Publications

2025

Higgins A, Tewolde E, Page SD, et al. The occurrence of obstructive sleep apnea and its association with Alzheimer dementia in Medicaid-enrolled adults with Down syndrome, 2011-2019. American Journal of Medical Genetics. 2025. doi:10.1002/ajmg.a.64241

Rubenstein E, Santoro SL. The value of population-level data and looking toward the future. Paediatric and Perinatal Epidemiology. 2025;0:1-3. doi:10.1111/ppe.70038

Rapp, E. Down syndrome versus dementia. Alzheimer’s & Dementia. 2025;21(6):e70204. doi:10.1002/alz.70204

Tewolde S, Rosenberg SB, Estrada JAG, et al. Epidemiology of Alzheimer Disease and Related Dementia Among Medicare and Medicaid Enrolled Autistic Adults, 2011-2019. Autism Res. 2025;18(5):1077-1086. doi:10.1002/aur.70035

Flores-Aguilar L, Hamlett ED, Araya P, et al. Imagine, Discover, Inspire: Proceedings of the 4th International Conference of the Trisomy 21 Research Society. Neuromolecular Med. 2025;27(1):5. doi:10.1007/s12017-024-08824-y

Scott A, Gould R, Quidore L, et al.Stress, Anxiety and Coping in Adults With Down Syndrome: An Exploratory Co-Research Study. J Appl Res Intellect Disabil. 2025;38(1):e13311. doi:10.1111/jar.13311

Tewolde S, Scott A, Higgins A, et al. Doubly Marginalized: The Interplay of Racism and Disability in Outcomes for Minoritized People With Down Syndrome. Epidemiology. 2025;36(1):66-75. doi:10.1097/EDE.0000000000001789

2024

Rubenstein E, Tewolde S, Skotko BG, Michals A, Fortea J. Occurrence of mosaic Down syndrome and prevalence of co-occurring conditions in Medicaid enrolled adults, 2016-2019. Am J Med Genet C Semin Med Genet. 2024;196(4):e32097. doi:10.1002/ajmg.c.32097

Rubenstein E, Tewolde S, Michals A, et al. Alzheimer Dementia Among Individuals With Down Syndrome. JAMA Netw Open. 2024;7(9):e2435018. doi:10.1001/jamanetworkopen.2024.35018

Levine AA, Cole MB, Michals AL, Wang N, Rubenstein E. Inequities in medicaid home- and community-based services waiver enrollment among people with intellectual and/or developmental disabilities: A nationwide claims-based analysis. Disabil Health J. 2024:101676. doi:10.1016/j.dhjo.2024.101676

Rubenstein E, Toth M, Tewolde S. Autism Among Adults with Down Syndrome: Prevalence, Medicaid Usage, and Co-Occurring Conditions. J Autism Dev Disord. 2024. doi:10.1007/s10803-024-06484-2

Van Dyke J, Rosenberg SA, Crume T, et al. Child Age at Time of First Maternal Concern and Time to Services Among Children with Autism Spectrum Disorder. J Dev Behav Pediatr. 2024;45(4):e293-e301. doi:10.1097/DBP.0000000000001283

Rubenstein E, Tewolde S, Levine AA, et al. Medicare, Medicaid, and dual enrollment for adults with intellectual and developmental disabilities. Health Serv Res. 2024;59(3):e14287. doi:10.1111/1475-6773.14287

Furnier SM, Ellis Weismer S, Rubenstein E, et al. Using adaptive behavior scores to convey level of functioning in children with autism spectrum disorder: Evidence from the Study to Explore Early Development. Autism. 2024;28(5):1135-1149. doi:10.1177/13623613231193194

Furnier SM, Gangnon R, Daniels JL, et al. Racial and ethnic disparities in the co-occurrence of intellectual disability and autism: Impact of incorporating measures of adaptive functioning. Autism Res. 2024;17(3):650-667. doi:10.1002/aur.3107

De La Garza E, Scott A, Hillerstrom H, Hendrix J, Rubenstein E. Caregivers’ concerns and supports needed to care for adults with Down syndrome. Am J Med Genet C Semin Med Genet. 2024;196(1):e32041. doi:10.1002/ajmg.c.32041

2023

Rubenstein E, Tewolde S, Michals A, Fox M, Wang N. Prevalence of Autism Among Medicaid-Enrolled Adults. JAMA Psychiatry. 2023;80(12):1284-1287. doi:10.1001/jamapsychiatry.2023.3708

Rubenstein E, Michals A, Wang N, et al. Medicaid Enrollment and Service Use Among Adults With Down Syndrome. JAMA Health Forum. 2023;4(8):e232320. doi:10.1001/jamahealthforum.2023.2320

