Seeking Diagnosis in the UK: My Diary

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ArielsSong - all the best in your search. I'm glad you had an understanding GP, mine said that I had obviously learnt to cope and was intelligent enough to support myself and therefore the NHS wouldn't fund a diagnosis. I was like you, and spent a while oscillating between "yes I do" and "no I don't", and having an unsupportive GP didn't help! Either way, you have to know!

Hogletia - If you get a choice, I recommend finding someone who has experience of diagnosing women. There are gender differences that not all doctors will be well-versed on!

Hmm! I've just got back from the appointment with my GP to try and get a referral. My GP was very sympathetic and seemed genuinely interested in what I had to say, which is good.

I was hoping to be referred to the Sheffield Adult Autism and Neurodevelopmental Service, but I was told that they couldn't get funding because I live in Derbyshire (even though I only live 12 miles away from Sheffield!).

I didn't get a choice unfortunately and have been referred to a local mental health team in Matlock. I'm obviously worried that they are not qualified to give me a diagnosis. I was hoping to get someone who had particular knowledge of diagnosing autism in adult females, but now it looks like I may be going somewhere who doesn't specialise in either females, adults or possibly even in autism.

NHS funding is currently a mystery to me, but it's obviously something I need to research

Hi Sai and Ariels Song,

Thank you for your replies.

At least my GP was helpful and agreed to refer me, which was a good result.

I'll see what MH say and take it from there. I'm not sure what happens next exactly, my GP didn't seem to be totally sure of the procedure either. At least if it doesn't work out, I can go back to her knowing that she'll be on my side.

I might be able to go private, but I would prefer NHS ideally.

Came back on here as I have been going through a rough patch recently with no motive aside from chatting and within a few days I think I have decided to try and get assessed, inspired by 1 or 2 of you. I have private healthcare through my work, phoned them yesterday to ask if Aspergers would be covered and after a lengthy chat they said yes they would cover me.

I need a referral from my doc now. They referred me 3 years ago but I opted out at the time for various reasons. Need to go back and ask for another referral. Nervous I won't get it this time.

Hello to everyone in this thread.
I suppose I want to say sorry, ArielsSong, because I walked right by this thread, so to speak, and posted a dry version of the same kind of thing in the In-depth Adult Life section. I didn't look carefully enough. I was diagnosed recently and recognise the cycles of feelings expressed here completely.

I'd like to be helpful, but also concise. So I have to think carefully.

My first suggestion would be to spend time calmly and freely thinking over as much of your early life as you can remember - through youth up until the present. Form yourself a little file of memorable little incidents and tendencies throughout your life - like having to work out examples for a job interview - except nothing like a job interview, not least because you need not suppress the stress! I'd personally say that close to the event is the time to lay aside test scores, comparisons with others, research, perhaps the internet itself, and immerse yourself in simply your personal history.

Nobody else but me was involved in my assessment, though my girlfriend was requested as a sort of stand-by in case of follow-up assessment. She wasn't required in person, but an objective report of our relationship and her reactions to me were. A list of frank impressions from someone close to you should be very useful. You could get your husband to summarise your characteristics and any issues that arise from them.

I think you were wise in the opening of the thread to reserve the right not to explain everything fully. I think it's important that actual assessment is a sort of very awkward little masonic lodge or something. However, though there are elements to assessment that could conceivably be outright embellished-through, I'd say that the nature of perhaps more than half of it depends on observation of thought processes that'd be extremely difficult to willfully change. To help your focus, perhaps avoid trying to understand what it is they are assessing at any given point.

At the same time, getting stressed, caught-up or acting unnaturally (by your own standards) will not interfere with your assessment. It's OK!

The reason I'm lingering on that point is that one of the powerful feelings of the cycle in the run-up is now more frequent post-assessment. That is, what was, This is just unnecessary, I've known a couple of people with Asperger's, and there's no way they're going to diagnose me has now become, simply, This was clearly a misdiagnosis.

