Stephen Hawking was a larger-than-life figure, studded with superlatives for his incredible contributions to the field of theoretical physics. But Hawking was perhaps just as well known for something else: he was severely disabled by a degenerative illness known as ALS or Amyotrophic Lateral Sclerosis. Diagnosed at the age of twenty-one, Hawking lived with ALS for fifty-five years, eventually losing volitional control over his entire body. With an average post-diagnosis life expectancy of two to five years, some believe that in surviving to seventy-six years of age, he earned another superlative as the longest-lived person post-ALS diagnosis.
But with such a debilitating illness, how was Hawking able to continue conducting research, giving talks, and writing books? How was he able to continue communicating with the world once he’d lost the ability to speak? The answer is the topic of today’s article: augmentative and alternative communication, also known as AAC.
What is AAC?
It’s a long and complicated name, but the idea of augmentative and alternative communication is actually quite simple. Let’s break it down. Augmentative means to add to or improve a person’s communication, while alternative refers to being an alternative to speech. So in essence, AAC is any form of non-spoken communication that enhances a person’s ability to express themself. It’s an umbrella term that encapsulates anything from gestures or sign language to the high-tech communication system that allowed Stephan Hawking to speak by twitching one of his cheek muscles.
Who uses it?
Technically speaking, if you’ve ever used a facial expression to show that you’re surprised or upset, nodded your head yes, or written a text message, you’ve used AAC. We all use alternatives to speech to communicate in our daily lives. However, in general, AAC is used more specifically to refer to the communication systems and methods used by people who are unable to adequately express themselves through spoken language.
Some of the most frequent users of AAC include people with congenital disabilities, such as autism spectrum disorder, cerebral palsy, genetic syndromes, intellectual disability, or hearing impairment, who may be unable to use verbal language due to physical impairments or learning difficulties.
Many people with acquired disabilities also use augmentative and alternative communication. Strokes, head injuries, and degenerative illnesses, such as Parkinson’s Disease, Huntington’s Disease, and ALS, can all affect people’s speech and language capabilities.
In the past few years, however, people have begun to use AAC systems to improve the communication capabilities of some unexpected groups with limited speech abilities: babies and animals. We’ll take a deep dive into the specifics of how AAC is being used with these populations, but first, let’s talk about the three main types of AAC systems: high tech, low tech, and no tech.
High-tech AAC systems
High-tech AAC refers to any kind of computerized communication device. Speech-generating devices, much like the one used by Stephen Hawking, are one of the most commonly used high-tech AAC systems. There are lots of different types of speech-generating devices, and what a person uses will depend on a few factors, including how and what parts of their body they have control over to input messages into the system, and whether or not they know how to read and write.
Over the years, Stephan Hawking utilized many different speech-generating devices. During the 1980s, he used a joystick that effectively allowed him to type out his message by moving from letter to letter across a screen. As his disease progressed, however, he lost more control over the muscles of his body, making it painstakingly slow to input messages in this way. Fortunately, he was able to work directly with a team of developers that were constantly updating his speech-generating device to make it more efficient. By the time of his death, he was utilizing a word predicting system that was individualized to his speech patterns and writing style. For example, one of his frequently used phrases, ‘the black hole,’ didn’t require any typing. By selecting the word ‘the,’ his system would automatically offer ‘black’ as the next word. Selecting ‘black’ would then predict the word ‘hole.’
Stephen Hawking controlled his final speech-generating device by twitching a muscle in one of his cheeks. In fact, high-tech AAC systems have been developed with incredible ingenuity, such that even people who retain virtually no control over their bodies can still communicate. There are systems that can be operated by eye gaze, breath, and even brain signals. Known as brain-computer interfaces, these are extremely high-tech systems capable of picking up on electrical activity in the brain and translating it into a message that is output by a computer system.
Voice Banking
Another exciting development in the world of high-tech AAC is voice banking technology. Voice banking allows people with progressive neurological illnesses such as motor neuron disease or ALS to record and store their voices for use at a later date. Here’s how it works: in the early stages of illness, a person records themself saying hundreds of words and phrases. Those words and phrases are then used to produce a synthesized version of their voice. Once their illness advances to the point that they can no longer speak, they then begin using a speech-generating device that is programmed with their synthesized voice.
Unfortunately, at this stage in the development of voice banking technology, speech output still retains the robotic qualities of speech programs like Siri or Alexa because individual recordings of words and phrases need to be cut and pasted together to create unique sentences. However, speech banking allows people to speak using their own accent and vocal quality, which can be a significant consideration to a person seeking to retain a sense of their identity in the face of a debilitating illness. Additionally, voice banking technology allows for message banking, in which a person can record themselves saying words, phrases, or sentences that are particular to them or that they use frequently. Banked messages don’t need to be synthesized together from many different recordings, and thus retain the full original quality of the person’s voice.
