Measurement matters: A commentary on the state of the science on patient reported outcome measures (PROMs) in autism research.

High quality science relies upon psychometrically valid and reliable measurement, yet very few Patient Reported Outcome Measures (PROMs) have been developed or thoroughly validated for use with autistic individuals. The present commentary summarizes the current state of autism PROM science, based on discussion at the Special Interest Group (SIG) at the 2022 International Society for Autism Research (INSAR) Annual Meeting and collective expertise of the authors. First, we identify current issues in autism PROM research including content and construct operationalization, informant-structure, measure accessibility, and measure validation and generalization. We then enumerate barriers to conducting and disseminating this research, such as a lack of guidance, concerns regarding funding and time, lack of accessible training and professionals with psychometric skills, difficulties collecting large representative samples, and challenges with dissemination. Lastly, we offer future priorities and resources to improve PROMs in autism research including a need to continue to evaluate and develop PROMs for autistic people using robust methods, to prioritize diverse and representative samples, to expand the breadth of psychometric properties and techniques, and to consider developing field specific guidelines. We remain extremely optimistic about the future directions of this area of autism research. This work is well positioned to have an immense, positive impact on our scientific understanding of autism and the everyday lives of autistic people and their families.

Ambulatory Intensive Care for Medically Complex Patients at a Health Care Clinic for Individuals Experiencing Homelessness: The SUMMIT Randomized Clinical Trial.

Importance: Intensive primary care interventions have been promoted to reduce hospitalization rates and improve health outcomes for medically complex patients, but evidence of their efficacy is limited. Objective: To assess the efficacy of a multidisciplinary ambulatory intensive care unit (A-ICU) intervention on health care utilization and patient-reported outcomes. Design, Setting, and Participants: The Streamlined Unified Meaningfully Managed Interdisciplinary Team (SUMMIT) randomized clinical trial used a wait-list control design and was conducted at a health care clinic for patients experiencing homelessness in Portland, Oregon. The first patient was enrolled in August 2016, and the last patient was enrolled in November 2019. Included patients had 1 or more hospitalizations in the prior 6 months and 2 or more chronic medical conditions, substance use disorder, or mental illness. Data analysis was performed between March and May 2021. Intervention: The A-ICU included a team manager, a pharmacist, a nurse, care coordinators, social workers, and physicians. Activities included comprehensive 90-minute intake, transitional care coordination, and flexible appointments, with reduced panel size. Enhanced usual care (EUC), consisting of team-based primary care with access to community health workers and mental health, addiction treatment, and pharmacy services, served as the comparator. Participants who received EUC joined the A-ICU intervention after 6 months. Main Outcomes and Measures: The main outcome was the difference in rates of hospitalization (primary outcome), emergency department (ED) visits, and primary care physician (PCP) visits per person over 6 months (vs the prior 6 months). Patient-reported outcomes included changes in patient activation, experience, health-related quality of life, and self-rated health at 6 months (vs baseline). We performed an intention-to-treat analysis using a linear mixed-effects model with a random intercept for each patient to examine the association between study group and outcomes. Results: This study randomized 159 participants (mean [SD] age, 54.9 [9.8] years) to the A-ICU SUMMIT intervention (n = 80) or to EUC (n = 79). The majority of participants were men (102 [65.8%]) and most were White (121 [76.1%]). A total of 64 participants (41.0%) reported having unstable housing at baseline. Six-month hospitalizations decreased in both the A-ICU and EUC groups, with no difference between them (mean [SE], -0.6 [0.5] vs -0.9 [0.5]; difference, 0.3 [95% CI, -1.0 to 1.5]). Emergency department use did not differ between groups (mean [SE], -2.0 [1.0] vs 0.9 [1.0] visits per person; difference, -1.1 [95% CI, -3.7 to 1.6]). Primary care physician visits increased in the A-ICU group (mean [SE], 4.2 [1.6] vs -2.0 [1.6] per person; difference, 6.1 [95% CI, 1.8 to 10.4]). Patients in the A-ICU group reported improved social functioning (mean [SE], 4.7 [2.0] vs -1.1 [2.0]; difference, 5.8 [95% CI, 0.3 to 11.2]) and self-rated health (mean [SE], 0.7 [0.3] vs -0.2 [0.3]; difference, 1.0 [95% CI, 0.1 to 1.8]) compared with patients in the EUC group. No differences in patient activation or experience were observed. Conclusions and Relevance: The A-ICU intervention did not change hospital or ED utilization at 6 months but increased PCP visits and improved patient well-being. Longer-term studies are needed to evaluate whether these observed improvements lead to eventual changes in acute care utilization. Trial Registration: ClinicalTrials.gov Identifier: NCT03224858.

