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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’s school.

Teachers were also asked if they had discussed the diagnosis with the parents before they started working with the child. Only 54% had done so, which was lower than the proportion of parents who had said that they had discussed it. The percentage is lower in the teacher sample due to fact that current class teacher may not have discussed fragile X but a previous teacher may have done so.

What were the teacher’s reactions to being told about the diagnosis?

Parents were also asked about the reaction of school staff if they did inform them of their child’s diagnosis. The vast majority (85 of 92: 92%) of parents said it was ‘positive’. However, some parents reported less positive experiences: 3 said staff were ‘not interested’ and 4 said they got a ‘negative reaction’.

How much did the teachers know about Fragile X?

Teachers were asked whether they had been told about Fragile X during their training. Only 29% said that Fragile X had been mentioned in their training, though this was higher than the other syndromes surveyed.

Parents were also asked about whether they felt that the teachers had known anything about Fragile X when their child started at the school:

Table 3: Parental Opinion of Teacher/SENCO’s Alleged Knowledge of Fragile X

There was a higher level of reported knowledge in special as opposed to mainstream schools.

Parents were also asked about whether they felt that the current school staff were knowledgeable about Fragile X, only just over half (56%) agreed and under a third of parents (28%) felt that their child’s current teacher wasn’t knowledgeable about Fragile X. The remaining parents didn’t know how much the current teacher knew.

The teachers were also asked how much they felt that they knew about Fragile X. Sadly, just over half of teachers in the mainstream schools (55%) and the majority (70%) felt that they had limited or no knowledge of Fragile X.

Where do teachers go to find out about Fragile X?

The most common places where teachers went to get information about Fragile X were the child’s family and the Internet. They said the most useful place to get information was online.

What do teachers want more training in about Fragile X?

What do teachers want more training in about Fragile X?

Unfortunately, the majority (67%) of teachers felt that they were given enough resources to teach a child with Fragile X. Many teachers said that they would like more training about Fragile X and the main areas where they wanted support were: behavioural aspects (53%), cognitive aspects (63%) and teaching strategies (46%)


Children with Fragile X in the UK and Ireland are attending a variety of mainstream and special educational schools and, on the whole, parents and teachers rate the current educational provision positively.

However, even though more teachers of children with fragile X had received training in fragile X than teachers in the other three syndrome groups, only 29% had received formal input and this is concerning. This lack of training is likely to have significant implications on teachers’ views on the importance of the child’s syndrome to education planning and subsequent classroom practices. If teachers have not received any input on fragile X syndrome, it is more likely that they will not feel that the child’s syndrome is important with respect to educational planning. Half of all teachers indicated that they would like further training on the syndrome, indicating that many feel they lack the necessary knowledge and skills to meet the children’s needs.

This shows the importance of organisations like the Fragile X Society reaching out and working with schools and teacher training organisations to ensure that teachers have an awareness of the importance of genetic conditions: not just as a label but as a source of information which can then be translated into strategies to best help support that individual pupil.

This is Part 1 of a series of reports about Colin Reilly’s Research. Next week we will cover findings such as the strategies teachers are using with children with Fragile X in the classroom.

The researchers and the Fragile X Society thank all those who took part in this research.

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