Caregiving can be a lifelong responsibility for parents of individuals with autism spectrum disorder (ASD). This study examined coping strategies and barriers experienced by parents of adult children with ASD. The 51 parents who participated in this study were at least 50 years old and had an adult child (18+) with ASD. Semistructured, one-on-one interviews were conducted with parents to understand their experiences of having an adult child with ASD. Using a qualitative, phenomenological approach, thematic analysis revealed seven themes related to parents’ coping strategies or lack thereof. Themes discussed include faith/spirituality, physical activity/fitness, self-focused coping, work, acceptance, reliance on social support, and barriers to coping. Most parents discussed having at least one coping strategy, with some sharing multiple strategies.
AbbedutoL.SeltzerM. M.ShattuckP.KraussM. W.OrsmondG.MurphyM. M.FloydF. (2004). Psychological well-being and coping in mothers of youths with autism, down syndrome, or fragile X syndrome. American Journal on Mental Retardation, 109(3), 237–254. https://doi.org/10.1352/0895-8017(2004)109<237:PWACIM>2.0.CO;2
Band-WintersteinT.AvieliH. (2017). The experience of parenting a child with disability in old age. Journal of Nursing Scholarship, 49(4), 421–428. https://doi.org/10.1111/jnu.12305
4.
BeightonC.WillsJ. (2017). Are parents identifying positive aspects to parenting their child with an intellectual disability or are they just coping? A qualitative exploration. Journal of Intellectual Disabilities, 21(4), 325–345. https://doi.org/10.1177/1744629516656073
5.
BellD. A.BellD. S. (1990). Husserl. Cambridge University Press Archive.
6.
BlackledgeJ. T.HayesS. C. (2006). Using acceptance and commitment training in the support of parents of children diagnosed with autism. Child & Family Behavior Therapy, 28(1), 1–8. https://doi.org/10.1300/J019v28n01_01
7.
CachiaR. L.AndersonA.MooreD. W. (2016). Mindfulness, stress and well-being in parents of children with autism spectrum disorder: A systematic review. Journal of Child and Family Studies, 25(1), 1–14. https://doi.org/10.1007/s10826-015-0193-8
ChristensenD. L.BraunK. V. N.BaioJ.BilderD.CharlesJ.ConstantinoJ. N.. . . LeeL. C. (2018). Prevalence and characteristics of autism spectrum disorder among children aged 8 years—Autism and developmental disabilities monitoring network, 11 sites, United States, 2012. MMWR Surveillance Summaries, 65(13), 1–23. https://doi.org/10.15585/mmwr.ss6513a1
10.
CollinsD. L.BaumA.SingerJ. E. (1983). Coping with chronic stress at Three Mile Island: Psychological and biochemical evidence. Health Psychology, 2(2), 149–166. https://doi.org/10.1037/0278-6133.2.2.149
11.
CreswellJ. W.PothC. N. (2018). Qualitative inquiry & research design: Choosing among five approaches. Sage.
12.
CroenL. A.ZerboO.QianY.MassoloM. L.RichS.SidneyS.KripkeC. (2015). The health status of adults on the autism spectrum. Autism: The International Journal of Research and Practice, 19(7), 814–823. https://doi.org/10.1177/1362361315577517
13.
DillenburgerK.McKerrL. (2011). “How long are we able to go on?” Issues faced by older family caregivers of adults with disabilities. British Journal of Learning Disabilities, 39(1), 29–38.
14.
EstesA.MunsonJ.DawsonG.KoehlerE.ZhouX. H.AbbottR. (2009). Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism, 13(4), 375–387. https://doi.org/10.1177/1362361309105658
15.
GentlesS. J.NicholasD. B.JackS. M.McKibbonK. A.SzatmariP. (2019). Parent engagement in autism-related care: A qualitative grounded theory study. Health Psychology and Behavioral Medicine, 7(1), 1–18. https://doi.org/10.1080/21642850.2018.1556666
16.
GriffithG. M.HastingsR. P.NashS.HillC. (2010). Using matched groups to explore child behavior problems and maternal well-being in children with Down syndrome and autism. Journal of Autism and Developmental Disorders, 40(5), 610–619. https://doi.org/10.1007/s10803-009-0906-1
17.
GriffithG. M.TotsikaV.NashS.JonesR. S.HastingsR. P. (2012). “We are all there silently coping.” The hidden experiences of parents of adults with Asperger syndrome. Journal of Intellectual and Developmental Disability, 37(3), 237–247. https://doi.org/10.3109/13668250.2012.701729
18.
HartleyS. L.BarkerE. T.SeltzerM. M.FloydF.GreenbergJ.OrsmondG.BoltD. (2010). The relative risk and timing of divorce in families of children with an autism spectrum disorder. Journal of Family Psychology, 24(4), 449–457. https://doi.org/10.1037/a0019847
19.
HastingsR. P. (2003). Child behaviour problems and partner mental health as correlates of stress in mothers and fathers of children with autism. Journal of Intellectual Disability Research, 47(4–5), 231–237. https://doi.org/10.1046/j.1365-2788.2003.00485.x
20.
HastingsR. P.BeckA. (2004). Practitioner review: Stress intervention for parents of children with intellectual disabilities. Journal of Child Psychology and Psychiatry, 45(8), 1338–1349. https://doi.org/10.1111/j.1469-7610.2004.00357.x
21.
HutchisonL.FederM.AbarB.WinslerA. (2016). Relations between parenting stress, parenting style, and child executive functioning for children with ADHD or autism. Journal of Child and Family Studies, 25(12), 3644–3656. https://doi.org/10.1007/s10826-016-0518-2
22.
