Diagnostic Delays (Autism & ADHD)
Why are diagnosis wait times so long?
Demand has exploded, but services didn’t grow to match. Autism and ADHD referrals are at an all-time high, but diagnostic services remain understaffed, underfunded, and overwhelmed. In many areas, referrals keep coming- but assessment slots don’t. Some local trusts have even paused waiting lists completely. Others offer no transparency about wait times at all. This postcode lottery leaves families confused, anxious, and stuck in limbo for months (or even years!) without support.
Why are autism and ADHD assessments kept separate?
Bureaucracy. Despite overwhelming clinical evidence that autism and ADHD often overlap, NHS pathways still treat them as two entirely separate conditions requiring two separate referrals, two waiting lists, and two full assessments. This system creates massive duplication, delays, and distress.
Parents often know their child needs help in both areas, but are forced to choose which to pursue first. Campaigners argue this isn’t just inefficient- it’s inhumane. Reform could cut delays in half, but the system is slow to change.
Is there any help while you’re waiting?
Technically, yes. But in practice, not really. New guidance suggests that children and adults waiting for diagnosis should still receive reasonable adjustments and support based on need, not diagnosis. But implementation is patchy and inconsistent. Some schools provide sensory support or flexible timetables during the wait; others refuse to help unless there’s a diagnosis on paper.
Families are forced to become caseworkers, educators, and advocates just to get basic needs met during the years-long gap between referral and assessment; often at great cost to their own mental wellbeing. And so the problem compounds.
Why don’t we have targets or accountability?
Because neurodivergent care has never been a national priority. Unlike cancer or physical health conditions, there are no mandatory NHS wait-time standards for ADHD. And, while autism is technically supposed to be assessed within 13 weeks, 89% of referrals exceed that limit. Local NHS trusts aren’t penalised for breaching these timelines. They aren’t even required to publish waitlist data.
This lack of visibility and consequence means nothing improves unless families shout loud enough... and even then, it’s an uphill battle.
Use our FOI template to demand transparency from your local NHS trust.
Quick Stats:
Over 200,000 people in limbo
✦ As of September 2024, more than 204,000 people were on waiting lists for autism assessments in England. According to NHS data, 89% of them had already breached the 13-week target set by NICE (the National Institute for Health and Care Excellence). That’s not a small oversight: it’s a systemic failure, leaving thousands of families without answers, accommodations, or a path forward.
A median wait of over a year for children
✦ Studies show the median wait time for children is 525 days; that’s over 17 months before they’re even seen. Adults fare slightly better, but still face median waits of 252 days. These numbers hide even longer waits in certain areas, where a lack of clinicians and growing referral backlogs stretch timelines beyond anything reasonable.
Postcode lottery in full effect
✦ Your location can make or break your chances. Some NHS trusts report autism assessment delays of 2 to 4 years. In Devon, the average wait has hit 81 weeks, with the longest recorded delay surpassing 122 weeks- that’s over two years and four months! For families in urgent need, these delays aren’t just inconvenient; they have devastating consequences too.
ADHD left behind — or shut out entirely
✦ The picture is even murkier for ADHD. Combined ADHD and autism waitlists may now include over 549,000 people in England. Some adults have reportedly waited up to 8 years. In the most under-resourced areas, adult ADHD referrals have been paused entirely as trusts scramble to prioritise child assessments. For many, the only real option is private care... if they can afford it.
Gloves on. Because this fight is worth it.
Demand Change: End the ADHD-Autism Divide
The system’s delays aren’t just frustrating, they’re devastating. Every day, thousands of people in the UK are stuck in limbo, waiting months or years for diagnoses they urgently need.
Despite clear clinical evidence that autism and ADHD often co-occur, NHS pathways still demand two separate referrals, two waiting lists, and two assessments- doubling delays and distress.
This isn’t care. It’s bureaucracy at its worst. Reform could cut wait times in half... but only if we demand it.
Sign the petition to assess ADHD alongside autism (#AlsoADHD)
Let Parliament know: no one should have to wait years for help that could change (or even save!) their life.
What does this have to do with art?
When help never comes, people turn inward. CAMHS delays don’t just leave children unsupported; they leave families isolated, desperate, and traumatised. For many here, art became a form of survival. A way to process the chaos, the silence... the worry.
At NotFine, we showcase the raw emotional truth behind these failures because sometimes, what can’t be said with words alone shines through art.