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From Cure to Community: Transforming Notions of Autism
Abstract
Abstract For many decades, autism has been viewed as a biomedical condition, highlighting deficits in social interaction and communication. Based on ethnographic data from a study of adults with High Functioning Autism, this article explores the emergence of the autistic community, a group composed of people with autism, who are challenging these notions. First, I suggest that three historical trends can be linked to the emergence of this community: the widening of the autism spectrum, the strengthening of the self-advocacy movement, and the explosion of technology. Drawing from ethnographic data, I describe the community, including its discourse, occupations or activities, and lexicon. Although the autistic community has grown over the past decade, it has also faced resistance from both inside and outside the group. I investigate this tension, arising in a debate regarding whether autism is a condition in need of a cure or a way of life and suggest that the autistic community has the power to transform notions of autism. Implications of this research for psychological anthropology's notions of sociality are introduced. [autism, community, social model of disability, occupation]
... This view on autism's causality gave way during the 1970s and 1980s to a neurobiological and neurocognitive understanding characterizing autism by impairments in social interaction, communication, and imagination (Evans, 2013). Yet, not everyone agrees with the framing of autism as an impairment, and there have been debates on whether autism, and its various forms, is to be viewed as a biomedical condition (or even disorder), or as a natural variation of a person's neurological make-up (see e.g., Bagatell, 2010;Molloy & Vasil, 2002;. These wide-ranging historical changes have led many, from clinical researchers to philosophers, to reflect on what actually constitutes the core of autism and how to relate to its incessant redefinitions (see e.g., Chapman, 2020;Dant, 2015;Happé & Frith, 2020). ...
... A main line of conflict has been (with a risk of oversimplifying) between parents of children with autism and adults with autism. The latter have criticized parent-dominated associations as being run by "neurotypicals" promoting a view of autism as a biomedical disorder, rather than as a form of neurological variation (Bagatell, 2010;Raz et al., 2018). Groups, especially within the autistic community, have consequently stressed an understanding of autism as "neurodiversity," in contrast to a deficit-based model of autism . ...
... Oftentimes broad conflict lines have been drawn between parents of children with highsupport needs who strive to find and promote better diagnostic procedures and treatments, and adults with low-support-needs autism who argue that their autism is a neurological variation, not a disorder to be treated (Bagatell, 2010;Bertilsdotter Rosqvist et al., 2015;Raz et al., 2018;Silverman, 2011). ...
Autism has come to be portrayed as something complex, ambiguous, and heterogeneous. I therefore contend that what is now needed are analytical tools to further explicate the modalities of this heterogeneity and ambiguity. I propose that one way forward is to draw on analytical vocabularies intended for analyses of the (non)coherence of phenomena, more specifically Law et al.’s concept modes of syncretism. I employ this concept to stage a theoretical intervention in the historiography of autism through a close reading of a booklet published by the Swedish Autism and Asperger Association to commemorate its founding 40 years earlier. The analysis shows that the booklet contained several discursive enactments of autism, and that different syncretic practices were used to handle and balance these. I also discuss how modes of syncretism can be useful as an analytical vocabulary for studying other contested and heterogeneous topics, diagnoses, and issues in psychology.
... As an alternative, the social model of disability acknowledges the role of environmental barriers. It values autism as a natural variation rather than a disorder or deficit (Bagatell, 2010;Straus, 2013). Aligned with this idea, the neurodiversity paradigm understands human brain functioning as a continuum of diverse styles and explains autism as one of these potential variations. ...
... This idea that autism is inseparable from the person, also points out that autism can be seen as a culture because in this sense autism is a collective phenomenon with social representation. Autistic communities have their own form of socialization, their own sense of belonging, and they are seen as a social group (Bagatell, 2010;Ochs & Solomon, 2010;Straus, 2013). This phenomenon is consistent with other disability communities that have a strong sense of cultural identity such as the deaf community and the blind community (Senghas & Monaghan, 2002;Vaughan & Schroeder, 2018). ...
... In addition, the adjectives used to complement this term (e.g., infantile autism, classic autism, and typical/atypical autism) reflected this medicalized view of autism and supported this idea that autism is a borrowed concept from adult psychiatry to explain psychopathology in children. During the 2000's and 2010's the autism word was categorized as alternative language because it was employed alone, without descriptive adjectives, which reflected a more neutral use of the term. 1 Nowadays, this term has been reconceptualized as a general label that the autistic community embraces and allows identification across a group of people that require different levels of support (cf., ASAN, n.d.;Bagatell, 2010;Straus, 2013). This semantic change reveals transformations in the LWW/TLD TLD-D-23-00027 January 8, 2024 20:58 ...
The discussion about the words and concepts related to autism is alive in the scholarly community, tacitly or explicitly. Contrasting ideologies linked to the medical model and neurodiversity paradigm underlie terminology referring to autism. The present proof-of-concept study conducted a critical discourse analysis of the terminology (i.e., microstructure) used to describe autism in two academic journals across four decades. Specifically, we utilized the framework provided by Bottema-Beutel et al. (2021) to analyze 35 articles published in Journal of Autism and Developmental Disorders and Autism. These articles were reviewed with a focus on terminology used to describe the concept of autism, autistic individuals, and nonautistic individuals. The main findings support the feasibility of this proof-of-concept study. They revealed a predominant use of potentially ableist language across the four decades and a slow incorporation of alternative terms usually linked with more inclusive language in the last decade. We suggest that this change has been driven by the autistic community in a process of democratizing the role of experts. Accordingly, we recommend including autistic individuals' choices to designate their community.
... This thesis uses the inclusive term 'autism' and the identity-first terms 'autistic person', 'autistic' and 'autist' to be consistent with the preferences of most autistic people (Bagatell, 2010;Kenny et al., 2015;Lowery, 2015;Mendability, 2015;Sinclair, 1999). However, formal diagnostic labels are used when specified in the scholarly work cited. ...
... In contrast, many autistic advocates and allies conceptualise autism as a naturally occurring difference, neurological variation or condition (Bagatell, 2010;Clough, 2015). They draw upon the social model of disability, which asserts that disability occurs when people with impairments experience impediments to participation in society (Oliver, 2004). ...
... The autism rights movement challenges society to accept and value autistic people (Bagatell, 2010;Solomon, 2008). It recognises that autistic people have areas of difficulty that may benefit from support, but autism rights activists (often autistic people, parents, support people, and professionals) encourage recognition of unique autistic experience and the value brought to the individual and society by that experience. ...
The past two decades have seen increasing social science and legal interest in the relationship between autism and criminal justice. Most publications have been case study or legal analyses, or focussed on quantitative topics (for example prevalence or offence type). What is noticeable by their relative absence are the voices of autistic people, especially those who have been suspected of or charged with a crime, and for whom legal proceedings occurred in the regular criminal system. This runs counter to the goals of the autism rights movement and critical autism studies which value the experiences and opinions of autistic people, and promote research that will make a positive difference to their lives. This research investigates the lived experience of 10 autistic adults subject to the Aotearoa New Zealand criminal justice system. Through interpretative phenomenological analysis, six superordinate themes were identified. Illustrated through participant quotes, these were: unease with New Zealand Police; overwhelming legal processes; encounters with mental health professionals; the impact on self and others; recommendations from the participants; and adversity across the lifespan. The thesis also identified four factors, power, process, perception and participation, that both influenced how the participants made sense of their CJS experiences and were compelling forces for change.
... Le renouvellement du regard sur l'autisme au prisme de la neurodiversité, en particulier, est aujourd'hui incarné par des recherches émergentes à l'international comme en France 5 (Bagatell, 2010 ;Dachez, 2016 ;Lopera-Mármol et Malet, 2022), dont certaines s'intéressent à la dimension genrée des savoirs (Davidson, 2008 ;Jack, 2012 ;Laflamme et Chamberland, 2020). Les approches neuroqueer de l'autisme, portées par des chercheur·euses autistes et queer mobilisant l'épistémologie des savoirs situés (Haraway, 2007 ;Harding, 2003 ;Hartsock, 1998), interrogent également la place des personnes concernées dans l'actualisation des connaissances (aux États-Unis : Egner, 2018 ;Richter, 2017 ;Walker, 2023 ;Yergeau 2018 ;et en France : Coville et Lallet, 2023). ...
... The evolution of thinking about autism through the neurodiversity paradigm in particular, is now led by emergent research around the world and also in France 10 (Bagatell, 2010;Dachez, 2016;Lopera-Mármol and Malet, 2022). Some of them focus on the gendered dimension of the production of knowledge (Davidson, 2008;Jack, 2012;Laflamme et Chamberland, 2020) while neuroqueer approaches to autism are led by queer-autistic researchers (in the United States: Egner, 2018;Richter, 2017;Walker, 2023;Yergeau 2018 andin France: Coville andLallet, 2023) who develop studies based on grounded theory and situated knowledge (Haraway, 2007;Harding, 2003;Hartsock, 1998). ...
Please find below the CFP (in French and English) for special issue no. 20 of the French journal Genre en séries: cinéma, télévision, médias. This special issue is entitled “Gender and Neurodiversity on Screen”.
We welcome submissions written in French or English. Submissions must include: an abstract of 500-800 words, key bibliographical references and a short biographical notice. The submission guidelines are detailed at the end of the CFP.
Abstract submission deadline: February 3rd 2025.
Notification of acceptance/rejection: March 3rd 2025.
Final paper submission deadline: June 30th 2025.
Submissions will be subjected to double blind peer review by members of the scientific committee for a publication in spring of 2025.
... In contrast with the person-first approach, the identity-first approach thus sees autism as central to one's identity, as inseparable from who one is, and as a way of life (Bagatell, 2010). Notably, the identity-first approach is often cashed out in terms of self-ascription and self-identification-e.g., "I am autistic". ...
... In this case, language policies were grounded in the belief that AIDS should be treated and eventually cured as a disease, as well as in the idea that contracting the disease was universally regarded as negative. Generally speaking, if a condition is firmly placed within the medical model and seen as a disease to be cured (Bagatell, 2010), as it is the case with AIDS, it might be difficult for an individual to identify with it and vindicate it. Again, the underlying reason is that the relevant condition is seen as intrinsically bad, as a disruption of normal functioning, or simply as something that should not be there. ...
