A child with Down syndrome often understands far more than they can say, and grammar is usually their weakest point. AAC (augmentative and alternative communication) helps at every age, from early childhood to adult life. Here is what the research says, and what we have learnt with Pablo.

Who is Pablo?

Pablo is 21, he has Down syndrome, he is non-speaking and he communicates with symbols. He is the younger brother of Alex and Adrianos, the two co-founders of Pictalk.

For a long time, Pablo used a paper symbol book. It helped him, but it also held him back: whatever wasn’t in it didn’t exist for him. In 2020, during lockdown, we spent much more time together and discovered his real needs: he had far more to say than his book allowed.

His brothers then built a digital tool for him. It became Pictalk, then Pictalk Buddy, whose default voice is called ‘Pablo’. Today, Pablo buys his baguette on his own with Pictalk: going in, making himself understood by someone who doesn’t know him, paying, leaving. We took Pablo to the bakery to buy bread from the very first test phases of Pictalk, so that he could see the new abilities this tool unlocked. He loved it: you could read on his face the joy of being understood and of being in the spotlight.

‘Finding a good communication system is not enough for the child or young person to take hold of it and communicate. Nothing is miraculous: it takes commitment and time, especially at the start. You will have to model […]. But it’s worth it!’

Pablo’s mother, in a testimony published for the International Day of Persons with Disabilities

What communication profile is common in Down syndrome?

Beukelman and Light (2020), the reference textbook on AAC, describe a common profile, although every person is different:

• Understanding is ahead of expression.
• Vocabulary and social use are strengths.
• Grammar is more fragile: building a sentence, making words agree, using verb endings.
• Hearing can fluctuate, which makes speech harder to understand: remember to have it checked.
• Their speech is hard for strangers to understand, even when the family understands it well.

That is the case for Pablo: he understands very well, but he says only a few single syllables, which only his close family understand. Pablo is rather a loner and likes to stay on the sofa with his phone. Time and again, we were surprised when he joined in spontaneously in conversations we were having among ourselves, proof that he follows the talk around him. His reactions were to the point: he would remind us of specific moments when we were talking about a trip, for example.

Should you wait for them to talk?

No. AAC does not stop speech from developing, it often helps it. In young children with Down syndrome, activity photos came first, then signs, then speech, which took over (Light and Drager, 2012). See AAC and speech.

How does the role of AAC change with age?

1. Early childhood: signs, photos and symbols are the main way of expressing themselves.
2. As speech develops: AAC is used to clarify, by showing the symbol for a word that wasn’t understood or by announcing the topic first (Hanson et al., 2004).
3. In adulthood: it often becomes necessary again with people they don’t know (the baker, a new doctor, an employer), whose ears are not used to their speech.
4. Later on: the risk of dementia is higher in adults with Down syndrome. The authors recommend preparing memory aids, such as life books with photos.

So never ‘stop’ AAC too early. See also Adolescence and adulthood.

How can you help them build sentences?

The tool must allow sentences, not just naming objects. In Buddy, for example, ‘he want cake’ automatically becomes ‘he wants cake’. But above all, it is the way the people around them model that drives progress:

• speak in full, correct sentences, even when showing only two or three symbols (Fey, 2008);
• repeat the message and expand it: ‘want cake’ becomes, shown on the tool, ‘you want some cake’;
• wait after the first symbol, instead of finishing the sentence for them.

This modelling helps them move from one symbol to two or three per message (Binger and Light, 2007). See Model, wait, respond.

For Pablo, his mother organised digital books by topic (food, activities, shopping…), inspired by PODD. That is where he learnt to combine symbols, and the books served as his dictionary: he has memorised hundreds of words, recognises words by sight and writes messages that he has read aloud by the device or sends from his smartphone. Pablo loves talking about his travels, and about food too: that is how he started making sentences, to talk about a place, or to tell us not only what he wanted to eat but also what he had eaten at school.

How should the symbols be arranged?

For people with Down syndrome, symbols presented in small groups separated by empty spaces were found more easily than in a full, uniform grid (Wilkinson et al., 2017). In the Essential, Springboard and Horizon vocabularies, some cells are hidden at first and are revealed as the person progresses, without the words already learnt changing place.

Start with their own words (names, dishes, favourite activities) and a few useful little words such as ‘more’ or ‘all done’ (Laubscher and Light, 2018). See Which words to put in the tool and Organising the grid.

How can you help them find their way in time?

Pablo first had a symbol timetable to anticipate his day and reduce anxiety, then a weekly planner, then a monthly calendar: today he finds his way in time very well. Visual sequences break long tasks down into steps (‘getting ready in the morning’, ‘packing a suitcase’). His life book, with photos from the weekend, lets him tell us what he did: it is also his future book of memories. See Visual supports: schedule, sequences, timer.

Frequently asked questions

At what age should you start?

As early as possible: Beukelman and Light recommend starting in early childhood, with signs and photos. There is no prerequisite of age or level.

Signs or symbols?

The two can go together. Pablo still uses Makaton signs for simple requests, and his smartphone app most of the time.

Pictalk Buddy brings together AAC boards, a visual schedule, guided sequences and notebooks, with the same symbols, on Android, iOS, the web and the watch. A pay-what-you-want app, developed by a non-profit association. Discover Buddy

Sources

• Beukelman, D. R., & Light, J. C., 2020, Augmentative & Alternative Communication (5th ed.), Paul H. Brookes, chapter 9.
• Studies cited from Beukelman & Light (2020): Light & Drager (2012); Hanson et al. (2004); Fey (2008); Binger & Light (2007); Wilkinson et al. (2017); Laubscher & Light (2018).