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Exploring the "Freedom to be Me" through Design Sprints with Neurodivergent Scholars
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Introduction:
The current study explored whether camouflaging autistic traits is associated with defeat and entrapment and lifetime suicidal thoughts, as predicted by the Integrated Volitional Model of Suicide (IMV model).
Methods:
180 UK undergraduate students (76.7% female 18-67 years) completed a cross-sectional online survey from February 5 to March 23, 2020, including self-report measures of defeat and entrapment (SDES), autistic traits (AQ-10), depression (PHQ-9), anxiety (GAD-7), camouflaging autistic traits (CAT-Q), and lifetime suicidal thoughts and behaviors (SBQ-R item 1).
Results:
After controlling for age, gender, current depression, and anxiety symptoms, autistic traits accounted for significantly more of the variance in defeat and entrapment (1.1%), and camouflaging accounted for a further 3.2% of the variance. The association between autistic traits and lifetime suicidality was significantly mediated by camouflaging, defeat, and entrapment. After controlling for age, gender, current depression, and anxiety symptoms, defeat and entrapment (but not camouflaging) accounted for significantly more variance in lifetime suicidal thoughts. The interaction between camouflaging, defeat and entrapment predicted significantly less variance in lifetime suicidal thoughts than either variable alone.
Conclusion:
Results suggest that camouflaging autistic traits is a transdiagnostic risk factor for lifetime suicidality, relevant to the defeat and entrapment constructs of the IMV model.
Background
Stigma toward people with mental illness presents serious consequences for the impacted individuals, such as social exclusion and increased difficulties in the recovery process. Recently, several interventions have been developed to mitigate public stigma, based on the use of innovative technologies, such as virtual reality and video games.
Objective
This review aims to systematically review, synthesize, measure, and critically discuss experimental studies that measure the effect of technological interventions on stigmatization levels.
Methods
This systematic review and meta-analysis was based on PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-analyses) guidelines and included studies in English and Spanish published between 2016 and 2021. Searches were run in 5 different databases (ie, PubMed, PsycInfo, Scopus, Cochrane Library, and ScienceDirect). Only randomized controlled trials were included. Two independent reviewers determined the eligibility, extracted data, and rated methodological quality of the studies. Meta-analyses were performed using the Comprehensive Meta-Analysis software.
ResultsBased on the 1158 articles screened, 72 articles were evaluated as full text, of which 9 were included in the qualitative and quantitative syntheses. A diversity of interventions was observed, including video games, audiovisual simulation of hallucinations, virtual reality, and electronic contact with mental health services users. The meta-analysis (n=1832 participants) demonstrated that these interventions had a consistent medium effect on reducing the level of public stigma (d=–0.64; 95% CI 0.31-0.96; P
This article outlines the origin and evolution of one of the most influential design thinking perspectives in the Innovation Management discourse. This study addresses two significant criticisms of design thinking, namely, theoretical grounding and construct clarity. It also illustrates how this humanistic and creative design practice transcended into a comprehensive Innovation Management approach, facilitating entrepreneurship and innovation. Our research analyzes the evolution of the design philosophy and practices developed at Stanford University from 1957 to 2005 through document analysis. We identified design qualities that have been consistent over the decades, providing further construct clarity and insights on managing Design-driven Innovation. These design qualities elucidate design thinking as a cognitive process, creative practice, organizational routine, and design culture. They emphasize finding profound needs and problems and translate them into tangible designs, creating value for people. This design philosophy is deeply rooted in humanistic psychology theories, particularly on creativity and human values. Collaborations between psychologists, industrial researchers, and designers created this creative and human-centered design approach, known today as design thinking. This value-driven innovation offers a humanistic perspective on innovation theory and practice. It also offers an Innovation Management schema of design qualities essential for developing Design-driven Innovation capabilities in organizations and educational institutions. We emphasize that developing a creative design culture in which people have the human values, abilities, and confidence to collaboratively identify continuous emerging problems and needs and contribute through tangible designs generates an era of innovation and is essentially innovation management.
