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Guest post: Getting an ASD diagnosis at 46

VioletFennVioletFenn Posts: 124Member Pioneering
edited July 2017 in Guest blogs

Funny isn’t it – however much you ‘know’ something in your head, it often doesn’t seem real until it’s written down in black and white and confirmed by someone else, so that you know you weren’t imagining it after all.

In April 2016 I was formally diagnosed with Asperger’s Syndrome. It clearly didn’t come as a surprise to many people who know me in person, but it was a bit of a surprise to me. I’d had 46 years of being told I was fine - I just needed to get organised, get my act together, stop worrying. After all, why should I think I was any different to anyone else?

 Lady - Violet - sitting on a red chair laughingPhotograph: Susie Cavill

I went into my ASD assessment half expecting to be told that I was actually just anxious, needed to change my diet, or any one of the usual vague explanations I’d been given over the years. So I was somewhat taken aback when the actual response was, ‘I have absolutely no doubt that you are a clear cut example of an adult with Asperger’s.’

That’s it. Half an hour in a hospital consulting room changed my entire life. Because however many times that well-meaning friends and family say in a reassuring manner, “A diagnosis doesn’t change anything, you’re still you,” they’re wrong.

The Me they know is the Me who has been struggling to be ‘normal’ for nigh on fifty bloody years - half a century of knowing damn fine that I don’t fit in, whilst not having the faintest idea how to do things ‘right’. Most people won’t have known this, because why would I tell them? It would only have made me sound even more nuts. But my life has always been a daily struggle with Not Knowing.

It was only when my youngest son was going through the diagnosis process for autism that I started thinking ‘ohhhhh’. And then a couple of his assessors on separate occasions said ‘Yeah, you should maybe get yourself assessed, there’s definitely bells ringing there’. I wrote an article for the Metro about autistic kids and had literally hundreds of replies from parents telling me things their own kids did, and all the time I was thinking ‘I do that too!’ But even then I thought that maybe I was imagining it – projecting my weird thoughts onto others so that they would agree with me. My head has not been a peaceful place for long time, I can tell you.

 But these days it (almost) is. Because now I know that I am not the broken, underachieving person that I thought I was. Now I know that actually, I’ve done pretty bloody well, given what I’ve been up against.

 

So no, nothing has changed. But everything is different.

If you'd like to ask Violet a question about ASD, anxiety disorders or parenting autistic children you can now do so in our 'Ask an ASD advisor' section.


Violet is a freelance writer who was diagnosed with Asperger’s Syndrome in her forties. Her article, ’Things you should never say to the parents of an autistic child’ is still one of the most-shared items ever on Metro.co.uk. She also has a diagnosis of Generalised Anxiety Disorder, which she manages through a combination of meds, humour and downright bloodymindedness. 

Replies

  • MDonoghueMDonoghue Posts: 11Member Connected
    I was diagnosed as having a learning difficulty aged 54, this result came as a relief, in many respects.  Under then  became Over, when I take into consideration my difficulty. I haven't done too badly.
  • Sam_ScopeSam_Scope Posts: 7,653Administrator Scope community team
    @MDonoghue I can understand that it must be a relief! My issues are with chronic illness and when I finally got a doctor who listened to me and understood that I was ill and needed support, it was a huge relief.  It was good to know that I was believed and to know that I was going to get the treatment I needed!
    Scope
    Senior online community officer
  • Sam_ScopeSam_Scope Posts: 7,653Administrator Scope community team
    @joannarashelle you mentioned that you have had a recent ASD diagnosis, I wondered if you agreed with @VioletFenn and what your experience of a late diagnosis was?
    Scope
    Senior online community officer
  • Sam_ScopeSam_Scope Posts: 7,653Administrator Scope community team
    @Tuliplips I saw your post saying you are a 48 year old lady with ADHD - ASD and Fibromyalgia and wondered what you thought about this? Did you get diagnosed earlier or later in life?
    Scope
    Senior online community officer
  • Sam_ScopeSam_Scope Posts: 7,653Administrator Scope community team
    @lovesColdplay I remember you saying that you had a diagnosis later in your life, do you connect with what Violet says here?
    Scope
    Senior online community officer
  • joannarashellejoannarashelle Posts: 135Member Pioneering
    Had to say that yes "nothing has changed but everything is different"!
    I'm 46 too.. having spent my life feeling somewhat 'different' but not knowing why.. I was academically bright at school yet the simplest instruction I'd be given I couldn't follow through or somehow comprehend. 
    Teachers would be baffled verging on irritation as to how this pupil with most of her essays displayed on the wall as a shining example of how to write, couldn't follow a simple instruction I remember to this day how embarrassed I would feel being asked to do something simple knowing I would struggle with the concept. 
    Yes I learnt to read music and play the piano at 6.
    Yet couldn't draw a circle with a compass.
    Yes I could do all my friends Algebra homework. 
    Yet couldn't do simple arithmetic without counting on my fingers (which I still do to this day!!)

