Impact of challenging behaviour on siblings of people with Autism

Date05 November 2018
Pages145-152
DOIhttps://doi.org/10.1108/AMHID-01-2018-0001
Published date05 November 2018
AuthorEvan Yacoub,Michael Dowd,Leigh McCann,Lydia Burke
Impact of challenging behaviour on
siblings of people with Autism
Evan Yacoub, Michael Dowd, Leigh McCann and Lydia Burke
Abstract
Purpose Despite being largely supportive of their sibling with an autism spectrum disorder (ASD), some
siblings without ASD also feel the effects of the disorder particularly in relation to challenging behaviour and
lack of empathy. The purpose of this paper is to explore the experiences adults who have a sibling with ASD
and intellectual disability (ID) with challenging behaviour.
Design/methodology/approach Interviews were conducted with 11 capacitous adult siblings of service
users who have ASD and ID as well as a history of challenging behaviour. A modified version of the autism
Parenting Stress Index was used to assess the impact on those siblings. thematic analysis was utilised to
analyse their responses.
Findings Four main themes emerged from the interviews, which highlighted that challenging behaviour can
cause emotional losses and can impact upbringing and the sibling relationship. Despite the siblings making
adjustments, they continue to have concerns for the future.
Originality/value Chronic challenging behaviour can impact on siblings, and it is important to support
entire families, and not exclusively parents.
Keywords Intellectual disability, Impact, Challenging behaviour, Autism, Family supports, Siblings
Paper type Research paper
Introduction
Emerson (1995) defines challenging behaviour as culturally abnormal behaviour(s) of such
intensity, frequency or duration that the physical safety of the person or others is placed in
serious jeopardy, or behaviour which is likely to seriously limit or deny access to the use of
ordinary community facilities.
Prevalence
Prevalence studies that have looked at a wide range of challenging be haviours have indicated
that such behaviours often coexist and that sizeable minority of people with intellectual
disabilities (I D) show severe and multiple forms of challenging beh aviour (British Psychologic al
Society, 2004).
Prevalence of challenging behaviour was examined in the total population of people with ID in the
UK (Emerson et al., 2001). The authors took their sample from a range of environments;
residential facilities, village communities, day services, adult placement services, nurseries,
special schools and peripatetic support teams. They found that challenging behaviours were
shown by 1015 per cent of people with ID. Similar prevalence levels were found by in Scotland
(Cooper et al., 2009) and in North America (Borthwick-Duffy, 1994).
Impact
Challenging behaviour can both impact on the quality of life of the person exhibiting the behaviour
and present difficulties for carers (Emerson, 1995). Doubet and Ostrosky (2015) report four key
areas of impact on families.
Received 8 January 2018
Revised 1 May 2018
Accepted 8 May 2018
Evan Yacoub is based at
Brothers of Charity Galway,
Galway, Ireland.
Michael Dowd and
Leigh McCann are both based
at Health Service Executive,
Dublin, Ireland.
Lydia Burke is Assistant
Psychologist at South Dublin
Intellectual Disability Team,
Dublin, Ireland.
DOI 10.1108/AMHID-01-2018-0001 VOL. 12 NO. 5/6 2018, pp.145-152, © Emerald Publishing Limited, ISSN 2044-1282
j
ADVANCESIN MENTAL HEALTH AND INTELLECTUAL DISABILITIES
j
PAGE145

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