Professor Sinead Rhodes and Dr Iona Beange in the University’s Institute for Neurosciences and Cardiovascular Research cofounded EPIC Think Learn, an online resources platform to support neurodivergent children and their parents, teachers and clinicians.
Backed by more than 25 years of evidence-based research, the booklets, webinars and blogs offer a tailored toolkit for children.
Resources for neurodivergent children
Some waiting lists for neurodevelopmental assessments can be more than three years, five in certain areas. This means children with ADHD, who are autistic or have dyspraxia, and their parents, may feel left in limbo.
The online platform – EPIC Think Learn – fills this gap by offering parents of neurodivergent children ways to understand how their child’s brain works. The resources also offer teachers and clinicians ways to see things from the child’s point of view.
EPIC Think Learn offers two categories of resources in written, audio and video formats. The Understanding resources help identify a child’s strengths and difficulties. The Strategy resources include a range of tools to optimise thinking skills, learning and wellbeing.
Reaching more neurodivergent children
With the support of Edinburgh Innovations (EI), the University’s commercialisation service, EPIC Think Learn was able to spin out in 2023 to become a community interest company. Since then, its online materials have expanded, and the number of visitors to the website has also increased as a result. As well as its free resources, an online membership option offers additional content for regular users.
This includes Q&A and facilitated peer support sessions as well as regular expert webinars for parents. The company also provides in-service training for teachers and webinars focused on summarising the latest research for clinicians.
As the website passes 10,000 downloads and 150 parent subscribers, Professor Rhodes discusses the EPIC Think Learn team’s drive to improve support for neurodivergent children.
Tell us about your role as a researcher in the field of neurodivergent children
“I do research mainly on the areas that impact children with neurodevelopmental conditions such as autism, ADHD and dyspraxia, so for example their thinking skills and how they organise information in their minds – what we call ‘executive functions’.
“Everybody has executive functions; it involves how we think and are flexible in our thinking and responses. I also look at social functioning and aspects to do with underlying mental health, such as masking in neurodivergence, and depression and anxiety, as these children have a one in two chance of developing mental health issues.”
How do you engage people in your research?
“I’m also the engagement lead for the University’s new Institute for Neuroscience and Cardiovascular Research. I routinely engage people with the findings of our research studies. I am also experienced in innovation where I’ve scaled that engagement and spun out to reach more people.
“A huge part of my role is doing research but also acting as a role model and identifying barriers, opportunities and training needs, and representing engagement within the University.”
What inspired you to focus your research on support for neurodivergent children
“When I did my undergraduate degree, it was the child development aspect that I enjoyed the most. Cognition – our memory and how we organise information in our minds – is the kind of thing that neurodivergent kids have a lot of difficulties with. After my master’s, a PhD was advertised looking at cognition and treatment in ADHD in children and the topic really interested me.
“I’ve always engaged with the public. I’ve gone to schools and given talks, and regularly attended clinician meetings to talk to them about our latest research findings.”
Why did you decide to set up EPIC Think Learn?
“In 2021 we got a small amount of funding through EI – this was an Institutional Translational Partnership Award. We had carried out this research project in the form of developing an intervention called EPIC (Edinburgh Psychoeducation Intervention for Children and young people) and developed manuals. These went online and suddenly everyone was downloading them. They were coproduced with parents and teachers, and we had favourable feedback saying they were suitable for use by parents at home and by teachers in the classroom.
“Parents understood the booklets and were understanding their children more. We got more funding from EI and started the process of setting up EPIC as a business to scale our engagement to reach more people and in different ways. For me, innovation is an excellent pathway to scale engagement.”
Tell us about how your research is helping to support neurodivergent children better
“We recently completed a study looking at puberty in neurodivergent girls who are autistic or have ADHD or Dyspraxia. This study has suggested that neurodivergent girls can start their period earlier on average than their neurotypical peers. It can take longer for girls to get on assessment waiting lists. One of the reasons they are less likely to get diagnosed is because they often hide the neurodivergence – what we call masking – so it’s picked up less.
“These girls are often at risk of developing eating disorders and depression. Puberty is often very difficult for them and the changes involved. Before this research there was little knowledge of puberty differences between neurodivergent girls and their peers. Now if a parent of a neurodivergent child or a teacher goes on to the EPIC Think Learn website, they’ll see an infographic explaining that speaking to your neurodivergent child earlier about puberty than you would another child helps prepare them. We’re saying, talk to them at aged eight as puberty can often be starting at nine or ten.”
How do some children try to hide their neurodivergent characteristics?
“A related research study that we completed looked at masking. When we say masking, it’s not just hiding your neurodivergence. It involves spending hours watching people, watching programmes, watching how to be neurotypical. Then the child goes to school, and they’re exhausted, and they don’t quite get it right because every interaction is new and different. And we know that engaging in that kind of behaviour, not accepting neurodivergence, is then associated with depression and anxiety.
“Knowledge is power. It’s wrapping that child around with acceptance born from knowledge, helping the child to understand themselves so that they grow up not thinking why am I so different? But instead thinking, yes, I am different, and these are the reasons why. Yes, I have difficulties, but I understand them.”
How are you expanding EPIC Think Learn’s reach?
“In Scotland, we’ve got contracts with East Lothian, for example, and we’ve got another grant that pays for parents in the Scottish Borders to access services.
“We really want to connect more with organisations and have organisations pay for people, while also having the option for parents to go onto EPIC Think Learn to access more than the free resources. It’s subsidised. We have regular new content. We have a good retention rate, so people come and they stay. We’re up to about 150 parents now.
“We’ll hold a webinar for teachers, and we sometimes can have 400 bookings on it. When you look at the camera, there’s a classroom full of teachers watching. Our whole class materials are set for permanent whole school access.”
