Leann Smith DaWalt, PhD

Position title: Director, University Center for Excellence In Developmental Disabilities

PhD, University of Notre Dame
Director, University Center for Excellence In Developmental Disabilities
Senior Scientist, Waisman Center

Waisman Center
1500 Highland Ave
Room S101B
Madison, WI 53705
608-890-1390
lsmith@waisman.wisc.edu
Lifespan Family Research

Research Statement

As a lifespan developmental psychology, in my research I employ multilevel modeling and other longitudinal techniques to answer questions of behavioral continuity and change for individuals with intellectual and developmental disabilities (IDD) and their families across the life course, with a specific emphasis on adolescents and adults with IDD and the contextual factors associated with positive outcomes. My work also centers on translating the results of longitudinal research into timely and effective treatments and services for the populations that I study.

My research focuses on understanding the impact of having a child with a developmental disability on the family as well as the role of the family and community in supporting healthy development for individuals with disabilities such as autism spectrum disorders (ASDs) and fragile X syndrome (FXS). We know that parenting a child with a developmental disability can present many unique challenges for families. In one of our past studies, we have found that mothers of adolescents and adults with ASD were three times more likely to experience a stressful event on a given day than mothers of similarly-aged children without disabilities. Given the high level of stress experienced by many parents, I am interested in the interplay of stress, coping, and social support for parents of children with developmental disabilities and the subsequent impact that stress can have on parental health and well-being.

Developmental disabilities are lifelong conditions and families of children with developmental disabilities continue to be active contributors to their children’s lives not only during the childhood years, but also during adolescence and adulthood. We have found that the family factors such as warmth and positivity can impact changes in behavioral profiles over time for adolescents and adults with disabilities (i.e., ASD, FXS), highlighting the family environment as an important, positive context for development across the life course. Extending this work, my colleagues and I are currently conducting a NIH-funded study to examine family and community factors that promote stability in work and positive health and mental health for autistic adults.

My research also focuses on developing and evaluating interventional treatments for youth and young adults with developmental disabilities. Based on findings from our longitudinal research on adolescents and adults with ASD, I led the development and evaluation of a multi-family group psychoeducation treatment for adolescents with ASD and their families — Transitioning Together. Using a randomized clinical trial, we demonstrated improvements in parents’ mental health and problem-solving skills, and improvements in social skills for their adolescents with ASD. We have subsequently adapted this program for Spanish-speaking families and for implementation in high school settings. We also have evaluated a similar program for families of autistic young adults, with significant impacts on behavioral functioning and engagement in work and post-secondary education. Relatedly, using an implementation science framework, I led research as Co-PI evaluating a comprehensive treatment model in 60 US high schools for over 500 youth with ASD as part of the Center for Secondary Education for Students with ASD.

