To make decisions about AAC and to provide efficient support, it is essential to look at the individual needs of the person, and at the specific problems that come with the communication difficulties.
There are four basic principles that apply to all people who can’t rely on natural speech. They can be implemented immediately.
1. Just ask
Just ask an AAC user how they want to be supported and what specific help, if any, they need. Many AAC users are problem-solving their communication needs without any professional support. All people who use AAC need to be involved in planning and decision making.
2. Value multimodal communication
The goal of AAC is to add more tools to the person’s communication toolbox. Continue to value and support all the other methods the person currently uses, including gestures, signs, and all attempts at spoken words.
3. Communication partners
AAC is only one part of improving communication. AAC is most effective when communication partners are skilled and responsive, so support them and provide training. Good communication partners listen, wait, and support an AAC user on their own terms.
4. Respect personal choice with AAC
Many people with communication disabilities have additional disorders that affect their wellbeing. Some have significant medical needs. Some experience challenges with mental health. Others have processing disorders that affect how they see, hear, and move. Many AAC users have complex bodies that process information differently each day. These co-occurring conditions affect the AAC user’s ability to use AAC at different times. Only the AAC user knows when and how it is best or easiest to communicate.
Mapping individual needs based on disability type
To optimize communication support and make the right choice for AAC, we have divided AAC users in four different disability groups. Based on this categorization we can find means to communicate that levels the playing field and that suits every individual. Be aware that the diagnosis is only a general roadmap to help find the strategies and tools that may be helpful. The core of this process is focusing on identifying the person’s unmet communication needs.
Generally, we can group speech disabilities into four categories:
- Developmental disabilities and genetic conditions (e.g., autism, Down syndrome, cerebral palsy.)
- Acquired disorders (e.g., traumatic brain injury, stroke, dysarthria.)
- Progressive disorders (e.g., Parkinson’s disease, motor neurone disease, amyotrophic lateral sclerosis.)
- Cognitive-communication disorders (e.g., dementia, aphasia)
1. Developmental disabilities
Developmental disabilities are present at birth or develop in childhood. They include genetic disorders, such as Down syndrome, Angelman, Rett, and Fragile X, and other disorders like autism, cerebral palsy, childhood apraxia of speech, and intellectual disability. All these disabilities can limit speech.
Vocabulary and access
There are no age or skill pre-requisites to starting AAC with this group. No one is too young, too old, or too “low-functioning” to communicate. Select AAC that allows the person to talk about a wide range of topics, express opinions, tell stories, and ask and answer questions. Provide a balanced vocabulary with as many words on the page that they can see and touch. If the person cannot see and touch a large vocabulary, then plan for alternate access strategies (e.g., partner assisted scanning or switch scanning). Provide literacy instruction.
Any person with a developmental disability, who is first learning to use AAC, can benefit from modeling. Modeling is when the support team and communication partners use the system themselves, pointing to symbols on the AAC as they speak. Modelling is especially important for any person who is still developing their ability to understand speech.
Adapt your strategies
Support the decision-making process
People with developmental disability often need explicit support to make and express their own decisions. Supported decision-making can maximize their choice and control over their life.
2. Acquired disorders
The ability to speak can be lost due to injury to the brain (stroke), chronic disease (throat cancer, Parkinson’s, or multiple sclerosis), or damage to the nerves and muscle tone of the throat or vocal chords. If the acquired disorder was from a single event, like a stroke, then speech may be affected in very different ways after the event and during recovery. Someone with an acquired disorder usually knows exactly what they want to say, but cannot find or speak the words.
AAC as support strategy
Offer AAC as soon as possible after the person has lost speech. AAC is helpful even while therapy is provided and if speech improves. AAC supports residual speech. It reduces vocal strain and allows the AAC user to save their voice for when it matters most. If the person can speak, they will.
Social importance of AAC
AAC can help ensure that loss of speech does not have to mean isolation, loneliness, or silence. Problem-solve how to support social roles, such as maintaining friendships, employment or volunteering, and leadership and mentoring opportunities. Consider how tools like social media, or starting a blog or personal newsletter, can support storytelling and maintain contact with the people who matter most.
3. Progressive disorders
Progressive disorders cause a loss of speech over time. Some acquired chronic disorders are also progressive (such as multiple sclerosis and Parkinson’s disease). This loss of speech can occur gradually or very rapidly (such as in motor neuron diseases, like ALS). Some progressive diseases are life-limiting.