Rubenstein E, Kyprianou N, Kumar PS, et al. Healthcare and Behavior Changes for Adults With Down Syndrome 1-Year Into COVID-19. Am J Intellect Dev Disabil. 2023;128(4):273-281. doi:10.1352/1944-7558-128.4.273

Kirova AM, Jakab T, Bartsch G, et al. Developing and implementing a public health co-research program for Special Olympics athletes. Res Involv Engagem. 2023;9(1):44. doi:10.1186/s40900-023-00450-5

Bock E, Brochu P, Rubenstein E. Homelessness and Disability in Public-School Students. Pediatrics. 2023;151(4). doi:10.1542/peds.2022-059885

Kyprianou N, Hendrix J, Hillerstrom H, Grimm R, Kirova AM, Rubenstein E. Caregivers’ perception of adults with Down syndrome willingness to participate in research. J Intellect Disabil Res. 2023;67(4):352-361. doi:10.1111/jir.12999

2022

García MH, Petersen JM, Parker SE, Rubenstein E, Werler MM. Medication use during pregnancy among women with congenital physical disabilities. Birth Defects Res. 2022;114(14):785-796. doi:10.1002/bdr2.2048

Rubenstein E, Ehrenthal DB, Nobles J, et al. Fertility rates in women with intellectual and developmental disabilities in Wisconsin Medicaid. Disabil Health J. 2022;15(3):101321. doi:10.1016/j.dhjo.2022.101321

Rubenstein E, Bock E, Brochu P, Byrne T. Quantifying the intersection of disability and homelessness in Massachusetts public schools in 2018-2019. Child Care Health Dev. 2022;48(4):569-577. doi:10.1111/cch.12961

Ransohoff JI, Sujin Kumar P, Flynn D, Rubenstein E. Reproductive and pregnancy health care for women with intellectual and developmental disabilities: A scoping review. J Appl Res Intellect Disabil. 2022;35(3):655-674. doi:10.1111/jar.12977

Huezo García M, Parker SE, Petersen JM, Rubenstein E, Werler MM. Birth outcomes among women with congenital neuromuscular disabilities. Disabil Health J. 2022;15(2):101259. doi:10.1016/j.dhjo.2021.101259

Wiggins LD, Tian LH, Rubenstein E, et al. Features that best define the heterogeneity and homogeneity of autism in preschool-age children: A multisite case-control analysis replicated across two independent samples. Autism Res. 2022;15(3):539-550. doi:10.1002/aur.2663

Rubenstein E, Rice C, Hollingue C, Tsai PC, Stewart L, Daniele Fallin M. Remembering Dr Li-Ching Lee, a pioneer of global autism research. Autism. 2022;26(2):562-563. doi:10.1177/13623613211059641

2021

Rubenstein E, Ehrenthal DB, Mallinson DC, Bishop L, Kuo HH, Durkin MS. Birth outcomes affecting infants of mothers with intellectual and developmental disabilities. Paediatr Perinat Epidemiol. 2021;35(6):706-716. doi:10.1111/ppe.12765

Ellis Weismer S, Rubenstein E, Wiggins L, Durkin MS. A Preliminary Epidemiologic Study of Social (Pragmatic) Communication Disorder Relative to Autism Spectrum Disorder and Developmental Disability Without Social Communication Deficits. J Autism Dev Disord. 2021;51(8):2686-2696. doi:10.1007/s10803-020-04737-4

Rubenstein E. #Bias: The Opportunities and Challenges of Surveys That Recruit and Collect Data of Autistic Adults Online. Autism Adulthood. 2021;3(2):120-128. doi:10.1089/aut.2020.0031

Wiggins LD, Rubenstein E, Windham G, et al. Evaluation of sex differences in preschool children with and without autism spectrum disorder enrolled in the study to explore early development. Res Dev Disabil. 2021;112:103897. doi:10.1016/j.ridd.2021.103897

Rubenstein E, Kalkbrenner A, Volk H, McGuinn L. Benefits, Burden, and COVID-19: A Response to Dutheil et al. (2020). J Autism Dev Disord. 2021;51(5):1808-1809. doi:10.1007/s10803-020-04762-3

Bishop L, McLean KJ, Rubenstein E. Epilepsy in adulthood: Prevalence, incidence, and associated antiepileptic drug use in autistic adults in a state Medicaid system. Autism. 2021;25(3):831-839. doi:10.1177/1362361320942982

2020

Rubenstein E, Ehrenthal DB, Mallinson DC, Bishop L, Kuo HH, Durkin M. Pregnancy complications and maternal birth outcomes in women with intellectual and developmental disabilities in Wisconsin Medicaid. PLoS One. 2020;15(10):e0241298. doi:10.1371/journal.pone.0241298

Rubenstein E, DuBois L, Sadowsky M, et al. Evaluating the potential of Special Olympics fitness models as a health intervention for adults with intellectual disabilities. Disabil Health J. 2020;13(2):100850. doi:10.1016/j.dhjo.2019.100850

