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Original poster

Getting an autism diagnosis in adulthood

48 replies

Doorrunner · 26/10/2018 19:54

This is something I keep coming back to. I have a strong feeling that I have autism. I'm in my mid-30s. My DC is autistic.

Can anyone share their experience or knowledge on this process? I'm looking at going down the private route rather than NHS. I wouldn't even know where to begin or an estimate on cost. I live in the South Wales area.

I wouldn't 'use' the potential diagnosis for anything. Truth be told I probably wouldn't even tell people. I just feel I need closure and as the years have gone on I can't seem to shake this issue off.

OP posts:
wrenika · 26/10/2018 20:20

I'm going through the process right now but it's through the NHS. I was given an initial test years ago while attending therapy for severe anxiety. They confirmed that the initial test showed I was highly likely to be autistic but there was no adult services in that area so it couldn't be taken forward.
Now that I've moved and I'm living elsewhere, my anxiety has become worse and along with medication, I have been referred to go through the adult autism diagnosis process (since it is available here). I have my first appointment on Tuesday, which will be a 90 minute appointment. I don't know much about what to expect, but they gave me a questionnaire about my early life which I had to get someone who knew me as a young child to complete. I have to bring someone with me to the appointment who knew me as a young child, so my mum is attending with me.
I don't know how many more stages come after this, and I have no idea how much this would cost you to go private.

Original poster
Doorrunner · 26/10/2018 20:35

Thanks for sharing your experience wren. I assumed it would be a lengthy process, it certainly was when we went through it with DC.

I wouldn't want to take a family member/parent although I guess it makes sense.

Good luck with your diagnosis Flowers

OP posts:
HawkeyeInConfusion · 26/10/2018 20:45

I went through it a year or so a go. It took time, but mainly just waiting.

I spoke to my GP and he sent a letter requesting assessment to the local NHS assessment team. They sent me a questionnaire to return - which I did. There was then about an 18 month wait before I got an appointment for an assessment session. The session took about 3 hours. I didn't take anyone with me - they said it was sometimes easier if you do, but it wasn't compulsory. The assessor told me that sometimes they give the results there and then. Sometimes they need to confer with colleagues in which case you get the results a bit later.

To finish it all off, there was a letter to my GP, copying me, with the outcome.

Original poster
Doorrunner · 26/10/2018 20:55

Thanks Hawk. I keep swinging between feeling desperate to know for sure so I can have closure on how my life is and then feeling so overwhelmed by the idea of getting a diagnosis I shy away from the whole idea.

I don't know why I feel the way I do. I think with a diagnosis my whole life would eventually 'make sense' so to speak. Gah, I just don't know Confused

OP posts:
HawkeyeInConfusion · 26/10/2018 21:05

I felt similar Doorrunner. I am not doing anything with the diagnosis, but it has helped me make sense of my life and has given me some sort of peace for being 'me'.

Original poster
Doorrunner · 26/10/2018 21:11

Yes that's it spot on. I feel my whole life doesn't make sense and a diagnosis would be a 'light bulb' moment. It would give me so much self-acceptance but I don't know if I've got the fight in me.

OP posts:
Hawkmoth · 26/10/2018 21:16

Oh my, I've just been referred. No way on earth would I want my mum there, that's completely bonkers.

TeaandSunshine · 26/10/2018 22:23

My mum couldn't travel to my assessment, but she completed a form about my childhood. They need input from somebody who has known you since you were very young as the signs of autism need to have been present all your life. It's not essential, but it helps them a lot

siakcaci · 26/10/2018 22:29

I'm in the same boat. I haven't anyone who could come with me though so I feel they wouldn't be able to diagnose just on my word 

I have 2 children with autism, the more I read the more it just shouts 'this is you'

WhyAmISoCold · 26/10/2018 22:31

I did it OP. I was honestly expecting them to tell me I was fine. I was diagnosed with aspergers. I felt shocked, but relieved that I had an explanation for my struggles. Go for it. I haven't told my family either.

siakcaci · 26/10/2018 22:37

Is it really hard? The questioning?

It was really tough trying to go over the DC's info, I can only imagine when it's about yourself it's even harder

AllViewsMyOwn · 26/10/2018 22:41

I went through it really quickly compared to everyone else, it seems. First appointment and questionnaires, then I had an appointment with two psychologists that lasted around 2 hours, it was intensive questioning. I was given the diagnosis the same day.

AllViewsMyOwn · 26/10/2018 22:42

I should add that I was referred to mental health services as a 'shortcut'.

Nat6999 · 26/10/2018 22:42

I was referred at beginning of January for Autism assessment, I've had a letter confirming that I'm on a waiting list months ago, how long am I likely to be waiting?

AllViewsMyOwn · 26/10/2018 22:43

Whole thing only lasted 2 and a half months

TeaandSunshine · 26/10/2018 22:49

I found filling in the forms to take with me incredibly stressful, far more than anything I had to do for my DS. I nearly cancelled the appointment several times as I was falling apart, but I knew I would regret it if I did.

The assessment interview itself wasn't too bad for me, although I doubt I would have gone without DH with me for support.

I'm very happy I did go though with it though, it was worth it

BaldricksCoffee · 26/10/2018 22:58

What happens if you don't have anyone who knew you as a young child - how are you supposed to be able to answer the questions?

TeaandSunshine · 26/10/2018 23:04

Just answer them with as much as you can remember yourself about when you were young

Original poster
Doorrunner · 26/10/2018 23:14

Thank you everyone for sharing your experiences.

I'm totally off the radar with my mental health. Despite struggling my entire life with anxiety I've never sought any help, ever. On my medical records I must be a picture of health. I've always been far too anxious to actually get help and on the very rare occasions I've cried for help it's always been dismissed somehow. The irony would be hilarious if it wasn't so tragic Sad

OP posts:
Mormont · 26/10/2018 23:28

OP google Integrated Autism Service Wales. You will find information about adult assessment in Wales.

Original poster
Doorrunner · 26/10/2018 23:38

I've had a look on their web page but can't seem to find information on how to go about getting a diagnosis

OP posts:
Misty9 · 26/10/2018 23:46

Someone close to me is going through assessment, initially through the NHS but that took months just to have a screening questionnaire by post and then there's a 4 year waiting list for formal assessment Shock so they're going down the private route and it's costing £550 for a 3 hr assessment with a psychiatrist.

You can do the EQ and AQ (emotion quotient and autism quotient) online and they are usually the screening questionnaires. They give the same reason for wanting to know, just to know as they don't need support or help really.

First step is definitely your gp though.

Misty9 · 26/10/2018 23:48

It doesn't look like the integrated service in Wales is up and running yet. Your gp should know how to access assessment.

SputnikBear · 26/10/2018 23:52

I’ve wondered the same. I’ve never had any friends and people don’t like me. I’ve struggled to get hired for jobs because employers don’t like me either, some have admitted that they disliked my personality and I made them feel awkward and uncomfortable. There’s clearly something wrong with me and I’d like a diagnosis just for closure and to give me a way to move forward. Because if I’m not autistic then the only other option is that I must be an awful person. I darent approach my GP though, I’m worried they’ll laugh me out of the room. Or maybe just say that a diagnosis won’t change anything so it’s a waste of NHS resources.

siakcaci · 26/10/2018 23:56

That's how I feel sputnik

I struggled to get jobs as I don't interview well. I am self employed now, mainly because I prefer to work alone and although my job entails contact with lots of people throughout the day. It is minimal and without expectation.