Wish I’d known

Hi NAS7112

I read your post and I'm not sure how to respond, but I wanted you to know there are people here who are able to listen and although may not have all the answers (there is an amazing amount of wisdom here that's come from so many people with lived experience)  would be able just to acknowledge how you're feeling and where you are. 

You're not alone. 

On the diagnosis. I can understand why you feel that it may not make much of a difference - and my experience was the assessment was very disorientating. I've only had 3 sessions post-diagnosis with the psychologist but the insight it's given me has been invaluable. Just having that acknowledgement that my experience of the world is different to other people gave me permission to drop all the false fronts and persona's I'd adopted over the years just to survive. Although the things that stress me are still there and the world is still a very confusing place - for the first time i actually feel "me".

 I really wish I could say or advise something to help you through what you're feeling. The world we live in, and the people we trust to help us and support aren't as skilled or knowledgeable as we'd like them to be. I think people generally do care but they simply don't understand and don't know how to help. They're only talking from their perspective and their own experience - it's advice they might have heard and they think works for them and so they think it works for everybody.

Because our experience is so different - and I'm still learning as to just how different it is - those things that have been said to you are  just really, really unhelpful and hurtful. Possibly said with the right intention but out of a lack of understanding of how you see the world. Neurotypicals (or anyone really) all struggle to see the others viewpoints - it's one of the reasons why the world is such a messy, chaotic place. But if the basic way you experience the world is different, it means it's much harder for someone who experiences the world in a "normal" way to understand your experience and suggest the things which will help you. 

My diagnosis helped me to tap into the right advice and the right support. It's made a huge difference - I'm in my forties now and I was in a very different place 6 months ago - on the verge of just giving up with everything. I'd like to say I got myself out of it. I didn't. It was my manager, who I now consider a very close friend, who suggested I go for an assessment. She had no special insight. I've learned it was a night of gin and conversation with a friend who just happened to be a psychologist. 

I really hope you're able to find the help to make this easier. 

Wishing you the best.

Hi Ethan

thank you for your reply. I agree that a diagnosis would be the best thing for me but I got a partial assessment with the NHS but the psychiatrist said he couldn't actually diagnose me because there was no history from my younger years.  I don't understand why but that's what he said. 

Any suggestions would be good. 

Thank you. 

The younger years - It's to build up a picture of how well you adjusted to growing up, so the psychiatrist would have been looking for how you interacted socially, your communication and language skills, any special interests or repetitive behaviours.  

I'm not sure where the psychiatrist is coming from. There's no-one who I could contact who could provide me information about my childhood so my team relied on self-report. Basically I answered the childhood questions as best I could and dumped a load of info on them which I thought was relevant and let them figure it out. That, my questionnaire, face to face assessment, informants report, and history of general psychological distress was enough to get me a diagnosis.

There is some advice on the NAS website https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/pre-diagnosis/adults Unfortunately I don't feel I'm able to give good advice about how to get an assessment. Due to the length of the NHS waiting list in my area, my employer agreed to fund my assessment with a not-for-profit service to keep me functional and in-work - and also because my companies contract with the provider for occupational health didn't cover it. I was lucky. 

I don't want to suggest going private if that's not an option for you so other than the NHS I can only suggest linking up with some autism charities in your area. They may not be able to offer a professional diagnostic (or only be able to offer one if you pay, which might not be an option) but if they recognise some of the difficulties you're having as being on the spectrum they might be able to offer some general advice and strategies to help you cope. I'm surprised at how many strategies would work for everyone - including non-autistic, I find I just need them a lot more.  

Even having a self-diagnosis from one of the online tests may help to open the conversation. They cannot replace a professional diagnosis but, like I say, it might open up the conversation with someone who can help.

I'm sorry that I can't suggest more, or there isn't a clearer path ahead, but I wish you the very best. 

The younger years - It's to build up a picture of how well you adjusted to growing up, so the psychiatrist would have been looking for how you interacted socially, your communication and language skills, any special interests or repetitive behaviours.  

I'm not sure where the psychiatrist is coming from. There's no-one who I could contact who could provide me information about my childhood so my team relied on self-report. Basically I answered the childhood questions as best I could and dumped a load of info on them which I thought was relevant and let them figure it out. That, my questionnaire, face to face assessment, informants report, and history of general psychological distress was enough to get me a diagnosis.

There is some advice on the NAS website https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/pre-diagnosis/adults Unfortunately I don't feel I'm able to give good advice about how to get an assessment. Due to the length of the NHS waiting list in my area, my employer agreed to fund my assessment with a not-for-profit service to keep me functional and in-work - and also because my companies contract with the provider for occupational health didn't cover it. I was lucky. 

I don't want to suggest going private if that's not an option for you so other than the NHS I can only suggest linking up with some autism charities in your area. They may not be able to offer a professional diagnostic (or only be able to offer one if you pay, which might not be an option) but if they recognise some of the difficulties you're having as being on the spectrum they might be able to offer some general advice and strategies to help you cope. I'm surprised at how many strategies would work for everyone - including non-autistic, I find I just need them a lot more.  

Even having a self-diagnosis from one of the online tests may help to open the conversation. They cannot replace a professional diagnosis but, like I say, it might open up the conversation with someone who can help.

I'm sorry that I can't suggest more, or there isn't a clearer path ahead, but I wish you the very best.