Rubenstein E, Hartley S, Bishop L. Epidemiology of Dementia and Alzheimer Disease in Individuals With Down Syndrome. JAMA Neurol. 2020;77(2):262-264. doi:10.1001/jamaneurol.2019.3666

2019

Rubenstein E, Croen L, Lee LC, et al. Community-based service use in preschool children with autism spectrum disorder and associations with insurance status. Res Autism Spectr Disord. 2019;66. doi:10.1016/j.rasd.2019.101410

Rubenstein E. Is the Autism Boom Headed for Medicaid? Patterns in the Enrollment of Autistic Adults in Wisconsin Medicaid, 2008-2018. Autism Res. 2019;12(10):1541-1550. doi:10.1002/aur.2173

Bishop-Fitzpatrick L. The Physical and Mental Health of Middle Aged and Older Adults on the Autism Spectrum and the Impact of Intellectual Disability. Res Autism Spectr Disord. 2019;63:34-41. doi:10.1016/j.rasd.2019.01.001

Wiggins LD, Rubenstein E, Daniels J, et al. A Phenotype of Childhood Autism Is Associated with Preexisting Maternal Anxiety and Depression. J Abnorm Child Psychol. 2019;47(4):731-740. doi:10.1007/s10802-018-0469-8

Levy SE, Pinto-Martin JA, Bradley CB, et al. Relationship of Weight Outcomes, Co-Occurring Conditions, and Severity of Autism Spectrum Disorder in the Study to Explore Early Development. J Pediatr. 2019;205:202-209. doi:10.1016/j.jpeds.2018.09.003

Rubenstein E, Wiggins LD, Schieve LA, et al. Associations between parental broader autism phenotype and child autism spectrum disorder phenotype in the Study to Explore Early Development. Autism. 2019;23(2):436-448. doi:10.1177/1362361317753563

Rubenstein E. A matter of time: The necessity of temporal language in research on health conditions that present with autism spectrum disorder. Autism Res. 2019;12(1):20-25. doi:10.1002/aur.2010

Rubenstein E, Young JC, Croen LA, et al. Brief Report: Maternal Opioid Prescription from Preconception Through Pregnancy and the Odds of Autism Spectrum Disorder and Autism Features in Children. J Autism Dev Disord. 2019;49(1):376-382. doi:10.1007/s10803-018-3721-8

2018

Rubenstein E, Schieve L, Wiggins L, et al. Trends in documented co-occurring conditions in children with autism spectrum disorder, 2002-2010. Res Dev Disabil. 2018;83:168-178. doi:10.1016/j.ridd.2018.08.015

Rubenstein E, Durkin MS, Harrington RA, Kirby RS, Schieve LA, Daniels J. Relationship Between Advanced Maternal Age and Timing of First Developmental Evaluation in Children with Autism. J Dev Behav Pediatr. 2018;39(8):601-609. doi:10.1097/DBP.0000000000000601

Rubenstein E. Broader autism phenotype in parents of children with autism: a systematic review of percentage estimates. J Child Fam Stud. 2018;27(6):1705-1720. doi:10.1007/s10826-018-1026-3

Rubenstein E, Daniels J, Schieve LA, et al. Trends in Special Education Eligibility Among Children With Autism Spectrum Disorder, 2002-2010. Public Health Rep. 2018;133(1):85-92. doi:10.1177/0033354917739582

Rubenstein E, Schieve L, Bradley C, et al. The prevalence of gluten free diet use among preschool children with autism spectrum disorder. Autism Res. 2018;11(1):185-193. doi:10.1002/aur.1896

2017 and earlier

Rubenstein E, Edmondson Pretzel R, Windham GC, et al. The Broader Autism Phenotype in Mothers is Associated with Increased Discordance Between Maternal-Reported and Clinician-Observed Instruments that Measure Child Autism Spectrum Disorder. J Autism Dev Disord. 2017;47(10):3253-3266. doi:10.1007/s10803-017-3248-4

Blake JM, Rubenstein E, Tsai PC, et al. Lessons learned while developing, adapting and implementing a pilot parent-mediated behavioural intervention for children with autism spectrum disorder in rural Bangladesh. Autism. 2017;21(5):611-621. doi:10.1177/1362361316683890

Rubenstein E, Wiggins LD, Lee LC. A Review of the Differences in Developmental, Psychiatric, and Medical Endophenotypes Between Males and Females with Autism Spectrum Disorder. J Dev Phys Disabil. 2015;27(1):119-139. doi:10.1007/s10882-014-9397-x

Rubenstein E, Shendell D, Eggert BC, Marcella SW. Personal protective equipment use among students with special health care needs reporting injuries in school-sponsored vocational, career, and technical education programs in New Jersey. Workplace Health Saf. 2014;62(1):12-8. doi:10.1177/216507991406200103