AAC and Rett Syndrome: Supporting Communication

Communication challenges are common in Rett syndrome, but that doesn’t mean communication is impossible. People with Rett syndrome often lose spoken language. Eye gaze and eye contact can be affected, especially during regression. Over time, they can learn to communicate in other ways. Augmentative and alternative communication (AAC) tools and strategies can help them do that.

Today’s AAC options are advanced and can make a big difference in a person’s quality of life. However, many tools remain underutilized. In this article, we’ll talk about several different AAC options for people with Rett syndrome and the potential benefits of each.

What Is AAC?

Augmentative and alternative communication strategies can support communication in two ways: augmenting (supporting or adding to) existing communication abilities or providing an alternative to speech.

People with and without Rett syndrome can use AAC, and a person might use it every day without thinking. Writing, drawing, and using facial expressions all count as AAC strategies.

How AAC Helps People With Rett Syndrome

AAC strategies are particularly beneficial for people who are nonspeaking or minimally verbal, including many people with Rett syndrome. AAC tools help them communicate with caregivers, teachers, family members, and friends.

Common Communication Challenges in Rett Syndrome

Many communication challenges can impact people with Rett syndrome, and AAC tools can address those challenges. Following are some of the most common communication challenges in Rett syndrome.

Loss of Spoken Language

The loss of spoken language can result in a person losing the ability to use all but a few words, if any. When a person can no longer express themselves by speaking, it may be time to explore AAC options.

Motor Impairment

Motor difficulties and unintentional hand movements can make some alternative communication strategies like sign language, writing, and gesturing difficult. AAC tools can provide other options or make these communication strategies easier.

Apraxia of Speech

Apraxia, which is common in Rett syndrome, involves difficulty planning and carrying out purposeful movements — such as reaching for a cup to take a drink — even when the muscles themselves may not be weak. Childhood apraxia of speech affects the planning and coordinating of the movements needed for speech.

Practical AAC Options

Some AAC tools use advanced technology, while others use little to no technology. The right AAC tool can help a person ask questions, make requests, show preferences, provide consent for medical care, and connect with others socially.

Low-Technology Options

Not all AAC tools use computers and technology to support communication. Some are low-tech strategies that speech-language pathologists and other professionals can teach and demonstrate. Following are some examples.

Partner-Assisted Scanning

Partner-Assisted Scanning (PAS) is a communication strategy that involves a second person helping interpret and support communication for a person with Rett syndrome.

With this method, the communication partner presents different options to the person with Rett syndrome and allows them time to confirm or reject each one. They may show “yes” or “no” answers with hand gestures, eye gaze, or vocalization, which the communication partner then interprets. The goal is for the person with Rett syndrome to make their preferences clear when making decisions.

Eye-Gaze Boards

Eye-gaze boards provide a way for a person with Rett syndrome to use eye movements to communicate. This may be a preferable option for people who experience motor difficulties that prevent them from using their hands to communicate.

A communication partner presents options on a board for the person with Rett syndrome to choose from. To make their decision clear, they direct their gaze toward the option they want. This can be a great starting point for people who may decide to learn higher-tech eye gaze AAC tools in the future.

Picture Cards

Picture cards or boards present images and symbols that represent words or ideas. Depending on their motor abilities, a person with Rett syndrome may point, gesture, or use eye gaze or partner support to indicate a choice.

High-Technology Options

Other AAC options use assistive technology to support a person’s communication. These options may require some training, but they can be used by people of all ages and with different communication abilities.

Speech-Generating Devices

Speech-generating devices (SGDs) are electronic devices that can produce spoken messages for a person. A person with Rett syndrome can use these devices to select preprogrammed messages using a keyboard or touchscreen, depending on the device. The device then generates a spoken message based on the user’s input.

Eye-Tracking Devices

Eye-tracking devices are electronic devices that work in a similar way to eye-gaze boards. They automatically track eye movements, allowing a person to use their gaze to choose words or phrases independently and communicate more directly. These devices are widely used by people with Rett syndrome because many have motor and speech-related communication challenges.

Tablet-Based Communication Apps

Some communication apps can be downloaded onto a tablet. These tablet-based communication apps typically show a customizable grid of symbols or text that allows a person to indicate what they want to say. The app then generates speech based on the person’s selections.

How Families Can Support AAC

Families and caregivers play important roles in helping people with Rett syndrome learn and use AAC tools. Family and caregiver engagement can have a major impact on how well these tools work and how confidently they’re used.

Making Care Decisions

For children with Rett syndrome, caregivers can help speech-language pathologists choose an AAC option that aligns with the person’s communication needs, goals, and abilities. They can also help interpret communication from AAC tools that don’t automatically generate speech.

Providing Emotional Support

Families and caregivers have a unique ability to provide emotional support and encouragement to people with Rett syndrome who are learning to use AAC devices. They can also help by advocating for their loved one in care settings while AAC tools are still being learned.

Customizing and Modifying AAC Tools

Many AAC tools are customizable, and families can help tailor them to ensure they’re useful for the individual with Rett syndrome. They can add different words, phrases, symbols, or categories that may be especially relevant in the person’s life.

Consulting a Speech-Language Pathologist

Speech-language pathologists offer professional guidance for choosing and using AAC tools. Family members and caregivers can find trusted speech-language pathologists to help narrow down AAC options based on a person’s needs.

Preparing for New Settings

Families and caregivers can facilitate collaboration between healthcare providers, educators, therapists, and others who may be involved in a person’s life. They can bring AAC tools or devices to school or other new settings and collaborate with others to help a person with Rett syndrome get the most out of their augmentative and alternative communication skills.

Tracking What Works

Caregivers and family members often spend the most time with people with Rett syndrome. As a person starts using new AAC tools, families and caregivers can track what works best and share feedback with speech-language pathologists.

Talk to Your Doctor

If your child or loved one has speech or movement challenges related to Rett syndrome, an AAC tool can help them express themselves, advocate for themselves, and build connections with others. An AAC tool can be a valuable addition to a Rett syndrome treatment plan.

Not all tools are alike, so it’s important to find one that aligns with a person’s abilities, needs, and goals. Talk to your doctor about getting in touch with speech-language pathologists, occupational therapists (specialists who help with everyday skills and activities), and other healthcare professionals who can evaluate the person’s needs and make recommendations.

Join the Conversation

On MyRettTeam, people share their experiences with Rett syndrome, get advice, and find support from others who understand.

Which types of AAC are you most familiar with? Let others know in the comments below.