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Theoretical Models and Autism
... Entsprechend dem klinischen Modell von Autismus wird die Ursache für schulische ‚Probleme' im Körper bzw. im Gehirn des autistischen Kindes verortet und der Schwerpunkt der Autismusdarstellungen auf autistische Defizite gelegt (Chown & Beardon, 2017), insbesondere mit Verweis auf Theory of Mind: Autist*innen verfügen "nur eingeschränkt über diese Fähigkeit" (Schuster, 2020, 21), sie haben ein "reduziertes Verständnis für (psychische) Zustände anderer Personen" (Teufel & Soll, 2021, 36) und ihnen fehlt somit "ein soziales Verständnis" (Markowetz, 2020, 15). Die defizitäre Theory of Mind-Ausprägung erscheint als so anerkanntes Wissen, dass es bis auf wenige Ausnahmen (Markowetz, 2020) ohne Verweise auf Fachliteratur präsentiert werden kann. ...
Ratgeber eroberten im 20. Jahrhundert ‚neue‘ Medien, wie Radio und Fernsehen. Die Omnipräsenz und Allzugänglichkeit des Internets hat mediale Erscheinungsformen des Ratgebens und Ratnehmens im 21. Jahrhundert einmal mehr diversifiziert. Der Sammelband widmet sich daher Ratgebermedien aus verschiedenen sozialwissenschaftlichen Perspektiven und beleuchtet sowohl die Produktion und das Angebot als auch die Inanspruchnahme von Ratgebern für Eltern, Lehrkräfte, frühpädagogische Fachkräfte sowie für Kinder und Jugendliche. Er entstand im Arbeitszusammenhang des DFG-Netzwerks „Ratgeben und Ratnehmen zwischen Selbst- und Fremdoptimierung. Empirische Rekonstruktionen zur Produktion und Rezeption von Ratgebermedien“, das von 2021 bis 2024 existierte. (DIPF/Orig.)
... Entsprechend dem klinischen Modell von Autismus wird die Ursache für schulische ‚Probleme' im Körper bzw. im Gehirn des autistischen Kindes verortet und der Schwerpunkt der Autismusdarstellungen auf autistische Defizite gelegt(Chown & Beardon, 2017), insbesondere mit Verweis auf Theory of Mind: ...
Ratgeber eroberten im 20. Jahrhundert ‚neue‘ Medien, wie Radio und Fernsehen. Die Omnipräsenz und Allzugänglichkeit des Internets hat mediale Erscheinungsformen des Ratgebens und Ratnehmens im 21. Jahrhundert einmal mehr diversifiziert. Der Sammelband widmet sich daher Ratgebermedien aus verschiedenen sozialwissenschaftlichen Perspektiven und beleuchtet sowohl die Produktion und das Angebot als auch die Inanspruchnahme von Ratgebern für Eltern, Lehrkräfte, frühpädagogische Fachkräfte sowie für Kinder und Jugendliche. Er entstand im Arbeitszusammenhang des DFG-Netzwerks „Ratgeben und Ratnehmen zwischen Selbst- und Fremdoptimierung. Empirische Rekonstruktionen zur Produktion und Rezeption von Ratgebermedien“, das von 2021 bis 2024 existierte.
... Autistic reports also indicate that autistic people are misunderstood by non-autistic others resulting in stigma (Dekker, 1999;Chell, 2006;Chown and Beardon, 2017;Treweek et al., 2018). Moreover, media representations have largely focussed on autism as an illness that is a burden to others (Clarke, 2011;Huws and Jones, 2011;Sarrett, 2011;Brownlow et al., 2015), framing autism in terms of a deficit rather than a difference from a neurotypical majority norm (Smukler, 2005;Ortega, 2009;Kapp et al., 2013;Ridout, 2017). ...
