What FASD is from a research perspective

Fetal alcohol spectrum disorder (FASD) means a lot of different things to a lot of different people. You’ve heard what FASD is from both individual and caregiver perspectives. Now we’d like to share what FASD is from a research perspective. 

The definition of FASD

Historically, FASD was hard to define because researchers and clinicians were learning new information about this disorder every day. In 2019, researchers published a common definition of FASD to use in the Canadian context.

Fetal Alcohol Spectrum Disorder (FASD) is a diagnostic term used to describe impacts on the brain and body of individuals prenatally exposed to alcohol. FASD is a lifelong disability. Individuals with FASD will experience some degree of challenges in their daily living, and need support with motor skills, physical health, learning, memory, attention, communication, emotional regulation, and social skills to reach their full potential. Each individual with FASD is unique and has areas of both strengths and challenges.

This definition helps us understand what FASD is. But it can be a little complicated to understand all at once. So, let’s break this down.

FASD is a diagnosis

FASD is a diagnostic term. It is both an etiologic diagnosis, meaning it identifies the cause, and a functional diagnosis, meaning it identifies the consequences. In this case, FASD refers to the wide range of impacts that can happen to people who were exposed to alcohol during fetal development. Diagnoses like fetal alcohol syndrome (FAS) fall under the realm of FASD.

In 2015, the Canadian guideline for diagnosing FASD was updated. People going through the assessment and diagnostic process now fall into one of four categories: (1) FASD with sentinel facial features(2) FASD without sentinel facial features(3) at risk for neurodevelopmental disorder and FASD associated with prenatal alcohol exposure; and (4) no diagnosis

FASD is a disability

Disability” itself is very challenging to define because it is such a complex and broad topic. A disability can be permanent, temporary, or happen periodically. People can be born with a disability or they can happen at some point in a person’s life. Some disabilities can improve, while others can worsen or remain the same. Disabilities can range from very mild to very severe. They can cause disease, illness, injury, or substance use challenges, but can also be the result of those factors.

According to the Government of Canada, from a biomedical approach, “a disability is a medical or health problem that prevents or reduces someone’s ability to participate fully in society.” From a social standpoint, a disability is “natural part of society, where attitudes, stigma and prejudices present barriers to people with disabilities, and prevent or hinder their participation in mainstream society.”

The most widely accepted definition of what a disability is comes from the World Health Organization (WHO):

Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.

FASD is a lifelong disability. People with FASD experience impairments, activity limitations, and participation restrictions. There is no cure for FASD, but early and effective interventions and treatments can help people with FASD succeed.   

FASD is a spectrum disorder

Each person with FASD is unique and will have different strengths and challenges. There are a broad range of impacts that can occur because of prenatal exposure to alcohol. These impacts occur on a spectrum, so the severity and type of impacts are different for each individual. 

Commonly, people with FASD experience challenges with motor skills, physical health, learning, memory, attention, communication, emotional regulation, and social skills. People with FASD are also known to be friendly, likeable, helpful, generous, outgoing, hardworking, non-judgemental, and creative.

FASD is Canada’s leading developmental disability

In Canada, it is estimated that 4% of people have FASD. That’s more than the number of people with autism spectrum disorder, cerebral palsy, and Down syndrome combined, making FASD the leading developmental disability in North America. What’s more, the prevalence rates are much higher in certain populations, such as children in care and individuals involved in the justice system.

A public definition of FASD

Hopefully this breakdown helps to give you a better understanding of fetal alcohol spectrum disorder (FASD). To simplify things, researchers, caregivers, and FASD experts worked together to create a shorter, more accessible definition of FASD. This is a great definition to use when you want to explain what FASD is to your friends or family members.

FASD lifelong disability that affects the brain and body of people who were exposed to alcohol in the womb. Each person with FASD has both strengths and challenges and will need special supports to help them succeed with many different parts of their daily lives.