Have diagnosis... now what?

Hi, I'm Lucy, 43 years old, married and newly diagnosed with Aspergers. For the best part of my life I have struggled with social anxiety, depression and a whole list of mental health troubles, unable to find a career or a job that suited me and with which I felt comfortable. I have no 'friends' and find the whole idea of friendship to be hard work. I only went through the autism diagnostic process because it was suggested to me during a brief assessment appointment with a local mental health team, the pieces seemed to fit together for them, my symptoms plus a lack of success with medications and cognitive behavioural therapy made them wonder if I may have ASD. So here I am, with a diagnosis and a letter to prove it... but I'm at a loss to know what happens next? Will life improve or will I just carry on as I am with a name for my pain? Keen to hear other people's experiences of adult ASD diagnosis, especially Aspergers.

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  • Hi Lucy. I am sorry to hear that you have had so many problems in life and feel confused why the diagnosis has come so late. I was diagnosed at 33 - and thought that was late too. It is when you find a 10year old with a diagnosis and getting the support for her differences. On the other hand I met a gentleman who had a diagnosis at 80! So we should consider ourselves luckier than some!! Believe me there are a lot of us in the same boat. There is still very little in the way of understanding Asperger's,due to it being a spectrum condition and the fact that many people with the syndrome appear intelligent and knowledgeable; they are just classified as eccentric people or as people with quirky traits who just don't appear to follow the crowd! This is why you and me perhaps were just not noticed as having a problem. I have also struggled with jobs- never feeling comfortable in what I was doing, frequently suffering with social phobias and wondering why me? A lot of autistics have been found to be low on vitamin B and therefore the fatigue, depression, anxiety affect us more than the average- an acquaintance at the support group told me that! And it clicked- our brains are wired differently and therefore perhaps need more nutrients than the average. There is still little research out there into the workings of the autistic brain but I do recommend that you find out if you can be signposted to a support group/ social club for ASD sufferers to meet others on the spectrum. You will feel less isolated then! Also, it strikes me like you need counselling for your late uncovered diagnosis. It should be a councillor who is trained in dealing with clients with autism spectrum. I go to a group in West London which has been helpful- they might be able to suggest a councillor! :-) Good luck, let me know what you find out if you want to.....Juli

  • Hi Juli,

    Thanks for replying. Over the years I've been told I'm suffering from emotionally unstable borderline personality disorder, dysthymia, generalised anxiety disorder and all kinds of mild mental health problems. I have been on one drug after another and never found the thing that even began to ease my troubles. The things that did help, tranquillisers and sleeping tablets, were always short term therapies that wouldn't be continued through fear of addiction. I was often sent to CMHTs who would interview and then discharge me, it would seem that I was never severe enough for them to refer me on to other services. My family seems reluctant to believe the diagnosis I have, one person telling me outright that they thought it was wrong. But to me it makes sense.

    I'm due to see the Autism team next week for a post-diagnosis chat and I will pick their brains as to how I can go from here. Perhaps a little counselling would be good, although I have been horribly resistant to it in the past. I also would like to have some help in finding work, I had to leave my last post as I was having meltdowns about it constantly to the point where it was affecting my entire life.

    As for the vitamin thing, that's very interesting and I shall look into that.

  • I see this was a month ago... How are you getting on?

    I hope the peace of mind that can come with the right diagnosis is finding it's way to you.

    Sadly anxiety and frustration is a daily experience, my husband was diagnosed at age 43.. We are still Learners.

  • A month on and it still feels like a bumpy road, I've had a lot of self doubt and anxiety and actually wondered if perhaps the diagnosis is wrong. Not that I don't fit into the general criteria, just that my family have made me feel like I shouldn't have bothered seeking help.

    My anxiety attacks seem more logical now, as in that they always seem to be based around social interaction or facing new situations. Every day I discover things that fit into the diagnosis.

    I rely so heavily on my husband's understanding and support. I can be rotten to live with.

  • You know it really doesn't matter what anyone thinks.

    You are the one living this and your loving supportive husband is your biggest witness to your hurts, anxieties, upsets and frustrations and as long as you can get some support / help / strategies to help you cope.. you will benefit.

    Let your family rest.. they may never understand why a diagnosis is needed or how to help.. Accept their love and leave their opinions..