Selected Publications

Pubmed

Hickey, E. J., DaWalt, L. S., Hong, J., Taylor, J. L., & Mailick, M. R. (2024). Trajectories of Competitive Employment of Autistic Adults through Late Midlife. Healthcare (Basel, Switzerland), 12(2), 265. https://doi.org/10.3390/healthcare12020265
Hickey, E. J., DaWalt, L. S., Bolt, D., Hong, J., Song, J., Lounds Taylor, J., & Mailick, M. R. (2024). Impact of the Great Recession on adults with autism and their mothers. American journal on intellectual and developmental disabilities, 129(1), 26–40. https://doi.org/10.1352/1944-7558-129.1.26
Hong, J., Dembo, R. S., DaWalt, L. S., Baker, M. W., Berry-Kravis, E., & Mailick, M. R. (2023). Mortality in Women across the FMR1 CGG Repeat Range: The Neuroprotective Effect of Higher Education. Cells, 12(17), 2137. https://doi.org/10.3390/cells12172137
Taylor, J. L., DaWalt, L. S., Burke, M. M., Slaughter, J. C., & Xu, M. (2023). Improving parents’ ability to advocate for services for youth with autism: A randomized clinical trial. Autism research, 10.1002/aur.3001. Advance online publication. https://doi.org/10.1002/aur.3001
Dembo, R. S., Hong, J., DaWalt, L. S., Berry-Kravis, E. M., & Mailick, M. R. (2023). Health Effects of Sleep Quality in Premutation Carrier Mothers of Individuals With Fragile X Syndrome. American journal on Intellectual and Developmental Disabilities, 128(3), 254–268. https://doi.org/10.1352/1944-7558-128.3.254
Song, J., Dembo, R. S., Smith DaWalt, L., Ryff, C. D., & Mailick, M. R. (2023). Improving retention of diverse samples in longitudinal research on developmental disabilities. American Journal on Intellectual and Developmental Disabilities, 128(2), 164–175. https://doi.org/10.1352/1944-7558-128.2.164
Dembo, R. S., Mailick, M. R., Rudolph, A. E., Huntington, N., DaWalt, L. S., & Mitra, M. (2023). Social network diversity and mental health among mothers of individuals with autism. American Journal on Intellectual and Developmental Disabilities, 128(2), 101–118. https://doi.org/10.1352/1944-7558-128.2.101
Hughes, M. M., Shaw, K. A., Patrick, M. E., DiRienzo, M., Bakian, A. V., Bilder, D. A., Durkin, M. S., Hudson, A., Spivey, M. H., DaWalt, L. S., Salinas, A., Schwenk, Y. D., Lopez, M., Baroud, T. M., & Maenner, M. J. (2023). Adolescents With Autism Spectrum Disorder: Diagnostic Patterns, Co-occurring Conditions, and Transition Planning. The Journal of Adolescent Health, 73(2), 271–278. https://doi.org/10.1016/j.jadohealth.2022.12.010
Maltman, N., DaWalt, L. S., Hong, J., Baker, M. W., Berry-Kravis, E. M., Brilliant, M. H., & Mailick, M. (2023). FMR1 CGG repeats and stress influence self-reported cognitive functioning in mothers. American journal on intellectual and developmental disabilities, 128(1), 1–20. https://doi.org/10.1352/1944-7558-128.1.1
Hong, J., Dembo, R. S., DaWalt, L. S., Brilliant, M., Berry-Kravis, E. M., & Mailick, M. (2022). The effect of college degree attainment on neurodegenerative symptoms in genetically at-risk women. SSM – population health, 19, 101262. https://doi.org/10.1016/j.ssmph.2022.101262
DaWalt, L. S., Fielding-Gebhardt, H., Fleming, K. K., Warren, S. F., & Brady, N. (2022). Change in behavior problems from childhood through adolescence for children with fragile X syndrome. Journal of Autism and Developmental Disorders, 52(9), 4056–4066. https://doi.org/10.1007/s10803-021-05270-8
Maltman, N., Klusek, J., DaWalt, L., Hong, J., Sterling, A., Berry-Kravis, E., & Mailick, M. R. (2022). Verbal inhibition declines among older women with high FMR1 premutation expansions: A prospective study. Brain and cognition, 159, 105851. https://doi.org/10.1016/j.bandc.2022.105851
Taylor, J. L., Pezzimenti, F., Burke, M. M., DaWalt, L. S., Lee, C. E., & Rabideau, C. (2022). Development, Feasibility, and Acceptability of a Nationally Relevant Parent Training to Improve Service Access During the Transition to Adulthood for Youth with ASD. Journal of autism and developmental disorders, 52(6), 2388–2399. https://doi.org/10.1007/s10803-021-05128-z
Lorang, E., Hong, J., Song, J., DaWalt, L. S., & Mailick, M. (2022). Verbal Ability, Behavior Problems, and Mother-Child Relationship Quality in Autism Spectrum Disorder. Journal of autism and developmental disorders, 52(6), 2463–2478. https://doi.org/10.1007/s10803-021-05133-2