The rate and timing of progressive disorders are different for each individual and disease. It can be hard to predict when and how skills may be lost. This affects when AAC may be offered or recommended. In the early stages the expected loss of speech may be overshadowed by all the other aspects of the diagnosis and the disease progression. Try to prioritize plans for how the person will communicate important decisions as the disease progresses. People who start AAC early in the disease often maintain communication skills much later. Learning to use AAC after the disease has advanced can be much more difficult, particularly in diseases that progress rapidly.
Planning for AAC early results in the best outcomes. During the early phase of a progressive disease, many people record their speech into AAC systems, even creating their own personalized digital voice. This early phase is a good time to create video or audio recordings of important messages for loved ones.
Look at access strategies
Consider alternate access methods. AAC should be selected with the disease prognosis in mind. If a person may lose function of their hands, then choosing an AAC system that can only work by touching a screen may not make sense. Instead, select an AAC system that can adapt access methods as physical skills change. For example, some devices can be used with finger tip selection, mouse control or switches, and eye gaze. Whilst the access method may change, it is beneficial if the AAC tool and appearance does not change.
Never too soon
AAC delayed may be communication denied. Some decisions around access to AAC come too late. There is a high rate of people with progressive life-limiting conditions who do not have access to AAC and also have no effective system of communication once their speech is lost. Early access to AAC can maximize the person’s choice and control, all the way up to deeply personal decisions at end-of-life.
4. Cognitive-communication disorders
Some speech disorders are caused by an underlying cognitive disability. This can co-occur with other acquired disorders, such as traumatic brain injury or following a stroke. Others occur on their own, such as dementia and Alzheimer’s. Cognitive-communication disorders are more common as we age.
The cognitive disability affects many aspects of language. The person may struggle to process the meaning of words, find the word they want to say, remember information, respond accurately, or follow directions.
Therapy not AAC
People with cognitive-communication disabilities often go without AAC. Like others with an acquired disorder, this population is far more likely to be offered therapy to restore speech skills than AAC to support communication. If the person cannot rely on speech to meet their communication needs, then AAC should be considered.
AAC tools that rely on visual supports may reduce the cognitive load and enhance the person’s involvement in important decisions. Consider communication boards or notebooks. These notebooks can include lists of the people, places, days/times, and other words. Photos, maps, drawings, and written lists can all be very helpful. These visuals build on the person’s ability to recognize the word they want when they see it. Consider alternatives for print
Many people with a cognitive-communication disorder struggle to make meaning from printed words. Typing words to communicate may be difficult for a person with cognitive-communication impairment. They may benefit from visual choice boards and menus, remnant books to help them recall events, visual symbols or line drawings to illustrate ideas, and familiar photographs from their life.
Best of both worlds
Always consider how residual speech can be used and maintained alongside AAC and other visual supports. No one needs to choose between speech or AAC. Both of them, together, can improve communication.
Consider highly personalized tools to support the person to reminisce and share stories. Photo albums or topic boards with photographs can set the scene for conversation. The person may need support to plan specific messages, such as stories they can share at their local craft group or when they visit grandchildren. These messages, and their continued contributions to activities around them increases the value of their social roles during this change of life.
Support the decision-making process
People with cognitive-communication disorders may need support and tools to be involved in important decisions about their life. Supported decision-making can enhance choice and control over their own lives.
The nature of the communication disability affects which AAC tools we need to consider. Loss of speech or absence of speech does not have to mean isolation or powerlessness. Consider how AAC can support other multimodal communication and residual speech so that every person can communicate what matters to them.
Links and references
- Blackstone et al. (2008) Introducing AAC & AT to Adults with Acquired Disabilities. [PDF]
- Beukelman, Fager and Ball, for AAC RERC. (2006) Use of AAC to Enhance Social Participation for Adults with Neurological Conditions (2006). [Slideshow Presentation]
- Beukelman, Ball, & Fager (2008): An AAC personnel framework: adults with acquired complex communication needs. Augmentative & Alternative Communication, 24(3): 255:67
- Beukelman, D.R., & Mirenda, P. (2013). Augmentative & Alternative Communication: Supporting children & adults with complex communication needs (4th ed.).Baltimore, Maryland: Paul H. Brookes Publishing Co.
- Lasker, Joanne. (2007). Aphasia and AAC: You Know More than You Think. [ASHA Presentation]
- McNaughton, D., Light, J. , Beukelman D.R., Klein, C., Nieder, D. & Nazareth G.(2019). Building capacity in AAC: A person-centred approach to supporting participation by people with complex communication needs. Augmentative and Alternative Communication, DOI: 10.1080/07434618.2018.1556731
- Parker, Robyn. (2013). Communication Books & Aphasia, PrAACtical AAC. [Blog post]
- The Aphasia Institute. (2020). Aphasia Participics Resources. [Website to create materials]