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. )

You could consider changing GP? I picked a particular GP to speak to about my concerns as I felt some I'd spoken to about my anxiety were very dismissive.

Been playing with the new toy - £26 well spent!!

Are you making anything at the moment?    Any projects on the go?

My sister has written a letter a life story kinda thing about me, she wants me to send it to my GP but Im tired of all the rejections I really think they are tired of me and dont want to know any more.

I was thinking about sharing it on here but it may be too personal and upsetting for some.

Sometimes I just dont know what to do for the best.

it all sounds so much fun, and yes the sculptor on there is awesome.

Well thats another day here and atleast its not raining yet hehe.

I feel so much for you! I felt like this for so many years. I gravitated toward philosophy, as I see patterns everywhere. Symbolic logic helped as did other disciplines. But I was always trying to survive financially and constantly ill so I couldn't focus on becoming skilful at a something I was good at. I had to work out what I was allergic to, and found out I was coeliac. Creating a stress free environment helped. I took out all the LEDs and put in more natural lights. Living with very little 'stuff' makes me feel less crowded. Learning yoga helped, it can be methodical and aid a practice of focus. Some find spiritual practices are good to, just for getting to a less stressed state mentally. I feel like I needed to get rid of all this unnatural stuff society demands and create space to just sit and be me in my own world, spending time getting lost in art or reading. From there, life can be a little more tolerable. it's great you have a sister who recognises this about you. 

Make a complaint if you feel that you arent being taken seriously. I could self-refer to the autism service in my area but I didnt know this until I spoke to my GP but she still took me very seriously. It isnt fair that the services are a postcode lottery. 

Hi Valgal,

Thank you for sharing some of your story with the community. I'm sorry to hear that you've had a difficult time feeling understood. You may like to contact our Autism Helpline team who can provide you with information and advice.

https://www.autism.org.uk/what-we-do/help-and-support/helpline

You can call them on 0808 800 4104 (Monday to Friday 10am to 3pm.Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an adviser.

All the best,

ChloeMod

I'm into synths too - I've literally just received a Korg DS-10 from ebay this afternoon - it's cool - a couple of analogue synths, drum machine, effects unit and sequencer in a Nintendo DS cartridge - I'm gonna have fun with it!   I can't read music either but I know/  can fake enough to be able to create electronic music - think very old Depeche mode or Human League (Pre Heaven 17).

I also do Technical Lego, huge RC models boats, Airfix models and any other nerdy / techy stuff.  

Do you watch Salvage Hunters- the Restorers?    The sculptor on there blows me away!

I seem to jump from hobby to hobby so quickly its like i need to know it all in one go hehe. 

My profile pic is a sculpted fairy I made years ago, super sculpey  was my thing.

I like to play electric piano and synthesizers with a guitar looper pedal and make ditties small tunes yet I can not read music.

And a strange hobby came about after holding a baby doll that someone had painted and weighted to look and feel freakishly real. I felt something that I had never felt before, I felt calm and safe.

I started sculpting life size babies with clay limbs and cloth body my partner at the time owned a shop, every baby made was sold to nurses and midwives and some as far as Hong Kong.

Not so creative these days as its hard to stay focused but I try

What do you like to do hobby wise :)

Please let us know how it goes, we are all here for each other. Love that you draw, so do I, it's one of my escapes.

thank you I can do that

With your sisters help could you use the contact form on this site to gain advice, then you could speak via email. Would that be better for you?

I could have been the quiet one - I just decided not to be.     It's all a big performance - I probably deserve an Oscar for "most convincing performance in the role of normal person"    Maybe an MBE too  

It all came at great cost - I developed a stress-related health problem 20 years ago.

What do you do to relax and wind down - do you still draw?

Hands up I was the quiet one who got targeted by the bullies but most of the time I had my head stuck in my sketch book with a pencil.

I'm a twin too - I had a 'working version' of me to copy and measure any time I couldn't work out what was going on.       I was very independent thinking and couldn't understand why the 'normal' people did all the crazy, chaotic things they did and weren't able to solve simple problems.

By around 12, I'd decided to create a huge extrovert personality so I could be loud and 'eccentric' rather than a quiet target for bullies.

We were always treated as a composite person so my quirks were covered up by his normality.   I was only diagnosed in my 40s.

Hoping it goes all well for you, my gp can not help thats why im here.

Thats a problem for me talking on the phone I need help with it and dont have any, so im kinda stuck hehe.

Also have trouble understanding and finding it hard to get around the website.

Yeah my sis helped me with one of these online question thingy it was a struggle understanding half of the questions but I did score enough points.

You describe life perfectly, 

Having a Twin thats how I coped with it, when meeting people i  always stood behind my sis, she did all the talking.

 Life just got harder growing up, I was holding her back at school so they put us in different classes. 

It didnt go well after that.

Hi Val, I've had my assessment denied due to lack of funding. My GP and I are making an appeal, perhaps you could also? Best of luck. I would also say speak to NAS helpline as they would be able to advise you.

Have you had a dig through the standard questions that you would get asked at an assessment?      It might be worth googling the tests and see what chimes with you.      The 'brain lock' you speak of is very common - always unable to say what needs to be said.    

A diagnosis might unlock some benefits and local support - but that support may be minimal or non-existent

I always explain to people that my life is like living in a noisy, smelly Vegas casino 24/7 - it's all just too much of everything - I'm overloaded in every way.