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Guest post: Getting an ASD diagnosis at 46

VioletFenn
VioletFenn Member Posts: 124 Pioneering

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. 

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Comments

  • MDonoghue
    MDonoghue Member Posts: 11 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_Alumni
    Sam_Alumni Scope alumni Posts: 7,674 Disability Gamechanger
    @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_Alumni
    Sam_Alumni Scope alumni Posts: 7,674 Disability Gamechanger
    @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_Alumni
    Sam_Alumni Scope alumni Posts: 7,674 Disability Gamechanger
    @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_Alumni
    Sam_Alumni Scope alumni Posts: 7,674 Disability Gamechanger
    @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
  • joannarashelle
    joannarashelle Member Posts: 135 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
  • Mand1001
    Mand1001 Member Posts: 2 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.
  • joannarashelle
    joannarashelle Member Posts: 135 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
  • Mand1001
    Mand1001 Member Posts: 2 Listener
    @joannarashelle thanks, yes just knowing I'm not alone makes a big difference, it's nice to have people who understand  :)
  • joannarashelle
    joannarashelle Member Posts: 135 Pioneering
    edited February 2017
  • cass
    cass Member Posts: 1 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! 
  • VioletFenn
    VioletFenn Member Posts: 124 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_Alumni
    Sam_Alumni Scope alumni Posts: 7,674 Disability Gamechanger
    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
  • lovesColdplay
    lovesColdplay Member Posts: 15 Connected
    Best wishes :-)
  • MDonoghue
    MDonoghue Member Posts: 11 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.

  • sandra123a
    sandra123a Member Posts: 8 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
  • MrsLogic
    MrsLogic Member Posts: 42 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

    Jo, aka 'Mrs Logic'
    <a rel="nofollow" target="_blank" href="http://faspie.blogspot.co.uk/">http://faspie.blogspot.co.uk/</a>

  • sandra123a
    sandra123a Member Posts: 8 Listener
    hi violet dont anydiffernet body else like had austim all my life very young tener age 2
  • piccolo8va
    piccolo8va Member Posts: 1 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! 
  • joannarashelle
    joannarashelle Member Posts: 135 Pioneering

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