    I can instruct and advise an owner of a dog that is attacking their baby, giving them concise yet gentle solutions. 
    Yet pace the floor if asked to go for a simple meal in a pub. 
    I remember walking to school with my friends and listening to them chattering about Duran Duran and how they fancy this one that one.. to feel accepted I would try and involve myself with their chatter even fibbing as to how I would dream of the lead singer yet feeling disengaged and wondering how they could be so silly.. I have never liked small talk it irritates me always have.. and now I know why...

    I've felt like an alien walking down the road as if I don't belong.. been given anti depressants on and off for 20 years.. seen countless therapists even psychiatrists yet not one could say "hold on a minute this could be something other than social anxiety"..

    I realise it must've been difficult to diagnose perhaps.. after all we are all on a 'spectrum' and the condition varies from person to person.. doctors don't know everything and they're not specialists.. at the risk of sounding flippant let me say I have had to accept that it took me until the age of 46 to be diagnosed and now I have something tangible to work with instead of against.. 
    Yes I could get angry that they didn't spot it earlier, resulting in a calmer less confusing life for me. 

    But I use my late diagnosis to its advantage..

    After all if I can live in a world where the best part of 46 years has felt like a different planet to me, 

    then I can do anything xxx
  • Mand1001Mand1001 Posts: 2Member Listener
    I can really relate to this so much, my son is awaiting assessment for autism and I've been doing a lot of reading and researching too, and I read about autism and how girls go unnoticed as they learn to mask. It was like someone had put a description of me and how I've felt for years. All of a sudden things made sense, and there's a reason I feel like I do. I'm going to get assessed as I need to see it in black and white too, just for my own benefit. I know there's a reason I've felt so anxious and overwhelmed and overthink everything, and why I find certain things difficult. 

    I have had counseling and CBT but just couldn't fathom why I felt like I did. 

    Thank you you for this article, it's nice to read something from someone who gets exactly how I feel.
  • joannarashellejoannarashelle Posts: 135Member Pioneering
    @Mand1001 just read your post! 
    Over thinking and feeling overwhelmed.. wanting to hide away from stimuli.. even bird song for me can make me jittery and I adore bird song it can be difficult..!
    Found myself nodding my head in agreement with your post. It can be horrid really difficult not understanding ourselves I wish I could re write so many situations in my life and how I handled them or should I say struggled with them..!

    However just knowing I'm not alone in what can be a daily inner struggle, is comforting and reassuring 


    Best wishes 

    Joanna xx
  • Mand1001Mand1001 Posts: 2Member Listener
    @joannarashelle thanks, yes just knowing I'm not alone makes a big difference, it's nice to have people who understand  :)
  • joannarashellejoannarashelle Posts: 135Member Pioneering
    edited February 2017
  • casscass Posts: 1Member Listener
    Even though it took over 3 yrs to got my diagnosis of Aspergers I'm so thankful for an official diagnosis. I understand my strengths and weaknesses better now and can use to my advantage. Also the extra bit if understanding from others is a huge bonus too especially with doctors, dentists etc. Family took a while to accept and originally I 'wasn't allowed' to tell others but they much better now. Friends were all fab! 
  • VioletFennVioletFenn Posts: 124Member Pioneering
    @joannarashelle - oh my, you could have been talking about my own teenage years back there! I've always been a high achiever intellectually whilst being almost incapable of coping with the basics of day to day life. And no, I never felt as though I 'belonged', either.

