Any human who cannot use their hands, speak, or move freely is going to have trouble convincing others of their understanding.
But as more research into the underlying causes and mechanisms of the disorder are coming to light, it is more apparent that the cognitive abilities of people with Rett Syndrome have been underestimated for decades.
People with Rett Syndrome are often much more intellectually capable than they appear but because they are unable to communicate or ask questions their learning can become stunted, furthering the low expectations which are usually set for them.
Sometimes people, even professionals, make assumptions about the understanding of people with Rett Syndrome based on their inability to follow directions. People with Rett Syndrome have a problem called motor apraxia or dyspraxia, which disrupts their ability to make planned motor movements.
This is why someone with Rett may be able to scratch an itch or reach for something they want, but cannot point to something or pass something to us on demand. Scratching an itch or reaching for a desired item is an instinctive movement whereas responding to questions or demands involves more complex motor planning which is difficult and sometimes impossible for someone with Rett.
Research has shown that because of these difficulties and the otherwise limited repertoire of physical abilities in girls and women with Rett Syndrome, eye-gaze equipment is often the most feasible method of communication for this population.
If you are a teacher, speech and language therapist or other educator, please check out the Rett University website where you can find inexpensive online training courses and other resources related to learning and communication for people with Rett Syndrome.
If you are a parent of a person with Rett Syndrome of any age, more useful information about accessing eye-gaze technology in the UK can be found here.