Neurodiversity and self-advocacy

This presentation traces the history of neurodiversity and related concepts, including autistic self-advocacy

Autism and Communication: A Phenomenology of Parents’ Perspectives

Autism spectrum disorders (ASD) are characterized by language impairments and are often treated with a variety of communication interventions. In addition to these interventions, the parents of autistic children have to learn how to care for and communicate with their children on a daily basis, especially when their children do not speak. This study made use of phenomenological investigation techniques to explore (1) what parents understand about communication with their nonspeaking autistic children and (2) what particular strategies they find to be effective. Six mothers of autistic children were interviewed, and resulting themes were divided according to parents’ understandings and the formal and informal strategies they use. Implications for practice and future research are given

The Musicality of Stimming: Promoting Neurodiversity in the Ethnomusicology of Autism

In the symptomatology of autism spectrum disorders (ASDs), the practice of “odd, unusual, or repetitive behaviors” such as hand flapping and body rocking is referred to as stimming (Hammel and Hourigan 2013: 75). Stimming is routinely cast as problematic and targeted for reduction or elimination in therapeutic modalities for autistic individuals, including music therapy. In an alternate frame of reference grounded in the epistemological foundations of neurodiversity, however, stimming is subject to a very different kind of interpretation in which such behaviours are embraced as productive, communicative, pleasurable and even socially valuable for those who perform them—as manifestations of difference, not symptoms of deficit. This mode of interpretation forms the basis of the present article, which highlights the words and views of a 10-year-old girl on the autism spectrum who plays music and stims, and which more broadly draws upon theoretical and methodological premises of ethnomusicology to advance a neurodiverse perspective on autism.Résumé: Dans la symptomatologie des troubles du spectre autistique (TSA), les « comportements étranges, inhabituels ou répétitifs » tels que les battements de main ou le balancement du corps sont appelés gestes répétitifs ou stimming (Hammel et Hourigan 2013 : 75). Ces gestes répétitifs sont le plus souvent considérés comme problématiques et les modalités thérapeutiques, y compris la thérapie musicale, s’efforcent de les réduire ou de les éliminer chez les individus autistes. Mais dans un cadre de référence alternatif, issu des fondements épistémologiques de la neurodiversité, les gestes répétitifs font l’objet d’une interprétation totalement différente, à savoir que ces comportements sont considérés comme productifs, communicatifs, sources de plaisir, voire même comme ayant une valeur sociale pour ceux qui s’y livrent, en tant que manifestations de la différence et non comme symptômes d’un handicap. Ce mode d’interprétation constitue la base de cet article qui souligne, sur le spectre de l’autisme, les mots et les points de vue d’une petite fille de dix ans qui joue de la musique et fait des gestes répétitifs ; cet article, plus largement, se fonde sur les prémisses théoriques et méthodologiques de l’ethnomusicologie pour proposer un nouveau point de vue sur l’autisme, incluant la neurodiversité

Autism Paradigms and Mental Well-Being Among Autistic Adults: A Quantitative Exploration

Autistic populations experience significant mental health challenges. A growing body of research supports addressing autistic mental health problems using the framework of minority stress theory, the social model of disability, and the neurodiversity paradigm (e.g., Botha & Frost, 2018; Cage et al., 2018). This quantitative study explored how identification with the neurodiversity paradigm versus the pathology paradigm related to mental well-being in autistic adults. Participants (N = 135) completed an online survey in which they rated their identification with autism descriptions representing both paradigms. Participants also completed measures of psychological distress, self-esteem, personal autism acceptance, and internalized autism stigma. Most participants (81%) preferred the neurodiversity paradigm, while 6% preferred the pathology paradigm. Identification with the neurodiversity paradigm was correlated with higher autism acceptance and lower internalized stigma. Stronger identification with the pathology paradigm was correlated with higher internalized stigma and lower self-esteem. The results of this study suggest that autistic adults’ mental well-being might be improved by a multi-systemic shift to the neurodiversity paradigm. Clinical implications and future directions for research are discussed

“Pathological Demand-Avoidance” as a “Profile of ASD” & “Profound Autism”.

Since the broadening of autism into a spectrum in the late 1980s, there have been constant attempts to create subtypes of autistic persons. By the early 2010s, the use of autism subtypes had largely fallen out of widespread practice. However, recently there is growing attention around two new proposed subtypes of “Pathological Demand-Avoidance” (PDA), as a “Profile of ASD”, and “Profound Autism”. This talk compares the rationale for these two proposed autism subtypes, along with their respective definitions, and how the critique of one category is often applicable to the other. Additionally, how the two categories represent autistic self-advocacy, and predict what will happen when “PDA Profile of ASD” is appropriated by “Profound Autism” advocates. Finally, we critically evaluate PDA strategies. There is a need to prioritise the integrity of the autism category over utilising “PDA Profile of ASD” and/ or “Profound Autism”

A Rhetorical Journey into Advocacy

This thesis reveals how advocacy is rhetorically constructed by using several rhetorical tools such as Kenneth Burke’s terministic screens, Michel Foucault’s genealogy and archaeology, and Bruno Latour’s black box. It is told in an autistethnographic style where it is part narrative, part academic, and written by an autistic person. Advocacy is rhetorically constructed by beginning to define a label for yourself

