It wasn’t until we started to find the stories and experiences of adults, young adults, and teens living with FASD that we truly began to see a way forward past the diagnosis. We began to hear and read first person accounts from people who know what it feels like to walk through the world with this invisible disability.
So much of what little focus our society has for FASD is spent on prevention. As FASD is avoidable, this is important and urgent.
And yet, so many people are here with us, walking amongst us, moving forward despite so much negativity and uninformed judgement thrown their way. There are many brave and thoughtful people who face these challenges every day who have decided to speak publicly about their experience with FASD, in order to help us all better understand.
Our son has already benefited from the better understanding we have of him as a result of the experiences shared by adults with FASD. They are awesome role models.
This list is a work in progress. We really admire the courage, caring and leadership it takes for people to share their experiences in this way. We always welcome the chance to learn about the work of others with FASD who are using their experiences to help others – we know this list is only the tip of the iceberg.
(We don’t know all of these people personally – the information linked here is just a subset of what is out there, available on the web. Seek out others to inspire and you will find them.)
National FASD Advisory Committee (UK) – the adults with FASD in this group are working to raise the voices of adults with FASD in the UK. They are advising the National Organisation for Foetal Alcohol Syndrome-UK on a transitions to adulthood project.
Lee Harvey-Heath is the chair of the National FASD Advisory Committee. Check out his Diagnosed with Fetal Alcohol Spectrum Disorder (FASD). Lee founded FASD Devon and Cornwall dedicated to helping people understand FASD. Here he has a message for FASD superheroes who might be getting bullied. Love his optimism!
Another great video clip from Lee is here: “Personal Reflections, What Teachers, Educators and Others Should Know About FASD“.
Nyrene Cox is an adult who speaks out about the challenges facing adults seeking a diagnosis. In this video she spoke in Parliament about her right to a diagnosis.
R.J. Formanek is an adult who was diagnosed at 47. He has set up an amazing Facebook group that includes a lot of inspiring adults with FASD – Flying with Broken Wings. There’s a great piece he wrote on “Getting Burned with FASD” that explores the problem people with FASD can have with language. Please check out this video interview with Jeff Noble as part of the FASDForever series.
Savanna Pietrantonio is an adult with FASD who is an FASD Survival Strategy Teacher and one of the administrators for the Flying With Broken Wings Facebook group. Her insights into meltdowns were among the most important steps for our family’s personal journey toward greater understanding and were in fact the prompt for the first ever post on this blog and part of the inspiration for one of the most viewed posts, FASD Meltdowns. For more information, please see her 8 Reasons for FASD Meltdowns and this article about her FASD service dog.
CJ Lutke has written a powerful post, “Words of Experience to Teens and Adults with FASD,” for NOFASD-Australia.
Justin Veale – a young man with FASD, who offers advice on how to help people with FASD. This is a brave and eloquent young man. More about his story is available here.
Myles Himmelreich, “Living with FASD” provides an in-depth insight into what it’s like to grow up with FASD, as part of an ongoing video series by Edmonton and area Fetal Alcohol Network Society. He describes what it was like as a young person trying to understand why he found some things hard to understand.
Andrew Petersen, is an athlete and advocate – a Special Olympian who raises awareness about FASD with high school students and through his running. He has qualified to run the 2019 Boston Marathon. His efforts have taken him to the White House where he met President Obama. He was featured on ESPN. He has been a popular vote top 10 finalist for the Runner’s World cover competition, seeking to be the first athlete with an intellectual disability on a major sports magazine cover. You can read more about Andrew’s story here and follow his journey via his Facbook group here.
Sam Moehlig, a Human Rights Campaign Youth Ambassador, helps others understand what it was like growing up with both FASD and gender dysphoria. A leader in the trans community, Sam also is a competitive gymnast and a third degree black belt in Taekwondo.
Kenny LaJoy – is a teen who writes about his experiences growing up with FASD on the blog he named “Uncommon Noggin” – where he and his mom Cindy write about their lives. In this powerful post, Kenny talks about “Being Aware [of his FASD]: A Blessing or Curse?”
Dominique Maasdam is a teen who is modelling for New Look and changing the way people view those with FASD and autism. She was featured in this article.
Rachel Jackson – is a teen with FASD who has started sharing her experiences. She has a new YouTube channel, MyLifeWithFASD Jackson. Rachel has spoken in Parliament about FASD and been on the BBC and other major tv news. She wrote this piece for a teacher who asked her to share her truth without worrying about grammar or spelling has helped thousands better understand what it’s like for a teen with FASD. Rachel and her family do great work through Much Laughter: Stand Up for FASD.
In this video she has advice for other young people with FASD:
Andy Jackson – and Rachel were featured on BBC Politics Live. Andy has travelled extensively. He has taught soccer/football in Uganda, he has worked in Finland. He previously served as a special young ambassador for Mencap and serves on the National FASD Advisory Committee (see above).
Rachelle – A powerful performance of spoken word – “Dear FAS…”
FASD is Real – This great awareness raising effort highlighted 90 real people with FASD leading real lives.
Blank Pages – a blog by Kesha Michaud, a young woman with ARND
The Best I Can Be: Living with Fetal Alcohol Syndrome or Effects and Braided Cord: Tough Times In and Out – books by Liz Kulp, a woman with FASD who together with her mom has used her experiences to help others.
Shayla Katrick, a Fetal Alcohol Spectrum Disorder (FASD) advocate focuses on wellness
Some Adults with FASD on Twitter:
@FASDChangeMakrs – Myles Himmelreich, CJ Lutke, Katrina Griffin, Justin Mitchell and Anique Lutke. We are the FASD Change Makers for the Adult Leadership Committee.
@RJ_Formanek (see above)
@LeeHarveyH (see above)