Invisible Autistic Infrastructure: Ethnographic Reflections on an Autistic Community

Past research has largely focused on the negative aspects of well-being of autistic young adults during the post-school transition. Research that meaningfully includes autistic individuals and captures their perspectives of positive well-being is essential for stakeholders to better understand how to provide services that respond to the needs and wants of the autistic community. In the current study, 14 autistic young adults in a post-school transition program participated in a Photovoice project and used photos to express their ideas about well-being. A participatory action research approach was used to support participants’ active engagement in the research processes and to encourage meaningful expression of their first-person perspectives. Results revealed an account of well-being reflecting expressions of individuality and growth, the significance of having close relationships, and a sense of connection with the community. This study has implications for research and practice that promotes well-being among the autistic community using approaches that are ethically informed and inclusive of autistic voices. 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.

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Phenomenon of Autism in the Prospect of Cultural Anthropology

Scientific Research and Development Socio-Humanitarian Research and Technology ◽

10.12737/article_5ba39886ea06c9.12791496 ◽

2018 ◽

Vol 7 (3) ◽

pp. 33-38 ◽

Cited By ~ 1

Author(s):

Елена Викторук ◽

Elena Viktoruk ◽

А. Гох ◽

A. Goh ◽

В. Минеев ◽

...

Keyword(s):

Cultural Anthropology ◽

Participant Observation ◽

Management Strategies ◽

Health Needs ◽

Primary Data ◽

World Population ◽

The People ◽

The Social ◽

Special Health ◽

Autistic Community

The entity of people with special health needs (SHN), in particular with disorders of the autistic spectrum becomes an important socio-cultural subsystem. This subsystem covers not only persons with SHN, but also their environment. The implementation of the correctional system is a disadvantage, in comparison with the inclusive model in which people with SHN are integrated into society. The problem for the solution of which the authors’ efforts are made is that, for the present, the considerable part of the world population is not ready to accept the autistic community as a real agent of the social planning, which fulfills its own management strategies. Researchers of autism quite often ignore a position of the most autistic community on this or that question. The purpose of this article consists in search of approaches to creation of a conceptual model of autism and autistic community, which could form the reliable basis for development of the social technologies promoting a full integration of the people with special health needs into society. Mainly theoretical methods of research are used: logical analysis, elements of the structural-functional analysis, comparative analysis, and also axiological approach. At the same time, an attempt to generalize a primary data obtained by empirical methods, such as observation, participant observation, questioning, the content analysis, interview is made. It is shown that for the stated goal to be achieved it is fruitful to consider a phenomenon of autism in the prospect of cultural anthropology. The concept of autistic culture is clarified and its relevance for study of autism and autistic community is substantiated. Some features of autistic culture are revealed. The discussion showed that many criteria of autism can be fully understood from the cultural-anthropological standpoint. The proposed approach meets the principles of post-non-classical rationality and allows to mitigate the social-biological dilemma. The results obtained can form a methodological-and-world-outlook basis for investigations in the fields of pedagogics, psychology, culturology.

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The loneliness of me: The assumption of social disinterest and its worrying consequences in autism

Behavioral and Brain Sciences ◽

10.1017/s0140525x18002303 ◽

2019 ◽

Vol 42 ◽

Cited By ~ 1

Author(s):

Rachel Louise Moseley ◽

Jie Sui

Keyword(s):

Emotional Health ◽

Social And Emotional ◽

Autistic Community

Abstract We share Jaswal & Akhtar's concerns about the unintended repercussions of assumed social disinterest in autism. We expand consideration of these consequences with discussion of the literature and our own work on loneliness, mental ill-health, and self-representation, which is a cornerstone to social and emotional health. Further study is needed with expansive, mixed methodologies and involvement of the autistic community.

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Integrating Community Participation With Interpretative Phenomenological Analysis: Reflections on Engaging the Autism Community

International Journal of Qualitative Methods ◽

10.1177/16094069211055575 ◽

2021 ◽

Vol 20 ◽

pp. 160940692110555

Author(s):

Gabrielle A. Heselton ◽

Gwen R. Rempel ◽

David B. Nicholas

Keyword(s):

