Post Diagnosis Support?

You have such a wonderful way with words, you know? Thank you so so much, your words are really comforting and helped to settle my mind a little  

It all DEFINITELY makes sense. I think you’re having an entirely healthy response to getting the diagnosis - and I think many of us have felt the same (what you write here feels extremely familiar to me that’s for sure). You’re basically in the very early stages of processing what this experience of assessment and diagnosis means for you - and you’re asking all the appropriate questions about what  it could potentially unearth for you about your past experiences, and indicate about how to best move forward with your life. It’s a big thing to work through and you’re asking yourself all the right questions to try to work this out. 
A diagnosis is bound to make us re-evaluate so much about our lives - it’s a bit like looking at everything with new eyes. It shines a light on things. But it takes time - it might take months for you to work through it all - and even then the process continues in small ways. Allow yourself time - lots of time - to let your mind find stability around all these complex emotions and memories. There’s no rush. 
It struck a chord with me when you described yourself as ‘(overly) emotional’ - that indicates a value judgement on what is essentially just your normal human response to things as an autistic person. You’re not ‘overly’ anything, you’re just you, and I think a diagnosis (in time) can help us to embrace who we really are, and accept ourselves. Often when we look back someone (a parent, a teacher, a sibling) has told us that we are “over sensitive”, or “being silly” etc - and they’ve made us feel bad about who we are. And often with a late diagnosis we have to begin to work on undoing the effects of lot of toxic messaging that we’ve absorbed from others about ourselves over the years. But it’s worth it. In time we can learn to really embrace who we are, and stop the internal dialogue we have about how useless we are, and how we’ve failed at this, or that. What’s wonderful is that you’re starting this process now. It’s a bit like a jigsaw with lots of pieces that don’t really fit - and getting the diagnosis is like throwing all the pieces up in the air - it’s a bit alarming and you worry that you might lose some of the pieces - and you might not even know what the picture is anymore. But then - over time because of all the extra information and awareness that you now have - all the pieces start to fit back into place in the RIGHT places - where they were always meant to be - and there you are :) 

Mine were lovely too,

I could definitely give it a try, it wouldn't hurt! It just wasn't what I expected at all, and the lady was so lovely and patient with me as well.. I really thought I'd have gotten a bit more from it.

I do take comfort in that though, everybody I have spoken to here have all been so wonderful and supportive!

Ah okay. 

I don't think they'd be the answer to everything but maybe you'd understand yourself more.

I wish I had a better suggestion! Because I'm not aware of any in-person groups unfortunately. 

Oh dear! That sounds a bit unfair. Mine is a 29 page report! There are all sorts of observations and a very in depth breakdown of the ADOS-2 test too.

This is a real long shot, and I do not have high hopes of it working, but is it worth getting in touch with them saying that other autistics that you know got detailed long-form reports and that you are concerned that you didn't get something similar.

Having said all that, I do not know how useful mine will actually be.

All I can really say is that you are not alone, and maybe you can take a little comfort from that.

I'd like to see a therapist, but I don't technically have low income, but bills and everything combined still leaves me short at the end of the month and I wouldn't be able to afford therapy on top of everything else unfortunately. 

But I also worry that a therapist is not the answer and I'd be wasting their time because I just feel lost and confused, I wouldn't know where to start. But I get through life fairly okay I just want to understand myself more and me more in touch with myself.

I see a person-centred therapist who is also autistic.

Because of my low income it's only £20 a session. 

Hi Spikey, I'm sorry you have had similar experiences. I keep thinking about seeing a therapist but I can't afford the fees. Regards to the report though I thought mine was quite uninformative - it just stated the test that she did and that I passed it. There was no description of any traits that she saw or anything personal to me other than congrats you passed that one. But during the meeting she wrote lots of things down, and she asked so many questions but nothing was described in the report and that was what I was counting on, I wanted to see all of her thoughts and findings laid out on paper for me to read.

Hello BumbleBee

I have just seen this.

