What Tourette Syndrome Taught Me About Inclusion

Posted 20hrs ago
by Ashton Cooper

For most of my childhood, I believed that the less people noticed me, the safer I would be.

That isn't something I understood at the time. Children rarely analyse the ways they adapt to the world around them. They simply learn the rules, spoken and unspoken, and find ways to survive within them. It is only years later, with the benefit of perspective, that I can look back and recognise how much of my childhood was shaped by the desire to remain unnoticed.

Part of that was because of Tourette syndrome.

I was diagnosed when I was young, but the diagnosis never brought the sense of understanding or reassurance that many people might expect. Instead, it became another source of confusion. On one side were professionals explaining that Tourette syndrome was a neurological condition, something that can’t be helped. On the other were the messages I received at home. I was often told that it wasn't real, that I shouldn't be doing it, if I continued it was clearly for attention, and that I simply needed to stop. As a child, you don't have the confidence or experience to challenge those messages. The adults around you shape your understanding of reality. So instead of learning how to live with Tourette syndrome, I learned how to suppress it.

Looking back now, I think that had a profound effect on me. When something about you is repeatedly dismissed, you begin to internalise the idea that it should remain hidden. Rather than seeing my Tourette syndrome as one part of who I was, I began to see it as something that might draw unwanted attention. Something people might judge. Something that needed to be managed quietly and privately. Long before I understood what inclusion meant, I learned that certain parts of myself were not supposed to be seen.

I grew up in London as an only child. Like many children, I was endlessly curious. I loved history and science and spent hours immersed in books. Depending on the week, I wanted to become a palaeontologist, an astronaut or something equally ambitious. I was fascinated by stories, ideas and the possibility that there was a bigger world beyond the one I knew. Doctor Who was a particular obsession. I loved the sense of adventure it represented, the idea that ordinary people could step into extraordinary situations and discover things they never thought possible.

From the outside, I imagine I looked like a fairly typical child.

What people couldn't see was everything happening behind closed doors.

Home life was difficult. My parents fought constantly and alcohol cast a long shadow over family life. There was often tension in the air, the kind of tension that children become experts at reading. I learned to assess moods quickly and carefully. I learned which version of people I might encounter on a given day. I learned to stay alert. Even now, years later, I can recognise how exhausting that was. At the time, however, it simply felt normal. When something has always been present in your life, you rarely question it.

As the years passed, that constant state of stress became my baseline, I didn’t have any tools to self regulate, or keep myself in check, I was in overdrive 24/7. Looking back, I can see how deeply it affected my Tourette syndrome. Many people with the condition will recognise the complicated relationship between stress and tics. The more pressure I felt, the harder things became. The harder things became, the more determined I was to suppress them. The more I suppressed them, the less anybody understood what I was experiencing.

It was a cycle that became increasingly difficult to escape.

By the time I reached secondary school, I had become highly skilled at presenting a version of myself that seemed completely fine. I attended lessons, completed assignments and did my best to navigate school life like everybody else. To most people, I was just another student. What they couldn't see was the amount of energy it took to maintain that appearance. Suppression is not simply deciding not to tic. It is a constant process of monitoring, resisting and negotiating with your own body. It requires attention and effort. It is exhausting.

Yet almost nobody knew.

My friends didn't know.

My teachers certainly didn't know.

The vast majority of people I encountered each day had no idea that I had Tourette syndrome at all.

At the same time, they knew nothing about what was happening at home either. As life became increasingly unstable, I became increasingly determined to keep everything to myself. There is a strange sort of loneliness that comes with carrying significant struggles while appearing perfectly fine on the surface. The world continues to interact with the version of you that you present, while the reality remains hidden underneath.

The irony is that I became so good at appearing okay that very few people questioned whether I was.

When people talk about inclusion, they often focus on visible difference. They think about the things that immediately stand out. They think about diagnoses, labels and characteristics that can be clearly identified. My experience taught me something rather different. Some of the people who need understanding the most are the people nobody identifies at all.

For years, I sat in classrooms carrying burdens that nobody could see.

Not because people didn't care.

Not because teachers weren't trying.

Simply because they didn't know.

That lesson has stayed with me far beyond childhood.

As an adult working in education, I often find myself reflecting on the young people sitting in today's classrooms. We are naturally drawn towards what is visible. We notice behaviour. We notice attainment. We notice presentation. Yet every child arrives carrying a story we know very little about. Some stories are openly shared. Others are carefully hidden. Some young people have developed entire identities around appearing capable, resilient and unaffected, even when they are struggling enormously beneath the surface.

I know because I was one of them.

Throughout school, there were teachers who made a significant difference in my life, particularly my English teachers. What is striking, looking back, is that they had no real understanding of the full picture. They didn't know about my Tourette syndrome. They didn't know the extent of the difficulties at home. They didn't know how much of my energy was spent simply trying to hold everything together.

Yet they still mattered.

They encouraged me.

They challenged me.

They believed I was capable of more than I believed myself.

At a time when much of my life felt uncertain, those relationships provided something that was becoming increasingly rare: consistency. A teacher greeting you each morning. A conversation about a book. Somebody taking an interest in your ideas. Somebody noticing your strengths rather than your struggles. These may seem like small things, but small things are often far more significant than we realise.

As I grew older, life became even more complicated. Eventually, I left home at fifteen. Periods of homelessness followed. At times, I found myself relying on friends and trying to navigate challenges that no teenager should have to face alone. Yet even then, the lessons I had learned earlier remained deeply ingrained. Keep moving forward. Don't draw attention to yourself. Keep your difficulties private. Pretend everything is fine.

For a long time, I thought that was strength.

Now I see it differently.

Today, when I think about inclusion, I do not think primarily about policies or strategies. Those things matter, of course. But genuine inclusion begins with something much more human. It begins with recognising that every person has a story, and that we rarely know the full version of it.

Tourette syndrome taught me that in a way no textbook ever could.

It taught me that a person can be surrounded by others and still feel completely alone.

It taught me that somebody can be physically present in a room without ever feeling able to be themselves within it.

It taught me that acceptance and belonging are not the same thing.

For years, I was accepted because people saw only part of who I was. Real inclusion would have meant feeling safe enough not to hide the rest.

That distinction feels incredibly important to me now.

When I work with educators, apprentices and young people, I often think about the version of myself who spent years trying to disappear into the background. The child who believed that fitting in was the same as belonging. The teenager who thought being invisible was a form of protection. The young person who had no idea that one day he would work in education himself, speak publicly about Tourette syndrome and share experiences that he once worked desperately hard to conceal.

If Tourette syndrome has taught me anything about inclusion, it is this: inclusion is not about helping people hide more successfully. It is not about teaching them how to blend in, stay quiet or avoid drawing attention to themselves. True inclusion is about creating environments where people feel safe enough to exist as they are.

That means listening before making assumptions. It means recognising that not every struggle is visible. It means understanding that some of the children and adults around us are carrying far more than we can see. Most of all, it means creating spaces where people do not have to choose between belonging and being themselves.

For much of my childhood, I believed those were the same thing.

Tourette syndrome taught me they are not.

And understanding that difference has shaped not only the person I am today, but the educator I strive to be.

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