Toilet Training in FXS

Toilet Training in Fragile X Syndrome.

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Summary: Toilet training issues can be burdensome and a significant problem for families with children affected by Fragile X Syndrome (FXS). This groundbreaking study utilized FORWARD data on 633 individuals with FXS to fill the gap for much needed information on when children with FXS learn bladder and bowel toileting skills. By characterizing toileting milestones in children with FXS, this study helps to shed light on the factors causing delays in toilet training.

Language, behavioral irritability and autism spectrum diagnoses (ASD) presented as the main factors in predicting bowel and bladder training delays. ASD diagnosis and gender had a strong impact on age of toilet training. Males and individuals with a co-diagnosis of ASD showed a significant delay in learning toilet training skills. By 5 years of age, almost 100% of females achieve bladder toilet training versus 70% of females with a co-diagnosis of ASD. In comparison, about 50% of males with FXS alone achieved bladder training by age 5 and over 90% achieved toilet training by age 10, while 35% of males with a co-diagnosis of ASD achieved bowel toilet training by age 5 and about 60% by age 10. Across all the groups in a multi-variate analysis, more impaired language/communication was the single most important predictor of the length of toileting delay.

Why this is important: This important study will allow practitioners to inform families about the typical toilet training process and what to expect with toilet training efforts in a thoughtful, informed and encouraging manner. These findings will help providers develop and evaluate specifically targeted toilet training approaches based on gender, ASD diagnosis and other clinical features identified in this study.

What are the next steps: The data presented in this report will serve as an important reference for evaluating the effectiveness of new toileting interventions in future research.

Age is shown on the horizontal line at the bottom of the graph. This is plotted against the proportion of individuals toilet trained at a given age (eg. 0.6 would mean 6 of 10 or 60% of individuals are trained).

Berry-Kravis, E. (2019). Toilet Training in Fragile X Syndrome. Journal of Developmental & Behavioral Pediatrics. 40(9), 751-761.