Everyone’s brain is wired differently, but for neurodivergent children, those differences can be life-changing. The fifth annual Salvesen lecture, held at the University on 16 November, aimed to show how working with local communities to better understand co-produced research on neurodiversity can change outcomes.
The lecture, Learning to Read in the Wider Context, was led by Holly Joseph and Alice Mpofu-Coles. Alice spoke about the importance of participatory research and working with community members to build trust and develop relationships, while Holly educated attendees on how including the experiences and views of parents, teachers and community members in developing initiatives aimed at promoting a love of reading in young children and their families, has improved quality, uptake and life experience.
Holly, a Professor of Language and Literacy Development at the University of Reading, says: “I hope people think more broadly about the context and complexity of the topic and understand that much of the research that has been done has artificially created these homogeneous groups of children who have dyslexia or don’t have dyslexia.
“For years and years, we’ve understood dyslexia as it is represented by this very specific group of children who actually don’t represent the full range of children with dyslexia-type reading difficulties.
“All of this work is very much taking a social justice perspective to understand the way different systemic barriers intersect to affect a child’s experience of learning to read – barriers such as language, racism, disability and poverty,” Holly adds.
“All these things intersect and sometimes as researchers we want to take that complexity away but you can’t remove complexity from a child’s life so you shouldn’t be taking it away in research either.
“I hope the Salvesen Lecture will bring about more social justice in a very small way.”
Sophie Dow realised neurodiversity was a public health issue when trying to access support for her daughter Annie who is mentally handicapped.
“There are six or seven children in every class who have some form of stumbling block and I realised that this is a public health issue and nobody is really focusing on it,” Sophie explains.
“Neurodivergence or neurodiversity concerns us all. It’s in every family – it’s not about them and us, it’s about all of us.”
Sophie founded the Salvesen Mindroom Centre (SMC) in 2001, with the purpose of raising awareness of the conditions that give rise to learning difficulties, and closely collaborated with the Centre for Clinical Brain Sciences at the University of Edinburgh.
The Salvesen Mindroom Research Centre at the University was then established, with the goal of creating new knowledge of neurodevelopment and diversity and using that knowledge to link research and practice.
Shifting public perception
The SMC aims to raise awareness of all kinds of learning difficulties, with common conditions associated with learning difficulties including Attention Deficit Hyperactivity Disorder (ADHD) and Attention Deficit Disorder (ADD); Developmental Coordination Disorder (DCD), autism and dyslexia.
But Sophie says one of the biggest challenges in her work is changing public perception: “Understanding how the brain works has to come with a paradigm shift in how we look at and understand our fellow human beings.
“My driving force is human rights. Every single person that’s born has the right to a dignified life, and that’s not the case right now. And that’s what we’re working to change.”
Assessing the impact of the pandemic
Dinah Aitken, Head of Outreach at Mindroom, says Covid was a challenging time for SMC as it had a significant impact on young people with neurological conditions.
“We are still trying to figure out what the impact of the pandemic is,” she says. “For lots of young people that we support, they’ve really struggled to go back to school or go to college having been in lockdown for so long.
“It’s caused quite a lot of anxiety and I think we are going to be unpicking the impact of the pandemic for quite a few years but we have heard inspiring stories from the families we’ve helped – it can be something like a young person going out into the garden themselves for the first time in six months. It seems like a really small thing but to that person it’s transformative.
“I think it’s significant that we are growing as a charity and we are committed to attracting people to the lecture who are interested in finding out more about neurodiversity.”
Real-world impact
Alan Thornburrow, CEO of SMC, says the charity’s work with the University is crucial in creating impact in neurodiversity research.
He says: “Mindroom has quite a special relationship with the University, similar to the US and the UK in that we bring these two very complementary insights together from research and practice and that genuinely does provide a mutual feedback loop where we can learn from each other to inform better research questions and better interventions that support people in their daily lives.
“It’s great to have leading research policies and practice but unless that shows up in better ways for people to thrive in society, then it’s all been for nothing.
“Sue and I are very keen that the work we do has impact in the real world and that for me is why the lecture is important because it aims to bring people together and showcase what other people are doing in this space and put solutions into practice.”
Find out more
Salvesen Mindroom Research centre at the University of Edinburgh