Taking the Fear Out of the Diagnosis - December 2025
Summary
No one is excited about finding out that they, or someone they love is impacted by a preventable, life-long brain injury. But knowledge is power, knowledge brings understanding. In this presentation, we discussed the many reasons how and why knowing and accepting a diagnosis of fetal alcohol spectrum disorder can be life changing in a positive way. Building on the presentations earlier this season - Nervous System Basics, Somatic Healing, and Late Diagnosis - this education session was aimed at tying the learning together in a hopeful and realistic way.
Soundbites & Takeaways We Loved!
Knowledge and understanding can make the journey easier
It can be helpful to stay open to the idea that Living Experts experienced in-utero exposure to substances and consider accommodations rather than rule it out and ignore the possibility, which can make a late-in-life diagnosis harder to wrap our heads around
Understanding what’s going on in the brain can help us select appropriate support strategies
Understanding developmental stages is critical in understanding how to approach offering compassionate support
We can see the practical changes to brain structure (specifically the Corpus Callosum) in people impacted by FASD, this impacts how the brain functions
Those with FASD are often accused of lying when what may really be happening is confabulation, see the video included below for details
People with FASD can have trouble with receptive communication, which involves listening to and processing information, learn more with the video below
Kim shared that she wonders if challenges with social situations contribute to social isolation of Living Experts, especially those with who have FASD
Shame can be a significant contributor to withdrawing during difficult times
Anecdotally, success and intimacy in relationships have come later in life, after a diagnosis, for those impacted by FASD
Actionable Ideas & Activities
Watch What "The Dress" Teaches Us About Lying, FASD, and Perception (5 Minutes)
Watch Helping People with FASD Process What We Are Saying (4 Minutes)
Get ideas from the Winter Holiday FASD Toolkit by fasdNL Diagnostic Network
Browse 101 Holiday Strategies by the Edmonton and area Fetal Alcohol Network Society (EFAN)
Visit the Health Nexus website for FASD supports and trainings