The NHS autism assessment waiting times are brutal. We joined the waiting list for my son’s combined autism and ADHD assessment over 18 months ago. What followed was a period of anxiety, judgement, co-parenting conflict, and a system that keeps moving the goalposts. This is the honest account I wish someone had written for me — for every parent out there waiting, hoping, and trying to navigate the NHS assessment process.
Quite a few people have asked me why I didn’t write last week. The truth is not that I had nothing to say — it’s that I had too much. My brain has been in complete overload and I haven’t been able to coherently put anything into words.
Writing usually helps me make sense of things, but recently even that has felt impossible. Maybe this means I am a true writer with writers block! I needed space, air, and quiet before I could come back to this. I needed mental capacity. So this is me returning — slowly and honestly. What follows are two diary entries from January, written in the moment as I lived through them. I intended to publish this all in one once my son’s assessment was over but it now feels like a good time. Read on to find out why.
I’ve left them in their raw, reflective form because they capture exactly where I was at. If you are in the same position as me — and there are lots of us out there, just waiting and hoping for answers — I hope this finds you. Waiting for this assessment is torturous. Imagine waiting over 18 months to find something out and in that 18 months while waiting time and time again you are judged for causing this. And you know the only way to get a definite answer is to wait for this assessment. It is torture.
The Reality of NHS Autism Assessment Waiting Times
7th January
Today was 7th January. Most people start a new year with freshness and the desire to change things. But as 2026 came I knew this year would make or break me as a parent.
The day I had been dreading but also needing was looming over me (and my son, although as yet he knew nothing about this) — looming over me for months. We joined the NHS autism assessment waiting list for my son’s combined autism and ADHD assessment over 18 months ago. The last update I received said he would likely be seen by February 2026 — which, when I heard it, felt impossibly far away. Now, suddenly, that distant date was here.
During that long wait, I had often considered going private. Looking back, I think that urge came from a place of wanting something to be “fixed.” I now understand that there isn’t a fix. This is our life — complicated, beautiful, exhausting, and real.
And so we waited. And while waiting we made lots of changes and things are better than ever before. I don’t actually need a diagnosis for myself, and my son doesn’t need one to be who he is, at least not here. So why pursue it?
The diagnosis is for other people. I know what works for my son and what doesn’t. I can explain this to him so he knows what works for him and what doesn’t but there are people in the world, even professional people, even people at school who are meant to know about this stuff that won’t take that seriously unless there is a bit of paper with that diagnosis. It provides a quick explanation for why my son might need things done differently. It also carries — or should carry — legal weight in ensuring he receives reasonable adjustments.
Most importantly, I wanted this in place before he started secondary school. Primary school had already been challenging enough, and I wanted to give him the best possible start to the next chapter. People often talk about “labels,” as if parents are chasing them. But without a diagnosis, my son risks being labelled in far more damaging ways — as “weird,” “difficult,” “naughty,” or “odd.” And that makes my son not be the person he is. And everybody should always be true to themselves shouldn’t they?
While waiting, I tried to keep the assessment out of my mind and I had done so quite well to be fair. Quietly, I gathered evidence: reports, photos, videos, and examples of language differences, sensory responses, and communication styles that didn’t quite fit what people expected. Writing this blog actually helped to consolidate the things I saw into my memory so I could talk about them in this assessment. Over time, I felt increasingly certain that his neurodivergent traits were becoming clearer…certainly in this house anyway.
But I dreamt about it often. Sometimes I dreamt of finally receiving a diagnosis and feeling the relief of being believed. Other times I dreamt of no diagnosis — and waking in a panic, wondering what that would say about me as a parent.
As the assessment drew closer, my anxiety became overwhelming. My husband told me he had never seen me so distressed. He was right. I was fidgety, couldn’t sit still, constantly on edge. A part of me wondered: what if they say he isn’t autistic? I had gone so far out on a limb. I had even written a whole blog based on the fact that I believed he was. If you’re reading this and googling “NHS autism assessment waiting times,” I see you. You’re not alone in this impossible wait.
But then I think about it and really deep down I know he is. I’ve known it since he was a baby. And the professionals will see that right? Won’t they? Well my experience of professionals has been poor so maybe they won’t. And this is where I am at with it. So the thoughts loop in my head, over and over, until the assessment. Round and round. It’s awful.
I also carry the weight of judgement from others
“He’ll grow out of it”
“He just needs boundaires”
“Parents just want their kids diagnosed for the money.”
“Parents just want their child to have extra time in exams.”
If only they knew our reality. No amount of money could ever compensate for what we have been through and as if a diagnosis is the golden ticket to a shed load of money – that is a whole different process. And the idea that this is about exam time feels almost insulting. But when you hear those narratives often enough, they start to seep in even though you try to protect yourself from them.
And round and round those thoughts go.
Maybe we’ll finally have clarity after the assessment. Or maybe we’ll be left with more questions. Only time will tell.
