People with spinal muscular atrophy (SMA) sometimes face challenges with the clarity or volume of their speech, or can become fatigued while speaking. People who have difficulties with speech can sometimes be classified as experiencing dysarthria (difficulty speaking) or anarthria (near-total inability to speak). These folks can oftentimes benefit from different assistive devices like augmentative and alternative communication (AAC).

AAC refers to any kind of communication that does not involve making words with vocal cords. This can include sign language, facial expressions, gestures, writing, and more. Advances in computer software and medical technology are being combined and developed into new AAC systems every day, involving a wide variety of tools to better enable users to communicate with others.

Dr. Jonathan Strober, director of the Neuromuscular Clinic at UCSF Benioff Children's Hospital, was recently interviewed by mySMAteam.

“Communication devices can be a game-changer,” explained Dr. Strober. “There are speech and language pathologists who can help figure out the best communication device. It’s so important to be able to communicate your wants and needs, to be able to have personal interaction with somebody. Communication devices are extremely important.”

Communication Is Essential

Communication is essential for our health and well-being, enabling us to:

• Create interpersonal relationships
• Achieve at school or work
• Increase independence and accessibility
• Enhance relaxation activities
• Express our wishes, desires, and emotions to caregivers, family, and more

Learning language early in life is also a crucial phase in our cognitive development. Studies show that those who do not have the opportunity to gain language skills early in life have increased difficulty acquiring it later on. For this reason, communication skills and academic achievement suffer as a result. A common myth is that AAC delays or hinders language acquisition, but AAC has been shown to enhance language learning. It is crucial to do everything possible to promote and enable communication for everyone.

Types of AAC

Many types of AAC have been developed over time, with modern technology making new and exciting new advances every day.

Unaided Systems

An unaided system of alternative communication does not involve tools or technology. This includes body language or gestures, sign language, and facial expressions.

Basic Aided System

A basic aided system for AAC includes tools like picture and letter boards, where a user points or touches to indicate a choice. Other kinds of basic, or non-tech, aided systems include photographs arranged on a board, objects, and manually writing messages.

High-Tech Aided System

High-tech aided systems use computerized software and/or specialized medical technology to help capture communication. These can be used to write short messages or documents of any length. There is also technology that can turn these messages into audible speech. Systems using this combination of technology are often referred to as speech-generating devices (SGDs).

With their team of health care professionals, users select the system or combination of systems that best suit their needs.

How Does It Work? Selection Techniques

Most AAC systems provide selections from which the user can choose. Those selections may be provided in a variety of different formats.

Direct Selection

Direct selection can be achieved through touching selections and buttons, head or eye tracking (eye gaze) technology, eyebrow movement, or even using your breath to blow into a tube. Head tracking oftentimes includes either attaching a small reflective dot onto the user’s forehead, which a device then tracks, or fitting a safe laser or another kind of pointer to someone’s head. Direct selection is great for people who have good control of their head and neck, eye movements, or the ability to make selections on a board or touchscreen with a finger or toe, but it can also be designed to work with a system of toggling switches or a joystick.

Scanning

Scanning technology for AAC consists of some way in which choices are scrolled past the user. These choices can be single letters, words, phrases, or pictures. The user often makes their selection by toggling a switch when their choice is highlighted.

Encoding

Encoding technology is a little like the old speed-dial technology, where you can pre-program the device with often-used phrases. For example, one could program choosing option “1” to instruct the device to write or speak “Hi, how are you?”

Speech Recognition

Speech recognition software to help people with dysarthria is not yet widely available but is being researched.

Brain-Computer Interface

An exciting new avenue of exploration is into brain-computer interfaces. These systems can be invasive (with technology being implanted directly onto the relevant area of someone’s brain or skull) or noninvasive (using external sensing devices, similar to electroencephalography). These types of devices can also be referred to as “cognitive prosthetics.”

Several types of these systems are being tested and developed worldwide, including those that enable a user to operate mechanical devices that aid hand and arm movements, control a power wheelchair, activate smart home appliances, and even enhance memory and learning in people experiencing cognitive decline. The possibilities of these technologies for those experiencing SMA are limitless, including enhancing the ability to use AAC and SGDs.

Choosing and Funding Your AAC System

Your team of assistive technology professionals and clinicians, including a speech-language pathologist, occupational therapist, and a learning specialist will help guide you and your family to choose the device combination that is right for you. They can also initially program your device, teach you how best to use it, and make adjustments over time as necessary.

Your AAC and SGD systems might include an array of dedicated hardware made specifically for the purpose, or simply an app downloaded onto a tablet or smartphone. For example, one mySMAteam member states that her son “has three different types of speech software on his laptop, which makes everything so much easier for communication.” One well-known brand is Tobii DynaVox, a company that makes both dedicated devices and mobile applications.

Dedicated AAC and SGD devices fall under the category of durable medical equipment and are covered by many insurance companies. Some insurance carriers also subsidize nondedicated equipment, like tablets that can be programmed with apps. Insurance coverage varies by state, carrier, and individual policy. Your health care team should help guide you toward choices that your family can best afford. If you are having problems affording your device, contact all local and national resources available to you, including:

• Cure SMA
• The Muscular Dystrophy Association
• Your state’s assistive technology association

Talk With Others Who Understand

On mySMAteam, the social network for people with SMA and their loved ones, more than 1,200 members come together to ask questions, give advice, and share their stories with others who understand life with SMA.

Do you use an ACC device or app? Have tips or tricks to share? Share your experience in the comments below, or start a conversation by posting on your Activities page.