Community Engagement ◽

Research Design ◽

Interpretative Phenomenological Analysis ◽

Childhood Adversity ◽

Autism Spectrum ◽

Phenomenological Analysis ◽

Participatory Methods ◽

Community Members ◽

Related Research ◽

Autistic Community

Members of the autistic community have long advocated for more input into and participation with autism-related research. Currently, the power to determine the direction of autism-related research and knowledge production related to autism lies with non-autistic researchers, while the wishes and perspectives of the autistic community are largely ignored. There is a growing trend toward ethical autism-related research, however, in which the perspectives of all stakeholders, particularly those of autistic individuals, are sought and their expertise on autism is foregrounded. In a study exploring the experiences of childhood adversity and resilience among autistic adults, we strove to conduct our research in an inclusive and ethical way, by integrating participatory methods, such as community engagement to inform research design, and credibility checking with participants to confirm that the analysis resonated with their experiences. Five stakeholders, representing parents of children on the autism spectrum, professionals, and autistic community members were recruited to provide input into the research design and provide insight into autistic ways of communicating, interacting, and being. The recommendations generated through this community engagement were then integrated into an interpretative phenomenological analysis (IPA) framework and implemented with four adult autistic participants. Through reflection on the process of community engagement, development of research design, implementation of the study, and credibility checking, it is clear that incorporating participatory methods into IPA increases rigor and ensures that autistic perspectives are represented through research.

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“It’s being a part of a grand tradition, a grand counter-culture which involves communities”: A qualitative investigation of autistic community connectedness

10.31219/osf.io/atd69 ◽

2021 ◽

Author(s):

Monique Botha ◽

Bridget Dibb ◽

David Frost

Keyword(s):

Social Connectedness ◽

Self Esteem ◽

Autism Diagnosis ◽

Community Connectedness ◽

Health And Wellbeing ◽

Sense Of Direction ◽

Autistic People ◽

Counter Culture ◽

Political Connectedness ◽

Autistic Community

Autistic people report experiencing greater comfort socialising and easier communication with other autistic people compared to with non-autistic people. Despite autism being stereotypically associated with a lack of social motivation or community, an autistic community has been described briefly in the literature but is not yet well understood. Autistic community connectedness (ACC) may play an important role in promoting and protecting wellbeing for autistic people. This qualitative study involved interviewing autistic individuals (N = 20) in-person, via a video-based platform, over a text-based platform, or over email (according to the needs of the participants) to investigate ACC. Critical grounded theory tools were used to collect and analyse the data. Three elements of ACC were apparent in the data: belongingness, social connectedness, and political connectedness. Belongingness referred to the general sense of similarity that autistic people experienced with other autistic people, which they often did not with non-autistic people. Social connectedness referred to specific friendship participants formed with other autistic people. Political connectedness referred to a connectedness to the political or social equality goals of the autistic community. Participants described the benefits of ACC as being increased self-esteem, a sense of direction, and access to a sense of community that they did not typically experience with non-autistic people. Lack of connectedness involved ambivalence with an autism diagnosis and/or feelings of internalised stigma. These experiences of ACC may have implications for autistic people’s health and wellbeing, as well as how they deal with exposure to discrimination and stigma.

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Leveling Up Regulatory Support Through Community Collaboration

Perspectives of the ASHA Special Interest Groups ◽

10.1044/2020_persp-20-00197 ◽

2021 ◽

pp. 1-18

Author(s):

Amy C. Laurent ◽

Jacquelyn Fede

Keyword(s):

Emotional Regulation ◽

Community Collaboration ◽

Energy Regulation ◽

Educational Programming ◽

Future Directions ◽

Community Voice ◽

Autistic People ◽

The One ◽

Online Sources ◽

Autistic Community

Purpose No group has more stake in the game than the community that researchers, educators, and practitioners aim to serve. In our field, we must recognize not only that autistic people are those most affected by decisions around programming and policies, but that they are key informants in decisions around the conceptualization, implementation, and evaluation of educational programming for autistic learners. Too often, they are left out of these discussions altogether. To illustrate the process of community collaboration, we discuss emotional and energy regulation (ER), a top priority among autistic people based upon their viewpoints. Method In this clinical focus article, we outline what emotional regulation is, why it is relevant and often challenging for the autistic population, the shortcomings of current practice, as well as practical strategies and ways of thinking about supporting ER for autistic learners. We provide theoretical insights as well as firsthand accounts from a diverse group of autistic people. Each autistic person contributing their perspective in this clinical focus article provided written consent for their participation, as well as direction as to how they wanted to be cited and acknowledged. Quotes were gathered from personal communications, social media posts, and online sources. The clinical viewpoint and materials and tools presented throughout the clinical focus article are the works of the authors that have been informed by the autistic community. Results Based upon the qualitative data presented in this clinical focus article, incorporating the autistic community voice when devising tools and strategies is validating of their experiences and generates useful supports. Conclusions Using a framework similar to the one presented here for engaging the autistic community will help to facilitate the conceptualization of more reliable, valid, and effective supports, goal-setting, and programming overall. Future directions related to the value of empirical study of the tools and strategies developed through such a process are offered.

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