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A call for a broader citizenship : parent-led autism advocacy movement in Portugal

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Resumo:This thesis is about Portuguese parents of children diagnosed with Autism Spectrum Disorders (from now on ASDs), defined as a set of neurodevelopmental disorders characterized by impairments in social interaction and communication skills and by rigid and repetitive patterns of behaviour (American Psychiatric Association 2013). It aims at understanding parents’ caregiving experiences and expectations regarding their children’s future, and at exploring their advocacy day-to-day practices and actions, and socio-political demands. I address, in particular, the ways in which parents use social media to deploy a different understanding of autism and to advocate for their children’s rights in order to challenge misleading and disabling stereotypes. My fieldwork, indeed, focused particularly on parent-led online communities - namely Internet based social networks (like Facebook) - where parents produce discourses about autism, share their experiences as caregivers, claim recognition for their knowledge, and call for their children’s health and educational services. Support and advocacy online groups serve as collective platforms for parents to share what it means to be a parent to a child with autism and to confront themselves about the decisions they make when caring for their children, to interact with other parents and create relationships and friendship, as well as to deploy their expert knowledge. Social media, as technological tools and spaces, can entail the potential of mobilization, insofar as they offer an opportunity for people to claim for social change by sensitizing and encouraging others to take action. For these reasons, online autism advocacy proves, in my view, to potentially bolster parents to gain attention and visibility regarding disability issues, social discrimination and marginalization. I also investigate the impact of autism in parent’s lives and explore the gendered practices of caregiving and advocacy within the family environment, as well as parents’ ideas about diversity, inclusion, and citizenship.
Autores principais:Lo Bosco, Maria Concetta
Assunto:Teses de doutoramento - 2018
Ano:2018
País:Portugal
Tipo de documento:tese de doutoramento
Tipo de acesso:acesso aberto
Instituição associada:Universidade de Lisboa
Idioma:inglês
Origem:Repositório da Universidade de Lisboa
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author Lo Bosco, Maria Concetta
author_facet Lo Bosco, Maria Concetta
author_role author
contributor_name_str_mv Pussetti, Chiara, 1972-
Bastos, Cristiana, 1959-
Repositório Científico de Acesso Aberto da ULisboa
country_str PT
creators_json_txt [{\"Person.name\":\"Lo Bosco, Maria Concetta\",\"Person.identifier.orcid\":\"0000-0002-7220-8762\"}]
datacite.contributors.contributor.contributorName.fl_str_mv Pussetti, Chiara, 1972-
Bastos, Cristiana, 1959-
Repositório Científico de Acesso Aberto da ULisboa
datacite.creators.creator.creatorName.fl_str_mv Lo Bosco, Maria Concetta
datacite.date.Accepted.fl_str_mv 2018-01-01T00:00:00Z
datacite.date.available.fl_str_mv 2018-12-17T12:09:13Z
datacite.date.embargoed.fl_str_mv 2018-12-17T12:09:13Z
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datacite.subjects.subject.fl_str_mv Teses de doutoramento - 2018
datacite.titles.title.fl_str_mv A call for a broader citizenship : parent-led autism advocacy movement in Portugal
dc.contributor.none.fl_str_mv Pussetti, Chiara, 1972-
Bastos, Cristiana, 1959-
Repositório Científico de Acesso Aberto da ULisboa
dc.creator.none.fl_str_mv Lo Bosco, Maria Concetta
dc.date.Accepted.fl_str_mv 2018-01-01T00:00:00Z
dc.date.available.fl_str_mv 2018-12-17T12:09:13Z
dc.date.embargoed.fl_str_mv 2018-12-17T12:09:13Z
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dc.language.none.fl_str_mv eng
dc.rights.none.fl_str_mv http://purl.org/coar/access_right/c_abf2
dc.subject.none.fl_str_mv Teses de doutoramento - 2018
dc.title.fl_str_mv A call for a broader citizenship : parent-led autism advocacy movement in Portugal
dc.type.none.fl_str_mv http://purl.org/coar/resource_type/c_db06
description This thesis is about Portuguese parents of children diagnosed with Autism Spectrum Disorders (from now on ASDs), defined as a set of neurodevelopmental disorders characterized by impairments in social interaction and communication skills and by rigid and repetitive patterns of behaviour (American Psychiatric Association 2013). It aims at understanding parents’ caregiving experiences and expectations regarding their children’s future, and at exploring their advocacy day-to-day practices and actions, and socio-political demands. I address, in particular, the ways in which parents use social media to deploy a different understanding of autism and to advocate for their children’s rights in order to challenge misleading and disabling stereotypes. My fieldwork, indeed, focused particularly on parent-led online communities - namely Internet based social networks (like Facebook) - where parents produce discourses about autism, share their experiences as caregivers, claim recognition for their knowledge, and call for their children’s health and educational services. Support and advocacy online groups serve as collective platforms for parents to share what it means to be a parent to a child with autism and to confront themselves about the decisions they make when caring for their children, to interact with other parents and create relationships and friendship, as well as to deploy their expert knowledge. Social media, as technological tools and spaces, can entail the potential of mobilization, insofar as they offer an opportunity for people to claim for social change by sensitizing and encouraging others to take action. For these reasons, online autism advocacy proves, in my view, to potentially bolster parents to gain attention and visibility regarding disability issues, social discrimination and marginalization. I also investigate the impact of autism in parent’s lives and explore the gendered practices of caregiving and advocacy within the family environment, as well as parents’ ideas about diversity, inclusion, and citizenship.
