Despite affecting millions, dyslexia often goes undiagnosed – leaving 80% of dyslexic students to struggle without support.
When I was at school, I convinced myself I wasn’t academic. I did just fine in my GCSEs and ‘A’ Levels, passing everything with Bs and Cs. While this doesn’t seem like a bad thing, I always wished I could do better.
I felt like I was working hard enough to get high grades, but I never could. I always saw my classmates and friends achieving top results, getting shoutouts from the school because of how well they’d done. My name was never on that list, and it upset me. I was trying really hard, but never achieved what I wanted.
Then, a diagnosis just before my final year of university shifted my entire perspective. I’m dyslexic. It wasn’t that I wasn’t intelligent or working as hard as other people; it wasn’t my fault.
This diagnosis made me look back at my entire academic career differently. Why had my schools never noticed? What would my results have been like if I’d been diagnosed earlier? Would I have performed better and been more confident in myself?
One of these questions does have an answer: why had no-one noticed? I’m part of a huge majority of dyslexic people who were diagnosed later in life.
In fact, in the UK, around 80% of dyslexic people leave school without a diagnosis, while about 10% of the population is believed to be dyslexic, but it is still largely misunderstood.
The Department for Education estimates that out of the 8.7 million school children in England, 870,000 of them have dyslexia, but fewer than 150,000 have been diagnosed.
Dyslexia is defined by the British Dyslexia Association (BDA) as “a specific learning difficulty which primarily affects reading and writing skills. Dyslexic people may have difficulty processing and remembering information they see and hear, which can affect learning and the acquisition of literacy skills.”
There are multiple reasons why so many people are going undiagnosed. One of them is that no two dyslexic people have the same experience. Challenges can vary from person to person, and there is no one-size-fits-all framework.
It also varies between sexes, as boys can be more likely to receive a diagnosis, as they may behave differently in classroom settings due to their struggles. Girls can also more effectively mask neurodivergences and tend to be less disruptive than their male counterparts.
The main issue with dyslexia diagnoses is the education system itself. Dyslexia is not a medical condition, meaning the NHS won’t diagnose it. It can only be formally diagnosed through a diagnostic assessment performed by a specialist teacher or psychologist.
This means that if a school won’t or can’t pay for a student’s diagnosis, the student and their family must pay for it. Assessments through the BDA cost between £690 and £882.
Because of this, those from lower socioeconomic backgrounds can suffer even more. Research has found that children with special educational needs who live in affluent areas have a much higher chance of being diagnosed and receiving the support they need.
In the United States, African American children tend to be underdiagnosed in comparison to White children. The fact that there are higher rates of diagnosis in certain parts of the country means that the support is often concentrated in these areas, leaving those in deprived areas with very little.
Dyslexia is also still relatively misunderstood, and there is a stigma around learning differences. “I think there’s a lot of stigma”, Lubna Shaikh, a 21-year-old student, tells me.
“People just think that you’re dumb and you feel scared to tell people you’re dyslexic.” Lubna was always suspected to be dyslexic by her school but wasn’t formally diagnosed until she was 18, in her first year of university.
By far the most prominent factor affecting dyslexic students is the lack of teacher training and support in schools. Teachers are more than capable of helping those children with dyslexia or other learning differences, but often lack the correct equipment.
Around 43% of schools in the UK fail to understand dyslexic challenges, leaving a huge proportion of students to struggle through the school system. One of the biggest failings is that teachers are not given the proper training, and many feel unprepared to support a student with a learning difference.
“We do play a vital role in identification and intervention”, Angela* tells me, “But there is no compulsory, in-depth training for educators in Britain on spotting the subtle signs of dyslexia”.
Angela has been a secondary school teacher for many years and is now working as Head of English. “If I had a magic wand, I would advocate for universal early screening in primary school,” she says, “instead of waiting for a student to fail repeatedly before considering an assessment”.
Schools in the UK are also often underfunded, particularly special educational needs (SEN) schools. It’s a legal requirement for all schools to have a SENCO (special educational needs co-ordinator). However, budget problems mean that many SENCOs have other teaching responsibilities.
More children are requiring specialist support, and although more funding has been provided, it is still not enough to give the support that is required and deserved. Four out of five schools in the UK do not have adequate funding to support their SEN students.
“Before I knew I was dyslexic, I used to just think ‘I’m dumb, I’m dumb'”
Lubna Shaikh
Often, SENCOs have much of their time taken up by more high needs students, those with ADHD, autism or other difficulties that affect learning. While these children absolutely deserve time and support, dyslexic students can be overlooked, and their difficulties can sometimes be missed entirely.
