Post Diagnosis Support?

Hi all, 

I was diagnosed with ASD earlier in the year. Even though it is something I have thought and believed my whole life, I feel like the diagnosis has turned me upside down and I feel like I don't understand myself anymore. It felt like the assessor saw things in me that I don't see myself, but in the report she wrote, nothing of the sort was described. I received a post-diagnosis email but there wasn't much on there either. I just want someone to talk to who knows Autism well and I can organise my thoughts and learn more about myself. I have tried reading things online but it just doesn't seem to be helping. I want somebody to talk to about it all that knows what they are talking about. I just don't know where to turn.. I feel so isolated and alienated from myself, did anybody else have this experience? I'm from the East Midlands, can anybody signpost me to something that may help? I tried a peer mentoring-type service, but once I signed up I heard nothing more from them, I have sent follow up emails with no response also.. I have joined local groups on Facebook but it all seems to be child-centred and parents looking for school placements. 

Any feedback would be greatly received, I don't want to keep feeling this way.

Parents
  • 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 :) 

  • 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?! 

  • 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 :) 

  • That’s so kind of you - thank you Blush

    I hope you have a lovely day - I think you are going to work all this out and be so much happier in the long run as a result Sun with face

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