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"The dots just don't join up": understanding the support needs of families of children on the autism spectrum

Galpin, J; Barratt, P; Ashcroft, E; Greathead, S; Kenny, L; Pellicano, EA; (2018) "The dots just don't join up": understanding the support needs of families of children on the autism spectrum. Autism , 22 (5) pp. 571-584. 10.1177/1362361316687989. Green open access

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Abstract

Much research has documented the elevated levels of stress experienced by families of autistic children. Yet remarkably little research has examined the types of support that these families perceive to be beneficial to their lives. This study, co-produced by researchers and school-based professionals, sought to establish these families’ support needs from their own perspectives. In total, 139 parents of autistic children with additional intellectual disabilities and limited spoken communication, all attending an inner-city London school, participated in an initial survey examining parental wellbeing, self-efficacy and the extent to which they felt supported. Semi-structured interviews were conducted with a subgroup of parents (n = 17), some of whom reported in the survey that they felt unsupported, in order to gain their in-depth perspectives. The results from both the survey and the interviews suggested that existing support (particularly from formal support services) was not meeting parents’ needs, which ultimately made them feel isolated and alienated. Parents who were interviewed called for service provision that adopted a relational, family-centred approach – one that understands the specific needs of the whole family, builds a close working relationship with them and ensures that they are supported at times when the parents and families feel they need it most.

Type: Article
Title: "The dots just don't join up": understanding the support needs of families of children on the autism spectrum
Open access status: An open access version is available from UCL Discovery
DOI: 10.1177/1362361316687989
Publisher version: https://doi.org/10.1177/1362361316687989
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions.
Keywords: autism, parents, self-efficacy, wellbeing, support, services, education, participatory research
UCL classification: UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Education
UCL > Provost and Vice Provost Offices > School of Education > UCL Institute of Education
UCL > Provost and Vice Provost Offices > School of Education > UCL Institute of Education > IOE - Psychology and Human Development
URI: https://discovery.ucl.ac.uk/id/eprint/1541005
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