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Ett meningsfullt liv med arbete?: Högfungerande individer med autism mellan funktionshinder- och arbetsmarknadspolitik
Umeå University, Faculty of Social Sciences, Department of Social Work.ORCID iD: 0000-0002-8670-2796
2021 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The aim of this thesis is to study notions of employment among high-functioning individuals with autism (HiA) and their experiences of vocational rehabilitation or work-preparatory programs and to analyze how these experiences reflect upon the labor market policy’s and disability policy’s common shared goal of supporting individuals towards a socially included life with meaningful work. This study was conducted through ethnographic fieldwork in a private company (VRP) that operated as a service provider for the Employment Service Agency, and a Swedish residential folk high school (FHS). Both of the organizations provided work-preparative programs specifically for HiA. Three of the four sub-studies are based on qualitative data consisting of individual interviews, focus group interviews, and field notes from participant observations. The fourth sub-study represents an analysis of legal documents targeting employment and health in disability policy.

The results in sub-study 1 illustrate that the narratives provided by HiA strongly address the subject position of the citizen-worker. Their suggested ideal jobs were deprioritized in favor of more available jobs on the market. The central incentives to pursue either the ideal or second-option jobs can be identified as the personal perception of attaining a sense of meaningfulness through work, which was depicted as central to the sense of self-fulfillment, identity, and wellbeing. As the second sub-study shows, the fulfillment of personal ambitions and ideas of meaningful work was not met in the case of the VRP participants. Social inclusion was not experienced as a result of the received service provisions. The results rather indicate a manifestation of the normalization principle’s basic attributes with regard to spatial integration in work-like activities (disability-worker contexts) rather than social inclusion on an equal basis with others (citizen-worker contexts). The third sub-study then showcases how social work practices were produced at the intersection of clients’ needs and personas and the organizations’ conditional premises in FHS and VRP. The analysis resulted in the conclusion that a person-centered approach was lacking in the VRP whereas highly present in the FHS. The fourth and last sub-study focuses on how Swedish disability policy is constructed to meet the objectives of the CRPD regarding active citizenship that is associated with health (engagements in private life, work-life, community life, social/family life, etc.) and thereby full participation on an equal basis with others. The results suggest that the policy area of employment, implicitly and explicitly, overshadows the policy area of health and intimately associated life-areas that are important to wellbeing.

The conclusions are that FHS and ARP both reflect a strong dedication to provide services that aim towards preparing individuals for work. However, a more holistic approach in professional practices must be practiced in VRPs if a socially included life with a sustainable work situation for HiA is strived for. With regard to a socially included life with meaningful work, the above must be accounted for in addition to individuals’ personal perceptions and notions of meaningfulness.

Place, publisher, year, edition, pages
Umeå: Umeå universitet , 2021. , p. 131
Series
Studier i socialt arbete vid Umeå universitet : avhandlings- och skriftserie, ISSN 0283-300X ; 98
Keywords [en]
Disability policy, ethnographic fieldwork, high-functioning individuals with autism, labour market policy, meaningful work, social inclusion, welfare services.
National Category
Social Sciences
Identifiers
URN: urn:nbn:se:umu:diva-183208ISBN: 978-91-7855-517-8 (print)ISBN: 978-91-7855-518-5 (electronic)OAI: oai:DiVA.org:umu-183208DiVA, id: diva2:1555548
Public defence
2021-06-11, Triple Helix, Universitetsledningshuset, Umeå, 10:00 (Swedish)
Opponent
Supervisors
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2012-1111
Note

Serienummer saknas i publikationen. 

