Stages of Communication Change in ALS: What SLPs, Clients, and Families Should Know
For individuals living with amyotrophic lateral sclerosis (ALS), communication changes are inevitable, but they do not mean connection has to stop. By planning proactively and using the right tools at the right time, people with ALS can continue to express themselves, maintain relationships, and advocate for their needs.
This blog guides you through the early, middle, and late stages of communication change in ALS, paired with recommended augmentative and alternative communication (AAC) strategies. Drawing on research by Roman et al. (2021), Petroi & Bock (2021), and others, we also offer practical tips for families and clinicians, and introduce how The Big Picture SLP can support this journey.
🟢 Early Stage: Preserving Natural Speech
In the early stages of ALS, individuals often retain natural speech, though they may begin to notice changes such as slurred words, decreased volume, or vocal fatigue.
Goals in this stage:
Maximize natural speech
Begin voice and message banking
Introduce AAC proactively, not reactively
AAC Strategies:
Voice Amplification Devices (for weak volume)
Speech Pacing Boards or Apps (to manage dysarthria)
Low-tech tools like alphabet boards for occasional support
Voice & Message Banking Tips:
This is the ideal window for voice preservation. As noted in the Big Picture SLP Voice & Message Banking Handout, we recommend clients begin:
Voice banking using tools like ModelTalker or Acapela.
Message banking for personal phrases, inside jokes, and meaningful sayings (using tools like MessageBanking.org).
This step ensures a more personalized synthetic voice in the future—one that reflects an individual's identity, not just their words.
🟡 Middle Stage: Transition to AAC
As speech intelligibility declines, communication partners may struggle to understand the individual even in quiet environments. Now is the time to transition to dedicated AAC systems.
Goals in this stage:
Ensure consistent, independent communication
Minimize frustration
Support emotional and social well-being
AAC Strategies:
Speech-Generating Devices (SGDs) with custom settings, accessible via touch, switch scanning, or eye tracking
Phrase banks and quick messages for frequent needs
Partner-assisted scanning if fine motor decline occurs
Roman et al. (2021) highlight the importance of early funding and access to SGDs—delays can mean critical windows are missed. Medicare often covers SGDs, but SLPs and families must initiate paperwork before communication is lost.
Real-World Insight:
Petroi & Bock (2021) describe a client whose communication suffered because AAC was introduced after speech became unintelligible. The lesson? Plan early and train gradually.
🔴 Late Stage: Maintaining Connection
In the late stage of ALS, individuals may lose all voluntary motor control, including hand and head movement. However, communication remains possible with the proper support.
Goals in this stage:
Sustain autonomy
Enable medical decision-making
Support emotional closeness
AAC Strategies:
Eye-tracking devices or brain-computer interfaces (BCIs)
Yes/no eye blinks or eye gaze boards
Caregiver training in interpreting nonverbal cues and device support
As Subrahmaniyan et al. (2013) emphasized, AAC design must match a user’s daily context and support roles, not just physical function. A system is only helpful if it fits the individual’s life and preferences.
💬 How The Big Picture SLP Supports ALS Clients
At The Big Picture Speech-Language Services, we provide customized communication planning for people living with ALS, starting from the first signs of change.
Our services include:
Voice and message banking support and coaching
AAC device trials and training
Caregiver and partner education
Funding and paperwork guidance for SGD approval
Ongoing modifications as physical access needs evolve
We work in collaboration with medical teams, family members, and ALS organizations to ensure that the person’s voice remains at the center of their care.
🧠 Final Thoughts: Planning Empowers Communication
ALS is progressive, but communication doesn’t have to disappear. With the right strategies and support in place, individuals can maintain their autonomy, relationships, and joy.
Whether you're an SLP, a family member, or someone navigating ALS yourself, start planning early. Your future self will thank you.
📌 Get Started Today
Visit bigpicturespeechlanguageservices.com to schedule a consultation or download our Voice & Message Banking Handout.
Also check out:
References
Roman, C., et al. (2021). Expanding Availability of SGDs
Petroi, D., & Bock, K. (2021). ALS Case Report: Real-Time AAC Decision Making
Subrahmaniyan, N. et al. (2013). Personas in AAC Design for Progressive Conditions
Big Picture SLP Voice & Message Banking Handout
I Am ALS and ALS.org Websites