“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

I didn\u27t want to say it\u27s a bad thing : Supporter Experiences with Autistic Patients in Healthcare

Background Due to the characteristic traits associated with autism, many autistic adults need the help of a supporter during healthcare events. No research has been done on the supporters of autistic adults and how they are making meaning from their experiences. Objective Investigating the experience of the supporters’ navigating negative healthcare events while supporting an autistic adult will assist in filling the gap and focus my research. Method I partnered with the community based participatory research (CBPR) group the Academic Autism Partnership in Research and Education (AASPIRE) and used a CBPR approach to conduct a qualitative latent thematic analysis. I extracted 16 semi-structured and open-ended supporter stories about negative experiences in healthcare settings from larger interviews, and analyzed them at a latent level. Triangulation verification was used as an inclusive CBPR process and involved three AASPIRE partners. Results We used 16 semi-structured interviews with supporter participants who had experience supporting autistic adults in healthcare settings. Latent themes extracted from supporter responses included the supporter advocating for the patient, the supporter knowing the patient, and the supporter minimization of the negative healthcare experience. Interplay between the themes led to discussion with AASPIRE community partners regarding the deficit framework the medical model takes on disability. Conclusion The presence of advocation for and knowing the patient on an intimate level influenced the frequency of minimization within the negative event. Minimization is a coping mechanism used to downplay negative affect or feelings of being overwhelmed. The medical model may be a driving force behind the use of minimization as a technique of reducing negative affect when coupled with the practice of dehumanization. Paid disability support staff should be required to become familiar with the autistic adult patient’s medical history and accommodations prior to the healthcare appointment. This allows for the supporter to know the patient and better advocate for them

EASA Connections: Community-Based Participatory Research to Develop a Peer-Based Early Psychosis Web Resource With Young Adults

Young adults (YA) who have experienced early psychosis (EP) have valuable information about their recovery process yet are often left out of research. We used a community-based participatory research (CBPR) approach in partnership with the Early Assessment and Support Alliance (EASA) EP program and Portland State University to develop a peer-driven, web-based, recovery resource.We used our CBPR process to collaboratively develop the resource and conducted an iterative usability study to test and refine it. The resource was well-received and accessible. YA partners emphasize the importance of being prepared to learn about research and one’s self, being open to new experiences, and how being co-researchers can help with processing EP experiences for the benefit of one’s self and peers. Peer involvement in intervention development may increase usability. It benefits YA and adult co-researchers. We strongly recommend including YA who have experienced EP as co-researchers

Community-Based Participatory Research to Improve Alumni Transition from an Intensive Research Training Program for Historically Underrepresented Undergraduates

Various initiatives for undergraduates from historically underrepresented backgrounds attempt to address disparities in the completion of science, technology, engineering, mathematics (STEM) degrees and the pursuit of careers in scientific research. Intensive research training programs for historically underrepresented undergraduates may include multiple components, such as authentic research experiences, advising and mentoring, supplemental curriculum, and financial assistance. Following comprehensive support during program participation, the post-program transition may present a vulnerable period in students\u27 career trajectories. This study used a community-based participatory research (CBPR) approach to investigate the experiences of students completing an intensive research training program to understand and develop recommendations for the post-program transition process. As a team of program alumni, academic researchers, and program staff, we developed, conducted, and analyzed semi-structured, open-ended interviews of recent program alumni and students approaching program completion (n=11; 55% female, 55% non-White). Applying thematic analysis at semantic and latent levels through a critical paradigm revealed the transition as a bittersweet experience, with feelings of pride and accomplishment mixed with sadness and anxiety. Findings also suggested the transition is described as a narrative influenced by preceding program experiences and adaptations. Financial concerns were prominent, and specific barriers and facilitators of successful transition included: aligned mentoring, negotiation of continued research employment, consideration of culture, planning for next steps, and engagement with the scholar community. Collaboratively, we developed recommendations for program improvements potentially relevant to similarly intensive STEM diversity programs. We also highlight the value of a CBPR approach that includes students equitably as co-researchers in program research and evaluation

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

Psychometric Testing of Patient-Reported Instruments to Assess Healthcare Interventions for Autistic Adults

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 50 participating via a proxy reporter). Community partners ensured items were easy to understand and captured the intended construct. The AASPIRE Visit Preparedness Scale (VPS-6), Healthcare Accommodations Scale (HAS-8), and Patient-Provider Communication Scale (PPCS-8) were each found to have a single factor. The AASPIRE Health and Healthcare Self-Efficacy Scale (HHSE-21) had two factors: Individual Healthcare Self-Efficacy and Relationship-Dependent Healthcare Self-Efficacy. Both patient- and proxy-report versions of all scales had good to excellent internal consistency reliability, with alphas ranging from 0.81 to 0.96. The scales were associated with the Barriers to Healthcare Checklist and the Unmet Healthcare Needs Checklist in the hypothesized directions

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

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