A Systematic Narrative Review of Implementation, Processes, and Outcomes of Human Library.

First started in Denmark in 2000, Human Library (HL) has been adopted by different communities around the world. It is an innovative approach that engages "readers" from the general public to have collaborative conversations with "books" from minority or marginalized communities to learn about their lived experiences and reduce public stigma and stereotypes. While the HL is popularized, its research base and implementation structure remain limited. This systematic narrative review aims to review the HL literature to (1) summarize the design, implementation, processes, and outcomes of existing HL programs and (2) synthesize recommendations for future implementation of more effective, ethical, and sensible HL. A systematic search in eight electronic databases yielded 23 journal articles and book chapters about HL published from 2010 to 2022. The identified literature demonstrated variations in format, venue, scale, preparation, and recruitment. A wide range of books with different social identities and from different cultural groups were reported, while readers were mostly from university and school communities. Reduced prejudices and improved attitudes were reported in readers, while both readers and books reported various facets of personal growth. Future HL using implementation guidelines with clearly articulate ethical considerations and diverse rigorous research methodologies are recommended.

A Critical Review of Academic Literature Constructing Well-Being in Autistic Adults.

The emergence of critical autism studies has fueled efforts to interrogate how autistic people are studied and described in academic literature. While there is a call for research that promotes better well-being for autistic people, little attention has been paid to the concept of well-being itself. Just as the medical model limits critical understandings of autism in the academic literature, so too may psychological accounts of well-being limit, rather than expand, possibilities of living a good life for autistic people. The purpose of this critical review was to identify and critique how well-being in autistic adults is constructed in research. Based on a systematic search of peer-reviewed empirical research published from 2013 to 2020, we identified 63 articles that involved direct data collection with autistic adults and focused on well-being constructs such as quality of life, life satisfaction, and happiness. We examined the articles using the techniques of critical discourse analysis to discern assumptions underlying constructions of autistic well-being, with special attention to the axiological and teleological contributions of autistic perspectives in the research and writing processes. We identified several approaches through which the literature constructed autistic well-being: (1) well-being as an objective uncontested variable, (2) well-being as personal and not fixed, (3) well-being that warrants a specific measure for the autistic population, and (4) well-being as a situated account that privileges and centers autistic people's perspectives. We subject these accounts to critical analysis, pointing to how they limit and open life possibilities for autistic people. We recommend that researchers and practitioners critically reflect on how they engage autistic adults and use their input to create works that support well-being in ways that are meaningful and ethical to autistic adults, as well as do justice to changing broader narratives of autism in research and society. Lay summary: Why was this study done?: More autistic people and researchers have advocated to study autism in critical and positive ways. While it is important to promote better well-being for autistic people, little is known about what well-being actually means to them.What was the purpose of this study?: The purpose of our critical review was to identify how the concept of well-being in autistic people is understood and described in academic literature. We also critiqued how well-being research considers the input and perspectives of autistic adults.What did we do?: We systematically searched for research articles published between 2013 and 2020. We identified 63 articles that involved direct data collection with autistic adults and focused on well-being and related concepts such as quality of life, life satisfaction, and happiness. We analyzed the articles by focusing on how they used language to describe well-being in autistic adults and how they valued the data collected from these adults.What did we find?: We identified several ways that article authors described their understanding of autistic well-being: (1) well-being as an objective and uncontested object, (2) well-being is personal and can vary in nature, (3) well-being warrants a measure that considers opinions of autistic people, and (4) well-being as very specific to autistic people's subjective perspectives. We critically analyzed how these different understandings limit or open life possibilities for autistic people's well-being.How will this work help autistic people?: We recommend that researchers critically reflect on how they engage autistic adults and use their input in research. Promoting well-being needs to be meaningful and ethical to autistic adults. Research also needs to advocate for social justice to challenge how the majority in society understands or misunderstands autistic people.

"Different but connected": Participatory action research using Photovoice to explore well-being in autistic young adults.

