CHARGE syndrome: communication

This page is about how CHARGE syndrome affects the development of children’s communication skills. 

It covers specific features of the condition and their effects, ways to create the right conditions for communication with your child, and a total communication approach. 

There are also links throughout to other pages on this site for more detailed information on many of the topics included here.

On this page:

Sense is here for everyone with CHARGE syndrome

We offer support all over the UK. Whether you need some expert advice, a place to socialise, or help with communicating or getting around, we offer something for everyone. Because no one should be left out of life.

To find out what kind of support we could give you or your loved one, speak to one of our friendly team.

Why are communication skills affected in children with CHARGE syndrome? 

CHARGE syndrome is a condition with many features, including:

As a result, in many children with CHARGE syndrome, their communication skills are affected. This can affect their ability to express themselves and understand others. 

Specifically, communication skills in children with CHARGE can be affected by:

  • Varying degrees of hearing loss, depending on their symptoms and whether they can be effectively treated with hearing aids or cochlear implants.
  • Sight problems ranging from blurring of images to no perception of light or sight at all.
  • Delayed visual maturation. This is seen in newborns who at first don’t seem able to see or follow objects with their eyes. It usually improves by about four to six months of age without treatment, but can sometimes take up to 12 months.
  • Difficulty predicting the results of things they do or the effect on others (an executive function difficulty). This can lead to delayed reactions – which don’t always mean they don’t want to communicate. They just need more time.
  • Difficulty understanding abstract symbols (symbols that don’t refer to a specific object), if both their sight and hearing are affected.
  • Difficulty with intentional communication – for example, not understanding that pointing at a cup might encourage someone to get the cup or start talking about the cup.

Creating the right conditions for communication

Children with CHARGE syndrome need people to respond to them sensitively in a way that is meaningful to them. 

They often have their own way of processing information and how they feel, emotionally and physically, before they respond.

It’s important that they understand they can trust you and others to respond to them. This is essential to developing communication skills.

You can create the right conditions for trust and good communication with your child by:

  • Establishing a good relationship with them so that you can learn to recognise their processes and adapt to them. 
  • Organising their world by providing a safe physical and social environment.
  • Establish routines and predictable ways of doing things so that they feel safe.
  • Creating interesting situations that will stimulate them.
  • Providing enough one-to-one time.
  • Allowing them to take the initiative and bring their own to the conversation.

A total communication approach

A total communication approach works best for children with CHARGE syndrome. 

Total communication uses all forms of communication, including speech, vocalisations, body language, sign language, written text, braille, pictures and photographs, objects, concrete or tangible symbols (referring to specific objects) and more.

Read more about total communication.

This content was last reviewed in July 2023. We’ll review it again in 2025.