When the System Feels Impossible: Supporting Adults with FASD and Intellectual Disabilities

Image of a man with intellectual/developmental disability outdoors for a walk taking a selfie with a support staff person next to him. They are both wearing light jackets and smiling at the camera

The person in front of you has not had a bad day. They have had a brain that works differently every single day and most of the systems designed to support them were not built with that in mind.

Navigating the world as an adult with Fetal Alcohol Spectrum Disorder (FASD) and Intellectual Disabilities (ID) often feels like trying to run a marathon through deep water. The world is fast, loud, and built on abstract expectations that don’t always align with how their brains are wired.

For caregivers, social workers, and medical professionals, the “system” can feel equally daunting. The work can be demanding, the rewards are often invisible, and the guidance can feel thin. This is in large part to our lack of knowledge about the disorder and misunderstanding of their needs.

Photo of a young man holding his head, closing, his eyes, with open mouth like he is overwhelmed. The background is distorted like it is zooming by too fast.

What is FASD?

FASD is a lifelong condition caused by prenatal alcohol exposure. FASD is caused when alcohol interferes with the fetus’ ability to receive sufficient oxygen and nourishment for brain and body development. The effects of insufficient oxygen to the fetus can impair them physically, mentally, and behaviorally throughout a person’s lifetime.

When intellectual disabilities are also present, these deficits compound. What looks like resistance is often slow processing. What reads as non-compliance is a genuine inability to know what comes next or recall a task. This distinction matters because how support staff interpret the behavior directly shapes how they respond, and those responses either build safety or erode it.

Photo of an expectant woman holding a wine glass near her exposed, bulbous, pregnant belly

Challenges

For many adults living with FASD and ID, challenging behaviors are rarely acts of defiance. Instead, they are symptoms of a brain that processes information differently. Let’s look at the behavioral issues, learning challenges, and physical problems a person with FASD and ID might exhibit.

Behavioral Issues:

Hyperactivity
Poor impulse control
Poor reasoning and judgment skills
Difficulty with attention
Difficulty regulating emotions
Easily peer pressured
Sensory concerns (tend to get overwhelmed easily)
Difficulty taking responsibility for their actions

Learning Challenges:

Poor memory
Learning disabilities
Speech and language delays
Intellectual disabilities or low IQ
Difficulty in school (especially with math – which leads to issues understanding and handling money)

Physical Problems:

Poor coordination
Shorter than average height
Vision or hearing problems
Small head size
Lower than average weight
Sleep concerns
Abnormal facial features (smooth ridge between the nose and upper lip)
Rapid, uncontrollable eye movements
Issues with heart, kidneys, or bones
Easily fatigued

Many adults with FASD and ID appear to be functioning at a higher capacity, when in fact, it is quite the opposite. While they may present as age-appropriate in physical maturity, reading ability, and expressive language, their functional developmental age lags significantly. Comprehension, money and time concepts, emotional maturity, and social skills typically fall between the ages of 6 and 8 years old.

Image of a woman looking perplexed or despondent at $5 dollar bill in her hand, her other fist is pushed into her curls like she is frustrated thinking. The background shows a clock with a lot of question marks covering the entire background

Support

It’s important to change the environment, not the person you are supporting. People with FASD have permanent brain damage. What seems to work best is finding a common interest the person has and base everything off of that. I’ve learned that if you want a person with FASD to follow the rules, you must make it interesting!

Here is a list of some other creative interventions and supports:

Because people with FASD have trouble with generalization, you should go over expectations for each environment before they enter.
Make everything person-centered to match their needs and strengths.
Teach them about boundaries.
Break down tasks when possible (no more than two steps at a time).
Give choices when possible so the person feels they have control.
Positively reinforce frequently (token economies do not work).
List and schedules work wonderfully.
Heavily rely on visual cues and social stories.
Create a sleep-friendly environment.
Teach personal responsibility. However, we must be cognizant to remind them without blaming them.
Modeling tasks can be helpful.
Motivation is key to lessening depression in people with FASD.
Consistency in routines is a must.
If the person continually asks repetitive questions, answer them. Short term memory issues are at play.

Okay, so that was a lot. Just know that people with FASD can accomplish many things with proper support. When the system feels impossible, you are the translator between a world that doesn’t always understand and a brain that is doing its absolute best to keep up. Advocacy is exhausting, but for an adult with FASD and ID, a dedicated team is the difference between falling through the cracks and finding a place to belong. Which is what we all want and deserve.

Visit www.FASDUnited.org to get more information and support for family and caregivers!