Available from: 2021-05-21 Created: 2021-05-18 Last updated: 2021-05-21Bibliographically approved
List of papers
1. Narratives of ideal and second-option jobs among young adults with high functioning autism
Open this publication in new window or tab >>Narratives of ideal and second-option jobs among young adults with high functioning autism
2019 (English)In: Nordic Social Work Research, ISSN 2156-857X, E-ISSN 2156-8588, Vol. 9, no 2, p. 104-117Article in journal (Refereed) Published
Abstract [en]

The meaning of work is different for people in different social groups, and research exploring perceptions of meaningful work among adults with high-functioning autism (HFA) is scarce. The aim of this paper is to explore how narratives of satisfactory and meaningful future jobs are portrayed relative to two alternative discourses of work – the 'obligation to work' discourse, and the 'disability rights' discourse. This group of individuals are high functioning on the one hand, while at the same time holding legally-mandated special disability rights, an exploration of how this group reason about work-life and satisfactory jobs is particularly interesting. Through ethnographic fieldwork in Sweden, seven young adults with HFA were followed, and 17 interviews were conducted. The main findings and conclusions are that jobs that are individually assessed to be ‘ideal’, are put aside in favor of jobs that are more compatible with general labor market demands, as long as enjoyment and meaningfulness can still be experienced.

Place, publisher, year, edition, pages
Routledge, 2019
Keywords
Citizen-worker, high functioning autism, meaningful work, vocational support, work-life
National Category
Social Work
Identifiers
urn:nbn:se:umu:diva-150586 (URN)10.1080/2156857X.2018.1484385 (DOI)2-s2.0-85091426175 (Scopus ID)
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2012-1111
Available from: 2018-08-13 Created: 2018-08-13 Last updated: 2023-03-23Bibliographically approved
2. Encouraging real or make-believe citizen-workers?: Narratives of self-realization versus disabling support-to-work contexts by individuals with High Functioning Autism
Open this publication in new window or tab >>Encouraging real or make-believe citizen-workers?: Narratives of self-realization versus disabling support-to-work contexts by individuals with High Functioning Autism
2019 (English)In: Alter;European Journal of Disability Research ;Journal Europeen de Recherche Sur le Handicap, ISSN 1875-0672, E-ISSN 1875-0680, Vol. 13, no 2, p. 126-140Article in journal (Refereed) Published
Abstract [en]

Sweden, like other Western countries, has a disability legislation that coexists with the Active Labour Market Policies. ALMP address a discourse emphasizing the importance of the able and productive ‘citizen-worker’, who is expected to crafthis/her own success through meaningful personal goals and ambitions. This discourse also impacts disability groups who are actualized for support-to-work interventions, such as people with high-functioning autism (HFA). The objective of this paper is to analyse how narratives targeting ambitions and self-realisation in work life are expressed by individuals with HFA in relation to the citizen-worker discourse. This ethnographic study comprises 26 qualitative interview narratives by 11 participants with HFA. Findings indicate that the participants have developed a strong citizen-worker identity. The will is an essential point of gravity, expressed through notions of individual meaningfulness and ambitions of being perceived as resources in any vocational context. Barriers to these ambitions are experienced as personally counteractive support-to-work practices. These results suggest that disability legislation and policies are caught in a mantra of stagnating normalisation, resulting in disability-worker interventions that are incompatible with meanings emphasized in the citizen-worker discourse, which is the new ‘normal’ of today.

Abstract [fr]

À l’instar d’autres pays occidentaux, la Suède a une législation sur le handicap qui coexiste avec les politiques d’activation sur le marché du travail. Le discours de ces dernières met l’accent sur le « citoyen-travailleur », compétent et productif, dont on attend qu’il réussisse en réalisant ses ambitions et des objectifs qui leurs soient personnels et auxquels ils attachent du sens. Ce discours touche aussi les groupes de personnes handicapées qui bénéficient d’aide à l’emploi, par exemple les personnes atteintes d’autisme de haut niveau de fonctionnement. En lien avec ce discours sur le citoyen-travailleur, l’article propose d’analyser comment ces personnes expriment leurs ambitions et rendent compte de la réalisation d’elles-mêmes dans la vie professionnelle. Cette étude ethnographique est constituée de 26 entretiens qualitatifs, menés avec 11 participants atteints d’autisme de haut niveau de fonctionnement. Les résultats montrent que les participants se sont approprié une forte identité de citoyen-travailleurs. La volonté joue un rôle central, elle s’exprime via les notions de sens personnel et d’ambition à être considéré comme une ressource, quel que soit le contexte professionnel. Les pratiques qui s’opposent aux mesures d’aide au travail sont perçues comme des obstacles à la réalisation de ces ambitions. Nos résultats suggèrent que la législation et les politiques du handicap restent prises dans l’éternel mantra de la normalisation, ce qui aboutit à des interventions auprès des travailleurs handicapés difficilement compatibles avec le sens valorisé par le discours du citoyen-travailleur, nouveau standard contemporain du « normal ».

