Dr Cathy Manning from the University of Birmingham and corresponding author of the study said:
“The views of members of the dyslexia community are vital to help us prioritise research that they care about. The results are clear too – there is a strong feeling that we should be directing more funding to focus on finding the most effective interventions and support for people with dyslexia in society, whether that be in education, work, for their mental health and wellbeing, or in making society more inclusive.
“The findings also suggest that research identifying genetic factors and ‘risk factors’ are the least important studies to be funded, although still moderately important.
“Overall, this research is both a very valuable message for funders about what people in the dyslexia community are looking to focus on, and highlights that much more funding is required to better support and understand dyslexia which affects so many people in society.”
Case studies elicited from the study highlight the areas of concern felt by those living with the learning difference.
Case study 1: Ruth Thomas, Birmingham (parent of child with dyslexia)
Single parent Ruth Thomas from Birmingham says that although her daughter Sarah’s teachers had previously mentioned that her reading and verbal abilities seemed to be disjointed, it wasn’t until she homeschooled her during the Covid-19 lockdown that she realised how much she was struggling. She said: “During Covid when lots of work was coming home from the school, I was sitting doing it with Sarah and I thought, oh dear, you know, she's really struggling with the reading comprehension and she's really struggling with the spelling. I hadn't really noticed that before in her free writing, and I got more and more concerned.”
Sarah was given a learning assessment with Dyslexia West Midlands who provided some strategies but a year later, despite putting in the work at home and school, her learning was still not where Ruth felt it should be so she paid the costs required for a paid-for assessor in order to get an official diagnosis.
Ruth explains:
“My daughter was given a diagnosis which I think was very hard for Sarah to take on. She didn't want a label. But I also knew that, having a label would also probably in the future be a comfort to her, to know that “It's not just me. There's something going on in my brain”.”
Sarah, aged 12, has now accepted her diagnosis and is thriving at secondary school. Her mum says: “She is in a secondary school that is supporting her. She's got dyslexia and she's not ashamed of it.” Ruth is in no doubt that a diagnosis and one-to-one intervention have had the most positive impact on her daughter and is something those with dyslexia would benefit from. She said: “I think that there does need to be adult one-to-one intervention. It's not just that they can cope in lessons, they need to have strategies to help them. It’s not just about creating a dyslexic friendly classroom, it's also thinking about personalised intervention for that child. Sarah's so articulate herself that she could say where she’s really struggling. She's a bright girl so once you've given her strategies, she'll run with them.”
Ruth is keen to stress that it’s not a one-size-fits-all approach and individualised support needs to work hand in hand with more accessible teaching strategies within classrooms. She said: “I do think we need to listen to children. There are going to be differences between some children and I think the support needs to be varied.”
Case study 2: Alice Williams, Reading (dyslexic)
Alice Williams from Reading experienced first-hand how the education system could be simultaneously supportive and disparaging about her dyslexia. Alice received her dyslexia confirmation at 17-years-old when, after years of gliding under the radar at a comprehensive school, teachers at her new private school observed the differences in her written and verbal communication.
She said: “My teachers saw someone full of potential who verbally was considerably adept, but on paper couldn’t string together a coherent chain of thought. It was my English teacher that, in a report, first put into words that my verbal vs written communication was on such differing levels that it was worth looking into and lo and behold, after meeting with an educational psychologist, I received my confirmation of moderate dyslexia with a short-term memory impairment.”
It took time for Alice to come to terms with her diagnosis and she was keenly aware of the negative nature of phrases used within the education system to describe her dyslexia. She said: “All the messaging I received about my dyslexia was all about my deficiencies. Specific phrases in school reports and particular education-focused meetings still stick with me, such as “despite her dyslexia” and “She is doing well for someone with dyslexia”. And that impacted me all the way until my mid-20s where I took time to work on my relationship with my neurodivergence and embraced all the amazing things I can do.”
Speaking about her involvement in the research, Alice stressed how valuable she found the opportunity to talk about what research should be focused on. She said:
“We don’t need more research on the why or how; we need research to focus on the who, the human aspect and experience, not just for those who are dyslexic but for those who support those dyslexics in their life. A by-product of being part of this was being able to speak to those from my community and that things we experience and the frustrations we faced are in one way or another the same, just in differing fonts. I felt a lot less alone."