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spelling engpt_PTThis thesis is about Portuguese parents of children diagnosed with Autism Spectrum Disorders (from now on ASDs), defined as a set of neurodevelopmental disorders characterized by impairments in social interaction and communication skills and by rigid and repetitive patterns of behaviour (American Psychiatric Association 2013). It aims at understanding parents’ caregiving experiences and expectations regarding their children’s future, and at exploring their advocacy day-to-day practices and actions, and socio-political demands. I address, in particular, the ways in which parents use social media to deploy a different understanding of autism and to advocate for their children’s rights in order to challenge misleading and disabling stereotypes. My fieldwork, indeed, focused particularly on parent-led online communities - namely Internet based social networks (like Facebook) - where parents produce discourses about autism, share their experiences as caregivers, claim recognition for their knowledge, and call for their children’s health and educational services. Support and advocacy online groups serve as collective platforms for parents to share what it means to be a parent to a child with autism and to confront themselves about the decisions they make when caring for their children, to interact with other parents and create relationships and friendship, as well as to deploy their expert knowledge. Social media, as technological tools and spaces, can entail the potential of mobilization, insofar as they offer an opportunity for people to claim for social change by sensitizing and encouraging others to take action. For these reasons, online autism advocacy proves, in my view, to potentially bolster parents to gain attention and visibility regarding disability issues, social discrimination and marginalization. I also investigate the impact of autism in parent’s lives and explore the gendered practices of caregiving and advocacy within the family environment, as well as parents’ ideas about diversity, inclusion, and citizenship.application/pdfpt_PTA call for a broader citizenship : parent-led autism advocacy movement in PortugalPersonalLo Bosco, Maria ConcettaDSpacehttp://dspace.org/items/fdf4a6d2-14e1-43b6-9b0a-8e77fe50fe55DSpacehttp://dspace.org/items/fdf4a6d2-14e1-43b6-9b0a-8e77fe50fe55Lo BoscoMaria ConcettaCiência IDhttps://www.ciencia-id.ptFE17-F7DF-CC09ORCIDhttp://orcid.org0000-0002-7220-8762Pussetti, Chiara, 1972-Bastos, Cristiana, 1959-HostingInstitutionOrganizationalRepositório Científico de Acesso Aberto da ULisboae-mailmailto:repositorio@reitoria.ulisboa.ptrepositorio@reitoria.ulisboa.ptURNurn:tid:1014369472018-12-17T12:09:13Z201820182018-01-01T00:00:00ZHandlehttp://hdl.handle.net/10451/35924http://purl.org/coar/access_right/c_abf2open accessTeses de doutoramento - 20181794058 bytesliteraturehttp://purl.org/coar/resource_type/c_db06doctoral thesishttp://purl.org/coar/access_right/c_abf2application/pdffulltexthttps://repositorio.ulisboa.pt/bitstreams/d02e5f95-b311-4fc4-9a68-f4698d2afdcc/download
spellingShingle A call for a broader citizenship : parent-led autism advocacy movement in Portugal
Lo Bosco, Maria Concetta
Teses de doutoramento - 2018
status SINGLETON
subject.fl_str_mv Teses de doutoramento - 2018
title A call for a broader citizenship : parent-led autism advocacy movement in Portugal
title_full A call for a broader citizenship : parent-led autism advocacy movement in Portugal
title_fullStr A call for a broader citizenship : parent-led autism advocacy movement in Portugal
title_full_unstemmed A call for a broader citizenship : parent-led autism advocacy movement in Portugal
title_short A call for a broader citizenship : parent-led autism advocacy movement in Portugal
title_sort A call for a broader citizenship : parent-led autism advocacy movement in Portugal
topic Teses de doutoramento - 2018
topic_facet Teses de doutoramento - 2018
url http://hdl.handle.net/10451/35924
visible 1