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Marsha Mailick

Marsha Mailick

Ph.D., Brandeis University
Vaughan Bascom and Elizabeth M. Boggs Professor, School of Social Work
Vice Chancellor for Research & Graduate Education marsha.mailick@wisc.edu
socwork.wisc.edu/marsha-mailick



Family Caregiving Across the Life Course

The focus of my research is on the life course impacts of disability on the family. I am interested in how lifelong caregiving affects the well-being of parents and siblings of individuals with disabilities, including autism, fragile X syndrome, Down syndrome, and schizophrenia. In addition, I have studied how the family environment affects the development of individuals with disabilities.

My research has been funded by the National Institute on Aging since 1990. With this support, we have conducted three lines of research. First, we have conducted a 12-year study of aging families who had an adult son or daughter with developmental disabilities (including Down syndrome) who were living at home when the study began. These families face a unique dual challenge: adjusting to the challenges of their own aging while at the same time continuing to have caregiving responsibilities for their son or daughter with developmental disabilities. The research examined the pattern of age-related changes and transitions in these families, how the changes affected the son or daughter with the disability, and the antecedents and consequences of out-of-home placement of the adult child. We currently completed a 20-year follow-up study of the aging adults with Down syndrome, with support from the National Institute of Child Health and Human Development (in collaboration with Anna Esbensen of the Cincinnati Children's Hospital).

A second line of research involves the comparison of parents of adults with developmental disabilities (most recently, autism and fragile X syndrome) with parents of adults with schizophrenia, in collaboration with Jan Greenberg of the University of Wisconsin-Madison. These studies have elucidated the diagnosis-specific aspects of family caregiving by examining differences in the stress and coping process for parents whose children have either developmental disabilities or schizophrenia, and consequent differences in their well-being. Support for this line of research comes from grants from the National Institute on Aging, the National Institute of Child Health and Human Development, and the National Institute of Mental Health.

My third line of research traces the life course impacts of parenting a child with a disability through two population-based studies. One involves a unique cohort, the participants in the Wisconsin Longitudinal Study (WLS). In collaboration with Jan Greenberg and Frank Floyd of the University of Hawaii, this research analyzes data spanning nearly 50 years in the lives of parents who have a child with developmental disabilities or severe mental health problems. It is the only study to include pre-parenting measures as well as multiple follow-up points across the life course, extending into the early years of old age. The second involves the MIDUS Study (Midlife in the US), a nationally representative sample of adults, including parents of individuals with disabilities-also in collaboration with Jan Greenberg. This is the first study of parents of children with disabilities to include both psychosocial and biomarker data regarding the impact of nonnormative parenting across the lifespan. These studies are also funded by the National Institute on Aging.



Representative Publications
Baker, J.K., Smith, L.E., Greenberg, J.S., & Mailick, M.R (In Press). Parenting climate and internalizing symptoms in adults with autism spectrum disorders. Journal of Abnormal Psychology.

Song, J., Mailick, M. R., & Greenberg, J. 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.
View publication via DOI: DOI:10.1093/geront/gnw269

Song, J., Mailick, M. R., Greenberg, J. S., & Hong, J. (2018). The lifelong health effects of parenting a child with developmental or mental health problems. In C. D. Ryff & R. F. Krueger (Eds.), The Oxford handbook of integrative health science. New York: Oxford University Press.

Song, J., Mailick, M. R., & Greenberg, J. S. (2018). Health of parents of individuals with developmental disorders or mental health problems: Impacts of stigma. Social Science & Medicine, 217, 152-158.
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View publication via DOI: DOI:10.1016/j.socscimed.2018.09.044

Namkung, E. H., Greenberg, J. S., & Mailick, M. R. (2017). Well-being of sibling caregivers: Effects of kinship relationship and race. The Gerontologist, 57(4), 626-636.
View publication via DOI: DOI:10.1093/geront/gnw008

Bishop-Fitzpatrick, L., Smith DaWalt, L., Greenberg, J. S., & Mailick, M. R. (2017). Participation in recreational activities buffers the impact of perceived stress on quality of life in adults with autism spectrum disorder. Autism Research, 10(5), 973-982.
View publication via DOI: DOI:10.1002/aur.1753

