This year the Down Syndrome Research Forum was held online for the first time – breaking geographical barriers and widening scope for participation. Over the two-days, attendees joined from 32 different countries. Research was presented from England, Ireland, Canada, USA, Russia, Japan, Qatar, Norway and Germany, representing the work of 105 researchers. Although we were not able to meet in person, the virtual format provided an opportunity to connect internationally. Researchers, practitioners and parents shared their perspectives and recent findings in Down syndrome research. A broad variety of topics, such as education, services, health, speech and language were covered. In this blog, I summarise the key points I took away from the forum:
In keeping with the success of the virtual event, there was a clear emphasis on the effectiveness of digital technology in supporting those with Down syndrome. Speech and language therapists shared ways in which they continued delivering services to families during the pandemic, resulting in a number of digital interventions. One example is “Teach me Too”, an online library of educational videos and learning resources for parents and teachers. Parents reported that the resources made them feel empowered, reduced their own anxiety and increased capacity and eagerness of their child to communicate. June Rogers and Nicola Enoch described the huge success of using a closed Facebook group “Positive About Down Syndrome (PADS)”. This has helped over 2,300 parents to toilet train their child. It has also created a community of parents able to support one-and-other, share stories and raise awareness of commonly experienced problems in Down syndrome, such as constipation. Adult support services have also been made available online. Lisa Martin and Aoife Gaffney presented how in Ireland, Zoom has allowed individuals with Down syndrome to connect with their peers and learn new skills. Representing research from our lab, the CoGDeV Lab, Su Morris gave a presentation on the prevalence and type of technology-use in the Down syndrome population. Her findings also highlighted that digital technology is important for developing friendships and communication. A Canadian educational program was shared by Isabella Simonato, which aims to improve adults with Down syndrome’s computer technology skills and encourage digital inclusion. Positive benefits were found regardless of initial skill level. Clearly digital technology is providing a means for both individuals with Down syndrome and their caregivers to become more empowered and autonomous in developing skills and relationships.
Natasha Krause presented research on teachers’ attitudes towards inclusion of children with Down syndrome within mainstream schools. Her findings showed that teachers were more positive about social inclusion than academic inclusion. Factors found to positively predict teacher’s attitudes towards inclusion in mainstream schools were teacher’s experience of inclusion of children with Down syndrome, and their confidence in understanding inclusive practice. Sarah Geiger shared the perspectives of children and young people with Down syndrome on school. She used visually structured interviews to reduce reliance on individual’s language ability. Through using images, children and young people shared that their class group and social position within the school was very important to them. Within a presentation from Russia, Tatyina Nechaeva and Alexander Borovykh advocated for recognising individuals with Down syndrome’s abilities in order to foster a society of inclusion and acceptance – a principle that has implications for ensuring higher attainment and better quality of life.
A symposium was held on autism and Down syndrome, which was a personal highlight of mine (I’m biased of course, as this is a focus of my PhD research!). Jo Moss, from the University of Surrey, gave an invited keynote presentation in which she discussed increased prevalence, atypical symptom presentation and the challenges associated with current diagnostic assessment. Wendy Uttley reinforced the complexity that comes with dual diagnosis in the context of meeting speech and language needs. Appreciation of these difficulties were also shared in a presentation by Jane Douglas on auditory processing deficits – describing cases of diagnostic overshadowing, in which hearing impairments associated with Down syndrome mask possible sensory processing differences indicative of autism. A brilliant success story was shared by Debbie Austin, who provided insight into her own family’s journey using Positive Behavioural Support with their daughter who has Down syndrome and autism. This approach allowed the family to identify how their daughter was using challenging behaviours to communicate. Debbie also shared the benefits of her daughter receiving an autism diagnosis early. Improved recognition of co-occurring autism in Down syndrome is evidently imperative for understanding individuals and appropriately meeting their needs.
The importance of encouraging individuals to express themselves was discussed further by Jane Mitchell. Her team’s positive wellbeing resources designed for people with Down syndrome received a lot of interest from attendees, and are free to access via Down Syndrome Association’s website: https://www.downs-syndrome.org.uk/product-category/publications/emotional-well-being/. Friendships are also clearly important for people with Down syndrome’s wellbeing. Dr Shelia Glenn highlighted that although many children with Down syndrome report having friends, these tend to be the people they see frequently (family, teachers, classmates) and that 40% of older adults experience loneliness. It is vital that opportunities to socialise are facilitated in adulthood. A good example of how this can be made possible is by supporting employment. Alison Thwaite described the “WorkFit” programme, which has supported 1,100 adults with Down syndrome to find employment. Alison emphasised the effectiveness of a workplace ‘buddy’ system for reducing stigmatisation; again, illustrating the benefits of inclusion. The programme offers a scalable, evidence-based model that allows adults with Down syndrome and their families to consider employment as realistic and feasible option. This is essential for ensuring adults with Down syndrome are living fulfilled lives.
Future directions and final thoughts
It was encouraging to see the amount of collaboration happening between researchers, practitioners and parents. Many of the current ways of working clearly have a future after the pandemic. Accessible digital support empowers individuals with Down syndrome and their parents. Sharing resources online may also help overcome some of the variations in practice experienced in different locations. Though technology is advancing our ability to connect and share information, Prof. Sue Buckley, Director of Down Syndrome Education International, made an excellent point: “I am really concerned that very often none of us are reaching the families who need the most help”. Not all parents have the resources to access online support or respond to social media recruitment, and we should remain mindful of these families. A priority among researchers and practitioners continues to be to establish standardised test batteries designed for those with Down syndrome, which are widely used in research and clinical practice so we can pull more data together. There is a particular gap, in which there is a need for measures appropriate for those with dual diagnoses, such as Down syndrome and autism. A common theme across talks was to encourage those with Down syndrome. As highlighted by Laura Mattie in her poster presentation: if researchers take a strengths-based approach when interpreting data, we can ensure individuals with Down syndrome’s capabilities are recognised. In the closing discussion, speakers agreed the perspectives of people with Down syndrome also hold a lot of value for advancing research and practice. In future, it would be great to see more representation of the voices and opinions of those with Down syndrome at these events.
Thank you to Down syndrome Education International for organising the event, and everyone else who was involved in the forum: the chairs, speakers and attendees. Each topic covered could have been made into an event in itself. I look forward to seeing the great things this community does in the future!
Written by Lauren Jenner