KiamiS. R.GoodgoldS. (2017). Support needs and coping strategies as predictors of stress level among mothers of children with autism spectrum disorder. Autism Research and Treatment. https://doi.org/10.1155/2017/8685950
23.
KimH. W.GreenbergJ. S.SeltzerM. M.KraussM. W. (2003). The role of coping in maintaining the psychological well-being of mothers of adults with intellectual disability and mental illness. Journal of Intellectual Disability Research, 47(4–5), 313–327. https://doi.org/10.1046/j.1365-2788.2003.00493.x
24.
LazarusR.FolkmanS. (1984). Stress, appraisal, and coping. Springer.
25.
LeeG. K.KrizovaK.ShiversC. M. (2019). Needs, strain, coping, and mental health among caregivers of individuals with autism spectrum disorder: A moderated mediation analysis. Autism, 23, 1936–1947. https://doi.org/10.1177/1362361319833678
26.
LunskyY.HastingsR. P.WeissJ. A.PaluckaA. M.HuttonS.WhiteK. (2017). Comparative effects of mindfulness and support and information group interventions for parents of adults with autism spectrum disorder and other developmental disabilities. Journal of Autism and Developmental Disorders, 47(6), 1769–1779. https://doi.org/10.1007/s10803-017-3099-z
27.
MaddoxB. B.TrubanovaA.WhiteS. W. (2017). Untended wounds: Non-suicidal self-injury in adults with autism spectrum disorder. Autism, 21(4), 412–422. https://doi.org/10.1177/1362361316644731
28.
MarsackC. N.PerryT. E. (2018). Aging in place in every community: Social exclusion experiences of parents of adult children with autism spectrum disorder. Research on Aging, 40(6), 535–557. https://doi.org/10.1177/0164027517717044
29.
Marsack-TopolewskiC. N.ChurchH. L. (2019). Impact of caregiver burden on quality of life for parents of adult children with autism spectrum disorder. American Journal on Intellectual and Developmental Disabilities, 124(2), 145–156. https://doi.org/10.1352/1944-7558-124.2.145
30.
MarshallV.LongB. C. (2010). Coping processes as revealed in the stories of mothers of children with autism. Qualitative Health Research, 20(1), 105–116. https://doi.org/10.1177/1049732309348367
31.
MonatA.LazarusR. (1985). Stress and coping: An anthology (2nd ed.). Columbia University Press.
PepperellT. A.PaynterJ.GilmoreL. (2018). Social support and coping strategies of parents raising a child with autism spectrum disorder. Early Child Development and Care, 188(10), 1392–1404. https://doi.org/10.1080/03004430.2016.1261338
34.
PiazzaV. E.FloydF. J.MailickM. R.GreenbergJ. S. (2014). Coping and psychological health of aging parents of adult children with developmental disabilities. American Journal on Intellectual and Developmental Disabilities, 119(2), 186–198. https://doi.org/10.1352/1944-7558-119.2.186
35.
PolkinghorneD. E. (1989). Phenomenological research methods. In ValleR. S.HallingS. (Eds.), Existential-phenomenological perspectives in psychology (pp. 41–60). Springer.
ReddyG.FewsterD. L.GurayahT. (2019). Parents’ voices: Experiences and coping as a parent of a child with autism spectrum disorder. South African Journal of Occupational Therapy, 49(1), 43–50. https://doi.org/10.17159/2310-3833/2019/vol49n1a7
38.
ShepherdD.LandonJ.TaylorS.GoedekeS. (2018). Coping and care-related stress in parents of a child with autism spectrum disorder. Anxiety, Stress, & Coping, 31(3), 277–290. https://doi.org/10.1080/10615806.2018.1442614
39.
SmithL. E.GreenbergJ. S.SeltzerM. M. (2012). Social support and well-being at mid-life among mothers of adolescents and adults with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42(9), 1818–1826. https://doi.org/10.1007/s10803-011-1420-9
Van Naarden BraunK.ChristensenD.DoernbergN.SchieveL.RiceC.WigginsL.. . . Yeargin-AllsoppM. (2015). Trends in the prevalence of autism spectrum disorder, cerebral palsy, hearing loss, intellectual disability, and vision impairment, metropolitan Atlanta, 1991–2010. PLOS ONE, 10(4): e0124120. https://doi.org/10.1371/journal.pone.0124120
42.
VasilopoulouE.NisbetJ. (2016). The quality of life of parents of children with autism spectrum disorder: A systematic review. Research in Autism Spectrum Disorders, 23, 36–49. https://doi.org/10.1016/j.rasd.2015.11.008
43.
VinerR. (1999). Putting stress in life: Hans Selye and the making of the stress theory. Social Studies of Science, 29(3), 391–410. https://doi.org/10.1177/030631299029003003
44.
WangM.BrownR. (2009). Family quality of life: A framework for policy and social service provisions to support families of children with disabilities. Journal of Family Social Work, 12(2), 144–167. https://doi.rg/10.1080/10522150902874842
45.
WongC. C.MakW. W.LiaoK. Y. H. (2016). Self-compassion: A potential buffer against affiliate stigma experienced by parents of children with autism spectrum disorders. Mindfulness, 7(6), 1385–1395. https://doi.org/10.1007/s12671-016-0580-2
46.
WrightS. D.BrooksD. E.D’AstousV.GrandinT. (2013). The challenge and promise of autism spectrum disorders in adulthood and aging: A systematic review of the literature (1990-2013). Autism Insights, 5, 21–73. https://doi.org/10.4137/AUI.S11072
