Should I continue with the formal autistic identification process?

Thanks for your reply, it is very helpful. I am glad you had a positive experience, this isn’t the case for many of us. I understand what you mean about a formal diagnosis serving as proof of your needs and challenges.

Unknown said:

I've struggled with my mental health and now I know why

I completely understand this point, formal identification gives you a lens with which to examine your mental health difficulties.  Typically we develop mental health difficulties because our environment is not suited to our autistic neurology. Knowledge is power.

Unknown said:

I have a fairly strong sense of self in some respects and although it made slightly uncomfortable reading, it was mostly pointing out things I knew about myself anyway. If you can park that to one side I'd say it's worth going.

You know much more about your autistic experience than a piece of paper will ever be able to tell you.

 I decided to go for formal identification in the first place, I am just worried that it will be an unnecessarily negative experience.

Thanks for taking time to write your lengthy reply.

If I’m understanding the question right you’re asking would you ever need to put forward autism as a defence or excuse? If you’re high functioning like me and not prone to violent outbursts?

absolutely. We live in a cancel culture. I’ve been kicked out of things and told ‘it’s not that your opinions were unreasonable just that the times at and ways in which you expressed them were insensitive.’ I was told my presence resulted in an ‘unsafe’ environment because I made people ‘uncomfortable.’

I'm sorry if you feel otherwise but I know very few autistic people who can avoid making others uncomfortable from time to time with out becoming very socially withdrawn themselves.

so yes I think in this day and age where causing offence is treated like a crime and people feeling uncomfortable is treated as a ‘safety’ issue there is a real need  for autistic people to be able to use autism as a defence.

you see the ultimate recourse in a situation like that is legal action and in a court or tribunal a diagnosis on paper can make a big difference.

Thanks for your reply. I know many of us seek formal identification for validation.

sphynx said:

But in fact, I felt unable to be myself in the assessment, and barely  recognised myself in the report.X'sdeepened a lot of imposter syndrome for me.

That’s so sad that the report didn’t reflect you, but it’s almost to be expected because the diagnostic criteria is based on an autistic person in distress not our actual autistic experience. Formal identification of your autistic experience should be a positive affirming experience and give you clarity, not make you doubt your autistic experience even more .

I am worried that I won’t be able to recognise myself at the end of the assessment as well because it is usually so negative.

 I am glad formal identification has given you confidence to advocate for your autistic needs.

Thanks your response has helped me a lot.

I also waited more than two years, not to mention the several years it took to book the first doctor appointment.  Got my diagnosis about a month ago.  It's been a huge journey.

Some of things it means to me:

1) It gives me more authority to act as an autistic advocate.  It may not matter among out community, but it gives me more leverage at work to say "this child needs this kind of support because I recognise this behaviour and it means this..."

2) I can be included in acadenic research projects that will benefit other autistic people who come after me.  I've already volunteered for one such project and am considering a second.

3) I can have something in my medical records.  Usually I manage life fairly well at my own pace, but there are a couple of times when I've been in hospital and become overwhelmed and non-verbal or slow to process information.  As I get older and may find myself in that position more often, I hope that having my needs in my medical notes may help facilitate things.

4) It was tough jumping through the hoops to get there, but now I can say to other autistic people going through the same thing that I've been there and it was worth it.  Partly for my own peace of mind and partly so that others will take my claims more seriously. There's a kind of kinship in having lived through those experiences and attitudes.

5) I am not a huge fan of my diagnostic report, but I have made the choice that I will not let it define me.  These are someone else's observations which give me a helpful understanding of what ithers might see in me, but they are not who I am.  I am still in charge of my own identity.

6) It's given me the confidence to ask for a few minor accommodations at work.  It's not much- the big one was being allowed to text instead of phone in when I'm ill, but I'm also trying to campaign to get the dress code altered.  I have pink hair which I have to keep covered to conform with their sense of "normalcy" but I am arguing that this is discrimination as my hair colour is a support strategy that I use to deal with being autistic.

