Improving prognostication for individuals with FOXP1 syndrome: Parent-reported practical and social skills in 52 individuals

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Improving prognostication for individuals with FOXP1 syndrome: Parent-reported practical and social skills in 52 individuals

Published December 2025

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Adaptive Behavior Adults Daily Living Skills Parent-Reported Prognosis

Plain-Language Summary

52 parents surveyed about practical and social skill development in FOXP1 syndrome across the lifespan.

Parent-reported practical and social skills in 52 individuals with FOXP1 syndrome. Parents of children and adults with FOXP1 syndrome often feel they lack information about how their child will develop daily life skills. This study aimed to fill that gap.

52 parents completed an online survey about their child with FOXP1 syndrome, aged between 2 and 54 years.

What did we find?

People with FOXP1 syndrome have significant challenges with everyday tasks like dressing, preparing food, or traveling alone.
They keep learning new skills throughout life, even as adults.
Most individuals with FOXP1 syndrome learn some basic tasks, such as brushing teeth or feeding themselves.
Almost all individuals can be understood by family members.
Bladder control remains a point of concern, in some cases right through till adulthood.
Many adults with FOXP1 syndrome learn to perform several practical ADLs independently.
Many individuals with FOXP1 syndrome need lifelong, round-the-clock support from their parents.

Published

Published December 2025

Authors

Saskia Koene, Marieke Rothuizen-Lindenschot, Fabienne G. Ropers, Gijs W.E. Santen, Ruth Braden, Angela Morgan, Jannelien Wieland, Helma B.M. van Gameren-Oosterom

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