Mindshift in autism: a call to professionals in research, clinical, and educational settings.

Autistic people often have poor outcomes over the life course, including in health, education, employment, and community inclusion. Many professionals working with Autistic adults in research, clinical, and educational settings devote their careers to trying to improve such outcomes. However, we maintain that real progress cannot happen without a fundamental mindshift. The status quo for professionals is to view autism as an illness. Instead, the neurodiversity movement encourages us to value and embrace autism as an aspect of human diversity and asks us to view Autistic people as a marginalized group that experiences significant disparities. While some professionals may be adopting language and concepts from the neurodiversity movement, we argue that making this mindshift fundamentally changes our practice across research, clinical, and educational settings. In this perspective, we call on professionals to embrace this mindshift to reduce discrimination and stigma, halt the spread of harmful ideologies, and help Autistic adults live fulfilling lives.

Patients' Willingness to Accept Social Needs Navigation After In-Person versus Remote Screening.

BACKGROUND: Social needs screening and referral interventions are increasingly common in health care settings. Although remote screening offers a potentially more practical alternative to traditional in-person screening, there is concern that screening patients remotely could adversely affect patient engagement, including interest in accepting social needs navigation. METHODS: We conducted a cross-sectional study using a multivariable logistic regression analysis and data from the Accountable Health Communities (AHC) model in Oregon. Participants were Medicare and Medicaid beneficiaries in the AHC model from October 2018 through December 2020. The outcome variable was patients' willingness to accept social needs navigation assistance. We included an interaction term (total number of social needs + screening mode) to test whether in-person versus remote screening was an effect modifier. RESULTS: The study included participants who screened positive for ≥1 social need(s); 43% were screened in person and 57% remotely. Overall, 71% of participants were willing to accept help with social needs. Neither screening mode nor interaction term were significantly associated with willingness to accept navigation assistance. CONCLUSIONS: Among patients presenting with similar numbers of social needs, results indicate that type of screening mode may not adversely affect patients' willingness to accept health care-based navigation for social needs.

Co-design of an NHS primary care health check for autistic adults.

LAY ABSTRACT: Autistic people are on average more likely to experience poor health than people who are not autistic. Health checks have been shown to improve access to effective healthcare. This study investigated people's views about a primary care health check for autistic adults. We held discussion groups and interviewed autistic adults, adults with intellectual disabilities, supporters and health professionals. People wanted the health check to look at a person's physical and mental health, and how they were doing socially. They thought people should be able to share information about their needs and the reasonable adjustments they would like before the health check. They wanted healthcare services to change the way they communicate with autistic people, such as being able to book appointments online rather than by telephone. They wanted a choice in how the health check was completed, with video call or email offered as well as face-to-face appointments. People thought further training of primary care staff on autism was needed, to increase awareness of the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently to non-autistic people. Clinicians raised questions about whether mental health and social care services could meet the additional needs that might be identified through the health check. We used this information to design an NHS primary care health check for autistic people in collaboration with autistic people, supporters and health professionals.

"[I] don't wanna just be like a cog in the machine": Narratives of autism and skilled employment.

LAY ABSTRACT: Autistic people are less likely to be employed than the general population. Autistic people with skilled training (e.g. training for jobs in acting, plumbing, science, or social work) might be even less likely to get a good job in their field. Little is known about the experiences of autistic people in skilled employment or what employment success means to them. We interviewed 45 autistic people with skilled training in a wide range of fields, 11 job supervisors, and 8 topic experts. We asked them about their experiences, what they felt helped them to be successful at work, and what employment success means to them. Participants talked about the high stakes of disclosure, taking unconventional pathways to careers, disconnects with service and support systems, mental health challenges from trauma and burnout, the autistic advantages in the workplace, and complex dimensions of discrimination. Participants said success meant opportunities for growth, good work/life balance, financial independence, sense of community, and feeling valued, accepted, and like their work had meaning. Things that helped them be successful included flexible, accepting workplaces, supportive and respectful supervisors, and direct communication. What we learned suggests that an individualized, wholistic approach to autism employment intervention that considers both employers and employees and employee mental health could be useful. We also recommend more research into disclosure and destigmatizing disability at work.