Background:
There are high rates of mental health needs in children in the United Kingdom, and parents are increasingly seeking help for their children's needs. However, there is not enough access to child and adolescent mental health services and parents are seeking alternative forms of support and information, often from web-based sources. Mumsnet is the largest web-based parenting forum in the United Kingdom, which includes user-created discussions regarding child mental health.
Objective:
This qualitative investigation aimed to explore the emergent themes within the narratives of posts regarding child mental health on Mumsnet and to extrapolate these themes to understand the purpose of Mumsnet for parents of children and young people with mental health needs.
Methods:
A total of 50 threads from Mumsnet Talk Child Mental Health were extracted. Following the application of inclusion and exclusion criteria, 41 threads were analyzed thematically using the framework approach, a form of qualitative thematic analysis.
Results:
In total, 28 themes were extracted and organized into 3 domains. These domains were emotional support, emotional expression, and advice and information. The results suggested that parents of children with mental health needs predominantly use Mumsnet to offer and receive emotional support and to suggest general advice, techniques, and resources that could be applied outside of help from professional services.
Conclusions:
This paper discusses the future of health information seeking. Future research is required to establish initiatives in which web-based peer-to-peer support and information can supplement professional services to provide optimum support for parents of children with mental health needs.
Having a purpose in life is one of the most fundamental human needs. However, for most people, finding their purpose in life is not obvious. Modern life has a way of distracting people from their true goals and many people find it hard to define their purpose in life. Especially at younger ages, people are searching for meaning in life, but this has been found to be unrelated to actually finding meaning. Oftentimes, people experience pressure to have a “perfect” life and show the world how well they are doing, instead of following up on their deep-felt values and passions. Consequently, people may need a more structured way of finding meaning, e.g., via an intervention. In this paper, we discuss evidence-based ways of finding purpose, via a process that we call “life crafting.” This process fits within positive psychology and the salutogenesis framework – an approach focusing on factors that support human health and well-being, instead of factors that cause disease. This process ideally starts with an intervention that entails a combination of reflecting on one’s values, passions and goals, best possible self, goal attainment plans, and other positive psychology intervention techniques. Important elements of such an intervention are: (1) discovering values and passion, (2) reflecting on current and desired competencies and habits, (3) reflecting on present and future social life, (4) reflecting on a possible future career, (5) writing about the ideal future, (6) writing down specific goal attainment and “if-then” plans, and (7) making public commitments to the goals set. Prior research has shown that personal goal setting and goal attainment plans help people gain a direction or a sense of purpose in life. Research findings from the field of positive psychology, such as salutogenesis, implementation intentions, value congruence, broaden-and-build, and goal-setting literature, can help in building a comprehensive evidence-based life-crafting intervention. This intervention can aid individuals to find a purpose in life, while at the same time ensuring that they make concrete plans to work toward this purpose. The idea is that life crafting enables individuals to take control of their life in order to optimize performance and happiness.
Purpose of Review
HIV-related stigma remains a significant barrier to engagement in care for persons living with HIV (PLWH) worldwide. This review examines the use of eHealth technologies for reducing stigma as a pathway toward improved engagement in care for PLWH. We provide a brief overview of effective stigma reduction interventions for PLWH, both eHealth and others; identify gaps in the research on use of eHealth technologies for stigma reduction; and suggest potential research avenues moving forward.
Recent Findings
The majority of HIV-related eHealth studies use technology to improve ART adherence. To date, few HIV-related eHealth studies have included any measurement of stigma.
Summary
Given the current narrow evidence base, further research is needed to determine whether eHealth technologies can help to reduce stigma and improve engagement in care for PLWH.
Theories of empowerment explain how people gain personal and political control to take action to improve their lives. However, empowerment theories were developed prior to the Internet and fail to account for the speed and scale that people can find one another online. One domain where empowerment is critical is caring for children with special needs, in which parents are required to navigate a complex maze of services and processes to access care for their child. We conducted 43 interviews with parents of children with special needs to investigate whether using social media sites helps them to perform this caregiving work. Critically, parents are able to do this through almost real-time access to other parents on Facebook. This work introduces the concept of networked empowerment, that describes how parents find other parents, access resources, and explore new ways for promoting health advocacy among caregivers at a local and national level. We conclude with design implications for facilitating faster and better access to information and support for caregivers.