    Just focus on being comfortable as you. Autism is a condition.. It is real and if you fit the criteria, then get some help to work out the best coping strategies for you - to allow you to live better.

    Cheering you on x

  • Hi Lucy, my name is Sam, I am 50 and I got my formal diagnosis yesterday! Reading your post was like reading about my life. I have spent the last 24 hours feeling a mix of relief, confusion and anger. Relief that I can understand why I have found certain thing s a challenge, confusion, like you about what happens now and anger that I have got so far in my life suffering from depression and unhappiness without anyone helping me find out why. I am hoping that the local ASD centre can offer appropriate counselling to get off the dreaded anti depressants and I am hoping to stress less about the fact I don't want to go to a party! If you want we can chat and help each other. It is easier to talk to a tablet! Anyway. I understand exactly how you are feeling which is quite an rarity for spectrum people. I am hoping brighter days are ahead.

  • Hi Sam,

    Thanks for replying. I have to say that it's nice to hear from someone who is going through the exact same thing I am.

    Shortly after the official letter of diagnosis I tried to communicate what had happened to my family only to be met with either indifference or flat out denial, with one of them saying that I wasn't like 'any autistic person (they'd) ever met' and that they weren't sure how to react - "Should I be congratulating you?". This made me paranoid, thinking that perhaps they were suggesting that I had manipulated this situation or faked it somehow. Even thought I went through the assessment as a babe in the woods, not really knowing what to expect. Especially the ADOS test which I actually found draining and difficult to do. Anyway, I'm now thinking about what happens next for me, I am going to try and get some help and support in finding a suitable job which won't send me into a meltdown.

    Do you have a post-diagnosis appointment to go to? I had mine a week ago and was given an information pack to work through and received an additional written report as to my personal needs (my organisational skills, handling money and things such as this are dreadful and they've highlighted ways I can manage this) and additional support I can engage with, including an 'ASD activity group', who go on outings and such and can give me some social interaction without any pressure.

    I'd very much like to see how things go for you, I know that no two experiences are going to be the same but even so. And yes, typing is a much easier way of talking. I have to agree.

  • Hi, I am still breaking the news to my family but remember that women are much better at hiding any issues and learning behaviour to get themselves by in tricky situations. I know that no one knows some of the problems I have had and telling the psy hologist some of my thoughts feelings and events was the first time I had ever said some of them. So I guess our families are in the dark about much of what we have experienced. I do not have a close relationship with my family, so my mum when I mentioned I had done my initial assessment just nodded in a knowing way. My sister laughed and said there was no way I was autistic. Luckily my husband, who is the one reason I get through my life supports me unquestioningly and just calls me "his little geek" which is OK.

    I am yet to arrange a follow up but am hoping the counselling will be more productive than I have experienced so far. It will be that aspe t that will be of most use to me.

    What is your background and what do you do? I know work is hard and I have had several bites of the cherry in all areas of my life. The only part of the journey that was successful and happy for me was law school. It was all about remembering facts, so I was in my element as I have the memory of an elephant! Every other aspect has taken several attempts, drop outs, failures etc.to get anywhere.

    We have just got a puppy which daft as it sounds is really helping me as he is faithful but not expecting anything I can't handle. I am getting out walking him and he allows me to be me.

    What caused you to suspect and investigate whether you are ASD? There will be so many people out there who will remain undiagnosed. For me I hope I can find happiness and contentment in me being me and start to like myself more.

    Keep in touch and stay positive

    Sam ☺

  • Hiya,

    Having a husband who puts up with the way I think and act is a good thing, even so I can be a difficult cow and things really have to be done my way or they aren't done at all. Even making tea is a minefield and don't get me started on his approach to washing up and his illogical use of the draining board. I always have to re-do a lot of what he does and if he weren't so patient then it would be awful. He calls me his 'quirky girl' and tells me that he likes that I'm wired up differently from the rest of the world.

    As for my family, well, we are all a bit 'distant', in physical as well as emotional terms. My sister is fairly passive aggressive, she can sometimes be a little dismissive of my side of things and when I've opened up to her in the past she has immediately shut things down, stating that she couldn't be of any use and wouldn't say anything helpful. She has kids, so she is very focused on them, I suppose I find her attitude a bit spiky and I often can't do right for doing wrong. I cannot get my head around phoning people, it scares me more than anything, but I get into trouble for this and am not believed when I tell them how severe this aspect of things is for me.