LAY ABSTRACT: Past research has mainly focused on autistic people's deficits and poor outcomes compared to other groups of people. Little is known about their positive life experiences, and how to support them to achieve a higher quality of life. It is important to include autistic individuals in research so that they can influence how their voices are represented in a meaningful way and how the research results will be useful to them. In this study, a university researcher collaborated with 14 autistic young adults in a post-school transition program to design and run the research, collect and analyze the data, and use the results to create a presentation to the community. Specifically, the participants took photos in daily life and discussed their ideas about what a good life means to them. Results showed that these young adults described themselves as uniquely and different, but they were eager to learn and adapt. They also valued their relationships with their families, friends, and animals around them, as well as the community at large. This research shows that autistic individuals have important perspectives to share and knowledge to contribute when they are given the opportunities to participate in different aspects of research. The findings will be useful in developing services and influencing policies that promote well-being among autistic adults.

Meaning in Measurement: Evaluating Young Autistic Adults' Active Engagement and Expressed Interest in Quality-of-Life Goals.

The need for support programs and meaningful measurement of outcomes with autistic adults is growing. To date, success in autism intervention has been defined based on changes in discretely defined, observable behaviors with limited consideration of the person's experience, motivations, or the complex contexts in which these skills are used. Behavioral skill-building interventions are effective at increasing or decreasing specific behaviors, but a purely behavioral focus is not enough for meaningful improvements in adult quality of life (QoL). To reflect real-life impact, intervention and measurement must go beyond quantitative estimates of changes in skills regardless of context of use and focus on enhancing and evaluating functional outcomes and adult QoL that includes active engagement with the adult and provides rigor in qualitative evaluation. This article reports on efforts to assess active engagement of verbally fluent young autistic adults in a supported university-based residential pilot program built around self-set wellness goals for healthy, engaged, responsible, and empowered adult living. Program evaluation used an exploratory process for evaluating QoL learning, while also being open to how future work can discern participant meanings in measurement. The pilot used a mixed-methods approach to measure entry skills and interests, codetermine personal wellness goals, inform program content with participants, and measure QoL learning in terms of active engagement, expressed interest, and changes in self-appraisal of competence, confidence, and identity. Participants' QoL learning, replication of QoL learning measurement methods, and further exploration of strategies to put participant meanings in QoL learning measurement are discussed. Lay summary: Why was this study done?: This study piloted a measurement strategy for deciding what to measure and support in real-world contexts of independent living and on-campus experiences in a 3-week residential program for young autistic adults.What was the purpose of this study?: The study aimed to measure and support autistic adults' quality of life (QoL) learning in terms of the extent to which pursuing self-set wellness goals, with supports, positively impacted autistic adults' active engagement (e.g., participation in wellness activities), and expressed interest (e.g., willingness to participate).Why was this program developed?: The program was developed because more young adults on the spectrum are aging into adulthood without personalized, respectful, and meaningful supports to promote engaged adult living. We wanted to build on our experience and feedback from autistic adults, family, and partners who have engaged in weekly social engagement groups on a university campus and called for more comprehensive transition programs.What did the program do?: The project was a pilot of an on-campus program aimed at facilitating personally meaningful improvements in QoL through empowering autistic adults to act on their personal motivations, interests, and goals. It also emphasized learning through experiences in real-life contexts, in collaboration with other participants, campus resources, community members, and program staff.How did the researchers evaluate the new program?: The program team used both quantitative and qualitative methods. Quantitative methods included standard self-report tools that autistic adults used to rate their safety needs, adult self-direction skills, autism-related self-concept, priority of self-set wellness goals, and confidence in abilities to achieve and learn more about one's own wellness goals. Predetermined qualitative methods included analysis of themes from participants' narrative data from their wellness interviews with participants and open-response items from self-report tools. The program was also responsive through a preprogram wellness interview with parents, staff's field notes about of participants' behaviors, conversational interactions with participants, and team discussions. Researchers contextualized and synthesized the data into narrative case studies about each participant's wellness journey.What were the early findings and what do they add to what was already known?: Results showed that the program was able to facilitate participants' QoL learning in personal wellness goals in collaboration with campus and community resources. Participants expressed meaningful changes in their expressed interests, active engagement, and self-concept through participating in this brief residential on-campus program.What are potential weaknesses of this pilot?: Weaknesses included a short time period of 3 weeks, a small participant count of 5, and the resource-intense supports needed for the program.What are the next steps?: The next steps are to adjust the program based on participant feedback and pursue creation of a multiyear program to continue piloting the measurement and support strategies for facilitating autistic adults' active wellness engagement and self-determined independent living.How will these findings and this work help autistic adults now or in the future?: This work informs future wellness interventions for measuring and supporting autistic adults' efforts to self-determine meaningful changes to their QoL.