Disability studies and assistive technology are two related fields that have long shared common goals - understanding the experience of disability and identifying and addressing relevant issues. Despite these common goals, there are some important differences in what professionals in these fields consider problems, perhaps related to the lack of connection between the fields. To help bridge this gap, we review some of the key literature in disability studies. We present case studies of two research projects in assistive technology and discuss how the field of disability studies influenced that work, led us to identify new or different problems relevant to the field of assistive technology, and helped us to think in new ways about the research process and its impact on the experiences of individuals who live with disability. We also discuss how the field of disability studies has influenced our teaching and highlight some of the key publications and publication venues from which our community may want to draw more deeply in the future.
Food is a central part of our lives. Fundamentally, we need food to survive. Socially, food is something that brings people together-individuals interact through and around it. Culturally, food practices reflect our ethnicities and nationalities. Given the importance of food in our daily lives, it is important to understand what role technology currently plays and the roles it can be imagined to play in the future. In this paper we describe the existing and potential design space for HCI in the area of human-food interaction. We present ideas for future work on designing technologies in the area of human-food interaction that celebrate the positive interactions that people have with food as they eat and prepare foods in their everyday lives.
Purpose:
Disability and ableism exist within a societal context that does not ignore the many facets of a person's identity, however often our disability research does not recognize how experiences vary based on the intersecting identities individuals hold. This article utilizes Intersectionality, Dis/ability Critical Race Studies (DisCrit), and Disability Justice to identify ways for rehabilitation researchers to adapt their research practices for maximum inclusivity and representation.
Materials and methods:
Using these three frameworks, we have developed a call to action including recommendations for rehabilitation researchers to consider as they design and implement research projects.
Results:
Incorporating these frameworks provides an opportunity to reimagine current research practices.
Conclusions:
An accessible approach can help researchers better understand and report on the nuances of intersecting identities on the lives of disabled people.Implications For RehabilitationDisability identity and ableism must be viewed intersectionally, and disability related research must attend to the many facets of a person's identity.Intersectionality, DisCrit, and Disability Justice provide useful frameworks through which we can conduct more inclusive and accessible disability research.We present a call-to-action including seven general considerations that researchers can implement to guide the development of intersectional and inclusive disability research.
Throughout the world, groups that are socially disadvantaged have poorer health compared to groups that are more advantaged. This book examines the role that stigma and discrimination play in creating and sustaining these group health disparities. Stigma is a social construction in which people who are distinguished by a “mark” are viewed as deviant, socially excluded, and devalued. Stigma and the discrimination it engenders negatively affect health through multiple mechanisms operating at several different levels of influence. Collectively, these shape both the orientations of people toward members of stigmatized groups and the experiences, and often the self-concepts, of members of groups targeted by stigma. Stigma affects individual-level affective, cognitive, behavioral, and physiological responses that increase stress in the lives of stigmatized groups. Stigma also restricts access to social and community-level resources relevant to good health and exposes individuals to more toxic environments. All act to erode the health of people who are stigmatized. This volume provides a cutting edge, multidisciplinary, multilevel analysis of health and health disparities through the integrative lens of stigma. It brings together the research of leading social and health psychologists, sociologists, public health scholars, and medical ethicists who study stigma and health. It integrates independent literatures on the health-related outcomes of stigma and discrimination and the diverse pathways and processes by which stigma and discrimination affect multiple health outcomes. The book is also forward-looking: It discusses the implications of these themes for policy, interventions, and health care, as well as identifies the most important directions for future research.
