UK: Effects of official adult diagnosis?

Backstory: I've known I have Aspergers since I was a teenager. I'm now 28. Early self "diagnosis" and a deep introspection of my flaws and how they relate to classic aspergers symptoms. Since then, two doctors and one therapist have suggest in passing, that it was very likely i have aspergers or some form of "mild" autism, due to my mannerism, behaviour, triggers, etc. I've also had multiple friends who have been close enough to talk to me about it, ask me if I was.

I've never been officially diagnosed, because in my mind, what difference does it make. I'm certain of who I am, and I function for the most part, very well apart from in certain social circumstances or with some relationships, and what is getting an official diagnosis going to change about either of those things. I work through what I have to deal with and who I am and that's that. At this point I wear it on my sleeve pretty openly and i'm not shy about discussing it if people want to. 

What I'm wondering though, is what effect would an actual official diagnosis have on my life? If I sat down with a doctor and...Presumably, took some tests? And ended up with that showing on my medical record.

Would it have any disadvantages? Being precluded from certain occupations in future because of it? Or anything where people with mental health issues may have to declare those? Would it possibly affect any future health care, insurance, etc?

On the flip side, would it have any advantages? Without being crass, would it help to give me a "safety net" in certain situations, professional for example, where I could lean on an official diagnosis to excuse something or rather, help put my behaviour into context? Would I qualify for any kind of social help, free bus pass, etc, anything like that? Could it help me should i (god forbid) have any legal troubles in future? If I'm going to have this...whatever you would call it. Condition. I might as well benefit from any help I can receive as a side effect of that.

I have a full time job with a salary that pays well, and a decent career path, and just recently I've been thinking about it more and more. I happily tell people that I am, I KNOW that I am, but what if somebody ever calls me out and wants "proof". What if they say "have you been officially diagnosed. is it on your medical record?", i'm not going to lie about that. Perhaps people will think I'm just attention seeking or self diagnosing to excuse poor social skills?

Give me your thoughts. I already understand who I am and the issues I face and I know what the medical term is for it, but would that being on my medical records, really have any actual real world effect, above and beyond me just saying that I am.

  • Hi Kaixeka,

    You'll find many, many threads on here dealing with the same subject.  Many people ask the same question (check the 'Related' column on the right).

    I'll give you my own story.  I was finally diagnosed (at my own instigation) 3 years ago, at the age of 56.  Before that, I'd self-diagnosed for about 2 years.  In my own mind, I had no doubt about my condition.  But I wanted validation.  I wanted that moment - which I got - when I could hold my official diagnosis in my hand and finally see my whole life in its proper context.  I've mentioned before how it felt like I'd had a Turing machine running in my head for decades, and suddenly all the tumblers fell into place and the code was broken.

    At my age, I wasn't especially bothered about what impact my diagnosis might have on any future career path, or emigration plans, or anything else.  The one other really positive thing it's brought me, though - aside from that validation - is the ability to negotiate things better in my own behalf.  With my employers, for instance.  No longer can I be labelled fastidious, sensitive, incompetent, inflexible, etc.  I have a condition, and I can expect that to be taken account of.  As it is.  I also, if I so choose (which I don't) can claim access to support services if I need them.  Also, if I'm ill, I no longer need to rely on the old 'excuses' (as they felt to me) of depression, anxiety disorder, SAD, and so forth.  Actually, following my diagnosis, my mental health has improved.  Because now I understand the root of it all.

    I understand your reservations.  Regarding your preclusion from certain careers, all I can say is - would you sooner take a chance with a career (no matter how much you might want it) that might lead you into problems further along the line?  Supposing, for instance, you had a heart condition - but didn't disclose it because you wanted to join the Marines.  It's unlikely that such a situation would occur.  But, of course, many people with undiagnosed health conditions have come unstuck with the rigorous training programme the Marines have to undertake.

    These are my thoughts, anyway.  Again, I understand where you're coming from with your reservations.  It's a lot to take into account.

    I'm pretty sure you'll soon get some other insights from the fine folk here!

    All the best,

    Tom

  • Hi Kaixeka,

    Thanks for your post - and I also value the reply from Former Member

    I'm a 46 year old male and waiting a diagnosis - I have had the tests last week.  My situation is different - but here is why I would value a diagnosis...

    From my own perspective, I NEVER knew I may have ASD/Asperegers until 6 months ago - or whatever it may/may not be. But throughout my adult life I have struggled with anxiety and social stress. I have paid privately to see several stress councellors (did not want it on my medical records for all sorts of reasons). Those councellors did, with hindsight and to be fair to them, ask the leading questions, but it would appear I had not self-analysed enough at that point to be able to truthfully answer them (eg I denied any problem with physical contact). I wasn't lying I don't think, I was just hiding the truth, from the world and myself. So...the concellors gave me incorrect (and expensive) advise, blaming it on non existent childhood trauma, a lack of work/life balance. I tried their recommendations - nothing worked - so I kinda gave up...carried on...

    A diagnosis would explain to me - after DECADES of suffering with stress, social anxiety, people phobias etc that the stressors may be very different to what I have thought them to be all my life? I've always blamed my very busy career, the big responsibilities I had. Now with some self-analysis and guidance, some of it is as simple as - trigger noises, new places, the exhaustion of social contact? The diagnosis may help me take a different path to stress and anxiety reduction? Not sure what that will be yet - I'll need to talk with the assessors.  For the first time in my life I may be able to UNDERSTAND why I am like I am. I will really value that. Maybe at my age I need that piece of paper as proof - I've been very capable at learning to cope to a degree and hiding stuff up until now.  An official diagnosis will give me answers.

