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Kids awaiting neurodivergent diagnoses need more help

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Many neurodivergent children across the UK are waiting for up to three years for assessment and diagnosis. More must be done to provide early support for these children.

Neurodivergent conditions, such as Autism, ADHD (Attention Deficit Hyperactivity Disorder) and Dyspraxia, affect one in five children in the UK. These children commonly show signs that they think differently from their peers, which include difficulties with memory, attention, planning and controlling responses.

This can create a host of challenges in everyday life, such as difficulty in engaging in learning and participating fully in school activities. It can also affect their relationships with peers and teachers at school, and with their siblings and parents at home.

These children are also at a high risk of developing mental health difficulties, which is a markedly different experience to children without these conditions.

Many of these children are waiting for up to three years for assessment and diagnosis. Although the Government is acutely aware of the need to help these young people during this time, they remain largely unsupported while on lengthy waiting lists for assessment.

It is vital to understand and support neurodivergent children from the moment when difficulties are first recognised to ensure optimal developmental outcomes in learning, relationships and wellbeing.

Empowering children

Portrait of Dr Sinead Rhodes
Dr Sinead Rhodes

One such approach is EPIC (Edinburgh Psychoeducation Intervention for Children and Young People). EPIC focuses on ‘psychoeducation’, which involves working with the child to identify their strengths and difficulties. Parents and teachers then use this knowledge to build an understanding of their specific needs.

EPIC aims to empower the child with an understanding of the specific set of thinking difficulties they have and upskill them with a toolkit of strategies they can draw on.

The approach pairs psychoeducation with game and activity-based strategies to optimise thinking, learning and wellbeing.

Strategies can use techniques that facilitate optimal memory, attention and planning skills. This can include the use of mental imagery, such as creating a visual image to enhance memory, rehearsal or repetition of information.

Taking part in an EPIC programme or self-use of EPIC activities does not require a diagnosis. Indeed, my current research is focused on developing a pre-diagnostic service in the form of a ‘self-delivery with support’ programme to ensure parents and teachers feel empowered to work with the child and receive support from an expert team. This type of service is also designed to be cost effective given huge constraints on NHS and local authority budgets.

Challenging stigma

More broadly, it is vital that neurodiversity is understood and supported by everyone in society. A lack of accurate knowledge of these conditions can fuel stigma and misunderstandings, which affects neurodivergent children in every day life.

To help with this situation, in 2013, I launched ‘Research the Headlines’, a blog where academics highlight research in the media in a format accessible to the general public. My posts focus on neurodevelopmental research and aim to help the public have accurate and reliable up-to-date information about these conditions.

This work, part of a Young Academy of Scotland project, has been extended to children through media literacy workshops in schools. A national primary school competition called ‘Rewrite the Headlines’ delivered workshops in 98 schools across Scotland. Children were taught how to assess what they read in social and print media, helping them become critical consumers of evidence presented to them.

At the heart of my research and public engagement activities is a desire to empower children with the skills to understand and appraise information, whether that is about neurodiversity or assessing evidence more generally in everyday life.

Although neurodivergent children are faced with long waiting lists for assessment, there is much we can do in society to help. Research that places the views and needs of neurodivergent children at the centre of decisions and practices can help inform ways to better understand and support them.

Tam Dalyell Prize

Dr Rhodes is the winner of the 2022 Tam Dalyell Prize for Excellence in Engaging the Public with Science.  She gave her Tam Dalyell Prize lecture on Sunday 2 April 2023 at the University of Edinburgh’s Playfair Library.