This paper explores young autistic adults' energy management in relation to work, leisure activities and social relationships. Energy management strategies serve as different ways for the young autistic adults to sustain their energy balance by trying to understand what increases or reduces their energy levels. In this way, energy can be understood as modes of autistic functionality where the informants' individual energy levels, the contexts in which they find themselves and the strategies they use to influence and form central parts of their everyday lives.
Autistic people have historically been described as incapable of developing a deeper sense of self-awareness, and autistic understandings of self-awareness have been largely disregarded. The aim of this study is to explore the way young autistic adults try to understand their functionality and who they are, or to develop their sense of self-awareness, in work and in private life contexts. In 12 qualitative interviews conducted with four autistic adults without learning difficulties, we identified a rich set of reflections on knowing and accepting oneself. The overarching theme of self-knowledge has three subthemes: learning from previous experiences, learning about oneself by securing the support of others, and understanding and accepting autistic functionality. The strategy of self-knowledge was used by these young adults to help them achieve functional lives in the work and private domains. Our results show that young autistic adults both actively explore and develop their self-awareness. We suggest that it is important for practitioners and employers working with autistic individuals to engage with their journeys of self-awareness as a vital part of understanding and supporting them.
In this article, we explore experiences of support and self-management amongst young autistic adults in the context of vocational support interventions in Sweden. We analyse how young autistic men use different strategies to manage their vocational work and the support they need to maintain, achieve and sustain their work performance. Data consist of eleven interviews with 4 autistic young adult men in different work environments where vocational support interventions are implemented to different degrees. One finding concludes that the interviewees are affected by and try to adapt to neurotypical norms and expectations about working life and adulthood. Although individualised coping strategies can be helpful, it is important for employers and formal support persons to understand and acknowledge that individual emotional and problem-solving coping strategies are demanding and need to be combined with adaptations in the working environment. Another finding concludes how work managers act as gatekeeper in the vocational support system the young autistic men aspire to access and in which they need to manage their work performance. Thus, social workers must provide structured and well-coordinated formal work support by both involving the autistic clients’ employers, work managers and informal networks.
Utifrån egna erfarenheter av deltagarnära forskning resonerar vi i kapitlet om forskningsetik och forskaretik baserat på olika etiska dilemman och överväganden vi mött, olika betydelser av god forskningsetik och god forskning. Vi reflekterar över hur vi som forskare kan utveckla ett särskilt etiskt förhållningssätt som präglas av närhet och samarbete i en strävan att skapa kunskap som är praktiknära och samhällsrelevant. Vi har valt att utgå från tre forskningsprojekt. Två av projekten kretsar kring barn och unga. Det tredje fokuserar på hyresgästers upplevelser av bostadsförnyelse och hur boende organiserar sig i frågor som rör hemmet och boendet. Mot slutet av kapitlet resonerar vi om hur forskare ständigt bör reflektera över etik, i förhållande till sin roll som forskare och sina forskningspraktiker. Här diskuterar vi även fördelar med deltagarnära forskning som förespråka rhandling, teori, reflektion och praktik i forskningen.
In this paper we seek to restory what has been storied as “the problem of ADHD”. Informed by calls for a critical ADHD studies, we explore the possibilities of ADHD collective autoethnographic storytelling. Together we (en)counter narratives of ADHD. Within our collective writing space, from our ADHD/AuDHD bodyminds, we seek to re-story our ADHD/AuDHD. We map a field of critical ADHD research within social sciences and point out problems of outsider perspectives, stressing a need for insider perspectives. Our data consist of collective authoethnographic writings about ADHD. From the data we have explored our experiences of (En)Countering ADHD narratives, and a transition process which we refer to as from ”broken NT-scholars” to neurodivergent scholars, stressing the importance of ADHD:ers as independent as well as collective agents, and ADHD as epistemological standpoint within research.
