Written by Co-Lead Author, Emma Baldwin
The FASD Symposium White Paper presents the summarized results from discussions held during the 2024 FASD Symposium to co-create a national plan for advancing the FASD community and field.
“This paper is simultaneously more than I could have imagined, and exactly what I imagined. The part that I couldn’t have even dreamt of was the breadth of knowledge and experience people would bring to this project. What I did imagine, and will speak to, is the intention, inspiration, and structure of the event.”
The Story
I was introduced to the FASD community in high school, when my sibling was diagnosed with FASD. I latched onto the topic alongside my mom who, like most moms-to-kids-with-FASD, became ravenous for more information and resources to understand what was going on.
At the time, I was taking US History with one of my favorite teachers of all time, Mr. Ching. Mr. Ching taught me that movements have documents. Sustained movements have documented moments of history to learn from, preventing us from needing to “start from zero” again.
Mr. Ching also taught us through Socratic seminars.
Socratic Seminar: In a Socratic Seminar activity, students help one another understand the ideas, issues, and values reflected in a text through a group discussion format. Students are responsible for facilitating their group discussion around the ideas in the text; they shouldn’t use the discussion to assert their opinions or prove an argument.
Through this type of discussion, students practice how to listen to one another, make meaning, and find common ground while participating in a conversation.
I remember sitting in a Socratic Seminar one day. I was struggling to pay attention and thought, “I wish we could do this sort of thing with experts in FASD, and include people with FASD in the discussion”.
Since then, doing an expansive, comprehensive discussion of FASD with experts has been my career dream.
Shaping our History by Documenting It
Similar group discussions have happened in the FASD field and community. Most notably, the 2009 FASD Task Force Call to Action outlined 10 Recommendations for “Advancing Essential Servies and Research on Fetal Alcohol Spectrum Disorders”. This event, designed by FASD research legend Dr. Heather Carmichael Olson, collected feedback from federal agencies, researchers, and other professionals to create the recommendations.
The 2009 Call to Action is so important. It shows us what discussions we were having over 15 years ago, and how much progress we’ve made. It shows us that FASD isn’t new; awareness just hasn’t gained traction in society, research, or policy.
The FASD Symposium is meant to build onto that history and invite people into our “future-history”.
The Contributors
What makes this White Paper so impactful is the perspectives of those who co-created it. In 2024, our intention was to elevate living experience and level the playing field of voices engaged in the discussion.
- Perspectives represented people with FASD, caregivers, agencies, clinicians, researchers, social workers, educators, organizations, and more.
- The paper included more than 5 times the number of contributors than the 2009 Task Force Call to Action, totaling almost 100.
- 36% of Contributors identified as someone who has personal experience with FASD (as a self-advocate or caregiver).
- Most preparation for the FASD Symposium revolved around ensuring that no one had to do “homework” before coming into the room. FASD United staff and partners designed materials prioritizing visual images and plain language.
My Not-So Conclusion
I am proud of the first FASD Symposium White Paper, and I hope all who participated in this are as well. We at FASD United have received so much positive and constructive feedback that it’s hard to believe we are done… Probably because we aren’t done!
We are already preparing to host a bigger, better Symposium in September 2025. We expect to have more perspectives in the room and more streamlined ways of collecting more feedback from more people. I hope to see you there!
If you have any questions regarding the FASD Symposium or White Paper, please email Emma Baldwin at baldwin@FASDunited.org.