This study compared aging male and female parents of autistic adults to determine if self-reported caregiver health, quality of life, caregiver burden, informal social support, and formal social support differ between the two groups. Fifty-seven female caregivers and 57 male caregivers were selected using data from a larger study. T-tests for independent samples compared dependent variables between female and male parents. Statistically significant differences were found on four dependent variables, self-reported health, quality of life, overall caregiver burden, and emotional burden. Male parents had better self-reported health, greater quality of life, and less emotional burden, while female parents experienced greater overall caregiver burden. Social workers and other professionals should be cognizant of differences experienced by aging caregivers when providing tailored support and services.
AndersonC.ButtC. (2018). Young adults on the autism spectrum: The struggle for appropriate services. Journal of Autism and Developmental Disorders, 48, 3912–3925. https://doi.org/10.1007/s10803-018-3673-z
3.
BentenutoA.PerzolliS.de FalcoS.VenutiP. (2020). The emotional availability in mother-child and father-child interactions in families with children with Autism Spectrum Disorder. Research in Autism Spectrum Disorders, 75, 101569. https://doi.org/10.1016/j.rasd.2020.101569
4.
Bishop-FitzpatrickL.MazefskyC. A.EackS. M. (2018). The combined impact of social support and perceived stress on quality of life in adults with autism spectrum disorder and without intellectual disability. Autism, 22(6), 703–711. https://doi.org/10.1177/1362361317703090
5.
BogossianA.KingG.LachL. M.CurrieM.NicholasD.McNeillT.SainiM. (2019). (Unpacking) father involvement in the context of childhood neurodisability research: A scoping review. Disability and Rehabilitation, 41(1), 110–124. https://doi.org/10.1080/09638288.2017.1370497
6.
BomJ.BakxP.SchutF.Van DoorslaerE. (2019). The impact of informal caregiving for older adults on the health of various types of caregivers: A systematic review. The Gerontologist, 59(5), e629–e642. https://doi.org/10.1093/geront/gny137
7.
BraunsteinV. L.PenistonN.PerelmanA.CassanoM. C. (2013). The inclusion of fathers in investigations of autistic spectrum disorders. Research in Autism Spectrum Disorders, 7(7), 858–865. https://doi.org/10.1016/j.rasd.2013.03.005
8.
BurkeM. M.HellerT. (2017). Disparities in unmet service needs among adults with intellectual and other developmental disabilities. Journal of Applied Research in Intellectual Disabilities, 30(5), 898–910. https://doi.org/10.1111/jar.12282
9.
ByrneM. B.HurleyD. A.DalyL.CunninghamC. G. (2010). Health status of caregivers of children with cerebral palsy. Child: Care, Health and Development, 36(5), 696–702. https://doi.org/10.1111/j.1365-2214.2009.01047.x
10.
CabreraN. J.VollingB. L.BarrR. (2018). Fathers are parents, too! Widening the lens on parenting for children’s development. Child Development Perspectives, 12(3), 152–157. https://doi.org/10.1111/cdep.12275
11.
CasertaM. S.LundD. A.WrightS. D. (1996). Exploring the Caregiver Burden Inventory (CBI): Further evidence for a multidimensional view of burden. International Journal of Aging and Human Development, 43(1), 21–34. https://doi.org/10.2190/2DKF-292P-A53W-W0A8
ChafouleasS. M.IovinoE. A.KoriakinT. A. (2020). Caregivers of children with developmental disabilities: Exploring perceptions of health-promoting self-care. Journal of Developmental and Physical Disabilities, 32, 893–913. https://doi.org/10.1007/s10882-019-09724-x
14.
ChouK. R.ChuH.TsengC. L.LuR. B. (2003). The measurement of caregiver burden. Journal of Medical Sciences, 23(2), 73–82. https://doi.org/10.6136/JMS
15.
ChuaJ. Y. X.ShoreyS. (2021). The effect of mindfulness-based and acceptance commitment therapy-based interventions to improve the mental well-being among parents of children with developmental disabilities: A systematic review and meta-analysis. Journal of Autism and Developmental Disorders, 52, 2770–2783. https://doi.org/10.1007/s10803-021-04893-1
16.
