ALC of FASD Changemakers: ALC of FASD Changemakers: Forgotten or Ignored? FASD as the Adult Orphan of Disability Does Anyone Care?

Live Interactive Online Training offered on Zoom

Date:  Tuesday, May 12, 2026
Time:  1:00 – 3:00 pm EST, 12-2pm Ct, 11-1pm MT, 10-12pm PST
Cost:  FREE

Description:

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 Committee (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.

The Florida Center for Early Childhood, home to Florida’s only FASD Diagnostic Clinics, located in Sarasota, Orlando, and the panhandle.

Presenters:

CJ Lutke – Canada
CJ Lutke, who is 41, was diagnosed with full FAS at birth and adopted by her foster family at age five, who had already adopted her older brother and sister who also have FASD.  She is a well-known speaker on FASD, having presented at and participated in many conferences, seminars, training sessions and other events for over 20 years.  CJ is a systems changer and advocate, provides advice and consultation and participates as an advisor and team member for different research projects.  She currently sits on various committees, including one to make changes to the family court system in British Columbia (BC), chaired by the Chief Justice of the Supreme Court of BC, and has just been asked to be on a research project on suicidality in those with FASD by the Centre for Addiction and Mental Health, the national centre in Canada.  She provides mentoring to younger adults with FASD and is the author of an on-line blog that is hosted by NOFASD Australia which is followed globally.  As well, CJ has been a member of the Adult Leadership Collaborative (ALC) of FASD Changemakers for 15 year and was one of its founders.  She was the co-lead on their first ground-breaking Lay of the Land Survey on the health and physical issues of adults with diagnosed FASD that has received wide international attention and was published in 2020.  CJ was the lead author on their second Lay of the Land Survey on the Quality of Life of Adults with diagnosed FASD, results of which have been presented widely including to NIAAA and were published in 2024.  As well, CJ became an adoptive parent when she adopted her now 12-year-old son (with FASD) from foster care when he was seven. CJ believes that those with FASD must challenge perceptions about possibilities and outcomes, find their purpose and change the future.  Her goal is to help others with FASD find their voice and to understand that we are greater when we work together.

Maggie May – Ireland
Maggie May, who is 29 years old, was diagnosed at the age of five with FAS in foster care, where she grew up.  She was born in and has lived her entire life in Ireland.  She is a well-known speaker on FASD, having presented widely, moderates several on-line groups including the largest global online support group for teens and adults with FASD and provides online mentoring to teens with FASD in several countries.  Maggie  is a systems changed and advocate and has been a member of the ALC for 5 years.  She works for FASD UK.  She is currently an expert advisory committee member for the development of a health app for adults with FASD by the University of Rochester, USA.  Maggie’s goal is to help audiences change the way they view FASD, educate society to build environments for success, and empower those with FASD to find their own voices, purpose and the courage to be who they are and achieve what they want to do.