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Hi a newbie here I've recently been told I have ASD

spankie76
spankie76 Member Posts: 30 Connected
Hi my name is actually spankie but I have fat thumbs🙄(don't know if I can change it now). I'm 44 and have recently been told I have asd( October 2020), not really sure how I feel about it all so thought I'd start talking too people. Sometimes I can see it but others I feel I'm not like what I hear and read about others with asd.
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Comments

  • Sandy_123
    Sandy_123 Member Posts: 1,985 Pioneering
    Hi @soankie76 welcome to the community  or should I say spankie, its a lot to take in when given a new diagnosis, there are lots of us to talk to here.
  • woodbine
    woodbine Community Co-Production Group Posts: 5,305 Disability Gamechanger
    @soankie76 hi spankie and welcome to scope, hope you are well this evening?
    I am a person with epilepsy not an epileptic, my illness doesn't define me.
  • spankie76
    spankie76 Member Posts: 30 Connected
    Thank you.
    I just want to understand it more. I hear about people being diagnosed in teens and twenties but not around my age, which then starts me thinking which leads to overthinking then I'll convince myself there can't be anything wrong with me. It would be nice to hear experiences of people who got diagnosed later in life 
  • janer1967
    janer1967 Member Posts: 12,290 Disability Gamechanger
    Hi and welcome to the community 

    Feel free to join in or ask any questions 
    Here to help with my experience in hunan resources and employment rights 
  • spankie76
    spankie76 Member Posts: 30 Connected
    Is there a usual procedure for being diagnosed like tests or is there normally a certain amount of appointments before they give a diagnosis? I'm only asking because I had two appointments and it was in the first appointments I was told they believe I have asd 
  • Sandy_123
    Sandy_123 Member Posts: 1,985 Pioneering
    Hi @soankie76 I wouldn't personally have a clue, might be better to ask your gp for further information.
  • Ross_Scope
    Ross_Scope Posts: 4,971

    Scope community team

    Hello @soankie76

    Welcome to the community, don't worry we all make typos :) If you want to change your username, we can do that for you. Is it "spankie" that you want it to be?

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  • spankie76
    spankie76 Member Posts: 30 Connected
    @Ross_Scope yes please "spankie76"
  • Ross_Scope
    Ross_Scope Posts: 4,971

    Scope community team

    spankie76 said:
    @Ross_Scope yes please "spankie76"
    Abracadabra! There you go, just like magic, it's changed :) 
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  • spankie76
    spankie76 Member Posts: 30 Connected
    Thank you😊 and before people ask it is my nickname and no its nothing dirty😅
  • Caz_Alumni
    Caz_Alumni Scope alumni Posts: 624 Pioneering
    edited May 7
    Welcome to the community @spankie76

    Great nickname! And, of course, it never even crossed my mind that it might be anything dirty ;)

    It's really good to have you with us. I know you've said that you wanted to join the community and chat to some other people about their experiences of ASD. In terms of some of the questions in your previous posts, have you had chance to look at these resources from the NHS? 'How to get diagnosed' and 'Newly diagnosed: things to help' are both online resources that might help, if you haven't already had a read of those? Plus, there's some links to the Healthtalk website on there as well, which has some videos of people telling their own stories of ASD.

    Also, I wondered if you might want to tell us a bit more about yourself in the process as well? That would be a really good way of introducing yourself to the community. And then we could also get to know you a bit better as well. :) 


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  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,929 Disability Gamechanger
    Welcome to the community @spankie76 i'm currently beginning the journey of finding out if I am on the spectrum, i'm 26. I've already been told how long the waiting for assessments can be,but there's been a part of me for a while now that is conivinced i'm on the spectrum. 
    Disability Gamechanger - 2019
  • spankie76
    spankie76 Member Posts: 30 Connected
    What would people like too know about me, I only ask that because people tell me I tend to give my life story when people ask that😅
  • Caz_Alumni
    Caz_Alumni Scope alumni Posts: 624 Pioneering
    That's no problem @spankie76! We're happy to hear your life story. If you're happy to tell us all about it?  :D

    Just start simple, maybe. And take it from there. You don't have to go into too much detail though. Whatever you feel comfortable chatting to us about.

    So, for example, I know you've said that you're not sure about how to feel about being told about your ASD. Do you want to tell us a bit more about why you don't feel like other people with ASD that you hear about and read about?