Over the past few years, there has been much debate about how autistic people should be described and labeled. Two main tendencies have emerged in this discussion, usually known as the person-first approach and the identity-first approach. While the former proposes to talk about ‘person(s) with autism’, the latter claims that ‘autistic person’ is more adequate. We first discuss person-first and identity-first approaches along with the reasons that have been offered for embracing one or the other. Then we focus on the consequences that both approaches entail: first, the conception of autism as a condition, along with metaphysical conceptions of self and identity; second, linguistic emancipatory possibilities, such as reclamation. We argue that these two approaches ultimately promote a different stance on autism as a condition and that while the reclamation of ‘autistic’ is more clearly aligned with the identity-first view, the person-first approach is not entirely incompatible with some reclamation projects.
... From this analysis, I derive three tenets for a more holistic and compassionate conceptualization of neurodivergence: 1) neurodivergence is a functional difference that can be adaptive, depending on context; 2) neurodivergent disability is a moment of friction enacted by an individual's abilities and their environment; and 3) neurodivergence accessibility learns from neurodivergent traits to mutually benefit both neurotypical and neurodivergent people. By framing neurodivergence as a functional difference, I am shifting the conversation away from debates between the medical and social models of disability, which have divided both the accessibility research [125,210,240] and broader neurodivergent [10,12,116] communities. Moreover, by centering the tenets around everyday lived experiences and Data Feminism's practical approach to intersectionality, I am moving the discussion beyond Critical Theory-which has been critiqued for its inaccessibility, impracticality, and "orient[ation] more towards the academy than towards activism" [201]-to pragmatic applications. ...
... He straightens himself up a little. "While there is no 'cure' for autism [12,28], there are medications I can prescribe to treat your symptoms of anxiety and depression. But something I'd like to discuss is your thoughts on taking ADHD stimulants. ...
The increasing prevalence of neurodivergence has led society to give greater recognition to the importance of neurodiversity. Yet societal perceptions of neurodivergence continue to be predominantly negative. Drawing on Critical Disability Studies, accessibility researchers have demonstrated how neuronormative assumptions dominate HCI. Despite their guidance, neurodivergent and disabled individuals are still marginalized in technology research. In particular, intersectional identities remain largely absent from HCI neurodivergence research. In this paper, I share my perspective as an outsider of the academic research community: I use critical autoethnography to analyze my experiences of coming to understand, accept, and value my neurodivergence within systems of power, privilege, and oppression. Using Data Feminism as an accessible and practical guide to intersectionality, I derive three tenets for reconceptualizing neurodivergence to be more inclusive of intersectional experiences: (1) neurodivergence is a functional difference, not a deficit; (2) neurodivergent disability is a moment of friction, not a static label; and (3) neurodivergence accessibility is a collaborative practice, not a one-sided solution. Then, I discuss the tenets in the context of existing HCI research, applying the same intersectional lens. Finally, I offer three suggestions for how accessibility research can apply these tenets in future work, to bridge the gap between accessibility theory and practice in HCI neurodivergence research
... In addition to propagating stigma, viewing autism through a lens of pathology motivates the development of interventions to cure the person who is suffering (12). Hence, a constellation of autism interventions has been developed to do just this (13). ...
... Equally important is the intersection between the individual strengths and challenges and the facilitating and hindering factors in any specific context (23). This represents a cultural shift away from the biomedical's singularly deficit-focused conceptualisation; a shift that has emerged alongside increasing autistic self-advocacy and within an increasingly unified autistic community (12). ...
Background
Despite receiving autism diagnoses in early life, autistic children are not routinely supported to understand these diagnoses post-diagnostically (1). Consequently, they typically grow-up lacking an accurate understanding of what it means to be autistic on both a collective and individual level (2). Without this foundational knowledge, children’s understanding of autism is garnered from how others perceive their autism, resulting in an understanding of autism, and of themselves, that is inherently negative (3). This lack of appreciation of their own individual needs, also denies them the important self-understanding afforded by the diagnosis in the first instance, alongside the opportunity to effectively self-advocate for themselves when these needs go unmet.
Aims
Here we sought to directly assess the benefit of a pre-recorded, online autistic-led psychoeducation course about autism and the lived experience of being autistic (i.e., ‘NeuroBears’ https://www.pandasonline.org ), for children’s understanding of autism and their autistic experiences, their feeling about being autistic, their communication with others about their autistic experiences, and their confidence to self-advocate for their needs.
Methods
Using a concurrent embedded mixed-methods, repeated-measures design, autistic children (aged 8-14 years), completed a bespoke questionnaire exploring the above topics, both before and after completing NeuroBears at home with a nominated safe adult. A total of 63 children (mean age=10.57 years) completed sufficient content to be included in the analysis.
Results
Significant benefit was observed across a range of areas, including a significant improvement in the children’s knowledge and understanding of being autistic and of their unique strengths and challenges, a significant rebalancing of how the children viewed being autistic, evidence of emerging positive autistic identities and a growing sense of belongingness, a significant change in the children’s abilities to communicate about being autistic, and evidence of strengthening self-advocacy skills.
Conclusion
Learning about autism in a neutral and non-stigmatizing manner, and presented through the lens of autistic lived experience, conferred numerous benefits on autistic children’s self-understanding, emergent autistic identity, sense of belonging, and on their communication/self-advocacy skills. Future work is needed to establish the downstream benefits on wellbeing and quality of life.
... In contrast, in the neurodiversity paradigm autism is depicted as a valuable neurological manifestation of the variability observed across the board in the human species (e.g., in the color of our skin, gender, and sexual orientation; Bertilsdotter et al., 2020;Jaarsma & Welin, 2012). For this reason, neurodiversity advocates claim that autistic brains are different, not deviant, inferior, or superior to neurotypical brains, and they often see autism as an inseparable aspect of the identity of individuals on the autism spectrum (Areheart, 2008;Bagatell, 2010;Kapp et al., 2013;Shyman, 2016;Strauss, 2013). ...
... We pose that CSD and FLT professionals should consult with autistic clients/students regarding the value of autistic traits for the task at hand and not simply assume that such traits will have a negative impact on performance. As sustained by neurodiversity advocates and supported by a growing body of research, including this study, some autistic traits (e.g., echolalia) might be beneficial for the pursuit of certain goals, FLL among them (Angulo-Jiménez & DeThorne, 2019; Bagatell, 2010;Strauss, 2013;Jones et al., 2013;McLaughlin & Rafferty, 2014). SLPs and FL instructors are encouraged to explore the reported positive dimension of such traits and to consider highlighting them as strengths in Individualized Education Programs (see DeThorne & Searsmith, 2020). ...
Purpose
Although autistic perspectives are paramount for evidence-based practice and the neurodiversity paradigm, they are often underrepresented in research and have only recently started to get attention from professionals in different fields, including communication sciences and disorders (CSD) and foreign language teaching (FLT). To alleviate this situation, we conducted an exploratory study on the experiences of self-identified autistic bloggers with foreign language learning (FLL).
Methods
We used deductive thematic analysis to characterize the bloggers and establish the perceived effect of autism on FLL.
Results
Our analysis of 14 blog posts revealed that the typical blogger had an autism diagnosis, spoke English natively, and had learned Spanish or French as a foreign language through formal instruction and/or self-teaching. We also found that all the bloggers acknowledged both positive and negative effects of autism on FLL, with more bloggers focusing on positive effects.
Conclusions
Findings highlight the need for professionals in CSD and FLT to (a) avoid making assumptions about the FLL capabilities of autistic individuals, (b) consult with autistic individuals regarding the perceived value of autistic traits for FLL, and (c) engage in interprofessional practice with each other.
... Therefore, a person's experience of disability is not defined by degree of impairment or type of disability. For example, the argument for use of identity-first language in autism has been criticised as driven by people with autism without severe cognitive impairments or behavioural difficulties, and who view their condition within the context of neurodiversity rather than disorder, which may not be representative of people with autism more broadly (Bagatell, 2010;Kenny et al., 2016). Parents of people with autism who have reduced independence have opposed people with autism who have low support needs vocalising their preferences as those of the autism community, given they do not represent the broader spectrum of individuals (Bagatell, 2010). ...
... For example, the argument for use of identity-first language in autism has been criticised as driven by people with autism without severe cognitive impairments or behavioural difficulties, and who view their condition within the context of neurodiversity rather than disorder, which may not be representative of people with autism more broadly (Bagatell, 2010;Kenny et al., 2016). Parents of people with autism who have reduced independence have opposed people with autism who have low support needs vocalising their preferences as those of the autism community, given they do not represent the broader spectrum of individuals (Bagatell, 2010). ...
The use of person-first language (i.e., the person with a disability) versus identity-first language (i.e., the disabled person) is a source of ongoing debate. Proponents of person-first language argue for its use, so as not to objectify or stereotype a person by their illness or disability. Conversely, advocates of identity-first language state that it affirms pride in the person’s disability. Overall, however, there is a growing use of identity-first language. Both proponents of person-first and identity-first language are aligned in their quest to maximise respect and inclusivity of people with disabilities and health conditions. Limited research examining the language preferences of those with disabilities and/or medical issues has been mixed. The majority of the research has focused on autism, multiple sclerosis and deaf/blind populations. In some cases, studies have methodological issues, and researchers have concentrated on the perspectives of students, employees and counsellors. Factors that may influence preferences, such as disability type, severity, acceptance and identity, have not been adequately examined in the research. Future research is required to gain an evidence-based understanding of language preferences that can improve social inclusion for people with varying disabilities and health conditions.
... Autism Spectrum Disorder (ASD) is a disorder listed under the Diagnostic and Statistical Manual of Mental Disorders, 5 th edition. 1,2 It is classified as a neurodevelopmental disorder, and according to the DSM-V, characterized notably by persistent deficits in communication skills and restrictive and repetitive patterns of behavior, interest, and activities. Autistic individuals also lack the social skills to develop, maintain and understand relationships, although symptoms may change or be invisible due to "masking"-a compensatory mechanism developed by the individual. ...
... 1 While certain members of the autism community are pushing for self-advocacy and against a cure as they view it to be a part of their life, many express a desire for intervention to help cope with some daily life challenges, such as sensory sensitivities or GI problems in certain autistic individuals. 2 An early diagnosis would benefit these individuals greatly, as it may help open the path for early intervention. Research has turned to investigating biomarkers for ASD instead of relying on the more behavioral symptoms, using models developed to predict the presence of ASD in individuals with specific features in their genome. ...
