Care Speech Pathology

Fragile X Syndrome

Fragile X Syndrome affects about 1 in 4,000 boys and 1 in 9,000 girls in Australia. Many people have never heard of FXS, so it can be a shock when your child is given an FXS diagnosis for the first time. However, it is important to know you are not alone, and early diagnosis and intervention can make a real difference. Speech Pathologists in Australia are specially trained to improve the speech, language comprehension and swallowing functions of children with FXS, by using evidence-based programs and intensive intervention.

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At Care Speech Pathology, we know how to help.

You have probably noticed a range of subtle (and some not-so-subtle) signs of your child having FXS. These might include some or several of the following:

Speech characteristics

Fast rate
Disordered rhythm
Oral and verbal dyspraxia
Increased volume

Language characteristics

Strong visual skills
Strong imitative skills
Good sense of humour
Strengths in receptive language (understanding) over expressive language
Poor abstract reasoning skills
Difficulties with auditory, memory, sequencing skills
Difficulties with social communication and interactions, often including social anxiety
Limited attention and/or behavioural management skills

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What is Fragile X Syndrome?

FXS is a genetic condition often causing intellectual disabilities that can have a wide range of associated issues including behavioural, social, sensory and learning challenges. FXS is diagnosed by DNA testing, which can be arranged by a GP or Paediatrician.

A high percentage of individuals with FXS will experience difficulties with speech, language and communication. Some individuals may also have problems with eating, drinking and swallowing due to poor muscle tone.

How can we help kids with Fragile X Syndrome?

Speech Pathologists are often one of the first professionals to see children with FXS as they are commonly late talkers. There are a number of intervention strategies that are useful for FXS.

Step

To reduce anxiety and ensure that the child feels as comfortable as possible, we will generally recommend that therapy takes place in a familiar environment. At Care Speech Pathology, we deliver all of our therapy sessions online over videocall (also known as “telehealth”) which allows children to attend sessions from the comfort of their own home (or even bedroom!). From there, we will start by completing a comprehensive assessment to determine how your child’s communication is impacted by FXS. This assessment may include standardised tests, informal assessments, and observations of their speech in different contexts.

Step

We can then plan individualised therapy based on your child’s specific strengths, needs and, most importantly, their personal interests. Therapy will use various strategies to address your child’s auditory comprehension and motor planning difficulties. Treatment will involve a lot of repetition but we can cater this to your child’s attention abilities. Sessions might work on making some words and phrases more automatic, pairing auditory information with visual cues, as well as using calming techniques to reduce anxiety and focus attention and activity. Therapy will always incorporate family education so that the all-important practice can continue during the week at home.

Step

We will also consider your child’s communication as a whole and if there is anything else we can be doing to support them. For example, it might be suitable for your child to use other means of communication to support them in expressing their message, such as Augmentative and Alternative Communication (AAC). AAC can be simple (e.g., a communication book or some simple hand signs) or a bit more advanced (e.g., a communication app on an electronic device). AAC can also support a child to develop their language and literacy skills while they continue developing their speech.