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.
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing.
2.
BoumaR.SchweitzerR. (1990). The impact of chronic childhood illness on family stress: A comparison between autism and cystic fibrosis. Journal of Clinical Psychology, 46, 722–730. doi:10.1002/1097-4679(199011)46:6<722::AID-JCLP2270460605>3.0.CO;2-6
3.
BradleyR. H.CaldwellB. M.BrisbyJ.MageeM.WhitesideL.RockS. L. (1992). The HOME Inventory: A new scale for families of pre- and early adolescent children with disabilities. Research in Developmental Disabilities, 13, 313–333. doi:10.1016/0891-4222(92)90009-U
4.
The Centers for Disease Control and Prevention. (2014). Prevalence of autism spectrum disorders among children aged 8 years: Autism and developmental disabilities monitoring network, 11 sites, United States, 2010. Morbidity and Mortality Weekly Report Surveillance Summaries, 63(2), 1–22. Retrieved from http://www.cdc.gov/mmwr/
5.
CormanM. K. (2013). How mothers talk about placement of their child with autism outside the home. Qualitative Health Research, 23, 1320–1332. doi:10.1177/1049732313505225
6.
DonovanA. M. (1988). Family stress and ways of coping with adolescents who have handicaps: Maternal perceptions. American Journal of Mental Retardation, 92, 502–509.
7.
ErlandsonD. A.HarrisE.SkipperB. L.AllenD. S. (1993). Doing naturalistic inquiry. Newbury Park, CA: Sage.
8.
FairthorneJ.FisherC.BourkeJ.LeonardH. (2014). Experiences impacting the quality of life of mothers of children with autism and intellectual disability. Psychology Research, 4, 666–684. Retrieved from http://www.davidpublishing.com/journals_info.asp?jId=2047
9.
GillJ.LiamputtongP. (2011). Walk a mile in my shoes: Life as a mother of a child with Asperger syndrome. Qualitative Social Work, 12, 41–56. doi:10.1177/1473325011415565
10.
GordonS. (1991). Prisoners of men’s dreams: Striking out for a new feminine future. Boston: Little, Brown.
11.
HastingsR. P. (2003). Child behavior problems and partner mental health as correlates of stress in mothers and fathers of children with autism. Journal of Intellectual Disability Research, 47(Pt. 4–5), 231–237. doi:10.1046/j.1365-2788.2003.00485.x
12.
HayesS. A.WatsonS. I. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43, 629–642. doi:10.1007/s10803-012-1604-y
13.
HolroydJ.McArthurD. (1976). Mental retardation and stress on the parents: A contrast between Down’s syndrome and childhood autism. American Journal of Mental Deficiency, 80, 431–436.
14.
IngersollB.HambrickD. Z. (2011). The relationship between the broader autism phenotype, child severity, and stress and depression in parents of children with autism spectrum disorder. Research in Autism Spectrum Disorders, 5, 337–344. doi:10.1016/j.rasd.2010.04.017
15.
JoostenA. V.SafeA. P. (2014). Management strategies of mothers of school-aged children with autism: Implications for practice. Australian Occupational Therapy, 61, 249–258. doi:10.1111/1440-1630.12116
16.
JorgensenD. L. (1989). Participant observation: A methodology for human studies. Newbury Park, CA: Sage.
17.
KingG.ZwaigenbaumL.BatesA.BaxterD.RosenbaumP. (2012). Parent views of the positive contributions of elementary and high school-aged children with autism spectrum disorders and Down syndrome. Child: Care, Health, and Development, 38, 817–828. doi:10.1111/j.1365-2214.2011.01312.x
18.
KingG. A.ZwaigenbaumL.KingS.BaxterD.RosenbaumP.BatesA. (2006). A qualitative investigation of changes in the belief systems of families of children with autism or Down syndrome. Child: Care, Health and Development, 32, 353–369. doi:10.1111/j.1365-2214.2006.00571.x
19.
KuhaneckH. M.BurroughsT.WrightJ.LemanczykT.DarraghA. R. (2010). A qualitative study of coping in mothers of children with an autism spectrum disorder. Physical & Occupational Therapy in Pediatrics, 30, 340–350. doi:10.3109/01942638.2010.481662
20.
LuptonD. (2013). “It’s a terrible thing when your children are sick”: Motherhood and home healthcare work. Health Sociology Review, 22, 234–242. doi:10.5172/hesr.2013.22.3.234
21.