    The only thing I'd disagree with is the concept of 'everybody being somewhere on the spectrum'. I know that research bounces in and out of agreeing with this, but in my view you're either autistic or you're not, and it's those who are that then sit at different points on the spectrum. That's just my personal view though, obviously.

    @cass  - isn't it funny how family can sometimes be the least able to accept the diagnosis? Mine all found it very hard to accept my youngest son being dx'd, but luckily it worked in my favour because by the time my own dx came around they'd got used to the concept of autism (and that it wasn't the negative life sentence that so many people think it is). And yes, it can be a definite advantage to have an actual Thing when it comes to dealing with medical bods and authorities, etc.
  • Sam_ScopeSam_Scope Posts: 7,653Administrator Scope community team
    Such a great post and brilliant comments, I am pleased to let you all know that @VioletFenn will become our ASD advisor in February so you will be able to chat more with her soon! 
    Scope
    Senior online community officer
  • lovesColdplaylovesColdplay Posts: 15Member Connected
    Best wishes :-)
  • MDonoghueMDonoghue Posts: 11Member Connected
    I failed my Eleven plus and ended up in a junior secondary, most of my friends passed - so I ended up essentially alone. After 1 and a half years secondary education, they let me out into the big bad competitive world. Naked in terms of credits etc etc. Over the years I had many jobs, predominately manual labour.
    I could not learn the difference between left and right, although sat comfortably and holding my own, when it came to the Social Science, religion and philosophy. My verbal skills are certainly more pronounced than my difficulties. Incidently I ended up teaching deaf blind young people, then 12 years as a senior, working with people with learning difficulties.

  • sandra123asandra123a Posts: 8Member Listener
    hi violet i was diagnois at 39 with austim asperger syndrome i had since i was baby but mum notice change in my from age 7 had very bad temper has got older now learn control my temper still fine hard to copy with my illness why get out open talk about my life too short just get on with life leave past behind you look  to fresh start in life
  • MrsLogicMrsLogic Posts: 42Member Connected
    Hi Violet

    I think that we've also corresponded via Twitter and I was delighted to read about your experiences regarding obtaining a late diagnosis of ASD.  I was dx at the age of thirty-nine and it changed my life in many ways, some bad, others good - that's pretty much why I write my 'Faspie' blog about.  It's great to hear that you're going to be Scope's ASD advisor too.

    Look forward to chatting more in the future,

    Jo

  • sandra123asandra123a Posts: 8Member Listener
    hi violet dont anydiffernet body else like had austim all my life very young tener age 2
  • piccolo8vapiccolo8va Posts: 1Member Listener
    I've just been diagnosed age 40. Now I can learn to accept both my strengths and my difficulties. World is still overwhelming but I am really liberated to know that there's a reason for it. I am the naughty autie! 
  • joannarashellejoannarashelle Posts: 135Member Pioneering
  • VioletFennVioletFenn Posts: 124Member Pioneering
    Thanks for all the replies to this! *and a wave to @MrsLogic *!

    For all we do have to 'get on with life', I firmly believe that it helps to acknowledge the past and how the then-undiagnosed ASD must have affected it. Because that way we go into the future fully armed ;) 

    I'm hugely looking forward to working with Scope and getting to know more of you :) Vi xx
  • ArielAriel Posts: 16Member Courageous
    Great post.

    I also received an adult ASD diagnosis, and I've often described it as my 'permission to stop fighting'.

    I went through my life being, to be honest, pretty successful. But some things I just could not get right. And I was struggling below the surface constantly, with things that seemed so basic to everyone else.

    All you can keep telling yourself, when you think it's 'just you', is: "People a little older than me all seem to have it together. If I just keep trying as hard as I can, it'll come." But, as you start getting older, you wonder when it will come. How long can you continue justifying your struggles with 'I just need more time and I'll be like everyone else'?

    My diagnosis made everything click into place. And it took a long time to realise how obvious it was, and how it affected almost every element of my life. It was like a screen had been lifted. I was suddenly so aware of my behaviour, and somehow I never had been before.

