Redbridge SERC

Fragile X Syndrome

Description

Fragile X syndrome is the most common inherited cause of mental impairment.

The syndrome occurs in approximately 1 in 3600 males and 1 in 4000 to 6000 females.

Students with Fragile X syndrome have characteristic physical and behavioural characteristics.

Fact sheets

Training / Help

Hatton Outreach Service generally support pupils who have Fragile X.

You are entitled to refer a pupil to another service if you feel there is a more dominant need.

Videos

Screenshot for video: Fragile X medical profile

Fragile X medical profile

A clear animated video explaining the genetics of Fragile X and why male students are more greatly affected.

Screenshot for video: Fragile X syndrome and autism

Fragile X syndrome and autism

This video shows the links between Autism and Fragile X.

Screenshot for video: Fragile X - signs and symptoms of Fragile X

Fragile X - signs and symptoms of Fragile X

This is a good video visually demonstrating the different symptoms associated with Fragile X.

Lesson Resources

Fragile X syndrome lesson planning guide

http://www.fragilex.org/treatment-intervention/education/lesson-planning-guide/

This Guide is intended for classroom staff, providing practical information that includes:- Fragile X overview, behaviour, learning styles, educational resources, lesson plans and strategies.

Learning Aids

Twinkl Website great resources

Twinkl Website great resources

Available from: Twinkl resources

Highly recommended This is a great site with great clear resources for Literacy, Numeracy, Assessment, Language, Rewards, Visual timetable, Curriculum areas

Frequently Asked Questions

  • What are the educational implications for males with Fragile X?

    Cognitive strengths among males with fragile X include

    • verbal labelling and single word vocabulary
    • receptive (listening) vocabulary may be higher than expressive (speaking).
    • vocabulary for subjects of interest may also be higher than would be expected based upon overall scores.
    • visual matching and visual perception tasks with meaningful information (e.g. puzzles with a known picture, as opposed to abstract block designs) are often strengths.
    • Visual cueing is often a powerful learning strategy for boys with fragile X, and whole images, such as pictures, logos, or words can often be recognized well.
    • memory for situations and for favourite TV shows, videos, and songs is excellent in many boys.
    • boys and men with fragile X are often wonderful mimics, memorizing tone as well as words. Success with memory tasks seems to be strongly influenced by the meaningfulness and complexity of information presented.
    • good abilities to learn self-care and household management skills,

    Weaknesses could include

    • higher level thinking and reasoning skills. 
    • complex problem solving
    • cause and effect questions, and other abstract tasks are often areas of deficit.
    • visual-motor and visual construction tasks with abstract items (such as bead sequencing and block designs)
    • quantitative skills are also often a weakness for both males and females with fragile X. 
    • Arithmetic abilities may be weaknesses because of visual-spatial problems and poor concepts of quantity and number.
    • socialisation and communication items
  • Is there a different impact upon males and females?

    Impact on males

    • The majority of males with fragile X syndrome will have significant learning difficulties.
    • The spectrum ranges from learning disabilities to severe mental retardation and autism.
    • 80% of males have learning difficulties. In addition, males have a variety of physical and behavioural characteristics.
    • However, no male has all of these characteristics.

    Impact on females

    • Characteristics found in males can be found in females, however generally to a lesser degree.
    • 30% of females have significant learning disabilities; however 70% of females are less effected

     

  • What are the behavioural characteristics of students who have Fragile X?
    • attention deficit disorders
    • speech disturbances
    • hand biting
    • hand flapping
    • autistic behaviours
    • poor eye contact
    • unusual responses to various touch, auditory or visual stimuli. 

     

  • What causes Fragile X Syndrome?
    • A change or mutation in a gene on the X chromosome causes the fragile X syndrome.
    • Most individuals have 46 chromosomes, two of which are sex chromosomes.
    • In females, these are two X's; in males they are and X and Y.
    • The gene responsible for fragile X syndrome is called the FMR1 gene.
    • Normally, the FMR1 gene produces an important protein called FMRP.
    • When the gene is turned off, the individual does not make the protein.
    • The lack of this specific protein causes fragile X syndrome.
  • What are the physical characteristics of students who have Fragile X?
    • enlarged ears
    • long face with prominent chin
    • large testicles (in post pubertal males) are common.
    • connective tissue problems may include ear infections, mitral valve prolapse, flat feet, double-jointed fingers, hyperflexible joints and a variety of skeletal problems. 

Family Resources

Net buddy- holiday information pack

Website: 
http://www.netbuddy.org.uk/info-packs/holidays/
Description

Net buddy is a great website- full of ideas, tips and specific information.

They have prepared a great Holiday factsheet that has a very comprehensive list of holidays for students who have special needs.

Autism friendly cinema screenings

Phone: 
0871 22 44 007
Website: 
http://www.odeon.co.uk/fanatic/film_times/s126/South_Woodford/
Description

Odeon Cinema in South Woodford/Stratford Cinema have Autism friendly screenings. Films will start on promptly with no adverts/trailers. Carers go free.

Ring for the next screening planned.

Fragile X family support

Website: 
http://fragilex.org.uk/Families.aspx
Description

UK Charity specifically supporting families who have children with Fragile X syndrome.

Outreach Services

Hatton Outreach Service

Phone: 
020 8551 4131
Email: 
.(JavaScript must be enabled to view this email address)
Website: 
http://www.hattonspecialschool.co.uk/
Description

This specialist outreach support and consultancy service provides support for individual pupils in mainstream primary schools.

The outreach service works with pupils who have a range of significant language, social and learning needs.

Some pupils may have a statement of special educational needs, while others will have significant needs and working at school action plus.

Occupational Therapy

Phone: 
020 8924 6111
Website: 
http://www.redbridge.gov.uk/
Description

The Occupational Therapy Team are now based at Redbridge Child Development Centre (0 -19yrs), previously known as The Kenwood Centre in Barkingside.

Little Heath Outreach Service

Phone: 
020 8599 4864
Email: 
.(JavaScript must be enabled to view this email address)
Website: 
http://lheath.net/home
Description

Support can be provided for students with:

  • language and communication difficulties including Autistic Spectrum Disorders and Asperger’s Syndrome;
  • specific learning difficulties;
  • general learning difficulties.
  • specific language difficulties;