Blog - Does an autism diagnosis help children and young people? Insights from doctors and lived experience by ADR UK fellow Xingna Zhang

In this blog, Xingna Zhang, an ADR UK Research Fellow working with ECHILD, reflects on what she learnt while exploring whether an autism diagnosis actually helps children and young people access the support they need — and why listening directly to lived experience matters.

Diagnosed autism is becoming more common among children and young people in the UK, yet waiting times for assessment remain long. This raises an important question: does a clinical diagnosis always make things better, or can the right support be provided without one?

Using the ECHILD database, Xingna’s research focuses on how autistic children and young people experience health and education systems. She began with a common assumption — that a diagnosis helps unlock support such as SEN provision, EHCPs, and autism‑informed healthcare. But conversations with clinicians complicated this picture.

Doctors working in an NHS children’s hospital explained that many children already receive SEN support or EHCPs before a diagnosis, and that most children referred for assessment will eventually receive one. They also questioned whether lengthy assessment pathways are always the best use of limited NHS resources, especially when schools and hospitals could instead focus on providing timely, needs‑based support.

To test these ideas, Xingna spoke directly with children and young people through a Young Person Advisory Group. Their views were powerful and varied. Many said their diagnosis helped them understand themselves better and access practical support, including financial assistance. Others described mixed experiences, particularly the long waits and the feeling of being “singled out”.

Across the discussion, some clear messages emerged. Young people wanted clearer communication, quieter and more sensory‑friendly spaces, supportive staff who understand autism, and better training within hospitals. Above all, they emphasised that every person’s experience is different — and that researchers should always listen to autistic voices directly.

Xingna’s key takeaway is that meaningful dialogue, not assumptions, is essential to improving systems. Research can help illuminate these conversations — but only when it is shaped by the people most affected.

👉 Read the full blog on the ADR UK website to explore Xingna’s findings in more detail and learn more about her ECHILD‑based research.