Lorang, E., Hong, J., DaWalt, L. S., & Mailick, M. (2022). Change in Maladaptive Behavior Affects Intergenerational Relationships in Fragile X Syndrome. American journal on intellectual and developmental disabilities, 127(3), 231–248. https://doi.org/10.1352/1944-7558-127.3.231
Smith, M. J., Sherwood, K., Blajeski, S., Ross, B., Smith, J. D., Jordan, N., Dawalt, L., Bishop, L., & Atkins, M. S. (2021). Job Interview and Vocational Outcomes Among Transition-Age Youth Receiving Special Education Pre-Employment Transition Services. Intellectual and developmental disabilities, 59(5), 405–421. https://doi.org/10.1352/1934-9556-59.5.405
Mailick, M. R., Hong, J., Movaghar, A., DaWalt, L., Berry-Kravis, E. M., Brilliant, M. H., Boero, J., Todd, P. K., & Hall, D. (2021). Mild Neurological Signs in FMR1 Premutation Women in an Unselected Community-Based Cohort. Movement disorders : official journal of the Movement Disorder Society, 36(10), 2378–2386. https://doi.org/10.1002/mds.28683
Smith DaWalt, L., Hickey, E., Hudock, R., Esler, A., & Mailick, M. (2021). Impact of Working Together for adults with autism spectrum disorder: a multifamily group intervention. Journal of neurodevelopmental disorders, 13(1), 44. https://doi.org/10.1186/s11689-021-09395-w
DaWalt, L. S., Taylor, J. L., Movaghar, A., Hong, J., Kim, B., Brilliant, M., & Mailick, M. R. (2021). Health profiles of adults with autism spectrum disorder: Differences between women and men. Autism research : official journal of the International Society for Autism Research, 14(9), 1896–1904. https://doi.org/10.1002/aur.2563
Smith, M. J., Sherwood, K., Ross, B., Smith, J. D., DaWalt, L., Bishop, L., Humm, L., Elkins, J., & Steacy, C. (2021). Virtual interview training for autistic transition age youth: A randomized controlled feasibility and effectiveness trial. Autism, 25(6), 1536–1552. https://doi.org/10.1177/1362361321989928
Hong, J., DaWalt, L., Baker, M. W., Berry-Kravis, E. M., & Mailick, M. R. (2021). Is FMR1 CGG Repeat Number Polymorphism Associated With Phenotypic Variation in the General Population? Report From a Cohort of 5,499 Adults. Frontiers in psychiatry, 12, 727085. https://doi.org/10.3389/fpsyt.2021.727085
Hong, J., Kapoor, A., DaWalt, L. S., Maltman, N., Kim, B., Berry-Kravis, E. M., Almeida, D., Coe, C., & Mailick, M. (2021). Stress and genetics influence hair cortisol in FMR1 premutation carrier mothers of children with fragile X syndrome. Psychoneuroendocrinology, 129, 105266. https://doi.org/10.1016/j.psyneuen.2021.105266
Movaghar, A., Page, D., Scholze, D., Hong, J., DaWalt, L. S., Kuusisto, F., Stewart, R., Brilliant, M., & Mailick, M. (2021). Artificial intelligence-assisted phenotype discovery of fragile X syndrome in a population-based sample. Genetics in medicine : official journal of the American College of Medical Genetics, 23(7), 1273–1280. https://doi.org/10.1038/s41436-021-01144-7
Maltman, N., DaWalt, L. S., Hong, J., & Mailick, M. (2021). Brief Report: Socioeconomic Factors Associated with Minimally Verbal Status in Individuals with ASD. Journal of autism and developmental disorders, 51(6), 2139–2145. https://doi.org/10.1007/s10803-020-04646-6
Tomaszewski, B., Kraemer, B., Steinbrenner, J. R., Smith DaWalt, L., Hall, L. J., Hume, K., & Odom, S. (2020). Student, Educator, and Parent Perspectives of Self-Determination in High School Students with Autism Spectrum Disorder. Autism research : official journal of the International Society for Autism Research, 13(12), 2164–2176. https://doi.org/10.1002/aur.2337
Usher, L. V., DaWalt, L. S., Hong, J., Greenberg, J. S., & Mailick, M. R. (2020). Trajectories of Change in the Behavioral and Health Phenotype of Adolescents and Adults with Fragile X Syndrome and Intellectual Disability: Longitudinal Trends Over a Decade. Journal of autism and developmental disorders, 50(8), 2779–2792. https://doi.org/10.1007/s10803-020-04367-w
Mailick MR, Hong J, DaWalt LS, Greenberg JS, Movaghar A, Baker MW, Rathouz PJ, Brilliant MH. (2020). FMR1 Low Zone CGG Repeats: Phenotypic Associations in the Context of Parenting Stress. Frontiers in Pediatrics, 8:223. doi: 10.3389/fped.2020.00223. PMID: 32478017; PMCID: PMC7240007.
