Tip of the week: Executive Functioning

Executive functioning is the set of mental skills that we use to complete a task. We use executive functioning throughout the day to complete both small and large tasks, many times without any thought to the steps involved to get from one place to another. When a person has executive functioning disorder (EFD) these everyday tasks can be extremely difficult.

People with executive functioning disorder (common with a PWS diagnosis) have difficulty organizing and remembering steps and can struggle with following instructions. This can often be misunderstood as non-compliance. Until you are able to teach appropriate reactions to the appropriate situation, be aware that your child is experiencing the stress of someone going through an emergency. In some kids, a problem such as not being able to go on an activity, a change in plans, or losing a toy or item of clothing may result in a reaction that we believe to be “over the top”— but keep in mind that they are truly experiencing this high level of panic.

  • Impulse control is compromised, acting without regard for consequences or over the top reactions are not uncommon. The person with EFD has a difficult time understanding that every emotion does not need to be acted upon in the moment.

  • Sustaining attention is a daily struggle. Concentration can only be sustained in short bursts. Using frequent breaks and a variety of activities is crucial to maintaining attention throughout the day.

  • Problem solving may be the most challenging aspect of EFD because not only do they not understand the specific steps needed to solve a problem, they often cannot correctly determine when something is a problem or not.

  • Due to a lack of planning memory it is important to give short instructions with as few steps as possible. When the child with EFD is experiencing stress it is very difficult for them to recall steps, even while doing something familiar. Have the above “First/Then and First/Next/Then” convenient as an easy reminder for you and your child regarding how steps should be written or verbalized.

Patrice Carroll is Latham Centers’ world-renowned Prader-Willi syndrome specialist. She works with Latham’s residents with PWS, their families, and consultants, continuously learning and teaching about PWS best practices. Do you have questions for our PWS specialist? Submit your “tip” topics or general questions to TipTopics@LathamCenters.org.

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