    I am very fortunate to have a GP that took me seriously the moment I walked into the office and told her about my concerns. She gave me the most wonderful gift, by agreeing to refer me without putting up a fight. Now, as a result, I can accept who I am and find what works for me, instead of fighting to try and be the person I thought I was.
  • joannarashellejoannarashelle Posts: 135Member Pioneering
    @Ariel I've just read your post and your words helped me immensely, 'pemission to stop fighting'..

    Thankyou so much this will be my mantra, I feel like I've 'fought' all my life..

    Best wishes and thankyou for making me feel 'human' 

    Joanna xxx
  • tracybatestracybates Posts: 3Member Listener
    what a refreshing article, I was diagnosed in my thirties, when I was at university, with ASD, though they categorised it as high functioning Asperges. 

    like Violet, getting that diagnosis finally made everything make sense to me. The high IQ, seeing the world differently from everyone else, not fitting in, all made sense to me. I have since come to see that despite my brain being wired differently from everyone else it is not a curse, it is a gift and I can use that gift to reach people who have similar gifts, to empathise with them, to understand them, to love them and to love myself...no longer "the weird kid" ..flawless, unique, special.



  • joannarashellejoannarashelle Posts: 135Member Pioneering
  • DianaWDianaW Posts: 30Member Connected
    But surely there's more to this diagnosis than just the combination of "high IQ, seeing the world differently from everyone else, not fitting in" ?

    One could say all that about me but no doctor has ever suggested that I could possibly have this condition, as opposed to having had very clever parents and having been put into the wrong year when I first went to primary school, which was socially disastrous. Add in a narcissistic and deeply controlling mother, a bipolar brother with an unacknowledged personality disorder and far too much experience of being bullied and what do you get? Not necessarily ASD, surely?
  • joannarashellejoannarashelle Posts: 135Member Pioneering
    @DianaW
    Hello Diana how are you hope you're well
  • joannarashellejoannarashelle Posts: 135Member Pioneering
    @DianaW

    Hello Diana how are you
  • HS2HS2 Posts: 2Member Listener
  • HS2HS2 Posts: 2Member Listener
    Hi

    Well I'm 49 and I got a diagnosis of Aspergers Syndrome last year.

    My wife read your blog. I think it opened her eyes quite a bit.

    I think when you know you don't quite fit in it leaves you asking why.

    The catalyst for me was when my daughter went for the assessment and got the diagnosis.

    After much thought I took the plunge. It was absolutely no surprise to me that I was diagnosed.

    Thank you for your excellent article. My wife had a lightbulb moment having read it
  • joannarashellejoannarashelle Posts: 135Member Pioneering
    Hello @DianaW itw more to do with how our brains work than what has happened to us if that makes sense
  • tracybatestracybates Posts: 3Member Listener
    DianaW said:
    But surely there's more to this diagnosis than just the combination of "high IQ, seeing the world differently from everyone else, not fitting in" ?

    One could say all that about me but no doctor has ever suggested that I could possibly have this condition, as opposed to having had very clever parents and having been put into the wrong year when I first went to primary school, which was socially disastrous. Add in a narcissistic and deeply controlling mother, a bipolar brother with an unacknowledged personality disorder and far too much experience of being bullied and what do you get? Not necessarily ASD, surely?
    Hi Diana, I agree there is much more to the diagnosis than just the combination of "high IQ, seeing the world differently from everyone else, not fitting in"  these things in isolation are not always indicators of ASD . Autism has a very broad spectrum, everyone is different and there are far more factors involved in my diagnosis than I have listed. Diagnosis or statementing, is not given lightly, it is the result of testing and analysis. 
    so rather than it being a negative label for me my Diagnosis made sense.

  • DianaWDianaW Posts: 30Member Connected
    I appreciate that, for you, this diagnosis was helpful. For me, the mere hint of its being somehow a possibility is an alarming one because it seems to echo all the familial abuse that I encountered over the decades, some very recently.

    Are there other major indications of ASD which one should know about, to reinforce either its inapplicability to me or the reverse?
  • Sam_ScopeSam_Scope Posts: 7,653Administrator Scope community team
    Hi @DianaW there is quite a bit of info on ASD here but of course no one can offer diagnosis over the internet.  If you are concerned, you should seek professional support and information, your GP would be a great start.

