That question, asked by a young person I was working with, became the title of one of my studies, because it captures something we too often skip past. We spend a great deal of energy defining dyslexia, assessing it and planning support around it, and comparatively little asking the young people living it what it actually means to them.
So I asked. In “I’m Dyslexic but What Does That Even Mean?” (Ross, 2021), published in the Scandinavian Journal of Disability Research, I spent time with young people aged 11 to 14, listening to how they understood their own dyslexia and how it shaped their lives at school. What they told me has stayed with me, and it should shape how any of us support them.
The story they tell themselves shapes everything
The clearest finding was that a young person’s conceptualisation of their own dyslexia sat underneath almost everything else: how they got on with teachers, how they related to friends, and how they engaged with support itself.
This isn’t a soft or abstract point. A young person who understands their dyslexia as a workable difference moves through school in a fundamentally different way from one who has quietly concluded they’re stupid. The internal story becomes the lived reality. Which means one of the most important things any adult can do is help a young person build an accurate, hopeful understanding of how their own mind works. I’ve written about the mental health stakes of this in dyslexia and mental health.
They want to control who knows
One theme came through with real force: disclosure. The young people were often open to discreet conversations about their difficulties, but they did not want their dyslexia “outed” to everyone. They wanted to control when, whether and to whom it was made known.
That’s a completely reasonable wish, and it has sharp implications for practice. Support that quietly marks a child out, the different worksheet, the adult who always sits with them, the being sent off somewhere else, can strip away that control and expose something they wanted to manage themselves. Discretion isn’t a nicety here. It’s a form of respect.
They depend on us more than we notice
Here’s the part that gave me pause. Although young people had real agency in some areas, particularly in navigating their friendships and deciding what to share, they were often dependent on their teachers when it came to disclosure and support. Teachers hold power, and can effectively make disclosures “for” a young person. And strikingly, most of the students didn’t feel able to challenge a teacher, even when they had a support plan setting out their needs in black and white.
Sit with that for a moment. A child can have their needs formally documented and still not feel able to speak up when those needs aren’t being met. That tells us the plan on paper is never enough on its own. What matters is whether a young person has a relationship with an adult that makes it safe to speak, a point I develop for schools in how good dyslexia support actually happens.
Friendships carry it too
Dyslexia also shaped the young people’s relationships with each other. Some chose to align themselves with peers who had similar learning differences, their friendships informed by a shared understanding of what it’s like. Others found their dyslexia got in the way, feeling less able to engage with the pupils they saw as “popular”. Their sense of themselves as dyslexic, and how comfortable they were with it, fed directly into the social world they built.
What this means for the rest of us
Pull these threads together and a simple principle emerges: consult young people, and take what they say seriously. They are, in the language of the research, both capable social actors and people still growing, a “being” and a “becoming” at once. They have views about their own support that are usually perceptive and often go unheard.
For schools and parents, that means asking rather than assuming. What helps you? What makes you feel exposed? Who do you want to know? For me, it’s the ethos underneath all my work: young people with SEND deserve to express their needs, preferences and goals, and to be genuinely listened to. Listening isn’t the soft option. It’s the thing that makes everything else work.
Questions people often ask
Why does it matter what dyslexia “means” to a child? Because a young person’s understanding of their own dyslexia shapes how they engage with school, friends and support. Helping them build an accurate, hopeful sense of it is one of the most protective things an adult can do.
Should I tell other people my child is dyslexic? Follow your child’s lead where you can. Research shows young people often want to control who knows and dislike being “outed”. Discreet, respectful handling of disclosure matters to them a great deal.
Why won’t my child speak up when their support isn’t working? Many young people don’t feel able to challenge a teacher, even with a support plan in place. A trusting relationship with an adult is what makes it safe to speak. The paperwork alone rarely does.
How can schools hear the pupil voice better? By asking young people directly and regularly what helps and what exposes them, involving them in decisions about their own support, and treating their views as expert testimony about their own experience.
References and further reading
- Ross, H. (2021) ‘I’m Dyslexic but What Does That Even Mean?’: Young People’s Experiences of Dyslexia Support Interventions in Mainstream Classrooms, Scandinavian Journal of Disability Research, 23(1), 284-294. https://doi.org/10.16993/sjdr.782
- Ross, H. (2017) An exploration of teachers’ agency and social relationships within dyslexia-support provision in an English secondary school, British Journal of Special Education, 44(2), 186-202. https://doi.org/10.1111/1467-8578.12174
- Ross, H. (2019) A case study: developing a safe space for vulnerable young people at school, Support for Learning, 34(2), 162-178. https://doi.org/10.1111/1467-9604.12246
See the full list of publications.