CorcoranJ.BerryA.HillS. (2015). The lived experience of US parents of children with autism spectrum disorders: A systematic review and meta-synthesis. Journal of Intellectual Disabilities, 19(4), 356–366. https://doi.org/10.1177/1744629515577876
17.
DeekenJ. F.TaylorK. L.ManganP.YabroffK. R.InghamJ. M. (2003). Care for the caregivers: A review of self-report instruments developed to measure the burden, needs, and quality of life of informal caregivers. Journal of Pain and Symptom Management, 26(4), 922–953. https://doi.org/10.1016/S0885-3924(03)00327-0
18.
del-Pino-CasadoR.Frías-OsunaA.Palomino-MoralP. A.Ramón Martínez-RieraJ. (2012). Gender differences regarding informal caregivers of older people. Journal of Nursing Scholarship, 44(4), 349–357. https://doi.org/10.1111/j.1547-5069.2012.01477.x
19.
de LeeuwA.HappéF.HoekstraR. A. (2020). A conceptual framework for understanding the cultural and contextual factors on autism across the globe. Autism Research, 13(7), 1029–1050. https://doi.org/10.1002/aur.2276
20.
DerguyC.MichelG.M’bailaraK.RouxS.BouvardM. (2015). Assessing needs in parents of children with autism spectrum disorder: A crucial preliminary step to target relevant issues for support programs. Journal of Intellectual and Developmental Disability, 40(2), 156–166. https://doi.org/10.3109/13668250.2015.1023707
21.
DesmaraisK.BarkerE.GouinJ. P. (2018). Service access to reduce parenting stress in parents of children with autism spectrum disorders. Current Developmental Disorders Reports, 5(2), 116–123. https://doi.org/10.1007/s40474-018-0140-7
22.
DietzP. M.RoseC. E.McArthurD.MaennerM. (2020). National and state estimates of adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 50(12), 4258–4266. https://doi.org/10.1007/s10803-020-04494-4
23.
DrahotaA.SadlerR.HippensteelC.IngersollB.BishopL. (2020). Service deserts and service oases: Utilizing geographic information systems to evaluate service availability for individuals with autism spectrum disorder. Autism, 24(8), 2008–2020. https://doi.org/10.1177/1362361320931265
24.
DudleyK. M.KlingerM. R.MeyerA.PowellP.KlingerL. G. (2019). Understanding service usage and needs for adults with ASD: The importance of living situation. Journal of Autism and Developmental Disorders, 49, 556–568. https://doi.org/10.1007/s10803-018-3729-0
25.
FerencK.ByrkaK.KrólM. E. (2023). The spectrum of attitudes towards the spectrum of autism and its relationship to psychological distress in mothers of children with autism. Autism, 27(1), 54–64. https://doi.org/10.1177/1362361322108118
26.
FombonneE. (2020). Epidemiological controversies in autism. Swiss Archives of Neurology, Psychiatry and Psychotherapy, 171(1), 1–3. https://doi.org/10.4414/sanp.2020.03084
27.
GerhardtP. F.LainerI. (2011). Addressing the needs of adolescents and adults with autism: A crisis on the horizon. Journal of Contemporary Psychotherapy, 41, 37–45. https://doi.org/10.1007/s10879-010-9160-2
28.
GivenC. W.GivenB.StommelM.CollinsC.KingS.FranklinS. (1992). The Caregiver Reaction Assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Research in Nursing & Health, 15(4), 271–283. https://doi.org/10.1002/nur.4770150406
GraffJ. C.FisherM.HillL.ReavesR. P.Serge’RN.BetzC. L. (2022). Closing the nursing leadership gap: Leveraging partnerships with people with intellectual disabilities and developmental disabilities. Nursing Outlook, 70(6), 783–785. https://doi.org/10.1016/j.outlook.2022.07.009
31.
