In the FASD space, prevention messaging undoubtedly plays a crucial role, but focusing solely on prevention can sometimes inadvertently cast a shadow over those living with this disability. Many national leaders acknowledge the importance of prevention and support for those with disabilities; As the Centers for Disease Control and Prevention (CDC) wisely explains, “We know that not all birth defects can be prevented. But, we also know that people can increase their chances of having a healthy baby by managing health conditions and adopting healthy behaviors before becoming pregnant.”

Consider what FASD self-advocate and author Kenny LaJoy has to say. While prevention-based messaging is undoubtedly important, he feels that it shouldn’t be the sole message in the FASD community. As Kenny passionately puts it, “The problem is already here, I’m not saying we should encourage it, of course not, we want to limit it as much as possible… but, you can’t rely on ‘just saying no,’ or solutions that only rely on prevention.” In his words, the narrative must evolve to embrace a broader perspective. 

For individuals living with FASDs, prevention is just one piece of the puzzle. Kenny emphasizes, “Ideally no pregnant person should drink… but we don’t live in an ideal world – so what do we do with the people who are already here, already affected with it and challenged by it… sometimes the message of prevention sidelines the people already affected.” This perspective sheds light on the importance of advocacy and messaging that addresses the needs of those already living with FASDs. 

Rebecca Tillou, an adult with FASD and Run FASD Coach, shares why pairing prevention messaging with resources and statistics creates a more holistic understanding of the issue. She notes, “I have not met one person that drinks to harm their child. I think prevention is key, but it’s in the way we present the information.” Rebecca’s words point out the importance of providing resources and statistics alongside prevention messaging to create a more holistic understanding of the issue. “Talking prevention is great, but we need to give resources for (people with FASD) to get help, and give those statistics along with prevention.” 

It’s vital to recognize that FASD is not something to be feared or stigmatized. “It (FASD) is sometimes preventable, but sometimes people just don’t know that they’re pregnant and they drink…Some people are addicted, and they can’t stop even though they should,” says Brenna French, an advocate for the FASD community. People with FASDs are not inherently ‘bad kids.’ She eloquently emphasizes this point: “They are just trying their best like I tried my best when I was little.” Parents should be assured that their children if they have FASD, are not ‘bad kids.’ Unfortunately, when prevention is the sole message young people with FASD hear as they grow up, it can lead to stigmatizing beliefs that are challenging to change later in life. “I feel like if they’re saying it’s 100% preventable, they’re saying that kids with FASD as people don’t have any aspect of the future,” Landon French, Brenna’s older brother adds, “The older I get, the more self-aware I’ve become. When I was younger, I didn’t have a way to think for myself. Compared to this year, the more I’ve learned about FASD, how others are affected, and what causes it. It’s helped me understand more about myself and what I need to do to prevent any more misunderstandings within myself and for others.”

In their preventative and living experience efforts, the CDC has outlined some important guidance for aiding those born with FASD: “Treatment services for people with FASDs are most effective when they address a person’s specific impairments and build upon his or her own strengths.” Prevention messaging undeniably serves a crucial role in promoting healthier outcomes for pregnant individuals, those considering pregnancy, people with substance use disorders, and medical professionals who may not be well-versed in FASD. However, when prevention dominates the discourse, it can unintentionally impact those living with this disability. We want individuals with FASD to feel appreciated and seen and to de-stigmatize being diagnosed with an FASD. This begins by listening to those living with this neurodiversity and incorporating their invaluable perspectives into our outreach efforts. 

This project is supported by the Centers for Disease Control and Prevention (CDC) of the U.S. Department of Health and Human Services (HHS) as part of a financial assistance award. The contents are those of the authors and do not necessarily represent the official views of, nor an endorsement by, CDC/HHS or the U.S. Government.

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