Navigating conception, pregnancy, and loss is challenging for lesbian, gay, bisexual, transgender, and queer (LGBTQ) people, who experience stigma due to LGBTQ identity, other identities (e.g., loss), and intersections thereof. We conducted interviews with 17 LGBTQ people with recent pregnancy loss experiences. Taking LGBTQ identity and loss as a starting point, we used an intracategorical intersectional lens to uncover the benefits and challenges of LGBTQ-specific and non-LGBTQ-specific pregnancy and loss-related online spaces. Participants used LGBTQ-specific online spaces to enact individual, interpersonal, and collective resilience. However, those with multiple marginalized identities (e.g., people of color and non-partnered individuals), faced barriers in finding support within LGBTQ-specific spaces compared to those holding privileged identities (e.g., White and married). Non-LGBTQ spaces were beneficial for some informational needs, but not community and emotional needs due to pervasive heteronormativity, cisnormativity, and a perceived need to educate. We conceptualize experiences of exclusion as symbolic annihilation and intersectional invisibility, and discuss clinical implications and design directions.
The experience of stigma by autistic people is relatively understudied, despite contributing to a range of poor outcomes and having an overarching impact on well-being. The current review of the literature synthesizes research to determine what is currently known and presents a theoretical model of autism stigma. Autism stigma is primarily influenced by a public and professional understanding of autism in combination with interpretation of visible autistic traits. Moderating factors include the quality and quantity of contact with autistic people, cultural factors, sex and gender, individual differences, and diagnostic disclosure. Stigma can reduce well-being as well as increase the presence of camouflaging behaviors, which mask autistic traits. Caregivers of autistic people can experience stigma by association, that is, affiliate stigma, which can impact their own well-being. A variety of interventions and approaches to reduce stigma are discussed, including "autism friendly"spaces, positive media representation, educational and psychosocial training for the public and professionals, as well as cultural and systemic shifts that foster inclusivity and recognize neurodiversity.
While parents of young children regularly make decisions about sharing content about their child or family online, we know less about how they create, produce, and share video-based content of children with stigmatizing experiences. Through an analysis of publicly available content on YouTube, supplemented with semi-structured interviews, we report on the ways in which parents of children with developmental disabilities produce, share, and interact with others through videos of their children's experiences. Our analysis finds that parents disclose child information on YouTube to build authenticity, connect with others, advocate for social change, and justify monetization and child involvement. We discuss tensions between parents' practices and the ethical complexities of sharing and studying parent-generated content featuring children with disabilities.
Psychosocial disability involves actual or perceived impairment due to a diversity of mental, emotional, or cognitive experiences. While assistive technology for psychosocial disabilities has been understudied in communities such as ASSETS, advances in computing have opened up a number of new avenues for assisting those with psychosocial disabilities beyond the clinic. However, these tools continue to emerge primarily within the framework of "treatment," emphasizing resolution or improvement of mental health symptoms. This work considers what it means to adopt a social model lens from disability studies and incorporate the expertise of assistive technology researchers in relation to mental health. Our investigation draws on interviews conducted with 18 individuals who have complex health needs that include mental health symptoms. This work highlights the potential role for assistive technology in supporting psychosocial disability outside of a clinical or medical framework.
“All too often,” wrote disabled architect Ronald Mace, “designers don’t take the needs of disabled and elderly people into account.” Building Access investigates twentieth-century strategies for designing the world with disability in mind. Commonly understood in terms of curb cuts, automatic doors, Braille signs, and flexible kitchens, Universal Design purported to create a built environment for everyone, not only the average citizen. But who counts as “everyone,” Aimi Hamraie asks, and how can designers know? Blending technoscience studies and design history with critical disability, race, and feminist theories, Building Access interrogates the historical, cultural, and theoretical contexts for these questions, offering a groundbreaking critical history of Universal Design. Hamraie reveals that the twentieth-century shift from “design for the average” to “design for all” took place through liberal political, economic, and scientific structures concerned with defining the disabled user and designing in its name. Tracing the co-evolution of accessible design for disabled veterans, a radical disability maker movement, disability rights law, and strategies for diversifying the architecture profession, Hamraie shows that Universal Design was not just an approach to creating new products or spaces, but also a sustained, understated activist movement challenging dominant understandings of disability in architecture, medicine, and society. Illustrated with a wealth of rare archival materials, Building Accessbrings together scientific, social, and political histories in what is not only the pioneering critical account of Universal Design but also a deep engagement with the politics of knowing, making, and belonging in twentieth-century United States. © 2017 by the Regents of the University of Minnesota. All rights reserved.
