Newbie, middle aged and newly diagnosed

Hi all, 

I have recently received a diagnosis at the grand age of 52. it's a game changer but at the moment i am feeling a bit sorry for myself. My life has been fraught with broken jobs and relationships, loneliness, not fitting in, anxiety, fear and suddenly vanishing friendships. at least i have some insight now but i can't undo the past and all the loss that went with it. How have others managed to reconcile the fact that life could have been so different if only you, family, friends, employers might have known? 

I live with my three dogs and have been off sick from my job for four months with the anxiety that I now know is driven by autism. I will not be returning to my job but i have to find a way of paying the mortgage, on my own but how? really I need to work for myself as I am just no good working with or for others. 

while i'm thinking aloud i would love to hear from others, particularly older autistic people and those diagnosed later in life. I would love to hear your stories and how diagnosis has changed life for you or how you have reevaluated life before diagnosis... 

so, Hi and thank you for having me here

silver

  • Hi again, Aww re the 3 dogs, yea they do give you a purpose when everything seems so awful don't they, I don't know what I would have done without mine. Yes I am in nursing but that is also a sore point for me at the moment and an ongoing saga. If you want to chat just PM me I'm not going to say too much on here.

  • Hi I'm 47 and I was diagnosed on 16 May this year. All my life I knew I was different and I punished myself for it, all the jobs I'd not stuck at, the friends I'd lost, the relationships that had nerver worked. I saw it all as my fault cos I was broken. I just couldn't see things the way others did and it alienated me. I've had a couple of breakdowns during the course of my life and the last one I had lead me to finding out I am autistic. At first I thought if only if known about this when I was younger, how much better my life could of been, then I read Neurotribes by Steve Silverman and it changed my out look. My mum was a little girl during the war and the book made me realise she was also autistic, left handed and forced to wrote with her right hand for fear of being feeble minded. Then when she had me she used some of the ABA techniques on me, making me sit for hours in front of food I didn't want to eat, restraining me physically when I was having a "tantrum" (meltdown). Forcing me give eye contact or she would ignore me. It helped me realise that had it been known I was autistic, which sometimes I think she had an inkling, it could of been far worse for me in that they were still very stuck of getting the autism cured out of you. All those things she did damaged me further but it also could of been worse. Now I realise that when she called me Dolly daydreamer and calamity Jane that was all part of my autism. Now I see it that it's part of who I am and not something I need to get rid of. I allow myself to be the different thinker, the visually stimulated person. I allow myself to immerse myself in colour, lights, patterns, art, crafts, and the stims I've always had I don't surpress, not that I ever had control over my rocking. I let myself be me and I love myself for it. I wear head phones to block out the excessive noise and I wear sunglasses to hide my eyes and block out the excessive light. I play with putty and fidget toys when I need to concentrate. I feel myself becoming me again, like when I was off on my own as a child in what my mum called cloud cuckoo land, I was happy there. I'm still figuring out how I will earn money as my anxiety is off the charts, I think as we age we have less patients to mask for others, it tires us out more than when we were younger. But I won't be hiding it from any employer, if they can't deal with me being me then I don't belong there anyway. I see it as I'm paving the way for future generations to be able to be themselves. Sorry for the long reply, I don't usually have so much to say for myself but I felt that I had something in common with how you feel.Blue heart

  • Welcome, I hope you'll find new friends here. I was diagnosed at 45, F. after my daughter was diagnosed. I could have written much of your post, broken jobs, not fitting in, anxiety,  suddenly vanishing friendships... A lot of bullying and abusive dynamics at work..

    When my daughter was diagnosed, I did re-evaluate my life, it gave a name to the thing that was happening to me. It gave me a key to try to understand the mechanics and try to help myself with my difficulties, to reinterpret what I experienced. Before that I often was at the receiving end of  accusations of having this or that intentions or having 'done' this or that , which in fact I didn't do and didn't intend. :)  Sounds familiar?

    One of the things that were important to me early on was the definition of disability in the equality act: doing things differently, not in a deficient inferior way, but differently and needing and in fact having a right of this difference being accepted and accommodated. This really shaped my concept of autism and helped me to cope with the educational saga of my children. Having two children on the spectrum and being a SAHM, autism plays huge role in my life. Another thing I learned more recently is the double empathy problem. It does explain a lot of the issues for me.

