Do you generally think a diagnosis was a positive thing?

Well here goes, I've never posted on a forum before but am curious to know what people think on this subject ....

I am a 46 year old woman, I guess most people would say functioning quite well in life (decent job, nice partner) but I have a lot of oddities that I have never really put together and it was only really my mum saying "I reckon your grandad was probably autistic" and " you're a lot like him" that made me start thinking .... then some research online and well, there's a lot

- as a kid, didn't like playing with other kids and found being sent to go and play with the other (unknown) children excruciating

- as a kid, obsessive interests, about which I had to know everything. Age 5 it was dinosaurs, age 7 volcanoes. Could have told you the name and location of every active one on the planet

- 2 friends throughout school and not much interest in adding to that, very happy with my own company

- teenage on, feeling like I didn't know how to be a girl properly (still don't). I can copy what others do but my heart is not in it. Always thought it was a gender thing, not being a girly girl, but wonder if it's more than that. My worst nightmare would be having to go on a hen night with 12 giggling girls and try to pretend I knew how to behave. 

- I work in IT, I am a coder and a good one. Due to my choice of work, I have worked with several autistic people. Some of them make more sense to me than the other people. Other people don't seem to get them but I do

- And I will rush through the rest, as I am rambling on ..... pathological fear of using the telephone (can't see the person, how am I supposed to know what is going on, resulting in very disjointed and uncomfortable calls), sensitive to loud noise, terrible problems with face blindness (if I saw my neighbour out of context, there's less than 50% chance I would recognise, and if clothing or hair style has changed, less than that), I struggle in large groups, can't focus when everyone is talking at once, prefer to not be around people much, I am a pattern-spotter, photographic memory for numbers, often told I am tactless and say the wrong thing .... then on the other hand I hold down a demanding job, have a good relationship with my lovely man and have still 2 very dear friends

The more I read the more I think my mum might be on to something, but on the other hand I don't know what having that confirmed (or not!) would achieve. Have any of you felt any benefit from having a diagnosis?

There are things that I struggle with, public transport being a big one. The train causes me an enormous amount of stress (too many people, noises, contact with people I don't know) taht I usually arrive at work freaked out/angry. I have had to get off a plane before it took off, because it all became too much and I completely freaked out.  Part of me wonders if I could explain (to myself and my boss) why that is, at least people would understand. Maybe?

It would be really interesting to hear others views on this. Have you bothered with a diagnosis? And if you did, did it make any difference?

thanks all

  • PS suspect my boss already knows actually. He asked me to come along to a "team day" even though I am a contractor. It was awful. I took against the guy doing the stupid cod psychology part and was probably rude to him. Then we had to go out in the evening and at least because it was really hot I could park myself in a chair because it was under the fan, but really it was so I didn't have to try to join in the everyone yelling at once thing that was going on. 

    The next day he came over to my desk, thanked me for coming and said "I hope it didn't upset you". That's the wrong words isn't it? He would've said I hope you weren't bored or something if it was anyone else. And yes I was upset I suppose. It was 8 hrs of having my nose rubbed in why I am not like them and never will be. Which normally doesn't bother me at all btw.

    So yeah, I think he knows.

  • Hello all and thanks so much  for the many different answers and perspectives. I still haven't made up my mind about formal diagnosis, but I am thinking that for my own peace of mind, I may well do it. I think it would help me to make some sense of stuff .... although you could say that is happening anyway since I worked this out for myself.

    To the folks who replied who are contemplating self-employment, I'd say go for it! I've been a freelance contractor for 20 years and never looked back. It absolves you from a lot of the uncomfortable stuff of permanent employment. No need to struggle to fit in, you'll only be there 6 months. No more having people frowning at your CV and asking awkward questions about why you're always changing jobs. Goodbye to the painful annual exercise in making you feel like a freak that is the "performance review". And best of all, you turn up and someone tells you exactly what they need you to achieve, then leaves you to get on with it. If you do it nicely, they are very happy, because that's all they wanted. It doesn't matter if you're "not a team player" or "awkward", all they care about is can you do that piece of work, and do it well :-)

    I had an interesting weekend, attempting to fish for info about how I was as a child. My mother saw straight through this and said she knew why I was asking! My father has told me that I didn't like kids even when I was one; my mother said this is an understatement. She took me to playschool because you are supposed to "socialise" children (like dogs ha ha) and apparently I howled when left there. Every day, from the first to the last. She said I was actually terrified of the other kids, especially the loud ones who ran about screaming. The only time I was calm was when I managed to hide myself in the corner of the room behind a painting easel or some such.

    Oddly I was fine with school, she thinks "because there was order and rules and you knew what you were supposed to be doing and when". I didn't apparently ever talk about playing with the other kids at school, because I didn't. I was teachers pet and became an unofficial voluntary classroom assistant in primary school (I could read a small paperback by the time I started school). Play at home she said I didn't really seem to know what to do with some toys and just abandoned them. The only thing I really liked was lego. 

