A Call-In for Allyship and Anti-Ableism in Intellectual Disability Research.

Provoked by decades of grassroots activism, anti-ableist work is underway to advance disability rights. Intellectual disability (ID) researchers can integrate these social changes into their work by interrogating and transforming the beliefs and practices that underpin ID research. We share actionable ideas to foster anti-ableism and allyship in ID research. These include: (1) Learn from and nurture long-term, mutual relationships with people with ID; (2) Amplify the voices of people with ID in institutional structures that influence research; (3) Infuse anti-ableist frameworks into our own research; and (4) Embody a career-long commitment to disability rights, reflexive practice, and growth.

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.

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' 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.

Centering the Inner Experience of Autism: Development of the Self-Assessment of Autistic Traits.

Current tools for identifying autism are critiqued for their lack of specificity and sensitivity, especially in autistic people who are older, have higher verbal ability or significant compensatory skills, and are not cisgender boys. This may reflect the following: the historical focus of autism research on White (cisgender) male, upper and middle class children; limited interest in the inner, lived experience of autism; and the predominance of a deficit-based model of autism. We report here on the first attempt of which we are aware to develop a clinical self-report measure of autistic traits as described by autistic people. We believe this is an advance in methodology because prior work in the development of autistic trait/diagnostic measures has prioritized the perspectives of nonautistic clinicians and scientists. The measure was developed under the leadership of two autistic researchers and constructed by leveraging descriptions of autism by autistic people to generate items designed to encompass the range of the autistic experience, using strength-based, accessible language. The team utilized iterative feedback from a panel of autistic experts to refine and enhance the measure, called the Self Assessment of Autistic Traits (SAAT). It is intended for people 16 years or older and uses a format that is designed to increase its accessibility and acceptability for autistic respondents. Future work will report on the preliminary psychometrics of the SAAT, with a long-term goal of advancing our understanding of the inner autistic experience and enhancing the clinical and scientific assessment of autism.

Why is this topic important?: Some people, especially older people, and those who can "mask" their autism, are missed by the current autism assessment tools. This can keep them from getting supports or getting connected to autistic communities. This can harm their well-being and independence. The tools we currently have to assess autism are important, but they were not developed with people who represent the full range of genders, ages, abilities, and cultural identities that characterize autism. Furthermore, current tools emphasize behaviors that other people observe, for example, making eye contact, and do not fully explore the lived or inner experience of autism. What is the purpose of this article?: This article describes the first attempt we know of to begin developing a self-report measure of autistic traits as described by autistic people. What did the authors do?: The authors started by reading what autistic people had to say about autism. They used those readings to come up with initial ideas about autistic experience. Then they used those ideas to write questions for a questionnaire about autistic traits. They asked autistic experts to review the questionnaire and made changes based on what they said. How did the authors work together?: This project was led by two autistic researchers who worked with a team of nonautistic researchers experienced in different research methods. A panel of autistic experts, including both autistic scientist and community leaders, also provided important input. Some of those methods were community-based research, Delphi panels, cognitive interviewing, and measure development. The research team made decisions together. The autistic researchers made the final decisions if there was disagreement. What did they produce?: They produced a preliminary version of the Self Assessment of Autistic Traits (SAAT). The SAAT is a questionnaire that asks if a person has common autistic experiences and traits. It has 58 items that are written with the aim of being respectful and using accessible language. The questionnaire is designed to work with common autistic thinking styles. How will this help autistic adults now or in the future?: The long-term goal is to create a reliable and valid self-report questionnaire that people 16 years old and older can complete to measure their autistic traits. We believe that this could be an important tool for advancing our understanding of the inner autistic experience of autism. This could improve how we assess autistic adults and how we research and think about autism.

"[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.

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.

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.

"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.

Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability: Lessons Learned and Recommendations.

