Mothers’ perspectives on challenging behaviours in their children with fragile X syndrome

ABSTRACT

Background

Individuals with intellectual and developmental disabilities are more likely to engage in problem behaviours than peers with typical development. The purpose of this study was to provide descriptive and qualitative information about problem behaviours in children with fragile X syndrome (FXS) and how families respond to these behaviours.

Method

We examined interview responses from 53 mothers of 9-year-old children with FXS.

Results

Defiance, tantrums, inattention, stereotypy, and aggression were the most frequently reported problem behaviours of children with FXS. Stereotypy, physical aggression, self-injury, and elopement were reported more often by mothers of children with dual diagnoses of FXS and autism than by mothers of children with a single diagnosis of FXS.

Conclusions

Results indicated that for many families, by 9 years of age, problem behaviours led to frustration and altered family activities.

KEYWORDS:

• Fragile X syndrome
• autism spectrum disorders
• problem behaviour

Acknowledgments

We want to thank the families who shared their stories with us and made this work possible. We also want to thank the student coders for their work on this project.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by the National Institute of Child Health and Human Development (NICHD) [R01 HD084563] (PIs Warren & Brady) and [HD P30-HD003110] (PI Bailey).