Rett syndrome and communication

Also called Rett and eye gaze, MECP2 and communication

Girls and women with Rett syndrome lose the use of their hands and mostly their speech, but not their minds; the eyes became the channel, and eye gaze technology changed everything.

What it is

Rett syndrome is a rare genetic neurological condition, almost always in girls, and the Health A-Z covers it as Rett syndrome. After typical early development, usually between six and eighteen months, a girl loses purposeful hand use and most or all speech, and develops the hand-wringing movements the condition is known for.

For a long time that regression was read as a loss of understanding, and people with Rett syndrome were assumed to have a profound learning disability. The eye gaze era has overturned that. Given a way to answer with their eyes, many show understanding, humour and preferences that nobody had credited. The condition takes the hands and the voice. It's now clear it leaves far more of the person than it was ever given credit for.

Who it can help

Families of girls and women with Rett syndrome at any age, and the schools and care teams around them. The approaches here apply to anyone whose reliable movement is limited to the eyes.

It's not a complete guide to Rett, which involves breathing, seizures, scoliosis and much else; the point here is that communication isn't a low priority to get to once those are managed. It's what makes managing them bearable.

How it works

The strong, purposeful eye pointing that families of girls with Rett describe ("she looks at what she wants, then at me") is the foundation. It scales from looking at one of two objects held up, to an E-Tran frame with symbols at the corners, to a dynamic display eye gaze computer with thousands of words.

Eye gaze devices track where the eyes rest and select after a set dwell time. Girls with Rett often need a longer dwell and a bigger target than the defaults, and apraxia means the response to a request can take many seconds; wait time is everything. Consistency matters too. The device has to be there, on, and calibrated at meals, in lessons and at bedtime, not once a week in therapy.

Alongside the technology, partner-assisted scanning and a reliable yes and no (look up for yes, say) cover the moments when the device isn't there, which is most moments.

Getting started

Establish and write down the person's yes and no this week, and test it with questions you know the answer to. Hold up two real choices at meal and play times and honour the look, every time.

Ask for a referral to the regional specialised AAC service for an eye gaze assessment; Rett syndrome is one of the conditions they see most. Ask the school or care team to build device use into the day rather than into sessions.

Model on the device yourself. Talk to her as you'd talk to any girl her age, and answer the look.

Where to get help

Rett UK supports families, runs a helpline and has strong communication guidance including on eye gaze. Communication Matters explains the AAC service map. Suppliers such as Tobii Dynavox and Smartbox make the eye gaze devices and offer trials, though the assessment should come from the NHS service. NHS speech and language therapy is via the paediatrician or GP.