    I think the stories shared here shows that an ASD diagnosis doesn't stop you leading a happy life, it means that you can get the support that you may need.  
    Scope
    Senior online community officer
  • joannarashellejoannarashelle Posts: 135Member Pioneering
    Hello @DianaW

    Totally get why you may be feeling alarmed, try and remember it's how we with Autism/Aspergers perceive things differently to others that can cause our anxiety and often bewilderment. 
    It's not what has happened to us though goodness only knows I know first hand about abuse in all it's forms
  • joannarashellejoannarashelle Posts: 135Member Pioneering
    @DianaW
    But I found if we know we have autistic traits we can protect ourselves more adequately from how life's events and stimuli can affect us so dramatically
  • DianaWDianaW Posts: 30Member Connected
    I wasn't at all concerned until I read this thread, Sam!

    It's left me feeling distinctly unsettled but I don't think that I should be bothering my GP with what I really don't believe to be a relevant possibility.

    Surely self-knowledge is always useful in that way, no matter whether someone has autistic traits or not, joannarashelle?
  • joannarashellejoannarashelle Posts: 135Member Pioneering
    Best to be equipped in all ways we can be
  • Sam_ScopeSam_Scope Posts: 7,653Administrator Scope community team
    Oh wow! So did you think you may have austistic traits before reading this or after? What is it that is worrying you @DianaW
    Scope
    Senior online community officer
  • ArielAriel Posts: 16Member Courageous
    @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.
  • tracybatestracybates Posts: 3Member Listener
    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.

  • Dwayne1961Dwayne1961 Posts: 6Member Connected
    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) 

  • DianaWDianaW Posts: 30Member Connected
    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.
  • MerlijnTaamsMerlijnTaams Posts: 2Member Listener
    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.
  • joannarashellejoannarashelle Posts: 135Member Pioneering
    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
  • MerlijnTaamsMerlijnTaams Posts: 2Member Listener
    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'.
  • joannarashellejoannarashelle Posts: 135Member Pioneering
    @MerlijnTaams

    Positive thinking can get you through anything.

    Without it I would not be here.

    Best wishes 
  • lonewarriorlonewarrior Posts: 23Member Connected
    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.
  • Vikkivik77Vikkivik77 Posts: 2Member Listener
    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
  • Vikkivik77Vikkivik77 Posts: 2Member Listener
    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? 

  • lonewarriorlonewarrior Posts: 23Member Connected
    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.
  • AdultwithADHDAdultwithADHD Posts: 1Member Listener
    "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. 
  • VioletFennVioletFenn Posts: 124Member Pioneering
    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
  • joannarashellejoannarashelle Posts: 135Member Pioneering
    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

  • DianaWDianaW Posts: 30Member Connected
    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.
  • Dwayne1961Dwayne1961 Posts: 6Member Connected
    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) 

  • tmd63tmd63 Posts: 2Member Listener
    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.
  • joannarashellejoannarashelle Posts: 135Member Pioneering
    @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 

  • tmd63tmd63 Posts: 2Member Listener
    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.
  • joannarashellejoannarashelle Posts: 135Member Pioneering
    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...!
  • DianaWDianaW Posts: 30Member Connected
    But not all the people on this planet, surely, @joannarashelle ? Perhaps too many of those whom one only encounters in passing, and there are always the nasty ones whom one can't always manage or (if necessary) avoid. There must be at least some - more than a few, I hope - who make life better for each of us at times, if not continually.
  • joannarashellejoannarashelle Posts: 135Member Pioneering
    Hello @DianaW no not all people
  • joannarashellejoannarashelle Posts: 135Member Pioneering
    Lots on here I have an afiinity towards!

    But humans as a species are baffling to me
  • DianaWDianaW Posts: 30Member Connected
    I find that life works out much better if I concentrate on the people etc that I need to work with. Better to ignore (as far as possible) the worse possibilities that may be out there than let worrying about them get in the way of the immediate issues. (Much easier said than done nowadays, with a dangerous narcissist in the White House - but that's another matter and much better left in the background.)

    It's rather like watching the pennies and letting the pounds look after themselves, which is always good advice!
  • joannarashellejoannarashelle Posts: 135Member Pioneering
    Hello @DianaW!

