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Guest post: Getting an ASD diagnosis at 46

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  • tracybates
    tracybates Community member Posts: 3 Listener
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    Ariel said:
    @DianaW

    High IQ, seeing the world differently and not fitting in does simplify it significantly.

    A lot of autistic people are subject to a lot of negative treatment growing up, and so it can be difficult to separate cause and effect, but the professionals know what they're looking for. I found that the things that helped me to determine that my traits were not just the result of my past were specifically how autistic people 'see the world differently'. The sensory issues, for example. The black and white thinking. The rigidity and inflexibility over, frankly, quite ridiculous things.

    Social aspects, meltdowns/shutdowns and even special interests, could perhaps have been explained away as the impact of my childhood, but other things couldn't so easily. And it's the combination of these many factors that led me to my diagnosis, though importantly not all autistic people display exactly the same combination - diagnosis comes from showing enough of them in combination, AND that they must have been present throughout your life, AND that they must be causing some level of difficulty/negative impact.

    Additionally, I do think that it is worth taking a lot of time to think over your life before convincing yourself either way, if you are now wondering. If you have seen yourself as 'normal' all your life, it takes a long time to recognise how many of your behaviours are not. Interestingly, people are not likely to have pointed them out to you (though, if you're anything like me, it will explain all of those failed social interactions once you realise!). Even my husband came up with a whole list of 'weird' things I did, during my diagnosis, which he had never before pointed out as unusual! And even though I'd gone through a period of self-diagnosis before visiting my GP, looking for every possible confirmation that I was autistic, I was still discovering all of my autistic traits and behaviours months after I was diagnosed.
    well said, pre diagnosis I was very hard on my self, putting so much pressure on myself to be "normal" questioning why I was different and why I did this or thought that,  I had a significant self awareness and low self esteem.I had a different identity for each facet of my life, I compartmentalised myself and everything as a coping strategy, without knowing why. I'm not saying that diagnosis changed all that, I am still learning almost twenty years later, I no longer feel the need to compartmentalise and emotionally detach, unless I am really overwhelmed, understanding who I am has help me become whole and cope better. I also have a strong faith as a Christian and that has also helped me discover who I am and that its ok to be different.

  • Dwayne1961
    Dwayne1961 Community member Posts: 6 Connected
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    Violet!  
    Your courage and clarity, in sharing your story is a great comfort to me.  I have had all the classic signs & symptoms of Asperger's Syndrome all my life!  But they only got around to diagnosing me in these last few months -- and I am 55!   :o  Between THAT and a recent diagnosis of hydrocephalus -- which is causing the early stages of dementia which I am also dealing with -- I have been feeling extremely overwhelmed.  So, thank you for Sharing your story.  It has been a great encouragement to me! 
    Dwayne   :)  
    Light & Love!  )O(  
    The Reverend L. Dwayne Decker (ULC) 

  • DianaW
    DianaW Community member Posts: 30 Connected
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    Ariel,

    Thanks so much for taking the time to work through all this, which is really reassuring for me.

    The family member who's always tried to blame me for everything wrong suffers very obviously from what you identify as "The black and white thinking. The rigidity and inflexibility over, frankly, quite ridiculous things." But he won't even contemplate the possibility of someone else - least of all his ever-resented older sister - having any valid point of view when disagreeing with him.
    After many years of intermittent psychotherapeutic support, I've got a fairly good handle on what went wrong in the family - but having been forced to deal with his aggression again for the last couple of years lately has unsettled me badly, making me less secure than I was before that or than I hope to become again in future. So this topic caught me at a particularly vulnerable stage.

    Thanks again for helping me to see this more clearly.
  • MerlijnTaams
    MerlijnTaams Community member Posts: 2 Listener
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    Reading the blog and comments I think we all share the same experience , an eureka moment after an adult ASC diagnosis.
    Myself I was diagnosed with Asperger's at 35, felt both the under/over flip and the shattering of my 'self'.

    Unfortunately never being able to believe in 'positive thinking' placebos I now find myself slipping between the cracks of society. 
    I am too high functioning to be 'disabled' and too disabled to work, while getting told by charities and the NHS I have to figure out myself how to function in a neuro-typical society.
    Because every person on the spectrum is 'unique' and there are structures or lists to advise non-neuro-typical people who need lists and structures.
    Everything seems to be a direct contradiction from looking for jobs you 'feel' suit you, then being told to be 'realistic' to Disability Protection Acts that only protect the employer and not someone with an ASC.

    What is very clear is that no place will be made for people on the spectrum and we will just have to adapt and act normal to be allowed to survive as some of the poorest and weakest.
  • joannarashelle
    joannarashelle Community member Posts: 135 Pioneering
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    But also some of the strongest and rich in our outlook, we have the ability to 'feel' things on such a magical scale that others can't ever feel. 

    Yes we feel pain. And my God how strongly do we feel pain.

    But we also feel such pleasure from the simplest things. 

    Flip it on its head.

