title: "Live It to Understand It": The Experiences of Mothers of Children With Autism Spectrum Disorder.
abstract: Mothers of children with an autism spectrum disorder (ASD) variably experience challenges in their caregiving role. This ethnographic study examined the caregiving experiences of mothers of a young person with ASD (aged ≤25 years). Semistructured interviews were conducted with 85 mothers across three Canadian regions. A follow-up subsample of 10 mothers took part in participant observation sessions in the home and/or other environments within the community. Analysis yielded themes that depicted the following: redefining child and family aspirations, forging a shifted identity, and the need to "live it" to understand mothering a young person with ASD. Supports and services were perceived to be required but often insufficient to meet the needs. Findings identify a range of challenges, lessons learned, and a reconfigured sense of mothering. An emerging model of mothering a child with ASD is presented. Implications for practice, policy, and research are offered.
authors.affiliation: University of Calgary, Calgary, Alberta, Canada nicholas@ucalgary.ca.
authors.forename: David B
authors.initials: DB
authors.lastname: Nicholas
authors.affiliation: Glenrose Rehabilitation Hospital, Edmonton, Alberta, Canada.
authors.forename: Lonnie
authors.initials: L
authors.lastname: Zwaigenbaum
authors.affiliation: The Hospital for Sick Children, Toronto, Ontario, Canada.
authors.forename: Stanley
authors.initials: S
authors.lastname: Ing
authors.affiliation: McGill University, Montreal, Quebec, Canada.
authors.forename: Radha
authors.initials: R
authors.lastname: MacCulloch
authors.affiliation: The Hospital for Sick Children, Toronto, Ontario, Canada.
authors.forename: Wendy
authors.initials: W
authors.lastname: Roberts
authors.affiliation: Holland Bloorview Kids Rehabilitation Hospital, Toronto, Ontario, Canada.
authors.forename: Patricia
authors.initials: P
authors.lastname: McKeever
authors.affiliation: York University, Toronto, Ontario, Canada.
authors.forename: Carly A
authors.initials: CA
authors.lastname: McMorris
mesh_terms: D000293:Adolescent; D000328:Adult; D000367:Age Factors; D000884:Anthropology, Cultural; D000067877:Autism Spectrum Disorder / Q000523:psychology*; D017028:Caregivers / Q000523:psychology; D002648:Child; D002675:Child, Preschool; D005190:Family / Q000523:psychology; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009034:Mother-Child Relations / Q000523:psychology; D009035:Mothers / Q000523:psychology*; D012934:Social Isolation; D035501:Uncertainty; D055815:Young Adult
keywords: Autism spectrum disorder; Canada; caregivers, caregiving; disability, children; ethnography; mothers, mothering, family; qualitative