My ASD Diagnosis Journey as an Adult

I went with a list of my autistic traits and she said pick 2 or 3 to work on I dont think they'll keep me involved for 7 years like you said it will me maybe 6 sessions and I think it will be the treatable things like anxiety or depression, Ive since found out they've joined a new CCG which is now called an integrated care partnership so theyre part of NE & Cumbria ICP its soooo confusing but basically its suppose to be joined up thinking and using the resources of the whole area to solve the problem

Autism isn't something to be 'worked on' or treated. I assume they mean the types of mental health issues that commonly occur in autistic people, such as anxiety. I'm curious if you have managed to access some sort of support that I didn't know existed. Are they really planning to keep you engaged in the service for as long as you are on their waiting list?

Most of us fail to get any support at all from mental health services. There are extremely long waiting lists for even very basic CBT courses, which do not help anyway. Any treatment offered is usually for a maximum of 6 weeks and then you'll need another referral. Repeated referrals from my GP have been declined by the MH services and/or the CCG. I've now given up asking, as I can't face any more rejections and don't trust them not to make my anxiety worse.

Unless you are lucky enough to be able to access any specialist support in your area then you will likely find that most MH staff have very little training on or knowledge of autism. Their interventions and approaches can be at best unhelpful and at worst harmful to autistic people. Be careful to understand what it is they are planning to do for you, especially as you have seen the evidence of how bad your local service are.

With regards to the process of using the 'right to choose' system, it may help if you start a separate discussion about it on here. It's more likely to be seen by someone who has experience of that.

I haven't been on here that long myself, but it's amazing how many times I've read something and thought that is so like me I could have written that.

Autism is sometimes referred to jokingly as wrong planet syndrome. I think that is so true. I've felt like an outsider my whole life and now I've finally found more of my own species on here.

I found out by accident too. I happened to come across a book on Aspergers (as it was called then) and reading was like myself being described on the pages. It is good that there is more awareness now, with people in the public eye talking about their own experiences of being autistic.

Like you I had a mental breakdown due to work in my early 30s. Looking back I now realise it was a period of severe autistic burnout. I've not really worked since either, aside from a few disastrous temporary jobs. The statistics for numbers of autistic people in employment are shocking.

Autonomistic said:

The process of going over past negative events, which had been well buried since childhood, was incredibly difficult. My initial relief at my diagnosis had been replaced by negative emotions, mainly anger, which I wasn't expecting. I was angry that autism had been repeatedly missed, despite so many clear signs and my severe lifelong anxiety. There was also a sense of loss at how differently things could have been if I had known earlier in my life and had support. 

I am still trying to learn how to live as a successful autistic person, rather than a failing non autistic one.

Wow you've put into words exactly how I have been feeling these last 2 months since I discovered I was autistic.

I only found out by accident!!!, I was trying to remember the name of the lady who did the Boddington adverts years ago, turns out its Melanie Sykes also on the google return was a few news stories one being that at 51 (My age) MS found out she was autistic, hmm thats a strange I thought so I read the story which in turn made me end up at the NHS symptoms page I have all the main symptoms and also all the other symptoms. At that point you could of knocked me down with a feather like probably many people my only dealings with autism where things like the rainman and the undateables etc never for 1 minute did I think I was autistic. Next I go onto loads and loads of online tests and every test said high autism make an appointment to see your GP.

I beaten myself up since I was a teenager about my issues but everything makes sense now but if only I had been diagnosed earlier things could of been different instead of me eventually having a mental breakdown at work 18 years ago, since then I've not really worked and the couple that I have had have ended quickly due to what I now know is my autism, your last line I love and will now be my new mantra

I don't think they are as the clinician I saw wants me to pick 2 or 3 aspects of my autism to work on in the meantime and to keep me engaged in the service. TEWV are really bad, you just have to dig a bit they make the news quite regularly IIRC Panorama did an episode undercover at one of their residential wards and there where staff hitting patients etc they also didnt do great with the cqc

https://www.cqc.org.uk/news/releases/cqc-tells-tees-esk-wear-valleys-nhs-foundation-trust-make-urgent-improvements

you would think if would be easier to find out the waiting times or trusts, nice idea about returning to my GP thanks for that

7 years is crazy and makes me think they are just fobbing you off  Don't give up.

I've had a look on the TEWV website and the information on there about diagnosis is extremely vague https://www.tewv.nhs.uk/about/performance/autism-framework/ The link they provide about the diagnostic assessment just goes to a page about children and young people, nothing about adults.

It seems that it is somewhat of a postcode lottery but I would question your GP again about what the process is in your specific area. I think you should be able to use the 'right to choose' procedure to be referred to an alternative diagnostic centre with shorter waiting times. However I have no personal experience of doing so.

