Autism in the Twentieth Century: An Evolution of a Controversial Condition

O’Reilly, Michelle; Lester, Jessica Nina; Kiyimba, Nikki

doi:10.1007/978-3-030-27275-3_7

Cited by 11 publications

(6 citation statements)

References 57 publications

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“…Since several scientific communities are involved, the construct of ASD has been fraught with controversy [ 22 , 23 ]. ASD is a multiscale condition, and its scientific study requires different levels of analysis and generates various points of view, with each community providing its own perspective.…”

Section: Discussionmentioning

confidence: 99%

Popular and Scientific Discourse on Autism: Representational Cross-Cultural Analysis of Epistemic Communities to Inform Policy and Practice

Gauld¹,

Maquet²,

Micoulaud-Franchi³

et al. 2022

J Med Internet Res

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Background Social media provide a window onto the circulation of ideas in everyday folk psychiatry, revealing the themes and issues discussed both by the public and by various scientific communities. Objective This study explores the trends in health information about autism spectrum disorder within popular and scientific communities through the systematic semantic exploration of big data gathered from Twitter and PubMed. Methods First, we performed a natural language processing by text-mining analysis and with unsupervised (machine learning) topic modeling on a sample of the last 10,000 tweets in English posted with the term #autism (January 2021). We built a network of words to visualize the main dimensions representing these data. Second, we performed precisely the same analysis with all the articles using the term “autism” in PubMed without time restriction. Lastly, we compared the results of the 2 databases. Results We retrieved 121,556 terms related to autism in 10,000 tweets and 5.7x109 terms in 57,121 biomedical scientific articles. The 4 main dimensions extracted from Twitter were as follows: integration and social support, understanding and mental health, child welfare, and daily challenges and difficulties. The 4 main dimensions extracted from PubMed were as follows: diagnostic and skills, research challenges, clinical and therapeutical challenges, and neuropsychology and behavior. Conclusions This study provides the first systematic and rigorous comparison between 2 corpora of interests, in terms of lay representations and scientific research, regarding the significant increase in information available on autism spectrum disorder and of the difficulty to connect fragments of knowledge from the general population. The results suggest a clear distinction between the focus of topics used in the social media and that of scientific communities. This distinction highlights the importance of knowledge mobilization and exchange to better align research priorities with personal concerns and to address dimensions of well-being, adaptation, and resilience. Health care professionals and researchers can use these dimensions as a framework in their consultations to engage in discussions on issues that matter to beneficiaries and develop clinical approaches and research policies in line with these interests. Finally, our study can inform policy makers on the health and social needs and concerns of individuals with autism and their caregivers, especially to define health indicators based on important issues for beneficiaries.

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Section: Discussionmentioning

confidence: 99%

Popular and Scientific Discourse on Autism: Representational Cross-Cultural Analysis of Epistemic Communities to Inform Policy and Practice

Gauld¹,

Maquet²,

Micoulaud-Franchi³

et al. 2022

J Med Internet Res

View full text Add to dashboard Cite

show abstract

“…Since then, decades have been spent developing consistent criteria for medical diagnosis. At the same time, there was growing recognition of the variation in the presentation of autism across people, age and gender (O'Reilly, 2020, p. 143). Autism spectrum disorder is the medical name given to autism in the DSM (DSM 5, 2020).…”

Section: Literature Review and Rationalementioning

confidence: 99%

“…The counterargument to this is that without medicalisation, the suffering which people with autism experience will go unrecognised (Dyck & Russell, 2019, p. 170). Taking a social constructionist point of view, autism is a psychiatric category, a mental health condition, a disability and a natural human variation, depending on one's personal experience and viewpoint (O'Reilly, 2020, p. 144).…”

Section: Literature Review and Rationalementioning

confidence: 99%

How talking therapists experience working with adult clients who have autism

Brook

2022

Couns and Psychother Res

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This research aims to gain new insight by exploring the thoughts, feelings and experiences of therapists working with clients who have autism. Three professional talking therapists participated in the study. Unstructured interviews were conducted and analysed using interpretive phenomenological analysis. Six main themes and 13 sub‐themes were found which include therapists’ validation of autism, how therapists integrated autism when addressing mental health problems, how their personal experiences of autism impacted on their work and how they experienced the situation in which autism emerges during the therapy. Helpful suggestions are made for clinicians, namely, to zoom‐in and zoom‐out of autism, hold the knowledge that people with autism process information differently, incorporate working with trauma, consider disclosing a personal connection to autism and consider carefully whether, or not, to tell a client that they may have autism.

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“…The uncompromising dismissal of FC largely rests on the quantitative research conducted predominantly in the 1990s, when FC was in its infancy. Following the evolutionary trajectory of autism research ( O’Reilly et al, 2019 ), the 1990s FC research was undoubtedly colored by the prevailing deficits-based ideological framework surrounding autism at the time. Three decades later, with co-production and neurodiversity beginning to shape autism research questions, design and research priorities, it is time to reassess.…”

Section: Introductionmentioning

confidence: 99%

Perspective: Presuming Autistic Communication Competence and Reframing Facilitated Communication

2022

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Debate surrounding the validity of the method of supported typing known as facilitated communication (FC) has been continuous since its inception in the 1990s. Views are polarized on whether FC can be considered an authenticated method for use by people with complex communication needs (CCN) or significant challenges in speech, language, and communication. This perspective article presents an analysis of the research arguing for—and against—the use of FC, combined with the lived experience knowledge of autistic adults who utilize FC, to rehabilitate its current standing as discredited and unevidenced. By considering extant qualitative and quantitative studies, as well as personal accounts of the use of this particular Augmentative and Alternative Communication (AAC) method, the authors argue that the current dismissal of FC is rooted in ableist and outdated approaches. FC research should be reconsidered and reconducted using current best practice autism research approaches, including coproduction and a presumption of autistic communication competence, to assess its validity as a potential AAC method for autistic individuals.

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Autism in the Twentieth Century: An Evolution of a Controversial Condition

Cited by 11 publications

References 57 publications

Popular and Scientific Discourse on Autism: Representational Cross-Cultural Analysis of Epistemic Communities to Inform Policy and Practice

Popular and Scientific Discourse on Autism: Representational Cross-Cultural Analysis of Epistemic Communities to Inform Policy and Practice

How talking therapists experience working with adult clients who have autism

Perspective: Presuming Autistic Communication Competence and Reframing Facilitated Communication

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