This qualitative study explored the lived experiences of 13 caregivers providing long-term care for adult children with autism spectrum disorder (ASD) through an interpretative phenomenological analysis lens. The study aimed to understand caregivers’ interpretations of their roles and the enduring emotional, physical, and financial burdens. Two overarching themes—quality of life (QoL) and caregiver challenges—emerged, connected by the central theme of burnout. Eleven subthemes, including mental exhaustion, social isolation, lack of self-care, and future caregiving concerns, illustrated the depth of caregiver strain. Participants consistently reported emotional fatigue, insufficient support, and compromised personal well-being due to the demands of caregiving. The study underscores the pressing need for adult-focused services, including respite care, mental health support, and financial resources. Findings emphasize the importance of developing targeted interventions to alleviate caregiver burden and enhance QoL, contributing valuable insights to the literature on lifelong caregiving in the ASD community.
AltiereM. J.von KlugeS. (2009). Family functioning and coping behaviors in parents of children with autism. Journal of Child and Family Studies, 18(1), 83–92. https://doi.org/10.1007/s10826-008-9209-y
2.
AndersonK. A.ShattuckP. T.CooperB. P.RouxA. M.WagnerM. (2013). Prevalence and correlates of postsecondary residential status among young adults with an autism spectrum disorder. Autism, 18(5), 562–570. https://doi.org/10.1177/1362361313481860
3.
AndersonK. A.SosnowyC.KuoA. A.ShattuckP. T. (2018). Transition of individuals with autism to adulthood: A review of qualitative studies. Pediatrics, 141(Supplement 4), S318–S327. https://doi.org/10.1542/peds.2016-4300
4.
Centers for Disease Control and Prevention. (2020). Key findings: CDC releases first estimate of the number of adults living with autism spectrum disorder in the United States. National Center for Birth Defects and Developmental Disabilities. https://www. cdc.gov/ncbddd/autism/data.html.
5.
Centers for Disease Control and Prevention. (2024). Signs and symptoms of autism spectrum disorder. https://www.cdc.gov/autism/signs-symptoms/index.html.
6.
CraigF.MargariF.LegrottaglieA. R.PalumbiR.de GiambattistaC.MargariL. (2016). A review of executive function deficits in autism spectrum disorder and attention-deficit/hyperactivity disorder. Neuropsychiatric Disease and Treatment, 12, 1191–1202.
7.
DababnahS.ShaiaW. E.CampionK.NicholsH. M. (2018). “We had to keep pushing”: Caregivers’ perspectives on autism screening and referral practices of black children in primary care. Intellectual and Developmental Disabilities,56(5), 321–336.https://doi.org/10.1352/1934-9556-56.5.321
8.
DavisN. O.CarterA. S. (2008). Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: Associations with child characteristics. Journal of Autism and Developmental Disorders, 38(7), 1278–1291. https://doi.org/10.1007/s10803-007-0512-z
9.
DugganC.LinehanC. (2013). The role of ‘natural supports’ in promoting independent living for people with disabilities; a review of existing literature. British Journal of Learning Disabilities, 41(3), 199–207. https://doi.org/10.1111/bld.12040
10.
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
11.
HillJ. (2022). The Narrative Therapy Workbook: Deconstruct Your Story, Challenge Unhealth Beliefs, Reclaim Your Life. Rockridge Press.
JulesS. (2019). Life skills workbook for adults with autism and special needs: Activities to help develop independence, self-advocacy and self-care.
14.
KhanlouN.MustafaN.VazquezL. M.DavidsonD.YoshidaK. (2017). Mothering children with developmental disabilities: A critical perspective on health promotion. Health Care for Women International, 38(6), 613–634. https://doi.org/10.1080/07399332.2017.1296841
15.
LazarusR. S.FolkmanS. (1984). Stress, appraisal, and coping. Springer Publishing Company.
16.
LeeG. K.ShiversC. M. (2018). Factors that affect the physical and mental health of caregivers of school-age children and transitioning young adults with autism spectrum disorder. Journal of Applied Research in Intellectual Disabilities,32(3), 622–634. https://doi.org/10.1111/jar.12556
17.
MarsackC. N. (2016). An examination of quality of life of parents of adult children diagnosed with autism spectrum disorder (Doctoral dissertation, Wayne State University). DigitalCommons@WayneState. https://digitalcommons.wayne.edu/oa_dissertations/1461.