All of my classes had 30 students, some with more obvious learning difficulties, and there was one SENCO for more than 1,000 students.
I was a quiet person, I kept my head down and did my work. My teachers praised how hard I worked and how dedicated I was to my studies, and my reading age was well above my actual age.
I rarely asked for help and did just well enough to pass everything. Even I didn’t notice anything was different, I just believed I wasn’t academically inclined. It would’ve been hard for even the best teacher to notice anything was amiss with my learning.
A late diagnosis, or a complete lack of one, can have broader consequences. Dyslexic students without a diagnosis are over three times more likely to be excluded from school and leave school with lower qualifications.
Research has found that “dyslexics are more anxious, more depressed and had disturbed self-esteem compared to their non-dyslexic peers”.
Without the proper support and educational achievement, dyslexic people can end up turning to crime instead. About 30% of prisoners are diagnosed as dyslexic, and generally, those who are overrepresented in the criminal system were underrepresented in education.
One of the most common consequences is a lack of self-confidence and belief. The struggles and frustration of not being able to perform in school can have lasting effects well into adulthood.
“I compared myself a lot to other people. Before I knew I was dyslexic, I used to just think ‘I’m dumb, I’m dumb’,” Lubna admitted.
“I think many of us still have school-based traumas that rear their heads occasionally,” Nicky Wall tells me. “If I’d known I was dyslexic, I think I’d have been less hard on myself.”
Nicky was formally diagnosed with dyslexia at 19; although she was suspected to be dyslexic by her parents, her school told them she was not.
The UK’s education system requires serious reform for students with learning differences, particularly dyslexia, according to the charity Made By Dyslexia.
They are now calling for the government to provide more funding for teachers to have specialist training on spotting the signs of dyslexia. They are also pressing for dyslexia screenings to be compulsory for schools.
Accessible diagnostic support could be life-changing for so many children. Early intervention and screening can help them to achieve their full potential with the right support, leaving them feeling confident in their abilities. It can empower students to face any academic challenges with perseverance and resilience.
Nicky works in an Alternative Provision (education for children who cannot attend mainstream school) with dyslexic children.
“It’s very clear what we’re doing isn’t working. We need better training for staff to spot when more specialist intervention is needed and better resources to support kids. We need a total rethink on how we value non-academic intelligence”.
But reform can’t stop at a diagnosis. Students must continue to receive consistent, meaningful support in their everyday classroom practice. They require teaching that accommodates their challenges while also recognising their strengths.
For that to happen, schools need the proper resources. Simple changes like clearer instructions, alternative ways to present work and assistive technology can make all the difference.
“A proactive teacher would turn the focus toward immediate, practical steps that we can take in the classroom, even without a formal diagnosis,” Angela tells me. “This can build student confidence and reframe their learning difference positively.”
“All of the things I’m really proud of are because of being dyslexic”
Nicky Wall
Improving support and diagnosis for dyslexia isn’t just an educational issue – it’s also about improving wellbeing and opportunities. When we fail to diagnose dyslexia, we fail bright, capable students who just learn differently. With a change to the system, we allow those with dyslexia to thrive not only in education, but their entire life.
Despite the lack of diagnosis and support, those with dyslexia continue to thrive. Navigating school and life with these challenges is something to be celebrated. It builds determination and creativity in a way that goes far beyond the classroom.
Furthermore, many people are beginning to think of it as a gift. Dyslexic people are good problem solvers, tend to be observant and creative, and are more likely to think three-dimensionally.
In fact, NASA often intentionally hire dyslexic people, with more than 50% of their employees having it. This is because of their excellent spatial awareness, and research found they were better at identifying black holes than those without dyslexia.
“All the things I’m really proud of are because of being dyslexic. When I worked in TV, I had a reputation for being reliable, organised, creative and imaginative in solving problems,” Nicky explained.
“I feel like getting into university was a massive thing for me because I never thought I would get in,” Lubna tells me. “Even my teachers didn’t really believe in me.”
The challenges are real, but so is the potential for change. With proper training, more resources and a better understanding of dyslexia, schools can become a place where those with learning differences are seen from the start.
For now, though, thousands of people remain undiagnosed, unable to fulfil their full potential, left with the belief they’re unintelligent and unable to achieve.
* Interviewee’s name has been changed to protect their privacy.
Featured image courtesy of Emilia Birch.