"It Made Me Feel like Things Are Starting to Change in Society:" A Qualitative Study to Foster Positive Patient Experiences during Phone-Based Social Needs Interventions.

Many healthcare organizations are screening patients for health-related social needs (HRSN) to improve healthcare quality and outcomes. Due to both the COVID-19 pandemic and limited time during clinical visits, much of this screening is now happening by phone. To promote healing and avoid harm, it is vital to understand patient experiences and recommendations regarding these activities. We conducted a pragmatic qualitative study with patients who had participated in a HRSN intervention. We applied maximum variation sampling, completed recruitment and interviews by phone, and carried out an inductive reflexive thematic analysis. From August to November 2021 we interviewed 34 patients, developed 6 themes, and used these themes to create a framework for generating positive patient experiences during phone-based HRSN interventions. First, we found patients were likely to have initial skepticism or reservations about the intervention. Second, we identified 4 positive intervention components regarding patient experience: transparency and respect for patient autonomy; kind demeanor; genuine intention to help; and attentiveness and responsiveness to patients' situations. Finally, we found patients could be left with feelings of appreciation or hope, regardless of whether they connected with HRSN resources. Healthcare organizations can incorporate our framework into trainings for team members carrying out phone-based HRSN interventions.

"All these people saved her life, but she needs me too": Understanding and responding to parental mental health in the NICU.

OBJECTIVE: To explore the mental health needs of parents of infants in a neonatal intensive care unit (NICU), as well as barriers and solutions to meeting these needs. DESIGN: Qualitative interviews conducted with parents and staff (n = 15) from a level IV NICU in the Northwestern United States. Thematic analysis completed using an inductive approach, at a semantic level. RESULTS: (1) Information and mental health needs change over time, (2) Staff-parent relationships buffer trauma and distress, (3) Lack of continuity of care impacts response to mental health concerns, (4) NICU has a critical role in addressing parental mental health. CONCLUSION: Mental health support should be embedded and tailored to the NICU trajectory, with special attention to the discharge transition, parents living in rural areas, and non-English-speaking parents. Research should address structural factors that may impact mental health such as integration of wholistic services, language barriers, and staff capacity.

Views about primary care health checks for autistic adults: UK survey findings.

BACKGROUND: Compared with the general population, autistic adults experience higher rates of physical and mental health conditions, premature morbidity and mortality, and barriers to health care. A health check for autistic people may improve their health outcomes. AIM: To establish the views of autistic people towards a primary care health check for autistic people. DESIGN & SETTING: Cross-sectional questionnaire study in England and Wales. METHOD: A questionnaire was sent to autistic adults with physical health conditions in England and Wales. A total of 458 people (441 autistic adults and 17 proxy responders) completed the questionnaire. RESULTS: Most responders (73.4%, n = 336) thought a health check is needed for all autistic people. Around half of the participants thought a health check should be offered from childhood and the health check appointment should last between 15 and 30 minutes. Autistic people were positive about providing primary care staff with contextual information regarding their health and the reasonable adjustments they would like before their health check appointment. Training about autism and the health check was considered important, alongside adequate time for discussions in the health check appointment (all by over 70% of responders). The clinician's autism knowledge, seeing a familiar clinician, environmental adaptations, appropriate information, and accessible appointments were considered particularly important in making a health check accessible. CONCLUSION: Autistic people and relatives were supportive of a primary care health check for autistic people. Information gathered was used to support the design of a primary care health check for autistic adults.

Assessing Student Readiness to Work with People Who Use Drugs: Development of a Multi-disciplinary Addiction Educational Survey.

