NHS say no to adult autism diagnosis

Hi Val, It's a bit of a lottery depending on where you are, sadly. I was diagnosed about 5 years ago, in my 40's, but it did take me well over a decade to find the energy to seek and find someone capable of diagnosing adult females.

From referral to diagnosis appointment took around 18 months, but I'd approached my GP in the past because I was pretty certain that this was my issue, having seen the same traits in my kids and read a lot since then, and every time I had a mental health crisis I'd think about seeking diagnosis again, but my original GP said she knew nothing about autism in adults, let alone females, and only referred me to a local autism charity for support.

Eventually I managed to see a younger GP who was willing to listen (or read, as I wrote what I wanted to say down, because I knew I'd mess it up otherwise) and she referred me- I was hoping for The Lorna Wing centre, as I knew they were the forerunners of diagnosing women, but in the event it was Psicon in Canterbury who covered my area, and after a fairly long wait, I was diagnosed. I was a bit of a textbook case, apparently. 

I knew adults worldwide from online groups and heard many tales of them being refused funding, or being turned away because of 'looking too put together' or having a decent job, or having a family or a partner, or pretty much anything that didn't fit the stereotype of a typical male autistic adolescent. Some appealed and won, others didn't bother. Some who could afford it went private. One friend drove across Australia to her diagnosis appointment.

 
I totally understand about lockdown. My kids and I are all really struggling with the changes, and now with 'real life' kicking back in again it's a whole other stress. It's been so quiet and low-key lately I'm not sure I can cope with the resumption of 'normal life' any more. 

It does sound to me as if you're autistic- and if you have any charity-run support groups near you (I have one, luckily) then they don't seem to require a formal diagnosis to be accepted, and can be a great source of support. As can online groups if you can face it- I can't, currently.

We're having monthly Zoom support meetings with other autistic women though, and that does help. 
I'd keep pestering the NHS if you can find someone to help you, and have the mental energy it takes- stress that you NEED to know for the sake of your mental health, because they seem to think that diagnosis is pointless for adults if you've 'coped so far' (even if you haven't) but it really isn't. 

For starters, it helps to redress the wonky statistics regarding adults ( and especially females) with autism, which helps those coming after, it enables you to seek and hopefully find appropriate support groups, to learn how to manage your stresses in an appropriate way, and also to be able to disclose if necessary, which can be really helpful when you're struggling. 

Also, although this is anecdotal, both my GP and ex-psychologist agree, that medications often seem to work differently in autistic people, as do anaesthetics anecdotally, and as we respond differently to lots of stimulus too then it's good for healthcare providers, carers, employers etc.. to be aware so this stuff can be dealt with in a helpful and appropriate way. Autistic adults are also prone to certain health issues (EDS, fibromyalgia, gastro issues seem to be a few) and it can again help if you and they both know about your autism. 

Stress all this (and how much it could potentially help your mental health- potentially saving a LOT of money in meds etc... for the NHS) and keep asking if possible. There are some charities I think- Action for Aspergers was one- who do do diagnosis appointments at a reduced rate from the normal private ones, but it's still far from cheap or affordable for many. I did look into this but luckily was diagnosed on the NHS in the event. 

Good luck, and I really hope you get the help you need. Writing everything down, or getting someone you know to help can be a good thing when dealing with healthcare providers. I can never say what I want to say under pressure either. 

(I wish I could say that people understand me better post-diagnosis, but sadly they don't.

I understand myself and my kids somewhat better though. )

Im away to send what my sister wrote for me to the Dr I hope she listens this time, if not ill send it to another Dr but its knowing which Dr would be ideal.  Thank you :)

Im away to send what my sister wrote for me to the Dr I hope she listens this time, if not ill send it to another Dr but its knowing which Dr would be ideal.  Thank you :)