ALC of FASD Changemakers: Behind the Mask – Unravelling Grief in People with FASD: It’s Complicated

Live Interactive Online Training offered on Zoom

Date:  Tuesday, January 20, 2026
Time:  1:00 – 3:00 pm EST, 12-2pm Ct, 11-1pm MT, 10-12pm PST
Cost:  FREE

Training Description:

The grief attached to FASD is something individuals with FASD experience across their lifetimes in almost every area of life, starting in childhood. There is little awareness of how this has impacted those with FASD across the ages, particularly by adulthood. With it goes an unrecognized, unacknowledged, and almost always avoided on-going process of grieving multiple losses that continue to occur in the absence of recognition. Rarely ever talked about, let alone understood, by professionals, families or by those with FASD themselves, this is a missed opportunity often at the root of so many failures and difficulties those with FASD experience. Understanding the “don’t ask, don’t tell, never talk about it boxes of denial”, what they are, what they look like and why they happen, is essential for providing better mental health services for individuals with FASD. Their quality of life, especially by adulthood, has been significantly negatively impacted by ignorance of the need to deal with these kinds of losses. This workshop is developed from the personal experience and expertise of the ALC of FASD Changemakers, and their work and interactions with other adults who have experienced these losses while growing up and across their lifespans. It is what they wish adults had understood when they were children but were too young to understand and could not give voice to. It will bring needed representation of the different types of grief experienced by those with FASD into the mainstream of FASD professional work, support, and service delivery. It will underscore the importance of complicated grief, as an essential mental health issue to address, and the importance of recognizing, allowing, and supporting individuals with FASD themselves to grieve so they can move on with their lives, regardless of their ages.

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

Learning Objectives:

• Identify common forms of lifelong grief experienced by individuals with FASD.
• Recognize denial patterns that prevent acknowledgment of FASD-related grief.
• Apply grief-informed approaches to support individuals with FASD in professional practice.

ALC – FASD Changemakers

 The International Adult Leadership Collaborative (ALC) of FASD Changemakers is a well known group of citizen researchers and experts who each have diagnosed FASD. It is made up of 16 members. As a group, they have experienced all the events commonly associated with FASD but have learned how to overcome obstacles, maximize potential and re-define success. They use their combined living experience to work together as consultants, advisors, trainers, presenters, mentors, group moderators, bloggers, and as research project team members for universities and national organizations, centres and associations in several countries.   They have organized, initiated, designed, developed and led full 3-day program conferences for teens and adults with FASD in both Vancouver and Seattle since 2014.  As well, they develop and lead their own survey research, which has received wide interest by researchers, institutions, organizations, systems, and government and is currently being used to help focus research directions and questions.  Their first survey on the health of 500 adults with diagnosed FASD was published in 2020, and their second survey on the quality of life of 450 adults with diagnosed FASD was published in 2024.  A third Lay of the Land survey is currently in the initial stages of discussion.

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.