For more than four decades, adults living with Fetal Alcohol Spectrum Disorder (FASD) have been described as the “orphan child of disability,” a term originally used by a provincial court judge in British Columbia who repeatedly encountered individuals with FASD in the justice system without appropriate diagnosis, understanding, or support. Unfortunately, this description remains strikingly relevant today.

In this workshop, the FASD Changemakers Adult Leadership Cooperative (ALC) will explore the systemic and societal factors that have contributed to the ongoing marginalization of adults with FASD. Participants will examine how missed or delayed diagnosis, lack of informed support systems, and widespread misunderstanding of brain-based disabilities have left many adults with FASD overlooked by service systems designed to help them.

Through lived experience perspectives and critical discussion, the presenters will examine what has gone wrong over the past 40 years and why many adults with FASD continue to fall through the cracks in health care, social services, education, and the justice system. The session will challenge participants to reflect on the roles systems and professionals play in perpetuating or addressing these gaps.

Participants will also be encouraged to consider what must change moving forward. By identifying key barriers and exploring practical ways to improve awareness, response, and support for adults with FASD, this workshop aims to shift the conversation from understanding the problem to becoming part of meaningful solutions for the future.

Learning Objectives:

• Define the concept of the “orphan child of disability” as it relates to adults living with Fetal Alcohol Spectrum Disorder (FASD).
• Identify systemic barriers that contribute to missed diagnosis, misunderstanding, and lack of appropriate support for adults with FASD.
• Describe how gaps across service systems (health care, education, social services, and justice) impact outcomes for individuals with FASD.
• Discuss strategies professionals can use to improve recognition, support, and response for adults living with FASD.