Our Journey to Diagnosis

Join me on our journey through the challenges and triumphs of seeking a neurodivergent diagnosis for my son. From early signs and struggles to the emotional and long process of assessment, I share the lessons learned and the importance of advocacy. Learn how to navigate the complex systems of support for your child and embrace neurodivergence with love and empowerment.

When you become a parent, you quickly learn that no two children are the same. They each have their quirks, their preferences, and their way of seeing the world. 

Taking the First Steps

The journey to diagnosis wasn’t a straightforward path. It started with countless hours of research, observing patterns, and having what felt like a million conversations with friends, family, and professionals. The first hurdle? Accepting that it was okay to seek help. There’s so much stigma around neurodivergence and diagnosis - as if it’s some kind of label that defines a person entirely. But I realised that seeking answers wasn’t about labelling Jenson; it was about opening doors to understanding and support. Comments like “getting a diagnosis is on trend” or “it’s the in thing” trivialise the immense stress and effort that goes into the diagnostic process. It’s not simple, easy, or something you can just buy. This process isn’t like purchasing a designer handbag - it’s rigorous, emotional, and deeply impactful.

For me, this whole journey resulted in a period of long-term sickness due to stress and anxiety, a referral for dismissal from my employer - though thankfully I found some capacity from somewhere to fight that (a fight that shouldn’t have even been necessary given my circumstances). I had to take a career break and sacrifice a good salary to put all my efforts into supporting our son and advocating for him, because no one else would.

Recognising the Signs

For us, the turning point came when Jenson started Year 1. The transition from play-based learning in reception to the more structured environment of Year 1 brought with it higher expectations, assessments, and a shift in the dynamics of the school day. This is often the stage where neurodivergent children begin to show behaviours that communicate their struggles - behaviours that say, “Something isn’t right. I don’t feel safe. I need more support.”

Unfortunately, these behaviours are often misunderstood. Many neurodivergent children mask their challenges during school, holding it together in an environment that feels overwhelming, only to release their emotions at home - their safe space, with their safe people. For those who don’t or can’t mask, their struggles are often expressed through behaviours that are unfairly labeled as "bad behaviour." Too often, these children are placed on reward charts that fail to address the underlying issues and instead strip away intrinsic motivation. Children should want to do things because they are meaningful, not because they get to move up a traffic light or reach the sun on a chart.

Don’t get me wrong - reward systems work for some children, but not for all. For neurodivergent children, this approach can feel like trying to fit a square peg into a round hole. Recognising this was a pivotal moment in understanding how to truly support Jenson.

Looking back, there were signs even before Year 1. Jenson experienced separation anxiety from as young as one when starting nursery, but it was always deemed developmental. At age three, he had speech delays, but again, these were never linked to neurodivergence. It wasn’t until the structure and higher demands of Year 1 that we began to realise these weren’t isolated developmental quirks but part of a bigger picture.

The Diagnostic Process

We began with referrals to specialists, each step feeling like an eternity. Waiting lists, forms, assessments - the system is anything but quick. Along the way, I learned to advocate fiercely, ensuring that Jenson’s needs didn’t get lost in the shuffle. It wasn’t easy; there were moments of frustration, doubt, and even guilt. Did I do enough? Should I have pushed harder, earlier?

The wait on the NHS was dauntingly long - too long for us to sit back when we knew early intervention was critical. Without adequate support from school, so much damage could be done during that waiting period. We made the decision to go private for a neurodevelopment assessment. I feel incredibly fortunate that we were able to afford this, and my heart goes out to families in similar situations who don’t have the funds to speed up the journey to diagnosis. For anyone in that position, there are some charities that offer financial support, and there is also the "right to choose" through GPs, although wait times for this option are increasing as more families learn about it.

When the diagnosis finally came, it felt like a mix of relief, validation, and overwhelm. Relief because we had clarity. Validation because, along the 18 months from recognising the struggles to getting the diagnosis, my thoughts were often dismissed. Overwhelm because a diagnosis is just the beginning—a tool, not a solution. The real work starts after, figuring out what the diagnosis means for Jenson and our family.

What I’ve Learned

Looking back, this journey has taught me so much. I’ve learned to trust my instincts as a parent and to be unapologetically persistent when it comes to advocating for Jenson. I’ve discovered that neurodivergence isn’t something to "fix" but something to understand and celebrate. Jenson’s brain works differently, yes, but that difference is a source of strength, creativity, and endless possibilities.

I’ve also learned that it’s okay to ask for help. Whether it’s from professionals, other parents, or online communities, you’re not meant to navigate this alone. Sharing experiences and learning from others has been invaluable, and it’s part of why I started this blog - to give back to the community that supported me.

Moving Forward

Diagnosis was just one chapter in our story. It’s a piece of the puzzle that has helped us understand Jenson’s needs better and laid the groundwork for future battles. Instead of opening doors to instant support, the diagnosis marked the start of a new and relentless fight to get those needs met. Each step forward has required advocacy, persistence, and sometimes sheer exhaustion to navigate a system that too often fails to deliver.

To anyone embarking on this journey, know this: it’s okay to feel all the feelings. It’s okay to be scared, confused, or even angry at the system. But don’t lose sight of the fact that this journey is about empowerment - for your child and for you as their biggest advocate.

Thanks for reading, and I’d love to hear your stories too. Let’s navigate this together.

Stay empowered,
Laney