By Evan Farrar and Mary K. Ziccardi
Challenging behaviors are a feature of Prader-Willi
syndrome (PWS). When responding to these behaviors, it is
important to remember that negative consequences (which
include responses such as shaming, threatening to take things
away, etc.) are not typically effective in helping a person with
PWS to manage their behavior more appropriately. The
cognitive and impulse control deficits caused by PWS inhibit
the ability to understand what a negative consequence is
trying to teach so it does not alter future behavior. Most often
it leads to a power struggle which rarely helps to improve a
challenging behavior. So what does work?
People with PWS are successful behaviorally when a
positive behavioral strategy is developed and consistently
employed. This is a tried and true strategy that is effective for
people with PWS of all ages.
A positive behavioral strategy uses incentives and
rewards to move a person successfully through the day by
mixing preferred and non-preferred activities. For example:
If Tommy, who has had a problem getting up
and ready for school in the morning, is able to
accomplish this task in the designated half-hour time
period he will receive a sticker. If he earns 10 stickers
during the week, he will be able to pick a movie he
wants to watch.
In this example, Tommy’s desire to watch a movie
of his choice is used to motivate him to successfully
accomplish a non-preferred activity – getting ready
for school on time.
How to get started?
1. Create a list of challenging behaviors–the
behaviors you want your plan to help change.
2. Prioritize the list by identifying one or two
behaviors to be addressed first. Behaviors that
are most disruptive could be at the top of the
list. Or you could start with behaviors that will
improve more quickly so the person begins to
earn rewards and feel successful more quickly,
which can increase ongoing commitment to
3. Create a list of rewards or incentives that
will motivate the person. When possible,
invite the person with PWS to help you create
this list. This creates a good opportunity
also for you o begin to explain the purpose
of the new plan you are creating in a positive way.
4. Create the plan for the initial behaviors you
want to target. As with the example above,
create a strategy for each challenging behavior
that includes the preferred behavior you want
to encourage and how and when the reward
will be applied to motivate the behavioral
change you want to help create. Pay attention
to how often the reward is applied. For some
people a weekly reward works well, but for
others the positive reinforcement might need
to be daily or even hourly. Find what works
for the person you are supporting!
Tip: Before beginning step three, do some research.
You can find many helpful resources on positive behavioral
strategies by searching online. If you are working with a
counselor, social worker, or school professional, they also
might be able to assist you with ideas. And don’t forget to
contact PWSA (USA) for helpful behavioral resources (video
and written) for supporting people with PWS. The more you
know, the better your plan will be!
Once you have a written plan designed, share it with
the person with PWS and others involved in their life so
they understand the expectations of the plan and how it
works, post it where you both can see it every day, and use
it consistently. A good positive behavioral plan is an essential
foundation for diminishing challenging behaviors experienced
by a person with PWS. ■
Production, printing, and mailing of this newsletter
was underwritten by a generous grant from
Eastside High School student-sponsored
“Spirit Week” Fundraiser in Greenville, South Carolina