    That's how I'm learning to cope xxx
  • MerlijnTaams
    MerlijnTaams Community member Posts: 2 Listener
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    But also some of the strongest and rich in our outlook, we have the ability to 'feel' things on such a magical scale that others can't ever feel. 

    Yes we feel pain. And my God how strongly do we feel pain.

    But we also feel such pleasure from the simplest things. 

    Flip it on its head.

    That's how I'm learning to cope xxx
    Unfortunately in this world you have to work to live and positive thinking doesn't put food on the table.

    'No DSS' is now the world we live in just like there used to be 'No Irish, No Blacks'.
  • joannarashelle
    joannarashelle Community member Posts: 135 Pioneering
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    @MerlijnTaams

    Positive thinking can get you through anything.

    Without it I would not be here.

    Best wishes 
  • lonewarrior
    lonewarrior Community member Posts: 23 Connected
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    Saw violetfenns post on my Facebook timeline, my wonderful daughter put it there. Hope this doesn't sound silly but has anyone found out which planet "we" may have come from? Have always felt out of the loop. I have to adapt myself to be certain kinds of person to blend in. Brian.
  • Vikkivik77
    Vikkivik77 Community member Posts: 2 Listener
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    I promised myself I would get assessed this year but then I don't wan to waste anybody's time or admit I am differnt. 
    I have three with ASD and I have the ADHD  label myself, I guess when I am ready I will go for assessment x
  • Vikkivik77
    Vikkivik77 Community member Posts: 2 Listener
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    Saw violetfenns post on my Facebook timeline, my wonderful daughter put it there. Hope this doesn't sound silly but has anyone found out which planet "we" may have come from? Have always felt out of the loop. I have to adapt myself to be certain kinds of person to blend in. Brian.

    I am from the paladians if that helps?? You will find many of us are lightworkers and indigos. The kids with ASD are the new evolution. Or did you mean something else? 

  • lonewarrior
    lonewarrior Community member Posts: 23 Connected
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    Hello vikkivik77 I mean as long as I can remember I always felt like I didn't belong, always felt I was observing others and .I am now fifty three and still don't fit in with anyone, I adjust to be "ok" in a situation. I cannot understand why others talk so much nonesence just for the sake of it? I feel I have coped ok in my life but having a justification as to why is very reassuring, I am normally the "one" who is different.
  • AdultwithADHD
    AdultwithADHD Community member Posts: 1 Listener
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    "I just needed to get my act together, get organised, stop worrying." Can absolutely relate to this, and my life also changed for the better when I finally got a diagnosis for ADHD, aged 31, especially combined with recent UK legislation eg the Equality Act. Pre-diagnosis, a performance issue at work meant I was on my way out. Today, employers ask what they can do to help, and I'm learning how to answer. 
  • VioletFenn
    VioletFenn Community member Posts: 124 Pioneering
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    Oh wow, I'm overwhelmed with the response to this - thanks so much to everyone who's taken time to reply!

    @MerlijnTaams  - I'm in the same place as you, too high functioning to be classed 'disabled' but incapable of most standard employment. I've worked my way round it by becoming self employed as a freelance writer; at least that way I can fit work around my own issues as well as the difficulties that come with having an autistic son (who is also very high functioning and mental draining at times!). Self employment isn't for everyone (and it's certainly not the easy option as it comes with difficulties such as bookkeeping etc), but it's been the best option for me so far. 

    Hi @Dwayne1961 - glad my story's been of help! It's always better when you realise you're most definitely not alone ;) 

    @Vikkivik77 - I have ADD as well. I'm not formally dx'd with it (apart from anything the waiting list in my area is horrendous), but have enough symptoms that my GP agreed it was definitely there. I'm already on medication for Generalised Anxiety Disorder (it's a running joke that I have a 
    'full house' in SEN Bingo ;)  ), so he changed them to one that is known to help with ADD as well - it's made a big difference.

    Thanks again to everyone who's been in touch since reading my story - as of this week I am Scope's ASD Advisor, so if anyone has questions do come post on our corner of the forum!

    Vi x
  • joannarashelle
    joannarashelle Community member Posts: 135 Pioneering
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    Can't agree more with what @VioletFenn said about going self employed; although I know it's not for everyone and does have its drawbacks like anything does, but it means One can have control over situations and our environment.. 
    Feeling overwhelmed was probably the hardest thing I had to cope with while working with others; the noise the lights the office small talk oh goodness how I can't stand office gossip or gossip in general.. does anyone else struggle with this? 
    Or people wanting to know your business?!

    As a woman I'm meant to enjoy tittle tattle but I actively avoid it!
    It seems to hurt my head of that makes sense and leaves me feeling mildly irritated.. sometimes not so mildly...!
    I'm also not competitive at all like others seem to be in the workplace, much rather work on my own for so many reasons though One can get lonely..

    It's one of the reasons I joined this website.. to connect with others like me. 

    And I'm so pleased I did.