Chan, W., Smith, L. E., Greenberg, J. S., Hong, J., & Mailick, M. R (2017). Executive functioning mediates the effect of behavioral problems on depression in mothers of children with developmental disabilities. American Journal on Intellectual and Developmental Disabilities, 122(1), 11-24.
View publication via DOI: DOI:10.1352/1944-7558-122.1.11

Lao, P.J., Handen, B.L., Betthauser, T.J., Mihaila, I., Hartley, S.L., Cohen, A.D., ... Mailick, M.R., Klunk, W.E., Johnson, S.C., & Christian, B.T. (2017). Longitudinal changes in amyloid positron emission tomography and volumetric magnetic resonance imaging in the nondemented Down syndrome population. Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring, 9, 1-9.
View publication via DOI: DOI:10.1016/j.dadm.2017.05.001

Adamsheck, H. C., Petty, E. M., Hong, J., Baker, M. W., Brilliant, M. H., & Mailick, M. R. (2017). Is low FMR1 CGG repeat length in males correlated with family history of BRCA-associated cancers? An exploratory analysis of medical records. Journal of Genetic Counseling, 26(6), 1401-1410.
View publication via DOI: DOI:10.1007/s10897-017-0116-5

Chan, W., Smith, L. E., Hong, J., Greenberg, J. S., Lounds Taylor, J., & Mailick, M. R. (2017). Factors associated with sustained community employment among adults with autism and co-occurring intellectual disability. Autism. Advance online publication.
View publication via DOI: DOI:10.1177/1362361317703760

Chan, W., Smith, L. E., Hong, J., Greenberg, J. S., & Mailick, M. R. (2017). Validating the social responsiveness scale for adults with autism. Autism Research, 10(10), 1663-1671.
View publication via DOI: DOI:10.1002/aur.1813

DaWalt, L. S., Usher, L. V., Greenberg, J. S., & Mailick, M. R. (2017). Friendships and social participation as markers of quality of life of adolescents and adults with fragile X syndrome and autism. Autism, Advance online publication.
View publication via DOI: DOI:10.1177/1362361317709202

Song, J., Mailick, M. R., Greenberg, J. S., Ryff, C. D., & Lachman, M. E. (2016). Cognitive aging in parents of children with disabilities. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 71(5), 821-830.
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View publication via DOI: DOI:10.1093/geronb/gbv015

Woodman, A. C., Smith, L. E., Greenberg, J. S., & Mailick, M. R. (2016). Contextual factors predict patterns of change in functioning over 10 years among adolescents and adults with autism spectrum disorders. Journal of Autism and Developmental Disorders, 46(1), 176-189.
View publication via DOI: DOI:10.1007/s10803-015-2561-z

Smith, L. E., Hong, J., Greenberg, J. S., & Mailick, M. R. (2016). Change in the behavioral phenotype of adolescents and adults with FXS: Role of the family environment. Journal of Autism and Developmental Disorders, 46(5), 1824-1833.
View publication via DOI: DOI:10.1007/s10803-016-2714-8

Hong, J., Bishop-Fitzpatrick, L., Smith, L. E., Greenberg, J. S., & Mailick, M. R. (2016). Factors associated with subjective quality of life of adults with autism spectrum disorder: Self-report versus maternal reports. Journal of Autism and Developmental Disorders, 46(4), 1368-78.
View publication via DOI: DOI:10.1007/s10803-015-2678-0

Bishop-Fitzpatrick, L., Hong, J., Smith, L. E., Makuch, R. A., Greenberg, J. S., & Mailick, M. R. (2016). Characterizing objective quality of life and normative outcomes in adults with autism spectrum disorder: An exploratory latent class analysis. Journal of Autism and Developmental Disorders, 46(8), 2707-2719.
View publication via DOI: DOI:10.1007/s10803-016-2816-3

Lao, P. J., Betthauser, T. J., Hillmer, A. T., Price, J. C., Klunk, W. E., Mihaila, I., ... Mailick, M. R., ... Christian, B. T. (2016). The effects of normal aging on amyloid-beta deposition in nondemented adults with Down syndrome as imaged by carbon 11-labeled Pittsburgh compound B. Alzheimer's & Dementia 12(4), 380-390.
View publication via DOI: DOI:10.1016/j.jalz.2015.05.013

