Rett Awareness Month: How AAC helps people with Rett Syndrome communicate

When Nadia was diagnosed with Rett Syndrome as a toddler, her mom Marisela struggled at first to help her daughter communicate. As Rett is a rare disorder, finding professionals who understand its specific challenges is often difficult. At the time, AAC was still new to everyone supporting Nadia, including her speech therapist, who was learning alongside Marisela how to best support Nadia’s communication. 

Eventually, they visited a clinic in another state that specialized in Rett Syndrome. It was there that an occupational therapist introduced an eye gaze AAC device to the family. 

“Nadia looked at the device and then she looked at me, and it was like an instant connection,” said Marisela. 

What is an eye gaze AAC device? 

AAC is short for augmentative and alternative communication, and it’s any form of communication besides natural speech. 

An AAC device is a type of high-tech augmentative communication. Eye gaze AAC devices are controlled through eye movement. The eyes act like a computer mouse to select symbols, words or phrases within a text-to-speech app on the device. The selections are then projected through speakers in a synthetic voice. 

According to a recent independent study, a high-tech AAC device can increase quality of life by 65 percent for someone with a disability, while reducing stress for caregivers. 

For most of her life, Nadia has switched between two different AAC devices: TD Pilot and TD I-Series. TD Pilot uses iOS, while TD I-Series uses Windows. Eye gaze compatible applications like TD Snap make it easy for Nadia to swap between operating systems at home and at school without missing a beat.  

How do you get an AAC device? 

Finding the right communication solution starts with an AAC evaluation. A speech therapist will work with a Tobii Dynavox Solutions Consultant to explore devices and software to determine the best fit for the client’s needs, goals and preferences. 

How do you pay for a device?  

Most eye gaze devices are paid for through insurance. A speech therapist will work with the Tobii Dynavox funding team to complete the application process. 

How do you personalize a device? 

Customizing an AAC solution helps the communicator to connect with it more deeply and can prevent device abandonment. One vital aspect of personalization is choosing a synthetic voice that reflects their identity. Communicators can select from hundreds of pre-made synthetic voices with different accents and tones or ask a family member or friend to make a digital copy their voice through a process called voice donation. 

Read about different voice options.

Now 16, Nadia uses her device to serve on student council and express her big personality. Recently, she let Marisela know she doesn’t actually like pink and purple clothing. (She prefers black.) Thanks to her AAC device, Nadia can gossip, call her grandma, listen to music, read books and online shop, all with just the movement of her eyes. 

Learn more about the difference AAC can make for people with disabilities.