Autism Spectrum Disorder (ASD) is a neurologic development disorder; it is listed in the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-V). Early diagnosis is critical in improving the life quality of individuals affected by ASD. Several studies show that Artificial Intelligence can be used in the diagnosis of ASD through biological means such as observing patient EEG data and surveying their genome. Articles were searched in the PUBMED database, ScienceDirect, and Springer Link between 2019 - 2020. Four papers were selected for review. The papers devised models that can accurately predict ASD in affected individuals, though some are based on old data and/or require testing on larger datasets to determine accuracy. As ASD diagnosis usually cannot be achieved before the individual shows symptoms, AI has the potential to improve ASD diagnosis in affected individuals. Further study to confirm the models and test on larger, more recent datasets would be required to develop more accurate models and achieve even better results. Autism spectrum disorder (ASD) merupakan salah satu gangguan perkembangan saraf yang tercantum pada Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-V). Diagnosis dini sangat penting untuk meningkatkan kualitas hidup individu ASD. Beberapa penelitian menunjukkan bahwa kecerdasan buatan dapat digunakan untuk diagnosis ASD melalui metode berbasis biologis seperti mengamati data EEG pasien dan mensurvei genomnya. Review ini berbasis pencarian data antara tahun 2019 – 2020 di database PUBMED, ScienceDirect, dan Springer Link. Empat makalah kunci dipilih untuk ditinjau. Makalah-makalah tersebut mampu merancang model yang dapat memprediksi ASD secara akurat, meskipun beberapa aspek implementasinya didasarkan pada data usang dan/ atau memerlukan pengujian pada kumpulan data yang lebih besar untuk menentukan akurasi. Mengingat diagnosis ASD biasanya tidak dapat dilakukan sebelum individu menunjukkan gejala, kecerdasan buatan berpotensi meningkatkan ketepatan diagnosis ASD. Masih diperlukan studi lanjutan untuk mengkonfirmasi model dan pengujian pada kumpulan data yang lebih besar dan lebih baru untuk mengembangkan model yang memiliki presisi lebih baik dan hasil lebih akurat.
... Concerningly, adults often reported significant difficulties accessing support after diagnosis (Crane et al., 2018;Lewis, 2016). Most research (Bagatell, 2010;Kapp et al., 2013). Neurodiversity proponents endorse the social model of disability, where disability is attributed to an unaccommodating society and should be remediated by efforts to reduce stigma and remove barriers to participation (Kapp et al., 2013;Shakespeare, 2017). ...
... However, neither medical nor social models fully account for the complex interaction between individual impairment and social barriers in autistic people's experiences. Studies found that many autistic adults endorse a combination of medical model and neurodiversity beliefs, where appreciation of autistic identity and strengths coexist with a desire to reduce deficits through interventions (Bagatell, 2010;Kapp et al., 2013). These disparate perspectives have important implications for the understanding of autistic adults' support needs and priorities. ...
Adulthood autism diagnosis has become increasingly common, but little is known about post-diagnosis support experiences and needs. We interviewed 19 autistic adults and 4 support persons on experiences of formal and informal post-diagnosis support. Reflexive thematic analysis was used to identify themes. Participants reported difficulties accessing suitable formal support, especially regarding education and employment. Informal support was helpful but created challenges in the relationships between autistic adults and support persons. For autistic adults, support from autistic peers fostered belonging and self-acceptance. We also identified complex interactions between adults’ post-diagnosis identity development and support experiences as they resolved the dilemma between self-acceptance and a desire to change. Findings have important implications for services working with autistic adults and their families.
... Conversely, the neurodiversity movement has shifted this lens to one that promotes autism as a natural and positive variation of human development (Kapp et al., 2013;Sinclair, 1999). Alternate avenues of online research can lead to autism self-advocacy blogs and groups which provide a more positive strengths-based view of autism, as well as a sense of community (Bagatell, 2010;Harmens et al., 2022). Therefore, depending on where autistic people learn about autism, they could be exposed to information varying in accuracy or perspective about autism, which has the potential to impact their understanding of autism, and how they include this in their sense of identity. ...
... We predict that learning from the media or movies could include more inaccurate and stigmatised information (e.g., Jones & Harwood, 2009) and as such would be associated with increased internalised stigma and lower autism knowledge and identity. We predict that learning from online sources and autism advocates could be more likely to include information from a positive neurodiversity perspective (Bagatell, 2010;Harmens et al., 2022) and as such would be associated with more positive aspects of autism identity. ...
People on the autism spectrum can learn about autism from various sources, likely differing in the information, portrayal, and discussion they offer. The present study investigates where autistic people learn about autism, and whether their information source is associated with their level of autism knowledge, perceptions of stigma, and development and expression of an autism identity. A survey of 198 Australian adults with an autism diagnosis showed that learning about autism from conventional sources (e.g., professionals, parents) was associated with more internalised stigma, lower endorsement of special abilities and autism identity, whereas online blogs and social media showed the opposite pattern as well as more accurate knowledge of autism. The findings raise questions about how authoritative sources of information discuss autism.
... Studies have highlighted autistic peers as a valuable source of support after adulthood autism diagnosis, which may occur through formal support groups or informally through personal connections and online communities (Jantz, 2011;Tan, 2018). Since the 1990s, there has been an emergence of informal autistic peer communities offering social connection, support, and advocacy (Bagatell, 2010;Davidson, 2008). In these groups, autistic characteristics are normalised and accepted as part of a shared cultural identity (Bagatell, 2010;Davidson, 2008). ...
... Since the 1990s, there has been an emergence of informal autistic peer communities offering social connection, support, and advocacy (Bagatell, 2010;Davidson, 2008). In these groups, autistic characteristics are normalised and accepted as part of a shared cultural identity (Bagatell, 2010;Davidson, 2008). In qualitative studies, late-diagnosed adults described informal connections with autistic peers as a positive consequence of diagnosis that helped foster a sense of belonging (Lewis, 2016b;Tan, 2018). ...
This study aimed to explore experiences of support after adulthood autism diagnosis. In this mixed-methods survey study of 137 adults, we found that most common formal supports received were counselling and mental health. Common unmet support needs were sensory sensitivities and accessing other services. Cost, lack of information, and fear of not being taken seriously were common barriers. Informal support was mainly helpful for self-understanding and emotions toward diagnosis. Qualitative findings included difficulties accessing formal support, need for practical quality-of-life supports and support from autistic peers and online communities. Based on these findings, future development of supportive interventions should address unmet needs, improve access, and explore the integration of autistic peer support and online support into formal services.
... Être en connexion avec des gens ayant des expériences vécues et partagées peut avoir un impact positif sur le bien-être et améliorer la capacité de se défendre soi-même, de se revendiquer (Haney & Cullen, 2017;Kapp, 2020). Les mouvements de défense des droits des personnes handicapées et d'autodéfense ainsi que l'accès généralisé à Internet ont contribué à la formation de communautés autistes (Bagatell, 2010), dont les membres entrent en contactent par le biais des médias sociaux (e.g., le hashtag #ActuallyAutistic), des plateformes de jeux, des blogs, des forums de discussion et des groupes de revendication. Les communautés autistes (e.g., parents autistes, personnes autistes de couleur, personnes autistes de genre différent) sont une source précieuse d'acceptation et de fierté pour les personnes autistes qui sont souvent confrontées à la discrimination et à la stigmatisation ailleurs (Bagatell, 2010). ...
... Les mouvements de défense des droits des personnes handicapées et d'autodéfense ainsi que l'accès généralisé à Internet ont contribué à la formation de communautés autistes (Bagatell, 2010), dont les membres entrent en contactent par le biais des médias sociaux (e.g., le hashtag #ActuallyAutistic), des plateformes de jeux, des blogs, des forums de discussion et des groupes de revendication. Les communautés autistes (e.g., parents autistes, personnes autistes de couleur, personnes autistes de genre différent) sont une source précieuse d'acceptation et de fierté pour les personnes autistes qui sont souvent confrontées à la discrimination et à la stigmatisation ailleurs (Bagatell, 2010). Les membres de communautés autistes offrent et reçoivent des informations en rapport à l'autisme et des conseils, une compréhension et une validation des expériences vécues partagées (Mantzalas et al., 2021;Raymaker et al., 2020). ...
Nous proposons ici la traduction d'un article sur une modélisation du phénomène de burnout autistique. Présentement dans le cadre d'une recherche participative avec des adultes présentant un TSA. Le modèle présenté ici est développé ; il est le premier à ma connaissance et il peut servir dans divers contexte et à différents âge.... Je remercie les auteurs (et l'éditeur) des échanges que cette traduction a généré.
Résumé français :
La recherche qualitative antérieure indique que les personnes avec un autisme font communément l'expérience d'un burnout (épuisement) autistique et que ce dernier s'associe à des conséquences négatives significatives à l'égard de leur santé mentale, leur bien-être, et leur qualité de vie, y compris les tendances suicidaires. Les résultats obtenus jusqu'à présent suggèrent que les facteurs associés au fait d'être autiste et le manque généralisé de sensibilisation à, et d'acceptation de, l'autisme dans la société contribuent à l'apparition et à la récurrence de l'épuisement autistique. En prenant appui sur les descriptions d'adultes avec un autisme de leurs expériences vécues, nous proposons un modèle conceptuel de l'épuisement autistique (MCEA 1), qui décrit une série de relations hypothétiques entre le risque identifié et les facteurs de protection qui peuvent contribuer à, ou tamponner, l'épuisement autistique. Le cadre théorique de ce MCEA repose sur le modèle socio-relationnel du handicap et le paradigme de la neuro-diversité, le modèle contraintes-Ressources au travail de l'épuisement professionnel et la théorie de la conservation des ressources. Le MCEA offre une perspective holistique pour comprendre les facteurs individuels, sociaux et environnementaux qui peuvent influencer l'épuisement autistique via des voies directes et indirectes variées. La recherche sur le burnout autistique n'en est qu'à ses balbutiements et le MCEA pose une fondation vis-à-vis d'explorations futures de cette condition.
Résumé profane : Bien que les personnes avec un autisme soient nombreuses à décrire l'expérience qu'ils ont d'un burnout (d'un épuisement) autistique, il n'y a eu que peu d'études sur ce thème. À partir des descriptions d'expériences vécues de personnes autistes, nous avons développé un modèle conceptuel pour explorer comment divers facteurs de risque et de protection peuvent interagir pour contribuer à, ou prévenir, l'épuisement autistique.
... autistic culture must inform ethical decision making in autism research (Bagatell, 2010) to avoid cultural othering and inhumane experiments previously inflicted (Botha, et al., 2022;Gernsbacher, 2007). I am reflexive about being a non-autistic researcher with autistic participants: historically, this power dynamic has contributed to medicalisation and dehumanisation (Chown et al., 2017). ...
