In Canada, a group of adults with diagnosed FASD formed a group over 15 years ago to advocate for themselves and others who have FASD.
They’re called the Adult Leadership Committee (ALC) of FASD Changemakers and believe that those affected by FASD should be included in any dialogue around the disorder – and in fact direct it where possible. Their motto is "Nothing about us without us."
The group is made up of (left to right in the photo above) Justin Mitchell, CJ Lutke, Myles Himmelreich, Katrina Griffin, Anique Lutke and Emily Hargrove (not present). These individuals with FASD have redefined what success means for those with neurodiversity and they use their lived experience to work as consultants, advisors, trainers, presenters, mentors, group moderators, bloggers, and research project members.
They also develop their own projects, the results of which have been utilised by institutions, organisations and government. Their ground-breaking ‘Lay of the Land Survey’ on the health and physical issues of over 500 adults with FASD was published in 2020 and received international attention.
The findings of the survey showed clearly that FASD is not just a brain and behaviour issue, but that those with prenatal alcohol exposure have higher frequencies of a wide range of health. ‘The Lay of the Land: FASD as a Whole-Body Diagnosis’ was published as a chapter in The Routledge Handbook of Social Work and Addictive Behaviours. Their second Lay of the Land Survey on ‘Quality of Life’ of 468 Adults with FASD, released some preliminary results in March of 2021.
There are a number of presentation videos from a recent Changemakers conference here – they make for inspiring watching!
You can hear more from CJ Lutke and Kat Griffin in a podcast from FASD Hope here.
CJ Lutke’s Blog at NOFASD is here - https://www.nofasd.org.au/community/cj-lutke-blog/
The Changemakers instagram - https://www.instagram.com/fasdchangemakers.alc/
Twitter - https://www.twitter.com/FASDChangeMakrs/
The Changemakers do not have their own website as such (yet) but you'll find more about them in a list of their incredible biographies if you click here, thanks to the ICCFASD (Interagency Coordinating Committee on Fetal Alcohol Spectrum Disorders), who hosted the Changemakers in their 1 April 2022 presentation of their 'Lay of the Land Survey: Equality vs Equity – What 468 Adults with FASD Want You to Know'.