Literature on attention deficit hyperactivity disorder (ADHD) has historically come from a cognitive deficit approach and lacked community authorship. In contrast, this article utilises a neurodiversity framework to explore ADHD as a cognitive difference through ADHDers’ experiences. Specifically, here we analyse collective autoethnographic writings from neurodivergent academic researchers writing to one other about their experiences of intensity and variable attention or interest-based attention. Through the process of collective writing, we started to rename and restory our experiences, which has enabled us to understand intensity and variable attention as a valuable facet of human diversity, with both strengths and challenges. This project offers an example of how community-based research can elucidate individual experiences as ADHD/AuDHD researchers, facilitate exploration of varied experiences with intensity and attention and increase self-awareness and ability to give and receive neuroaffirmative support.
This article examines the role of a civil society organisation that offers parental support to migrant parents with regard to meanings of parenthood and citizenship. It is based on the results of an action research study of a civil society organisation. The material consists of notes from participatory work in a local centre for children, youth and their parents, and of interviews with professionals, a project manager of the local organisation, and a public servant and a social worker who both work for the district council. Additional material is taken from notes of study visits to organisations working with the same target group. The results highlight four central themes. The first two themes, difficult parents in a precarious place and a place with a future?, revolves around parental needs in relation to place, the suburb. The third theme, civic parenting practices, focuses on parenting practices as civic practices. The fourth theme, gendering parent citizens, discusses the gendered meanings of the parent citizen as both an object and an agent of integration.
This study examines how childhoods are constructed within the assessment process concerning respite care for children with disabilities in Sweden. The social workers need to take into consideration the needs of the child with disabilities as well as those of the parents and siblings. The application for respite care compels the social worker to prioritise needs, evaluate children's development and define what constitutes a good childhood. One of the results of such a process is a construction of childhood for children with disabilities which contains a strong focus on practising and developing, whereas their siblings are perceived as needing relaxation and quality time with their parents. It matches the childhood sociological concepts of 'becomings' and 'beings', where children with disabilities are stressed as 'becoming' and continually needing to develop their skills.
This article scrutinizes children’s participation concerning the assessment process of respite care in Sweden. It is qualitative study based on 82 documents of application of respite care and a group interview with social workers. We use the participation model of Shier, which describes extent of participation as well as the mandate of the organization. Social workers try to inform the children and meet them. They also seek approval of respite care. However, children who don’t use spoken language and children who are seen as immature are not given adequate support to enable them to speak their voices. Besides, the participation is often restricted to say yes to respite care. There are hardly any traces of children’s reasons for being at respite care. This means an absence of knowledge concerning children’s views upon their own needs and problems.
The paper explores how disabled girls with Personal Assistants (PA:s) in a Swedish context constitute themselves as subjects in relation to intersecting meanings of age, gender, space, time and disability. The results illuminate the importance of social spaces and social relationships for the girls’ forming their sense of selves. Similar to ablebodied girls, disabled girls’ transition into adulthood can be viewed as a yoyo-transitions, entering and exiting different adult positions several times. Unlike ablebodied girls, they enter adult positions not commonly associated with youths, such as work leadership positions in relation to adult employees, such as the adult PA. This implies that they to some extent manage their own process of becoming an adult. Our findings stress the importance of recognition and awareness of disabled girls transition to adulthood as different not pathological to nondisabled girls’, where consideration is taken both to individual needs and preferences of female assistance users.
In a participatory action research project, we emphasize experiences of collaboration between aca-demic and community researchers by applying analytical autoethnography. The aim of the article is to describe the research process which involves both individual and collaborative processes, and to analyze challenges in relation to participation in the ongoing research process. We identified four themes: Start-up and initial challenges, Conditions and structural prerequisites for collabo-ration, Joint development of work methods and Power and role distribution. Our findings are presented in two separate analyses; a collaborative inductive analysis and an academic led theore-tical analysis in which Arnstein’s ladder of participation and Fricker’s concept of epistemic injus-tice are utilized in order to scrutinize challenges related to different degrees of participation in the research process. The results demonstrate that shared hermeneutic resources are necessary for the mitigation of epistemic injustice and enablement of mutual learning processes, such as collective writing processes. The results also indicate that a full participation for community researchers in the entire research process was difficult to achieve, both in relation to structural resources such as allocated time, and in relation to perceptions of meaning- making aspects, for example, indivi-dual interests and contributionsin terms of knowledge.
