The FASD Symposium and resulting White Papers, a type of paper that gives an in-depth report that explains a complex problem and proposes a specific solution, came from the joining of two ideas. One was a dream of mine, which you can read about here, to “have a nationwide discussion among all those relevant to the FASD community, but centering living experience, that resulted in shared goals for the FASD movement.”
The second was a suggestion from FASD United’s COO, Jennifer Wisdahl, who remembered that a similar event had been done in 2009 among federal agencies and researchers. There was a resulting report of 10 recommendations.
The 2009 FASD Task Force Recommendations were well-written and informed by many different areas of research. The work also included a few representatives from FASD United (then NOFAS) and two living experience self-advocates. The report is an important call to action; it was the first time FASD had an informed plan for the movement – intended for researchers and agencies at the time. It provided 10 primary Recommendations. For example, “Enhance strong, collaborative, interagency leadership at state and national levels (that includes parent representation) to inform legislators, policymakers, and the public”. Importantly, these recommendations hadn’t been revisited since its publication in 2009.
The report was collecting dust on the shelf.
More likely, it was sitting in a file, unopened. Or in links, broken. FASD United CEO, Tom Donaldson, was able to find a hard copy among the shelves of past reports in the Washington, DC, office. We also found the digital copy online.
Immediately, it was clear that the Recommendations needed to be updated. Not just based on new research but based on the increased centering of living experience in the FASD movement. Since 2009, even researcher perspectives have shifted from calling for a multi-disciplinary diagnosis to a more streamlined, less expensive approach to diagnosis. Growth of groups like the Adult Leadership Cooperative of FASD Changemakers has brought “nothing about us without us” into the FASD space, revealing how necessary it is to have multiple people with FASD involved in projects concerning them.
The report offered the perfect jumping-off place to start a bigger, broader conversation with the FASD community. As we familiarized ourselves with the report, we saw the opportunity. The 2009 Recommendations set the conversation up perfectly, so FASD United could use our creative energy to make it accessible, fun, and applicable to professionals and people with living experience. So far, we have employed building blocks, flags, buckets, and lots of colored markers into our “data collection”. We look for ways to level the playing field in the room, even going as far as to remove post-nominals (Ex. PhD, MD, LMFT, etc.) from the Acknowledgements page in the White Papers.
Now that we are over halfway done with the 3-year project, I’ve learned to always revisit the old reports on the shelf. Not just because it’s easier to start where you left off, but also because pushing forward only gets you so far if you don’t reflect on the past. We need to see how far we’ve come. We need to see what isn’t working as well as we thought and be empowered to change our course. We need to include more people in conversations from which they were previously left out. The 2009 Report invited a birth mother and person with FASD to their 2009 meeting; however, our community now understands that when you’ve met one person with FASD, you’ve only met one person with FASD. One perspective does not cover adults and aging folks with FASD, or people of color with FASD, or the non-adoptee and adoptee perspectives.
Additionally, the more we revisit a report, the more we have shared language and priorities as a community and movement. We can’t—and shouldn’t – take on all this work on our own. Not as individuals or as organizations. Understanding the larger movement allows you to feel more comfortable taking on a manageable piece because you can trust that others are working in other areas.
This important work continues, and we want you to be a part of it. We have 3 requests:
- Read through the first two white papers: White Paper 1.1 and White Paper 1.2. This will give you an idea of what work has been done, what recommendations have come forward, and what is still left to do.
- Register for FASD Impact Week (September 27 – 30, 2026) and the FASD Symposium (September 28) to join this effort before the first cycle is complete! National FASD Impact Week, hosted by FASD United, is a free, annual gathering that brings together individuals with FASD, families, professionals, researchers, agencies, and community partners from across the country. Held each September during FASD Awareness Month in Washington, DC, National FASD Impact Week offers a welcoming space to learn, connect, and share experiences.
- Think about where this can go next, or where you can take it. This project multiplies in impact the more it is taken off the shelf, used to guide action, and shared among people doing this work. Feel welcome to use the FASD White Papers however best serves your interests, goals, and community.