    Background wise, as a family we never really had any 'friends', dad was insistent that 'family was everything' and we had no visitors at the house. Dad had nothing outside his wife and kids, he shunned all attempts from work colleagues to see him on a social level. I suspect my dad is also ASD, but frankly dad is a story unto himself and unless you have several years to listen it's best just to say that he is/was unusual and unique. Not always in a good way.

    I was well educated up to my GCSE's because I went to a very sheltered private school (got a part scholarship) but ended up in a six form college because my parents couldn't afford school anymore. Here I felt like I had been imprisoned and found everyone frustratingly slow, so I left before my exams and then left home, far too early, got my first job and was bullied horribly because I had no idea how to handle the world outside my closeted life.

    I struggled with what I thought was just plain old social anxiety from my teens, I used to get sick just thinking about interaction with others, I've been known to pass out in pub toilets because the noise and stress was all too much and turned to drinking to knock the sharp edges off of my feelings. I bonded with very few folk. found I couldn't find anything to say to anyone, I simply wasn't interested in them or what they thought. I couldn't make myself care at all. The one thing I did have was an obsession with a particular band which became all consuming, even getting engaged to one of them, which didn't end well.

    Honestly, I've been mostly drifting for years, long periods of unemployment and when I have worked it has been in awful customer service roles and as a doctor's receptionist (once at a methadone clinic). I've been homeless, lived in total dumps (one place had no roof, seriously) and was in an abusive relationship for some years with a junkie who drained the life out of me.

    My only real joy was returning to uni as a mature student and getting my English and art history degree (haven't used it but loved studying for it). I got married three and a half years ago and it provided me with some stability and security.

    I never even considered that I might have ASD until it was suggested to me by one of the many psychologists/counsellors/psychiatric nurses I've seen over the years. I was referred for a mental health assessment for the umpteenth time and was told that I seemed to have the classic symptoms of Asperger Syndrome. This was some years ago and my first referral to a diagnostic clinic was refused funding, it was only when I left London and moved to the sticks that I was referred again (after another mental health intervention) and got accepted.

    It makes you realised that all your life you've been blaming yourself for failing to be what everyone else is, when actually it isn't anything you are in control of.

    How about you? How did you get to this point?

  • Glad you have a good husband..

    Quirky is good x

  • Gosh this sounds so much like my partners sons life so far .... no social involvement from mum who suffers herself with depression, dad who spends his life at work .... no diagnosis and the only reason I think he needs one is if nothing else for his parents to actually start realizing he does need help...whether this be groups of similar individuals that he can share things with and who understand him .... right now I feel he lives in a protective bubble and at some point that bubble is most likely going to burst and he will go into a meltdown...

    its very sad to watch as an outsider looking in...but i have tried explaining to his dad with no joy...just buries his head in the sand :-(

  • Hi there,

    Obviously when I was little there was no talk of Autism or Aspergers, my parents weren't really that keen to take me to the doctor for anything. I used to get crippling migraines as a kid but they never took me to get any help for this, instead treating it themselves and hoping I'd grow out of it.

    My brother, who suffers a lot of the same symptoms as I am and who considers himself an undiagnosed 'Aspie', was taken to a see a counsellor for behavioural issues at school, he would freeze on the spot unable to move, and my parent's were told he had 'situational sadness'. He only went a couple of times as my dad was pretty overt in saying that things were to be his way or not at all... We were just told we were different to the others around us. We were never given the chance to understand why.

    I think that being given a firm diagnosis can be a blessing and a curse. Yes, the pain has a name, but you still have to deal with the fact that things will not really improve and you still have to form many of your own coping strategies. I hope your partner wakes up a little to what is happening with his son. Support and being told that you're differences can be celebrated is what he probably needs.

