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Speech and Language Therapy for Rett Syndrome

Speech and language therapy is highly beneficial for individuals with Rett Syndrome. Most individuals with Rett Syndrome will not be able to speak, however, there is still a lot that a Speech and Language Therapist can do to support the communication skills of individuals with Rett Syndrome.

When individuals with Rett Syndrome have no verbal (spoken) communication, there are a variety of non-verbal communication methods that can be provided, as well as communication aids that may be beneficial to help support the individual's communication.

Speech and language therapy will focus on improving, supporting and developing the communication skills of individuals with Rett Syndrome. Speech and language therapy will plan intervention throughout the stages of Rett syndrome to meet the specific needs and abilities of the individual. Therapy will reflect the chronological age and interests of the individual and will be adapted accordingly as they grow e.g. appropriate vocabulary and activities.

Speech and language therapy will usually work on receptive (understanding) and expressive communication through use of Alternative and Augmentative Communication (AAC). AAC is any form of communication other than speech.

Types of AAC used for individuals with Rett Syndrome may include:

  • Picture symbols
  • Objects of reference
  • Sign language

Use of AAC helps to develop receptive communication and reduce frustration by allowing the individual with Rett syndrome to express their wants and needs. AAC can consist of hi-tech communication aids e.g. use of computer software and electronic communication systems. AAC also includes low-tech aids which generally consist of pictures, symbols, objects of reference and use of the individual's body to communicate.

The speech and language therapist will also help to improve an individual's communication skills by making the parents / carers more aware of the individual's difficulties and also by training them in using the communication aids and strategies used in therapy.

Receptive language skills can be increased through language stimulation. Language stimulation involves others communicating with the child throughout thier daily activities e.g. talking to the child through activities such as feeding, dressing and playing etc.

In general Speech and Language Therapy interventions for Rett Syndrome will address:

  • Language stimulation
  • Development of receptive language skills
  • Interventions to improve eye contact and direction
  • Developing visual and auditory attention to stimuli
  • Development of cognition and thinking skills

Most children with Rett syndrome will not reach the developmental milestone of expressive vocabulary. Some children will progress to learning approximately 20 words before regression occurs, and all language is lost. The reason behind this regression in expressive language is not known.

Speech and Language Therapy interventions are possible throughout all four stages of Rett Syndrome and it is important that they address communication needs, receptive language development and expressive skills.

Play is also important to help develop communication and receptive language skills. Children should be encouraged to hold and manipulate toys and different materials, whilst the parent / carer should demonstrate and talk about activities to help develop receptive vocabulary.

As the majority of children with Rett Syndrome will be non-verbal, Speech and Language Therapy will provide the children and their parents / carers with alternative strategies to enable communication with others and their surroundings.

Speech and language therapy is highly beneficial for individuals with Rett syndrome. Speech and language therapy will help to improve communication by supporting the individual, their parents / carers and other professionals involved in their care in creating a more positive communication environment.

To arrange an assessment with one of our speech and language therapists please contact us by emailing or calling 0330 088 6693.

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