First-hand Accounts of Emotional Experiences in Autism: A qualitative analysis

Jones, Robert S. P.; Zahl, Andrew; Huws, Jaci C.

doi:10.1080/09687590120045950

Cited by 92 publications

(72 citation statements)

References 9 publications

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“…This is very similar to findings from other studies looking at adults with late diagnosed ASDs, where the mean age at diagnosis was 31 years (Geurts & Jansen, 2011) and 34.1 years (Lehnhardt, et al, 2012). Many respondents wished that they had received their diagnosis earlier in life and this is a sentiment echoed in other qualitative work looking at the experiences of people with high-functioning ASDs (Jones, Zahl, & Huws, 2001). Indeed, the vast majority of respondents in this survey (89.8%) attended mainstream school, where acknowledgement of their condition and additional support would probably have been advantageous.…”

Section: Discussionsupporting

confidence: 83%

Experiences of Receiving a Diagnosis of Autism Spectrum Disorder: A Survey of Adults in the United Kingdom

Jones

Goddard

Hill

et al. 2014

J Autism Dev Disord

161

169

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This is the unspecified version of the paper.This version of the publication may differ from the final published version. A total of 128 adults with high-functioning autism spectrum disorders (ASD) were surveyed concerning the process they went through to obtain their diagnosis and the subsequent support they received. Results suggested that routes to diagnosis were quite heterogeneous and overall levels of satisfaction with the diagnostic process were mixed; 40% of respondents were 'very/quite' dissatisfied, whilst 47% were 'very/quite' satisfied. The extent of delays, number of professionals seen, quality of information given at diagnosis and levels of post-diagnostic support predicted overall satisfaction with the diagnostic process. Important areas and suggestions for improvement were noted for all stages of the diagnostic pathway. Finally, respondents displayed above average levels of depressed mood and anxiety, with greater support being requested in this area. Permanent repository link

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Section: Discussionsupporting

confidence: 83%

Experiences of Receiving a Diagnosis of Autism Spectrum Disorder: A Survey of Adults in the United Kingdom

Jones

Goddard

Hill

et al. 2014

J Autism Dev Disord

161

169

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“…Not even its name has been agreed upon' (Singer 1999: 63). For other recent and insightful discussions of boundaries and self-definitions of autism, see Bagatell (2007), Baker (2006), Brownlow and O'Dell (2006), Clarke and van Amerom (2007), Gevers (2000), Jones, Zahl and Huws (2001) and Waltz (2005). 2 The study is funded by the Social Science and Humanities Research Council of Canada.…”

Section: Notesmentioning

confidence: 99%

“…While the primary sources informing this paper are conventionally published autobiographies, the analysis also benefits from the findings of recent social science research conducted online (including Clarke and van Amerom 2007;Jones, Zahl and Huws 2001). The ethical challenges surrounding such studies (discussed by Brownlow and O'Dell 2002) have thus far restricted my own work in new media.…”

Section: Introduction: Definitions Beyond Diagnosismentioning

confidence: 99%

Autistic culture online: virtual communication and cultural expression on the spectrum

Davidson

2008

Social & Cultural Geography

160

138

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Drawing on first-hand accounts of the Autism Spectrum (AS), this paper argues that that there are distinctive autistic styles of communication. It suggests that these differences can usefully be conceptualized in Wittgensteinian terms as 'language games', and further, that these are associated with an autistic culture emerging alongside their practice, particularly online. The Internet is shown to be an appropriate, accommodating medium for those on the spectrum, given characteristic preferences for communication at a socio-spatial distance. The Internet has potential implications for AS social exclusion/inclusion, and hopes expressed in AS writings are high; one author claims that '[t]he impact of the Internet on autistics may one day be compared to the spread of sign language among the deaf' (Singer 1999: 67). This paper investigates such claims, and the extent to which those with autism describe using the Internet to connect with similar Others, not just for social support, but to organize and advocate for recognition of autistic cultural difference.

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“…Há uma crescente atenção da pesquisa em ciências sociais a respeito dessas questões, sobretudo em se tratando de análises etnográficas (Wilson, Peterson, 2002;Miller, Slater, 2000), sendo a internet um cenário destacado da construção de sentido para o diagnóstico e para a experiência de ser autista ou de ser parente de um autista. A internet vem se tornando um espaço essencial para o desenvolvimento da personalidade de pessoas com autismo (Kenway 2009;Biever, 2007;Blume, 1997), e um número destacado de estudos empíricos tem sido feito sobre o autismo no ciberespaço (Clarke, van Amerom, 2008Davidson, 2008;Brownlow, O'Dell, 2006;Jones, Meldal, 2001;Jones, Zahl, Huws, 2001).…”

Section: Autismo E Internetunclassified

A construção do diagnóstico do autismo em uma rede social virtual brasileira

Ortega

Zorzanelli

Meierhoffer

et al. 2013

Interface (Botucatu)

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Este artigo apresenta alguns resultados de uma pesquisa realizada em uma rede social virtual brasileira, com o tema do autismo. Investigou-se a opinião pública sobre o autismo nessa rede, por meio de suas comunidades ligadas ao assunto. A opinião pública sobre determinada condição médica traz consequências diretas sobre a experiência do doente e sobre as pessoas implicadas em cuidar dos pacientes acometidos. Os resultados apontam algumas direções a respeito das representações dos usuários sobre as supostas causas da doença, os métodos de tratamento, as formas de ativismo e de busca de direitos dos portadores, e os usos paradoxais do conhecimento médico, ao qual se atribui a possibilidade de desvendar a doença, e, ao mesmo tempo, é alvo de resistência de pais e cuidadores, que priorizam o conhecimento proveniente de sua experiência cotidiana com os autistas.

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First-hand Accounts of Emotional Experiences in Autism: A qualitative analysis

Cited by 92 publications

References 9 publications

Experiences of Receiving a Diagnosis of Autism Spectrum Disorder: A Survey of Adults in the United Kingdom

Experiences of Receiving a Diagnosis of Autism Spectrum Disorder: A Survey of Adults in the United Kingdom

Autistic culture online: virtual communication and cultural expression on the spectrum

A construção do diagnóstico do autismo em uma rede social virtual brasileira

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