I have read the government’s independent review into mental health, ADHD and autism, alongside the response from National Autistic Society, and I find myself sitting with a familiar feeling. Not surprise, but a quiet recognition of a pattern I have seen many times before.
The review asks an important question, but it asks it in a way that risks missing the people it is trying to understand.
It asks why more people are seeking diagnosis.
From a systems perspective, I understand why that question is being asked. Waiting lists are growing, services are stretched, and demand is rising at a pace that feels difficult to contain. But when you move closer to lived experience, the question begins to feel misplaced.
Because diagnosis is not where people start.
People arrive at diagnosis after years of trying to make sense of themselves in systems that were not built for them. They arrive after being misunderstood, after internalising the idea that they are too much or not enough, after trying to fit into expectations that never quite align. They arrive when coping strategies stop working, or when the cost of continuing without understanding becomes too high.
In my own experience, diagnosis was not something I pursued lightly. It was something I reached after everything else had failed to explain why life felt consistently harder than it appeared for others. It did not give me something new. It gave me language for what had always been there.
The review raises the possibility that diagnosis is being used as a gateway to support, and questions whether this creates an incentive to seek a label. But this framing risks misunderstanding the reality on the ground.
Support does sit behind diagnosis.
And so people learn, often the hard way, that in order to be heard, they must first be defined.
This is not about people adapting themselves to access something extra. It is about people finally finding a way to describe their needs in a system that requires them to do so in very specific terms before it will respond.
If we want fewer people to feel the need to pursue diagnosis as urgently as they do, the answer is not to tighten access to diagnosis. It is to widen access to support.
The review also explores whether we are at risk of medicalising ordinary human experiences. This is a complex and important conversation. But it becomes problematic when what is being described as “ordinary” is, for many people, anything but.
What can look like anxiety, withdrawal, emotional dysregulation or overwhelm is often the result of long-term misunderstanding, sensory overload, and sustained efforts to function in environments that do not accommodate difference. When this is viewed without context, it can be minimised. When it is understood, it becomes something else entirely.
This is where lived experience matters.
Because from the outside, it can look like increase. From the inside, it feels like recognition.
The rise in diagnoses does not necessarily mean that more people are suddenly becoming autistic or developing ADHD. It means that people who have always been here are beginning, slowly, to be seen.
There is also a risk, highlighted in the response from the National Autistic Society, that this conversation becomes polarised. That we begin to frame this as a question of “too many diagnoses” versus “not enough”. In reality, the issue is more nuanced, and far more human than that binary allows.
The real question is not simply why demand has increased.
It is what has been happening to people before they ever reach the point of asking for help.
In my work across training, co-production, and lived experience advocacy, I see this repeatedly. People are not entering systems because they are looking for labels. They are entering systems because they are trying to understand why they have struggled for so long without explanation, and why support has felt out of reach until it is formally recognised.
We need to be careful that in trying to understand the pressure on services, we do not unintentionally question the validity of the people within them.
Because the risk is not just academic. It is relational. It shapes how professionals listen, how seriously concerns are taken, and whether people feel believed or doubted at the point they are most vulnerable.
If this review is to lead to meaningful change, it must stay grounded in the experiences of those it is describing. Not as an addition, but as a central lens.
It must move beyond asking why people are seeking diagnosis, and begin asking what it is about our systems that means they have had to wait so long to be understood.
Because what we are seeing is not a surge in something new.
It is the long-delayed recognition of something that was always there.
Georgina, Trauma Ambassador