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 phrases; (3) imprecise response options; (4) variation in item response based on different contexts; (5) anxiety related to not being able to answer with full accuracy; (6) lack of items to fully capture the autism-specific aspects of a construct; and (7) ableist language or concepts. Common adaptations included: (1) adding prefaces to increase precision or explain context; (2) modifying items to simplify sentence structure; (3) substituting difficult vocabulary words, confusing terms, or figures of speech with more straightforward terms; (4) adding hotlinks that define problematic terms or offer examples or clarifications; (5) adding graphics to increase clarity of response options; and (6) adding new items related to autism-specific aspects of the construct. We caution against using instruments developed for other populations unless instruments are carefully tested with autistic adults, and we describe one possible approach to ensure that instruments are accessible to a wide range of autistic participants. LAY SUMMARY: Why is this topic important?: To understand what can improve the lives of autistic adults, researchers need to collect survey data directly from autistic adults. However, most survey instruments were made for the general population and may or may not work well for autistic adults.What is the purpose of this article?: To use lessons learned from our experience adapting surveys-in partnership with autistic adults-to create a set of recommendations for how researchers may adapt instruments to be accessible to autistic adults.What did the authors do?: Between 2006 and 2019, the Academic Autism Spectrum Partnership in Research and Education (AASPIRE) and the Partnering with People with Developmental Disabilities to Address Violence Consortium used a participatory research approach to adapt many survey instruments for use in six separate studies. We reviewed records from these partnerships and identified important lessons.What is this recommended adaptation process like?: The adaptation process includes the following: (1) Co-creating collaboration guidelines and providing community partners with necessary background about terminology and processes used in survey research; (2) Collaboratively selecting which constructs to measure; (3) Discussing each construct so that we can have a shared understanding of what it means; (4) Identifying existing instruments for each construct; (5) Selecting among available instruments (or deciding that none are acceptable and that we need to create a new measure); (6) Assessing the necessary adaptations for each instrument; (7) Collaboratively modifying prefaces, items, or response options, as needed; (8) Adding "hotlink" definitions where necessary to clarify or provide examples of terms and constructs; (9) Creating new measures, when needed, in partnership with autistic adults;(10)Considering the appropriateness of creating proxy report versions of each adapted measure; and(11)Assessing the adapted instruments' psychometric properties.What were common concerns about existing instruments?: Partners often said that, if taking a survey that used the original instruments, they would experience confusion, frustration, anxiety, or anger. They repeatedly stated that, faced with such measures, they would offer unreliable answers, leave items blank, or just stop participating in the study. Common concerns included the use of difficult vocabulary, confusing terms, complex sentence structure, convoluted phrasings, figures of speech, or imprecise language. Partners struggled with response options that used vague terms. They also felt anxious if their answer might not be completely accurate or if their responses could vary in different situations. Often the surveys did not completely capture the intended idea. Sometimes, instruments used offensive language or ideas. And in some cases, there just were not any instruments to measure what they thought was important.What were common adaptations?: Common adaptations included: (1) adding prefaces to increase precision or explain context; (2) modifying items to simplify sentence structure; (3) substituting difficult vocabulary words, confusing terms, or figures of speech with more straightforward terms; (4) adding hotlinks that define problematic terms or offer examples or clarifications; (5) adding graphics to increase clarity of response options; and (6) adding new items related to autism-specific aspects of the construct.How will this article help autistic adults now or in the future?: We hope that this article encourages researchers to collaborate with autistic adults to create better survey instruments. That way, when researchers evaluate interventions and services, they can have the right tools to see if they are effective.

Early Assessment and Support Alliance Connections: Community-Based Participatory Research to Develop a Peer-based Early Psychosis Web Resource with Young Adults.

BACKGROUND: Young adults (YA) who have experienced early psychosis (EP) have valuable information about their recovery process yet are often left out of research. OBJECTIVES: 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, webbased, recovery resource. METHODS: We used our CBPR process to collaboratively develop the resource and conducted an iterative usability study to test and refine it. LESSONS LEARNED: 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. CONCLUSIONS: Peer involvement in intervention development may increase usability. It benefits YA and adult coresearchers. We strongly recommend including YA who have experienced EP as co-researchers.

Development of the AASPIRE Web Accessibility Guidelines for Autistic Web Users.

