Toolkit: Communication and Interaction

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Due to Stargardt’s, the CYP may miss non-verbal cues such as gestures and facial expressions. Stargardt’s affects the macula part of the retina which is responsible for fine detail vision. This means that they can struggle with recognising faces, reading normal print and distance vision.

When addressing the CYP make sure to use their name first to ensure their attention, and support visual demonstrations with clear verbal commentary.

Finding friends in the playground could be difficult. Having an arranged designated area to meet, or having a “buddy” to help the CYP can be helpful.

Give the CYP a specific role in a discussion so they are aware of when they need to speak and when it’s their turn.

Teacher / TA to check understanding of the task given in a discreet way so not to draw attention to the student.

Group conversations can be challenging as they can’t pick up on social cues. So support to facilitate that can be useful.

For a lot of people with Stargardt’s, they may struggle with eye contact and use their peripheral vision to see. Therefore they may look like they are looking over someone’s shoulder or below their face when they are conversing with a person.

In their own words

It is important for your friends / school staff to know the limits of your vision. E.g. that you can’t see where they are as you enter a room, their facial expressions during conversations, where they are pointing etc. Ask them to use your name rather than smiling or waving, to agree to meet you in particular places at lunch and break times, to wear brightly coloured clothing if you are trying to follow them when out and about, and not to be offended when you seem to ignore them in busy places. You’re not being rude; your vision just misses subtleties.

Communication isn’t always easy, neither is seeking help. Sometimes self-advocacy can be a struggle depending on the situation.