I only got my final diagnosis and report last week.

My initial feelings were being very happy.

Like you, it was then strange seeing myself laid bare in the report. Things that I'd never even noticed myself.

Then I was positive about the meeting at the time, but then ruminated on it all night and was very unhappy in the morning. I was subconsciously expecting it to be all positive - a bit like happy tales on TV when someone comes out as gay (I know this probably has downsides too in real life, but I mean the fantasy portrayal.) But the meeting, in retrospect felt more and more about ways of helping me get back in the neurotypical box rather than embracing my autistic identity!

I think that I am going to get some therapy about this. You have to be careful and like others have alluded here, you do not someone who uses neurotypical techniques that may not work as well for us.

Steph Jones "The Autistic Survival Guide to Therapy" is a good guide and should help me do a better job of finding a good therapist. (Steph is a therapist and is Autistic and has experienced all of the bad experiences about therapy in a neurotypical world and so this book can help us avoid some of the same pitfalls)

Good luck!

Thank you so much for your response! I wanted the diagnosis because I wanted a reason, not an excuse, or something to tell people - just a reason, for my own peace of mind. I thought it would help me to understand myself more, I thought it would give me access to someone to speak to, I had so many things written down that I struggle with and wanted to piece together what is 'just me being me' aka autistic traits, and what I could actually get some help with. I'm a very (overly) emotional person and I've often wondered if any of my emotional responses are caused by traits or if it's something else. I had hoped for ways to cope better with things (if there are any). I know that deep down I haven't changed, but I feel like I've lost myself, I feel like I don't know myself anymore. The idea of masking too.. I see people talk all the time about masking more than they thought, that they hadn't realised that is what they have been doing - I'm trying to come to terms with this too.. I just want to feel like the happy "quirky" person that I felt like before it all but I don't know how to find my way there... I see so many different experiences and so many different stories on here and other places, but Autism is such a broad thing and I figured that talking to someone one to one would have helped it be more personal to me and understanding my experiences. I don't know if this makes sense?! 

I think this community is a brilliant source of support - better than most ‘professionals’ in the NHS etc. Autistic people are the experts on what it’s like to be autistic - and are great at helping each other on here in my experience. 

Yes Martin - I can relate to what you write here. I had also felt ‘weak’ - but with greater understanding of autism I realised (just like you did) that’s I’d actually done quite well considering the extra difficulties I was trying to cope with all the time. And as you say - I finally realised that there WAS a group of people I did ‘fit in with’ - other autistic people! For me the diagnosis has been very positive - but for the first few weeks after I got it I did have a period of feeling a bit weird about it, and was looking at my whole past in a new light. I think for most people the diagnosis eventually is a positive thing overall. 

I’m sorry you’re experiencing these difficult feelings in response to your diagnosis. If it’s any comfort I’m pretty certain that lots of people have a response similar to yours. It’s not helped by the fact that there is so little support following a diagnosis - there should be something provided as it’s a lot to process. It can make us re-evaluate our whole lives in some ways. So it’s entirely normal that you should feel this way. 
The important thing to remember is that ‘you are still you’ - nothing has changed in that sense. You’ve been given a label - and labels given to us by the society we live in have to be kept in perspective. All it is is that you have certain traits, and this society has decided that if a person has this collection of traits (or some of them at least) then they are going to be classed as ‘autistic’. You are being put in a category by the society you have happened to be born into. Had you been born in a different society and in a different era you would not have been classified in this way. 

To be diagnosed in this way is meaningful on one level, and meaningless on another. You are you. You are still you, just as you were before the diagnosis. Why did you seek the diagnosis? In what way did you think it would be helpful to you to have this information? 
Also - WILL it be helpful to you? I think it can be a good idea to try to focus on the possible positives to you of having a diagnosis - the things that will make it ‘worth it’ to have one. 
For myself one example was: I often felt quite bad about certain things about myself - and the diagnosis helped me to be more forgiving of myself and the fact that I do find some day to day things  difficult that most other people don’t struggle with. It allowed me to be kinder to myself and not keep blaming myself and feeling I was ‘useless’ etc, or a ‘failure’, or ‘over-sensitive’. 
So if you can focus on the helpfulness of have a diagnosis then in time I’m pretty sure you’ll feel much better about it.