Smith, M. J., Pinto, R. M., Dawalt, L., Smith, J. D., Sherwood, K., Miles, R., Taylor, J., Hume, K., Dawkins, T., Baker-Ericzén, M., Frazier, T., Humm, L., & Steacy, C. (2020). Using community-engaged methods to adapt virtual reality job-interview training for transition-age youth on the autism spectrum. Research in Autism Spectrum Disorders, 71, 101498. https://doi.org/10.1016/j.rasd.2019.101498
Friedman L, Sterling A, DaWalt LS, Mailick MR. (2019). Conversational Language Is a Predictor of Vocational Independence and Friendships in Adults with ASD. Journal of Autism and Developmental Disorders, 49(10):4294-4305. doi: 10.1007/s10803-019-04147-1.
Hartley SL, DaWalt LS, Hong J, Greenberg JS, Mailick MR. (2019). Positive Emotional Support in Premutation Carrier Mothers of Adolescents and Adults With Fragile X Syndrome: Gene by Environment Interactions. American Journal of Intellectual and Developmental Disabilities, 124(5):411-426. doi: 10.1352/1944-7558-124.5.411.
Usher, L. V., DaWalt, L. S., Greenberg, J. S., Mailick, M. R. (2019). Unaffected siblings of adolescents and adults with fragile X syndrome: Direct and buffering effects on maternal health. Journal of Family Psychology, 33(4):487-492. doi:10.1037/fam0000458.
Laxman DJ, Taylor JL, DaWalt L, Greenberg J, Mailick MR. (2019). Loss in services precedes high school exit for teens with ASD: A longitudinal study. Autism Research, 12(6):911-921. doi:10.1002/aur.2113.
Kuhn JL, Vanegas SB, Salgado R, Borjas SK, Magaña S, Smith DaWalt L. (2019). The cultural adaptation of a transition program for Latino families of youth with autism spectrum disorder. Family Process. In Press. doi: 10.1111/famp.12439
DaWalt LS, Usher L, Greenberg JS, Mailick MR. (2019) Friendships and social participation as markers of quality of life of adolescents and adults with fragile X syndrome and autism. Autism, 23(2):383-393. doi: 10.1177/1362361317709202.
Chan W, Smith LE, Hong J, Greenberg JS, Lounds Taylor J, Mailick MR. (2018) Factors Associated with Sustained Community Employment Among Adults with Autism and Co-occurring Intellectual Disability. Autism, 22(7):794-803. doi:10.1177/1362361317703760.
Bishop-Fitzpatrick L, Movaghar A, Greenberg JS, Page D, DaWalt LS, Brilliant MH, Mailick MR. (2018). Using machine learning to identify patterns of lifetime health problems in decedents with autism spectrum disorder. Autism Research, 11(8):1120-1128. doi: 10.1002/aur.1960.
Mailick MR, Movaghar A, Hong J, Greenberg JS, DaWalt LS, Zhou L, Jackson J, Rathouz PJ, Baker MW, Brilliant M, Page D, Berry-Kravis E. (2019). Health Profiles of Mosaic Versus Non-mosaic FMR1 Premutation Carrier Mothers of Children With Fragile X Syndrome. Frontiers in Genetics, 16;9:173. doi: 10.3389/fgene.2018.00173.
Laxman DJ, Greenberg JS, DaWalt LS, Hong J, Aman MG, Mailick M. (2018). Medication use by adolescents and adults with fragile X syndrome. Journal of Intellectual Disability Research, 62(2):94-105. doi: 10.1111/jir.12433.
DaWalt LS, Greenberg JS, Mailick MR. (2018). Transitioning Together: A multi-family group psychoeducation program for adolescents with ASD and their parents. Journal of Autism and Developmental Disorders, 48(1):251-263. doi: 10.1007/s10803-017-3307-x.
Taylor JL, DaWalt LS. (2017). Brief Report: Postsecondary Work and Educational Disruptions for Youth on the Autism Spectrum. Journal of Autism and Developmental Disorders, 47(12):4025-4031. doi: 10.1007/s10803-017-3305-z.
Chan W, Smith LE, Greenberg JS, Hong J, Mailick MR. (2017) Executive Functioning Mediates the Effect of Behavioral Problems on Depression in Mothers of Children With Developmental Disabilities. American Association on Intellectual and Developmental Disabilities. 122(1):11-24. doi: 10.1352/1944-7558-122.1.11.
Mailick M, Hong J, Greenberg J, Dawalt LS, Baker MW, Rathouz PJ. (2017) FMR1 Genotype Interacts with Parenting Stress to Shape Health and Functional Abilities in Older Age. American Journal of Medical Genetics Part B: Neuropsychiatric Genetics. 174(4):399-412. doi: 10.1002/ajmg.b.32529. PMCID:PMC5435525.
