Coping over time: the parents of children with autism

Gray, David E.

doi:10.1111/j.1365-2788.2006.00933.x

Cited by 230 publications

(226 citation statements)

References 16 publications

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“…Kitchin, 1998;Holt, 2003). For example, researchers exploring NT (public) spaces have focused upon parents' (mostly mothers') experiences of the reactions of others in public spaces towards their children with autism or learning disabilities (see Gray, 1993Gray, , 2002Gray, , 2006Ryan, 2005Ryan, , 2008Ryan, , 2006. There has been some work that has explored the Mapping the social geographies of autism -on-and off-line narratives of neuro-shared and separate spaces 9 experience of NT space for adults with autism.…”

Section: Neuro-separate and Neuroshared Spacesmentioning

confidence: 99%

Mapping the social geographies of autism – online and off-line narratives of neuro-shared and separate spaces

Rosqvist

Brownlow

O’Dell

2013

Disability & Society

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1Mapping the social geographies of autism -on-and off-line narratives of neuro-shared and separate spaces Points of Interest •We use the term 'space' to mean the places where people can talk with each other and meet. Spaces can either be accessible or not for people with autism.• On-line spaces are where people meet and talk through the internet. Research has shown that on-line spaces can be a helpful way for people with autism to communicate.• Off-lines spaces are where people meet face to face. Off-line spaces are often where people with autism have difficulty communicating. We argue that off-line spaces need to be transformed so that they are accessible for people with autism.• The research explores the meaning of off-and on-line spaces among people with autism.• In our research we found that people with autism want to meet in 'autism only' spaces and at times may want to meet in spaces with both autistic and non autistic people.Mapping the social geographies of autism -on-and off-line narratives of neuro-shared and separate spaces Mapping the social geographies of autism -on-and off-line narratives of neuro-shared and separate spaces 4 Abstract This paper draws together empirical work that has been produced by the authors in two different autistic spaces: The Swedish paper Empowerment produced by and aimed at adults with autism, and English-speaking autistic communities on-line. While the two points of data collection are quite different, there are important points of commonality which enable us to explore central issues concerning autistic and neurotypical space and the meanings assigned to these in different contexts. The paper aims to introduce the notion of social geographies of autism, based on talks among adults with autism and a social movement to promote autistic identities, giving examples from our previous work that has spanned both on-and off-line spaces. Key issues discussed in the paper include a focus on autistic political platforms and the carving out of both social and political spaces for people with autism. In doing so, neuroseparate and neuro-shared spaces must be negotiated.

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Section: Neuro-separate and Neuroshared Spacesmentioning

confidence: 99%

Mapping the social geographies of autism – online and off-line narratives of neuro-shared and separate spaces

Rosqvist

Brownlow

O’Dell

2013

Disability & Society

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“…특히, 아동이 어린 경우, 부모는 장애 진단을 최근에 받았거나 치료를 시작하는 시점에 있으므로 정서적 혼란 상태에서 스트레스와 우울 정도가 더 심하다 [6]. 그러 나 시간이 흐름에 따라 아동이 성장하면서 부모들은 점차적으로 정서적으로 안정되고 삶에 대한 태도도 긍정적으로 변화되는 양상 을 보이기도 한다 [7,8]. Figure 1).…”

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Construct Validity of the Life Transition Scale for Parents of Children with Autism

Lee

Hong

2014

J Korean Acad Nurs

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Purpose: The study was done to identify the construct validity and reliability of the life transition scale (LTS) for parents who have children with autism. Methods: Exploratory factor analysis (EFA) and confirmative factor analysis (CFA) were conducted to identify the most adequate measurement model for structural validity. Convergent validity and discriminant validity were also conducted for structural validity. Data were collected from 208 parents through self-reported questionnaires and analyzed with SPSS/WIN 15.0 and AMOS 20.0 version. Results: A four factor-structure was validated ( χ 2 = 541.23, p< .001, GFI= .82, RMSEA= .07, IFI= .89, CFI= .89, PNFI= .73, Q ( χ 2 /df)= 2.20) at the 3rd order of EFA and CFA, and factors were named as denying, wandering, despairing, and accepting. Both convergent and determinant validity for LTS were 100%. Cronbach's alphas for the reliability of each structure were .77-.90 and .83 for total structure. Conclusion: The four structures, 24-item instrument showed satisfactory reliability and validity. LTS has the potential to be appropriate for assessing the transition process of life for parents who have children with autism and provides basic directions for differentiated support and care at each stage.

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“…D'après des études effectuées en Occident, les parents d'enfant autiste partagent habituellement le diagnostic et les difficultés associées avec leur famille étendue (Hall et Graff, 2011 ;Presutto et al, 2011 ;Gray, 2006). Bien que la famille traditionnelle maghrébine offre un soutien important aux membres de la famille élargie (Favret, 2011), la majorité de nos sujets a préféré ne pas annoncer le diagnostic à leur famille, se privant de leur principal réseau de soutien.…”

Section: Discussionunclassified

Autisme et soutien social dans des familles d’immigration récente : l’expérience de parents originaires du Maghreb

Ben-Cheikh¹,

Rousseau²

2013

smq

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Cette étude qualitative exploratoire analyse l’impact d’un diagnostic d’autisme sur les réseaux de soutien social de parents originaires du Maghreb, nouvellement immigrants au Québec, et ayant un enfant diagnostiqué avec un trouble envahissant du développement. Des entrevues semi-structurées ont été réalisées avec dix parents et une observation participante a été effectuée lors de rencontres de soutien pour les mères. Nos résultats soulignent que le diagnostic d’autisme transforme le réseau familial et communautaire des parents, en créant des distances et des tensions mais aussi en générant de nouveaux liens, sources de soutien. Des rencontres de groupe entre mères originaires de la même communauté ayant un enfant autiste sont perçues par celles-ci comme étant particulièrement bénéfiques. L’analyse du rapport aux services professionnels montre que l’élaboration d’une alliance thérapeutique est souvent ardue à cause d’obstacles administratifs et de difficultés sur le plan de la communication interculturelle. Une meilleure compréhension, par les intervenants en santé et services sociaux, de l’interaction qui existe entre le contexte migratoire et la fragilisation des réseaux familiaux et sociaux associés à un diagnostic d’autisme chez un enfant de famille immigrante pourrait contribuer à diminuer la solitude et la souffrance de ces parents.This qualitative exploratory study examines the impact of an autism diagnosis on the social support networks of North African’s parents recently immigrated to Quebec and having a child diagnosed with pervasive developmental disorder. Semi-structured interviews were conducted with ten parents and participant observation took place during support meetings for the mothers. Our results highlight how the autism diagnosis transforms the parents’ family and community networks, creating tensions and losses while also generating new links, sources of support. Group meetings between mothers of the same community experiencing the same problem are perceived particularly beneficial. The analysis of the relationship between professional service providers and families underlines how the development of a therapeutic alliance is threatened by major problems caused by administrative obstacles and intercultural communication difficulties. A greater awareness by health and social professionals of the interaction between the migratory context and the social network challenges associated with autism diagnostic for immigrant families would help ease these parents’ loneliness and suffering

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Coping over time: the parents of children with autism

Cited by 230 publications

References 16 publications

Mapping the social geographies of autism – online and off-line narratives of neuro-shared and separate spaces

Mapping the social geographies of autism – online and off-line narratives of neuro-shared and separate spaces

Construct Validity of the Life Transition Scale for Parents of Children with Autism

Autisme et soutien social dans des familles d’immigration récente : l’expérience de parents originaires du Maghreb

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