Living with children diagnosed with autistic spectrum disorder: parental and professional views

Karola Dillenburger, Mickey Keenan, Alvin Doherty, Tony Byrne, Stephen Gallagher

Research output: Chapter in Book/Report/Conference proceedingChapter

47 Citations (Scopus)

Abstract

The number of children diagnosed with an autistic spectrum disorder (ASD) is rising and is now thought to be as high as 1:100. While the debate about best treatment continues, the effects of having a child diagnosed with ASD on family life remain relatively unexplored. This article, by Karola Dillenburger of Queens University Belfast, Mickey Keenan of the University of Ulster, Alvin Doherty from the Health Service Executive Western Region, Tony Byrne of Parents’ Education as Autism Therapists (PEAT) and Stephen Gallagher of the University of Ulster, sets out to adjust that balance. Drawing upon data from a comprehensive study of parental needs, these authors argue that parental and professional views do not always concur; that families make extraordinary sacrifices; that siblings are affected; and that parents are under tremendous stress. Parents argue that educational and social service supports are not efficient and that they are forced to rely largely on support from within the family or from friends. In particular, some important differences between parental and professional perceptions became apparent in relation to interventions based on Applied Behaviour Analysis (ABA). The authors of this article propose that these differences need to be taken seriously by teachers and other professionals as well as by policy-makers. Transition services are presented. A mixed-methods approachwas used; detailed questionnaires supplied quantitative data and focus group discussions contributed qualitative data.
Original languageEnglish
Title of host publicationBritish Journal of Special Education
Pages13-23
Number of pages11
DOIs
Publication statusPublished - 2010

Publication series

NameBritish Journal of Special Education
Volume37

Keywords

  • Autism
  • Behaviour
  • Family life
  • Needs
  • Parents

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