Research on how autistic people are perceived by neurotypical people indicates that disclosing a diagnosis leads to a positive discriminatory bias; however, autobiographical autistic accounts indicate that diagnostic disclosure often results in negative discriminatory behavior. We report on an exploratory study to compare people’s self-reported helping behavior with their actual helping behavior toward an assumed autistic collaborator. We led 255 participants to believe that they were interacting online with a real person to play Dyad3D, a maze navigation game where players must work together to open doors, and complete the levels. However, participants were actually playing with an artificial confederate (AC) that is programmed to behave the same way across all interactions. This design enabled us to manipulate the diagnostic status of the AC that participants received prior to collaboration across three conditions: no disclosure, dyslexia-disclosure, and autism-disclosure. We use this method to explore two research questions: (1) is Dyad3D viable in creating a simulated interaction that could deceive participants into believing they were collaborating with another human player online? and (2) what are the effects of disclosing an autism diagnosis on social perception and collaboration? Combined with a post-game questionnaire, we compared differences between diagnostic conditions and differences between self-reported behavior and actual behavior in the game. Our findings show that Dyad3D proved to be an efficient and viable method for creating a believable interaction (deception success rate >96%). Moreover, diagnostic disclosure of autism results in the AC being perceived as more intelligent and useful, but participants also perceived themselves to be more helpful toward the AC than they actually were. We evaluate the strengths and limitations of the current method and provide recommendations for future research. The source code for Dyad3D is freely available (CC-BY-NC 4.0) so that the study is reproducible and open to future adaptation.
... This chapter outlines the methodological approach of the thesis. Before discussing the methodological challenges identified in Chapter 3 for each respective study, it is important to acknowledge a wider methodological challenge concerning the validity gap between research conducted on autism and the research interests of autistic people themselves (Nick Chown & Beardon, 2017;Jaswal & Akhtar, 2018;Pellicano et al., 2014b;Verhoeff, 2015). This chapter first sets the context for this issue and outlines the motivation for taking an abductive approach to research, which "provides a way to think about research, methods and theories that nurtures theory construction without locking it into predefined boxes" (Tavory & Timmermans, 2014, p. 4). ...
Research on autism, which is defined as a life-long developmental disability affecting social interaction, has focussed predominantly on how autistic individuals perceive and interact with others with less emphasis on the perspectives of their interactional partners. Yet autistic viewpoints have highlighted how other people are part of a two-way breakdown in interaction originating from differences between people rather than the deficit of any one individual, a phenomenon known as the double empathy problem. A gap therefore exists in the literature in terms of understanding how autistic sociality (i.e. the range of social opportunities possible for a given individual on the spectrum) is shaped by different interactional partners. This thesis examines the double empathy problem in three interactional contexts. Study 1 examines relationships between autistic people and their family members through focussing on perspective-taking, the ability to impute mental states to others. In light of prior research where autistic abilities have been assessed using abstract scenarios, Study 1 implements a two-way measure of perspective-taking which considers both sides of 22 real-life relationships (n=44) consisting of autistic adults and their family members, to understand how autistic people are seen by familiar others as well as vice versa. It uses a mixed-methods approach, where members of each dyad were individually asked about 12 topics, providing quantitative scores and qualitative explanation of their rating of Self, their rating of their partner, and their predicted rating by their partner. Comparison of perspectives provided a means for detecting misunderstandings and their underlying rationale. The contribution of Study 1 is that it shows perspective-taking is two-sided: family members can be biased in underestimating the perspective-taking of their autistic relatives, while autistic adults are aware of being negatively viewed despite disagreeing with such views. Study 2 examines interactions between autistic adults (n=30) partaking in a naturally occurring activity of video-gaming at a charity. It is a qualitative study using participant observation, with each conversational turn systematically rated in terms of coherence, affect and symmetry to identify the key features of neurodivergent intersubjectivity, the process through which autistic people build shared understanding in their own non-normative ways. The contribution of Study 2 is to identify two forms of neurodivergent intersubjectivity which enable shared understanding to be achieved, but which have traditionally been viewed as undesirable from a normative social viewpoint: a generous assumption of common ground that, when understood, lead to rapid rapport, and, when not understood, resulted in potentially disruptive utterances; and a low demand for coordination that ameliorated many challenges associated with disruptive turns. Study 3 examines interactions involving lay people (n=256) who believe they are interacting with an autistic partner through an online collaborative game, when in fact they are playing with an intelligent virtual agent (IVA) who behaves the same way for all