Should I continue with the formal autistic identification process?

Hi, I wanted a formal diagnosis in the hope of having a more 'formal' confirmation that I really was autistic- I was initially struggling a lot with impostor syndrome and questioning everything (as usual)... though I guess I can also question the diagnostic process (and I did too initially - eg. Are they wrong? Am I unintentionally telling them what they want to hear etc etc?). I think with time reflecting and especially through connecting to other autistic people I am becoming more and more confident in my autistic identity. So by the time I got the formal diagnosis I was already much more used to it. However I did really struggle with feeling labelled as "disordered" and "broken" after receiving it. I'm still glad I had the diagnosis as it did give me that external validation that I needed. Especially the first part of my diagnosis was very positive though- I was diagnosed through Sara Heath and then an NHS consultant psychiatrist. Initially I was abroad and I just wanted to have a pre-diagnostic assessment by Sara to see whether I could be autistic - It was very good talking to her as I felt very understood- I was very surprised though when told that it was very obvious that I was autistic. Only later did I realise that if I moved back to the UK I could be formally be diagnosed with the help of Sara's report. When I moved back to the UK I then had a session with the consultant psychiatrist who did his assessment (basing it on the report) and then decided that I should get the diagnosis. The consultant was very nice too but getting and reading the formal assessment letter did make me feel very labelled and dysfunctional.

I also wanted a diagnosis as I thought it would be useful to have in case I ever ran into issues at work or university or needed accommodations. 

Finally I really hoped that I would be able to access more support and particularly support that is more tailored to autistic people in terms of my mental health- I have a lot of issues around food/eating (which I now realise are related to being autistic too) and with stress, anxiety, need for routine etc. and I thought that if I had a diagnosis I could get better help. Sadly this is not true at all and I felt very let down realising that there is no support at all available for autistic adults in my area...  I hadn't expected huge support but I thought at least there would be something or it would change how some of my issues are being dealt with but so far there has been nothing... 

I am very glad that I know that I am autistic (regardless of formal diagnosis or not)- it was huge for me to realise this, it's helping me so so much and  I feel much less alone and I met this wonderful community. I think for me a formal diagnosis was right, as external validation and in case I run into issues at work/uni. But other than that, for me at least, getting a formal diagnosis did not open up more options for support... 

As I realised that I am autistic I realised that my mum is almost certainly also autistic- For her a diagnosis is of no interest though- Her take on it is ' well, I've always known that I am different', now she knows the 'name' of that difference but to her that doesn't change anything as she has accepted herself the way she is a long long time ago and is self-employed now so no need for it for work related issues. 

Hi, I wanted a formal diagnosis in the hope of having a more 'formal' confirmation that I really was autistic- I was initially struggling a lot with impostor syndrome and questioning everything (as usual)... though I guess I can also question the diagnostic process (and I did too initially - eg. Are they wrong? Am I unintentionally telling them what they want to hear etc etc?). I think with time reflecting and especially through connecting to other autistic people I am becoming more and more confident in my autistic identity. So by the time I got the formal diagnosis I was already much more used to it. However I did really struggle with feeling labelled as "disordered" and "broken" after receiving it. I'm still glad I had the diagnosis as it did give me that external validation that I needed. Especially the first part of my diagnosis was very positive though- I was diagnosed through Sara Heath and then an NHS consultant psychiatrist. Initially I was abroad and I just wanted to have a pre-diagnostic assessment by Sara to see whether I could be autistic - It was very good talking to her as I felt very understood- I was very surprised though when told that it was very obvious that I was autistic. Only later did I realise that if I moved back to the UK I could be formally be diagnosed with the help of Sara's report. When I moved back to the UK I then had a session with the consultant psychiatrist who did his assessment (basing it on the report) and then decided that I should get the diagnosis. The consultant was very nice too but getting and reading the formal assessment letter did make me feel very labelled and dysfunctional.

I also wanted a diagnosis as I thought it would be useful to have in case I ever ran into issues at work or university or needed accommodations. 

Finally I really hoped that I would be able to access more support and particularly support that is more tailored to autistic people in terms of my mental health- I have a lot of issues around food/eating (which I now realise are related to being autistic too) and with stress, anxiety, need for routine etc. and I thought that if I had a diagnosis I could get better help. Sadly this is not true at all and I felt very let down realising that there is no support at all available for autistic adults in my area...  I hadn't expected huge support but I thought at least there would be something or it would change how some of my issues are being dealt with but so far there has been nothing... 

I am very glad that I know that I am autistic (regardless of formal diagnosis or not)- it was huge for me to realise this, it's helping me so so much and  I feel much less alone and I met this wonderful community. I think for me a formal diagnosis was right, as external validation and in case I run into issues at work/uni. But other than that, for me at least, getting a formal diagnosis did not open up more options for support... 

As I realised that I am autistic I realised that my mum is almost certainly also autistic- For her a diagnosis is of no interest though- Her take on it is ' well, I've always known that I am different', now she knows the 'name' of that difference but to her that doesn't change anything as she has accepted herself the way she is a long long time ago and is self-employed now so no need for it for work related issues. 

Thanks for taking the time to write such a detailed reply. It is very helpful.

Ann :) said:

Hi, I wanted a formal diagnosis in the hope of having a more 'formal' confirmation that I really was autistic- I was initially struggling a lot with impostor syndrome and questioning everything (as usual).

Yes I understand what you mean, a formal identification can give you a level of certainty and validation that you may not get if you self identify.

Ann :) said:

Am I unintentionally telling them what they want to hear etc etc?). I think with time reflecting and especially through connecting to other autistic people I am becoming more and more confident in my autistic identity.

I am glad to hear that you are more confident in your autistic identity, this is one of the many reasons why connection with our neurokin is so important and powerful.

I understand what you mean about telling people what they want to hear. When I was initially considering formal autistic identification, my family said to me that I had researched autistic experience so much that I almost knew too much about my being autistic. But only an autistic person would deep dive into research about our autistic experience.

Ann :) said:

However I did really struggle with feeling labelled as "disordered" and "broken" after receiving it.

I completely understand what you mean, this is exactly what I am worried about. We are not ‘disordered’, we are perfectly autistic. The basis of diagnosis is the pathology paradigm. I am sorry you struggled with those feelings, the journey to discovery our autistic identity is very flawed when it should be a positive affirmation of our autistic neurology.

It’s good to know that you are becoming more confident in your autistic identity now though, thanks to our community.

Ann :) said:

Finally I really hoped that I would be able to access more support and particularly support that is more tailored to autistic people in terms of my mental health- I have a lot of issues around food/eating (which I now realise are related to being autistic too) and with stress, anxiety, need for routine etc. and I thought that if I had a diagnosis I could get better help. Sadly this is not true at all and I felt very let down realising that there is no support at all available for autistic adults in my area...  I hadn't expected huge support but I thought at least there would be something or it would change how some of my issues are being dealt with but so far there has been nothing... 

Unfortunately, formal support for autistic adults is almost non existent. The majority of support for our community comes from sharing lived experiences usually online.

In terms of support for your mental health, it might be useful to work with an autistic therapist who will hopefully be able to understand all your needs intuitively from an autistic perspective. If so this website might be useful:

https://neurodivergenttherapists.com/

Ann :) said:

it was huge for me to realise this, it's helping me so so much and  I feel much less alone and I met this wonderful community.

A strong and positive autistic identity is so important for belonging and allowing us access to our own tribe.

Thanks again for your in depth reply, I think I have written a mini essay back!