    Everytime I read a post about Autism/Aspergers it helps me in so many ways.

    At last I don't feel so alone in what can be such a complex condition to live with. 

    Best wishes to everyone on here 


    xxx

  • DianaW
    DianaW Community member Posts: 30 Connected
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    Sam_Scope said:
    Oh wow! So did you think you may have austistic traits before reading this or after? What is it that is worrying you @DianaW
    No, I don't think that I have autistic traits at all, Sam. I've now studied your useful link (and the further link to the NHS site) and none of that rings any bells at all. That's not defensiveness; that's literal truth. I may be the one person in this forum who isn't on the ASD spectrum at all; indeed, I'm increasingly certain of that. I have problems with depression and anxiety but who wouldn't, given my family and school experiences? And the depression is so directly related to recent abuse - both long before I first got psychotherapeutic help and again, very recently - that it clearly diminishes eventually, given enough support to tackle its short- and medium-term effects on me. The generalised anxiety is more of a long-term problem but, again, has just been turbocharged by a long period of enormous stress, so I'm much more prone to anxiety attacks than usual. What worried me so much about earlier posts was the combination of three specific supposed ASD indicators that I do share, coming on top of having recently been abused again by someone who's hell-bent on stamping me as the one in the family who has the serious problems, not him. Since I also have well-developed skills of empathy and insight which he so obviously lacks, that doesn't make any sense. But when one's lifelong tormentor has just been persistently forcing this abuse on one and is apparently getting other people (not only close family members but supposedly independent non-medical professionals) to endorse that abusive attitude, it suddenly seemed hard to be as emotionally sure of myself as I had been a few years ago. I hope to be that secure again, once this horrible period of further abuse is much further behind me, but the sudden threat of there being perhaps some truth in the abuser's wrongheaded view of me threw me badly off-balance and I momentarily doubted my own sense of myself. While I share Joannarashelle's dislike of tittle-tattle and preference for working by myself, both come from having been brought up in the household of an old-fashioned lawyer with very high ethical standards. Nor do I find that competitiveness for its own sake makes any sense to me, although I do try to do my best at whatever I attempt. I don't see wasting working time gossiping or messing about instead of concentrating on my work as the proper way for a professional to act, nor do I want to beat other people for the sake of beating them. I ended up following my father into his profession, although it was entirely of my own volition. Growing up with a passionate and dedicated lawyer made his children naturally effective legal thinkers and not only I but two of my younger siblings did so, despite his misgivings about its being a good idea. So, still no apparently autistic traits that don't have very clear roots in nurture, rather than nature.
  • Dwayne1961
    Dwayne1961 Community member Posts: 6 Connected
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    I can echo what @joannarashelle says...    
    "... One can have control over situations and our environment.. 
    Feeling overwhelmed was probably the hardest thing I had to cope with while working with others; the noise the lights the office small talk oh goodness how I can't stand office gossip or gossip in general.. does anyone else struggle with this? 
    Or people wanting to know your business? ..."   
    It was precisely those reasons that drove me onto the disability pension that I have been subsisting on since 1992.  Those circumstances kept triggering my PTSD... as well as me not responding well to them, in general -- of course, NOW I can see the symptoms of my Aspergers, in my inability to cope with all that...    :/  If only I had known about all of that, back then... 
    Dwayne
    Light & Love!  )O(  
    The Reverend L. Dwayne Decker (ULC) 

  • tmd63
    tmd63 Community member Posts: 2 Listener
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    I too had a late diagnosis. It took my ex wife telling me about my sons diagnosis and describing his behaviour for me research aspergers online tests and then using them to speak to my gp to get a confirmed diagnosis.
  • joannarashelle
    joannarashelle Community member Posts: 135 Pioneering
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    @tmd63
    and how has it made you feel? Are you relieved with the diagnosis or confused?

    I'm scared angry relieved frustrated euphoric all at the same time after diagnosis.. though I do know I want to go back to all the times and events in my life especially when a little girl, and just hold that girls hand and say it's alright I will be there for you..
    Hope you find peace with the diagnosis 

    best wishes 

  • tmd63
    tmd63 Community member Posts: 2 Listener
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    http://www.rdos.net/eng/Aspie-quiz.php @joannarashelle I didn't feel anything really. I often thought "am I a robot or an alien" as I had no feelings to speak of. I could definately say I didn't get angry. I do remember hearing a saying that I really associate with "I can watch the fall of a leaf and the death of an empire with equal compassion". It did help me understand why I do some things and why others can be distant or aggresive when I speak to people.
  • joannarashelle
    joannarashelle Community member Posts: 135 Pioneering
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    Hello @tmd63

    Love that  quote "I can watch the fall of a leaf and the death of an empire with equal compassion".
    Totally get that!
    Though I love to watch leaves fall...! (adore nature fullstop)
    But the sentiment in the quote resonates and I comprehend the meaning

    I have quite often felt I am not of this planet though the planet itself I love and have great fondness for; its the people on it that freak me out...!
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