New resources for parents and teachers of neurodivergent children

Designed for autistic children and those who have ADHD, dyspraxia, or were born prematurely, the EPIC Think Learn toolkit can be used from the point a difficulty is noticed – whether the child has an existing diagnosis or is on a waiting list for assessment. Currently, the authors say, ‘depending on where you live, the waiting time to be diagnosed for many of these conditions can be up to five years’. In Scotland, in 2022, three Health Boards recorded waiting times of over three years.

Neurodevelopmental psychologist and EPIC founder Dr Sinead Rhodes, of the University of Edinburgh’s Centre for Clinical Brain Sciences, has researched neurodivergence in children for 28 years, and co-developed these resources with those they aim to support: children, parents, teachers and clinicians. She said: “Having conducted research with neurodivergent children for over 25 years, I have witnessed the waiting times get longer and longer and parents and teachers feeling unsupported. Many myths exist about these conditions, such as that they present in isolation when, in fact, meeting the criteria for more than one condition is the norm rather than the exception.

“I see the need for parents and teachers to learn about up-to-date research on neurodivergence, and to receive that information in a way that they can implement straight away with the children in their care.”

Geraldine Mynors founded ADHD Parent Support West Glasgow in 2014, when she couldn’t find a support network for herself and her son, who was diagnosed with ADHD aged 7. The organisation now supports 600 families. She said: “EPIC is the first set of resources I’ve seen that is actively trying to train the brain to get better. Most resources focus on managing behaviour, but EPIC has activities that help children to stop themselves blurting out something in class, for example, or that break down tasks for better outcomes.

“In Glasgow, parents can wait three or four years for a neurodevelopmental assessment, with no idea how to proceed. EPIC is a partial solution for this, while our Child and Adolescent Mental Health Services struggle to cope with demand. EPIC is also a brilliant resource for schools, helping teachers and children to find strategies rather than just telling children to sit still, which doesn’t work.”

With public engagement specialist and neuroscientist Dr Iona Beange on board, and the support of Edinburgh Innovations, the University of Edinburgh’s commercialisation service, EPIC Think Learn has now spun out into a Community Interest Company, with an online platform of materials that are being constantly revised.

Mother Jenna Matthews, 43, from Bromley in Kent, gave birth to her son Wilco, now 8, at just 25 weeks. It took two years for him to be diagnosed with dyspraxia and inattentive ADHD. She said: “I discovered the EPIC resources last year, and if I had found them earlier,  wouldn’t have had to spend four years trying to find the same information. EPIC has everything in the same place and is so concrete and clear. It focusses on difficulties your child might have, includes information around processing emotions, and has a very simple way of helping you understand the different conditions. The language is about empowering the child, and really allows you to sit down with them and talk about their strengths, as well as what they struggle with. It gives you confidence and knowledge that helps you advocate for your child and, importantly, helps them advocate for themselves.

EPIC has launched with a full online platform for parents, including webinars about how to use the resources. Teacher services such as webinars and in-service training options are also available, with a full teaching platform to come online next year. Webinars for clinicians will be available from autumn 2024.

EPIC has also received support from Waterloo Foundation, the ARC Accelerator and social enterprise funders Firstport and CEIS.

Pictured (left to right) are Drs Sinead Rhodes and Iona Beange.