Diagnosis and Support

Sounds almost identical to my report (I went with NHS - Right To Choose as well). It's been a few months since I checked it, I had hoped that the referral would be done automatically by my GP but it seems to have never happened. Didn't mind at first, it was nice to have time to just live, get to know myself again and not be pre-occupied/worrying. But I'm conscious now that I'm getting older and may need additional support. I have looked into adult support services but they seem to be non-existent in my area. To have some aims and guidance set with professional help would be really useful!

Sorry, just to add: if you haven't yet seen them, I also suggest having a look at the resources in NAS's diagnosis hub.

The After diagnosis section includes, for example, Formal support following an autism diagnosis

Hi Peter

I was also diagnosed last year by Psychiatry UK. My take on their role is that, as a private provider of diagnostic services, their role is limited to assessing and reporting on whether or not we are autistic (unless we then choose to also pay them for more).

You don't mention which route you took in using them. I used them through the NHS via Right to Choose, but I believe / assume the same would apply if accessing their services privately.

It seems to me that, having made that diagnosis (or not), they then effectively "pass the baton" back to the NHS and local services to identify and provide the most appropriate types of support (which includes taking our personal targets / goals into account).

For example, in my case, their report included the following support-related recommendations for my GP to action:

• Referral for therapy (with a therapist experienced in ASD)
• Referral for occupational therapy assessment and management (with a therapist experienced in ASD)
• Referral for a psychosocial needs assessment, followed by interventions performed by an ASD-experienced assessor
• Due to mental health-related issues, suggestions for further medications to try

There were also further recommendations for me personally, including participating on a forum like this one - which I am definitely finding helpful :)

It might be worth checking your report (across the first two pages in mine) to see whether there are similar referral / GP recommendations that you can follow up on with yours.

I think the 'picking apart' stuff is what happens in therapy, of whatever type. This could be provided by your local NHS or it might be (unfortunately) a private service. The way I looked at it, was, the assessment was literally just to go, yes you are autistic. And you then go on and get separate help for whatever challenges you have. In the same way that your GP might say 'You have high blood pressure. Here's some info.'. They might refer you on to other services, but they wouldn't do the stuff themselves, if that makes sense.

So I think I have been doing this since I first realised I might be autistic and luckily my work have been really supportive in putting in place reasonable adjustments. I'm now in a different role since the diagnosis which has also provided some additional benefits. The main thing I'm thinking of now is that some errors I could in theory make can be quite serious and I'd feel better knowing HR had a document clearly outlining my deficits and potential problem areas. Put it another way, the reasonable adjustments I have got is entirely from my own proactivity as they can't offer anything unless it's explicitly stated as a need.

The example you gave here is also one I've had trouble with and my former manager was great with, but now my new role requires a lot of self-directed work so I don't have the same type of communication needs or demands made on me, but it's made me realise just how forgetful and bad at organising I am!

I think there were a few comments like that but they were embedded or not highlighted in a way that made it obvious what my strengths and weaknesses are. I agree on finding it interesting, I was almost hoping to get picked apart a lot more as part of the process to help me going forward. Instead, still having to do trial and error on a lot of things and circumstances.

That is quite different! Mine had the stuff I had said but also observations from the assessor about my speech, demeanor and behaviour. It was a little unnerving to be under scrutiny like that, but on an intellectual level I found it interesting.

This is what I had expected from the report that was produced for me but it felt like I was reading back everything I had said to them. It did leave me wondering if I had been properly assessed but this seems to be the standard with Psychiatry UK.

More specifically relating to your situation, would it help if you worked backwards, so to speak, to find out what your needs are and what would make your work life easier. For example, think of the last time you had a bad experience at work. Why was that? What caused it? Was it something that could take a small change to fix? As an example, I was struggling with people coming up to me and asking me to do stuff while I was working. I'd already planned all my work in my head to the last minute, so having to fit in new stuff would derail me and make me even more stressed. Now I make sure to check in with people beforehand and outline exactly what I will be doing, and ask then if there is anything extra they want done. If there is, I explain that something else will have to be missed out.

The uncertainty was what was stressful for me. My need was for a clear plan agreed in advance. The change was for me to communicate this directly.

Obviously this is reliant on me being proactive, and sometimes it is other people who need to change their behaviour, but this was the personal example I had.

It's wild how different the levels of detail are depending on where you go. I was diagnosed through the NHS and I felt it was very thorough and comprehensive, using specific examples of how I struggled in the past and currently. In the final interview before diagnosing me, the clinician talked me through everything she had put in her report, checking that I was happy that everything was accurate and asking if I had anything else that I wanted recorded. She even had a section on my autistic strengths and made sure that I knew I had places to look for support if needed. This is what it should be like for everyone. Not dependent on location or privilege.

Peter said:

I've tried looking around for adult support services in my area but can't find anything

There are few support services for level 1 autists as we are largely considered capable of sorting out our own care.

It may be worth seeing if NAS has any services in your area however - you can search here: https://www.autism.org.uk/advice-and-guidance/topics/social-care

Most of us end up either without support or going privately and using a therapist. There is a good source of therapists across the UK here: https://www.psychologytoday.com/gb/counselling

Best to perform the search and add a filter (the blue button) to tick the box for autism to make sure the therapist has experience in this area.

Most of those I know also do their therapy by video session as the travelling can be an issue - most therapists do this and it means you can carry on even when travelling for work / holiday etc.

I spend £50 per hour for my therapist and prices are around this number for most - they are normally listed on the PsychologyToday link for reference and you can typically get a trial session to see if you gel with the therapist.