Early Pathways to Independence in numeracy for Children with GEnetic Syndromes - EPIC GENS

Basic numeracy is key to independent living, from tasks as important as understanding money and managing one's financial budget or getting to the bus stop on time, to employment opportunities. Our current understanding of numeracy is drawn from neurotypical samples; these models do not take into account neurodiversity. In other words, current models foster Neurotypical Education that Renounces Diversity (NERD).

Leaving neurodivergent children understudied is highly problematic: it counters the Government's inclusivity policy, and it limits the benefits of interventions because we cannot improve what we do not understand. A second problem is that we do not understand the interplay between multiple contributors to numeracy (e.g., language, spatial and executive skills), because current studies have focused on them in isolation.

Finally, theories of early numeracy have not incorporated an understanding of environmental contributions (e.g., informal instruction, exposure to and engagement with mathematics-related activities at home and school). We will address these three gaps by tracing early numeracy pathways specifically for children who receive early genetic diagnoses that put them at high risk for low numeracy outcomes.

Our ultimate goal is to generate the necessary evidence base on child- and environment-level profiles and predictors of early numeracy for neurodivergent children, so that numeracy can be understood, optimized and later independence fostered for all young children.

Children with genetic syndromes identified early in life provide a highly powerful model of pathways to difficulties and successes. These pathways can be studied prospectively from diagnosis and offer an invaluable window of opportunity for early intervention. From an equity and diversity perspective, these children are also a vulnerable category that currently does not receive scientific attention on par with other disadvantaged groups.

Our past and ongoing participatory work highlights the need to understand early pathways to independence in numeracy for these children in particular, given the high risk they suffer later in terms of financial independence if they cannot reach basic numeracy competencies.

For this project, we will focus on three genetic syndromes with Special Educational Needs and Disability (SEND): fragile X syndrome, FXS (most common genetically inherited form of intellectual disability), Down syndrome, DS (most common genetic syndrome) and Williams syndrome, WS (a rarer syndrome, however identifiable at birth). We chose these groups because of their differing but also overlapping risk profiles and much earlier diagnosis than autism or ADHD (allowing research to commence from or before primary school entry), their high reported risk of later numeracy failures, and participatory science efforts highlighting that understanding the foundations of numeracy is key to later independence.

Influenced more broadly by our Open and Participatory Science approach, we will address the following specific questions:

1. What are the characteristics of early numeracy for children with early genetic diagnoses across the primary school years, and how do these characteristics relate to their cognitive strengths and weaknesses across language, executive, spatial and motor skills?

2. What are the common characteristics of school environments that support or hinder early numeracy in children with genetic syndromes? To what extent are common vs. unique environmental adaptations for each of our target groups sufficient?

3. How do these cognitive and environmental factors predict risk and successes in primary school numeracy a year later for all these children?

The long-term impact of the project will be both a more inclusive understanding of early numeracy and the evidence needed to design better tailored learning opportunities for neurodivergent children.