Separating ‘emotion’ from ‘the science’: Exploring the perceived value of information for parents and families of children with autistic spectrum disorder

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Clinical Child Psychology and Psychiatry

Separating ‘emotion’ from ‘the science’: Exploring the perceived value of information for parents and families of children with autistic spectrum disorder

With the diagnosis of autistic spectrum disorders (ASDs) on the increase, it is the position of this report that information, and the management of it, is an essential part of managing an ASD within a family context. This analysis deploys the use of focus groups, with candidates either with a personal and/or professional interest in ASDs, to assess the central issues of information dialogue.

The central themes exhumed were the value of particular information sources (i.e. accessible to the non-professional), the potential vulnerabilities of families and the need for evidence. The report argues therefore that information must be managed carefully and with close reference to perceived familial vulnerabilities. The effect of practicalities, such as fatigue or time constraints are also accentuated.

Authors: Michelle O’Reilly, Khalid Karim and Jessica Nina Lester, Article first published online: 14 APR 2014

Publisher: Sage Journals. Article opened up to free access at request from SNJ via patientINFORM
Volume 20, Issue 3, pages 500-514, July 2015

Read the article abstract here.

Read the article PDF here.