Websites figure predominantly in everyday life. However, many websites remain inaccessible to autistic people, and existing efforts to improve accessibility are in early stages, do not directly include autistic users in their development, or have not been empirically evaluated. The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) used a community-based participatory research approach to create a website to improve health care access for autistic adults. We used the creation of that website as a "living laboratory" to develop the AASPIRE Web Accessibility Guidelines for Autistic Web Users. Our guidelines are grounded in accessibility theory, had autistic end-user involvement at all stages, and were empirically evaluated through a usability study and evaluation surveys. We incorporated what we learned into the design of the website, and compiled the accessibility information into a set of guidelines. The guidelines offer recommendations for increasing the physical, intellectual, and social acceptability of websites for use by autistic adults. In the evaluation of the website by 170 autistic end users, nearly all indicated it was easy to use (97%), easy to understand (95%), important (97%), and useful (96%). Ninety-two percent would recommend it to a friend, and 95% would recommend it to a health care provider. There were no significant associations between usability or understandability and education level, receipt of help using the site, browser type (e.g., IE or Safari), or device type (e.g., PC or tablet). We recommend using the guidelines to improve website accessibility for autistic Internet users. LAY SUMMARY: AASPIRE Web Accessibility Guideline: This guideline is a summary of the accessibility features we identified and implemented during the course of our study. None of these items were difficult or expensive for us to implement. They did not require special expertise beyond basic web programming and technical communications skills. We recommend that anyone seeking to create accessible websites for autistic users follow the Academic Autism Spectrum Partnership in Research and Education (AASPIRE) Web Accessibility Guideline in addition to broader web and communications standards and principles.Physical accessibility:Provide at least one low-contrast neutral color palette option to accommodate sensitive vision.Provide a selection of color palettes, including one with a dark background and one with a light background, again to accommodate color and contrast sensitivity.Provide a no-style option (i.e., no cascading style sheets (CSS) to accommodate browser customization and users who prefer no stylistic formatting.Provide simple consistent navigation and highly consistent site behavior for increased ease of operation.Avoid textured backgrounds, moving images, decorative elements that do not convey information, and other visual and/or sonic "clutter"; these types of elements may make the site difficult or impossible to comprehend.Provide smaller font sizes in addition to larger ones; large font sizes may make the page appear cluttered and difficult to read.Use a plain accessible sans-serif font (e.g., Arial) for ease of readability.Intellectual accessibility:Use the simplest interface possible for ease of understanding.Use simple concrete icons or images to communicate redundant information with text, and accommodate multiple ways of understanding information.Clearly label site elements with their purpose everywhere on the site, even if it seems redundant, to make navigation and site functionality easier to follow.Provide concrete examples where applicable to accommodate difficulties in understanding abstractions or generalizations.Minimize scrolling so the user does not need to rely on assumptions about content to guess what might be on the page.Show all important features and site navigation (as opposed to within combo box drop-down areas) so the user does not need to rely on assumptions to guess whether the item exists and how to access it. For example, completely visible list boxes or radio buttons can be used instead of combo boxes.Make content as short as possible without sacrificing precision and specificity, to reduce cognitive burden.Social accessibility:Be specific and precise in language use; avoid colloquialisms, idioms, and ambiguity to accommodate difficulties with language pragmatics.Explain the reason behind any nonstandard instructions or unusual information; provide additional pragmatic context to accommodate difficulties with language pragmatics.Provide alternatives to definitive response items on surveys and forms, for example, "do not know," "do not wish to say," or "not applicable," to reduce frustration for not being able to produce an exact answer.Use FAQ formats to organize complex information to enhance clarity as to why the information might be useful to the user and how it connects to their life.Define terms that might have different meanings depending on social context, or which might be jargon related to a specialized field (e.g., "drug interactions" and "health care providers"), to accommodate difficulties with language pragmatics.Be mindful of autistic culture and community preferences, including the language used to describe autism and how community-based symbols and history might influence content and perception of site credibility.

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.

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.

Intersections of Critical Systems Thinking and Community Based Participatory Research: A Learning Organization Example with the Autistic Community.

Critical systems thinking (CST) and community based participatory research (CBPR) are distinct approaches to inquiry which share a primary commitment to holism and human emancipation, as well as common grounding in critical theory and emancipatory and pragmatic philosophy. This paper explores their intersections and complements on a historical, philosophical, and theoretical level, and then proposes a hybrid approach achieved by applying CBPR's principles and considerations for operationalizing emancipatory practice to traditional systems thinking frameworks and practices. This hybrid approach is illustrated in practice with examples drawn from of the implementation of the learning organization model in an action research setting with the Autistic community. Our experience of being able to actively attend to, and continuously equalize, power relations within an organizational framework that otherwise has great potential for reinforcing power inequity suggests CBPR's principles and considerations for operationalizing emancipatory practice could be useful in CST settings, and CST's vocabulary, methods, and clarity around systems thinking concepts could be valuable to CBPR practioners.

"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.