ALC of FASD Changemakers: The Language of Diagnosis: The Unintended Messages in the Language We Use….or Don’t Use

Live Interactive Online Training offered on Zoom

Date:  Tuesday, December 16, 2025
Time:  1:00 – 3:00 pm EST, 12-2pm Ct, 11-1pm MT, 10-12pm PST
Introductory Training:  FREE

Training Description:

This presentation came about as the result of the ALC being asked to give the province (state) wide Salzberg Memorial Ethics Lecture for the Provincial Health Services of British Columbia. The ALC was the first and only person/group ever asked to provide this annual lecture who was not an ethics expert.  We titled it “The Language of Diagnosis: The Unintended Messages in the Language We Use”. After reading the description for what the ALC was asked to talk about in that presentation, which included the “impact of labelling”, and the words “increasing resilience and capacity”, the ALC members talked a long time about what we think we can, want to – and should – tell you about those “unintended messages” from the point of view of many adults who have FASD and the teens we mentor, and the children we all once were, because “unintended” messages all to easily become unintentionally “intended” messages. “Unintended messages” and “labelling” have a major – and traumatic – impact, and the KEY one, the one that people with FASD hear everywhere, from many, many different people and places, over and over again, is that there seems to be something terribly wrong about having FASD. The ALC want people to think about this, to consider what role we all play and how we might do things so that all messages are intended, effective, supportive and useful, because resilience only happens when what is said is what is heard, and what is actually meant.

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

Learning Objectives:

• Identify how diagnostic and labeling language impacts people with FASD and shapes self-perception.
• Analyze how professional language may reinforce stigma or suggest something is “wrong” with having FASD.
• Apply communication strategies that promote understanding, resilience, and inclusion.

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 Committee (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 28 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.