Assessment delays

I did the same and got it done quickly privately. I needed to know what was wrong at the time so I could decide what to do about my job and life. I had to know if I had burnout and how to fix it and how to deal with intrusive thoughts of the past.

Not at all, knowledge about all this will only help! It sounds like a good idea to start a diary with symptoms, so I can start to see patterns and if it's increasing. It being called 'a prefect storm' is rather alarming! I've always had very variable periods too, it was tricky getting pregnant as it would swing between 3.5 to 5.5 weeks, so that factor too would make it hard to tell, but record keeping sounds like something I need to do.

Thanks so much, it was meant to be a thread about helping you, but I feel you've helped me more! 

I'm sorry. I don't mean to scare you. It is horrendous but for warned is for armed! Keep a diary and if you notice your anger and overwelm increase, come back here. Happy to share my experience but its different for each women but help is available and you are most definitely not alone! Just keep in touch with others. Nhs say you're too young but thats rubbish! There's not enough research to support that arguement.

 I knew it was going to be a big thing previously from the very limited information I knew about it, but after finding out I'm autistic this year and that it can make the whole thing, both menopause and your autism much, much worse, it feels even scarier.

pintsizepirate said:

the right HRT that works for neurodiverse women.....it

I've heard of HRT but only recently listened to a podcast that said there are different types, and I didn't know being autistic would effect that too, though it makes complete sense! 

I find getting any help from the NHS is like swimming up a waterfall, especially as I get extremely anxious about having to get an appointment and often put things off for years. I can hear the trauma in your post trying to get the right help for what should be fairly straightforward with a professional with the right knowledge.

brace yourself......it's an unimaginable *** show! the last two years, fighting for help have felt like a psychosis. it's only through ignoring male 'professionals' and doing my own research have I found the right female professionals and medication / treatment. 

everything is a constant battle which is offensive. Jesus, men can buy viagra over the counter but to get the right HRT that works for neurodiverse women.....it's ridiculous! the rage! not sure if thats actually menopause or reaching that stage in your life when you've just had a enough! it's the lack of organisation and professionalism that gets me. anyone working in the NHS must have compassion fatigue, exhaustion and burnout themselves. its broken and unsustainable but private is no better. 

If someone is hit by a bus, A/E will patch them up fast.  For everything else, the waiting times are really long.  

So for neurodiverse people, we arent in constant pain or have a life threatening illness.  And there isn't a cure for what we have.  With limited resources, they have tough decisions to make and I totally get that.

I had a private ASD and ADHD assessment which cost 3k.  It has been worth it for me, because with a formal diagnosis, I can ask my employer for reasonable adjustments at work.

pintsizepirate said:

hitting perimenopause has been explosive and amplified symptoms beyond what I ever could have imagined

I'm at the point where it could have been a factor in my burn out, but also might not yet. I don't think I have hit it yet, but the combination is meant to be awful. I feel like a ticking time bomb. If that's a factor for you, you really have my sympathy as it must feel like it's spiralling. :(

And yes, women's health is seriously overlooked and often we are left to make do the best we can, which isn't how it should be.

thank you. 

you're right, its a mess and only going to get worse I fear. especially as the media peddle such a dangerous narrative. 

I was praying for the assessment to be in jan as I have to move in the new year to Wales which is a completely different set up. another thing to add to the list but I think a chat with GP and referral to Maudsley would help in the short term. fingers crossed. 

women are being abandoned! hitting perimenopause has been explosive and amplified symptoms beyond what I ever could have imagined. We know neurodiversity diagnosis never comes on its own so there is a long list of additional conditions I have been diagnosed with that the GP does nothing about. Just fed up of how women's health is ignored. it's not as if we've just arrived on the planet!  hey ho, we soldier on. 

thank you, that's helpful. 

If you can't go private I don't think there is much you can do. I pointed out on the Streeting thread that there are 13 times more people on the waiting list than in 2019.

The NHS is supposed to be recruiting another 8,500 people for mental health, but I don't think many will be psychologists, so it may not help the queue much.

Here is some info from chatGPT (the new numbers are accurate):

.

Official reports confirm that 13 times more people were waiting for an NHS autism assessment in September 2025 compared to April 2019. 

This dramatic increase reflects a worsening crisis in autism diagnosis services across England, driven by soaring demand and insufficient capacity. 

Key details on the waiting lists include:

Total Waiting List: As of September 2025, there were over 227,000 patients with an open referral for suspected autism.

Waiting Times: The average (median) wait time for an autism assessment has rocketed, with recent data from November 2025 showing it is over 16 months. In comparison, the median wait was over four months in late 2019.

NICE Guidance: National Institute for Health and Care Excellence (NICE) guidance states that an assessment should begin within 13 weeks of referral, but data from March 2025 indicated only 4.5% of patients received an appointment within this time frame.

Regional Variation: There is a significant "postcode lottery" in waiting times, with some areas having vastly longer waits than others. 

Charities like the National Autistic Society are calling for urgent government action and dedicated funding to address the growing crisis. 

pintsizepirate said:

What do I do? What are my options?

I don't think there is anything you can do to change the delayed date as the services are heavily oversubscribed and it won't take much for them to have delays (eg losing one of the assessors).

pintsizepirate said:

Surely, they can't abandon patients like this? Don't they have a duty of care? 

I don't think this goes to the point of abandoning you - they have notified you of a delay and they will be trying to get the staff to cover it so you probably have to wait until they have the people to do it.

If you are desperate for it then a private assessment is the only way to bypass this situation. It will cost in the region of £2k I think but should only take a few months. I would check with your GP that they would accept the diagnosis from the company you intend to use first as I have heard of then refusing to add private assessments to your NHS medical record.

The NHS has a heavy backlog for diagnoses even through the Right To Choose route and I expect this sort of issue will be not uncommon.

pintsizepirate said:

My life has been on hold waiting for this

Is if that you need to know that you are autistic or that you need the diagnosis to access some other service?

I think the whole system seems to be a mess at the moment with several years long waits for adults. That is if they do them at all, in Scotland, a lot of areas simply have no service for adults at all, it's just self diagnosed or private if you can afford it. England is the only region in the UK with Right to choose.

Though that doesn't mean you have to give up on yourself. I think there is still a lot you can do for youself even without an assessment. Talking helps to feel better about your experiences, and there are books to read to learn more about dealing with your issues. You can ask for accomodations at work even if self diagnosed, so have a think about what it is you are having problems with and I would try to find ways to help yourself in the mean time. The system is a mess at the moment so you aren't alone in finding it difficult.