participants. Its contribution is methodological as it develops a new application for simulating interactions in experimental research called Dyad3D. Study 3 uses Dyad3D to explore how disclosure of an autism diagnosis by the IVA affects social perception and social behaviour in comparison to a disclosure of dyslexia and a condition where there is no diagnostic disclosure. Combined with a post-game questionnaire, Study 3 triangulates self-reported (quantitative rating scales and qualitative explanation) and behavioural measures (quantitative scores of actions within the game) to understand the interplay of positive and negative discrimination elicited through using the label of autism. It highlights that diagnostic disclosure of autism leads to significant positive bias in social perception when compared to a disclosure of dyslexia or a no disclosure condition; yet participants are not as helpful towards the autistic IVA as they think they are, indicating a potential bias in helping behaviour. The thesis takes an abductive methodological approach which integrates with a wider call for a more participatory model of research in the study of autism. Abduction is a form of reasoning which involves the iterative development of a hypothesis that holds the best explanatory scope for the underlying phenomena observed. It is inherently aligned with a participatory model of research because abduction involves the ongoing exploration of ideas that may originate from multiple sources (i.e. interactions with autistic people as well as research outputs). Taking a more holistic approach to the development of knowledge with autistic people which recognises the legitimacy of different claims to knowledge is important, because prior research in the field has often failed to critically reflect on researcherparticipant positionality and the principals underlying the development of research agenda. For this reason, the thesis details the participatory activities which surround and interconnect with the development of the three empirical studies. Overall the thesis contributes to understanding autistic sociality as a dynamic, interactionally shaped process. It reasons that autistic people have unrealised social potential, both in terms of imagining other perspectives (Study 1) and coordinating with others (Study 2). However, such social potential may not be easily recognised by other non-autistic people who may be biased in their assumptions about autism (Study 1 and Study 3). Consequently, the evidence presented in this thesis helps to explain some of the processes that underscore the double empathy problems reported in literature, including poor mental health (because autistic people are aware that they are misunderstood by others, see Study 1), employment prospects (because autistic social potential is under-recognised by others, see Study 1 and 3), and quality of life (because neurotypical standards of communication are not compatible with neurodivergent forms of intersubjectivity, see Study 2). The thesis therefore makes suggestions for how we design enabling environments which are sensitive to the dynamic factors that can enable autistic sociality to flourish.
Background
Autistic women and gender diverse people have specific needs related to their physical and mental health. They also experience more barriers to accessing services. While there are autobiographical accounts of the ‘invisible’ challenges that autistic women and gender diverse people face day-to-day, there has been limited research that explores how these experiences impact health and wellbeing.
Objectives
This study aimed to understand the everyday experiences of autistic women and gender diverse people, and their impact on health and wellbeing.
Design
Qualitative methods were used to elicit rich information about the unique experiences of autistic women and gender diverse people.
Methods
We conducted semi-structured interviews with 31 autistic adults. The data were analysed using reflexive thematic analysis.
Results
We identified 3 themes and 10 subthemes. Our first theme described ‘all the stuff that you have to do to get through life’, including managing domestic tasks, parenting, unique health needs and co-occurring physical conditions. The second theme outlined the impact of ‘living in a world that’s not about us’, describing how navigating the neurotypical world, managing gender role expectations and trying to fit impacts on mental health. Our third theme outlined the positive impacts of ‘shedding all the layers and being myself’, including the importance of formal identification, exploring autistic identity and community, and including autistic people in research to support them to ‘have a good life on their own terms’.
Conclusion
This study emphasized the importance of shifting the responsibility of health and wellbeing from the individual, and the importance of interpersonal, community, cultural, policy and societal factors in ensuring positive health outcomes for autistic women and gender diverse people. It also highlighted areas that enable autistic women and gender diverse people to flourish, including autistic community connectedness, positive relationships and autistic-affirming support from health professionals.
Saudi Arabia as a traditional society is mostly based on the medical model of disability to interpret autism that increases the stigma and the negative social attitude towards the condition. Additionally, the media plays a big role in portraying the condition as a “disorder” that contributes to the cultural judgment within the country. In this paper, the authors reviewed 57 articles between 2011 and 2021 using the databases of Google, Swisscows, and StartPage. Document analysis was used to analyse the data from both journals and newspapers. Results have shown that the studies exploring autism in media are quite limited with almost nonexistent papers on the roles of media and the medical model of disability in the stigmatisation of autism in Saudi Arabia.
