Tensions in Maternal Care for Children, Youth, and Adults With Autism Spectrum Disorder
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 mother...
| Main Authors: | , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
SAGE Publishing
2020-02-01
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| Series: | Global Qualitative Nursing Research |
| Online Access: | https://doi.org/10.1177/2333393620907588 |
| _version_ | 1818279699408748544 |
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| author | David B. Nicholas Radha MacCulloch Wendy Roberts Lonnie Zwaigenbaum Patricia McKeever |
| author_facet | David B. Nicholas Radha MacCulloch Wendy Roberts Lonnie Zwaigenbaum Patricia McKeever |
| author_sort | David B. Nicholas |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-12-12T23:37:29Z |
| format | Article |
| id | doaj.art-576add3f33534b8aa11e5f53a6d3373f |
| institution | Directory Open Access Journal |
| issn | 2333-3936 |
| language | English |
| last_indexed | 2024-12-12T23:37:29Z |
| publishDate | 2020-02-01 |
| publisher | SAGE Publishing |
| record_format | Article |
| series | Global Qualitative Nursing Research |
| spelling | doaj.art-576add3f33534b8aa11e5f53a6d3373f2022-12-22T00:07:23ZengSAGE PublishingGlobal Qualitative Nursing Research2333-39362020-02-01710.1177/2333393620907588Tensions in Maternal Care for Children, Youth, and Adults With Autism Spectrum DisorderDavid B. Nicholas0Radha MacCulloch1Wendy Roberts2Lonnie Zwaigenbaum3Patricia McKeever4University of Calgary, Edmonton, Alberta, CanadaHolland Bloorview Kids Rehabilitation Hospital, Toronto, Ontario, CanadaIntergrated Services for Autism and Neurodevelopmental Disorders, Toronto, Ontario, CanadaUniversity of Alberta, Edmonton, Alberta, CanadaUniversity of Toronto, Toronto, Ontario, CanadaThis 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.https://doi.org/10.1177/2333393620907588 |
| spellingShingle | David B. Nicholas Radha MacCulloch Wendy Roberts Lonnie Zwaigenbaum Patricia McKeever Tensions in Maternal Care for Children, Youth, and Adults With Autism Spectrum Disorder Global Qualitative Nursing Research |
| title | Tensions in Maternal Care for Children, Youth, and Adults With Autism Spectrum Disorder |
| title_full | Tensions in Maternal Care for Children, Youth, and Adults With Autism Spectrum Disorder |
| title_fullStr | Tensions in Maternal Care for Children, Youth, and Adults With Autism Spectrum Disorder |
| title_full_unstemmed | Tensions in Maternal Care for Children, Youth, and Adults With Autism Spectrum Disorder |
| title_short | Tensions in Maternal Care for Children, Youth, and Adults With Autism Spectrum Disorder |
| title_sort | tensions in maternal care for children youth and adults with autism spectrum disorder |
| url | https://doi.org/10.1177/2333393620907588 |
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