Representing autism: Challenges of collective representation in German and Israeli associations for and of autistic people

Raz, Aviad E.; Jongsma, Karin; Rimon-Zarfaty, Nitzan; Späth, Elisabeth; Bar-Nadav, Bosmat; Vaintropov, Ella; Schicktanz, Silke

doi:10.1016/j.socscimed.2018.01.024

Cited by 44 publications

(8 citation statements)

References 30 publications

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“…However, one needs to be realistic that the wellestablished and politically better-integrated POs for leave only little room in the political landscape to be filled by upcoming POs of. In other areas, such as autism, a split of POs of and for results in POs of often questioning their status as patients by understanding themselves as Bneurodiverse,^but not as ill or pathologic (Raz et al 2018;Chamak 2008). In the context of dementia POs, however, such radical split with regard to political aims and conceptualization of the condition is absent.…”

Section: Discussionmentioning

confidence: 99%

“…Should this self-advocacy be prioritized over other forms of advocacy for the patient's best interest by parents, relatives, caretakers, or doctors? These questions loom large in the context of frailty, vulnerability, and social participation, and continue to present ethical, social, and political challenges for an inclusive society (for a detailed analysis of representative styles in autism POs, see also Raz et al 2018).…”

Section: Introductionmentioning

confidence: 99%

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Patient Representation and Advocacy for Alzheimer Disease in Germany and Israel

et al. 2018

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This paper analyses self-declared aims and representation of dementia patient organizations and advocacy groups (POs) in relation to two recent upheavals: the critique of social stigmatization and biomedical research focusing on prediction. Based on twenty-six semi-structured interviews conducted in 2016–2017 with members, service recipients, and board representatives of POs in Germany and Israel, a comparative analysis was conducted, based on a grounded theory approach, to detect emerging topics within and across the POs and across national contexts. We identified a heterogeneous landscape, with the only Israeli PO focusing strongly on caretakers, whereas in Germany several POs claim to represent this patient collective. Shared aims of all POs were fighting social stigma, balancing the loss of patients’ individual autonomy, and the well-being of caretakers. By highlighting the emergence of new groups of dementia self-advocacy against the more traditional advocacy by others, this study highlights how advocacy and representation in the context of AD are embedded in the discursive context of stigmatization and revised disease conception. Future developments in early diagnosis and prediction of dementia, with more affected people likely to conduct dementia self-advocacy, might challenge existing representation structures even more.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Patient Representation and Advocacy for Alzheimer Disease in Germany and Israel

et al. 2018

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“…The United States and Canada follow the North American model described above. In Germany, scholars have documented similar tensions (Jongsma et al, 2017;Raz et al, 2018). In France, self-advocacy and parent groups have been more aligned in their goals and perspectives, particularly in rejecting psychoanalysis and ensuring access to services (Chamak, 2008), although selfadvocacy groups have distanced themselves from parent groups more recently (Chamak & Bonniau, 2013).…”

Section: Research Settingsmentioning

confidence: 99%

Autism service preferences of parents/guardians and autistic adults in five countries

Cascio

Racine

2022

Autism Research

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Scholars and activists debate whether people on the autism spectrum should access autism-specific services or general/inclusive/mainstream services. This article presents quantitative results from a mixed-methods survey of autistic adults and parents/guardians of autistic people in Canada, France, Germany, Italy, and the United States. Respondents reported categories of services used (autism-specific, mixed-disability, or general/inclusive/mainstream), satisfaction, and overall service preference. Most respondents preferred autism-specific services, followed by different categories of services for different service types. Demographic factors had little influence on overall service preferences. No significant differences were found between adults' and parents/guardians' overall service preferences. For parents/ guardians, using autism-specific services was associated with a preference for autism-specific services. There were significant associations between the services respondents reported having previously used and their overall service preference. Parents/guardians in Italy and France reported lower satisfaction with many services. These results suggest that a preference for autism-specific services pervades different groups. While most respondents did endorse autism-specific services, the strong secondary preference for different service categories encourages providers and policy makers to attend to diverse needs. While satisfaction was generally middling to high, there remain areas for improvement, especially in general job training services. General services can use a Universal Design approach and collaborate with autism-specific and mixed-disability services to increase accessibility to diverse populations. The influence of previous service use on preferences suggests that providers can leverage strengths of existing services, leverage and create connections, and ask users about previous experiences to better address their expectations. Lay SummaryThis study asked autistic adults and parents/guardians of autistic people what they think about autism services. Most parents/guardians and adults liked services that focus on autism, but many parents/guardians and adults liked them for some things and not others. All services can ask people about services they used in the past and learn from the strengths of good services through Universal Design and working with other services.

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“…However, the descriptive quality is not a dichotomy. For instance, representation should include both the severely ill and those with a more manageable condition (Raz et al, 2018). The position that inclusion of some voices necessarily leads to the exclusion of others stresses the importance of recognizing the diversity among the represented.…”

Section: Standing For Patients: Symbolic and Descriptive Representationmentioning

confidence: 99%

Federative patient organizations in a decentralized health-care system: A challenge for representation?

Mankell

Fredriksson

2020

Health (London)

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Over the last two decades, the inclusion of patient voices and public values in the field of health care through deliberation has become increasingly emphasized, by patients as well as policy-makers. This is achieved not only through individual patient participation but also through patient interest organizations. Geographical representation within national interest organizations is especially important in a decentralized, multilevel policy field such as Swedish health care, allowing representation from all regions to be present in national advocacy. Using Pitkin’s conceptualization of political representation, this study aims to characterize the shaping of representation among Swedish federative patient organizations, in a time of professionalization and centralization of civil society. The results show that patient organization representation has functioning mechanisms for all studied aspects of representation; however, the nature of the substantive representation seems to contain a challenge from a democratic perspective. This leads us to a discussion about management, rooted in democratic ideals but simultaneously strongly characterized by more managerial ideals, and the contradiction of democracy and actionable management.

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Representing autism: Challenges of collective representation in German and Israeli associations for and of autistic people

Cited by 44 publications

References 30 publications

Patient Representation and Advocacy for Alzheimer Disease in Germany and Israel

Patient Representation and Advocacy for Alzheimer Disease in Germany and Israel

Autism service preferences of parents/guardians and autistic adults in five countries

Federative patient organizations in a decentralized health-care system: A challenge for representation?

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