It is both epistemologically as well as ethically problematic if the autistic voice is not heard in relation to social scientific research seeking to further develop knowledge of autism. Ever since autism first emerged, it has remained medicalised and almost exclusively the preserve of non-autistic researchers. More recently, autistic individuals have begun to contribute to autism research. However, the vast majority of research in autism is still undertaken on autistic people, rather than with them, and is often not concerned with improving the day-to-day lives of people with autism. We discuss the concepts of participatory research and emancipatory research before presenting a draft framework for what we regard as truly inclusive research in autism. Our proposals are firmly based on ideas developed by the members of a university-based group of autistic adults (the Asperger’s Consultation Group) as well as the knowledge and experience of the other contributors.
This paper discusses various approaches to the phenomenon of disability in relation to special needs. Ever since disability researchers launched the social model of disability and criticised the field of special education for preserving an understanding of disability in accord with a medical model, the special education field has been in a state of crisis. The implication of this has been the embarrassment of talking about categories and levels of functional difficulty; as well as diagnoses, all of which enable individual assessments necessary for building the IEPs (Individual Educational Plans) and child‐centred teaching within special needs education. The challenge for special needs theorists is to consider the critique of the orthodoxy of special needs education and its understanding of disability, yet at the same time to develop an understanding of disability that can serve as a departure point for working in the field of special needs education. This implies an understanding of the phenomenon of disability, identifying pupils’ needs without contributing to the negative effects that often have come about in the wake of classification, categorisation and labelling in education. The present paper argues for a social relational model of disability as a platform for the enterprise of special needs education. The rationale for the social relational model of disability is that it better conforms to the morality of inclusion because the main issue of the social model, oppression, is not obliterated.
The American Psychological Association (APA) advocates the use of person-first language (e.g., people with disabilities) to refer to individuals with disabilities in daily discourse and to reduce bias in psychological writing. Disability culture advocates and disability studies scholars have challenged the rationale for and implications of exclusive person-first language use, promoting use of identity-first language (e.g., disabled people). We argue that psychologists should adopt identity-first language alongside person-first constructions to address the concerns of disability groups while promoting human dignity and maintaining scientific and professional rigor. We review the evolution of disability language and then discuss the major models used to characterize disability and people with disabilities. The rationale for person-first language and the emergence of identity-first language, respectively, are linked to particular models. We then discuss some language challenges posed by identity-first language and the current intent of person-first language, suggesting that psychologists make judicious use of the former when it is possible to do so. We conclude by offering five observations of ways that use of both person-first and identity-first language could enhance psychologists' cultural competence regarding disability issues in personal and scientific communications. (PsycINFO Database Record (c) 2015 APA, all rights reserved).
The rise in the measured prevalence of autism has been accompanied by much new research and research investment internationally. This study sought to establish whether the pattern of current UK autism research funding maps on to the concerns of the autism community. Interviews and focus groups were conducted with autistic adults, family members, practitioners and researchers to identify their priorities for research. We also captured the views of a large number of stakeholders via an online survey. There was a clear disparity between the United Kingdom’s pattern of funding for autism research and the priorities articulated by the majority of participants. There was general consensus that future priorities for autism research should lie in those areas that make a difference to people’s day-to-day lives. There needs to be greater involvement of the autism community both in priority setting and in research more broadly to ensure that resources reach where they are most needed and can make the most impact.
This paper reviews theory and research on disability and gender from a UK perspective. It reflects upon the theoretical perspectives and debates that are to be found in UK disability studies today, and considers their relevance for research on the gendered nature of disability. Themes in empirical research are noted, as is the representation and treatment of disability in mainstream feminism(s). The paper warns about the danger of exclusion through nominal inclusion.
This paper considers sociological understandings of what constitutes disability. Current meanings of disability in both disability studies and medical sociology are examined and compared, using selected articles from leading authors in each discipline as case studies. These disciplines are often represented as offering starkly contrasting approaches to disability, with their differences amount-ing to a disciplinary 'divide'. It is argued that, on closer inspection, common ground can be found between some writers in disability studies and medical sociology. It is suggested that this situation has arisen because, in disability studies, the social relational understanding of disability developed by Vic Finkelstein and Paul Hunt in the 1970s has been lost over time, overshadowed by the rise to prominence of its offspring: the social model of disability. The paper concludes with some reflections on the need to revive a social relational understanding of disability.
Understanding this thing called autism
- K Runswick-Cole
Besieged by behavior analysis for autism spectrum disorder: A treatise for comprehensive educational approaches
- E Shyman
Autism and the human
- D Goodley