BACKGROUND: As health profession schools implement addiction curricula, they need survey instruments to evaluate the impact of the educational interventions. However, existing measures do not use current non-stigmatizing language and fail to capture core concepts. OBJECTIVE: To develop a brief measure of health profession student readiness to work with people who use drugs (PWUDs) and establish its content validity. METHODS: We conducted a literature review of existing instruments and desired clinical competencies related to providing care to PWUD and used results and expert feedback to create and revise a pool of 72 items. We conducted cognitive interviews with ten pre-clinical health profession students from various US schools of nursing, pharmacy, and medicine to ensure the items were easy to understand. Finally, we used a modified Delphi process with twenty-four health professions educators and addiction experts (eight each from nursing, pharmacy, and medicine) to select items for inclusion in the final scale. We analyzed expert ratings of individual items and interdisciplinary agreement on ratings to decide how to prioritize items. We ultimately selected 12 attitudes and 12 confidence items to include in the REadiness to Discuss Use, Common Effects, and HArm Reduction Measure (REDUCE-HARM). Experts rated their overall assessment of the final scale. RESULTS: Twenty-two of twenty-four experts agreed or strongly agreed that the attitudes scale measures student attitudes that impact readiness to work with PWUDs. Twenty-three of twenty-four experts agreed or strongly agreed that the confidence scale measures student self-efficacy in competencies that impact readiness to work with PWUDs. Seven of 72 initial items and none of the 24 selected items had statistically significant differences between disciplines. CONCLUSIONS: The REDUCE-HARM instrument has strong content validity and may serve as a useful tool in evaluating addiction education. Additional research is needed to establish its reliability, construct validity, and responsiveness to change.

Social Needs Resource Connections: A Systematic Review of Barriers, Facilitators, and Evaluation.

INTRODUCTION: Healthcare organizations increasingly are screening patients for social needs (e.g., food, housing) and referring them to community resources. This systematic mixed studies review assesses how studies evaluate social needs resource connections and identifies patient- and caregiver-reported factors that may inhibit or facilitate resource connections. METHODS: Investigators searched PubMed and CINAHL for articles published from October 2015 to December 2020 and used dual review to determine inclusion based on a priori selection criteria. Data related to study design, setting, population of interest, intervention, and outcomes were abstracted. Articles' quality was assessed using the Mixed Methods Appraisal Tool. Data analysis was conducted in 2021. RESULTS: The search identified 34 articles from 32 studies. The authors created a taxonomy of quantitative resource connection measures with 4 categories: whether participants made contact with resources, received resources, had their social needs addressed, or rated some aspect of their experience with resources. Barriers to resource connections were inadequacy, irrelevancy, or restrictiveness; inaccessibility; fears surrounding stigma or discrimination; and factors related to staff training and resource information sharing. Facilitators were referrals' relevancy, the degree of support and simplicity embedded within the interventions, and interventions being comprehensive and inclusive. DISCUSSION: This synthesis of barriers and facilitators indicates areas where healthcare organizations may have agency to improve the efficacy of social needs screening and referral interventions. The authors also recommend that resource connection measures be explicitly defined and focus on whether participants received new resources and whether their social needs were addressed.

Creating academic-community partnerships to jointly enhance advocacy and research on violence and disability: Two case examples.

OBJECTIVE: This article describes the use of community-based participatory research (CBPR) to foster bidirectional and equitable academic-community partnerships in two studies related to interpersonal violence and disability. METHOD: We analyzed our methods and experiences in conducting these studies to focus on the ways in which CBPR methodology was used to jointly promote and enhance research and advocacy surrounding violence and disability in the research processes themselves and the resulting assessment and intervention products. RESULTS: Our use of CBPR methodology allowed us to identify and address critical issues related to violence in the disability community, such as disability-related forms and experiences of violence, concerns and barriers linked to mandated reporting laws, and inaccessible measures and interventions, and to address them in research products. Additionally, our bidirectional academic-community partnerships led us to address overall accessibility of the research process itself as a means by which to amplify advocate voices in science. CONCLUSIONS: Full, meaningful, and equitable participation of people with disabilities at every stage of the research process allows for the creation of partnerships that jointly advance research and advocacy around violence and disability. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Trust in Hospital Physicians Among Patients With Substance Use Disorder Referred to an Addiction Consult Service: A Mixed-methods Study.