... Our work embraces the neurodiversity perspective, acknowledging the diverse abilities and experiences of autistic individuals. While there are common traits and shared experiences of trauma and vulnerability, there is also significant diversity in thinking, behavior, and needs amongst autistic people (Blume et al. 2021;Bagatell 2010). Along with recognizing the challenges associated with autism, viewing autism as a social identity intersecting with other aspects of an individual's identity (Grinker 2020) and understanding how these factors shape each autistic person's unique experience (Nikolova-Fontaine and Egilson 2023) helps researchers better identify personal needs and strengths of each autistic individual while acknowledging the vulnerable position that autistic people often share. ...
... These systemic barriers not only negatively affect the seeking and delivery of necessary support but also reinforce social assumptions that contribute to the marginalization of parenting or caregiving to an autistic child. These underscore the necessity of social transformations and practices that will alleviate the conditions of people with autism and their families [40]. Several communities in Nigeria deal with system-related issues that continue to undermine equal opportunities for autistic people in terms of support services as well as how society views autism [34,35]. ...
Introduction: This study examines the experiences and unmet needs of caregivers of children with autism spectrum disorder in Nigeria. With a 14.8% prevalence in Nigeria, autism spectrum disorder poses a heavy economic burden on society and the patients’ families, with limited social interactions and stigma. Despite this, the unmet needs and psychosocial burdens of autism spectrum disorder on caregivers have been understudied in Nigeria. The study contributes evidence and raises interest in this area of research.
Methods: This qualitative study was conducted among twenty-three purposively selected caregivers. Questions from the PREPARE and Zarit Burden Interview tools were adapted for the interview and discussion guides. Data were collected among caregivers of pupils in selected special needs schools in Cross River State, Nigeria. Inductive and deductive approaches were used for the analysis using NVivo 20 pro. The socio-ecological model was used to generate the themes and quotes.
Results: The study generated four themes and eleven sub-themes across four levels of the socio-ecological model. Findings from our study showed that caregivers of children undergo significant emotional distress, disbelief, and fear at the early stage of diagnosis. Furthermore, families and friends had difficulty comprehending or accepting their children’s diagnosis, which further created tension and misunderstanding. Socio-cultural contexts such as stigma and isolation were not uncommon in the society.
Conclusion: Given the burden of the psychological demand and stigma attached to caregivers and children with autism, there is an urgent need for a tailor-made intervention with the key interplay of individual, interpersonal, societal/institutional, and policy in Nigeria. Advocacy efforts and awareness chaired by caregivers should be strengthened across all levels of the society in Nigeria.
... Parallel to the idea of biodiversity, the term 'neurodiversity, ' first introduced by Judy singer in 1988, categorizes autism as part of the natural diversity of human brains. this perspective asserts that no brain type is 'normal, ' but rather that each is unique in its own way (Baron-cohen 2017, 746;singer 1998). in other words, this framework rejects the concept of a 'normal brain' and instead of taking a deficit approach, it describes differences in the way people think, behave, and perceive the world (Bagatell 2010;cage, Di Monaco, and Newell 2018;Grinker 2020Grinker , 2010Rios and costa andrada 2015). it also relies on social models of disability which present disability as a mismatch between the individual and the environment and point out the role of external factors in causing and constructing disability (shakespeare 2006). ...
... This may partially be explained through current autistic self-advocacy thinking, which sheds light on some of the progress made towards embracing all learners, as well as problematic practices that intend to create inclusion but which in fact create barriers (Bagatell, 2010;Churchill & Bernard, 2020;Manalili, 2021). Many practices rooted in 'inclusion' are designed by neurotypicals (NTs). ...
A tension between freedom and constraint is characteristic of improvisation practice and pedagogy, presenting challenges for teachers/workshop leaders. To create musical focus in ensemble improvisation, some sounds are encouraged, whilst others are edited out, ignored or marginalised. This article investigates improvised sounds as central or subaltern, asking how marginal sounds such as musical ‘heckles’ and off-task sounds can be accepted meaningfully into musical frameworks. I question what can be learned from subaltern sounds. How can power structures within the improvisation workshop be subverted by listening to sounds outside teacher-defined frames, and how can listening become inclusive without sessions descending into chaos?
... Autistic people diverge from neurotypical social and communication patterns which can make face-to-face interactions in larger groups challenging and exhausting (Davis et al., 2022). Online forums and social media platforms have emerged as a valuable social engagement alternative for many autistic individuals (Bagatell, 2010;Wayman, 2021). Social media platforms have also become a common source of information, and increasingly play a crucial role in news consumption (Matsa, 2023). ...
The aim of this study was to explore how autistic adults experienced using social media to find information about autism, and how they experienced online autistic communities. There is little research on the rationale why autistic people look for information on autism via social media, and on how such information is perceived from an autistic viewpoint. Twelve Norwegian autistic adults (aged 18–49 years) completed semi-structured interviews where they discussed social media and content specifically about autism and online autistic communities. Using reflexive thematic analysis, three main themes were developed. The themes were (1) Representation and Identity: An Online Journey; (2) An Unreliable, but Necessary Tool; and (3) Tensions and Discord. The findings indicated that even though social media was looked upon as an unreliable information source, the participants found information that helped them to learn about their experiences which had not been fully captured by the majority of the current research literature and online health sites. Also, social media groups for autistic people did not necessarily create a sense of community, as participants reported feeling alienated by hostile discussions. This study highlights the importance of having a greater variation and availability of information about autism online through official health channels.
Lay abstract
This study suggested that social media can provide important information about autism to autistic people. We interviewed 12 autistic adults (aged 18–49 years) and talked to them about the use of social media to find both general information and content specifically about autism, autism identity and online autistic communities. There is little research exploring how autistic people find information about autism on social media and how that makes them feel. Therefore, it is important to ask autistic people about their experiences with using social media to obtain content about autism. The 12 participants explained that when they searched for information about autism on the official health pages, they often felt that the information they found was insufficient and could not answer their questions. In addition, they searched on social media platforms for information about autism despite that they perceived social media as an unreliable source. On the social media platforms, many found content that was positive in relation to their autistic identities. The participants also found comfort in some of the forums and social media groups and received helpful advice. Nevertheless, some of the discussions were aggressive and the participants felt alienated, which did not provide a sense of community online. The findings from the study may advice on what is missing in the official pages about autism, and highlight the need to involve the autistic community in writing the content on such platforms.
... Any learning community could be baffled at SWAs's social and communication issues and misconstrued them as "weird", "abnormal" or "mischievous" behavior. As such, autistic individuals are treated as people with disabilities who need to be 'fixed'" (Bagatell, 2010). It goes without saying that traditionally people with autism have been stigmatized as people with an abnormality. ...
The number of students with autism (SWA) attending college has increased along with the growth of autism diagnoses in recent times. Individuals with autism, despite very strong potential academic advancement, often fail in college. Also, research on the academic and social life of college students with autism has been sparse. (American Psychiatric Association, 2013). The purpose of this study is to explore the lived experiences of students with autism in Mindanao State University-Iligan Institute of Technology (MSU - IIT), one of the biggest state universities in the Philippines thereby contributing to the existing literatures on autism and understanding SWAs better. Using semi-structured interviews to gather data and exploring the superordinate themes of academic and social life, this study hoped to address the following issues: 1) what is the academic performance of students with autism (SWA) who have sought a college degree in MSU - IIT; 2) what are the reported social experiences of these students?; and (3) what possible support program can be provided to help these students? Through phenomenological analysis, insights provided by participants revealed that autistic college students in MSU- IIT have the strong potential to succeed in their academic pursuits, but continually struggle with social issues that threaten to sustain their academic performance. Overall, results indicate the need for institutions of higher education like MSU - IIT to provide comprehensive supports, most importantly, in the social and emotional domains for students with autism (SWA) to succeed in academic environments.
... Some research does exist, however, intertwining sense-making processes with autistic individuals. For instance, scholars have found that autistic individuals understand autism as an integral pillar of their identity and that although they themselves conceptualize autism as value-neutral, they still indicate that autism overwhelmingly confers negative portrayals and stigma (Bagatell 2007(Bagatell , 2010Botha et al. 2022;Kapp et al. 2013). Further, some autistic people have reported vast challenges in dating and romance due to this overwhelming stigma within normative dating realms, which often leaves many autistic people feeling abnormal, devalued, and less desirable under these ableist structures of normality (Brosnan & Gavin 2021;Sasson et al. 2017;Someki et al. 2018). ...
Much attention has been paid to incel communities in recent years. Comprised of involuntary celibate individuals who are dissatisfied with their shared experiences of romantic and sexual rejection, incels blame women and the societal rejection of hegemonic masculinity as the cause of their grievances. Current scholarship has produced conflicting results regarding the prevalence of autism within incel communities when compared to the general population. At the same time, no research to date has explored the intersection of incels and autism using perspectives from individuals in the incel community. Using a critical autism lens, this present study thematically analyzes 20 online incel message boards to explore the sense-making of self-identified autistic incels. Findings indicate that incels’ internalized ableism of autism is employed to categorically justify the victimhood and entitlement that grounds their ideology. This weaponization of autism is then used to promote ableism and networked misogyny. Implications for understanding ableist and misogynistic beliefs associated with inceldom are provided.
... External supports also included self-directed use of technology, which aided motivation, executive function and social connection, especially in the context of COVID-19. Historically, technology has been fundamental in connecting autistic communities previously experiencing isolation and lacking a collective voice (Bagatell 2010). Recently, research has shown that autistic adults appreciate technology which "scaffolds" independence rather than aiming to reduce autistic traits (Zheng et al. 2022), reflecting the motivations of seeking support in the present sample. ...
... For autistic people, labeling their autism may lead to comparisons to their non-autistic peers and subsequent meaning-making of those differences (27,28). While autistic people may not initially assign negative attributions to their identity, societal norms and opinions can assign negative values to the labels and consequently propagate stigma towards this group of people (29). ...
Autistic people have long been conceptualized from a deficit-based model of disability, but recent self-advocates and scholars have asserted the importance of recognizing autism as both a disability and an important part of a person’s social identity. The autistic identity is subject to specific stigma and stressors beyond everyday discrimination and prejudice, which can have many downstream implications on mental health and well-being. Prior research on camouflaging has explained both quantitatively and qualitatively how autistic people conform to norms and mask their autistic traits to better fit in with non-autistic societal standards. Given this paradigm shift in understanding autistic peoples’ lived experiences, researchers must also begin to reshape the theories guiding their work in order to improve diagnosis, intervention, and supports. This review examines the extant research on identity-related stigma and camouflaging and their subsequent impacts on mental health outcomes in autism. A model is proposed integrating identity-based theories—specifically the social model of disability, social identity theory, and minority stress model—to explain relationships across research areas and better explain the experiences of autistic people. We discuss how identity-based theories can be applied in autism research to better understand the impacts of stigma and camouflaging on autistic peoples’ lived experiences and reduce disparities in their mental health outcomes.
