Are children with Fragile X in the UK/Ireland going to mainstream or special schools?

Part 1 of a Parent and Teacher Survey on Education.

Research 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.

Where are children with Fragile X going to school, in the UK and Ireland?

Overall, a quarter of the parents said that their child was attending a mainstream school, and three quarters in a special education placement. The ratings provided by the teachers were a little different: a fifth (19%) were in a mainstream, compared to 81% in special education.

In the parent and teacher samples, the fragile X syndrome group had the lowest percentage of children attending mainstream schooling compared with the other three syndromes in the study. This is likely to reflect the lower levels of cognitive functioning associated with fragile X syndrome compared with the other syndrome groups.

Over a third (39%) of children with Fragile X were in mainstream between the ages of 4-9, but only 9% of the older children (age 14-19) were in mainstream education. This trend for a move towards special education for older children was also the case in the other syndromes and probably reflects the increasing academic demands as children move through the school system.

The proportion of children with Fragile X in different school settings was also different for boys and girls: more boys were in special education than girls. This reflects the fact that many (though not all) boys show more clear effects of Fragile X than girls.

Table 1 Where are children with Fragile X going to school in the UK/ Ireland?

What type of schools do parents think would best meet their child’s needs?

The majority of parents (83%) said that a specialised placement would best suit their child. There was a substantial number of parents (17%) who felt that mainstream education was most appropriate for their child: this was rated more commonly by parents with primary-school age children.

Teachers were also asked whether or not they felt that children with fragile X syndrome would struggle to reach their potential in mainstream educational settings. 75% agreed that they would struggle and 25% disagreed.

Are children, parents and teachers happy with the current school placement?

The vast majority of parents said that their teacher was happy at school (96%). The majority of parents and teachers also felt that the child was progressing as well as they could at school, though sadly 13% of parents and 11% of teachers didn’t feel that this was the case.

Positively, the relationships between children, staff and schools were rated highly: 93% of parents reported that they had an ‘excellent’ relationship with staff at the child’s school and 94% of parents agreed that their child’s teacher had an ‘excellent’ relationship with the child.

Interestingly, when parents were asked if the UK Irish education had met their child’s needs, only 65% agreed.

Did parents feel that the school was willing to cater for their needs and their child’s needs?

Happily, all of the parents felt that the child’s school was willing to make every effort to meet their child’s needs, with 70% saying that the school was very willing. Almost all (98%) parents also said that the school was willing to listen to their concerns.

Children’s participation in sporting and recreational clubs

Parents were asked whether their child attended any sports clubs, the results were quite mixed:

Fewer boys were accessing mainstream social opportunities.

Communication about the child’s diagnosis

Do parents and teachers talk about the diagnosis of Fragile X?

Parents were asked if they had informed the head teacher/school principal at their child’s school of their child’s diagnosis. Almost all of the parents had told the head teacher about the child’s diagnosis of Fragile X; only 2 of 105 parents of children with fragile X syndrome said they had not.

Parents were also asked if they had discussed their child’s condition with the current class teacher or SENCO (Special Education Needs Coordinator)/resource teacher. Nearly 90% of parents had discussed the child’s condition with a staff member at the child