Being a parent to a child with special educational needs is a journey filled with endless love, resilience, and advocacy, but it also comes with daily challenges and frustrations that many never see. I am a parent to C, my bright, inquisitive, and spirited nine-year-old boy who has a dual diagnosis of autism and ADHD. Our journey to understanding C’s needs has been long and emotionally complex—a story that I want to share with other parents who may be in a similar place or who might be struggling to navigate the maze of SEND (Special Educational Needs and Disabilities) support.
The Early Signs
We first started noticing differences in C’s development around age two. While other children his age seemed naturally curious and socially engaged, C was often content to play alone, fixated on lining up his toys or meticulously examining textures. As a parent, part of me knew he was developing in his own unique way, but another part of me wondered if there was something more going on. With encouragement from family and friends, we sought help from our local NHS paediatrician and the Local Authority Early Years team, hoping for guidance. This early intervention was a godsend, as it put us on the path to understanding C better and getting the support he needed.
The Autism Diagnosis: A Mix of Relief and Fear
From the age of two, C was under observation by healthcare professionals, each of whom documented his progress and shared insights about his unique way of engaging with the world. These observations and assessments formed a detailed picture, and by the time C was nearly five, we met with a speech and language assessor from our NHS trust for a final assessment. The conclusion was clear: C had autism.
Hearing the paediatrician say “autism” left me feeling mixed emotions that I hadn’t prepared for. I burst into tears. On one hand, they were tears of relief—finally, we had a name and an explanation for all those little things that set C apart. But there were also tears of fear, a sense of overwhelming responsibility to support C in a world that doesn’t always offer the resources or understanding that disabled children need. I worried about the future, about C’s school years and his social life, and how we would find the support he deserved.
Seeking an ADHD Diagnosis: An Uphill Battle
As C grew older, it became clear that his challenges extended beyond autism. He had boundless energy, struggled with focus, and found it hard to regulate his impulses. We suspected that ADHD might also be at play, and so began another chapter in our journey: trying to get an official ADHD diagnosis.
This, however, was an entirely different experience. Unlike the relatively smooth process of C’s autism assessment, the road to an ADHD diagnosis was riddled with obstacles. Our local CAMHS (Child and Adolescent Mental Health Services) told us the waiting list for an ADHD assessment was six years long. Six years. C was only six at the time, and the thought of him not having the support he needed until he was nearly a teenager was unthinkable.
Turning to Private Care: A Necessary Expense
Faced with this roadblock, we decided to pursue a private diagnosis. It was a huge financial commitment—over £1,000—but for us, it was a necessary step to ensure C received the support he needed in real-time. We found an incredible charity, ADHD Norfolk, that helped us navigate the private diagnostic process and, eventually, get C started on medication that made a tangible difference in his life.
Another Setback: CAMHS’ Refusal to Support C’s Medication
Once we had C’s private ADHD diagnosis, we reached out to CAMHS, hoping they would take over his medication and manage his care. But CAMHS had a strict policy: they would only provide support if they completed their own ADHD assessment, despite the formal diagnosis C already had from a qualified and reputable professional. It was frustrating and felt dismissive, especially knowing that many families, like ours, are forced into private care simply due to the extreme waiting times for assessments.
After another long wait, we submitted a complaint, pushing CAMHS to act sooner. Finally, they agreed to assess C themselves, and within a week, CAMHS conducted their assessment and confirmed the ADHD diagnosis we had already received. It was a bittersweet victory—on one hand, we finally had official recognition, but on the other, it felt like we’d had to fight so hard for something that was already so evident.
Reflections on a System That Needs Change
Our journey to understanding and supporting C has been a rollercoaster of emotions and frustrations. I’ve felt joy in seeing C thrive with the right support, but I’ve also felt heartbreak and anger over the delays, the costs, and the endless bureaucracy. For parents of children with SEND, we face an uphill battle at every turn, and while there are incredible professionals along the way, the system itself is still far from where it needs to be.
When I think back to those early years—the relief of finally knowing and the fear of what lay ahead—I realise they encapsulated what many parents in this position feel. We want to be able to support our children and give them a fair chance at life, but we’re often navigating a world that feels indifferent to their needs. To any parent on a similar path: you are not alone. This journey is exhausting, frustrating, and often heartbreaking, but it is also filled with the deepest love and pride imaginable. We are our children’s advocates, their strongest supporters, and we’ll continue fighting for them in a system that one day, I hope, will finally be designed to support every child fairly and fully.
