Research
Shaped by us or with us
Research shaped by us or with us. Our work brings the knowledge of adults with FASD into research that can improve understanding, health, services, and everyday life. Questions are stronger and priorities are better recognized when adults with FASD are involved.
Publications & Research Projects
- Himmelreich, M., Lutke, C.J., & Travis-Hargrove, E. (2020). The lay of the land: Fetal Alcohol Spectrum Disorder (FASD) as a whole-body diagnosis. In A.L. Begun & M.M. Murray (Eds.), The Routledge Handbook of Social Work and Addictive Behaviors. Routledge.
Lay of the Land Survey #1 – Health of ~500+ adults with diagnosed FASD.
View chapter - Hargrove, E., Lutke, C.J., Griffin, K., Himmelreich, M., Mitchell, J., Lutke, A., & Choate, P. (2024). FASD: The living experience of people with fetal alcohol spectrum disorder—Results of an anonymous survey. Disabilities, 4(2), 332–347.
Lay of the Land Survey #2 – Quality of life of ~450–468 adults with diagnosed FASD.
Open access article - Hargrove, E. (2026). How adults with FASD describe spiritual experiences and faith formation (Doctoral dissertation). Walden University.
View dissertation - Speybroeck, E.L., Petrenko, C., Tapparello, C., Griffin, K., Hargrove, E., Himmelreich, M., Lutke, A., Lutke, C.J., May, M., et al. (2024). My Health Coach: Community members’ perspectives on a mobile health tool for adults with fetal alcohol spectrum disorders. Digital Health, 10.
Co-developed with ALC members.
View article - Speybroeck, E.L., Petrenko, C., Tapparello, C., Romanos, C., Griffin, K., Hargrove, E., Himmelreich, M., Lutke, A., Lutke, C.J., May, M., et al. (2025). Feasibility trial of the My Health Coach app for adults with fetal alcohol spectrum disorders. Research in Developmental Disabilities, 164, 105053.
View article
Ongoing Work
A third Lay of the Land survey on funded service and unfunded support use among diagnosed adults is currently underway.
ALC members continue to serve as full team members, advisors, and co-researchers on university and multi-site projects that center the living experience of adults with FASD.