In today's technology-infused world, we need to better understand relationships youth form with friends online, how they compare to relationships formed in-person, and whether these online relationships confer protective benefits. This is particularly important from the perspective of peer victimization, given that social support in-person appears to reduce the odds of victimization in-person. To address this literature gap, data from a sample of 5,542 U.S. adolescents, collected online between August 2010 and January 2011, were analyzed. The main variables of interest were: online and in-person peer victimization (including generalized and bullying forms) and online and in-person sexual victimization (including generalized and sexual harassment forms). Lesbian, gay, bisexual, and transgender (LGBT) youth were more likely than non-LGBT youth to have online friends and to appraise these friends as better than their in-person friends at providing emotional support. Peer victimization and unwanted sexual experiences were more commonly reported by LGBT than non-LGBT youth. Perceived quality of social support, either online or in-person, did little to attenuate the relative odds of victimization for LGBT youth. For all youth, in-person social support was associated with reduced odds of bully victimization (online and in-person) and sexual harassment (in-person), but was unrelated to the other outcomes of interest. Online social support did not reduce the odds of any type of victimization assessed. Together, these findings suggest that online friends can be an important source of social support, particularly for LGBT youth. Nonetheless, in-person social support appears to be more protective against victimization, suggesting that one is not a replacement for the other.
In contrast to the traditional pathogenic paradigm, a paradigm of salutogenesis (tracing the origins of health) is suggested on the basis of Antonovsky's writings. Examples are presented to support the view that stressors are omnipresent, rather than the exception; however, it is also argued that people are nevertheless surviving and are remaining healthy. Five examples of salutogenic constructs which help explain such a concurrence are reviewed, namely, Antonovsky's ‘sense of coherence’, Kobasa's ‘personality hardiness’, Ben-Sira's ‘potency’, Thomas's and Colerick's ‘stamina’, and Rosenbaum's ‘learned resourcefulness’. Relationships between these constructs are discussed.
While assistive technology focuses on providing function to help people with disabilities overcome barriers to access, awkward and clunky designs often draw unwanted attention to the user. In this way, assistive technologies are not always designed with social situations in mind, and may contribute to issues of in-access, particularly in social situations. I am defining and developing a new approach, Design for Social Acceptance, to incorporate social acceptance into the design of assistive technology. The goal of my research is to make assistive technologies more socially acceptable to alleviate social misperceptions of assistive technologies and people with disabilities through improved design processes. I will conduct this work by (1) defining what design elements make up socially acceptable designs, and (2) by adapting and developing design techniques to incorporate social acceptance into the design process for assistive technologies. Thus far, I have conducted studies exploring how people with disabilities feel about using their technologies in social and professional contexts to gain an understanding of the socio-technical relations arising around assistive technologies.
This article argues that a mutual shaping lens enables a more encompassing account of the joint processes of technological and social change in new media than the diffusion of innovations and social shaping of technology perspectives. Drawing from recent work in sociology and history of technology, organization studies, social informatics, and computer-supported cooperative work, this article suggests that the shaping and diffusion of media artifacts are so intimately tied that they should be seen as the two sides of the same innovation coin. Using examples from the history of videotex newspapers in the United States, the analysis shows that actors simultaneously pursued interdependent technological and social transformations, that this was an ongoing process in which partial outcomes in the technological domain influenced social events at a later phase—and vice versa—and that such process was influenced by historical developments.
Autism community priorities for suicide prevention: an international society for autism research policy brief
- Sarah Cassidy Heather Cogger-Ward Ashley E Robertson
- Jane Goodwin
- Jacqui Rodgers
Design meets disability
- Graham Pullin
- Pullin Graham