But then the feelings cycle on, and I'm reminded of a line of yours from your husband - I didn't spot it again in a skim-read, so I'll paraphrase - that, essentially, you are not as good at presenting normally as you think.
The dark/light sense of the future is exactly as changeable in me now as before the assessment. The giant watershed (that I fantasised) didn't happen for me. Hasn't yet, anyway. But the thing it made me realise, and deeply, and to some distress of mine, is that my previous sense of razor-sharp, high-beam, infallible self-awareness was a total, comical and lifelong error.
Today my diagnosis makes sense to me. Yesterday, despite having a terrible day, I was sure they were mistaken: I must be some kind of schizoid... I've just been depressed too long! etc. I've been comforted to read other people explain their doubts afterward. I mean to tell some of them that it is a comfort to read.

The service were very clear that should their assessment not support diagnosis, they would refer on to a service that could further investigate and give their opinions on alternative routes.

I was not told their decision on the day of my assessment, but I believe some people are. I mention it in my long description elsewhere, but I have never felt calmer than the moment I saw their diagnosis. The feelings of both desperation and doubt in the lead up to knowing the result were very intense. At the last second I was convinced that I would have welcomed a does not meet the diagnostic criteria... more than anything. Perhaps that was actually true.

As I feel now, I know that under no circumstances, excluding a tribunal following something unpleasant and inexplicable, will I be informing my employer or colleagues. There was once a man hush-hush "known" to be ASD and I heard how they talked, including - if not especially - management. I am simply not a good enough advocate for myself and in the one previous case exposure did nothing for peoples' understanding at all.

I wish all of you very well.

All the best, ArielsSong.
I hope you get some real insight from this, and that you don't end up having to wait long.
At the very least, it's interesting to finally find out what the process is.

I hope it's somehow cathartic, too - I remember I left the building feeling like a hollowed-out melon.

I received my diagnosis today.

The process was very intense. That's the best way of putting it. It felt like non-stop question after question - a big interrogation - but I believe I handled it very well. I was certainly put at ease, as much as I could be in that situation. There were definitely a few things that I forgot when I answered questions, and my husband filled in the blanks for me, which was helpful, but otherwise he was very rarely involved - I found the questions quite 'easy' to answer from a 'digging the answers out of my brain and explaining myself' point of view, which is a rarity in itself!

I know I was shaking the whole way through. There was a lot of adrenaline. I was shivering by the time I left the office and went back to my car. But I didn't get to full tears. I handled it all quite well, almost cried when I received the diagnosis but I am not entirely sure why.

There wasn't the rush of relief I had expected, at least. I was already so sure, so it did just feel a bit like 'Yeah, that's it, there we go'. I was nervous about telling people but have announced it to my friends now, and a few family members, and just have one or two more people to tell. I decided that it was best to be open and honest straight away with people, throwing myself into it, and then if anyone did have a problem they could get off the ride now rather than me telling them at a later date when I may not have had the adrenaline to help me through. Everyone has been lovely about it, which is fantastic. I hope that I can be more comfortable being open about in in the future, slowly bringing that aspect of me into 'public' knowledge, without making a big deal of it, so that I am never in the situation again where I become friends with someone and they're not aware and I feel like I need to 'announce it', so to speak.

It's a weird situation at the moment. Very practical, not very emotional, not exactly how I expected, but I prefer this feeling of 'detachment' for now.

Congratulations? I assume you mean a diagnosis of autism? What type of autism and/or what level if you don't mind me asking? I know when I did testing for autism I was very stressed out, along with being super anxious. I did the ADOS module 4, and I made the cut-off criteria for autism with that, along with having trouble with cognitive flexibility, inferential language, theory of mind (abstract theory), and a bunch of other stuff. If you are interested, I can post a picture of what it says about the diagnosis of autism for me.

For me, my parents told me to not tell other people because they would judge me for it, but I told myself I would tell others because if they judged me for it then they aren't my friends.

I have read your whole thing, just never posted because I'm not in the UK, I'm in Canada. I had to (my parents) pay thousands of dollars for my assessment, but it was very thorough. It checked for basically ALL neurodevelopmental disorders. My next step is to see an OT, because every single thing that came out of this assessment links back to autism. OT is a good thing to do if you have autism I believe.

Hopefully you'll get back to me soon, and at least you know now