Woodman, A. C., Mailick, M. R., & Greenberg, J. S. (2016). Trajectories of internalizing and externalizing symptoms among adults with autism spectrum disorders. Development and Psychopathology, 28(2), 565-581.
View publication via DOI: DOI:10.1017/s095457941500108x

Woodman, A. C., Smith, L. E., Greenberg, J. S., & Mailick, M. R. (2015). Change in autism symptoms and maladaptive behaviors in adolescence and adulthood: The role of positive family processes. Journal of Autism and Developmental Disorders, 45(1), 111-126.
View publication via DOI: DOI:10.1007/s10803-014-2199-2

Namkung, E. H., Song, J., Greenberg, J. S., Mailick, M. R., & Floyd, F. J. (2015). The relative risk of divorce in parents of children with developmental disabilities: Impacts of lifelong parenting. American Journal on Intellectual and Developmental Disabilities, 120(6), 514-526.
View publication via DOI: DOI:10.1352/1944-7558-120.6.514

Song, J., Mailick, M. R., Ryff, C. D., Coe, C. L., Greenberg, J. S., & Hong, J. (2014). Allostatic load in parents of children with developmental disorders: Moderating influence of positive affect. Journal of Health Psychology, 19(2), 262-272.
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View publication via DOI: DOI:10.1177/1359105312468193

Wong, J. D., Mailick, M. R., Greenberg, J. S., Hong, J., & Coe, C. L. (2014). Daily work stress and awakening cortisol in mothers of individuals with autism spectrum disorders or Fragile X syndrome. Family Relations, 63(1), 135-147.
View publication via DOI: DOI:10.1111/fare.12055

Smith, L. E., Greenberg, J. S., & Mailick, M. R. (2014). The family context of autism spectrum disorders: Influence on the behavioral phenotype and quality of life. Child and Adolescent Psychiatric Clinics of North America, 23(1), 143-155.
View publication via DOI: DOI:10.1016/j.chc.2013.08.006

Song, J., Mailick, M.R., & Greenberg, J.S. (2014). Work and health of parents of adult children with serious mental illness. Family Relations, 63(1), 122-134.
View publication via DOI: DOI:10.1111/fare.12043

Wolfe, B., Song, J., Greenberg, J.S., & Mailick, M.R. (2014). Ripple effects of developmental disabilities and mental illness on nondisabled adult siblings. Social Science and Medicine, 108, 1-9.
View publication via DOI: DOI:10.1016/j.socscimed.2014.01.021

Hartley, S.L., Handen, B.L., Devenny, D.A., Hardison, R., Mihaila, I., Price, J.C., Cohen, A.D., Klunk, W.E., Mailick, M.R., Johnson, S.C., Christian, B.T. (2014). Cognitive functioning in relation to brain amyloid-? in healthy adults with Down syndrome. Brain, 137(Pt 9), 2556-63.
View publication via DOI: DOI:10.1093/brain/awu173

Mailick, M.R., Hong, J., Rathouz, P., Baker, M.W., Greenberg, J.S., Smith, L., & Maenner, M. (2014). Low-normal FMR1 CGG repeat length: phenotypic associations. Frontiers in Genetics, 5, 309.
View publication via DOI: DOI:10.3389/fgene.2014.00309

Fletcher, J., Mailick, M.R, Song, J., & Wolfe, B. (2013). A sibling death in the family: Common and consequential. Demography, 50(3), 803-826.
View publication via DOI: DOI:10.1007/s13524-012-0162-4

Floyd, F. J., Mailick, M., Greenberg, J. S., & Song, J. (2013). Parental bereavement during mid-to-later life: Pre- to postbereavement functioning and intrapersonal resources for coping. Psychology and Aging, 28(2), 402-413.
View publication via DOI: DOI:10.1037/a0029986

Sterling, A. M., Mailick, M., Greenberg, J., Warren, S. F., & Brady, N. (2013). Language dysfluencies in females with the FMR1 premutation. Brain and Cognition, 82(1), 84-89.
View publication via DOI: DOI:10.1016/j.bandc.2013.02.009