One goal with the UN Convention on the Rights of Persons with Disabilities is ensuring that persons with disabilities have the right to support in reaching and acting upon decisions. The aim of this pilot study was to explore how adults with intellectual disability describe their experiences of receiving support and being represented by a limited guardian. Two overall themes emerged from eight qualitative individual semi-structured interviews: Indispensable and valuable support and Mismanagement of the assignment. Our findings showed that limited guardianship is more complex than it may initially seem due to overlaps between protecting rights, ensuring support for the person, and managing financial matters. Mutual trust and the guardian’s ability to listen and be open to the client’s changing needs reduced the risk of the client being misrepresented or receiving insufficient support. To support assisted decision-making, limited guardians must develop their pedagogical skills and gain knowledge about intellectual disability.
Background. Involving people with acquired brain injury in service development has the potential to improve service and give experience-based knowledge legitimacy. The objective of this study was to explore experiences of sharing experience-based knowledge of living with acquired brain injury with others, with a particular focus on the conditions for sharing and learning, and the legitimacy of experience-based knowledge. Materials and Methods. Using a single case study design, the processes in two groups that were part of a Swedish supportive network for people with acquired brain injury were explored. One group consisted mainly of people with acquired brain injury who authored a blog and the other group consisted of healthcare staff who produced educational material with the involvement of a person with own experience of acquired brain injury. The data consisted of forty-one collective blogs, fifteen semistructured individual interviews, and ten observations from meetings. The data were analysed by utilizing the community of practice framework and the concepts of legitimate peripheral participation and epistemic injustice. Results. The findings showed that both groups developed learning processes with a focus on everyday rehabilitation as a joint enterprise. Mutual engagement developed from doing activities together and legitimacy in the groups came from engagement in these activities. In the education group, the ambition to involve people with own experience of acquired brain injury was never realized in practice. Hence, experience-based knowledge of living with acquired brain injury never got legitimacy in the group. Conclusions. We conclude that integrating experience-based knowledge from people with own experience of acquired brain injury demands careful and deliberate planning with specific consideration to existing power asymmetries between healthcare professionals and people with own experience. Mitigating epistemic injustice and gaining legitimacy for such knowledge require that people with experience of living with acquired brain injury are recognized as knowledge producers.
Children’s invisibility, non-participation or limited participation can be associated with social workers’ experiences of losing focus of the child in their work, while at the same time navigating organisational and legal demands where a child perspective is strongly promoted. This article sheds light on social workers’ experiences of workingwith a child perspective and with children’s participation. Six in-depth interviews were conducted with professionals from social services and ngo s and from different child welfare services in Sweden. Our findings indicate that losing focus of the child is a common phenomenon that relates to the dominance of adult-centred practice and that child-centred methods need to be developed. Social workers from NGOs described having better opportunities for working in a child-centred way. Losing focus of the child mirrors the subordinated position of child-centred practice, proving that a child perspective and children’s participation are still inadequately anchored in social work practice.
Health social worker as a profession emerged from the urbanization in the early 20th century. Nevertheless, the importance of the urbanization for the profession has not been studied. In this article, we explore how the organizational prerequisites and professional discretion of health social workers is influenced by the urban environment. Individual and focus group interviews collected among health social workers specialised in immigration respectively working in habilitation services within the Stockholm Region. Data was analysed using thematic analysis. Four themes were discovered: 1) Social work with urbanisation processes, 2) Globalization and the city, 3) Efficiency and professional discretion, and 4) the Big city’s many areas of collaboration. The results indicate that the urban environment can involve both a very limited professional discretion, but also provide conditions for increased professional discretion. This depending on whether steering and formation of assignments and tasks are negotiated on the basis of patients’ needs and based on the professions’ own conditions.