    Having been on this forum I've read a lot of accounts of what happens in employment. Unfortunately it doesn't sound like employers knowing about autism helps a lot. I was pushed out in quite traumatic way a few times specifically after disclosing.  Too often that helps them to manage you out :(. I also came across accounts of families and friends jumping on the bandwagon of ableism, because there is no proper support for families and relationships and hate groups have hijacked this territory.

    I think autistic people are at their best continuing functioning in their autistic way doing what they are good at and sharing knowledge and supporting each other. 

  • I was diagnosed at 38. Totally out of the blue. I'd been under MH services for 3 years with a long bout of anxiety and depression. One day my GP told me he suspected I had autism. MH services never payed any attention, just threw meds at me. Within three months of the AQ test I was diagnosed as autistic. I didn't know much about autism at the time, just had a couple of friends with autistic kids. I knew how to treat them, and behave around them, not much else though.

    I can relate to a lot of the things you are speaking of.Leaving jobs or losing them, certain relationships failing, periods of locking myself away, and yeah, not much peace in general during my adult life.

    At first I had so much to take on board. For years I thought the sensory stuff was a form of insanity. I struggle with my senses a lot. I was questioning everything in my past, but it started to spill over into my everyday life. That wasn't good, at all. Second guessing myself all the time. Slowly things started to settle, and I started to realise that I was still me. All that had changed was that I had now a sort of way to manage things better. The lady that gave me my diagnosis signposted me to a local autism charity, who put me in touch with a lady who's sort of been a guardian angel the last few years. She also got me into contact with a lady who had been diagnosed 10 years ago, who she said had a lot in common with me. She did luckily and has given me good advice. I was lucky admittedly to find them. Things started to make a lot more sense. The lady who has been diagnosed 10 years said "What has changed about you? Nothing. There's nothing to second guess!". I didn't mind being diagnosed, not one bit, but it was all the "What if I knew earlier?" stuff that was throwing me.

    Around the same time I started posting here and got into a conversation with someone in PM. I always quote what she said because it made so much sense. "I have autism, autism doesn't have me" was what she said about the post-diagnosis feelings. I'll always owe her for telling me that short but sweet way of seeing it.

    Look at the things that apply to you, and what doesn't. Autism is a spectrum after all, it's different for all of us. There are good things about it, so appreciate those. With the stuff you find troubles you, you now have a way to look at them and manage them. Autism can be managed, but you are on that path now!

    My life has improved vastly in the last three years. I've found out so much useful stuff that makes life easier. You can fall into that rut of the post-diagnosis stuff I mentioned, but try not to. Three years ago I thought that my sensory problems were going to drive me over the edge, but now I know what they are and how to cope better.

    How have others managed to reconcile the fact that life could have been so different if only you, family, friends, employers might have known? 

    For me personally I had to stop thinking about it. I actually take pride in the fact I managed to do so much without a clue. You did too. It's something to be proud of. Stuff might have been painful, but you are where you are now. You were strong enough to get through that, so the only way is up now. The past is the past for me, and I'm just moving forward at a pace I can deal with. We will both get to where we need to be, we've just got to be kind to ourselves while we do it.

    All the best,

    Cloudy,

    Oh and welcome to the community!

  • Currently you have the luxury of having the time to seek help. As you imply your Union is not understanding. Start by speaking to somebody at the CAB. Print off a two transcripts of these posts including your own and give one to who ever you see asking for specialist advice. It will be a impersonal script for you to follow warts and all. As you do not seek face to face contact perhaps where you can interact according to what is being said.  From what you have written You will need advice on Benefits, You really should also seek the help of your GP, because unless he signs you unfit for work, you will face DWP interviews, for applicable benefits to your health and circumstances. Remember Winston Churchill's words, Never resign, they will have to sack you. It will be most important to get Credits for Your N.I. otherwise your Pension will suffer, whether you are out of work, or pay the contributions yourself if self employed, or just hiding in a shell where nobody can see you..

