New adult asd diagnosis — Scope | Disability forum
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New adult asd diagnosis

and15
and15 Community member Posts: 73 Courageous
Anyone got any advice/insight on how they coped in the early stages of diagnosis thanks

Comments

  • Hannah_Scope
    Hannah_Scope Posts: 7,310 Disability Gamechanger
    Hello @and15

    Welcome to the community! :)

    I wanted to comment to bump your post. I do hope you find support and friendship in the community. Can I ask, are you asking for yourself? or are you helping support a friend / family member? 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • Albus_Scope
    Albus_Scope Posts: 2,911 Scope online community team
    Hey @and15 I was diagnosed ASD on my 44th birthday last year.  It's a bit of an emotional rollercoaster, but I will say please be gentle with yourself as there's an awful lot to process.  It seems fairly common to go through what I'd call a period of mourning, so just allow yourself to sit with your feelings as they're all very valid, but also don't be too hard on yourself.

      Late diagnosis means we have a lot further to look back on our lives and pinpoint issues we've had in the past that we can now say "Ahhhh, yeah now I understand why that happened!"  it can get quite distressing, but it's all worth it once you figure things out. 

    I found YouTube and Tiktok to be super helpful for me with coping strategies.  But the best advice is "now you know, just be yourself."  It's a time to get to know the real you. :) 
    Albus (he/him)

    Online Community Coordinator @ Scope

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  • hawkbanana81
    hawkbanana81 Scope Member Posts: 7 Courageous
    I was diagnosed autistic at 45. It was a huge relief for me to finally understand why I am the way I am. There were concerns throughout my medical records from aged 5 through into adulthood and although was seen as a teenager they made no diagnosis jus5 described me which was a description typical of someone on the spectrum. I often wonder if life could have been different if diagnosed younger? Would I have had the support I needed? Mind you I still have no support and am frequently non verbal due to autistic shutdowns which happen frequently. Would I have been treated so badly throughout my life? I don’t know. I’ll always have questions but no answers. I long for a different life, an easier life but that won’t happen. I accept who I am but often on the outside looking in, wondering how others manage conversation so easily when simple interaction is almost impossible for me. I long for a hug but can’t tolerate physical contact. I think in some ways I mourn a life I’ve never had but long for. 
  • Bettahm
    Bettahm Community member Posts: 1,439 Disability Gamechanger
    @hawkbanana81
    I was diagnosed in my late 50s. It explains everything but doesn't help with anything. Never been able to hold down a job, never made any friends, never had a relationship or wanted one either. Social engagement is distressing and I have had alcohol abuse problems from being in work, or even in a church environment. Sensory things which I thought were peculiar to me I now know are down to autism. My rage, bad temper,  is down to autism. Just about the only good thing is this special interests thing which for me is animals.
    Love animals so much.
    Like you I dont like being touched at all. I seem to be lacking in emotions and do have alexithymia apparently. Now in my early 60s with mh issues, depression, bad anxiety, agoraphobia, more, most probably I'm told due to being an undiagnosed autistic person most of my life. Theres not much understanding out there, or tolerance even in the medical profession, even in mental health professionals!
    Best wishes to you as you navigate this new diagnosis.
  • Bettahm
    Bettahm Community member Posts: 1,439 Disability Gamechanger
    @hawkbanana81
    There are some helpful vids on YouTube .
    Orion Kelly is a late diagnosed Australian guy, he has a lot of good stuff on there.
    Also Ted Talks Autism is another useful one. 
    @Albus_Scope knows some more...
  • and15
    and15 Community member Posts: 73 Courageous
    Thank you all,I got my diagnosis 5 days ago and I am still just sat with it in a bit of a void,where now and then something from my past cokes into my mind and makes me challenge how I think about it and today it was how much I just emulated other people just to fit in r,I am hoping that this numbness will pass and be replaced with clarity to a degree cause at the moment I feel like everything I hsve known about myself Is not what I thought 
  • WhatThe
    WhatThe Community member, Scope Member Posts: 892 Pioneering

    Hello and,
    I recognise everything you've described especially your last line - it felt like my whole life had been a lie.   

    I spent a week on the sofa in mild shock, raging anger and grief, particularly sad that my parents had never known and would never know. I spent a year or two in disbelief as things revealed themselves to me faster than I wanted. 

    Finding Scope is a good move - I didn't know about Scope and could only bear to read about the condition in small doses. Chris Packham's documentary helped me understand lots. He cries at the end from the sheer effort of trying to explain himself.    

    I don't know if this unravelling process ever completely stops but as Albus advised, be extra gentle with yourself because this is massive, yes.

     
  • and15
    and15 Community member Posts: 73 Courageous
    Thank you @WhatThe .I've just received the reasonable adjustments letter from the psychiatrist prior to the full letter and seeing it in black and white feels like a massive shock all over again,feeling numb but conscious to all the problems I need to address before I can even consider personal acceptance.every now and again I get flashes from my past and now I see them through the eye of an asd lens,some of it positive some of it makes me feel sad/angry at the time and opportunity wasted.even today in an interaction with a colleague I found myself appearing like and observer assessing my own excitement over providing a problem solving solution in a structured approach through an asd lens.

    This is taking some getting used too and is not the easiest to deal with
  • Albus_Scope
    Albus_Scope Posts: 2,911 Scope online community team
    Things can't be rushed here, it'll be a slow process, but things will slowly start to slot into place in your brain. :)

    I'm thinking of doing a post with lots of helpful links to various resources.  There's not a lot of help once you finally get diagnosed. 
    Albus (he/him)

    Online Community Coordinator @ Scope

    Concerned about another member's safety or wellbeing? Flag your concerns with us.
    Want to give us feedback? Complete our feedback form now.
    Opinions expressed are solely my own.
    Neurodivergent.

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