Fragile X Syndrome

About Fragile X

Fragile X Syndrome (also known as Martin-Bell syndrome) is a genetic condition resulting in physical, intellectual, emotional and behavioural problems. Fragile X can be passed on genetically within families, and is particularly common in boys.

This is the most common cause of inherited mental impairment and can range from learning disabilities to more severe cognitive or intellectual disabilities. Symptoms can also be physical and behavioural and frequently include a delay in speech and language development. People often describe children with this syndrome as having characteristics similar to autism.

• Speech and language delay
• Decreased eye contact
• hyperactive behaviour 
• hand clapping or biting
• Impaired cognitive functioning
• Large body size
• low muscle tone
• long face with large forehead and ears
• Flat feet

Speech, language and communication difficulties in Fragile X

Language and communication skills are an integral part of life, enabling a child to form meaningful relationships and friendships, and to express needs, wants and emotions. Language skills are also key to learning well in the classroom.

Children with a diagnosis of Fragile X can have a range of language difficulties. A child could have a mild stutter through to difficulty pronouncing words clearly or they may not be able to talk at all. Most importantly, they have a very difficult time using their language appropriately in a social context. They may find it difficult to read ‘hidden’ cues, such as facial expressions and body language. Due to this, they may be isolated from their peers due to interrupting, not ‘getting’ the joke, or not responding to others when they speak to them.

In the area of language, boys are often more severely affected than girls, but with the proper intervention both genders are able to make significant gains.

Helping your child with Fragile X

NETwork Interventions targets language, learning and behaviour, rather than dealing with generic definitions of conditions. This means that our focus is on your child’s individual needs and then equipping you and them with the skills they need to thrive.

In the case of Fragile X Syndrome (and so many other acquired conditions, disorders and behavioural problems) language and communication are often a significant part of the underlying problem.

NETwork Interventions specialises in Verbal Behaviour and has years of experience helping children with Fragile X learn new communication, social and language skills and replace problem behaviours with healthy, age appropriate behaviour patterns. This can include preventing the development of further anxieties and shyness, teaching socialisation skills and enabling your child to communicate more freely and express themselves with greater confidence.

Our starting point is to undertake a thorough assessment of your child to enable us to pinpoint the exact nature of the deficits. The process then involves us providing you with a comprehensive report outlining our proposed strategy for helping your child. This includes a realistic and honest appraisal of what we think your child can achieve, and the costs and time scales involved in getting there.

Did you know?

Most families of children with Fragile X who come to us initially thought their children had autism as most children develop typically until around 18 months – 3 years old.

With the right intervention, children with a diagnosis of Fragile X can go on to integrate into school, attend higher education, have successful careers and relationships. Each child we meet has the capacity to reach their unique potential

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"Our son was diagnosed with Asperger’s aged 7; NETwork Interventions spent a day observing him at school and at home and quickly identified the skills he was lacking – skill deficits that we - and others working with our son - had not picked up on. NETwork Interventions trained us to help our son learn those missing skills. The results have been remarkable – he no longer cries about going to school, his concentration and behaviour are much better and he is far less likely to alienate others by the things he says. Thank you."
Parent in Surrey

"It is always a pleasure talking to Lu and Shelley - we think they are superstars!"
C & C, Ottawa

"The observation and assessment period that NETwork complete at the beginning is difficult to understand at the outset, but it turns out that it is an intricate process that [does] indeed find the issues to work on and subsequently address and resolve."
Mum, Quebec

"Dillan had significant behavioural issues and received a very late diagnosis of NVLD when he was 9 years old. This diagnosis did little to help our family. Louise quickly and efficiently set up a programme for our teenage son which rapidly identified his strengths and weaknesses. Shelley taught us and his teachers how to best address these, including language deficits which had previously remained unrecognised, Louise’s team worked within our budget, working hours and extensive travel commitments, working closely with school and our local authority to ensure everybody was on board and funding accessed. At times it felt as though Louise was coordinating a small army. Additional support of parent-counselling through Louise’s team proved invaluable, even though we were originally a little sceptical. It most likely made the difference between success and failure in our ability as parents to sustain a positive family unit whilst implementing the programme. We worked with NETwork Interventions for just under one year."
Dr Edwards, North London

"We would like to say a massive thank you for your hard work during the 2 day assessment. We are so grateful and highly impressed with your level of knowledge, confidence, professionalism as well as the kindness and respect shown to our family. Now, we really believe there is light at the end of the tunnel."
Monica, UK