HellerT. (2019). Bridging aging and intellectual/developmental disabilities in research, policy, and practice. Journal of Policy and Practice in Intellectual Disabilities, 16(1), 53–57. https://doi.org/10.1111/jppi.12263
32.
HodgettsS.McConnellD.ZwaigenbaumL.NicholasD. (2017). The impact of autism services on mothers’ psychological wellbeing. Child: Care, Health and Development, 43(1), 18–30. https://doi.org/10.1111/cch.12398
33.
KraussM. W.SeltzerM. M.JacobsonH. T. (2005). Adults with autism living at home or in non-family settings: Positive and negative aspects of residential status. Journal of Intellectual Disability Research, 49(2), 111–124. https://doi.org/10.1111/j.1365-2788.2004.00599.x
LjungbergM.SchönU. K. (2023). Who cares? A scoping review about the experiences of parental caregivers of autistic adults. Journal of Applied Research in Intellectual Disabilities, 36, 929–939. https://doi.org/10.1111/jar.13126
MakombeC. B. T.ShabalalaN.ViljoenM.SerisN.de VriesP. J.FranzL. (2019). Sustainable implementation of early intervention for autism spectrum disorder through caregiver coaching: South African perspectives on barriers and facilitators. Pediatric Medicine, 2, 39. https://doi.org/10.21037/pm.2019.07.08
38.
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, 2378–2389. https://doi.org/10.1007/s10803-017-3157-6
39.
Marsack-TopolewskiC. N. (2022). Predictors of quality of life for aging family caregivers of adults with autism. Journal of Family Social Work, 25(2–3), 109–125. https://doi.org/10.1080/10522158.2023.2165584
40.
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
41.
Marsack-TopolewskiC. N.SamuelP. S.PetersonM. D. (2023). Perceptions of caregiver burden and living arrangements of adult children with autism. Families in Society. https://doi.org/10.1177/1044389423117040
42.
Marsack-TopolewskiC. N.WeiszA. N. (2020). Parents’ perceptions of access to services for their adult children diagnosed with autism spectrum disorder. Families in Society, 101(2), 190–204. https://doi.org/10.1177/1044389419881273
MitchellP. H.PowellL.BlumenthalJ.NortenJ.IronsonG.PitulaC. R.FroelicherE. S.CzajkowskiS.YoungbloodM.HuberM.BerkmanL. F. (2003). A short social support measure for patients recovering from myocardial infarction: The ENRICHD Social Support Inventory. Journal of Cardiopulmonary Rehabilitation, 23(6), 398–403.
45.
NevisonC.BlaxillM.ZahorodnyW. (2018). California autism prevalence trends from 1931 to 2014 and comparison to national ASD Data from IDEA and ADDM. Journal of Autism and Developmental Disorders, 48(12), 4103–4117. https://doi.org/10.1007/s10803-018-3670-2
46.
NicholasD. B.CalhounA.McLaughlinA. M.ShankarJ.KreitzerL.UzandeM. (2017). Care experiences of adults with a dual diagnosis and their family caregivers. Global Qualitative Nursing Research, 4, 2333393617721646. https://doi.org/10.1177/2333393617721646
47.
NovakM.GuestC. (1989). Application of a multidimensional caregiver burden inventory. The Gerontologist, 29(6), 798–803. https://doi.org/10.1093/geront/29.6.798
48.
Ortiz-RubioA.Torres-SánchezI.Cabrera-MartosI.Rodríguez-TorresJ.López-LópezL.Prados-RománE.ValenzaM. C. (2021). The Caregiver Burden Inventory as a sleep disturbance screening tool for parents of children with autism spectrum disorder. Journal of Pediatric Nursing, 61, 166–172. https://doi.org/10.1016/j.pedn.2021.05.013
49.
Oti-BoadiM.AsanteK. O.MalmE. K. (2020). The experiences of ageing parents of young adults with autism spectrum disorders (ASD). Journal of Adult Development, 27(1), 58–69. https://doi.org/10.1007/s10804-018-09325-6
50.