  • Hi, thank you for your concern. I have union involvement to help me with my current job situation but I will not be returning. I have done the job for five years and have been off sick with overwhelming anxiety and stress every year. they ailed to make reasonable adjustments each time. I need a new start but do need to pay my mortgage. unfortunately for me one of my difficulties is accessing organisations and support. I cannot ask for help, I have to sort things out myself. its a rigid fixed idea. I have a ridiculous fear of benefits and the job centre but nothing to stop me looking on line, thank you. 

  • Hi, thanks for the reply. may i ask what you do working for yourself? I am also relieved with the diagnosis but I am upset it is so late in life. How are you coping and learning as regards your recent diagnosis?

  • Hi, thanks for your concern. I have union involvement although i think they struggle to understand as much as my employers. My employers have failed to make reasonable adjustments ( I was long diagnosed with chronic anxiety which qualified as a disability years before I got the recent autism diagnosis.) now I am able to reflect with the knowledge of diagnosis and I am learning all the time about my triggers, the overwhelm and the incessant anxiety, i see i cannot continue in my role. I need a new start with less face to face contact as I really struggle but i don't intend to resign my post until all options have been explored. 

  • Hi Bookworm. thanks for your reply. I have three English setters, they are also my world. I would have reacted the same way having seen a reference to dogs. lol. I see we are also both nurses.. or at least i am still registered but desperate to do something else. 

  • Hi nice to meet you Bagpuss7

  • Just wanted to say hi and welcome. I was diagnosed at 46 am now 50 female. your post caught me as you mentioned the 'D' word dogs, I also have 3 2 whippets and a greyhound, they are my world and as far as I am concerned my main support. What sort of dogs do you have?

  • diagnosed a year ago, mid 40s, F

  • Hi, 

    My advice since you are thinking of quitting your employment - Is Firstly You MUST get some professional advice from Your Local Benefits advice shop, and separately from your local Citizens Advice Bureau.  

    You don't really need to have to work for yourself. If you had that sort of ambition or drive to work 18 hrs a day and most probably fail and lose everything you are 30 to 40 years too late. All this working for yourself is a pie in the sky effort by every Government to get You and others off Benefits and to increase the Job Statistics of people working. 1 or 2% may make a go of it with help of others like family working and getting no pay and resenting it. Have a look at your local corner shop, it is a different work ethic to being employed, you will see children doing jobs. they start young.

    If you want to work at anything Have it as a Hobby. and enjoy it. I speak of one who has always carried the torch for self employment. starting with hauling wood out of Bombed buildings and try to sell bundles of Firewood for 3d old pennies at 7 possibly 8. 

    You make enemies if you start to succeed - Take my word for it. This can lead to becoming very ill. 

    Get some advice before you leave your employment, While you are ill this should be the last thing you should do, It will affect whatever benefits you get, because you did this voluntarily. 

    If you have membership of a Trades Union get their advice,  

    You Need ADVICE and Help and Guidance, especially if your employer wants to sack you, because you are ill.

    Good luck.   

  • Hi there. I was diagnosed 2 weeks ago at 45. Fortunately I already worked out some time ago that I like working by myself so I have a job working from home. Look for a job that works for you, and ideally in an area that you enjoy. If you can find a role that you enjoy, you will do well at it. Keep looking. For me the diagnosis was a big relief that explained why I suffered with things. Now I don't need to worry about why. I only need to manage things to work for me now. Look to the future and do not dwell on the past. There isn't a great deal you can do about the past, until we invent time travel, but there is everything you can do about the future. Focus on that, and good luck.

  • Hi Silver

    I'm not autistic but have a daughter that is.

    It's not the end of the world and you've come this far in life. I'm so sorry you sound very upset and fed up about the whole situation. It must be very difficult.

    Financially paying the mortgage might have to come from initiative as you suggested, working on your own.

    but you must have had skills to get you this far in life so I'm sure you still got some tanacity and  skills somewhere.

    Get on the internet and get searching for organisations that can help you.I know that the Jobcentre gives you extra help if you're autistic and I think there's a scheme that can help you back into employment or self-employment. Maybe you could have a look at this.

    I'm sure you'll get lots of help on here.

    Take Care.