    The other "biggie" for me from an official diagnosis is an explanation to my nearest and dearest about why I appear so RUDE, I avoid family and social situations, don't turn up to weddings, or leave half way through, refuse holiday invites, avoid/dislike their noisy children, sit in my hotel room alone when I could not find the excuse not to go to some hell hole of a theme park. Diagnosis will give me the ability to explain to them it's a condition and I might be able to go with some limitations - as opposed to I'm just an ******?

    At my stage in life I think for me it would be less convincing if I announce one day - I think I may have "xxx" - without some medical assessment and opinion to back that up?  I have told a few people - none of them believe it at first - my social masking has worked well!

    The negatives - I told one colleague in confidence. His sneering, disbelieving response gave me forewarning that I may not want to share this too widely. I've told my GP I'm being tested - I may or may not take medication my assessor has advised may be useful to cope with the stress & anxiety. I'm self employed - so luckily have an understanding boss!!

    It will impact future career / contract choices.  I may or may not declare to future employers, I may refuse certain contracts - depends if I feel I can do 100% of any role without showing my old responses?  If I need dispensations I may ask if I can take them???

    I think I consider you "lucky" Kaixeka to understand your diagnosis earlier in life, and I understand why that piece of paper may hold less value for you.  Having it on your medical records may negatively impact life insurance (I dont know that for sure - but I do know that stress/depression on medical records has some bearing).  It may also get you access to services - should you need them at a later stage in your life?

    Good luck with the decision! All the best. Mark.

  • Hello Kaixeka,

    About twenty years ago I read a newspaper article about people who have something called synaesthesia. This was a revelation to me, I have always been able to see music and most sounds as colours and shapes. As a child I had learnt to keep quiet about it, but it was good to know that I wasn’t alone.

      

    Ten years after reading the article I googled synaesthesia and came across some people who are both synesthetes and autistic. After a lot of reading, I realised that I was probably on the spectrum. I didn’t do anything about my discovery as I only go to places like a doctor surgery unless I absolutely have to. I also wondered what difference a diagnosis would make.

    A further ten years on I found myself being pulled out my car - in a remote rural car park-

    by two police officers. The car had been slowly filling with exhaust fumes. The police said that luckily for me it was a quiet night for them, so they had decided to check the countryside car parks. I was taken the local A&E.

    At the hospital I had my first contact with mental health services. I was informed that I would have to spend some time in a mental health hospital. If I did not agree to this I would be sectioned. Unfortunately the local hospital was full and I was taken to a hospital 2 hours away from home.

    At the mental health hospital a therapist went through the ASQ with me, and told me I scored quite highly. I then had a number of sessions with a psychiatrist who informed me that I am indeed autistic. After 25 days I was discharged. At a subsquent meeting with my local health team psychiatrist, the diagnosis was confirmed.

    I am telling you this because I think that if I had gone for a diagnosis earlier, when I first thought I was probably on the spectrum, I could have saved myself, my family and friends a lot of heartache. I would have been able to contact someone and got the help I needed.

    Everyone is different and I am not saying this is what will happen if you don’t get a diagnosis. When I was your age I would have never considered myself to be in danger of self harm (I am 61). However, I do feel that that the long, slow accretion of impairment due to the effort of masking and the discomfiture at social occasions, led me to the edge.

  • A really interesting thread - thanks for starting. I am a 52 year old female, happily married and working as a special needs teaching assistant, and have always suffered with mental health issues - the main being depression which i was first diagnosed with at the age of 18. I always felt people were against me, were inconsiderate and didnt't care. I also found that sometimes the slightest (to most people) thing would set me off either in a bad temper or tears. (Eg, we are going out and my husband tells me we need to take a detour to deliver something which means we wouldn't be arriving at the destination at the time I thought we would - or we may have to leave home earlier) I have always struggled with noisy environments - why can't people just be considerate and stay quiet - and I notice small sounds that others don't - what IS making that sound and how am I the only person bothered by it? Artificial smells make me feel ill - how is it acceptable to spray that perfume in the staffroom?- etc etc

    It was  my pastor who told me she thought I am autistic when I went to her very depressed to talk about my mental health. she said straight away she didn't think I had a 'mainstream' mental issue but realised within a week of knowing me that I am probably autistic.

    This conversation took place over a year ago and within a week of me pondering this and researching it was as if a lightbulb had come on. -

    so THAT'S why I failed school when I have an IQ of 142, THAT'S why everyone in inconsiderate (they aren't - they just don't understand me). THAT'S why I get so upset over little things (meltdowns!), THAT'S why my senses are so acute.

    My life has been so much easier since then. I understand myself, and others understand me better. I now don't need to avoid certain situations because I know my friends will understand when I stay for a while but then say 'I'm sorry, I've had enough now, I need to go'

    And my mental health has been so much better.

    I am now waiting for a private appointment for a full diagnostic assessment

  • Thank you really appreciate the comment! Yes - I'm not "upset" about the diagnosis - I do view it as a positive. It'll take some work to accomodate - but onwards and upwards! Good to hear of a postive contracting experience too. Maybe "politically" unwise at my current role but having the diagnosis will certainly help me be more selective and appropriate in future. Thanks again for your kind words.