    I asked her whether anyone ever thought there was anything not quite right at school, and she said no, they just thought you were very bright and any trouble interacting was due to being ahead of my peers. She said she would describe  me as a "mathematical" child - her words - and that I would decide on something, then do whatever it was with a great deal of precision. Other kids she'd seen seemed to just bobble around picking up stuff as they went along. All interesting  stuff. She would come with me if I go for a diagnosis, because she thinks it would help me.

    Thanks again everyone. And thanks for being kind, and non-judgemental. I do take to heart what you've said and maybe I won't tell anyone else, like my boss, in case they treat me differently. Maybe talking to you guys is a better bet!

  • Most interesting to be able to compare a few notes there, Trainspotter! :-) I certainly know what you mean about employers. It strikes me that both of us probably need to be moving a bit more to being something like self-employed, or even working for own benefit. I officially retired about a year ago, because I had flat out had enough of the plot I was working with. But I'm hoping that soon I will be able to move beyond the temporary convenience of just working for myself and actually start a new later life career of sorts. Something with both the mind and body. Some retraining sounds an interesting possibility too.

  • I was diagnosed 10 months ago at age 62.

    While it was worthwhile in many ways (I have a support worker who sees me twice a month at work) in a lot of ways my employer/management still don't get the problem. They seem to think both that autism is something that is turned on and off to suit, and that I am mentally sub normal. 

    I need mental simulation just like anyone else, Just because I can concentrate intensely doesnt mean i wont get bored with mundane tasks and since diagnosis that is all I have been given.  And trying to get how I feel about things,the fact I am prone to anxiety and depression,the fact that there is no magic wand and that putting on an act to mask what I am really like is increasingly exhausting is well-nigh impossible to get across to managers who see me as an awkward so and so who they would like to see the back of. 

    So although generally I thnk diagnosis is positive, there are always people who like controlling others who will use the knowledge to enforce discriminatory views. And society seems to let them.

  • Diagnosis was just a few months back at age 61

    It seems to be a positive experience for me, but it is almost impossible to find people who it is worth telling. Plus there are important others I don't want to know. Sure I have a younger self-identifying co-mentor, but we have never met. I've even been completely ignored by another diagnosed person who was aware of my recent diagnosis. A bit difficult to take, as the person concerned works as a therapist. I think you could say I have one family member who truly accepts the verdict. Some people suspect they are on the spectrum themselves, but feel no need to pursue the matter - fair enough imo! Another warned me not to live according to labels, which is also understandable - I had already resolved not to do that, since I know no diagnosis is ever entirely firm. Oh, and I live with a person to whom it is a total taboo subject. I live abroad and there's no one to talk to locally about this subject. I just have to keep myself going, alone. General Anxiety and depression have also been diagnosed. I hated anti depressives, and dropped them very quickly. But having basically self-diagnosed before formal diagnosis, I have found ways to adapt. I have been too long abroad to get any NHS help, so I had to get private diagnosis

  • 37 is certainly indicative.  I scored 35. Yes, it was positive because it enabled me to make sense of my life at last. Since being diagnosed, too, I have told people and many times have received a response something like ' I'm not surprised ' or 'I had my suspicions. ' I've been the butt of leg-pulls for much of my adult life, and I always respond badly to it - only to get responses like 'Can't you take a joke? ' etc.  Now I can tell people - though it still happens,  because I seem normal in every other respect, so I'm expected to be normal! I think it's part of the 'curse' of being very high -functioning. It is also one of the reasons that I prefer not to be around people too much.  I don't belong in their NT gang, and I never will. 

  • I have to be honest...I was diagnosed when I was 15; it all came through the week before I turned 16, and I have found diagnosis extremely painful. I see that it had to be done, but to me it just felt like doctors and professionals like psychologists joining in with the incessant namecalling. I already had mental health issues and got absolutely no post diagnostic support because I'm not sure, apart from stuff like support groups which I have to say just make me feel worse, there is actually very much they can do after diagnosis. Please feel free to correct me if I'm wrong, anyone.

  • Thank you for replying :-) If you don't mind me asking, do you think diagnosis was a positive thing for you because you  can understand why you are the way you are?

    I think that is mainly why I am toying with it. It won't make much difference in a lot of respects, but I can't help thinking it would be somewhat comforting to have an explanation for some of this stuff!

    I did take the AQ test, yes: score was 37. So in the "there may be something in this" category yes

    I will have a look at the other thread too. I am interested to know whether other people found knowing one way or the other to be useful, or not really.

    All the best to you too, and thank you for replying.

  • Hello.  I'm a 60-year-old male who was diagnosed a few years ago.  For me, on the whole, it's been a largely positive thing.  I'm very much like you in terms of childhood experiences/preference for own company.  Unlike you, I'm a failure at relationships and (happily) don't have any friends now.  I'm also not much good at coding! Slight smile

    Have you taken the Baron-Cohen AQ test?  You can find it in many places on the internet.  That's the standard pre-diagnostic test.

    I could do worse than refer you to this recent similar thread, which might be helpful for you.

    Formal diagnosis or not.

    All the best with whatever you decide to do.

    K