Maenner, M. J., Smith, L. E., Hong, J., Makuch, R., Greenberg, J. S., & Mailick, M. R. (2013). Evaluation of an activities of daily living scale for adolescents and adults with developmental disabilities. Disability and Health Journal. 6(1), 8-17.
View publication via DOI: DOI:10.1016/j.dhjo.2012.08.005

Barker, E.T., Greenberg, J.S., Mailick, M.R, & Almeida, D.M. (2012). Daily stress and cortisol patterns in parents of adult children with a serious mental illness. Health Psychology, 31(1), 130-134.
View publication via DOI: DOI:10.1037/a0025325

Greenberg, J.S., Mailick, M.R., Baker, J.K., Smith, L., Hong, J., Warren, S.F., & Brady, N. (2012). Family environment and behavior problems in children, adolescents, and adults with Fragile X Syndrome. American Journal on Intellectual and Developmental Disabilities, 117(4), 331-346.
View publication via DOI: DOI:10.1352/1944-7558-117.4.331

Smith, L., Mailick, M.R, & Greenberg, J. (2012). Daily health symptoms of mothers of adolescents and adults with fragile X syndrome and mothers of adolescents and adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 42(9), 1836-1846.
View publication via DOI: DOI:10.1007/s10803-011-1422-7

Wong, J. D., Mailick, M.R., Greenberg, J. S., Hong, J., Almeida, D. M., & Coe, C. L. (2012). Stressful life events and daily stressors affect awakening cortisol level in midlife mothers of individuals with autism spectrum disorders. Aging and Mental Health, 16(8), 939-949.
View publication via DOI: DOI:10.1080/13607863.2012.688191

Mailick, M.R, Baker, M.W., Hong, J., Maenner, M., Greenberg, J.S., & Mandel, D. (2012). Prevalence of CGG expansions of the FMR1 gene in a US population-based sample. American Journal of Medical Genetics Part B: Neuropsychiatric Genetics, 159B(5), 589-597.
View publication via DOI: DOI:10.1002/ajmg.b.32065

Smith, L.E., Maenner, M., & Mailick, M.R (2012). Developmental trajectories in adolescents and adults with autism: The case of daily living skills. Journal of the American Academy of Child and Adolescent Psychiatry, 51(6), 622-631.
View publication via DOI: DOI:10.1016/j.jaac.2012.03.001

Hartley, S.L., Barker, E.T., Baker, J.K., Mailick, M.R, & Greenberg, J.S. (2012). Marital satisfaction and life circumstances of grown children with autism across 7 years. Journal of Family Psychology, 26(5), 688-697.
View publication via DOI: DOI:10.1037/a0029354

Bishop, S.L., & Mailick, M.R (2012). Self-reported autism symptoms in adults with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42(11), 2354-2363.
View publication via DOI: DOI:10.1007/s10803-012-1483-2

Smith, L.E., Greenberg, J.S., & Mailick, M.R (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.
View publication via DOI: DOI:10.1007/s10803-011-1420-9

Mailick, M.R, Barker, E.T., Greenberg, J.S., Hong, J., Coe, C., & Almeida, D. (2012). Differential sensitivity to life stress in FMR1 premutation carrier mothers of children with fragile X syndrome. Health Psychology, 31(5), 612-622.
View publication via DOI: DOI:10.1037/a0026528

Smith, L.E., Barker, E.T., Mailick, M.R, Abbeduto, L., & Greenberg, J.S. (2012). Behavioral phenotype of fragile X syndrome in adolescence and adulthood. American Journal on Intellectual and Developmental Disabilities, 117(1), 1-17.
View publication via DOI: DOI:10.1352/1944-7558-117.1.1

Hartley, S., Mailick, M.R, Head, L., & Abbeduto, L. (2012). Psychological well-being in fathers of adolescents and young adults with Down syndrome, fragile X syndrome, and autism. Family Relations, 61(2), 327-342.
View publication via DOI: DOI:10.1111/j.1741-3729.2011.00693.x

Hartley, S., Mailick, M.R, Hong, J., Greenberg, J., Smith, L., Almeida, D., Coe, C., & Abbeduto, L. (2012). Cortisol response to behavior problems in FMR1 premutation mothers of adolescents and adults with fragile X syndrome: A diathesis-stress model. International Journal of Behavior and Development 36(1), 53-61.
View publication via DOI: DOI:10.1177/0165025411406857

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