Give yourself time, and be kind to yourself. It really is ok - and this community is always here for you - you’re not alone :) 

Paper said:

£60 per session seems like a lot of money to me.

It is about the normal price for private therapy I believe, but you are paying for someone educated to a high level in psychology and with experience relevant to your needs, so it is actually pretty good vaue as these things go,

Obviously your financial situation is your business, but I think booking 2 sessions a month would be the minumum needed for a few months. More would help you get there faster but at this pace it has some chance at working.

Using a less qualified or experienced counsellor may work for you but it sounds like you have complex needs that really would benefit from someone who knows the subject and is trained on techniques to help you deal with it.

Maybe if you think about it as investing in your well being then it will feel less expensive.

But are you really lonely or are you just happy in your own company? Some people just need more alone time than others, this is true of NT's as well.

I think the people around you mistook intelligence for being OK, that seems to be quite common and lets face it there can be a lot of hostility towards people who are intelligent. The old "I went to the university of life" chestnut is alive and well, I've had people try and say that to me when they find out I've been to uni, they're so keen to tell me what a waste of time it was and what did I want to know all that stuff for anyway, they left school at 16 and can barely read. I remind them everybody goes to the school of life and stay there until they're dead and if they want to be dead from the neck up thats their problem not mine. Needless to say it's not a good way to make friends and influence people, but I dont' care, I don't want such people as friends.

I didn't expect to find any therapists in my area who specialise in autism, but there is one about a 20 minute drive away who says he specialises in adults coming to terms with being autistic. All the stuff he says sounds exactly like what I struggle with. I'm wondering whether it would actually be worthwhile, because £60 per session seems like a lot of money to me.

I left school in 2017, then moved on to university. No one mentioned autism to me at school or university. It wasn't until I finished university that I was Diagnosed. 

I was always in the top sets for science, Maths and English, so I suspect I may be an autism savant. This is a bit of a curse because I feel no one understands what I am talking about. 

I didn't have friends growing up and just played by myself e.g. lego, reading, photography, video games or walking. 

Making friends is really difficult in a world where you A) feel misunderstood like an outcast, B) just relied on yourself and C) is not designed by nor for neurodiverse thinking.  

It is exhausting trying to explain this to medical professionals. It is not normal to be so comfortable with being lonely. 

Then because I have been to university, didn't have friends though they assume everything is perfect and I do not warrant support. 

Something is broken is society where mass amounts of Autistic individuals are not getting validated for their concerns. 

BumbleBee said:

I just want someone to talk to who knows Autism well and I can organise my thoughts and learn more about myself.

My advice would be to get a therapist who has skills in autism and late diagnosis - they should be able to talk you through the issues that are troubling you.

Have a look on https://www.psychologytoday.com/gb/counselling

I see Nottingham and Derby on the list so hopefully there is one near you.

When you click on the city, click on the Filter button on the upper right and select Autism from the Specialities list to narrow the list.

Your sense of not understanding it is quite common for late diagnosed people and the following book may help you if you are still open to reading about it:

Very Late Diagnosis of Asperger Syndrome - Wylie, Philip_ Beardon, Luke_ Heath, Sara  (2014)
ISBN 9781849054331

Note that Aspergers is now covered under the general umbrella description of Autism these days.

Another good book to cover the basics and save some time with terminology etc is:

Understanding Autism For Dummies - Stephen Shore, Linda G. Rastelli, Temple Grandin (2006)
ISBN 0764525476

If you don't have the finances for a therapist then there are a few people on here you can try to add to your Friends list who may be willing to chat - browse the forums for those talking about similar experiences to yours that you feel "get it" and try adding them as a Friend so you can message them directly.