Session 2, Individual Papers: Adult studies and services
Tell me a story: Narrative language as a window into the pragmatic and syntactic abilities of adults with Down syndrome
Elisa Mattiauda1, Angela Hassiotis2, Alexandra Perovic1
- Division of Psychology and Language Sciences, UCL, London, UK
- Division of Psychiatry, UCL, London, UK
Correspondence: elisa.mattiauda.18@ucl.ac.uk
This research explores the language abilities of adults with Down syndrome (DS), a population particularly under-represented in language research. People with DS typically present a profile of relative strengths and weaknesses in language areas, characterized by relatively spared comprehension, and more vulnerable production abilities, particularly in areas of grammar. Pragmatic abilities are traditionally regarded as a strength, despite recent research pointing to disparities in conversational and narrative skills. Given the well-recognized risks for Alzheimer's disease and the associated cognitive ageing that adults with DS may experience, we believe language assessment past adolescence could provide a helpful tool for the identification of markers of cognitive change, in turn allowing for improved monitoring and prevention to support individuals with DS and their families throughout all stages of life. In our study, we investigated communication and cognitive abilities in a sample of individuals with DS aged 15-42 years, by direct assessment and informant questionnaires. All activities were delivered remotely via video call. In this talk, I will focus on discussing findings from the story retell activity in terms of macrostructural (story structure) and microstructural skills (grammar). Our initial analyses revealed that participants with DS produced fewer story structure components (e.g. Attempts, Goals, Outcomes) compared to a group of vocabulary-matched TD controls, despite producing narratives of similar length. This raises questions about linguistic aspects that may be driving this difference. We argue that participants with DS may selectively omit elements of the story that are reliant on inference (e.g., Goals or Internal States), likely as a result of syntactic weaknesses. Expression of such elements is in fact often reliant on complex grammatical structures that may be more difficult to produce. In the talk, I present our analysis of microstructural properties of the narratives and focus on discussing the relation between pragmatic and morphosyntactic abilities.
Down Syndrome Ireland's National Employment Programme
Author: Aoife Gaffney, Head of Employment – Down Syndrome Ireland, aoife@downsyndrome.ie
There is little recent data on the percentage of adults with Down syndrome in paid employment. Studies tend to measure employment figures for adults with intellectual disabilities, generally. However, it is clear that unemployment figures remain high. Jobs tend to be in a limited number of fields and long-term unpaid work is not unusual. (Kumin & Schoenbrodt, 2015).
Before we launched our National Employment Programme in 2018, we would have estimated that only a small percentage of people with Down syndrome were in paid employment in Ireland – pre-pandemic, we estimate employment levels were at just 6%. There is a large untapped resource of people who would love to work if given the chance. Down Syndrome Ireland's National Employment Programme breaks down barriers and works to provide people with Down syndrome access to meaningful employment opportunities.
Nowadays, in 2023 and as a result of the work we have been doing since 2018, we estimate that that number is now at 12% in employment. We believe our program has made a considerable difference to those numbers, but there is still lots of work to do to continue enriching the lives of people with Down syndrome in Ireland through lifelong learning, training and employment. We develop direct partnerships with employers in Ireland, to raise awareness, establish meaningful job roles, to provide training within organizations, and ongoing support.
Just as in the general working population, each adult with Down syndrome is an individual with their own particular temperament, interests and skills. Some workers will thrive in a forward-facing role, dealing with the public in settings such as hospitality or retail. Others will be more suited to an administrative position, requiring strong organizational and IT skills. Some will flourish in creative fields, while others will find that physical labour is a good fit. As with all workers, the goal is enabling the individual to find a position that suits their particular interests and skill set while providing the supports necessary for them to find success in this role.
Our Work Readiness Programme, along with our tailored Pre-Employment & Pre-Interview Training – which form part of our National Employment Programme – meet these challenges by exploring with students what it means to have a career, working with them to discover what sort of work would suit them, and equipping them with a range of skills that will serve them in the workplace.
Down Syndrome Ireland, Book Clubs for Adults with Down syndrome Pilot
Contact: Sinéad Flynn, Adult Education Officer, sinead@downsyndrome.ie
Down Syndrome Ireland (DSI) provides information, advice and support for students, families and teachers in education. It delivers teacher training nationwide in adult education. One of the areas covered in training is literacy development and maintenance for adults.
While the adult education programs are effective, it can be challenging to maintain literacy skills and interest once a program has ended. One of the ways to address this need for continuing literacy practice is though Book Clubs.
DSI has worked with the library service in Ireland to develop a pilot program of Book Clubs for adults with Down syndrome. To date, 3 book clubs (26 adults in total) are running, with people meeting monthly for an hour in their local library. The book club is facilitated by library staff members. Library staff receive training delivered by a DSI staff member and 2 adults with Down syndrome. 5 more libraries are in the process of setting up clubs.
The members of the book clubs, their families and library have given positive feedback on the program, highlighting an interest in reading, and the benefits of inclusion in their local community.
Profiling the meaningful, social and functional reading habits of young people and adults with Down syndrome.
Mary Jolley, University College Cork; Dr. Pauline Firzelle, University College Cork; Nicola Hart, Down Syndrome Ireland; and Dr.Ciara O'Toole, University College Cork
Contact: Mary Jolley 118439296@umail.ucc.ie
Despite the increased prevalence of Down syndrome in Ireland, there has been little investigation into every day reading habits of people with Down syndrome and indeed, the greater world. Therefore, there was a need for information to be gathered to establish preliminary data on what a cohort of participants with DS in Ireland read in their everyday lives. This informed the creation of the Reading Tool (FRT) that will be used in this study. Internal and face validity have been established. This was phase one of our research, the details of which were presented at last year's forum and currently in review to be published. This tool asks various questions surrounding the person with DS's reading habits. This tool was developed and approved by a cohort of individuals with DS and the researchers who facilitated it.
This presentation will present preliminary findings of the current phase two, which is ongoing. Phase 2 involves two parts. The initial part concerned a focus group where adults with Down syndrome told us what their priorities were in terms of our research aims. A voting system was used by the adults to shortlist and rank research questions, so that our research aims reflected the priorities of those with Down syndrome. Secondly, we moved to developing the tool into an online format in order to achieve an international profile of functional, social and meaningful reading habits of those with DS over the age of 16. Updates have been made to the FRT which reflect continuous feedback of researchers, staff facilitators and participatory researchers. These updates include additional items to the FRT checklist, updating images used and educational history questions.