... It has been demonstrated that parental beliefs about ASD can influence their intervention preferences (Blacher et al. 2014;Stahmer et al. 2011). A study by Bagatell (2010) revealed that in Western culture, the biomedical community has a strong influence on perceptions of ASD, and they tend to see it as a problem that requires "fixing." On the other hand, in Indian culture, where beliefs in karma and fate/destiny are more prevalent (Gabel 2004), and therefore, ASD matters are treated in accordance with traditional Indian culture. ...
Although research on children with autism, their parents, and family-provider relations has substantially increased around the world, there has been a paucity of qualitative studies conducted on autism in developing countries or cross-cultural contexts. This qualitative study aims to explore parents’ experiences of raising a child with autism, as well as how autism is framed in everyday cultural contexts in Bangladesh. Using a semi-structured interview schedule, the study conducted interviews with four fathers and eighteen mothers of children with autism. The findings of this study reveal that parents who care for a child with autism experience emotions of sadness, frustration, and isolation. Despite the immense challenges that come with raising a child with autism, many parents report that their stress and anxiety are compounded by the stigma, avoidance, and disparaging remarks they receive from their own family members and neighbors. The findings of this study may help researchers and healthcare professionals understand better as to how local cultural beliefs, experiences, and understandings influence, how parents and families care for and view the development of their children with autism, and how they look for support and treatment services.
... As such, for the purposes of this manuscript, neurodiversity movement is used to refer to the movement as it relates to autism. As applied to autism, the neurodiversity movement views autism as naturally occurring diversity in neurology, which requires no cure or prevention (Bagatell, 2010). Ultimately, the neurodiversity movement "seeks to help families with advocacy for acceptance, understanding, and support that can positively impact people across the autism spectrum and their parents" (Kapp, 2020, p. 5). ...
The overwhelming majority of professionals who serve the autistic community using applied behavior analysis (ABA) do so from a place of caring and compassion to improve the quality of life for the individuals they serve. As researchers and practitioners, the authors feel it is essential to acknowledge concerns that have arisen from neurodiversity activists and their families surrounding the effects of ABA on the autism population and claims that the goals and strategies in ABA are ableistic. This paper will highlight major issues neurodi-versity advocates have reported regarding ABA, examine areas considered to be ableistic, and discuss ways ABA has positively impacted society while emphasizing the importance of listening and responding to expressed concerns of stakeholders.
... For the first time, this set the groundwork for the development of a "Culture of Asperger's," the boundaries and norms of which were identified by the members of the culture itself. At the same time, there was a growing revolution in computer technology inclusive of the Internet (Bagatelle, 2020) which could bring members of this culture together from distant locations. There was now a segment of the autistic community who could, and would, readily speak for themselves and who had access to similar individuals via Internet groups to advocate for public recognition of autistic rights. ...
... At the risk of oversimplifying, we can identify two strongly opposed camps: one that views autism as a deficit to be cured or at least ameliorated as much as possible; and another that advocates for neurodiversity, treating autism as a cognitive and behavioural difference rather than a disorder. 1 The first camp is popularly associated with parents' groups and the biomedical establishment, whose members are commonly assumed to be proponents of the deficit/cure-model (e.g., Mishler, 1984), whereas the second group is made up of autistic self-advocates and their allies (Bagatell, 2010;Hart, 2014;Kapp et al., 2013;Ortega, 2009). For many in this second camp, autism is embraced as an identity, a way of being in the world accompanied by challenges but also unique strengths (cf. ...
This article follows Blaxter’s foundational call for a sociology of diagnosis that addresses the dual aspects of diagnosis‐as‐category and diagnosis‐as‐process. Drawing on video recordings from an autism clinic, we show how the process of attaching the diagnosis to a child involves interactions between clinicians, parents and children, and that in the course of such interactions, a diagnostic category officially defined in terms of deficits can instead be formulated in terms of valuable social and cognitive differences. More specifically, we show that the child’s age is crucial for how clinicians formulate the diagnosis: with younger children, clinicians treat autism exclusively as a deficit to be remedied, whereas with older children, clinicians may treat autism either as a deficit or as a social‐cognitive difference. Further, because older children are often co‐recipients of diagnostic news, we find that clinicians carefully manage the implications such news may have for their self/identity. Finally, we suggest that (1) the equation of a diagnostic category with dysfunction is achieved in interaction; (2) the meaning of a diagnosis may vary with characteristics of its recipients; and (3) that meaning can be worked up by clinicians and recipients in ways that centre difference rather than deficit.
... Autistic autobiographers have coined the term interactive stimming-producing rhythmic behaviors together with others-that they describe as an empathetic experience of belonging and relatedness . Interactive stimming has been depicted as a "form of natural autistic social behavior" (Bascom, 2012, p. 25) that is a valuable mode of self-expression, a powerful vehicle for communication, and a bridge to forming friendships and establishing communities (Bagatell, 2010;Coo, 2018). Thematic analyses of these autobiographies reveal that physical attunement and synchronicity with others are profoundly experienced and emotionally felt . ...
This dissertation surfaces the embodied interactions of non/minimally-speaking autistic individuals as they navigate daily life in a speaking, neurotypical world. Through integrating: (1) reflexive video-based fieldwork; (2) microanalyses of embodied interaction; and (3) the design and development of novel tools for communication, this body of work critiques the pervasive foregrounding of the stream of speech in daily interaction and traditional alternative augmentative communication (AAC) design. The embodied interactions of non-speaking autistic individuals are likened to the cultural practice of improvisation, where multisensory exploration and the creation of new structures is co-achieved by multiple interactants. This dissertation bears implications for the design of therapeutic interventions for the communicative wellbeing of non-speaking autistic individuals. Non-speaking autistic individuals have spent too long accommodating to us. It is time we—speaking interlocutors—began listening to them.
... With the rise of autistic advocates in the neurodiversity movement (Ne'Eman, 2010), autistic advocates are calling for the inclusion of autistic collaborators in the research process to have their experiences included and reduce unethical research practices in all stages of research (Bagatell, 2010;Nicolaidis et al., 2015). The discourse of autism research is also impacted by the evolution of the definition of autism -from a pathological psychological condition, to a neurological disease, to a neurological difference and disability not in need of a cure (Bumiller, 2009). ...
Introduction
Research in music therapy and autistic people to date has predominantly focused on communication and social interaction outcomes. The purpose of this exploration was to explore the lived experiences of young autistic adults in Nordoff-Robbins Music Therapy. To our knowledge, the body of research that seeks to understand participants’ perspectives regarding their experiences of music therapy and the goals they want to pursue is limited.
Method
Four autistic young adult men who had received at least 6 months of Nordoff-Robbins music therapy services at the Nordoff-Robbins Center for Music Therapy at New York University participated in this study. Each participant engaged in four to five interview sessions to share their experiences of Nordoff-Robbins Music Therapy and the role it plays in their life. Interviews were analyzed using the IPA method. A summary of the results was shared with each participant to ensure sensitivity to and accuracy of their lived experiences.
Results
Three themes emerged from the analysis: (1) Participants attend Nordoff-Robbins music therapy to develop their musicianship and personal selves; (2) participants create meaningful relationships with their peers, music therapists, and music; and (3) participants bring their sociocultural identities into music therapy sessions.
Discussion
Participants’ responses led to a critical reexamining of “the music child”, challenging music therapy research and practice agendas of normalizing autistic social and communication behaviors, and suggest the need for more research that collaborates and centers the autistic community.
... Correspondingly, many reasoned that person-first language should not be used as autism cannot and should not be separated from them, and such language inadvertently conveys that autism is a 'defect' to be removed. These sentiments chime with previous work (Bagatell, 2010;Bury et al., 2020;Davidson & Henderson, 2010;Hurlbutt & Chalmers, 2002;Kenny et al., 2016;Botha et al., 2021) and reflect a growing movement amongst activists and scholars arguing against person-first terminology. Rather, the autistic participants responded that language should be identity-first as autism is an integral part of who they are, just like their ethnicity, gender or sexuality. ...
Over the past two decades, there have been increasing discussions around which terms should be used to talk about autism. Whilst these discussions have largely revolved around the suitability of identity-first language and person-first language, more recently this debate has broadened to encompass other autism-related terminology (e.g., 'high-functioning'). To date, academic studies have not investigated the language preferences of autistic individuals outside of the United Kingdom or Australia, nor have they compared levels of endorsement across countries. Hence, the current study adopted a mixed-methods approach, employing both quantitative and qualitative techniques, to explore the linguistic preferences of 654 English-speaking autistic adults across the globe. Despite variation in levels of endorsement between countries, we found that the most popular terms were similar-the terms 'Autism', 'Autistic person', 'Is autistic', 'Neurological/Brain Difference', 'Differences', 'Challenges', 'Difficulties', 'Neurotypical people', and 'Neurotypicals' were consistently favored across countries. Despite relative consensus across groups, both our quantitative and qualitative data demonstrate that there is no universally accepted way to talk about autism. Our thematic analysis revealed the reasons underlying participants' preferences, generating six core themes, and illuminated an important guiding principle-to respect personal preferences. These findings have significant implications for informing practice, research and language policy worldwide.
... Being physically co-present with others with whom intercorporeal relations do not unfold smoothly may work to negatively impact a social encounter, as well as result in experiences of anxiety and social doubt. Indeed, there is evidence that autistic communities have flourished on various online platforms (Bagatell, 2010;Pinchevski & Peters, 2016). ...
During the Covid-19 pandemic we increasingly turned to technology to stay in touch with our family, friends, and colleagues. Even as lockdowns and restrictions ease many are encouraging us to embrace the replacement of face-to-face encounters with technologically mediated ones. Yet, as philosophers of technology have highlighted, technology can transform the situations we find ourselves in. Drawing insights from the phenomenology of sociality, we consider how digitally-enabled forms of communication and sociality impact our experience of one another. In particular, we draw attention to the way in which our embodied experience of one another is altered when we meet in digital spaces, taking as our focus the themes of perceptual access, intercorporeality, shared space, transitional spaces, and self-presentation. In view of the way in which technological mediation alters various dimensions of our social encounters, we argue that digital encounters constitute their own forms of sociality requiring their own phenomenological analysis. We conclude our paper by raising some broader concerns about the very framework of thinking about digitally and non-digitally mediated social encounters simply in terms of replacement.
