Eye Gaze Technology as a Form of Augmentative and Alternative Communication for Individuals with Rett Syndrome: Experiences of Families in The Netherlands

Gillian S Townend*, Peter B Marschik, Eric Smeets, Raymond van de Berg, Mariёlle van den Berg, Leopold M G Curfs

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review


This paper provides a brief report on families' experiences of eye gaze technology as one form of augmentative and alternative communication (AAC) for individuals with Rett syndrome (RTT), and the advice, training and support they receive in relation to this. An online survey exploring communication and AAC was circulated to 190 Dutch families; of the 67 questionnaires that were returned, 63 had answered questions relating to eye gaze technology. These 63 were analysed according to parameters including: experiences during trial periods and longer-term use; expert knowledge, advice and support; funding; communicative progress; and family satisfaction. 20 respondents were using or had previous experience of using an eye gaze system at the time of the survey, 28 of those with no prior experience wanted to try a system in the future. Following a trial period, 11 systems had been funded through health insurance for long-term use and two families had decided a system was not appropriate for them. Levels of support during trials and following long-term provision varied. Despite frustrations with the technology, satisfaction with the systems was higher than satisfaction with the support. The majority of families reported progress in their child's skills with longer term use. These findings suggest that although eye gaze technologies offer potential to individuals with RTT and their families, greater input from suppliers and knowledgeable AAC professionals is essential for individuals and families to benefit maximally. Higher levels of training and support should be part of the 'package' when an eye gaze system is provided.

Original languageEnglish
Pages (from-to)101-112
Number of pages12
JournalJournal of Developmental and Physical Disabilities
Issue number1
Early online date19 Oct 2015
Publication statusPublished - Feb 2016


  • Rett syndrome
  • Communication
  • Eye gaze technology
  • Eye tracking
  • Augmentative and alternative communication (AAC)
  • Support and training
  • NEED

Cite this