Research into behavior and learning in PWS continues to provide valuable insights into how individuals with PWS experience the world and how caregivers can better support them. Two research studies explore important aspects of how individuals with PWS manage routine, cope with change, and learn new skills.
Together, these findings highlight strategies that may help individuals with PWS build coping skills and learn more effectively.
Why Routine and Task Switching Matter in PWS
The first paper is the work of FPWR-grant recipient, Dr. Kate Woodcock. Dr. Woodcock’s research focuses on better defining problematic PWS behaviors and understanding their underlying causes. Importantly, she has taken on the challenge of using that information to develop interventions to minimize the challenging behaviors and improve coping skills. Much of her work has focused on temper outbursts in PWS and on the genetic, neural, and environmental factors that contribute to them.
As anyone familiar with PWS knows, routine is very important to a person with PWS. Earlier work from Dr. Woodcock and colleagues (Woodcock, 2010) suggests that this strong preference for routine may be linked to difficulties with task switching—a form of higher-order thinking that allows a person to move from one activity or expectation to another.
Brain imaging studies found that individuals with PWS may have difficulty activating the brain circuits involved in switching tasks. When this ability is limited, the brain can become “stuck,” which may help explain common experiences such as:
- Repetitive questioning
- Distress when expectations change
- Temper outbursts when routines are disrupted
When Routines Become Too Rigid
Many parents and caregivers have received advice to 'make a routine and stay with it' when dealing with their loved one with PWS. This can be a great help at times - if you can get a good routine going, a person with PWS will stay with it like nobody’s business.
While routines can be helpful, research suggests that overly rigid routines may also create challenges.
In the study Increased Exposure to Rigid Routines Can Lead to Increased Challenging Behavior Following Changes to Those Routines, participants with PWS played games that allowed a routine to develop for either a short or longer period of time. Then (brave souls that they are!), the researchers intentionally disrupted that routine.
The results showed that:
- The longer and more rigid the routine,
- The worse the behavioral reaction (longer, more extreme temper outbursts) when the routine was broken.
This finding calls into question the notion that establishing routine is always the best approach in PWS and suggests the need to investigate how our kids might be taught to cope with inevitable changes to routine.
How Individuals with PWS Learn Best
A second area of research has examined how individuals with PWS learn: Learning by observation and learning by doing in Prader-Willi syndrome.
Dr. Francesca Foti compared two different learning approaches:
- Learning by observing someone else perform a task
- Learning by actively performing the task
The learning task was a computer-based spatial task that involved linking together a sequence of blocks.
The findings were striking.
Individuals with PWS had significant difficulty learning the sequence by observation alone. Their performance was lower than that of typically developing children matched for mental age and lower than that of individuals with another genetic disorder, Williams syndrome, who were matched for IQ.
However, when participants learned the task by doing it themselves, their performance improved dramatically. In fact, their scores were comparable to those of typically developing children using this hands-on learning method.
These findings suggest that hands-on learning may be particularly effective for individuals with PWS.
While many teaching methods rely on demonstrating a task first, this research suggests that a different approach may work better:
- Allow the individual to try the task themselves first
- Then provide guidance to refine or improve the task
This approach allows individuals with PWS to learn through direct experience, which appears to align well with their learning strengths.
Moving Toward Better Support Strategies
Together, these studies highlight two important themes for supporting individuals with PWS:
- Helping individuals build flexibility and coping strategies when routines change
- Using hands-on, experiential learning approaches when teaching new skills
As research continues, insights like these will help caregivers, educators, and clinicians develop strategies that support greater independence, learning, and emotional regulation for people with PWS.
