FASD Self-Advocate Emily Travis Hargrove, an active member of the ALC FASD Changemakers has written and released a book! FASD is my Superpower: Helping Kids Understand the Strengths of Their Diagnosis is a short book written to help kids living with FASD understand the power and strength of their FASD diagnosis, which has historically been stigmatized. To explore and promote this book, FASD United conducted an interview with its author.

Written by an individual diagnosed with FASD, Emily Travis Hargrove has firsthand experience and over 15 years in the FASD advocacy field. As a Ph.D. candidate with a research focus on FASD, the author also understands the scientific ins and outs of the diagnosis but writes this book in a fun and lighthearted way, perfectly suitable for families just wanting to know more about the positive side of FASD. This book also provides the reader with opportunities to personalize the book to themselves by short-form journaling and doodling, allowing them to discuss topics such as strengths and goals as they look toward the future with hope!

When asked what inspired her to write and publish this book, Emily explains, “This book is for all of those living with FASD—the FASD Superheroes. So often this diagnosis is associated with negative prognoses, stigma, and, yes, even shame. Indeed, there are challenges, but that’s what makes us Superheroes—we get up every day and press forward. From my perspective, particularly growing up knowing I had an FASD, there was very little information, with the exception of all the ways I would not be successful, be that in school, work, or just throughout life. I believe we are not burdens on society, but instead need a unique understanding. We have seen a positive shift toward this understanding and inclusion for other disabilities, and it is about time we see this same shift for FASD! This book is one pebble in the water, so to speak, that will hopefully be a part of the ripple effect of FASD inclusion.“

An important facet of this shift for inclusion and understanding of disability generally, and FASD specifically, is in more positive framing: “I like to think that the fact that individuals with FASD get up and keep pushing forward, even in the face of challenges, gives them a unique set of strengths.” Another key theme of Emily’s book is hope, she explains that “Hope means to look to the future with optimistic anticipation. For those living with FASD, this means being able to look beyond the negative messaging that so often surrounds the diagnosis; to see each challenge as an opportunity to cultivate strengths, all while learning to be kind to oneself along the way, offering the same sort of compassion we grant others. Hope for those with FASD means not giving up on setting goals and having dreams, knowing that it is ok if they change along the journey. If hope means to look to the future with optimistic anticipation, this means living with the expectation that step by step, one small change at a time, we will see a future that embraces the unique experience of those with FASD, not seeing them as “less than” but as valuable, valid, and meaningful and fully welcomed at the table.”

Emily’s book wants to emphasize this lens of hope and positivity, and does so: “Throughout this book, these different strengths are explored from compassion to resilience to persistence to faith and others, the reader is reminded that the living experiences and perspective of FASD cultivates positive attributes. Reading this book with journal prompts reminds the reader that they are not alone in facing challenges, and it is my hope that it adds fuel to help them run the FASD race enthusiastically.”

When describing the book’s contents, Emily says, “Overall, I loved writing this book from the perspective of myself with the help of my emotional support dog, Willow, after my beloved Yorkie. We guide the reader throughout the book/journal where we address different challenges that they may have with their body and brain followed by some strategies. I also share personal insights and experiences connecting with the reader. Specifically, there was one section that meant a lot to me. As a person of faith, I particularly enjoyed bringing this aspect into this interactive book. Knowing not everyone will connect with my personal faith, I also left this section open to words of encouragement.”

Her book is an extension of her academic journey, as a Ph.D candidate, Emily is in the final stages (a huge congratulations!) of her dissertation titled, How Adults with FASD Describe Spiritual Experiences and Faith Formation. She says, “I am eager to explore this aspect of development for the adult population. There is little information for adults with FASD and even less information on their spiritual experiences. My desire is that this study will lay the groundwork for further studies and exploration of this aspect, providing insight for those who want to better support and understand FASD from a holistic perspective.”

Emily is fueled by her passion for FASD, advocacy, and disability which has helped shape her as a writer, researcher, and person. “FASD is not who I am, though it certainly plays a prominent role. As a writer, I want first to connect with the reader. This is so very important. So often those of us with an FASD are spoken about, spoken to, but not spoken with. There is a lack of connection that says, “I see you and I value your experiences.” Because I have lived (and continue to live) these experiences, I am able to speak directly to them, but in a lighthearted way. It is important that the language chosen is not just FASD friendly, but is absent of self-shame and even absent of condemnation of birth mothers and life-giving families. As a researcher, I am able to look past the science (although this is necessary and deeply intriguing) and address more than just literary gaps. I am able to ask, “What does my community need/want?” and not just what is best for science’s sake. Science is powerful, but putting that into well-informed, integral practice is empowering! Personally, my FASD has allowed me to see the world from a different perspective. It has allowed me to connect with others who have also felt disenfranchised and pushed to the side. It has lit a fire within me to raise my voice and fight for less stigma and more understanding.“

We are so proud of Emily for her continued contributions to the community and excited to follow her on her journey.

Visit her website here.

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