Wow all thats so quick I went to GP got the referral straight away an appointment within around 6 weeks with an access clinician who then took her findings to their MDT meeting and it was decided to put me forward to their affective disorder team for autism assessment, now here's the killer she said the waiting times are around 7 years!!!(Tees, Esk and Wear Valley Trust), like many people I've always known I was different but at 51 and only recently finding out I'm autistic I'm currently reflecting on my life and being autistic it makes sense now.

Does anyone know if there's a way to find out diagnosis waiting time in different areas and do I have the right to transfer to other trusts

Hi Lisa.

I didn't catch the names of who was on the session as I was kind of working whilst listening to it, so didn't look at the screen that much.

I have found it hard getting into work, but I managed to get into the company I am at now and have been here for 15 years. I would have no idea where to start with getting a new job now and I am almost certain I wouldn't get past an interview because of how difficult I would find it being on the spot and being questioned.

I am keen to get my report because is signifies the end of the diagnosis process for me and I want to be able to read through it and put it away. I find it tiring waiting for things like this because I can't relax until the conclusion.

I hope Luke gets something out of the sessions as well and has some luck on the job front.

Dino

Thanks Snookums

I'm already diagnosed -- was an early one for me, though did seem to take a long time the GP didn't want to do it according to my mum. But it's great that you're going through your journey and I think doing this post will help so many people especially those who are waiting. My assessment was similar, lots of questions, a few tests one was to do with hearing and they asked a lot about how I was as a little girl. It's interesting how different it is across the country.

I hope the workshop sessions will go well and be positive for you as in when you want to do them 

Hey Autonomistic.

Sorry it has taken so long to reply; I was a bit busy yesterday afternoon/evening.

It amazes me the difference in support and speed of the diagnoses across the UK. I sort of imagined that all areas would work from the same template of support offered etc, but that apparently isn' t he case. I do consider myself fortunate in my timeline and the support made available, and wish everyone had the same (or better).

I have never felt angry about it being missed in me, because when I was younger it wasn't really known about so much and then after that I was 'just being me' and I had a rather smal social group, so nobody much noticed any unusual behaviour or traits. I have always had anxiety as well, but I honestly thought it was just what everyone had, so I tried to get on with it along with masking my autistic behaviours.

You have made it this far, so you're a success in my eyes.

Dino

It is interesting to see how the process works in other areas. The difference which particularly struck me is the amount of post diagnosis support you are offered in your area. It is much more generous than the 2 support sessions I was offered.

From my GP finally agreeing to make the referral (which in itself took 3 years but that's another story) it took just under 2 years for me to reach the top of the list. The assessment process took around 6 months. The written report took a further 4 months. The post diagnostic support sessions took place around 18 months after my diagnosis.

Like you I had long periods of silence in between contacts and appointments. I found this particularly hard to cope with, as I like to know what is happening and what is going to happen.

I would have benefited from a lot more post diagnostic support and much earlier in the process. I think the delays were partly due to Covid and also that there was a further waiting list for the post diagnostic support. During this time I was really struggling, without any support at all. I think the amount of post diagnostic support offered in your area should be the bare minimum in all areas. Like so many things it seems to be a postcode lottery.

The process of going over past negative events, which had been well buried since childhood, was incredibly difficult. My initial relief at my diagnosis had been replaced by negative emotions, mainly anger, which I wasn't expecting. I was angry that autism had been repeatedly missed, despite so many clear signs and my severe lifelong anxiety. There was also a sense of loss at how differently things could have been if I had known earlier in my life and had support. 

I am still trying to learn how to live as a successful autistic person, rather than a failing non autistic one.

How weird! …his name is Luke Bruckshaw…he unfortunately isn’t working at the moment as his apprenticeship recently came to an end and so he is struggling with that too. Hope the workshop is of some help to you both

Luke recently received his report, it came a couple of weeks after his diagnosis, it’s basically a write up of what was said/done in the assessments so hopefully yours should arrive soon! 

Lisa

Hi Lisa.

My session is tomorrow as well, at 10am, so I bet we're in the same one. I am just going to observe and listen in as I will be working at the time (sneaky headphones on).

I thought it would have been useful to have my report prior to the session but it hasn't arrived yet. My diagnosis was reported to me on Thursday 18th August.

Dino

Hi Dino, my 22 year old son has recently been diagnosed and we also  live in the Greater Manchester area (Wigan) 
He has his first online workshop session tomorrow and is anxious about it. I have told him to come on here and speak to people, but he is very reluctant to do so  Have you had your first session at all please? 

Kind regards 

Lisa