BACKGROUND: Trust is essential in patient-physician relationships. Hospitalized patients with substance use disorders (SUDs) often experience stigma and trauma in the hospital, which can impede trust. Little research has explored the role of hospital-based addictions care in creating trusting relationships with patients with SUDs. This study describes how trust in physicians changed among hospitalized people with SUDs who were seen by an interprofessional addiction medicine service. METHODS: We analyzed data from hospitalized patients with SUD seen by an addiction consult service from 2015 to 2018. Participants completed surveys at baseline and 30 to 90 days after hospital discharge. Follow-up assessments included open-ended questions exploring participant experiences with hospitalization and the addiction consult service. We measured provider trust using the Wake Forest Trust scale. We modeled trust trajectories using discrete mixture modeling, and sampled qualitative interviews from those trust trajectories. RESULTS: Of 328 participants with SUD who had prior hospitalizations but had not previously been seen by an addiction consult service, 196 (59.8%) had both baseline and follow-up trust scores. We identified 3 groups of patients: Persistent-Low Trust, Increasing Trust, and Persistent-High Trust and 4 qualitative themes around in-hospital trust: humanizing care, demonstrating addiction expertise, reliability, and granting agency. CONCLUSIONS: Most participants retained or increased to high trust levels after hospitalization with an addiction consult service. Addiction consult services can create environments where healthcare providers build trust with, and humanize care for, hospitalized patients with SUD, and can also mitigate power struggles that hospitalized patients with SUD frequently experience.

"The SUMMIT Team is All I Got": perspectives of medically and socially complex patients seen in intensive primary care.

Context: There is great interest in intensive primary care (IPC) interventions to address the needs of medically and socially complex patients, however it is unknown how these interventions impact patient experience. Objective: Describe the experience of patients on the Streamlined Unified Meaningfully Managed Interdisciplinary Team (SUMMIT), an IPC for patients with complex needs at a federally qualified health center serving patients with high rates of homelessness. Study Design: Qualitative study using semi-structured interviews with 25 patients enrolled in the SUMMIT intervention. We conducted a thematic analysis using a hybrid inductive/deductive approach. Results: Prior to SUMMIT, patients often felt it was difficult to engage with the healthcare system, in part due to their complex medical conditions, but also factors including prior trauma, poverty, substance use, and providers' stigma. We identified four themes related to how and why patients felt SUMMIT improved their care: 1) Investment: Patients perceived the team as truly invested in them and expressed how the team walked side by side in their care journeys to overcome stigma, low-self efficacy, and prior negative experiences with the healthcare system 2) Family: Patients reported feeling a strong sense of family with SUMMIT team members and believed that the team had genuine duty and obligation toward them, interacting with them in a non-judgmental, culturally competent manner. 3) Feeling valued: Patients expressed that the team's flexible design, continuity of team membership, care coordination and addressing unmet needs and social determinants led them to feel valued and hope. 4) Evolution of self-efficacy: Patients experienced improved self-efficacy, and were able to engage with health care proactively, instead of avoiding care. Conclusion: Medically and socially complex patients experience trauma and stigma that shape perceptions of care. Patients appreciated humanizing interactions with team members along with the additional support SUMMIT provided to overcome barriers to care. They spoke of the team as family members who valued them and they recognized how the program had helped them take a more active role in improving their own health. Our findings suggest that effectiveness of IPC interventions may lie, in part, on the use of team members who have the skills and commitment to deliver non-judgemental, culturally competent, longitudinal relationship-focused care.

Understanding the impact of the SARS-COV-2 pandemic on hospitalized patients with substance use disorder.

BACKGROUND: The SARS-COV-2 pandemic rapidly shifted dynamics around hospitalization for many communities. This study aimed to evaluate how the pandemic altered the experience of healthcare, acute illness, and care transitions among hospitalized patients with substance use disorder (SUD). METHODS: We performed a qualitative study at an academic medical center in Portland, Oregon, in Spring 2020. We conducted semi-structured interviews, and conducted a thematic analysis, using an inductive approach, at a semantic level. RESULTS: We enrolled 27 participants, and identified four main themes: 1) shuttered community resources threatened patients' basic survival adaptations; 2) changes in outpatient care increased reliance on hospitals as safety nets; 3) hospital policy changes made staying in the hospital harder than usual; and, 4) care transitions out of the hospital were highly uncertain. DISCUSSION: Hospitalized adults with SUD were further marginalized during the SARS-COV-2 pandemic. Systems must address the needs of marginalized patients in future disruptive events.