... Digitally mediated spaces (e.g., online platforms like WhatsApp or online games like World of Warcraft or Elder Scrolls) modulate the structure and dynamics of social spaces and regulate our normative expectations of how interaction should proceed. Studies have drawn attention to how autistic communities have flourished in online spaces (Bagatell, 2010). More than two decades ago, it was noted that "in cyberspace, many of the nation's autistics are doing the very thing the syndrome supposedly deters them from doing-communicating" (Blume, 1997, p. 6). ...
در چند ســال اخیر، اختالل طیف اوتیســم با دامنه گســتردهای از نابهنجاری های رفتاری، شــناختی و عصبی
به عنوان یک موضوع اجتماعی و پزشکی در فضای مطالعاتی و انتقادی معلولیت مورد توجه قرار گرفته است. یکی
از شــاخه های اصلی این مطالعات موضوع تالقی هنر و معلولیت اســت که در دو منظر متمایز قابل بررسی است:
هنردرمانی و هنر معلولیت. این مقاله با اســتفاده از روشتوصیفی- تحلیلی و گردآوری دادهها از طریق اســناد و
منابع مکتوب صورت گرفته اســت. با تاکید بر مفهوم تنوع عصبی -که اختالالت عصبی را نــه بهعنوان اختالل که
به مثابه تنوع در فهم انســان مطرح می کند بهدنبــال چگونگی تبیین این دو چارچوب هنــری و تفاوتهای آن ها
در مواجهه با افراد طیف اوتیسم اســت و به این پرســش کلیدی پاســخ میدهد که چگونه هنر معلولیت می تواند
مرزبندی های خلق شده توســط هنردرمانی از جمله: دیگری بودن، سلسله مراتب قدرت، تواناساالری و ناتوان-
انگاری را از میان بردارد؟ نتایج بهدســت آمده نشــان میدهد: هنر معلولیت با عاملیت قرار دادن شخص معلول
به عنوان هنرمند؛ قوت، هویت و توانمندی های او را مطرح می کنــد. بدینترتیب با از بین بردن مرزبندیها، این
هنرمند، آثار و توانایی هایش از سوی جامعه هنری به منزله هنر رســمی پذیرفته شده، در گالری ها، نمایشگاهها
و موزه ها و ... به نمایش درمی آید و حتی در مواردی با عنوان پیشــگام ســبک های هنری شناخته میشود. این
نوع برداشــت از هنر در مقابل هنردرمانی قرار می گیرد که به صورت سیســتماتیک و اغلب در مراکز درمانی انجام
می شود، هنر را وسیلهای برای بهبود و توانبخشی میداند، شخص معلول را به عنوان دیگری قلمداد کرده، پیوند
او با درمانگر را براساس روابط قدرت شکل میدهد.
Background and aims
Autistic children can experience challenges in making and maintaining friendships, and middle childhood (ages 6–12) may be particularly challenging as social networks become more complex. However, a large proportion of research into these experiences is based on adult reports or focuses on the experiences of adolescents, meaning that the voices of younger children are absent. Due to the exclusion of younger children from research, we have a limited understanding of their first-hand experiences of their friendships and the support they receive, which has implications for friendship support and wellbeing. This study aimed to amplify the voices of younger autistic children to explore their first-hand experiences of friendships and highlight areas of social support which may be most beneficial to primary-aged autistic children.
Methods
This study used novel creative methods to support interviews with 19 autistic primary school-aged children to explore their experiences of friendship. Parent-led interviews and scrapbooks supported the children in discussing the challenges and strengths of their friendships.
Results
Children discussed the challenges and strengths of their friendships including the impact of social norms on the need to have friends and their support needs in this area of life. Children also discussed gaps in their current friendships and how they would like to see these filled. It was clear that not all children required or wanted neurotypical-style friendships, with many valuing companionship and gameplay over intimacy. Analysis highlighted the heterogeneity of autistic children's friendships, especially in relation to gender and age, calling for more tailored and individualized support.
Conclusion and implications
Results from the current study show that autistic children can and do have successful friendships but that these friendships may differ from those of their non-autistic peers. The study further adds to the existing literature by showing that younger autistic children can be included in research by using differentiated, accessible and creative methods, and that they are able to voice their opinions on matters surrounding support. It also calls for a tailored approach to supporting autistic children in school and speaking with children to give them autonomy over the support they want to receive.
Background:
Controversy regarding the neurodiversity movement (NDM), the social and medical models of disability, autism intervention goals, and causal attributions of disability contribute to divides in the autistic and autism communities. The present study investigates the views of autistic and non-autistic autistic and autism community members on these topics. We explored whether these views are shaped by having close relationships to autistic people with intellectual disabilities and nonspeaking autistic people.
Methods:
504 autistic and autism community members (278 autistic, 226 non-autistic) completed an online survey about theoretical models and intervention goals. Participants reported whether they had one or more close relationships with nonspeaking autistic people (NSA), autistic people with intellectual disabilities (ID), neither, or both.
Results:
Overall, there was considerable consensus regarding desired intervention goals: normalization goals were generally opposed, while participants generally supported well-being, societal reform, supportive environment, and adaptive skill goals. While autistic participants reported less support for normalization and adaptive skills goals than non-autistic participants, they expressed somewhat more enthusiasm for societal reform and supportive environments than non-autistic people. Autistic people supported the NDM more and the medical model less than non-autistic people. Those close to autistic people with ID gave higher ratings to adaptive skill goals. On average, participants not close to autistic people with ID saw the challenges of those without ID as being slightly more due to environmental/social factors than the challenges of those with ID; there was no such statistical difference among those close to autistic people with ID.
Conclusion:
Further research investigating community views, with inclusion of more autistic people with intellectual disabilities and nonspeaking autistic people themselves, is needed, but the results of this study suggest that the broader autistic and autism communities see NDM-consistent intervention goals as appropriate for all autistic people, including nonspeaking autistics and those with intellectual disabilities. As autism interventions have often pursued unpopular normalization goals, this suggests directions for reform.
Neurodivergence is having ‘a mind that functions in ways which diverge significantly from the dominant societal standards of “normal”’ (Walker, 2021, p. 33; Neuroqueer Heresies: Notes on the Neurodiversity Paradigm, Autistic Empowerment, and Postnormal Possibilities). The neurodiversity paradigm reframes the medical model of neurodivergence within the social context of disability (den Houting, 2018 [Autism, 23, 171]; Dwyer, 2022 [Human Development, 66, 73]). Research converges counselling and neurodiversity in a disorder‐specific context, for example, the wide range of barriers of access to counselling that autistic individuals face (Hallett & Kerr, 2020 [You need support, validation, good coping skills. You need and deserve acceptance]). More recent literature points towards the need for a flexible, clear approach to neurodivergence‐informed counselling (Bolton, 2023b [Three ideas in person‐centered, neurodivergent‐affirming therapy]; Chapman & Botha, 2022 [Developmental Medicine & Child Neurology, 65, 310]; Pantazakos, 2023 [Counselling and Psychotherapy Research]). This research aimed to explore whether lived experiences of neurodivergent individuals within counselling were accessible, validating and affirming, in particular, regarding reasonable adjustments, communication and environment. An inductive, qualitative approach was adopted. Five individuals participated in semi‐structured interviews, which were analysed following a six‐phase approach to thematic analysis. Six main themes were found: (1) Feelings of frustration and confusion at language used in counselling; (2) Feelings of clarity and validation in language; (3) Feelings of overwhelm due to uncertainty and masking; (4) Feeling understood, heard and able to self‐advocate; (5) The need for a safe, secure sensory environment and accommodations made; and (6) General accessibility and practicalities. Recommendations for practice include amending the counselling contracting process and sensitivity to the communication and sensory needs of each individual client. Further research may wish to explore specific details of the present, and other emergent, neurodiversity research in more detail.
Social interactions are postulated as a crucial part of socioemotional development and significant outcomes in life (Bauminger et al., 2003; Healy et al., 2013). There are different types of social interactions that we experience during our life, like caregiver-child, peer, and teacher-student interactions. Historically, social interactions have been promoted from an ableist perspective in autistic populations (Nario-Redmond, 2020). These modes of interactions expect individuals to conform to neurotypical social exchanges creating a great source of negative experiences for autistic individuals, which translates into stigma and mental health issues due to the impact on affectivity capabilities.Social interactions and their impact on socioemotional development have been stated as an essential mainstay for learning. Learning occurs when meaningful interactions develop, which, in turn, happen in specific shared activities and employ multiple resources.In this chapter, we provide a detailed description of how social interaction, affectivity, and learning interplay in the development of the autistic population. We discuss how the classical development and support models lack the understanding of the relevance of meaningful affection-based interactions to promote learning. We propose, as an alternative, the use of socio-ecological models (Bronfenbrenner & Morris, 1998; Vidal et al., 2018; Vidal et al., 2022) to support a positive learning experience paradigm, promoting the development of social interactions in autistic populations.KeywordsAffectivityLearningAutismSocial interactionsSocioemotional development
The experience of the many autistic children who attend inclusive early childhood education settings is largely shaped by the knowledge and attitudes of the educators who support them. Autistic children from under-represented ethnic groups, such as autistic Māori, are likely to face additional challenges and educators need to consider strategies to support their cultural development. We conducted in-depth, semi-structured interviews with 12 educators with recent experience supporting tamariki takiwātanga Māori (autistic Māori children) in inclusive early childhood settings. Data were analysed using reflexive thematic analysis resulting in three themes and seven subthemes. Overall, participants’ understandings of autism aligned with the neurodiversity perspective, and there were similarities between neurodiversity and Māori perspectives. Participants wanted more training and resources drawn from a Māori worldview and available in te reo Māori (the Māori language). These findings have important implications for practice and future research.
Lay Abstract
The knowledge and attitudes of educators can have a strong influence on the experiences of autistic children who attend inclusive early childhood settings. Autistic children from under-represented ethnic groups, for example, tamariki takiwātanga Māori (autistic Māori children), are likely to face extra challenges and educators need to consider ways to support their cultural development. For this study, we interviewed 12 educators with recent experience supporting tamariki takiwātanga Māori in inclusive early childhood settings. We constructed three themes and seven subthemes from the interview data. We found that educators’ understandings of autism were mostly in line with the neurodiversity perspective, which views autism as a difference, not a disorder. We also found similarities between the neurodiversity perspective and Māori perspectives of autism and a need for more training and resources based upon a Māori world view and available in te reo Māori (the Māori language).
