Language Matters: Down Syndrome Education Research Forum 2022

Down syndrome is a genetic condition which occurs in around 1 in 700 births and is usually caused by an extra chromosome (number 21). This condition is associated with developmental delays and often causes some form of intellectual disability. Fortunately, there is a growing community of people who are working to improve the lives of individuals living with Down syndrome and promote their inclusion in society. The annual Down Syndrome Research forum provides the opportunity for these people to showcase a variety of forward-thinking and exciting projects. From researchers in the academic field, to health practitioners and education professionals, this international conference covers a range of talks over two days. This year, we were given the chance to attend this inspiring forum, and one key theme that arose from these talks was that language and communication matters for all children – especially in the early years.

The impact of both nature and nurture on the learning environment

The conference opened with a keynote from Dr Hana and Dean D’Souza on the emerging phenotype in infants with Down syndrome. After an intriguing discussion of epigenetics and how the interaction of nature and nurture can promote adaptations to atypical constraints on development, they set the scene for the importance of investigating how children with Down syndrome learn and interact with their environment. A takeaway message was that, as with any child, their learning environment can play a huge role in their development and early interventions are a crucial part of this. This was echoed in a later talk by Professor Sue Buckley, who emphasised that early interventions are needed to support the learning of children with Down syndrome, and one primary area of early development that benefits from this is speech and language. As Sue pointed out, there is currently a lack of effective interventions available to families, however other talks at the conference provided a promising look at future work that could help to address this.

Effective communication does not just come from speech

A first example of this was a talk by Elaine Scougal who described her proposed PhD research on Augmentative and Alternative Communication (AAC)techniques for children with Down syndrome. AAC refers to methods of communicating other than speech (such as signing or using communication boards). Given that people with Down syndrome can struggle with verbal communication, AAC may reduce frustration and increase independence and inclusion for these individuals. However, Elaine highlighted that there is currently a lack of research into this form of communication within the Down syndrome population. She is aiming to address these current gaps by exploring real-world, functional uses of AAC. Recruitment starts in Spring 2022, so we are excited to see how this project develops!

A further talk which highlighted the importance of these alternative communication techniques was given by Dr Pauline Frizelle. Pauline highlighted that although many children with Down syndrome attend a mainstream primary school, they do not receive the expected inclusive education due to communication barriers. Many children with Down syndrome prefer to use non-verbal techniques such as signing; however many teachers have limited knowledge of this. She discussed the development of a Core Key Word Signing Vocabulary (known as the Lámh) in Ireland, to encourage communication between children with Down syndrome and their communication partners. Using several methodologies, including SLT and teacher interviews and observations, their study accumulated 140 key word signs, including a much higher number of verbs and adjectives than the current basic training provides. It will be interesting to see how this is implemented into schools in the future, to further promote the inclusion of children with Down Syndrome in the classroom.

This running theme of accessible communication for children with Down syndrome was also touched on in a series of talks given by Erica Ranzato, Karen Mcguigan, Dr Jo Van Herwegen, and Dr Katie Gilligan-Lee. These speakers gave some interesting insight into mathematical achievement in children with Down syndrome and strategies for supporting this. One key concept was the importance of understanding the language terms that are used in maths, and to consider how these can be made more accessible for children with Down syndrome. 

Parent involvement is a key factor in children with Down syndrome’s learning

Several talks also highlighted the importance of parent involvement in children’s early language and literacy learning. Another talk by Dr Pauline Frizelle highlighted how key word signing can have a positive impact on children with Down syndrome’s engagement in a shared book reading activity with their parents. In an intervention which compared embedded key word signing and non-signing shared book reading between children and their parents, the researchers found that the added signing increased both the parent and child’s involvement. Children in the intervention group produced more key word signs and had increased attention and participation levels, and parents in the intervention group increased the amount of language they used. This again indicates the benefits signing can have on communication and language development for children with Down syndrome.

The importance of parent-focused shared book reading activities was further underlined in a talk by Dr Kelly Burgoyne. Kelly has already demonstrated the positive impact that these types of interventions can have on the speech and language outcomes of typically developing children. The Parent and Children Together (PACT) project is a parent-delivered early language intervention created by Kelly and colleagues. It aims to provide parents with guidance, resources and training to help pre-school children’s early language development. The programme uses elements of shared book reading and other learning strategies which are known to boost language development. Kelly aims to now adapt this programme to the specific needs of children with Down syndrome and their parents through a pilot study, and then evaluate its feasibility for supporting early language and literacy learning in this population using a randomised control trial (RCT). More information about the original project can be found here.

These parent-focused interventions can also be beneficial to a younger population. This was highlighted by Professor Vesna Stojanovik and Dr Emma Pagnamenta in their talk on an early social intervention for children with Down syndrome under 36 months. Their aims were to use an RCT to assess the feasibility of the intervention, to see whether it was viable to progress to a full clinical trial. The intervention trained parents to use early communication skills with their child, including things like shared attention and following points. Although the trial is still ongoing, the early findings demonstrated a high follow-up rate and high acceptability of the intervention from both parents and SLTs. Furthermore, very preliminary results suggest that this intervention may benefit early language, as children in the intervention group appear to display higher receptive and expressive language scores compared to the control group. We look forward to hearing more about this in the future!

Make use of current practical resources!

In addition to the research-based talks, some speakers also highlighted practical resources that have been developed to help boost early language in children with Down syndrome and are readily available online. For example, the Down Syndrome Toolkit For Paediatric Speech and Language Therapists can be found here: The Down Syndrome Toolkit for Paediatric Speech and Language Therapists.

Barriers to inclusive learning

One final theme that came up the discrepancy between the theory of inclusive education and what is readily available for children with Down syndrome. Inclusion Educational Officer Chris Barnes provided an interesting reflection of the positives for being in a mainstream school for children with Down syndrome but also the inconsistencies regarding support available within these settings, which can be a source of frustration for parents. Children with Down syndrome can thrive in mainstream school but may require a tailored support system, often including intervention-based learning as described above. Based on Chris’s interviews with teachers, it appears that there is a wide range of experience, knowledge and training within the education system. This ranges from teachers with no knowledge or training for teaching pupils with intellectual disabilities, to those who have adequate training to provide inclusive education.

Fidelma Brady’s talk echoed these concerns from research into a parent’s perspective of inclusive education. She highlighted the importance of parental involvement in children’s learning, but also the lack of high-quality parent-teacher communication that seems to persist in many schools. Her current project looks to publish a communication diary, with visual and non-verbal resources, to encourage more of these conversations between parent, teacher and child at both primary and post-primary level (subject to funding!). A key message from both talks is that more exploration of the quality of education available for learners with Down syndrome is needed, in order for inclusion to be achieved for all.

Professor Sue Buckley summed up the issues that the Down syndrome community are currently facing when she described the administration of services as a ‘postcode lottery’. Clearly, there are still several areas to be addressed to help improve the language and learning outcomes of these children. However, the research and projects above reflect the efforts being made within the Down syndrome community to reach an inclusive education experience for all. It will be exciting to follow these projects over the next year and see what the DSE Research Forum 2023 has to offer!