  • hiya and thanks for your reply, I agree diagnosis can be both a blessing and a curse, but I guess if your burying your head than diagnosis should make you sit up and do something, i may be wrong

    dont get me wrong im quite a tough love mum, but always made sure my boys were active, ate healthy, could talk to me or a close friend, had plenty of social interaction with family and friends and taught them all the basics, eating with knife and fork, close your mouth when eating, saying hello and goodbye to people, not interrupting conversation, kick and catch a ball, ride a bike, a scooter, and lots more..If at 11 your child cannot do these things i would be gravely concerned, infact would have been concerned a good few years ago if i am being honest

    we thought my son had ADHD` when he was 3 we pushed it and pushed it until he was checked and it turned out he was just hyperactive but I then went to see a private cranial osteopath andchanged his diet and to this day I still wont buy sugared drinks and stuff and hes 17 :-)

  • You would think that a getting a diagnosis for your child would be a call to action. I mean, if you get told your kid is Type 1 Diabetic then you would learn as much as you could about the condition to make sure that it is managed correctly to avoid complications and in order to keep the child concerned is well. I suppose that as it is largely an invisible condition, as in it can't be monitored and a change in diet won't improve matters then, if someone is determined to do so, it can be 'ignored' or marginalised as something unimportant.

    I have to say that since I've found out about what 'I am' the reaction from those around me has been fairly apathetic in that they have made no effort to really understand what ASD means to them in terms of my behaviour.

  • Women people are just ignorant and rude though ?

    The mind is always something that intrigues me and I always research everything and anything I learn about and think it's quite sad some people can't be bothered as that's why it comes down to

    Your right though and his son also has terrible diet he only eats 95% probably higher carbs a day, no meat, veg and one fruit and he's overweight

    Again I researched a lot on this and this can also be autistic trait I believe sensory problems, he gags on everything

    I got a self help video for him from a phsycologist I organised his son to watch on my laptop that was nearly 5 mths ago we have access for. Year andbecause. I'm not pushing it no one else mentions it

    So frustrating I just don't get it I seriously don't ... but this is causing an issue in our relationship now as I see my partner in a different light these days someone who's too wrapped up in work or whatever else than help his own child ..... doesn't sit right with me 😡

  • Hiya Loosefish,

    I've just been reading the post and noticed what you have written about your father. Do you know of the strong genetic link in Autism? A lot of people with autism have parents who are scientists, engineers or are technical in some other way. My son has an autism diagnosis and It's likely he gets it from me. I'm a research scientist and, although I have never been diagnosed, I'm pretty sure I would be there or thereabouts.

    His diagnosis has helped both him and me understand ourselves a little better so I hope it's starting to do the same for you.

  • Hello Nozmo,

    I have seen there is a probable genetic link and I have to say that my grandmother on my father's side also had very distinct 'autistic' behaviours and also had a number of learning difficulties. Being that she was born at a time before autism had been 'described' she was just seen as being (and I quote from her sisters) 'silly'. All this is with hindsight and the benefit of my own diagnosis, but at least one of my siblings show symptoms similar to mine and other close blood relatives too.

    My father has always seen his lack of social ability as an advantage, he, like me, finds it difficult to empathise with other people's feelings and situations, he says that he's not interested in other people because he really needs nothing more than his wife and kids in his life.

    I am quite alone in my own diagnosis, by which I mean that I am the only one who feels that knowing is better than not knowing. My family feel that I shouldn't have bothered to go through this process.

  • My family is riddled with "weirdness" come to think of it, especially my mother and brother (who I could write a book on). I'm not sure how my wife puts up with it half of the time.

    I think it's good that you have gone through with the diagnosis and I reckon it will help you out in the long run. I may even go down that route one day...

  • Hi I'm Keith. Diagnosed ADD at 49 years old. Waiting for further investigations as to being on the AS. My life is very similar to yours although not married. Gather we help ourselves from what I hear. Closure is what I want so I can move on and learn more coping skills.

  • Hi Keith, I think that the aftercare for ASD probably varies greatly from region to region and certainly as far as an adult diagnosis is concerned you're left to get your head around it all yourself for the larger part.

    To get my diagnosis I had 5-6 hours of talking to an assessor and then an ADOS test. After which I received my report back with the 'verdict' and was given an appointment where I was given a pack with useful information about books on the subject, where to find help and links to online material. There are also support groups and 'social' groups.

    But yes, you're right, in the end there seems to be an air of 'well, you've got to this age, so you must have coping mechanisms already in place', which, although true, doesn't mean you've been okay, I know that mostly I've just been forced to get along because life is like that and I've had no one to hold my hand through most of this.

    Stay in touch, it's handy to have others to talk to and to compare notes with.

  • Thank you for your kind reply and yes will keep in touch 🤕😉😀😂

  • It is late so will check in again tomorrow goodnight peeps 😴 Lol

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