There is growing interest in both open and participatory practices in autism research. To date, however, these practices have tended to be considered separately. In this paper, we outline the value of both open and participatory approaches to the autism research field, highlighting key points of overlap. We propose three core principles underpinning open and participatory autism research: (1) the need for adequate expertise and infrastructure to facilitate high quality research, (2) the need for a greater degree of accessibility at all stages of the research process, and (3) the need to foster trusting relationships between the autistic and research communities. There are various challenges and opportunities of adopting open and participatory principles in autism research. We hope our principles support researchers to embed these approaches more fully within their work.
Autism spectrum disorder (ASD) is a neurodevelopmental disorder marked by differences in social communication and the presence of restricted and repetitive patterns of behaviors and interests [American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders]. The prevalence rate of autism has increased in recent years, now occurring in 1 in 44 children in the United States [Maenner et al. (2021). Prevalence of autism spectrum disorder among children aged 8 years – Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2018. Surveillance Summaries, 70(11), 1–16. https://doi.org/10.15585/mmwr.ss7011a1 ]. As more children are identified as autistic, more healthcare and educational professionals are involved in the care of these unique individuals. Understanding the challenges, as well as the strengths, of individuals on the autism spectrum is paramount to promoting the well-being of these children. One framework that aids in better understanding and supporting autistic individuals is the neurodiversity paradigm. The purpose of this practitioner review is to: (1) provide a broad overview of the tenets of the neurodiversity paradigm and (2) provide recommendations for neurodiversity affirming service provision.
Objectives: Despite suggestions of strengths and abilities of autistic people, it has been an underexplored area in autism research, the primary focus of which has been on examining differences and atypicalities as deficits rather than strengths. Understanding the self-reported impediments via first-person accounts of autistic adults for facilitating the strengths is an important prerequisite for an in-depth comprehension of the unique diversities and potentialities of autistic people, and roadmap development.
Methods: The study is based on qualitative phenomenological inductive thematic analysis through in-depth interviews with 10 verbally- and cognitively-able autistic adults, following purposive and snowball sampling.
Results: The impediments at home, school, and communities are presented through the five inductively extracted themes. Additionally, the study proposes future pathways for fostering an effective environment to nurture the innate potentialities of autistic people via a strength-focused lens.
Conclusion: The study endorses the paradox of strength and atypicalities and advocates a shift from a deficit-focused approach to a strength-focused approach of support, and promotes the neurodiverse model of acceptance and embrace.
Autism is a heterogeneous neurodevelopmental disorder for which a large variety of treatments are offered, including alternative treatments. Vaccine-related treatments (treatments falsely claiming to cure autism by addressing its alleged cause: routine childhood vaccines such as MMR) continue to be offered worldwide, despite widespread evidence against the effectiveness and even possible harm related to these treatments. We analysed the use of alternative treatments in two studies: a survey study (N = 1989, autistic adults and parents/legal representatives of individuals with autism) and a clinical care study (N = 4520, patient files from a treatment center for autism). Both studies found a relatively high frequency of alternative treatments (23.0–30.7%) – in children even 46.4% -, mostly in combination with mainstream treatment. In the survey study vaccine-related treatments were used by 3.2% of all individuals with autism (and 6.7% of autistic children), and alternative treatment use was predicted by co-occurring diagnoses, younger age of diagnosis and mainstream treatment use. In the clinical care study, patients who had received treatment from a homeo-/osteopath more often had highly educated parents from Dutch/Western background and were more often enrolled in special education. Alternative treatments are widely used and should be included in treatment guidelines. Parents, practitioners and individuals with autism should be both advised and warned about the benefits and risks of these treatments. More research is needed to better understand the choice for and effect of alternative treatments for autism, and mainstream care should be improved.
Mikhail BAKHTIN's ideas of heteroglossia, voice, utterance, and dialogism are important theoretical concepts for investigating relations between social and personal facets of human development, especially the development of identity or self-understandings in cultural worlds. Yet methodological and analytic procedures for discerning voices in individuals' self-representations are relatively unexplored. In this paper, we discuss how BAKHTIN's ideas can be used in a type of narrative analysis that focuses on the construction of individual identity and positionality within cultural worlds. We use an empirical example from one Nepali adolescent's narration of self, collected as part of an extensive ethnographic study in a rural community in Nepal, to illustrate the conjunction of theory and method in discerning how individuals orchestrate the voices from their cultural and social worlds to create distinctive images of self and to envision their (future) social positions. Our examination of this narrative indicates that self processes orchestrate and transform social voices for past, present and future forms of self-understandings and cultural meanings. The primary foci in this paper are the theoretical concepts, methods and analysis that aid the researcher in discerning and understanding these voices and their orchestrations.
URN: urn:nbn:de:0114-fqs0103187
The organization of taking turns to talk is fundamental to conversation, as well as to other speech-exchange systems. A model for the turn-taking organization for conversation is proposed, and is examined for its compatibility with a list of grossly observable facts about conversation. The results of the examination suggest that, at least, a model for turn-taking in conversation will be characterized as locally managed, party-administered, interactionally controlled, and sensitive to recipient design. Several general consequences of the model are explicated, and contrasts are sketched with turn-taking organizations for other speech-exchange systems.
Four boys with autistic-like behavior were treated for self-stimulatory behavior with three different treatment procedures--time out, differential reinforcement of other behavior (DRO), and overcorrection. All four boys showed a rapid response to the overcorrection procedure. Three boys demonstrated some evidence of decrement in responding with time-out. During the DRO procedure, one showed a modest decrease, two showed no change, but one exhibited a consistent increase in responding under this condition. A multiple baseline applied to one of the subjects failed to reveal any generalization of suppression from one setting to another. A strong but not perfect relationship was found between a frequency and a duration measure of self-stimulation. There was some evidence of negative side effects for one boy during overcorrection and for another during time-out. None of these negative side effects was enduring. There was also some indirect evidence that overcorrection facilitated appropriate play.
Occupational science is a new scientific discipline that is defined as the systematic study of the human as an occupational being. A doctoral program in occupational science has been established at the University of Southern California, Los Angeles. With its emphasis on the provision of a multidimensional description of the substrates, form, function, meaning, and sociocultural and historical contexts of occupation, occupational science emphasizes the ability of humans throughout the life span to actively pursue and orchestrate occupations. In this paper, occupational science is described, defined, and distinguished from other social sciences. A general systems model is presented as a heuristic to explain occupation and organize knowledge in occupational science. The development of occupational science offers several key benefits to the profession of occupational therapy, including (a) fulfillment of the demand for doctoral-level faculty members in colleges and universities; (b) the generation of needed basic science research; and (c) the justification for and potential enhancement of practice.
Few studies have been conducted to elucidate the psychological distress of terminally ill cancer patients. This study attempted to determine the prevalence of adjustment disorders (AD), major depression (MD), and post-traumatic stress disorder (PTSD) among terminally ill cancer patients, to identify factors that contribute to them, and to determine how they change longitudinally.
Consecutive terminally ill cancer patients were recruited. Patients were assessed for psychiatric disorders by structured clinical interview twice: once at the time of their registration with a palliative care unit (baseline), and again at the time of their palliative care unit admission (follow-up). Possible contributed biomedical and psychosocial factors were evaluated.
The proportions of patients diagnosed with AD, MD, and PTSD at baseline (n = 209) were 16.3%, 6.7%, and 0% respectively, whereas at follow-up (n = 85), 10.6% were diagnosed with AD and 11.8% with MD. Lower performance status, concern about being a burden to others, and lower satisfaction with social support were significantly associated with AD/MD at baseline. There were changes in the diagnosis of AD and MD in 30.6% of the patients. Only the Hospital Anxiety and Depression Scale at the baseline was significantly predictive of AD/MD at follow-up.
The factors underlying psychological distress are multifactorial. Early intervention to treat subclinical anxiety and depression may prevent subsequent psychological distress.
The purpose of this qualitative research study was to understand a family's experiences negotiating family daily life and the meanings they ascribed to these experiences when they had a child with severe autism. In-depth, semistructured interviews were conducted with five family units. The interviews explored the meaning of the family's participation in daily life activities. The transcribed interviews were analyzed with a phenomenological method. The results emerging from this study indicate that families with children with severe autism may experience difficulty engaging in daily activities that hold positive meaning and rely on stringent patterns of routines that revolve around the child with autism to meet the demands of daily life.
This study compared the effects of occupational therapy, using a sensory integration (SI) approach and a control intervention of tabletop activities, on the frequency of self-stimulating behaviors in seven children 8-19 years of age with pervasive developmental delay and mental retardation. Daily 15-min videotape segments of the subjects were recorded before, immediately after, and 1 hour after either SI or control interventions performed during alternating weeks for 4 weeks. Each 15-min video segment was evaluated by investigators to determine the frequency of self-stimulating behaviors. The results indicate that self-stimulating behaviors were significantly reduced by 11% one hour after SI intervention in comparison with the tabletop activity intervention (p = 0.02). There was no change immediately following SI or tabletop interventions. Daily ratings of self-stimulating behavior frequency by classroom teachers using a 5-point scale correlated significantly with the frequency counts taken by the investigators (r = 0.32, p < 0.001). These results suggest that the sensory integration approach is effective in reducing self-stimulating behaviors, which interfere with the ability to participate in more functional activities.
This study describes a new caregiver-report assessment, the Sensory Experiences Questionnaire (SEQ), and explicates the nature of sensory patterns of hyper- and hyporesponsiveness, their prevalence, and developmental correlates in autism relative to comparison groups.
Caregivers of 258 children in five diagnostic groups (Autism, PDD, DD/MR, Other DD, Typical) ages 5-80 months completed the SEQ.
The SEQ's internal consistency was alpha' = .80. Prevalence of overall sensory symptoms for the Autism group was 69%. Sensory symptoms were inversely related to mental age. The Autism group had significantly higher symptoms than either the Typical or DD groups and presented with a unique pattern of response to sensory stimuli -hyporesponsiveness in both social and nonsocial contexts. A pattern of hyperresponsiveness was similar in the Autism and DD groups, but significantly greater in both clinical groups than in the Typical group.
The SEQ was able to characterize sensory features in young children with autism, and differentiate their sensory patterns from comparison groups. These unique sensory patterns have etiological implications, as well as relevance for assessment and intervention practices.
This study extends findings on the effects of intensive applied behavior analytic treatment for children with autism who began treatment at a mean age of 5.5 years. The behavioral treatment group (n = 13, 8 boys) was compared to an eclectic treatment group (n = 12, 11 boys). Assignment to groups was made independently based on the availability of qualified supervisors. Both behavioral and eclectic treatment took place in public kindergartens and elementary schools for typically developing children. At a mean age of 8 years, 2 months, the behavioral treatment group showed larger increases in IQ and adaptive functioning than did the eclectic group. The behavioral treatment group also displayed fewer aberrant behaviors and social problems at follow-up. Results suggest that behavioral treatment was effective for children with autism in the study.