23rd January: The Co-Parenting Challenge During Assessment Wait
It’s been about two weeks since I last wrote, and for a while I’d been managing — just about. I constantly reminded myself of how far we’ve come as a family, and that I’ve survived difficult periods before. I listened to my favourite band on repeat — their music has carried me through dark times, and it helped again. For a while, I managed to keep going.
Then the communication from my son’s dad started up again. In the past, I had tried to discuss my concerns about our son’s neurodivergence with him. I kept him informed of all my thoughts/theories, told him about the traits I saw, updated him on sleep and diet and meltdowns. The response I got back was consistent – it was me that was the problem. My son didn’t like being at this house. And the best one…..I just “needed to give him a little bit of positive encouragement”. His stance was very clear. We weren’t just on different pages — we weren’t even in the same book.
And the more I talked to him about it, the worse things seemed to get for my son. It felt like the more I told his dad these things the more pressure was being placed on my son to be “normal,” which only made him struggle more. Eventually, after countless calls, doorstep conversations, and joint school meetings, I decided I could no longer engage with him on this topic. It was soul destroying for me to be constantly blamed for this.
I felt slightly validated when our Early Help worker even told me, off the record, that she had had to limit contact with his dad because it had become relentless. She said: “If I were you, I wouldn’t tell him anything. Do what you need to do.”
So I did exactly that. And strangely things improved for my son. The less I told his dad, the more I worked independently from him the better things got for my son. I told his dad nothing except the absolute bare minimum. I took the approach of the grey rock. The grey rock is a communication strategy where you use the least words possible. You answer factually and not emotionally. You do not get involved. And that helped.
But over the past year, his dad repeatedly tried to restart an “ADHD/Autism thread,” emailing me about my son’s diet, sleep, and day-to-day behaviour. I ignored it all. It was hard — it goes against my nature — and it certainly doesn’t feel like healthy co-parenting. But it worked for my son.
As the assessment drew nearer, though, the pressure ramped up again. His dad, clearly feeling the anxiety around this assessment too, sent a polite email (the tone of this one was markedly different to the other emails) asking about nightmares, then added questions about sleep, diet, and routine but I knew this was the ADHD/Autism thread in disguise. I knew what this was really about: gathering information to contradict me in the assessment.
I tried to ignore it — but more emails came. At the same time, work was overwhelming, my daughter was struggling and sleep was very scarce. Everything collided at once. Honestly…
Life is hard.
Life as a parent is hard.
Life as a separated parent is hard.
Life as a parent of a ND child is hard.
Life as a separated parent of a ND child is hard.
Life as a seperated parent of a ND child with a coparent who isnt even in the same book as you is hard.
One night, my husband looked at me in alarm and asked if I was okay. My face, neck, and chest had erupted in a deep red rash — my body saying what I couldn’t (Or maybe it was the new face cream I had bought that was made out of beef – yes you read that right- I was desperate to remove the years of sleep deprivation from my face I had resorted to putting cream on my face made out of the finest steak!!)
The communication from his dad kept coming over and over again. Then came an email threatening legal action if I didn’t reply. It didn’t scare me. It just felt like one more battle I didn’t have the energy for. So I replied calmly and briefly — the “big grey rock” approach: factual, unemotional, and minimal.
But it pulled me straight back into the assessment spiral.
Round and round my thoughts went again. We were so close — yet so far.
What would happen? How would I feel afterwards? What would this mean for my son?
It felt like so much was riding on it.
Update: February 12th – Still Waiting for NHS Autism Assessment
At the time I am publishing this, my son still has not been seen for his assessment nor is he even booked in for it.
I contacted our NHS Right to Choose provider to ask for an update. Their response was as follows:
“Due to recent changes introduced by the Integrated Care Boards (ICBs) relating to Indicative Activity Plans (IAPs), healthcare providers have been given fixed monthly limits on the number of assessments that can be completed.
These capped activity levels are currently impacting our service capacity and, as a result, affecting our waiting times.
We are working hard to reduce our waiting list; however, with the new restrictions in place, we are unfortunately unable to provide an estimated waiting time at this stage.
Please be assured that XXXXX remains on our waiting list. As soon as an appointment slot becomes available, our bookings team will contact you by email with the confirmed date and time.”
I honestly didn’t know whether to laugh or cry. This is the reality of NHS autism and ADHD assessment waiting times in the UK right now.
If you’re searching for information about NHS autism assessment waiting times, I hope sharing our experience helps you feel less alone. The wait is excruciating, but you’re not going through it by yourself.
So we wait again. It meant I could go back to living in limbo which as hard as it was was nowhere near as hard as the anxiety I felt around the assessment.
And maybe February would be a better month…
Resources for Parents Waiting for NHS Autism Assessment
The NHS autism assessment waiting times crisis affects thousands of families across the UK. If you’re in the same boat, these resources might help:
UK Organizations:
- National Autistic Society – Information and support
- PDA Society – PDA-specific guidance
- IPSEA – Special education advice
Related Posts:
- What’s On Your Mind? – The mental load of neurodivergent parenting
- Does My Sister Love Her Friends More? – Sibling relationships and emotional development
Are you waiting for an assessment too? I’d love to hear from you in the comments or get in touch