So in summary, it's about more than just me, it's about how having that label enables me to achieve more for my community.  Hopefully. ;)

We all have different experiences. For me as someone who isnt obviously autistic (whatever that means anyway) formal diagnosis is a kind of "back up" or proof if you will, that yes I do struggle. Also I wanted to know if it was all in my head or my suspicions were real. I've struggled with my mental health and now I know why. A diagnosis means I can advocate for myself instead of masking my way through. 

It depends who or where you go for assessment. I had a fairly positive experience. I think the assessors I had had a good understanding of the nuances although they do have to work within a framework of deficits.  So my report was somewhat about these "deficits"  but they tried to keep it positive (ie not a broken neurotypical but a neurodivergent person trying to get by). I have a fairly strong sense of self in some respects and although it made slightly uncomfortable reading, it was mostly pointing out things I knew about myself anyway. If you can park that to one side I'd say it's worth going.

Assessment, diagnosis and report has opened up factors I hadn't considered much before such as executive function difficulties, but these are actually things I really struggle with. Someone on here recently said it's like you are given a manual for your life and you open it up and its blank. i understand this. It takes time to integrate a diagnosis. Talking therapies with people who "get it" have helped massively. More so than a diagnosis in fact.

It depends why you put yoursrlf forward for an assessment in the first place. Assuming it was you who decided. You've got this far waiting. What have you got to lose? 

In reality, and especially considering the current vogue of querying the concept of an autistic soul who "is basically a bit weird but functionally OK(ish)"....would that piece of paper ever need to be whipped out for defence?

I do accept the principle of what you have said and agree that, notionally, a formal dx could be useful in this regard.

I am VERY invested in this discussion.  I feel exactly how awesomely autistic has described himself in the OP, but have not started any formal processes as yet.

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!

Thanks for your reply.

Peter said:

autism identification makes me think of a badge like a policeman. Like I’m going to walk in and whip out a card saying, ‘detective peter, autism Patrol.’

Funny.

 I understand what you mean about a formal diagnosis being an  explanation for other people to understand your autistic needs.

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. 

My diagnosis stopped the constant ‘am I’ questions, and the persistent doubts, even though I already ‘knew’ I was autistic. It was good to hear from a professional that he agreed with me, and all the factual reasons why. It felt good to have the ‘evidence’ in front of me. I live by facts and detail, so I needed this ‘feeling’ to be factually correct. I got some good insights from him. I also found out some random information about my self and my processing skills.

I can request adjustments at work when I feel like I need them. I think this will be useful if and when I quit my current job, and move on to something else.

Your reply is not unhelpful or rubbish, it is so thoughtful and kind! Thanks so much!

Queen said:

What will make you happy. 

A very simple but powerful response.

I definitely agree that I don’t need answers, I am certain of my autistic identity.

Queen said:

But it sounds like you've found that yourself already. I wish I had been able to do that.

I am sorry you were not able to find answers about your autistic identity earlier, hopefully being involved in this autistic community has given you much needed answers and knowledge about your own autistic experience. We can learn so much from sharing our lived autistic experience with each other.

Thanks for your reply.

Hi, 

Sorry you've faced the abyss of the waiting lists, but it sounds like this has led to some important space for reflection.

It's so good to hear you have a strong autistic identity. For me this was the main thing I was seeking from the formal ID process - or not a sense of identity as such, but validation: a sense that I had a right to that identity. But in fact, I felt unable to be myself in the assessment, and barely  recognised myself in the report.X'sdeepened a lot of imposter syndrome for me.

Having said that, it does make me more confident to disclose and ask for access arrangements. 

Hope that helps a little. Good luck with the decision :)  

A) autism identification makes me think of a badge like a policeman. Like I’m going to walk in and whip out a card saying, ‘detective peter, autism Patrol.’

B) that said on paper I have an excuse, a justification, if anyone ever decides to try an stigmatise or vilify my weird behaviour as ‘anti social’ or ‘grossly insensitive.’ I have this label to pull out as a shield. Something to say ‘you can’t use my being different against me because my being different is a medical condition.’

beyond that I’m not sure it’s helping me much

You need to do what is right for you.

What will make you happy. 

A diagnosis doesn't help everyone.

It gives some people answers, that long sought after belonging.

But it sounds like you've found that yourself already. I wish I had been able to do that.

This isn't wise so sorry ifmy reply was unhelpful and rubbish.