Experience of families living with autism in rural coastal areas of England

Dataset

Description

Three semi-structured interview schedules (for parents, siblings and children/young people with autism) were developed focused on investigating:
• their experiences of living with ASD in a rural coastal area
• challenges experienced and barriers identified (if any) relating to autism
• availability and access of formal and informal support
• the perceived impact (if any) of living with ASD in a period of austerity.
Questions were open-ended and interviewers used appropriate prompts/probes.

Interviews were carried out with mothers, fathers, siblings (as appropriate within the individual family context) and, where possible, the child/young person(s) with autism in two rural coastal areas of England: Cornwall and North/West Norfolk. Access to families was obtained via local National Autistic Society groups: NAS Cornwall and NAS West Norfolk.

Twenty-two families from Cornwall (n=9, 24 individuals) and Norfolk (n=13, 25 individuals) were recruited to the study in autumn 2018. Thirty-five semi-structured interviews were carried out with 49 participants. The sample comprised:
• young people on the spectrum, aged 9-22 (n=11)
• their neurotypical siblings, aged 5-15 (n=5)
• mothers, aged 25 and up (n=21, 4 of whom are on the autism spectrum)
• fathers (n=10, 2 of whom are on the autism spectrum)
• grandparents (n=2).
Date made available2021
PublisherDataCite
Date of data production28 Jan 2019 - 27 Mar 2019
Geographical coverageCornwall and Norfolk, England.

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