Updated: Apr 3, 2019
This is Part 2 of a series of reports about Colin Reilly’s 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.
What approaches do people find effective for teaching children to read?
For the children with Fragile X who could recognise some words, parents and teachers were asked what the teaching approach was that they felt had been the most effective for helping them to learn. The two main approaches to learning to read are:
Phonics based approach: learning to read by learning to piece together words by letters and their sounds
Sight words: learning to recognise individual words as a whole.
Both parents and teachers most commonly said that they had used a sight word approach to help the child learn to recognise words. This was different to the other syndrome groups which were researched, where the phonics approach was rated as being more effective.
*Other Approach included combinations of approaches (e.g., sight and phonics)
Educational Strategies for Working with Children with Fragile X
There are a number of published guidelines (for example, the Fragile X Society’s guide) which have been written based upon clinicians’ (who have expertise in working with people with Fragile X) experiences of strategies that are particularly helpful for this group, and based on research into the cognitive styles of people with Fragile X. The main recommended teaching strategies include:
“Side-on teaching”: sitting side-by side-during teaching, to reduce eye contact and social anxiety which could be counterproductive during learning.
Presenting tasks as a whole, rather than breaking them down step-by-step (due to children with FXS being better at processing things simultaneously, and difficulty with linking things together in a sequence)
Presenting materials visually
Avoid direct questions
Both parents and teachers were asked (via an open question) which strategies they had heard of which were most effective for working with children with Fragile X.
The top strategies that parents identified were:
In contrast, the top strategies that teachers were aware of were:
The ‘Side-on Teaching’ approach was mentioned by only 5% of teachers of children with fragile X syndrome whereas it had been mentioned by 29% of parents of children with the syndrome (it was mentioned by no parents for the other syndrome groups).
The need to avoid direct questioning in children with fragile X syndrome and the relative strength in simultaneous processing has been suggested by a number of authors. However, these were rarely referred to by parents or teachers in this study. It would appear that parents and teachers are not often aware of the more specific syndrome specific guidelines which reflect more subtle aspects of a syndrome’s cognitive and behavioural profile. Therefore, there may be a need for awareness raising on the more specific aspects of the learning and behavioural profile in fragile X.
What do teachers feel are the most effective approaches for working with children with Fragile X?
Teachers were asked, via an open question, which teaching approaches had been effective when working with their pupils who had Fragile X Syndrome. The teachers’ responses were then analysed to see which strategies they had spontaneously mentioned. The top three strategies which teachers said that they found to be effective were:
One third of the teachers found using routine and structure useful
A quarter of teachers found it that children learned by “doing” (Experiential learning)
A quarter of teachers found it useful to using visual approaches
Interestingly, the need for ‘side on teaching’, an approach specifically recommended for fragile X syndrome was not mentioned at all by teachers when asked what works best. This is somewhat surprising given the emphasis on this in published guidelines. Therefore, there is some evidence that what is emphasised in published guidelines for the syndromes is not always reflected in actual practice. There are a number of possible reasons for this, including the possibility that some of the guidelines are not useful, or at least not useful with all of the children with the syndrome. Another possibility is the teachers are not using the most effective approaches and should be adhering more closely to the published guidelines.
Educational Strengths and Needs
What do parents and teachers feel are the educational strengths of children with Fragile X?
The top areas where people rated that the children with Fragile X had educational strengths were:
Using computers and IT: 75% of parents and 52% of teachers
Music: 52% of parents and 22% of teachers
Sports and Physical Education: 33% of parents and 25% of teachers
Reading: 32% of parents and 39% of teachers
What do parents and teachers feel are the areas where children with Fragile X have greater learning challenges?
The top areas that were rated as being areas of greater need in teaching were:
Maths: 83% of parents and 51% of teachers
Handwriting: 75% of parents and 61% of teachers
Spelling: 67% of parents and 46% of teachers
Reading: 51% of parents and 46% of teachers.
Interestingly, 80% of teachers felt that the needs of children with Fragile X were similar to other children with learning disabilities but many (70%) also rated that children with Fragile X had very complex needs and needed very specific supports.
Do people feel that children with Fragile X learn best when being taught one-to-one, or in a group?
Both parents (56%) and teachers (62%) most commonly rated that the children with Fragile X learned best when they were being taught one to one. Around one third of parents (33%) and teachers (39%) felt that the best set-up for learning was when the child was being taught in a small group with an adult. Very few parents (2%) and no teachers felt that children with Fragile X learned best in a “whole class” format.
How many children have a statement of Special Educational Needs in the UK?
The vast majority (90%) of children were reported to have a SEN statement, which entitles them to additional support in the education system.
What are the areas being targeted in children’s education?
An Individual Education Plan (IEP) is a teaching and learning plan created for an individual child, and should reflect the key areas where parents and teachers feel that a child needs support. Parents and teacher were asked what was included in the child’s IEP. The most commonly rated areas which were being targeted in children’s education were maths, social skills, communication and independence skills.
School-Based Behavioural Issues
Teachers were asked about school-based aggression issues. 42% of teachers said that their pupil with Fragile X regularly or occasionally engaged in verbal aggression and 31% said they engaged in physical aggression. Parents were asked how well that they felt that the teachers could identify the cause of and manage this behaviour: 81% said that the teachers could but 11% said that they could not.
This is Part 2 of a series of reports about Colin Reilly’s Research. Next week we will post about the impact of Fragile X on the family.
The researchers and the Fragile X Society thank all those who took part in this research.