Heartwarming Stories from the World of FASD
When you first think of Fetal Alcohol Spectrum Disorder, what comes first to your mind? Is it people and strengths? We know the narrative has been tilted for too long toward negative, blame, shame and stigma. It still is. But things are changing. As awareness grows, there is a shift to strength based and success. We do highlight success during the 99 Days to FASDay series, but I was reminded about On the Wings of Success when someone in a group was looking for a book written by an adult with FASD. If you want to learn about FASD you need to go to the experts: those with lived experience. And that’s what this book does.
It is a collection of personal essays or reflections on the challenges and successes by eight adults with Fetal Alcohol Spectrum Disorder. Charlene Trudel, the author, states: The idea of this book came from a research paper that I needed to write for a course I was taking. I was shocked to discover much of the information I found online drew a very bleak future. She decided then that she would write a book of success stories. Her hope was to highlight the positive in the world of FASD.
Those of us who live in this world, either as individuals with FASD, caregivers or front-line support, know most of the information does focus on the negative. While this book was published in 2018, and the shift was already starting to move away from stigma, shame and blame, unfortunately it is a slow moving shift.
Stereotypes still exist. Most recently we saw that on a large scale with the SNL skit Winter Formal: Humour or ableist? and a Bill Maher Comedy Special, but in the last few years researchers are looking at strengths and success and individuals with FASD are advocating and sharing their voices, knowledge and expertise. Two FASD documentaries were released in the last couple years (The FASD Project and FASD The Hidden Disability) and another one (Embraced) is in the works. Unfortunately sad or sensational are stories that still “sell.” But these are people’s lives. Everyone deserves to have their strengths and interests validated, appreciated and encouraged. It is through understanding, compassion and connection we grow.
My only issue with the book is some outdated terms and language in the introduction. There is no mention that diagnostic terms differ depending where you live (which can be confusing) and the author does not use the new Canadian Diagnostic terms (which were introduced in 2015). Although the individuals do talk about their health challenges, there is no mention that FASD is recognized as a whole body disorder, with 428 co-occurring conditions (study published in 2016). One of the contributors is part of a research study that was published and presented in 2017. It was a Health Survey the FASD Adult Leadership Committee participated in. There is no mention with the physical (mostly facial) features listed that they account for less than 10% of individuals with FASD.
While some may see this as a minor point, I think if we share information to break stereotypes, the most up to date information should be used. But I do respect things change quickly and I don’t know when the final draft was submitted. I also realize once something is published information changes. I point it out only to keep it in mind as you read it and if you share information. I read somewhere the author was working on a second volume. Hopefully this information will be updated.
However the focus of the book is the stories of individuals with Fetal Alcohol Spectrum Disorder. Definitely ⭐️⭐️⭐️⭐️⭐️ for that. If you are a caregiver with a younger child you may see hope that there can be success. If you are an individual with FASD you will read about others who walk a similar path. If you are a frontline staff you will discover how better to work or serve people you work with or for. Each of the eight share what they had challenges with, why they had those challenges or how those challenges were exacerbated because they were ignored or misunderstood, what helped or could have helped and their best advice. Some of them also share people they looked up to or books they read. Their stories at times are difficult to read, but their insight lets us into their world. Their advice and ideas will help people now and others coming up behind them.
This book is for everyone. With estimates on average putting the prevalence of FASD at 3-5% of the general population (which is likely a conservative estimate), most people know someone with FASD – even if they don’t know they have FASD. Reading these reflections and experiences should help others understand that not all disabilities are visible and that every person has worth and abilities. A little understanding will go a long way.
Some of the names of the individuals I recognize, have met or seen them present. I learned a few details I didn’t know and I heard new ones from individuals I don’t know. Some of the contributors are married, others divorced. Some have children, work, advocate, mentor others or are continuing their education. I know one of them is an author with her own book and another mentions she created and published some comic books. As much as each individual is unique, there are similarities. One similarity was when accommodated and supported people do well. Another common thread in the stories is their recognition that a circle of support is important.
I don’t want to give too much away. I do recommend this book as it lets you into the FASD experience from the inside.
Thank you Charlene for expanding and sharing your research by compiling these stories into a book. Thank you Rebecca, Kiera, Myles, Joni, Kelly, Adrianna, Christopher and RJ for sharing your personal journey and your best advice. May you continue to do well and live life to the fullest.
If you are looking for more information on FASD and individuals with FASD, you can follow the 99 Days to FASDay series.
I also recommend The Canada FASD Research Network, PROOF Alliance or FASD United (USA), National FASD (UK) or NOFASD Australia as leaders of information in their respective countries.
If you are an adult with FASD looking for support, the group RJ runs on Facebook is still active: Flying with Broken Wings.
Check out fasd on the web for links.
Please note: I am not affiliated with the author or publisher, nor am I an affiliate of any book seller or receive any compensation for my review.