ASD diagnosis in adults

[Florafog]

I didn't know where to post this so I'm going to post it here since there seems to be a larger traffic.

Have you been diagnosed with autism as an adult?

I've come to the realisation that I need to seek out a diagnosis for myself. I have suspected for almost a decade that I may have ASD but wasn't sure if it was worth being diagnosed. But I'm struggling with many different aspects of my life at the moment that I think I need to get my head out of the sand and accept that I need help.

Can I ask that if you have been through the whole process, where did you start? What happens? And did having the diagnosis help?

Also, I know there can be long waits for getting a diagnosis so is it worth going private? I can possibly scrape enough together for a private consultation. Will the NHS accept a private diagnosis of ASD?

Apologies for so many questions.

I was diagnosed in my mid 30s. I’d always known I was different - struggled socially, sensory issues...saw a MN thread much like this, I read the Tania Marshall profiling for ASD in women and it was a “lightbulb” moment. Some people are happy to self-diagnose but I wanted to know for sure. So I wrote a list of evidence, went to my GP and asked to be referred. My GP was skeptical, she genuinely said Well I don’t think you are but if you really want me to, I’ll refer you. It was a long waiting list (18 months at the time, they changed how they assessed it while I was waiting. I had a DISCO assessment where an LD nurse came to my house and asked me questions for about 2 1/2 hours...I masked to start with but I couldn’t maintain it for that long! (Questions about childhood, current issues, work etc)
Kind of helped with the assessment. She then put all the information into an algorithm and came back another time to confirm the diagnosis. I was so relieved I cried - I finally understood why I am how I am.
I chose to go via the NHS because I didn’t want to spend money only to be told I didn’t have ASD! You can go the private route or you can go to some Autism charities which will do it for a subsidised fee. I think for adults it doesn’t really matter how you get the diagnosis. I declare I’m autistic when I feel the need to and no-one has asked for evidence of who made the diagnosis!
I can honestly say it’s been life changing to get my diagnosis. I used to be so cruel to myself for not being “normal”. Now I understand why I am like I am. I’m not afraid to speak up at work about my needs (I have disclosed to them). I give myself permission to relax rather than saying I must be busy all the time, I find a balance more easily. Last time I went on a plane I wore a lanyard and took advantage of the fast track queues and boarded the plane first...sounds like small things but I’m anxious about queues and flying and those differences made it a much more positive experience.
Honestly if you think you are, I recommend requesting an assessment. There’s been no downsides for me.

Lots of it will depend on your area.

In my area it's not too difficult to get a referral to the team but the waiting list for the assesment was about 18 months when I was referred but I think is closer to 2 years now. I went to gp, gp referred me to the team (the referral went via the community mental health team as I think they triage them)

The assessment asked for some childhood history from someone that knew me as a kid and a couple of questionnaires. I think it took about 2 hours but I cant remember!

Our service is very much just about assesment and diagnosis rather than follow up support unless you have other significant mental health problems so pretty much most people then just get a letter confirming diagnosis and that's pretty much it.

I think it's worth having a think about what the diagnosis would mean for you. That sounds weird but personally having it confirmed hasnt had any significant change for me except that I wanted some reasonable adjustments at work and it helped me get that. I'm not sure what I expected, but I think I thought that suddenly everything would change but realistically I'm just the same person I was before as I was already pretty sure i would meet the criteria so had been using suggested strategies from google anyway.

I am not sure what you mean by will the nhs accept a private diagnosis? They will record it on your notes I would imagine.

Thank you both for the replies. @NooneElseIsSingingMySong I have just gone to read Tania Marshall's ASD profiling and what a revelation, I could have ticked almost every single suggestion. There were things that I haven't thought of that I agreed with and made sense as soon as I read them. Thank you for that recommendation.

I'm not sure I know quite why I'm seeking a diagnosis now. Probably as I am struggling with other parts of my life just now; long term depression which I've only just sought help from the GP for and maybe a diagnosis now could help answer some more questions going forward etc.

Had my diagnosis a few weeks ago. I wouldn't say it's absolutely life changing, but it has made a big difference, particularly with work anxiety. I've been able to explain to my colleagues why I struggle with some aspects of the job yet can do really complex stuff. I've had support put in place which helps enormously. Mostly, it's validation that I'm not just shit at life. I had mine done privately. One consultation, one occupational therapy session and the ADOS test. Be warned that the report can be hard reading, but I've got my head around it now and have accepted that this is me. I'm 50.

I'm in my 50s and I was diagnosed last year. In my area, it's a self-referral service. I had to fill in some questionnaires. Then after a few months I had two online sessions with two different people, one of which was a conversation so it didn't feel like an assessment (but it most definitely was!). After a couple of weeks I received a letter confirming my diagnosis. As a PP said, it's not an easy read!

It's helped me understand why I am how I am, why I've always felt different, and to be kinder to myself when I struggle with things that are normal to those that are neurotypical.

I have disclosed to my manager at work but asked him to keep it between us. I'm finding it hard to get my head around that I have what's considered a disability as I've always been seen as "capable". I thought it would be helpful for both me and my manager for him to be aware of my diagnosis. I have also disclosed my diagnosis as part of the application process for a job that I've applied to: if it helps, why not?

Thank you for the replies.
In terms of seeking support etc in the workplace do you need a formal diagnosis to request support? I'm not working at the moment but I know I struggle with certain things.

Regarding work I think it depends where you work. I work in the NHS so I think they’d only agree to reasonable adjustments if I had a formal diagnosis.

I didn't need an official diagnosis but it's useful for occy health