Proud to be Autistic: Metaphorical Construction and Salience of Cultural and Personal Identity in #StopCombatingMe

Like many other autistic individuals, I struggle to find language to appropriately describe my experiences. Furthermore, within the Autistic community, debates over appropriate language use are frequent, including discussions on person-first language versus identity-first language, functioning language, and medical terminology. Through this research, I examine how rhetorical constructions of Autism gain power, focused on the role of language choice with regard to personal identity and self-advocacy and conduct a discourse analysis of the #StopCombatingMe movement on Twitter. Spearheaded by ASAN, a grassroots organization which seeks to challenge public dialogue on Autism, #StopCombatingMe sought to argue against the reauthorization of the Combating Autism Act. Namely, ASAN\u27s proponents claimed that the title of the act was offensive and that the act\u27s funding of research for a cause and cure of Autism was misguided. I collected data from tweets and blog posts associated with the campaign, with the purpose of exploring how Autistic individuals articulate their identities in response to hegemonic narratives of Autism. Through my research, I found three ideological themes: disability pride, self-determination, and the genetic origin of Autism. In the discourse, disability pride provided the reasoning behind the pervasive use of identity-first language, a refusal to use functioning language, and a rejection of the need to pass or conform to neurotypical expectations. Additionally, disability pride provided a foundation for a rejection or redirection of many of the metaphors frequently used to describe Autistic people, including AUTISM AS ILLNESS, AUTISM AS WAR, and AUTISTICS AS LOST. Within #StopCombatingMe, Autistic individuals made strong arguments for self-determination, self-advocacy, and Autistic agency, emphasizing the validity and importance of Autistic perspective within decision-making. Though research has yet to find a cause for Autism, within #StopCombatingMe, the overwhelming opinion was that Autism is genetic. My analysis led to intriguing conclusions about the salience of identity labels, reappropriation in a safe space, the applicability of functionality in determining human worth, and entailment relationships of Autism metaphors

Disabled Autonomy

Disability law is still undertheorized. In 2007, Ruth Colker wrote that disability law was undertheorized because it conflated “separate” with “unequal,” and because disability was largely ignored or poorly understood within theories of justice. The solution for Colker was to attach the anti-subordination perspective, which was developed to apply to race and sex, directly to disability. This Article argues that this transportation from the race and sex contexts was a partial solution, but is not sufficient to give full substance to disability law theory. Concepts from critical race theory and feminist jurisprudence have long been simply transported into the disability context, acting as an imperfect facsimile. The primary purpose of those concepts was to describe, analyze, and remedy problems primarily related to race and gender, not disability. While disability law has benefitted to some extent from inclusion in these legal theories, many of the unique features and complexities of disability law have been left on the table. This Article explores those complexities. Autonomy, usually thought of as an uncomplicated social good for other groups, is challenged in disability theory by two competing values. The value of anti-subordination is critical because it seeks to address, and redress, discrimination, sigma, and stereotyping. An anti-subordination perspective gives a voice and supplies resources to people with disabilities, and will counsel against choices that support stigma and stereotyping. An anti-subordination perspective might seek to limit a right to physician-assisted suicide, for example, because of concerns about exploitation and the messaging that disabled lives are not worth living. This runs counter to an autonomy-focused perspective, which would support the choice to end one’s life in the end stages of a terminal disease. An anti-eliminationism perspective advocates for the preservation of, and resources for, disabled lives. This comes to mean that not only are people with disabilities valued, but their disability is valued too. Instead of seeking to end Autism, for example, an anti-elimination perspective seeks to support Autistics. However, an anti-eliminationism perspective might also support the restriction of choice, and therefore come into conflict with autonomy, where there is a choice that results in the end of a disability. An anti-elimination perspective could seek to restrict the ability to selectively terminate pregnancies when a disability is found, for example. Anti-eliminationism inherently challenges the notion that getting rid of disability is a good thing. Parts I, II, and III of this Article describe the values of autonomy, anti-subordination, and anti-eliminationism in the disability context, and argue that these values are each critical components of disability law and theory. Part IV of this article provides an overview of some real-world examples where these values come into immediate conflict

Critical autism studies: exploring epistemic dialogues and intersections, challenging dominant understandings of autism

In this paper we explore how our cultural contexts give rise to different kinds of knowledges of autism and examine how they are articulated, gain currency, and form the basis for policy, practice and political movements. We outline key tensions for the development of critical autism studies as an international, critical abilities approach. Our aim is not to offer a cross-cultural account of autism or to assume a coherence or universality of ‘autism’ as a singular diagnostic category/reality. Rather, we map the ways in which what is experienced and understood as autism, plays out in different cultural contexts, drawing on the notion of ‘epistemic communities’ to explore shifts in knowledge about autism, including concepts such as ‘neurodiversity’, and how these travel through cultural spaces. The paper explores two key epistemic tensions; the dominance of ‘neuro culture’ and dominant constructions of personhood and what it means to be human