Successful use of an eye gaze AAC communication board by a young adult with advanced Sanfilippo Syndrome (MPS IIIA): Case report
A simple eye-gaze board can restore functional vocabulary in adults who have lost both speech and hand use.
01Research in Context
What this study did
Brennan et al. (2024) worked with one young adult who has late-stage Sanfilippo Syndrome. The man had lost speech and hand control. The team built a simple board with pictures and words. He picked items by looking at them.
The study lasted several weeks. Family and staff recorded how often the man used the board. They counted eye-gaze choices and caregiver replies.
What they found
Eye-gaze choices rose quickly. The man asked for food, TV shows, and walks. Caregivers answered more often because they could see what he wanted.
His vocabulary use grew from zero to many items each day. The board stayed easy to fix and cheap to replace.
How this fits with other research
Leaf et al. (2012) pooled 24 single-case studies on aided AAC. They found large gains for autistic children using PECS or speech devices. Brennan’s case shows the same benefit can reach adults with other rare disorders.
Jiang et al. (2026) gave AAC training to parents of autistic preschoolers. Kids later used AAC for joint attention, not just requests. Brennan’s adult also moved beyond requests, proving the leap is possible even after skills regress.
Porter et al. (2008) taught an adult with ID to use a speech device. Both studies show age should not block AAC. One used high tech, the other low tech. Each worked when matched to the user’s skills.
Why it matters
If you serve adults who have lost speech and fine motor skills, try a paper eye-gaze board first. It needs no battery, costs little, and can be made in minutes. Start with five highly preferred items. Model looking and naming. Track eye shifts and immediate caregiver replies. This single case shows even late-stage regression can turn into clear, functional communication.
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02At a glance
03Original abstract
Sanfilippo syndrome (Mucopolysaccharidosis Type III or MPS III) is a family of rare, lysosomal disorders characterized by progressive cognitive and motor deterioration. Even though individuals with MPS III present with complex communication needs, research regarding augmentative and alternative communication (AAC) in this population is scarce. While life expectancy for individuals with MPS IIIA typically does not exceed 20 years of age, this case report involves a 22-year-old adult with postregression MPS IIIA. Prior to this study, the participant could not communicate using speech and only responded to yes/no questions using eye blink responses. The participant was given a low-tech AAC system utilizing eye gaze so that she could respond to a variety of caregiver questions and take conversational turns. The following communication outcomes were measured during each session in which caregivers used the AAC system: number of eye gaze responses, total number of responses (using any means), the percent of responses to questions asked, and the total count of expressive vocabulary words available to the participant with the AAC system. Increases were observed in the number of eye gaze responses per session and in the expressive vocabulary accessible via the eye gaze board. A higher percentage of responses given caregiver questions was noted for the intervention sessions (71%) compared to the baseline sessions (55%). There were also qualitative changes characterized by the types of questions the participant could respond to during conversational exchanges. Despite the progression of MPS IIIA, the results suggest that use of the eye gaze board resulted in quantitative and qualitative changes in functional communication. This case report provides preliminary evidence that AAC can improve communication in a young adult with postregression MPS IIIA.
Therapeutic Advances in Rare Disease, 2024 · doi:10.1177/26330040241275672