PaynterJ.DaviesM.BeamishW. (2018). Recognising the “forgotten man”: Fathers’ experiences in caring for a young child with autism spectrum disorder. Journal of Intellectual & Developmental Disability, 43(1), 112–124. https://doi.org/10.3109/13668250.2017.1293235
51.
PisulaE.BanasiakA. (2020). Empowerment in Polish fathers of children with autism and Down syndrome: The role of social support and coping with stress–a preliminary report. Journal of Intellectual Disability Research, 64(6), 434–441. https://doi.org/10.1111/jir.12681
52.
PottasA.PedroA. (2016). Experiences of father carers of children with autism spectrum disorder: An exploratory study. Journal of Psychology in Africa, 26(6), 551–554. https://doi.org/10.1080/14330237.2016.1250426
53.
RasoulpoorS.SalariN.ShianiA.Khaledi-PavehB.MohammadiM. (2023). Determining the relationship between over-care burden and coping styles, and resilience in mothers of children with autism spectrum disorder. Italian Journal of Pediatrics, 49(1), 53. https://doi.org/10.1186/s13052-023-01465-0
54.
RenfordN. G. R.ArulappanJ.ThomasK. D. E.KaruppiahK. M.ChinnathambiK.ThangaswamyG. C. (2020). Quality of life of caregivers of children with autism spectrum disorder in Tamil Nadu, South India. International Journal of Nutrition, Pharmacology, Neurological Diseases, 10(2), 57–64. https://doi:10.4103/ijnpnd.ijnpnd_16_
55.
RevensonT. A.GrivaK.LuszczynskaA.MorrisonV.PanagopoulouE.VilchinskyN.HagedoornM. (2016). Caregiving in the illness context. Palgrave Macmillan. https://doi.org/10.1057/9781137558985.0008
56.
Rodríguez-MadridM. N.del Río-LozanoM.Fernandez-PeñaR.Jiménez-PernettJ.García-MochónL.Lupiañez-CastilloA.García-CalventeM. D. M. (2019). Gender differences in social support received by informal caregivers: A personal network analysis approach. International Journal of Environmental Research and Public Health, 16(1), 91. https://doi.org/10.3390/ijerph16010091
RudelliN.StracciaC.PetitpierreG. (2021). Fathers of children with autism spectrum disorder: Their perceptions of paternal role a predictor of caregiving satisfaction, self-efficacy and burden. Research in Autism Spectrum Disorders, 83, 101744. https://doi.org/10.1016/j.rasd.2021.101744
SalvadorA.CrespoC.MartinsA. R.SantosS.CanavarroM. C. (2015). Parents’ perceptions about their child’s illness in pediatric cancer: Links with caregiving burden and quality of life. Journal of Child and Family Studies, 24(4), 1129–1140. https://doi.org/10.1007/s10826-014-9921-8
61.
SchiltzH. K.ClarkeE.RosenN.La RosaD.GomezS.MasjediN.ChristopherK.LordC. (2023). A longitudinal mixed-methods characterization of family support from adolescence to young adulthood in autism and other developmental disabilities. Journal of Autism and Developmental Disorders, 1–17. Advance online publication. https://doi.org/10.1007/s10803-023-06070-y
62.
SemiginaT.StoliarykO. (2022). “It was a shock to the whole family”: Challenges of Ukrainian families raising a child with autism. Socialinė teorija, empirija, politika ir praktika, 24, 8–23. https://www.zurnalai.vu.lt/STEPP/article/view/25050
63.
ShalevV.ChodickG.HeymannA. D.KokiaE. (2005). Gender differences in healthcare utilization and medical indicators among patients with diabetes. Public Health, 119(1), 45–49. https://doi.org/10.1016/j.puhe.2004.03.004
64.
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
65.
ShiversC. M.Sonnier-NettoL.LeeG. K. (2019). Needs and experiences of family caregivers of individuals with autism spectrum disorders across the lifespan. Journal of Policy and Practice in Intellectual Disabilities, 16(1), 21–29. https://doi.org/10.1111/jppi.12272
66.
