The first of two published researches with the Adult Leadership Collaborative Changemakers.

It was long suspected that adults with FASD face more health issues than the general population, but research was lacking—mainly because adults were hard to find. In 2016, the ALC launched a 260-question health survey for adults with diagnosed FASD, with only technical software support. Nearly 700 responses came in from people aged late teens to early sixties; 561 were usable. Preliminary results were shared in 2017, final data in 2019, and the survey published in 2020. This workshop shares key findings and how the survey led to several funded multi-site health studies.

Key Takeaways:

• Identify common physical and mental health challenges experienced by adults with Fetal Alcohol Spectrum Disorders (FASD), as reported in the ALC survey.
• Explain how early identification and documentation of FASD in adulthood can inform treatment planning, service coordination, and client advocacy.
• Analyze the implications of the ALC survey findings for clinical practice, including the need for multidisciplinary approaches and improved access to care for adults with FASD.

Presenters:

CJ Lutke,  ALC FASD Changemakers, Vancouver, BC

CJ Lutke is a respected FASD advocate, speaker, and systems change leader. Diagnosed with full FAS at birth, she was adopted at age five, along with her siblings who also have FASD. For over 20 years, she’s led trainings, presented at conferences, and contributed to FASD research.

A founding member of the FASD Changemakers Adult Leadership Committee, CJ co-led the Lay of the Land surveys on adult health and quality of life. She serves on advisory groups, including a BC family court reform committee, and recently joined a national CAMH project on FASD and suicidality.

CJ mentors young adults with FASD, blogs for NOFASD Australia, and is the adoptive parent of a 12-year-old son with FASD. Her mission is to empower others with FASD to lead change.

Maggie May, ALC FASD Changemakers, Ireland

Maggie May, 28, was diagnosed with FAS at age five while in foster care, where she was raised. Born and based in Ireland, she is a well-known FASD speaker and advocate. She moderates several online groups, including the largest global support group for teens and adults with FASD, and mentors youth with FASD in multiple countries.

A member of the FASD Changemakers Adult Leadership Committee for five years, Maggie works with FASD UK and serves on the expert advisory committee for a University of Rochester health app for adults with FASD. Her mission is to shift how FASD is viewed, promote inclusive environments, and empower others with FASD to find their voice and purpose.