For People Living with an FASD

This page includes information and experience from people who have an FASD and the families and professionals who support them.











 

 

"Nothing About Us Without Us"
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."

FASD Changemakers Interview  

A FASD Changemakers’ Lay of the Land Survey: Equality vs Equity – What 468 Adults with FASD Want You to Know   CJ Lutke, Myles Himmelreich, Katrina Griffin, Justin Mitchell, Anique Lutke, Emily Hargrove
The Adult Leadership Committee (ALC) of FASD Changemakers is a renowned group of citizen researchers and experts who each has FASD. It is made up of CJ Lutke, Myles Himmelreich, Katrina Griffin, Justin Mitchell, Anique Lutke and Emily Hargrove, a group who have experienced all the events commonly associated with FASD but have learned how to overcome obstacles, maximize potential and re-define success. They use their combined lived experience to work together as consultants, advisors, trainers, presenters, mentors, group moderators, bloggers, and as various university research project team members. They develop and lead their own survey research, which has received wide interest by institutions and is currently being used to help focus research directions and questions.
Lutke, CJ, et al. FASD: The Living Experience of People with Fetal Alcohol Spectrum Disorder—Results of an Anonymous Survey
Disabilities 2024, 4(2), 332-347; https://doi.org/10.3390/disabilities4020022

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PROOF Alliance  "You're not alone"

Tips for daily life when you have an FASD.

 

FASD HUB Australia    People with an FASD, and their families, share their experience and wisdom.
What I wish people knew about me    Living with an FASD
Jess and Sue's Story   Mother and adult daughter who has an FASD   Meet Jess and Sue. In this video they share their experience navigating the assessment and diagnosis process for FASD, and what a diagnosis of FASD has meant for their family.
Jazpa's Story   Adoptive mom and child with an FASD
Geraldine and Lola's Story  Mom and daughter with an FASD

Saskatchewan Prevention Institute

• Living with a Brain and Body Disability

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Government of Alberta Cross-Ministry Committee to Address FASD 2015

• Kiera Knowlton: Living with an FASD

CDC Fetal Alcohol Spectrum Disorder (FASD)

• Real Stories   Living with an FASD​

University of Rochester Mt. Hope Family Center

• Thriving While Living with an FASD
   

The Strengths and Positive Influences of Individuals with an FASD
Carson Kautz-Turnbull, University of Rochester, Mt Hope Family Center, 187 Edinburgh St., Rochester, NY, 14608, USA Tangeria R. Adams, Mt. Hope Family Center, University of Rochester, Rochester, NY 14608, USA. 585-275-2991 Christie L.M. Petrenko Research Associate and Assistant Professor, Mt. Hope Family Centre, University of Rochester, Rochester, NY 14608, USA

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Rodger, Ellen,and Goswell, Rosie. Fetal Alcohol Spectrum Disorder. Crabtree Publishing 2014.  Written for the teen with FASD and their families.

 

​Stigma   Language Matters

FASD is a developmental disability. Like other people with disabilities, people with FASD have many strengths and skills and can lead happy and productive lives. The language we use can challenge stereotypes about people with FASD, promote compassion for women who drank during their pregnancy (for whatever reason), and help others to see people with FASD as more than a disability. Thank you CANFASD (Canada FASD Research Network) for this information on "Talking About FASD".

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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FASD United Family Navigator
The FASD United Family Navigator program provides individuals living with fetal alcohol spectrum disorders (FASD), their family members, caregivers and supporters with expert, confidential support and referrals. This includes people who are pregnant or intending to become pregnant that may have questions about alcohol or substance use. Our Navigators serve members of the FASD community and anyone in need of one-on-one peer support, referrals to resources and services, information about prenatal alcohol exposure, or with a question about any facet of FASD. This service is free and does not require a referral. Professionals who serve the FASD community or who would like information on alcohol or substance use and pregnancy are welcome to connect.
An FASD Family Navigator can be reached from 9am-10pm Eastern Time, Monday through Friday via phone at 202-785-4585 or by completing the form here








 

Canada FASD Research Network CanFASD

• Strengths Among Individuals with FASD 

      White paper by Katherine Flannigan, Kelly Harding, Dorothy Reid, and the Family Advisory Committee

• Individuals with Fetal Alcohol Spectrum Disorder and Experiences of Stigma  Kirsten Morrison, BA, et al.