Chan W, Smith LE, Hong J, Greenberg JS, Mailick MR. (2017) Validating the social responsiveness scale for adults with autism. Autism Research, 10(10):1663-1671. doi: 10.1002/aur.1813.
Hartley SL, DaWalt LS, Schultz HM. (2017). Daily Couple Experiences and Parent Affect in Families of Children with Versus Without Autism. Journal of Intellectual Disability Research, 47(6):1645-1658. doi: 10.1007/s10803-017-3088-2.
Bishop-Fitzpatrick L, Smith DaWalt L, Greenberg JS, Mailick MR. (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. doi: 10.1002/aur.1753.
Nicholas DB, Hodgetts S, Zwaigenbaum L, Smith LE, Shattuck P, Parr JR, Conlon O, Germani T, Mitchell W, Sacrey L, Stothers ME. (2016) Research needs and priorities for transition and employment in autism: Considerations reflected in a “Special Interest Group” at the International Meeting for Autism Research. Autism Research, 10(1):15-24. doi: 10.1002/aur.1683.
Smith LE, Hong J, Greenberg JS, Mailick MR. (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):1824-33. doi: 10.1007/s10803-016-2714-8.
Bishop-Fitzpatrick L, Hong J, Smith LE, Makuch RA, Greenberg JS, Mailick MR. (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):2707-19. doi: 10.1007/s10803-016-2816-3.
Hong J, Bishop-Fitzpatrick L, Smith LE, Greenberg JS, Mailick MR. (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. doi: 10.1007/s10803-015-2678-0.
Woodman AC, Smith LE, Greenberg JS, Mailick MR. (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):176-89. doi: 10.1007/s10803-015-2561-z.
Odom SL, Thompson JL, Hedges S, Boyd BA, Dykstra JR, Duda MA, Szidon KL, Smith LE, Bord A. (2015) Technology-Aided Interventions and Instruction for Adolescents with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders. 45(12):3805-19. doi: 10.1007/s10803-014-2320-6.
Woodman AC, Smith LE, Greenberg JS, Mailick MR. (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):111-26. doi: 10.1007/s10803-014-2199-2.
Mailick MR, Hong J, Greenberg J, Smith L, Sherman S. (2014) Curvilinear association of CGG repeats and age at menopause in women with FMR1 premutation expansions. American Journal of Medical Genetics. Part B, Neuropsychiatric Genetics. 165B(8):705-11. doi: 10.1002/ajmg.b.32277.
Mailick MR, Hong J, Rathouz P, Baker MW, Greenberg JS, Smith L, Maenner M. (2014) Low-normal FMR1 CGG repeat length: phenotypic associations. Frontiers in Genetics. 5:309.
Maenner MJ, Smith LE, Hong J, Makuch R, Greenberg JS, Mailick MR. (2013) Evaluation of an activities of daily living scale for adolescents and adults with developmental disabilities. Disability and Health Journal. 6(1):8-17.
Smith, L.E., Maenner, M., Seltzer, M.M. (2012) Developmental trajectories in adolescents and adults with autism: The case of daily living skills. Journal of the American Academic of Child and Adolescent Psychiatry. 2159B(5):589-97. PMCID:PMC3391968.
Hartley SL, Seltzer MM, Hong J, Greenberg JS, 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 Behavioral Development. Jan;36(1):53-61.
Smith LE, Barker ET, Seltzer MM, Abbeduto L, Greenberg JS. (2012) Behavioral Phenotype of Fragile X Syndrome in Adolescence and Adulthood. American Journal on Intellectual and Developmental Disabilities. 117, No. 1, 1—17 .
Smith LE, Greenberg JS, Mailick MR. (2012) Adults with autism: outcomes, family effects, and the multi-family group psychoeducation model. Current Psychiatry Reports. 14(6):732-8.
Baker JK, Smith LE, Greenberg JS, Seltzer MM, Taylor JL. (2011) Change in maternal criticism and behavior problems in adolescents and adults with autism across a 7-year period. Journal of Abnormal Psychology. May;120(2):465-75.
Smith LE, Seltzer MM, Greenberg JS. (2011) 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. 2011 Dec 14. [Epub ahead of print].
Smith LE, Greenberg JS, Seltzer MM. (2011) Social Support and Well-being at Mid-Life Among Mothers of Adolescents and Adults with Autism Spectrum Disorders. Journal of Autism and Developmental Disorders. 2011 Dec 13. [Epub ahead of print].
Seltzer MM, Greenberg JS, Hong J, Smith LE, Almeida DM, Coe C, Stawski RS. (2010) Maternal cortisol levels and behavior problems in adolescents and adults with ASD. Journal of Autism and Developmental Disorders. Apr;40(4):457-69.