Living with FASD Panel ft. Living Experts and Supportive Connections - February 2026
Summary
How do we support those living with FASD to thrive and flourish? Our Living Expert panelists came together to discuss how FASD has impacted their lives and which support strategies have been the most helpful for them. Participants heard about addressing the stigma of FASD diagnosis, how to support success, navigating sibling relationships and real stories of challenges and celebrations from Living Experts and their family members. The panel was moderated by Sylvia Gibbons.
Soundbites & Takeaways We Loved!
Quotes from panelists that we loved!
"It's not who I am, it's what I have,"
"You're worth fighting for, you are worth loving,"
"Everyone with FASD is different,"
"My parents know that they're still parents, they're still parenting even if it doesn't look like how it 'should' at our age [as adults],"
"I had to learn to ask for help, even if it is difficult to admit that I need it,"
Biggest misconceptions of FASD as shared by panelists:
That folks with FASD can't learn skills that support their autonomy, such as driving, working or volunteering, and care tasks.
That needing help to do certain things, means someone is "less than" others who may be able to do things with more independence.
That it is the individual with FASD who was the one who used alcohol, which led to the condition.
What is something people can do to support those with FASD be successful as shared by panelists:
Balance encouragement with realistic expectations to keep moving towards success.
Patience, "Sometimes I need to learn something in different ways and multiple times for it to stick".
Familiarity and stability help to support regulation; change can be a trigger for dysregulation.
As a Human or caregiver, modelling understanding and confidence is a big part of buffering against stigma and shame.
When supportive friends and family focus on reducing shame, help can become easier to accept.
"When our caregivers become our biggest advocates.
FASD affects physical traits and how the brain functions, which impacts an individual's internal world and how they respond to things.
FASD's impact on how the brain functions is invisible, making it harder to understand and easier to misinterpret as something else.
Receiving a diagnosis can be a relief because it can lead to an understanding of why certain challenges are being experienced.
For young people who are involved in the child welfare system, it can be confusing as to exactly what is going on as there are many factors to consider, such as trauma, learning disabilities, and other potential diagnoses.
For supportive friends and family, knowing about a diagnosis can help them understand why certain challenges are being experienced and, more importantly, the "how" of supporting.
One panelist spoke about challenges with certain kinds of transactional social interactions (such as trading or buying/selling), and now seeks out support for those scenarios.
Asking for help with some tasks can be challenging because of feelings of shame ("I should be old enough to do this myself") and feelings of being a burden ("I don't want to bug this person")
It can be difficult balancing knowing that help is needed, but also wanting to be "treated like an adult", one panelist described how these opposing needs led them to feel a lot of anger and lash out.
When things are going well, sometimes the brain anticipates trauma and failure because of patterns of past life experience, this can lead folks with FASD to self-sabotage in anticipation because it can provide a sense of control over outcomes (positive or negative).
For those in supportive roles, our own expectations of what the relationship or success looks like or feels like contributes to confusion and distress for everyone when the reality is different.
