOD: Hospital educators worked with the community organization FACED (Faith Access to Community Economic Development). This grassroots group developed an educational driving excursion - entitled the "Windshield Tour" - of the city hospital's poorest areas. A knowledge/attitude questionnaire was administered as a pre- and post-test to 80 residents and medical students. RESULTS: Significant changes were observed in participants' understanding of personal/financial hardships faced by their patients, perceptions of availability of resources, understanding of issues related to health care benefits, and rankings of patient/physician characteristics deemed important. CONCLUSION: Hospital educators have met with FACED leaders to explore future collaborative projects that would increase exposure to the community for the residents and students.