    Wise words indeed but not always easy for those with Autism
  • lonewarriorlonewarrior Posts: 23Member Connected
    I haven't been diagnosed, But having suffered so much at school and having to battle the school my daughter attended to get her help which never came I tried to find out what the issues might be. I came to the conclusion it might be dyslexia.or at least in the spectrum of it. We gave her the help she needed to get her to college, they decided to test her for dyslexia and a report came back stating she was indeed dyslexic but had managed to progress much further than she should have? The report author praised us as parents for getting her to her current level. My daughter is now training as a teacher,she has always volunteered for work with disadvantaged children.she can spot the child who needs that extra help. She often posts links to my Facebook timeline to do with dyslexia,autism and other learning areas. I clicked on the post from violetfenn and here I am. As for how I feel about maybe being ASD? I feel as I did when realising I may be dyslexic, relieved and happy,sad,angry and finally at peace that I am not crazy or alone in how I see the world.brian
  • DianaWDianaW Posts: 30Member Connected
    Hello @DianaW!

    Wise words indeed but not always easy for those with Autism
    That's an interesting comment. How does autism affect one's capacity to adopt someone else's basic philosophies, such as this one, please?
  • joannarashellejoannarashelle Posts: 135Member Pioneering
    Hello @DianaW
    Maybe One doesn't want to adopt someone else's philosophies maybe One enjoys having their own? 
    I suggest you read up on autism either online or in a library, it will help you 


    Best wishes 
  • DianaWDianaW Posts: 30Member Connected
    I wasn't suggesting it other than as a potentially helpful strategy, in view of your comment about finding humans baffling as a species.

    I have read what I can find on autism but your comment suggested a depth of understanding that isn't evident in general texts; hence the question. Sorry if that didn't get through clearly.
  • joannarashellejoannarashelle Posts: 135Member Pioneering
    @DianaW,

    I suspect this specific forum is for support advice compassion and practical help for people with ASD and also their family members and partners. 

     Anyone who posts on here will have a better understanding of autism than in texts, we're living it baby!! For real!!! 

  • pdlglosukpdlglosuk Posts: 1Member Listener
    Hi Violet, So good of you to share your story.  I was diagnosed as having Asperger Syndrome in 1994 following some stressful situations I encountered both in and out of work in the early 1990s.  I was 26 when I was diagnosed and I feel that my current employers are a lot more understanding than some of my previous employers.  I have worked at various Tesco stores since 1995 and have received a lot of support from various organisations such as Gloucestershire Group Homes (a specialist unit for people with AS), Shaw Trust, Pluss and Remploy.  Hope that now you have had your diagnosis that people will be more understanding towards you too.  Such a shame it took so long for you as I feel it makes a huge difference being diagnosed.
  • DianaWDianaW Posts: 30Member Connected
    @DianaW,

    I suspect this specific forum is for support advice compassion and practical help for people with ASD and also their family members and partners. 

     Anyone who posts on here will have a better understanding of autism than in texts, we're living it baby!! For real!!! 

    So it's an exclusive club for those with ASD, in your opinion? How does that help other people to be more understanding about the differences between them and those with ASD, or society to adapt to accommodating those differences more appropriately?

    We all live in a very mixed society and each of us probably knows people who differ from them in this respect, as well as in others. That's why I originally looked at this discussion, after all: I have a very old friend who's unwittingly on the ASD spectrum and have encountered various others over the years. Surely it would only be beneficial if this forum were as inclusive as possible?
  • joannarashellejoannarashelle Posts: 135Member Pioneering
    Good morning @DianaW how are you,
    I think you've lost the point of this thread

    its for people such as myself to share their experiences with present and past diagnosis of ASD and to help and possibly inform empower and help each other, in a 'safe' place.
    For assistance and understanding in what can be a complex condition to live with.

    I suggest you address your questions to the Scope advisors?

    They're here to help you and people like you 

    I am not all knowing but hope I've helped you in some way!