Psychometric testing of a set of patient-reported instruments to assess healthcare interventions for autistic adults.

LAY ABSTRACT: Interventions to improve healthcare for autistic adults are greatly needed. To evaluate such interventions, researchers often use surveys to collect data from autistic adults (or sometimes, their supporters), but few survey measures have been tested for use with autistic adults. Our objective was to create and test a set of patient- or proxy-reported survey measures for use in studies that evaluate healthcare interventions. We used a community-based participatory research (CBPR) approach, in partnership with autistic adults, healthcare providers, and supporters. We worked together to create or adapt survey measures. Three survey measures focus on things that interventions may try to change directly: (1) how prepared patients are for visits; (2) how confident they feel in managing their health and healthcare; and (3) how well the healthcare system is making the accommodations patients feel they need. The other measures focus on the outcomes that interventions may hope to achieve: (4) improved patient-provider communication; (5) reduced barriers to care; and (6) reduced unmet healthcare needs. We then tested these measures in a survey of 244 autistic adults recruited from 12 primary care clinics in Oregon and California, USA (with 194 participating directly and 50 participating via a proxy reporter). Community partners made sure items were easy to understand and captured what was important about the underlying idea. We found the survey measures worked well in this sample. These measures may help researchers evaluate new healthcare interventions. Future research needs to assess whether interventions improve healthcare outcomes in autistic adults.

Development and psychometric testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale.

LAY ABSTRACT: The adult healthcare system is ill-prepared to provide high-quality care to autistic adults. Lack of provider training may contribute to the problem, but there are few previously tested survey instruments to guide provider training efforts. Our objective was to develop and test a measure of healthcare providers' confidence (or "self-efficacy") in providing healthcare to autistic adults and to use it to better understand their training needs. We used a community-based participatory research (CBPR) approach, in partnership with academic researchers, autistic adults, supporters, and healthcare providers, throughout the project. We developed a one-page questionnaire and surveyed 143 primary care providers from eight primary care clinics in Oregon and California, United States. Preliminary testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale suggests that the measure is reliable and valid. Using this scale, we found only a minority of providers reported high confidence in communicating with patients (25%); performing physical exams or procedures (43%); accurately diagnosing and treating other medical issues (40%); helping patients stay calm and comfortable during visits (38%); identifying accommodation needs (14%); and making necessary accommodations (16%). While providers need training across all aspects of care related to autism in adulthood, interventions should pay particular attention to helping providers communicate with patients, and identify and make necessary accommodations. Future research is needed to further validate this scale and to understand how to meet providers' training needs most effectively.

Patterns of substance use before and after hospitalization among patients seen by an inpatient addiction consult service: A latent transition analysis.

BACKGROUND AND AIMS: Polysubstance use is common and contributes to morbidity and mortality of hospitalized patients, and yet little is known about patterns of substance use among hospitalized patients, or how an addiction consult service (ACS) might impact polysubstance use after discharge. The objective of this study was to identify patterns of substance use at admission and after discharge among hospitalized patients with substance use disorders who saw an ACS. DESIGN: Prospective cohort study. We used latent transition analysis of substance use scores at the time of hospital admission and 30 to 90 days posthospitalization. SETTING: Single, academic health center with an ACS in Portland, Oregon, from 2015 to 2018. PARTICIPANTS/CASES: Patients were eligible if they received a consult to the inpatient ACS. MEASUREMENTS: We used Addiction Severity Index-Lite scores to capture self-reported substance use at baseline and follow-up for heroin, other opioid, alcohol, amphetamine, and cocaine. FINDINGS: From 2015 to 2018, 486 individuals consented to participate. More than half of patients used more than one substance at baseline. Of those reporting any baseline opioid use, nearly three-quarters (n=187, 69.5%) had polysubstance use in the previous 30 days, including alcohol (n=80, 29.7%), cocaine (n=25, 9.3%), or amphetamine use (n=142, 52.8%). We identified three patterns of substance use at baseline: 1) alcohol use dominant, 2) polysubstance use dominant, and 3) heroin and other opioid use dominant. Patients transitioned along five trajectories to three different follow-up profiles that showed lower endorsement of all substances used. Slightly more than 40% (40.1%) of patients newly endorsed abstinence of at least one substance at follow-up. CONCLUSIONS: Polysubstance use is common in hospitalized patients with substance use disorders and identifying patterns of polysubstance use can guide clinical management. Hospital providers should prepare to manage polysubstance use during hospitalization and hospitals should broaden care beyond interventions for opioid use disorder.

"Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew": Defining Autistic Burnout.

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, and examination of contradictions. Results: Autistic adults described the primary characteristics of autistic burnout as chronic exhaustion, loss of skills, and reduced tolerance to stimulus. They described burnout as happening because of life stressors that added to the cumulative load they experienced, and barriers to support that created an inability to obtain relief from the load. These pressures caused expectations to outweigh abilities resulting in autistic burnout. Autistic adults described negative impacts on their health, capacity for independent living, and quality of life, including suicidal behavior. They also discussed a lack of empathy from neurotypical people and described acceptance and social support, time off/reduced expectations, and doing things in an autistic way/unmasking as associated in their experiences with recovery from autistic burnout. Conclusions: Autistic burnout appears to be a phenomenon distinct from occupational burnout or clinical depression. Better understanding autistic burnout could lead to ways to recognize, relieve, or prevent it, including highlighting the potential dangers of teaching autistic people to mask or camouflage their autistic traits, and including burnout education in suicide prevention programs. These findings highlight the need to reduce discrimination and stigma related to autism and disability. LAY SUMMARY: Why was this study done?: Autistic burnout is talked about a lot by autistic people but has not been formally addressed by researchers. It is an important issue for the autistic community because it is described as leading to distress; loss of work, school, health, and quality of life; and even suicidal behavior.What was the purpose of this study?: This study aimed to characterize autistic burnout, understand what it is like, what people think causes it, and what helps people recover from or prevent it. It is a first step in starting to understand autistic burnout well enough to address it.What did the researchers do?: Our research group-the Academic Autism Spectrum Partnership in Research and Education-used a community-based participatory research approach with the autistic community in all stages of the study. We analyzed 9 interviews from our study on employment, 10 interviews about autistic burnout, and 19 public Internet sources (five in-depth). We recruited in the United States by publicizing on social media, by word of mouth, and through community connections. When analyzing interviews, we took what people said at face value and in deeper social context, and looked for strong themes across data.What were the results of the study?: The primary characteristics of autistic burnout were chronic exhaustion, loss of skills, and reduced tolerance to stimulus. Participants described burnout as happening because of life stressors that added to the cumulative load they experienced, and barriers to support that created an inability to obtain relief from the load. These pressures caused expectations to outweigh abilities resulting in autistic burnout. From this we created a definition:Autistic burnout is a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterized by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus.Participants described negative impacts on their lives, including health, capacity for independent living, and quality of life, including suicidal behavior. They also discussed a lack of empathy from neurotypical people. People had ideas for recovering from autistic burnout including acceptance and social support, time off/reduced expectations, and doing things in an autistic way/unmasking.How do these findings add to what was already known?: We now have data that autistic burnout refers to a clear set of characteristics, and is different from workplace burnout and clinical depression. We have the start of a model for why autistic burnout might happen. We know that people have been able to recover from autistic burnout and have some insights into how.What are the potential weaknesses in the study?: This was a small exploratory study with a convenience sample. Although we were able to bring in some diversity by using three data sources, future work would benefit from interviewing a wider range of participants, especially those who are not white, have higher support needs, and have either very high or very low educational attainment. More research is needed to understand how to measure, prevent, and treat autistic burnout.How will these findings help autistic adults now or in the future?: These findings validate the experience of autistic adults. Understanding autistic burnout could lead to ways to help relieve it or prevent it. The findings may help therapists and other practitioners recognize autistic burnout, and the potential dangers of teaching autistic people to mask autistic traits. Suicide prevention programs should consider the potential role of burnout. These findings highlight the need to reduce discrimination and stigma around autism and disability.