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Children with Fragile X may be developmentally delayed and experience learning and behavioural difficulties. Fragile X is the second most commonly occurring inherited condition after Down’s syndrome.

Fragile X is an inherited genetic syndrome, which results in learning and behavioural difficulty, associated with Autism.

It gets its name from the discovery of an abnormal ‘fragile’ site on the X chromosome. Fragile X occurs in approximately 1 in 4,000 males and 1 in 8,000 females; its severity is more marked in boys than girls, with intellectual disability varying from mild to severe. Effects are wide-ranging and unpredictable. Fragile X accounts for 2-3 per cent of cases of ASD.

Gross and fine motor skills are often poor. Children may appear ‘floppy' with autistic features eg hand-flapping and poor eye-contact. Attention difficulties are common as well as anxiety and unstable mood.

Physical features ascribed to Fragile X syndrome include a relatively large head, a long face with prominent ears, largish jaw and double-jointedness. However, as these are less marked in young children a Fragile X diagnosis is often missed or delayed. Epilepsy occurs in up to 30 per cent of people with Fragile X syndrome.

Characteristics of Fragile X include: 

  • Learning difficulties: Approximately 80 per cent of boys and a quarter of girls with Fragile X have learning difficulties varying from subtle educational delays to severe intellectual disability.
  • Speech and language problems
  • Challenging behaviour: Girls are usually less affected than boys but have similar attention difficulties and are often extremely shy and socially withdrawn.
  • Emotional factors: Children with Fragile X can be easily overwhelmed, particularly in busy or stressful environments. They may suffer sensory over-stimulation, seemingly overreacting to noises, smells and sounds. They need routine, security and constant reassurance. Emotional difficulties are common even in girls with a normal IQ.
  • Coordination and sensory issues: Fine motor co-ordination problems are common in youngsters with Fragile X but are not usually apparent until later. Over-sensitiveness to sensory stimuli means that people with Fragile X are easily overwhelmed by sights, sounds, smells, tastes and textures – poor eye contact and gaze avoidance may be attempts to avoid excessive stimulation.

Diagnosis is by blood test using DNA analysis. Prenatal diagnosis is also possible.

Things that help - in and out of school

A safe, secure, caring environment is an essential prerequisite to lessening the anxieties experienced.

Intervention should be child-orientated and directed to the needs of the child. Within the context of school these may include:

  • An uncluttered but interesting learning environment.
  • Sticking to routines. Where changes are necessary (holidays, a school trip etc) the child should be helped to prepare for them.
  • Working consistently and in a coordinated fashion to promote positive behaviour, change and development.
  • The use of praise/rewards. These should be instant so the child recognises they are linked to positive actions.
  • Working on minimising or eradicating poor behaviour, obsessions and other difficulties.
  • Having clear aims, objectives and outcomes which are communicated to the child.
  • Using clear language.
  • Ensuring instructions are understood.
  • Monitoring and recording progress. Sharing good practice/things that work.
  • Teaching from the stage the child has reached with their learning.

Further information

www.fragilex.org

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