Most common AAC systems
Still, perhaps the most common types of high-tech AAC systems remain those that are hand-operated. About one in one hundred people in the world are autistic. And between twenty-five and thirty percent of people on the autism spectrum are non-verbal or minimally verbal. This population is thus perhaps the largest that stands to benefit from the use of augmentative and alternative communication. This is true because, interestingly, while many people with autism are unable to learn to communicate verbally, they can learn to communicate using speech-generating devices.
There are a number of apps, such as Proloquo2go and Touchchat, that are frequently used by speech-language pathologists to teach children with autism and other disabilities to communicate. Many of these apps are symbol boards that consist of anywhere from twenty to hundreds of buttons, each one displaying a simple picture and word, which is spoken by the app when pressed.
But how do people who are unable to learn verbal speech learn how to communicate using AAC? The simple answer: modeling. Lots and lots of modeling. Just as young children need to have millions of words modeled to them before they ever start to speak, kids who use AAC systems need to be shown how to use them for weeks, months, or even years as part of the learning process.
Generally, what’s known as core vocabulary – a group of about one hundred of the most commonly used words by people learning to speak – is taught first. These include words like ‘more,’ ‘want,’ ‘help,’ ‘come,’ ‘finished,’ ‘I’ and ‘you,’ and they are an extremely effective starting point because many of them can actually be used to show non-speaking children one of the most fundamental purposes of language: to have our basic wants and needs met. Thus, we start off by modeling language that shows kids the cause and effect of communication. Every time the child reaches for another block or another cracker, the parent, sibling, or speech-language pathologist models the word ‘more’ by pressing the ‘more’ button on the device and saying the word aloud. Only then do they give the child more of what they are after. They may also draw the child’s hand to the device and show them how to press the ‘more’ button. Once this has been shown hundreds of thousands of times, just like with spoken speech, a lightbulb goes on. If I want more, all I’ve got to do is push the ‘more’ button, and I will get more.
It’s through core vocabulary that both verbal and non-verbal individuals begin to learn the beauty of communication. At its most elemental, communication is a way to reduce frustration by taking away the guesswork that our carers have to engage in when a cry could mean I’m hungry, sleepy, need to go to the bathroom, missing mom, or wanting to play. At its most fundamental, language allows us to start being specific about what we want and need.
Once the core vocabulary has been mastered, carer’s can then begin to model fringe vocabulary on the AAC device. This includes things like the names of animals, specific foods or drinks, places, people, and everything in between. Many AAC apps allow the users to personalize their fringe vocabulary so that you’ve got a button for Aunt Mary, one for your favorite dinosaur toy, and one each for Papa John’s and Dominos pizza. When somebody reaches the stage where they are expanding into fringe vocabulary, they are also likely to be putting words together to form phrases and sentences by pushing a series of buttons on their device rather than just one at a time. Learning to use AAC thus mimics the process of learning spoken language. A slow trickle of individual words eventually leads to an explosion, and suddenly we are communicating not just our wants and needs, but our thoughts, hopes, and dreams.
Low tech AAC
As the name suggests, low-tech augmentative and alternative communication systems are those that do not require the use of electronics and are generally cheaper to produce and buy. One common example of this includes picture exchanging, in which a board is developed with pictures of common activities, items, or people in a child’s life. In order to make a request, a child takes a picture from the board (e.g., of a bag of their favorite pretzels or of their Frozen doll) and gives it to their caretaker.
Another type of low-tech AAC system is a communication dictionary. This is often used with children who use non-typical forms of communication that may be difficult for people they don’t know to interpret. It often includes a list of a person’s communication behaviors, what they mean, and how the person in their presence should react to them. For example, Sarah might flap her hands when she is feeling anxious, to which a caretaker could respond by soothing her or trying to remove the cause of her anxiety (such as being in a noisy environment). John might pull his sweater over his head to show that he is feeling calm and happy. His communication dictionary might indicate that the best course of action is to leave him alone when he does this.
No tech AAC
Finally, we have the no-tech augmentative and alternative communication. This includes the use of gestures, eye movements, or sign language. Two types of signing are common forms of AAC: keyword sign and baby sign language.
Key word sign is often used with children whose speech development is delayed. It should be noted that keyword sign is different than sign language, which is a fully realized language with grammar and syntax rules like any spoken language. Key word sign, on the other hand, is used in much the same way as some high-tech AAC apps used to teach autistic people to communicate. It provides a visual cue that accompanies spoken language, and the provision of these two modalities at once – visual and verbal – is thought to aid learning. Just as with AAC apps, children learning keyword signs are taught core vocabulary first. Parents, speech pathologists, and other caregivers model the signs for weeks or months, and by demonstrating the cause and effect nature of early communication, they teach children to begin signing as well.
Significantly, research has shown that keyword sign does not hinder spoken language development. Some children who start off learning keyword signs go on to develop spoken language skills, while others may use it as a jump-off point to more advanced AAC systems, such as the high-tech communication boards discussed above.