LutzH. R.PattersonB. J.KleinJ. K. (2012). Coping with autism: A journey toward adaptation. Journal of Pediatric Nursing, 27, 206–213. doi: 10.1016/j.pedn.2011.03.013
22.
MarkoulakisR.FletcherP.BrydenP. (2012). Seeing the glass half full: Benefits to the lived experiences of female primary caregivers of children with autism. Clinical Nurse Specialist, 26(1), 48–56. doi:10.1097/NUR.0b013e31823bfb0f
23.
McCrackenG. (1988). The long interview. Newbury Park, CA: Sage.
24.
MeirsschautM.RoeyersH.WarreynP. (2010). Parenting in families with a child with autism spectrum disorder and a typically developing child: Mother’s experiences and cognitions. Research in Autism Spectrum Disorders, 4, 661–669. doi:10.1016/j.rasd.2010.01.002
25.
MyersB. J.MackintoshV. H.Goin-KochelR. P. (2009). “My greatest joy and my greatest heart ache”: Parents’ own words on how having a child in the autism spectrum has affected their lives and their families’ lives. Research in Autism Spectrum Disorders, 3, 670–684. doi:10.1016/j.rasd.2009.01.004
26.
NealyC. E.O’HareL.PowersJ. D.SwickD. C. (2012). The impact of autism spectrum disorders on the family: A qualitative study of mothers’ perspectives. Journal of Family Social Work, 15, 187–201. doi:10.1080/10522158.2012.675624
27.
OlssonM. B.HwangC. P. (2001). Depression in mothers and fathers of children with intellectual disability. Journal of Intellectual Disability Research, 45, 535–543. doi:10.1046/j.1365-2788.2001.00372.x
RaoP. A.BeidelD. C. (2009). The impact of children with high-functioning autism on parental stress, sibling adjustment, and family functioning. Behavior Modification, 33, 437–451. doi:10.1177/0145445509336427
30.
Runswick-ColeK. (2014). “Us” and “them”: The limits and possibilities of a “politics of neurodiversity” in neoliberal times. Disability & Society, 29, 1117–1129. doi:10.1080/09687599.2014.910107
31.
RyanS.Runswick-ColeK. (2009). From advocate to activist: Mapping the experiences of mothers of children on the autism spectrum. Journal of Applied Research in Intellectual Disabilities, 22, 43–53. doi:10.1111/j.1468-3148.2008.00438.x
32.
SafeA.JoostenA.MolineuxM. (2012). The experiences of mothers of children with autism: Managing multiple roles. Journal of Intellectual & Developmental Disability, 37, 294–302. doi:10.3109/13668250.2012.736614
33.
SandersJ. L.MorganS. B. (1997). Family stress and adjustment as perceived by parents of children with autism or Down syndrome: Implications for intervention. Child & Family Behavior Therapy, 19(4), 15–32. doi:10.1300/J019v19n04_02
34.
ThackerayL. A.EatoughV. (2015). “Well the future, that is difficult”: A hermeneutic phenomenological analysis exploring the maternal experience of parenting a young adult with a developmental disability. Journal of Applied Research in Intellectual Disabilities, 28(4), 265–275. doi:10.1111/jar.12126
35.
TraustadottirR. (1991). Mothers who care: Gender, disability, and family life. Journal of Family Issues, 12, 211–228. doi:10.1177/019251391012002005
36.
WaernessK. (1996). The rationality of caregiving. In GordonS.BennerP.NoddingsN. (Eds.), Caregiving: Readings in knowledge, practice, ethics and politics (pp. 231–255). Philadelphia: University of Pennsylvania Press.
37.
WeissJ. A.CappadociaM. C.MacMullinJ. A.VieciliM.LunskyY. (2012). The impact of child problem behaviors of children with ASD on parent mental health: The mediating role of acceptance and empowerment. Autism, 16, 261–274. doi:10.1177/1362361311422708
38.
WeissM. J. (2002). Hardiness and social support as predictors of stress in mothers of typical children, children with autism, and children with mental retardation. Autism, 6, 115–130. doi:10.1177/1362361302006001009
39.
WoodgateR. L.AteahC.SeccoL. (2008). Living in a world of our own: The experience of parents who have a child with autism. Qualitative Health Research, 18, 1075–1083. doi:10.1177/1049732308320112