    Best of luck 

    xxx
  • DianaWDianaW Posts: 30Member Connected
    I haven't lost the point of the recent part of this thread at all - but you evidently don't think my point of view worth considering.
    The more exclusive the forum is about who can join in, the less it will help us all to communicate effectively with one another, whether or not we are actually on the ASD spectrum. I hope that's not what Scope had in mind when it began the discussion and invited all Scope members to consider taking part in it.
  • Chris_ScopeChris_Scope Posts: 695Member Pioneering
    Hi Diana, welcome to the community. Everyone is welcome here and we encourage people of all experiences and viewpoints. This thread is however focused on diagnoses of ASD, and we do have many other categories for discussion on other topics related to disability, which you can find here. While everyone is welcome to take part in all discussions across the forum, we have also tried to create spaces where specific situations and conditions can be discussed. Hope this helps, you can also view our community guidelines here.
  • Sam_ScopeSam_Scope Posts: 7,653Administrator Scope community team
    Hi @DianaW I think this post is wonderful for sparking debate! As with any debate around a person's impairment or disability, it is important to be sensitive and to listen to the perspectives and experiences of the people who have that diagnosis themselves. 

    What is your question? I am sure there are members to give you their experiences.

    Is it this? 
    "I find that life works out much better if I concentrate on the people etc that I need to work with. Better to ignore (as far as possible) the worse possibilities that may be out there than let worrying about them get in the way of the immediate issues."

    @joannarashelle replied "Wise words indeed but not always easy for those with Autism"

    And you said 
    "How does autism affect one's capacity to adopt someone else's basic philosophies, such as this one, please?"
    Scope
    Senior online community officer
  • DianaWDianaW Posts: 30Member Connected
    Yes, that's the essence of it, Sam. It began and proceeded a little earlier and later on, though, running from joannarashelle's comment about "humans as a species are baffling to me" and continuing to her "Maybe One doesn't want to adopt someone else's philosophies maybe One enjoys having heir own?"
    That was where the exchange potentially became so interesting, because each of us seemingly found the other's reaction inexplicable.

    Could you possibly copy the whole exchange over to the new thread, where someone has just asked me to recap how the idea for that emerged. I don't think that I can do this unaided - sorry! Thanks....
  • Chris_ScopeChris_Scope Posts: 695Member Pioneering
    Katy on Facebook says:

    "I was diagnosed at the age of 31 in 2015 as having Asperger's/ASD. This is after being referred when I was 22, seeing a psychologist when I was 23, then hearing nothing until I was 25 and got told I could have a social worker. Only problem with that was that this came when I'd moved to Wales for Uni!

    I then saw a psychologist in Wales during my final year for assessment. She did the children's assessment, then told me that I was wasting her time. I think she said this because I was: a) female, b) engaged (now married), and c) reading Psychology! This is despite my dissertation supervisor - an expert in ASD - saying that if she was a clinician, she would diagnose me then and there as autistic.

    Once I'd graduated, I moved back to Yorkshire, where I summoned the courage to ask for another assessment. This time, it was done properly - DISCO method used, Mum interviewed about what I was like as a child, the works. Three hours later, I had an official diagnosis.

    Trouble is, there's very little help out there for adults on the spectrum. Most of the help seems to be for kids."
  • Chris_ScopeChris_Scope Posts: 695Member Pioneering
    Another comment from Facebook, this one from Sarah:
    "I was diagnosed aged 20 after many years fighting to be assessed. I've been told Autism is more unheard of in women than it is men. I think an effort should be made to spread awareness for both male and female autism as a whole because i think it affects men and women in different ways but i may be wrong. 

    I find society can be very harsh on people with autism and I've found when I say I have Autism the response i get is "but you don't look like you do" or another favourite is "you appear so confident though" social interaction with people is incredibly difficult for me, I can only communicate best with animals or children to my surprise. 

    I hope to study Inclusive Education and Disability Studies at university next year and I hope that I can bring my own experiences into mt studies and in my future career."
  • Chris_ScopeChris_Scope Posts: 695Member Pioneering
    This one from Simon on Facebook:

    "Got my dx at 44, then my life made sense. I knew from the age of 7 I was different, all the classic signs of autism, but no one knew back then. 
    I stumbled through life questioning everything, I didn't understand social cues etc etc

    I was labelled the black sheep of the family, always misunderstood everything was hard work, I just thought this is how it is for everyone, isn't it? 