18.
MarsackC. N.HoppF. (2018). The moderating effect of health between informal social support and caregiver burden among parents of adult children with ASD. The Gerontologist, 59(6), 1112. https://doi.org/10.1093/geront/gny082
19.
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
20.
MarsackC. N.SamuelP. S. (2017). Mediating effects of social support on quality of life for parents of adults with autism. Journal of Autism and Developmental Disorders, 47(8), 2378–2389. https://doi.org/10.1080/10522158.2019.1578714
21.
Marsack-TopolewskiC. N. (2020). A snapshot of social support networks among parental caregivers of adults with autism. Journal of Autism and Developmental Disorders, 50(4), 1111–1122. https://doi.org/10.1007/s10803-019-04285-6
22.
Marsack-TopolewskiC. N. (2021). Relationship between caregiver burden and basic and instrumental activities of daily living among compound and noncompound caregivers. Journal of Family Social Work, 24(4), 299–319. https://doi.org/10.1080/10522158.2020.1861157
23.
Marsack-TopolewskiC. N.MaragakisA. (2021). Relationship between symptom severity and caregiver burden experienced by parents of adults with autism. Focus on Autism and Other Developmental Disabilities, 36(1), 57–65. https://doi.org/10.1177/1088357620956927
MutkinsE.BrownR. F.ThorsteinssonE. B. (2011). Stress, depression, workplace and social supports and burnout in intellectual disability support staff. Journal of Intellectual Disability Research, 55(5), 500–510. https://doi.org/10.1111/j.1365-2788.2011.01406.x
26.
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(3), 670–684. https://doi.org/10.1016/j.rasd.2009.01.004
27.
RattazC.MichelonC.RoeyersH.BaghdadliA. (2017). Quality of life in parents of young adults with ASD: EpiTED cohort. Journal of Autism and Developmental Disorders, 47(9), 2826–2837. https://doi.org/10.1007/s10803-017-3197-y
28.
RobinsonS.WeissJ. A.LunskyY.Ouellette-KuntzH. (2016). Informal support and burden among parents of adults with intellectual and/or developmental disabilities. Journal of Applied Research in Intellectual Disabilities, 29(4), 356–365. https://doi.org/10.1111/jar.12184
29.
RumboldJ. L.FletcherD.DanielsK. (2012). A systematic review of stress management interventions with sport performers. Sport, Exercise, and Performance Psychology, 1(3), 173–193. https://doi.org/10.1037/a0026628
30.
RutmanD.HubbersteyC. (2016). Is anybody there? Informal supports accessed and sought by youth from foster care. Children and Youth Services Review, 63, 21–27. https://doi.org/10.1016/j.childyouth.2016.02.007
31.
SchieveL. A.BlumbergS. J.RiceC.VisserS. N.BoyleC. (2007). The relationship between autism and parenting stress. Pediatrics, 119(Supplement 1), S114–S121. https://doi.org/10.1542/peds.2006-2089Q
SmithJ. A.FlowersP.LarkinM. (2022). Interpretative phenomenological analysis: Theory, method and research (2nd ed.). SAGE Publications Ltd.
34.
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
35.
SongJ.MailickM. R.GreenbergJ. S. (2018). The impact of the Great Recession on midlife and older parents of individuals with a mental health problem or a developmental disability. The Gerontologist, 58(3), 448–455. https://doi.org/10.1093/geront/gnw269
VassosM. V.NankervisK. L. (2012). Investigating the importance of various individual, interpersonal, organisational and demographic variables when predicting job burnout in disability support workers. Research in Developmental Disabilities, 33, 1780–1791.
38.
WhiteM. (2007). Maps of narrative practice. W. W. Norton and Company.
39.
WhiteM., & EpstonD. (1990). Narrative means to therapeutic ends. WW Norton & Company.
40.
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(8), 1075–1083. https://doi.org/10.1177/1049732308320112
41.
World Health Organization. (n.d.). Latin American and Caribbean Center on Health Sciences Information (BIREME) [MeSH descriptor page]. National Library of Medicine. Retrieved July 29, 2018, from https://id.nlm.nih.gov/mesh/D017028.
42.
ZablotskyB.BradshawC. P.StuartE. A. (2013). The association between mental health, stress, and coping supports in mothers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(6), 1380–1393. https://doi.org/10.1007/s10803-012-1693-7
