We recently co-produced a workbook with young people with Williams syndrome (WS) aged 5 to 15 years old about their education, named “My Own Williams Learning”. As part of this co-production we wanted to obtain the voice and opinion of young people with Williams syndrome about what Williams syndrome is, what children might be good at or struggling with and what support or good practice in school looks like. The booklet contains advice and activities to help children with WS understand their own learning but can also be used by parents and teachers. This booklet will be available soon via the Williams Syndrome Foundation website (https://williams-syndrome.org.uk/clinical-guidelines/).

As part of the co-production process of this booklet we reflected on best practice to elicit the voice of young people who have intellectual disabilities. Although most young people with Williams syndrome are very talkative, they have mild to moderate intellectual disabilities and their language abilities are rarely age appropriate. In addition, they often have difficulties with language comprehension, working memory difficulties and maintaining conversations. As such, the voice of children with WS has rarely been captured before and often parents are asked to report on their child’s behalf. In our latest research, we showed that only 7% of the Education Health and Care plans of 33 children with WS explicitly reported the child’s voice in section A. Most of the EHCP’s used third person discourse to describe the child’s wishes, strengths and difficulties (Palikara et al. in press).

Photo by Jason Rosewell on Unsplash

We worked with the children either one-to-one or with small groups of up to 3 children at one time (like a focus group). All of the sessions took place online due to COVID-19.

Below are some tips that can be used by teachers and parents (and researchers!) to elicit the voice of young people with WS.

• Reduce working memory load by asking simple short questions and use visual reminders. It often helps to repeat the question in the same way (not rephrase it).
• Provide waiting time of up to 10 seconds to allow them to process the question and to formulate answers.
• Use images to introduce topics. So for example, when asking what children might be good at or need help with, it might be helpful to have pictures of topics and issues at school: maths, reading, listening, writing but also toilet, hand washing, PE, going on the bus. There are existing pictures from visual time tables that might be handy here. If there are a lot of pictures to go through, it might help to do several rounds of sorting these with the child into piles of ‘I need help with this’, ‘ I am good at this’. So introduce the pictures one by one and ask the child to sort them.
• If working with a group of children, it helps to ask the questions in the same sequence each time to support predictability of their turn.
• Finger puppets could be used to keep participants’ attention on the screen, but only when attention is waning.
• Action songs to which the children could participate can help to provide a break from talking and listening. We used them approximately each fifteen minutes.

References

Palikara, O., Ashworth, M., Castro-Kemp, S., & Van Herwegen, J. (in press). All views my own? Portraying the voices of children with complex neurodevelopmental disorders in statutory documents