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. 2020 Feb 19:7:2333393620907588.
doi: 10.1177/2333393620907588. eCollection 2020 Jan-Dec.

Tensions in Maternal Care for Children, Youth, and Adults With Autism Spectrum Disorder

David B Nicholas  1 , Radha MacCulloch  2 , Wendy Roberts  3 , Lonnie Zwaigenbaum  4 , Patricia McKeever  2   5
Affiliations

Tensions in Maternal Care for Children, Youth, and Adults With Autism Spectrum Disorder

David B Nicholas et al. Glob Qual Nurs Res. .

Abstract

This study explored the experiences of mothers caring for an individual with autism spectrum disorder (ASD) ranging from 5 to 25 years of age, and examined pervasive tensions in caregiving. Guided by ethnographic methods, a retrospective cross-sectional study was conducted. Interviews with 85 mothers were analyzed inductively. Prevalent tensions in maternal caregiving were identified: (a) difficulties obtaining, yet resistance to, an ASD diagnosis; (b) identified giftedness of the child versus notions of deficit imposed by others; (c) disability-related behaviors erroneously interpreted as 'poor parenting'; (d) contradictory considerations in diagnosis disclosure; (e) the invisibility yet pervasiveness of ASD; (f) extensive need for, yet the lack of, accessible services; (g) ASD-related care demands versus other pressing responsibilities; (h) arguments for inclusive versus exclusive services; and (i) aims of nurturing independence versus managing safety risk. Tensions were heightened by insufficient supports relative to need. Implications and recommendations for practice and policy are offered.

Keywords: autism; caregivers; lived experience; mothering; mothers.

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Conflict of interest statement

Declaration of Conflicting Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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