SimonoffE.KentR.StringerD.LordC.BriskmanJ.LukitoS.PicklesA.CharmanT.BairdG. (2020). Trajectories in symptoms of autism and cognitive ability in autism from childhood to adult life: Findings from a longitudinal epidemiological cohort. Journal of the American Academy of Child & Adolescent Psychiatry, 59(12), 1342–1352. https://doi.org/10.1016/j.jaac.2019.11.020
67.
StahmerA. C.VejnoskaS.IadarolaS.StraitonD.SegoviaF. R.LuelmoP.MorganE. H.LeeH. S.JavedA.BronsteinB.HochheimerS.ChoE.AranbarriA.MandellD.McGeen HassrickE.SmithT.KasariC. (2019). Caregiver voices: Cross-cultural input on improving access to autism services. Journal of Racial and Ethnic Health Disparities, 6, 752–773. https://doi.org/10.1007/s40615-019-00575-y
68.
StillerA.StillerC. (2022). Parental report of quality of life in autistic children and youths: The role of parents’(informal) social support, and children’s active leisure time. International Journal of Developmental Disabilities, 1–11. Advance online publication. https://doi.org/10.1080/20473869.2022.2092935
69.
ThompsonA. E.AnisimowiczY.MiedemaB.HoggW.WodchisW. P.Aubrey-BasslerK. (2016). The influence of gender and other patient characteristics on health care-seeking behaviour: A QUALICOPC study. BMC Family Practice, 17(1), 1–7. https://doi.org/10.1186/s12875-016-0440-0
70.
TurcotteP.MathewM.SheaL. L.BrusilovskiyE.NonnemacherS. L. (2016). Service needs across the lifespan for individuals with autism. Journal of Autism and Developmental Disorders, 46, 2480–2489. https://doi.org/10.1007/s10803-016-2787-4
VaglioJ.Jr.ConardM.PostonW.O’KeefeJ.HaddockC.HouseJ.SpertusJ. (2004). Testing the performance of the ENRICHD Social Support Instrument in cardiac patients. Health and Quality of Life Outcomes, 2(1), 1–5. https://doi.org/10.1186/1477-7525-2-24
73.
Van Naarden BraunK.ChristensenD.DoernbergN.SchieveL.RiceC.WigginsL.SchendelD.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), Article e0124120. https://doi.org/10.1371/journal.pone.0124120
74.
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
75.
VernhetC.MichelonC.DellapiazzaF.RattazC.GeoffrayM. M.RoeyersH.PicotM.BaghdadliA. (2022). Perceptions of parents of the impact of autism spectrum disorder on their quality of life and correlates: Comparison between mothers and fathers. Quality of Life Research, 31, 1499–1508. https://doi.org/10.1007/s10803-005-0007-8
76.
WaldronD. A.SauerJ. A.AndersonM. M. (2022). Aging and autism spectrum disorder. In Stone-MacDonaldA.CihakD. F.ZagerD. (Eds.), Autism spectrum disorders: Advancing positive practices in education (pp. 507–540). Taylor & Francis.
77.
WangR.LiuQ.ZhangW. (2022). Coping, social support, and family quality of life for caregivers of individuals with autism: Meta-analytic structural equation modeling. Personality and Individual Differences, 186, 111351. https://doi.org/10.1016/j.paid.2021.111351
78.
WHOQOL Group. (1998). Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychological Medicine, 28(3), 551–558. https://doi.org/10.1017/S0033291798006667
79.
YamakiK.HsiehK.HellerT. (2009). Health profile of aging family caregivers supporting adults with intellectual and developmental disabilities at home. Intellectual and Developmental Disabilities, 47(6), 425–435. https://doi.org/10.1352/1934-9556-47.6.425
80.
YoongA.KoritsasS. (2012). The impact of caring for adults with intellectual disability on the quality of life of parents. Journal of Intellectual Disability Research, 56(6), 609–619. https://doi.org/10.1111/j.1365-2788.2011.01501.x
