Justin Shepherd, BFA, is an American filmmaker, FASD self-advocate, speaker, educator, and member of the Adult Leadership Cooperative of FASD Changemakers whose advocacy journey began in an unusual way: he entered the FASD field as a filmmaker trying to tell other people’s stories and discovered in the process that FASD was also part of his own story.
Justin holds a Bachelor of Fine Arts in Performing Arts from Western Washington University and has worked professionally as an actor, writer, director, comedian, and filmmaker. During the COVID-19 pandemic, he became involved in creating The FASD Project, a documentary initiative designed to increase public understanding of prenatal alcohol exposure and FASD. The project took him across the United States interviewing people with FASD, families, advocates, researchers, and professionals.
While making the film, Justin began recognizing similarities between the experiences people described and his own life. That process eventually led him to seek an assessment, and he was diagnosed with FASD/ARND in his early forties. At a 2023 federal FASD meeting, Justin described the unusual experience of already being part of the FASD community before discovering that he himself met diagnostic criteria.
The diagnosis transformed Justin’s role from filmmaker and ally into self-advocate. He has since spoken at national conferences, federal meetings, research workshops, and public events about adult diagnosis, health care, individualized support, stigma, and the importance of understanding FASD as a lifelong disability.
Justin has also become increasingly involved in justice-system advocacy. At the 2024 International Research Conference on FASD, he presented findings from FASD Changemakers research concerning adults with FASD and the justice system, including experiences as defendants, witnesses, and victims.
Within the Adult Leadership Cooperative of FASD Changemakers, Justin brings a distinctive combination of storytelling, film, research translation, late-diagnosis experience, public communication, and justice-system advocacy. His work demonstrates how personal narrative and research can be translated into messages that reach audiences far beyond traditional FASD settings.