Focusing on young people with Chromosomal Neurodevelopmental Conditions

How many young people with chromosomal neurodevelopmental conditions are struggling with their mental health, and has this changed the past few years?

One in seven 10–19-year-olds experience mental health conditions (WHO, 2021) and recent figures report that mental health conditions are on the rise, especially for those with chromosomal neurodevelopmental conditions (NDCs) such as Down syndrome and Williams syndrome. Down Syndrome is a genetic chromosomal disorder, and it is associated with delayed cognitive development (e.g. delayed speech production; poor short-term memory) and a complex clinical profile (e.g. prone to medical conditions and maladaptive behaviours). Similarly, Williams Syndrome is a genetic chromosomal disorder with uneven cognitive (e.g. weak visuo-spatial abilities; executive functioning but strong language abilities) and clinical profiles (e.g. predisposed to heightened anxiety and medical conditions).

The global Covid-19 pandemic has caused unprecedented disruptions to education, healthcare, social life and our way of living over the past three years. These disruptions have caused an increased prevalence of anxiety across the world (WHO, 2022). On the national level, young people with NDCs experienced increased anxiety and worries compared to their typically developing siblings during the first lockdown (Sideropoulos et al., 2021). This, of course, can be expected – most young people with NDCs thrive when their routine is structured.

While such data highlight key mental health differences between young people with NDCs and their typically developing siblings, we also need to identify the similarities and differences amongst those with different NDCs, to see if similar or different types of support should be provided. For example, young people with Down Syndrome appear to have experienced lower anxiety compared to young people with other NDCs during the third lockdown in the UK; yet those with Down Syndrome seemed to worry more about social-related aspects on their life (Sideropoulos et al., 2022). Similarly, parents of young people with Down Syndrome reported that they felt their child was missing out on after-school activities which subsequently had a moderate-large impact on their child and their social skills during the same time (Nixon et al., 2022).

Preliminary outcomes from upcoming work that studied primary to secondary school transitions for young people with an NDC, and their adjustment to the new provision during the pandemic, also highlights the impact of school transition/changes on anxiety and wellbeing. It appears that young people with Williams Syndrome scored higher on anxiety compared to those with Down Syndrome over time (Sideropoulos et al., 2022 in review). Such findings demonstrate the mental health trajectories of young people with NDCs, and how changes to their structured routines can greatly impact their mental health and wellbeing due to their proneness on mental health conditions.

A need for accessible and collaborative support

By taking into account the clinical anxiety levels of young people with Down Syndrome and Williams Syndrome, we can confidently argue that disruptions to daily and social life – as well as to structured routines caused by uncertain events, such as the pandemic and school transitions – can be stressful and cause rises in anxiety levels. Hence, providing better, but also accessible support systems for young people with NDCs and their families could only benefit them.

We have to understand the differences between these populations, but also within these population so as practitioners are able to support these young people. In particular, our research has shown that:

• Young people with Down Syndrome experience less anxiety compared to those with Williams Syndrome. However, there are cases of young people with Down Syndrome that experience clinical levels of anxiety and these individuals will need appropriate support too. The worries of those with Down Syndrome often relate to social aspects, and these must be taken into account in order to support them appropriately.

• Young people with Williams Syndrome are more prone to experience heightened anxiety and should be a high priority for mental health / wellbeing support, especially during times of crises that can cause disruption to their routines, e.g, school transitions.

• Empowering and supporting families and their children through different streams (e.g. schools, financially, psychologically) is also key for better mental health / wellbeing.

• Further studies are required to examine the huge individual variability in mental health issues, especially anxiety, in these populations and an increased awareness of the specific needs of young people with NDCs (Palikara et al., 2018) as well as access to specialist support (e.g., occupational therapy, Van Herwegen, 2018) is required.

Our website, Moving to Secondary School, also provides key information on primary to secondary school transitions for young people with NDCs. Through our work we have put on the forefront the views of families, children with a NDC, and education professionals (e.g. teachers). They play a vital role in supporting young people with NDCs in schools, yet there is a lack of awareness, and training, on how to best support those young people during times of transition.

First, professionals should engage in training activities and learn more about the different NDCs, including being aware of neuromyths about each NDC.

Second, there should be a clear communication between parents/carers, the old and new school, as well as the young person with NDC. This can be one through weekly short Zoom meetings, or regular visits to the new school; but also through the co-production of a transition book that addresses the worries and anxiety of the young person.

Finally, parents should be informed about what support their child is receiving at school in relation to their wellbeing, how they can further support their child at home, and if needed how access to specialist support for their child can be obtained.

All the above recommendations can be accomplished at several levels. Governments should financially support more special education provisions – e.g. by providing specialists support such as Educational Psychologists); and we must improve the communication between parents and the school about the type of support children with NDC are receiving.

• Vassilis Sideropoulos is a Senior Research Technician in Psychology in the Department of Psychology & Human Development at IOE, UCL's Faculty of Education and Society. His research focuses on the mental health of young people with neurodevelopmental conditions; higher education students; typically developing individuals and on addictive behaviours and health.

 

References

WHO. (2021). Adolescent Mental Health.

WHO. (2022). COVID-19 pandemic triggers 25% increase in prevalence of anxiety and depression worldwide.

Sideropoulos, V., Dukes, D., Hanley, M., Palikara, O., Rhodes, S., Riby, D. M., ... & Van Herwegen, J. (2021). The impact of COVID-19 on anxiety and worries for families of individuals with special education needs and disabilities in the UK. Journal of autism and developmental disorders, 52(6), 2656-2669.

Sideropoulos, V., Kye, H., Dukes, D., Samson, A. C., Palikara, O., & Van Herwegen, J. (2022). Anxiety and Worries of Individuals with Down Syndrome During the COVID-19 Pandemic: A Comparative Study in the UK. Journal of autism and developmental disorders, 1-16.                                        

Nixon, L., de la Fuente, G. M., Costanzo, F., Sideropoulos, V., Van Herwegen, J., & Lakhanpaul, M. (2022). The impact of the pandemic on children under 11 with Down Syndrome.

Palikara, O., Ashworth, M., & Van Herwegen, J. (2018). Addressing the educational needs of children with Williams syndrome: a rather neglected area of research?. Journal of Autism and Developmental Disorders, 48(9), 3256-3259.

Sideropoulos, V., Palikara, O., Burchell, E., Ashworth, M., & Van Herwegen, J. (2022). Anxiety During Transition from Primary to Secondary Schools in Children with Neurodevelopmental Disorders: A Cross-syndrome Comparison.

Van Herwegen, J., Ashworth, M., & Palikara, O. (2018). Parental views on special educational needs provision: Cross-syndrome comparisons in Williams Syndrome, Down Syndrome, and Autism Spectrum Disorders. Research in developmental disabilities, 80, 102-111.