The FASD Experience - FASD United

The best way to understand FASD is through the perspectives and abilities of individuals with living experience.

Myth

Fact

FASD is strictly a maternal-child health issue.

FASD affects everyone. 1 in 20 people live with this non-apparent disability and many are not receiving the support they need.

Individuals with FASD need to “look” a certain way to find validity in their disability.

Only around 10% of those diagnosed with FASD have the associated facial features. Assuming a person should look like their disability is stigmatizing.

All individuals living with FASD act and think the same.

FASD is a spectrum disorder, not a sliding scale, and those living with it experience things uniquely.

Individuals with FASD are prone to run-ins with the criminal justice system.

People with FASD are often likely to be victims of crime rather than perpetrators of one. There are many complexities behind this myth.

People with FASD are just “picky” or “too sensitive.”

Sensory processing sensitivities are common in those diagnosed with FASD.

The responsibility of FASD falls on birth mothers.

Many people drink prior to recognition of pregnancy, experience unplanned pregnancies, or live with Alcohol Use Disorder (AUD) or Substance Use Disorder (SUD). The responsibility of addressing FASD falls onto all of us as a society.

Get Involved and Learn More About the FASD Living Experience…

Youtube Channel

Glimpses of FASD

FASD United Interviews

Quotes from FASD Self-Advocates:

“Some people will just see someone as their disability and not as who they actually are. It’s like the saying don’t judge a book by its cover; don’t judge someone by their disability either.”
-Marlee

“The strategies I’ve developed to make myself a successful adult all came out of recognizing that it wasn’t my brain being lazy but not processing correctly.”
-Stephen

“Get a formal diagnosis as soon as you can… Make sure the school knows what the diagnosis means and educate everybody.” Stories like Elizabeth’s can help people understand some of the issues caused by FASD, and how important prevention is as well as support services for those with FASD.”
-Elizabeth

“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?”
-Kenny

“Talking prevention is great, but we need to give resources for people with FASD to get help, and give those statistics along with prevention.”
-Rebecca

“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.”
-Landon

“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.”
-Brenna

“Receiving a proper, accurate diagnosis is the first step in self-advocacy, as it allows individuals to understand their strengths and challenges. This awareness helps them identify and access appropriate supports for success.”
-Laura