Book review of Unstrange Minds: Remapping the World of Autism. By Roy Richard Grinker; New York, Basic Books, 2006, 340 pages, $26.95.
In the Air Let me start with prime-time TV. On Sunday, May, 4, I turned on Viper, a series built around a multi-ethnic crime fighting team who drive a bullet-proof high speed car from somewhere over the technological rainbow. This episode featured an autistic --the reason why I tuned in --who had seen a murder, but couldn't talk about it. He had also committed to memory the serial numbers of a secret Swiss bank account, the one with the data that would blow the case wide open, but couldn't divulge that, either. He was autistic. Getting information out of him was like safe-cracking. But he loved cars, adored them, knew every make, model, year. The show's futuristic auto was the gateway to his good heart and guarded mind, because more than anything, he wanted to go for a ride. There was nothing particularly new in this. Rain Man had already introduced us to the notion that autistics routinely come equipped with savant powers (though, in fact, only ten percent do), and that the average autistic is likely to possess what Leo Kanner (who diagnosed autism in 1943) called "islets of ability," areas of extreme competence and obsessive, "perseverating" expertise. If the show itself wasn't novel, channel hopping brought me to the edge of my seat. There, on The X-Files that night, was a man sweating and rocking, his face distorted as he spewed out numbers. More autism. It was becoming a familiar theme, I had to conclude, a television trope, comparable maybe to the bug-eyed, thin-lipped alien who has already abducted everything but the sports channels and the weather-woman.
In this paper it is argued that a social theory of disability can best be developed through the use of the concept of oppression. This concept is outlined, and special emphasis is placed on the importance of the social origins of impairment in such an analysis. The ways in which this approach would utilise data gathered from other theoretical perspectives is indicated. General features of a theory of disability as oppression are specified.
This paper will argue that research on disability has had little influence on policy and made no contribution to improving the lives of disabled people. In fact, up to now the process of research production has been alienating both for disabled people and for researchers themselves. Neither positivist nor interpretive paradigms are immune from the characterisation of research as alienation, and hence it is suggested that the only way to produce unalienated research is to change the social relations of research production. This change will require the development of an emancipatory research paradigm and both the development of and agenda for such a paradigm are briefly considered.
Self-determination has been identified with people with disabilities only since 1988. This article traces the history of the civil rights, disability rights, and self-advocacy movements. What began as a small federal initiative is presently a national effort in health care and other disability service systems and embraces ideas such as self-direction and consumer control. The road to self-determination has been different for three distinct populations: people with physical disabilities, people with cognitive disabilities, and people with Asperger syndrome and other autistic conditions. However, they all are striving to control their own lives and gain respect in their communities. Future self-determination efforts must further leadership skills and accentuate the positive values of having a disability.
Occupational science is an emerging basic science which supports the practice of occupational therapy. Its roots in the rich traditions of occupational therapy are explored and its current configuration is introduced. Specifications which the science needs to meet as it is further developed and refined are presented. Compatible disciplines and research approaches are identified. example's of basic science research questions and their potential contributions to occupational therapy practice are suggested.
The relationship between creativity and disability is complex and elusive. The ability for people with an autistic syndrome condition to bypass non-verbal clues and avoid the physical burden of sharing emotions via the virtual world of the Internet has brought about genuine empowerment and a deeper understanding of self-worth. However, both autistic people and those described and labeled as neurotypical (NT) need to overcome the temptation to devalue the body in the employment and exercise of virtual communication. In this context theology needs to articulate with greater vigor and conviction that people living with autism are not alone in their need to rediscover the essential goodness of the body.
This book examines a method of communication used by many people with autism, Down syndrome, pervasive developmental disorders, and other developmental disorders. The facilitated communication method has engendered extreme controversy, with some researchers claiming the method has allowed some individuals to demonstrate unexpected literacy and others suggesting it is a hoax, whereby users of the method are influenced to write the thoughts of their facilitators. In this volume, researchers address the controversy over authorship. In several cases, the authors explain why they selected particular frameworks and approaches, the changes they made along the way, the results they obtained, and other observations. Together and even individually, these studies challenge prevailing dogma about autism and other developmental disabilities, ultimately calling into question current conceptions of mental retardation. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
In the 1980s and 1990s our understanding of disability has matured and evolved. This . . . collection of essays by Michael Oliver discusses recent and perennial issues—such as the fundamental principles of disability, citizenship and community care, social policy and welfare, education, rehabilitation, the politics of new social movements and the international context. Interwoven as these issues are with the personal biography of the author, they reflect some of the major concerns which confront disabled people. The book thus represents both a personal journey of exploration and an attempt to take further our theoretical understanding of disability. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
A book on infantile autism, based on the experience of the staff at the Orthogenetic School. The author takes no explicit stand on the etiology of the disorder, but the treatment orientation, as shown in three case studies, is psychodynamic. Harvard Book List (edited) 1971 #540 (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Common sense allows that persons unable to handle a difficult problem can be labeled “disabled.” Social analysis shows that being labeled often invites a public response that multiplies the difficulties facing the seemingly unable. Cultural analysis shows that disability refers most precisely to inadequate performances only on tasks that are arbitrarily circumscribed from daily life. Disabilities are less the property of persons than they are moments in a cultural focus. Everyone in any culture is subject to being labeled and disabled.
Both primary care providers and subspecialists in pediatrics encounter families who are actively involved in the diagnosis and treatment of their children. Parents of children with an autism spectrum disorder in particular are often aware of scientific issues, and their expertise and desire for a medical cure for autism sometimes put them at odds with the medical team. We investigated the role of parents and advocates in autism research and treatment over the last 50 years. Our review of scientific publications and archival sources documents how parents and advocacy groups have done the following: (1) organized research funding; (2) constructed clinical research networks; (3) suggested new avenues for research; (4) popularized empirically based therapies; and (5) anticipated paradigmatic shifts in the understanding of autism. We believe that this historical account will help pediatricians and researchers recognize that families can contribute to expert understanding of complex medical conditions such as autism and that the existence of partnerships with families of children with autism is a critical component of future research and treatment programs.
Thesis (Ph. D.)--University of Southern California, 2003. Includes bibliographical references (leaves 190-210).
Douglas Biklen has done extensive research into a method for facilitating communication for people with autism. His article is a rich qualitative study of a facilitative communication method developed by Rosemary Crossley and her colleagues at the Dignity through Education and Language Communication Centre in Melbourne, Australia. This method challenges both Biklen's assumptions and those widely held in the field about the ability of people with autism to communicate. He demonstrates how people who have been labeled severely autistic can selectively communicate with certain facilitators, and in certain circumstances. In so doing, they not only challenge our widely held assumptions about autism, but also illustrate the effectiveness of an "education-through-dialogue approach" in which teachers and students learn from each other and where school validates personal expression.
SYNOPSIS
The clinical features, course, aetiology, epidemiology, differential diagnosis and management of Asperger's syndrome are described. Classification is discussed and reasons are given for including the syndrome, together with early childhood autism, in a wider group of conditions which have, in common, impairment of development of social interaction, communication and imagination.
Important methodological questions are raised by the act of researching disablement. Disability research has attracted much methodological criticism from disabled people who argue that it has taken place within an oppressive theoretical paradigm and within an oppressive set of social relations. These issues are of heightened significance for non-disabled researchers and bear many similarities to those faced by researchers investigating barriers to the social inclusion of women, Black and 'Third World' peoples. Such challenges have led to the development of an 'emancipatory' research paradigm. Six principles of emancipatory research are identified and the authors own research projects are critically examined within this framework. A number of contradictions are identified and an attempt made to balance the twin requirements of political action and academic rigour.
This paper reviews the history of Asperger syndrome (AS) and high-functioning autism (HFA), current diagnostic concepts and criteria, some controversial diagnostic issues, epidemiology, background factors, outcome, and intervention guidelines.
During the past 15 years, occupational therapists in Canada, through the Canadian Association of Occupational Therapists, have worked to develop and implement guidelines for practice of a client-centred approach to occupational therapy. One of the difficulties with the current Guidelines for the Client-Centred Practice of Occupational Therapy is the lack of a definition and discussion of the concepts and issues fundamental to client-centred practice. In this paper, key concepts of client-centred practice: individual autonomy and choice, partnership, therapist and client responsibility, enablement, contextual congruence, accessibility and respect for diversity are discussed. Two practice examples are used to illustrate these ideas and raise issues about obstacles to the practice of client-centred occupational therapy. Research evidence about the effectiveness of client-centred concepts in enhancing client satisfaction, functional outcomes and adherence to health service programmes is reviewed.
Previous reviews of Facilitated Communication (FC) studies have clearly established that proponents' claims are largely unsubstantiated and that using FC as an intervention for communicatively impaired or noncommunicative individuals is not recommended. However, while FC is less prominent than in the recent past, investigations of the technique's efficacy continue. This review examines published FC studies since the previous major reviews by Jacobson, Mulick, and Schwartz (1995) and Simpson and Myles (1995a). Findings support the conclusions of previous reviews. Furthermore, this review critiques and discounts the claims of two studies purporting to offer empirical evidence of FC efficacy using control procedures.
Autism is a neurobiological disorder that is diagnosed through careful behavioral assessment in early childhood. In this paper, we review recent studies that have attempted to reveal the underlying causes of autism using a variety of techniques. Particular emphasis is placed on techniques that have been used by a number of different laboratories, including structural magnetic resonance imaging and postmortem studies of neuroanatomy. Neurobiological and neuropsychological data from individuals across a wide age range are examined from a neurodevelopmental perspective. We discuss how these recent advances have led us to develop a growth dysregulation hypothesis of autism. Finally, we discuss how this hypothesis may lead to new innovations in autism research.
Disability studies seeks to reframe rehabilitation’s understanding and responses to disability. Disability scholars point out that rehabilitation’s perspectives and practices are not objective, but instead reflect particular historical and ideological forces. By demonstrating how rehabilitation practitioners can unintentionally do things that are unhelpful or even harmful, disability scholars challenge the profession of occupational therapy to reconsider aspects of practice, education, and research.
In order to provide a context for a special issue devoted to disability studies, this paper examines disability studies’ major critiques of rehabilitation and considers their implications for occupational therapy. The paper identifies ways that occupational therapy can continue to respond reflectively to the themes of disability studies. It also identifies a number of questions raised by disability studies that will need to be addressed in practice, education, and research.
Assessment Issues in Children and Adolescents with Asperger Syndrome
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