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 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 such as ASDs 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. Accordingly, I apply a lifespan developmental perspective to my work, utilizing longitudinal analytic techniques to explore linked trajectories of development within the family system. As an example, I have explored the impact of the family environment on changes in autism symptoms and behavior problems for adolescents and adults with ASD, highlighting the family environment as an important, positive context for development.
Another area of my research is the development and evaluation of a family psychoeducation intervention for adolescents with ASD and their parents called Transitioning Together. With support from UW-Madison's Institute for Clinical and Translational Research (ICTR; 1UL1RR025011), we developed the intervention curriculum based on (a) past findings from our research group and (b) findings from focus groups with parents and service providers. The resulting Transitioning Together program involves weekly education and support group sessions for parents which cover topics such as transition planning, problem solving, and legal issues. At the same place and time as the parent group sessions, adolescents also meet to participate in social skill group sessions which involve a variety of games and learning activities. We initially piloted tested the program with 11 initial families, with promising results. We are currently continuing this work with a recent grant from Autism Speaks. This research is done in collaboration with other Waisman Center Investigators including Drs. Marsha Mailick Seltzer, Jan Greenberg, and Christopher Coe.
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.
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. Autsim Research. In Press.
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.
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.
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.
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. (2014) Change in Autism Symptoms and Maladaptive Behaviors in Adolescence and Adulthood: The Role of Positive Family Processes. Journal of Autism and Developmental Disorders. In Press.
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 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.
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].
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].
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.
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.