    Then I thought I was going mad and maybe it was all my fault? Then the depression came, that big black cloud that hangs over you refusing to move. 

    Then my dx, relief I wasn't going mad , there were reasons I did things a certain way , reasons why I don't understand social cues, and I hate bright light! It hurts! I thought it did for everyone..

    So many things made sense now. I'm happy now, off my meds life is really good. 

    I'm autistic and proud it gives me an outlook on life that many people just don't get to see. I don't just think outside the box,there is no box."
  • Chris_ScopeChris_Scope Posts: 695Member Pioneering
    And another, from Debra on Facebook:

    "Same here. Same age diagnosis.
    A month off 47 to be exact. Brought up my daughter 26, who was very obvious early diagnosed severe ASD and nobody picked up that I was also on the spectrum because I didn't ever in my life cause problems. 
    I was very quiet, stuck to all the rules, and also very bright at school despite missing loads to illness and surgery as I am also severe end EDS. (connective tissue disorder) 
    I trained as a nurse, I've been a gifted fine art artist (all tiny brush every detail), also a singer online, (and mod winning violin player as a child) though health is dire through no fault of my own. I was a prolific letter writer and poetry writer and all covered in detailed artwork, the same with my school jotters!!
    My "thing" was knowing who every car that passed belonged to, (even in the dark) and I could recite every car they'd ever possessed's numberplates!! ..I still would but for stroke issues!
    I've always been on my own, and find males easier as friends. I don't "get" the girlie hanging out.
    I prefer animals. :)
    I have a very long lasting marriage; been together since I was 17 and he was 18. I am going paralysed now and have tearing main brain arteries due to the EDS, prognosis is poor but the last two years diagnosed, has made me understand "why".
    It was my hubby who worked it all out and pushed me to look for diagnosis.

    This is typical of where I would put my story.. on the side, on someone else's post haha!!"

  • Chris_ScopeChris_Scope Posts: 695Member Pioneering
    And Lesley:

    "I can definitely relate to this. I got my diagnosis last year when I was 46 too. I ended up paying for a private appointment when my GP flatly refused to consider autism or that I needed a diagnosis for my own sanity. My main difficulty now is convincing people that their perception of autism is not very accurate and yes, it is possible for a 46 year old woman to be autistic, despite being way to good at coping, copying and masking for most of my life."


  • Chris_ScopeChris_Scope Posts: 695Member Pioneering
    From Marie on Facebook: 

    "Just half way through my assessment at 44! Passed the paper side with flying colours. Luckily I'd saved some of my old school reports that back up what I've said.

    I've never been able to achieve my full potential as anxiety kicks in and I fret too much. I'm always worried about what people think of me and I really struggle to understand what's going on in conversations half the time. I'm so easily distracted and have lots of little rituals and OCDs .

     I was always the loner; the quirky one at school (nickname was freak and weirdo) . I never felt I fit in .never understood the concept of fashion so constantly had the mick taken out of me. So I tried really hard to fit in and went the other way. The school report saying I'm a very quiet girl is the opposite to what i present myself as today. I talk non stop as I struggle with cues and don't know when I should shut up. I often get carried away and talk over people and struggle to understand their annoyance sometimes; tho I'm better at it these days ! It's amazing what you can teach yourself to try to fit in.

    My friends often joke they know I'm aspie and my sons consultant put the idea in my head after we spoke (my son's autistic with ADHD SPD and Tourette's ). So I've decided to find out if I am. My mum says we all know you're different so a diagnosis won't change that but she doesn't understand how much it means to know there is a reason to your different! To know why I've struggled all my life to fit in ; how using all my energy to come across as "normal" is exhausting and wears me out. How i can't help being pedantic. But all the professionals I work with , from my sons social worker to his clinical psych have always told me they are amazed at the bond I have with my son and they've never met a better advocate. But it's because I get it. I can completely see why my son gets upset and pre empt him half the time because I did the same things as a child!

    I feel girls on the spectrum are very good maskers and I don't want to keep hiding who I really am anymore!"
  • joannarashellejoannarashelle Posts: 135Member Pioneering
    Thankyou @Chris_Scope for giving us all these examples, I'll be reading through them tonight.


    Thankyou 
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