Research has often focused on the living experiences of individuals with fetal alcohol spectrum disorder (FASD) and their caregivers but there has been little research focused on the experiences of their siblings.
A new issue paper from the Canada FASD Research Network (CanFASD), FASD and Siblings: A Review of Current Knowledge, explores the unique experiences of siblings and highlights why they should be recognized as an important part of the family support system. Drawing on both research and lived experience, the paper sheds light on the challenges siblings face, as well as the strengths they develop.
Growing up with a sibling with FASD
For siblings of individuals with FASD, these relationships can involve additional responsibilities. Some take on caregiving roles at a young age, helping manage daily routines or supporting their parents during challenging situations. While many siblings are proud to help, these responsibilities can sometimes lead to stress, anxiety, and feelings of growing up too quickly, particularly when families lack adequate supports.
Another challenge is feeling overlooked. Because children with FASD often require significant time and attention, siblings may experience what researchers call the “Glass Child” phenomenon, where they feel their own needs receive less attention. This can affect their emotional wellbeing if they do not have opportunities to express their feelings and receive support.
Strengths that often go unnoticed
Despite these challenges, many siblings describe their experiences as deeply meaningful. Growing up alongside a sibling with FASD often fosters empathy, resilience, patience, and strong problem-solving skills. Many also become lifelong advocates, supporting their sibling while helping raise awareness about FASD within their communities and professions.
The issue paper calls for greater recognition of siblings in research, policy, and family-centred services. Providing education, counselling, peer support, and respite for families can improve outcomes for everyone, not just the individual with FASD.
In the media
The importance of this work has also been recognized beyond the research community. In a recent Kingston Whig-Standard news story, lead author Madeline Mantler and CanFASD’s Celisse Bibr discussed why siblings are a vital yet often overlooked part of the family system. Madeline, who is also the sibling of an individual with FASD, shared how her own experiences inspired the research while emphasizing the paper’s balanced focus on both the challenges and strengths of growing up alongside a sibling with FASD.
Recognizing siblings’ experiences helps build stronger families and ensures they receive the support they deserve. As awareness of FASD continues to grow, including siblings in conversations about care and support is an essential step toward creating more inclusive, family-centred services. We encourage you to read the full issue paper to learn more.