People with Rett syndrome can learn, are able to communicate very well, and they deserve to be given the opportunity to show this. The resources in this section will support the implementation of communication strategies and give practical, easy to follow advice for those with Rett syndrome, their families and their support teams at any stage of their journey. It is relevant for anyone looking to implement or enhance communication strategies, for educators wanting to communicate effectively with a student with Rett syndrome and for health professionals needing to include the person with Rett syndrome in all aspects of their care.
People often ask “Is someone with Rett syndrome competent?” The answer is “Yes”. The increased use of eye gaze technology and other teaching methods is demonstrating that not only is cognition unaffected but that people with Rett syndrome have a great desire and ability to learn. The phrase “Presume Competence” is gaining momentum within the Rett syndrome community. People with Rett syndrome should be spoken to in an age appropriate manner, they should be encouraged to communicate about a variety of subjects, explore complex thoughts and can be educated on a level with the National Curriculum. Some older people with Rett syndrome have been able to demonstrate that they have taught themselves to read, write and spell, have learnt to work with numbers and are able to learn at degree level.
Many physical symptoms hamper health, energy and concentration levels of both the person with the condition and those who support them. Apraxia disrupts neural pathways, interfering with learning and communication. This, along with the absence of verbal language and purposeful hand use, has historically led to the assumption that people with Rett syndrome were severely cognitively impaired.
You may be asking what should I expect? There will be highs and lows. There are no timescales or rules as to when these processes should start or how far/quickly you get. Nobody is suggesting that progress will be made overnight. What is being suggested however, is that previous assumptions as to the cognitive ability of a person with Rett syndrome are outdated and incorrect.
Many thanks to Callie Ward and Abigail Davison Hoult for their help with this work.