Tell us how EPIC Think Learn’s whole class approach is offering support for neurodivergent children?
“With our whole class materials, the idea is being inclusive. The teacher is teaching all the children about executive functions, how we have strengths and difficulties in them, and that all the children will have that to some degree. So, for example, a neurotypical child may not plan out something so well, but it’s not really impacting them. And the important part of that is the neurodivergent child is impacted without being singled out.
“Neurodivergent children can find school, particularly high school, overwhelming. Their teachers and their peers often don’t understand them. The whole class materials approach is working in lots of different ways. For example, a neurotypical child who learns about inhibitory control and being flexible in your thinking, when they next see the child beside them with ADHD, or potential ADHD, blurting something out, jumping in, or making a quick response, they now have a different lens on it. They’re a bit more tolerant and accepting because they understand.
“When we talk to teachers they focus on behaviour and talk about the emotional and the behavioural response of the child. They talk about the child being out of their seat or not listening to instructions, for example. We’re trying to go back to understanding the child. So, the whole class resources are useful for that.”
How can support for neurodivergent children help turn challenges into opportunities?
“It’s a strengths and difficulties approach. We’re always looking at children’s strengths first, including their neurodivergent characteristics. For example, someone who is impulsive can also be a quick decision maker. Being quite inflexible and hyper focused can be a bad thing when you need to move on in the task. However, there’s a lot of tasks it can be good for. Very fine attention to detail can be detrimental in terms of getting on and progressing. But if you’re an accountant and you’ve got an important budget, you’re the one.
“We talk about seeing the challenges as an opportunity, so it’s not a negative thing. Let’s identify the difficulties, because then we can better understand and offer strategies to the child.
“We’ve completed several studies, and we’re doing some more now, where we’re increasingly looking at lived experience and interviewing the children, and asking, ‘Which of your difficulties are impacting you in your daily life?’ For some it might be making friends, or memory, or anxiety or sensory overload.”
What strategies do the EPIC Think Learn resources recommend?
“We talk about looking at the environment and what can we change. If a child has sensory or cognitive overload, can we make the environment less busy? Do they have a quiet space? Can we have instructions on a board? Could they have their own mini white board, which they tend to have in the early primary school years, so the instructions are written down for them? Can they be warned because they like to know what’s coming next. So, the strategies are often around the environment, and cheap if not free things that can be used to help them”
Are there other kinds of strategies?
“Strategies can also be internal like rehearsing information in your mind. It’s about encouraging the child to understand, firstly that they may have, say, a memory difficulty, and then we encourage them to use different techniques to try and help them memorise.
“Things like making up a little rhyme, rehearsing or thinking elaboratively. The things that help neurotypical children learn as they develop. Some neurodivergent children either just don’t do it, or forget to do it or get distracted and stop doing it.
“When I work with teachers, the first thing they say to me is, ‘What are the strategies?’ My response is that it’s mostly about understanding. A lot of it is about the child being able to articulate that this isn’t going right for them.”
What are the results of supporting neurodivergent children with strategies?
“There was a child, only six, who the teacher said that before they’d done a programme with us, he wouldn’t say anything to them when we was uncertain of what to do. They would see a behaviour or emotional response, and no one knew what was going wrong.
“Now he comes to the teacher and says, ‘My brain is busy at the moment.’ So, a strategy is just being able to articulate and recognising that whatever is going wrong relates to the neurodivergence.
“Being able to work together and being flexible is important, as a strategy that works one day won’t necessarily work another day. That’s why we started out with a toolkit approach.
“Ultimately, you’re using strategies to empower the child to understand themselves better, to work out their own strategies if they can, because we’re thinking ahead about them becoming independent.”
What has been the impact of EPIC Think Learn so far?
“It can be difficult to measure this impact and this is why we collect both quantitative and qualitative data. The qualitative data is really important. For example, I had a parent whose child was on the waiting list for ADHD assessment recently say to me, ‘Before we accessed EPIC Think Learn services we didn’t really know about ADHD or what was going on with our child and we thought we were bad parents. We’ve now realised we’re actually good parents.’
“We’re impacting parents and teachers, as well as clinicians and practitioners, who often have very little time to access the latest research. They often don’t have time to read research papers. What papers would I read? How would I find the most relevant research? What is the best journal?
“We’re condensing all of that down via our free blog that anyone can access, via webinars for all three of our user groups – parents, teachers and clinicians. We’ve got a fourth user group in that we’ve got resources for young people now. That is an area we want to make progress with now.”
What are your plans to further improve access to support for neurodivergent children?
“In March, I spoke in Parliament, after the First Minister of Scotland, John Swinney, at an event to celebrate social enterprises. He spoke about his four areas of focus, one of which is supporting public services. I was asked to speak in relation to how EPIC Think Learn supports public services such as the NHS and local authorities.
“I talked about social enterprises and the importance of what we were doing in providing services to those who care for children not yet diagnosed, highlighting these children are on up to five-year waiting lists. That very day Tayside closed their neurodivergence waiting list to general admissions to focus on children who had developed mental health problems.
“My vision is that we reach every child in Scotland, and beyond. We’re online, we have a lot of international interest and downloads and can reach a child while their needs are first identified. We can provide support holistically, so that their parent, teacher and clinician can access resources via EPIC Think Learn.”
Photo credits: Main image of a class of children facing the teacher one with a hand up, GettyImages/Caia Image; Images of Professor Sinead Rhodes and Dr Iona Beange courtesy of Epic Think Learn; Children learning about robotics, GettyImages/izusek; Group of school children talking while a teacher listens, GettyImages/SolStock; School child looking down at a jotter, GettyImages/Phil Boorman; Teacher holding jotters talking to children at their desk, Getty/SolStock.
