The Impact of Fragile X Syndrome on the Family

Updated: Apr 3, 2019


Author: Colin Reilly

Summary Edited by: Becky Hardiman


About the survey

This parent and teacher survey focussed on aspects of educational provision, social functioning and family support needs for children with four genetic syndromes (fragile X syndrome Prader-Willi Syndrome, Williams Syndrome and Velo-Cardio-Facial Syndrome (also known as 22qdeletion syndrome)) and was carried out in the UK and Ireland in 2011.

This is one of the largest studies to date to feature the views of parents and teachers of children with fragile X syndrome in relation to educational provision. In total, 381 parents (115 parents of children with fragile X syndrome (94 male and 21 female children)) and 204 teachers (59 teachers of children with fragile X syndrome (46 male and 13 female)) returned surveys. In the fragile X syndrome group, 101 of the parent responses were from the UK and 14 from Ireland while in the teacher group 49 teachers were from the UK and 10 from Ireland.

To read the full report, click here.

In the last part of the survey, parents were asked about their experiences and the impacts of raising a child with Fragile X.

The benefits of raising a child with Fragile X

95% of the parents discussed positive aspects of raising their child which were wide-ranging and included:


The fact that almost all parents reported at least one positive aspect emphasises the importance of genetic counsellors providing information on potential positive aspects of the syndrome and providing a balanced view of the impact of the syndrome on family functioning.

Challenges of raising a child with Fragile X

The parents who completed the survey were asked what the challenges were associated with raising their child. 99% of the parents rated that there was at least one challenging aspect of supporting their child. The most common reported challenges were:

  • Child’s difficulties with social skills (77% of parents)

  • Child’s learning difficulty (71% of parents)

  • Child’s anxiety (62% of parents)

  • Child’s communication difficulty (59% of parents)

  • Child’s obsessions (50% of parents)

Other challenges reported included: aggression, sleep difficulties, excessive activity levels and family non-acceptance.

Parents were also asked about the restrictions that bringing up their child had on their lives. The most common restrictions were going shopping (62% of parents), taking holidays (46%) and taking public transport (40%).

Parents’ Needs

Parents were given a list of areas where they wanted support and were asked to rate how much they would like support in each area. The top 5 areas where parents wanted support were:

  • To get support finding out about future educational options for their child

  • To understand about future services their child might receive

  • To understand the future needs of their child

  • To help their child understand and use money

  • To understand how to teach my child.

Therefore, the main areas where parents want support is in preparing for the future.

If you need support in any of these areas, please do contact us at the Fragile X Society (info@fragilex.org.uk; 01371 875100)

Relationships between siblings

Out of those families to which this question applied, over 70% of parents felt that the relationship between their children with and without fragile X were positive or very positive. A quarter said that the relationship was variable. Only a very small number (1%) said that the relationship was “very negative”.

Adjustment at Home and School

Parents were asked if they felt their child was aware that they had fragile X syndrome. In total 34 children (30%) (22 of the males (24%) and 12 females (57%)) were reportedly aware that they had the syndrome.

Bullying

Parents were asked whether they felt that their child was bullied more than other children. Though the majority of parents did not feel that their child was bullied more, it was concerning that just under a third of parents of boys (27%) and over a third of parents of girls (38%) felt that their child was a victim of increased bullying. However, out of the four syndrome groups in this study, the children with fragile X had the lowest levels of reported bullying.

The most common type of bullying for both boys and girls was verbal, though physical bullying was also reported.

These reports are concerning and highlight the need for further education for others to promote understanding and acceptance, as well as support for those children experiencing bullying.

Summary

If any of these issues have affected you and you would like support, or if you would like to share your experiences, then please do get in touch: you can call us on 01371875100 or email info@fragilex.org.uk

Thank you from the researchers and the Fragile X Society to all those who took part in this survey.

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