As we wrap up National Speech‑Language‑Hearing Month, it’s a meaningful time to pause and reflect on how our understanding of communication continues to grow. This month is about more than bringing awareness, it’s about recognizing communication as a fundamental human right, one that deserves access, protection, and ongoing advocacy.
As part of that reflection, we want to take time to focus on ALS/MND, a condition that so clearly highlights both the vulnerability and resilience of human communication.
Our Clinical Training Specialist (CCC-SLP), Amanda, shares her perspective on how communication changes for people living with ALS/MND, and what remains the same. Drawing on her clinical experience, Amanda explores the role of AAC in supporting connection, identity and participation, offering practical insights into how communication can continue in meaningful ways throughout the progression of the condition.
Amanda Grabiner, Clinical Training Specialist
Amyotrophic lateral sclerosis (ALS) is a form of motor neuron disease (MND), a progressive neurodegenerative disorder that affects nerve cells in the brain and spinal cord. This leads to muscle weakness and can mean loss of control over voluntary movements like walking, talking, and breathing. So, it makes sense that often when people think about ALS/MND, they think about physical changes first. But one of the most significant changes people may experience is in communication.
As speech becomes more difficult, expressing thoughts, needs and personality may take more time or involve different tools. What stays the same is the need to connect, to participate, and to be understood. With the right support, communication can continue in meaningful and effective ways throughout the progression of ALS, as it should.
How can you support communication?
One way to better understand AAC is to notice how you already communicate.
Like we’ve discussed, throughout a single day, you might:
- Send a quick text instead of speaking.
- Use a gesture instead of words.
- Change your tone depending on who you’re talking to.
- Use a completely different voice when talking to your dog.
AAC builds on these same patterns. It simply provides additional ways to support communication when it becomes more difficult.
If you’re curious, take a few minutes to explore what AAC tools can actually do. Look up a speech-generating device, watch a short demo, or browse an AAC app.
Taking away some of the unknown can make it feel less intimidating- and you might be surprised by how much is possible.
Supporting communication in everyday life
Communication is a two-way street. Family members, caregivers, clinicians, and beyond, all of us play a role in supporting communication.
This might look like:
- Allowing extra time for responses.
- Learning how to use AAC tools alongside the individual.
- Being flexible in how conversations happen.
- Recognizing nonverbal communication and cues.
Small adjustments can have a significant impact on how accessible communication feels.
Supporting communication as it changes
This is where Augmentative and Alternative Communication (AAC) plays an important role. AAC includes a wide range of tools and strategies that can support or replace speech as needed. These range from non-electronic options like writing, gesture, or letter boards, to electronic solutions such as speech-generating devices accessed through touch, switches, or eye gaze.
AAC is not a single tool or a one-time decision. It is a flexible approach, a toolkit, that can change alongside a person’s needs. AAC builds on communication strategies we already use every day, ensuring the user can say what they want to say, when they want to say it.
For example, we might text instead of calling, gesture across a room, or change how we speak depending on who we are talking to. AAC takes those same ideas and makes them more intentional and ensures they are accessible.
For someone living with ALS/MND, this may mean using different tools at different times, or combining methods to support effective communication across environments, communication partners and as physical abilities change.
The goal is not to replace communication, but to maintain it clearly, consistently, and in a way that reflects the individual.
Maintaining voice and identity
Part of maintaining an individual’s identity through AAC, is preserving their voice. This means making sure not just that they can communicate, but how they sound when they do.
Voice is closely tied to identity. It carries tone, personality, and familiarity. Tools such as voice banking, message banking, and AI-generated voices can help support this.
- Voice banking allows someone to record their voice to create a personalized synthetic voice that can speak their messages aloud when they may no longer be able to.
- Message banking allows people to record meaningful words or phrases in their own voice that they can play with a hit of a button.
- AI voice tools can help create more natural, expressive speech.
These tools help preserve not just words, but how those words are expressed. For example, recording a message like “Do you want to go outside?” might seem simple, but the tone, emphasis and rhythm are part of what makes that message feel personal, especially perhaps, for a furry friend. And the phrase “I love you” can feel very different in a personal voice.
Earlier is helpful - it's rarely too late
For people with ALS/MND, starting conversations about AAC, voice banking, and message banking early can open the door to more possibilities. Earlier recordings may allow for stronger voice preservation and greater flexibility over time.
That said, it is rarely too late to explore what options remain. Some technologies now support voice repair or reconstruction using limited recordings, older samples, or smaller speech databases. Communication support continues to evolve, and so do the possibilities.
Communication continues
ALS/MND can change how communication looks, but it does not remove the need, or the ability, to communicate. AAC can reduce the impact of the changes it may bring by supporting connection, independence, and identity.
In that way, communication is never lost, it just might look a little bit different.