As parents and caregivers of children with 3q29 deletion syndrome can tell you, receiving a diagnosis answers some questions but brings up many more. 

One of those questions is, “will my child be able to live independently one day?”

First, what does “independent living” mean, anyway? And why is it a question for parents of children with 3q29 deletion syndrome? 

Here, we’ll talk about what defines independent living, what makes it challenging for some adults with 3q29 deletion syndrome, and what could be done to help.

What Does “Independent Living” Mean?

To answer the question of whether or not folks with 3q29 deletion syndrome (we’ll call it 3q29 for short) can live “independently”, we have to define what that means in the context of this diagnosis.

Humans are social creatures who thrive in a community setting. There are family units, neighborhoods, congregations, teams, online communities, and “work families”, for example. 

So except for those who live off the grid, do any of us truly live “independently”? Who doesn’t need a little help or support from time to time? Don’t most of us live interdependently?

To help answer the question, The Center for Disability Rights offers this perspective (x):

Being independent, by definition, means being self-reliant, not solo. Can you successfully navigate your community and use its resources to participate in all aspects of community life? Can you make your own choices about where you live, with whom you live, and how you live? It is by these factors that we should define independence.

Independence vs Interdependence

So what’s the difference between independence and interdependence?

“Independent” means to live with as much freedom as possible and limit one’s need for help from others. “Interdependence” is about balanced support, where people help meet each other’s needs through a collaborative effort that works well for everyone involved. 

Here is another way to think about it…

Independent living, even if it means being part of an interdependent arrangement, involves:

Self-Sufficiency

A person can manage (or work towards managing) most aspects of daily life on their own. Support may be available, but it is supplementary and often optional, with the individual making most choices on their own.

Personal Autonomy

Independent living emphasizes personal freedom and control, especially in a community or environment where some supports may be in place but are not essential to daily functioning. For example, senior independent living communities provide activities and conveniences but are set up for residents who can handle their own daily needs.

Choice of Assistance

People living independently may still ask for or hire help, but it's usually on their terms. The intent is to be as self-reliant as possible within a supportive setting.

“Independent living is not doing everything by yourself; rather, it is being in control of how things are done.” - Judy Heumann

How Can 3q29 Deletion Syndrome Affect Independent Living?

Independent living requires certain skills. Usually, these come naturally over time during childhood and into adulthood. Kids learn by watching, doing, and trial-and-error until they’re eventually ready to take on more complex tasks.

This is called “adaptive behavior”. Adaptive behavior refers to how well someone can carry out age-appropriate, everyday tasks on their own.

Examples of adaptive behaviors include talking to others, shopping, cleaning, budgeting, grooming, following directions, and completing tasks on time.

Why is this important to know when talking about 3q29?

It turns out that people with 3q29 deletion syndrome don’t seem to develop these skills in the same way as those without 3q29, according to a study published in 2023.

The study found that on average, participants with 3q29 had more difficulty in areas of communication, socialization, daily living skills, and motor skills than the general population.

However, the results were highly variable (meaning skill levels were so different among the participants). For example, a participant may have performed better than the general population in the area of motor skills but lower in the area of written communication.

Despite the variability in performance, the study strongly suggests that the adaptive skills needed for daily independent living may be underdeveloped among people with 3q29, making it harder to live without at least some degree of support.

Notably, the study found that when it comes to 3q29, it isn’t someone’s cognitive ability that predicts their adaptive abilities. Instead, executive functioning (such as problem solving and goal setting) seems to be the biggest determinant.

There is a big overlap between executive functioning and independent living. One publication describes it like this:

The ability to plan efficiently, organize, problem solve, initiate activities, and manage behaviors influence an individual’s ability to interact with the world and live independently. Because independent living involves a number of domains (e.g., personal upkeep, management of home and transportation, social skills, community skills), it draws upon a variety of cognitive processes, specifically executive function to approach each task. (x)

You can read more about the study on adaptive behaviors here.

Promoting Independence in Young People With 3q29

How can parents or caregivers best support their young people with 3q29 so they can live as independently as possible?

Well, we know early intervention helps kids bridge developmental gaps in areas like communication, social skills, motor skills, and communication. These are all of the skills needed to function independently, so identifying and addressing these delays early can bolster independence down the road. 

Executive function coaching for teens and young adults might also be helpful, since now we know that executive function is a big factor in whether or not someone can navigate daily life on their own.

There’s a lot a parent or caregiver can do to support a young person with 3q29. As we know, though, everyone (with or without 3q29!) is different and even with all the interventions, we can never predict the future.

IMPORTANT NOTE—Sometimes the transition to young adulthood may be more stressful for someone with 3q29 than it is for another young person. Some parents and caregivers in the 3q29 community have shared that while their children seemed ready for “the next step”, it was ultimately too overwhelming and led to significant emotional distress.

Is it possible for people with 3q29 to live independently? In theory, yes. However, many do not. As research continues and our community grows and shares stories, a clearer picture might emerge. 

As far as we know, the path to independent living for young people with 3q29 may require a longer runway or additional supports compared to the general population.

And—there may even be a need families to redefine for themselves (as other young people and disability advocates have already done) what “independence” means for them.

About the 3q29 Foundation

The 3q29 Foundation’s mission is to create paths to treatments for 3q29 syndromes through funding research, community-building, and increasing access to information and resources. Find out more at 3q29.org!

For more research findings, head to our Research page with summaries and links to papers published by leading 3q29 researchers. 

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