Place, publisher, year, edition, pages
Elsevier, 2019
Keywords
Citizen-worker, High functioning autism, Inclusion, Self-realisation, Vocational rehabilitation, Work
National Category
Social Work
Identifiers
urn:nbn:se:umu:diva-157714 (URN)10.1016/j.alter.2019.03.001 (DOI)000467422900005 ()2-s2.0-85063028976 (Scopus ID)
Note

French title: Encourager des citoyens-travailleurs réels ou imaginaires ? Accomplissement de soi et aide à l’emploi dans les récits de personnes atteintes d’autisme de haut niveau de fonctionnement

Available from: 2019-04-01 Created: 2019-04-01 Last updated: 2023-03-24Bibliographically approved
3. Exploring Person-centered Service Provisions: High-Functioning Adults with Autism in contemporary Public and Corporate Social Work
Open this publication in new window or tab >>Exploring Person-centered Service Provisions: High-Functioning Adults with Autism in contemporary Public and Corporate Social Work
(English)Manuscript (preprint) (Other academic)
Abstract [en]

Changes in the management of human service organizations impact national service provisions for people with disabilities in western societies, where service provisions are given in a scattered field of social work arenas. High-functioning adults with autism (HIA) represent a disability group that is actualized for different forms of work life preparative services. This ethnographic study was conducted in two different service provisional contexts in Sweden, a folk high school program (FHS) and a vocational rehabilitation program (VRP). The main focus in this paper is an exploration of how these diagnosis-specific provisional contexts and professional approaches adhere to key components in social work, such as person-centered services and notions of equity and empowerment, and how these approaches are experienced by program participants. Content analysis on field notes, interview narratives, and a complementary Institutional Logics perspective result in the conclusion of an adverse consumer perspective in the VRP and highly present person-centeredness in the FHS, both of which are reflected in the experiences of the participants.

National Category
Social Sciences
Identifiers
urn:nbn:se:umu:diva-183169 (URN)
Available from: 2021-05-18 Created: 2021-05-18 Last updated: 2021-05-18
4. Cherry Picking Disability Rights?: Swedish Disability Policy on Employment, Health and Participation
Open this publication in new window or tab >>Cherry Picking Disability Rights?: Swedish Disability Policy on Employment, Health and Participation
2020 (English)In: Nordic Journal of Working Life Studies, E-ISSN 2245-0157, Vol. 10, no 3, p. 3-22Article in journal (Refereed) Published
Abstract [en]

The aim of this article is to broaden the understanding of how Swedish disability policies are constructed to meet the objectives of the ratified UN Convention on the Rights of Persons with Disabilities (CRPD) regarding active citizenship and full participation on an equal basis with others. The study examines two policy domains: health and employment. Recently issued legal documents are analyzed using the approach of directed content analysis and the theories of ‘social risk’ and ‘governance’. The results suggest that the policy area of employment implicitly and explicitly overshadows the policy area of health and related rights accounted for in the CRPD. A more nuanced perspective in disability policies concerning employment in relation to active citizenry and full participation is required, accompanied by social policy schemes that encompass the perspective of the CRPD as a whole in all support-to-work services, instead of the limited focus of finding full-time employment.

Place, publisher, year, edition, pages
VIA University College, Denmark, 2020
National Category
Social Sciences
Identifiers
urn:nbn:se:umu:diva-175188 (URN)10.18291/njwls.v10i3.121844 (DOI)
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2012-1111
Available from: 2020-09-18 Created: 2020-09-18 Last updated: 2024-01-17Bibliographically approved

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