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

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).