Written by Laura Bousquet 

A parent, self-advocate, and part of the FASD United team, Laura responds to proposed changes to FASD diagnosis recently published in The Lancet Child & Adolescent Health.

Upon reading this article, I was struck by a sense of invalidation—of the symptoms, the condition itself, and the profound impact it can have. The article seemed to downplay the significance of the diagnosis, attributing symptoms to other causes and making assumptions about an individual’s capacity, rather than recognizing the need for tailored support and accommodations. For individuals with FASD, who already face stigma, misdiagnosis, and misunderstanding, such invalidation can be particularly damaging. 

It is crucial for professionals—whether in medicine, education, mental health, legal, or employment—to embrace the complexity of FASD, striving to understand and support those impacted by it. Rather than questioning the validity of the diagnosis because it may not fit into familiar frameworks, we must acknowledge the need for greater awareness and understanding. Dismissing FASD does not foster progress; professionals should seek education and engagement to bring about the systemic changes necessary for those affected by this condition. 

I wonder whether the perspectives of individuals with lived FASD experience were considered in shaping the article. Were their voices heard, their challenges understood? Their inclusion is essential to create solutions that work for everyone. 

We often hear the analogy of a “square peg in a round hole,” which effectively highlights the mismatch of forcing individuals into environments that don’t accommodate their needs. Accommodations are like providing the right tools for success. Without them, we’re setting people up for failure. It’s like placing the wrong puzzle piece in a space it doesn’t fit—adjusting the environment to suit individual strengths is key. 

Expecting everyone to conform to a single standard without accounting for differences is like wearing shoes that don’t fit—leading to discomfort, frustration, and missed opportunities. Just as proper accommodations are necessary for individuals with disabilities to thrive, we must ensure that people with FASD receive the support they need to succeed. 

The article’s suggestion that using a medical diagnostic term for FASD may be harmful seems misguided. FASD is a neurodevelopmental disorder with a broad spectrum of challenges. A proper diagnosis provides a path to accurate care, targeted interventions, and improved outcomes. It ensures that health professionals and caregivers recognize the unique needs of those with FASD, leading to better healthcare, educational support, and community resources. 

While adverse childhood experiences (ACEs), genetic factors, and environmental conditions certainly play a role in health outcomes, these do not replace the importance of an accurate diagnosis. A proper diagnosis guides appropriate interventions and ensures that the root cause of a person’s challenges is addressed. It’s not about categorizing or minimizing—it’s about clarity, understanding, and support. 

The accurate identification of FASD is essential across the lifespan. In childhood, it helps shape interventions, educational accommodations, and behavioral support. During adolescence and adulthood, it informs continued interventions, ensuring that individuals receive the proper care, employment support, and life skills development. Throughout life, an accurate diagnosis promotes empathy and a better understanding of each person’s strengths and challenges, improving long-term outcomes for individuals and their communities. 

I understand that some parents may be hesitant to accept an FASD diagnosis due to the stigma attached, but this highlights the need for more open conversations, especially during childbearing years. Supporting life-giving parents as they navigate caregiving is just as important as addressing the needs of individuals with FASD. 

Finally, we must ask ourselves: why is the social acceptance of a medical diagnosis even a question? Some individuals may have both FASD and autism, yet FASD often goes unrecognized due to a lack of education and, in some cases, funding incentives tied to autism. It’s not about comparing conditions—it’s about understanding that each diagnosis requires specific recognition and support. To dismiss FASD for the sake of convenience or an unwillingness to make systemic changes would be harmful. 

Ultimately, professionals must receive more training and education on FASD. Despite the unique challenges it presents, it is crucial that FASD remains a recognized medical condition. This ensures that those affected by it are provided with the necessary support, empathy, and resources to thrive. 

Laura Bousquet joined the FASD United Family Navigation team from her home state of Texas in November of 2022.