Baby sign language
Once a controversial topic in the parenting world, over the past twenty years, baby sign language has become widely accepted as a wonderful tool for facilitating communication between babies and their caregivers. Speech is a complex process that involves the coordination of approximately one hundred muscles in the lips, tongue, throat, cheeks, and jaw. It takes children years to develop the fine motor skills necessary to make all of the tiny, perfectly coordinated movements needed to produce clear-sounding speech. Children know what they want and need much earlier than they are able to use words to say it, which can lead to frustration as parents try to interpret crying or screaming that could mean anything from, “I’m hungry,” to “I want that toy.” Enter baby sign language.
Unlike most types of sign language, baby sign language mostly relies on gross motor skills. Whole fists or flat palms are used to make signs, making the motor planning for baby sign language much simpler than that of spoken language. In this way, baby sign language allows babies to communicate before they’ve developed the skills necessary to do so through spoken language.
Not only does this reduce young children’s frustration with not being understood, but research has shown that it actually speeds up spoken language acquisition, increases parent-child bonding, and allows children to communicate vital information that might otherwise be missed, such as whether they are hurt or hungry.
Could AAC make it possible for us to talk to animals?
Trick question: it already has. Though research into the use of AAC with animals is nothing new, in 2020, California-based speech pathologist Christina Hunger went viral after teaching her dog, Stella, to communicate with her using a series of buttons similar to those used on apps such as the Proloquo2go. The buttons were bigger – paw-sized, to be precise – but the system was the same. By modeling with buttons that were pre-programmed with Hunger’s voice to say words like treat, walk, outside, cuddle, etc., Hunger was able to show Stella that each button was an input that led to a particular output. Hunger needed to be consistent. Every time she pushed the outside button, she brings Stella outside. Every time she pushed the treat button, she gives Stella a treat. But it worked. Stella began to press the buttons, and eventually, she was able to use dozens of words and even combinations of words, such as ‘mamma’ + ‘Stella’ + ‘outside’ to convey more complex messages.
Stella was followed by other internet stars, including a young sheep doodle named Bunny that inspired thousands of other TikTok users to begin using AAC systems with their dogs (and cats)! AAC boards for animals can now be bought online and have become a popular method for people to connect more deeply with the animals they share their lives with.
Communication as a human right
The rapid development of a myriad of AAC devices that can be used by used to facilitate communication for people with disabilities has been a huge step forward for human rights. In 1948, the Universal Declaration of Human Rights was published by the United Nations. Article 19 of the declaration makes clear that not only do all people have the right to “freedom of opinion and expression,” but also the right to be able to communicate. Disability legislation around the world now recognizes a fundamental truth: all people have the potential to communicate. Thus, the development of augmentative and alternative communication systems for people who are unable to communicate through traditional means, such as speaking or writing, has played a huge role in ensuring that more and more people’s communication potential is reached.
The Cost Barrier
Despite developments in AAC technology, access to appropriate communication systems remains an issue around the world. As this article has shown, there is no one-size-fits-all communication system for people that require an alternative to spoken language. For some, low-tech or even no-tech devices may suffice. For others, the only suitable option may be a speech-generating device like the one used by Stephan Hawking. Unfortunately, these types of devices can cost tens of thousands of dollars. But for those who have limited volitional control over their bodies, they may be the only possible avenue for them to connect with the world. Without such devices, they may be unable to communicate even their most basic wants and needs.
Currently, adults in the United States are not entitled to free assistive technology. People who require AAC devices are often forced to take out cash loans, rent-to-own, or purchase previously owned devices at reduced prices. Considering that many people with disabilities struggle to find work or are unable to work, any option that requires out-of-pocket payment arguably inflicts an unjust burden.
Children that need AAC devices are often required to jump through many hoops to get them as well, such as looking to their schools for funding (which then means the school owns the device and the child is only able to use it temporarily) or paying large out-of-pocket sums to cover costs that are not taken on by insurance companies.
Despite being diagnosed with a degenerative illness with a terrible prognosis, Stephen Hawking survived into old age and performed incredible feats for humanity throughout the course of his life. He was a superlative figure in many senses, but make no mistake: if he hadn’t had the financial means to access the best healthcare and the most cutting-edge AAC systems of his time, the world would have missed out on the genius of a great man.
Stephan Hawking survived and thrived much longer than anybody could have expected. But this is not the case for most people with disabilities that affect their ability to communicate. Thus, in order to ensure that the right to be able to communicate as laid out in the Universal Declaration of Human Rights is respected, it is essential that cost no longer serves as a barrier to accessing communication devices and other relevant therapeutic services, such as speech therapy to learn to use an AAC device. Only when all people are able to reach their full communication potential will we have truly done justice to the fundamental human right to be able to communicate.
Janet Barrow holds a B.A. in Written Arts from Bard College, and a Master of Speech-Language Pathology from the University of Sydney. She works as a pediatric speech pathologist and freelance writer, and is currently finishing her first novel.