Changes with Age

Changes with Age in Cornelia de Lange Syndrome

A number of changes with age have been described in individuals with Cornelia de Lange syndrome.

A study conducted in 2021, suggested a link between autism characteristics and anxiety in individuals with CdLS, which seems to increase as they get older. Specifically, difficulties with uncertainty and changes in routine can be major triggers for anxiety. To cope with these challenges, some individuals with CdLS may develop a strong preference for sameness and routines, which helps them to manage the mental demands of daily life.

It is important to remember that every person with CdLS is unique, and this does not mean your child will definitely show increased anxiety or autism traits as they age. However, being aware of these can help parents/carers, and healthcare professionals, detect them early and provide the support needed to ensure the person with Cornelia de Lange syndrome has the best quality of life.

A skills chart is available at the CdLS Foundation website and you can download an accessible summary about changes with age below:

Changes with Age in People with Cornelia de Lange syndrome

Understanding the changes that people with CdLS go through as they grow is important for us to support them better. By recognising these challenges, we can create appropriate assessments and help them based on their age, making sure they receive personalised care, thus improving their overall health and quality of life.