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  • spankie76
    spankie76 Member Posts: 30 Connected
    I cant explaine it its almost like I tell myself there's nothing wrong im just being daft, but when the gentleman from Sheffield explained it to me it made sense. Plus im reading one of Temple Grandin's books and I dont know if I had alot of the things she talks about as I cant really remember my childhood except for odd bit and pieces and what my parents have told me. It's all just a mess in my head at the moment.
  • spankie76
    spankie76 Member Posts: 30 Connected
    Just to clarify I've been seeing drs all my life on and off. It was my local mental health worker who originally said its a personality disorder but also referred me to Sheffield for ADHD but at the end of the meeting the gentleman said "I think you possibly have aspergers" dont know if any of that helps 
  • Jabbygirl
    Jabbygirl Member Posts: 1 Listener
    Hello Spankie
    My son who is 30 has just been assessed and diagnosed with ASD. He had an online assessment lasting about 4 hours with two different ladies (2 hours with each and a break in between) I was present. They then asked to see him face to face for a further assessment which was about an hour. Two weeks later he received the outcome. We are waiting for the full details of the assessment to arrive in the form of a written report. My son has always been ‘different’ he is intelligent and just appears very quiet and shy. I think because he is intelligent and well spoken his diagnose has come quite late in his life. He was very worried about the ASD outcome but has come to realise that it makes sense of a lot of things that have happened in his life. How he has struggled and the difficulties he has had with a lot of things. School work for one and then later on employment as well as relationships with people. He is one of the most caring and considerate people you could every meet. He is frequently misunderstood as he misinterprets other people’s body language and facial expressions. He is often totally overwhelmed by things going on around him. We are both now learning the best way of helping him. I wish you all the very best as you learn about yourself and ASD. 
  • spankie76
    spankie76 Member Posts: 30 Connected
    @Jabbygirl thank you for that it ment alot hearing that, in fact it made me cry (in a good way) because it was the sort of thing my mum would of said. The only difference was I was a ball of energy lol and regressed into my own bubble as I got older. 

    You son is lucky and I can tell how much you care just from the way you write about him.

    I wish you and your son all the best for the future.
  • Geoark
    Geoark Member, Scope Volunteer Posts: 1,375 Disability Gamechanger
    Hi @spankie76 and welcome to the community.

    Something to remember is once you have met someone with Aspergers that is what you have done, met one person. It is a wide spectrum and as with everything else people are very different from each other. Another is that it does not change who you are, it can help you to understand yourself better, and put a new perspective on things that may have happened in your life.

    My daughter and her cousins from my side of the family have all been diagnosed with Aspergers and they are each very different with their own personalities. When I was learning about it after being told that would likely be her diagnosis what struck me was a lot of things I was reading seemed to relate more to my own experiences than my daughter. But as I continued learning about it I found out that girls present differently, probably the reason why it is often not picked up so quickly. 

    Things are very stressful at work at the moment and to be honest without understanding why I feel the way I do I think I would have walked out in the last couple of weeks, although the option for redundancy by the end of June was an option. Instead I've applied for a couple of roles within the company and take it one day at a time. Fortunately I have a fantastic boss who totally understands me, and colleagues who are supporting me when I need it. Fortunately we are working from home still, as one of my habits is to scratch my scalp when I'm anxious or stressed out, so it is only my wife and daughter who mention the scratch marks. Sorry this is not sounding as positive as I meant it to be. Point being once things have been sorted out I will settle down and things will return to some form of normality, where as in the past I would have just moved on and dealt with the consequences.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • spankie76
    spankie76 Member Posts: 30 Connected
    @Geoark thank you for that alot of things are starting to make sense now, especially since talking to people on here. I full understand the walking away when things get too much, ive live in many places due to when things got too much just disappearing. And I know how the scratching thing feels, I have a habit of rubbing and scratching the palm of my right hand when I'm nervous or stressed.

    I hope the job goes OK and you find a role that suits your needs and makes you happy.
  • chiarieds
    chiarieds Community Co-Production Group Posts: 10,560 Disability Gamechanger
    Hi @spankie76 - Please, please don't think there's anything 'wrong' with you. We're all different, thank goodness; our diversity is what enriches us all. My son didn't get a diagnosis of Asperger's, tho he was said to be 'next door to it' some 14 years ago. He sees things differently, which I find makes him an extraordinary individual, whilst he often asks me to get to the point in our phone conversations on occasion, but that's part of who he is!
    My son also felt that the neuropsychologist he met twice was the best Dr he ever met, as he really understood him. To put this in perspective, we'd seen many specialists over about 6 years in trying to look into our family's genetic problems after which my son didn't really think much about Drs.
    We have had several members say they didn't get diagnosed until their 40s, 50s. or, even more recently, their early 60s. So, please know you're not alone, & you will find a lot of understanding here, as I believe you've already seen.
  • steveo928
    steveo928 Member Posts: 16 Connected
    Hi and welcome @spankie76

    I’m on the same journey as you. I was referred to my local mental health team earlier this year and had two appointments with them so far. 

    In the first assessment they advised they think I’m suffering with bi-polar or possibly borderline personality disorder. 

    During the second assessment the doctor asked “have you been screened for ASD? Because what you’ve told us so far tells me that you could be on the spectrum.” 

    They sent me an ASD questionnaire which I’ve done and sent back, and now I guess it’s just a waiting game. I’m told it could take up to 2 years to be seen. 

    I’m 33 and at first sat here thinking my life has been wasted thus far with hardships and no support but then on the other hand I’m grateful that I’m getting somewhere in understanding more about myself and difficulties I have. 

    I suppose after 30+ years a couple of extra years waiting can’t be that bad lol 

    Remember, we are all unique and different with or without a diagnosis. 

    I hope it all works out well :)

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