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!

  • I would too if it came with the joke!

  • Now if you said 2/3rds of a Mint Penguin, I would be in :-D

  • :) - any fancy 5/8 of a hob nob! . . ? Anyone! Lol

  • That is a fantastic analogy and very apt - I far prefer broken biscuits (especially the ones you can get in a mixed bag - my absolute favourite :-9)

  • what a lovely sentiment x....I can live with rubbish in real life.....but the virtual self....well! Lol x

  • I also agree.....Hope you’re ok Penrose76... the people here are indeed lovely....we’re like a big warm tin of broken biscuits....but we’re really quite moorish! Cookie ....we just need careful handling x

  • I score between 31-35 on the AQ test depending on my mood. I asked for a referral and saw a psychiatrist who knew nothing about autism by his own admission and refused my request for a formal assessment. No such service is available in my area he said. So after initially being angry and disappointed I have reconciled myself to a self diagnosis. As I am now retired from formal work for the last 8 years and live alone I see no point in pursing this further. There is no benefit I can see from it in terms of improving my current life, and the grim reaper looms larger every year.

    Were I much younger however and still active in economic terms (I have a pension) I would probably make a different decision.

  • I've dropped my hours to part-time now.  I simply can't handle irregular shift patterns, or overtime.  It's not about being imperfect, or not conforming.  It's about being different.  And difference is exhausting.  I just want to escape from it all, after a lifetime of it.  Sleep helps.  Sometimes, I use other substances to change the way I feel.  If I had a pile of money, I'd buy an island and just go.

  • I had similar with my last full time job, I was seen as awkward. Since, I stick to part time jobs, but still find awkward situations I cannot handle. Irregular shifts, not being perfect. I know it is me, I don’t conform, I don’t see the world the same as them. But I just find everything so exhausting, I just want to sleep all the time! My life is just part time work and sleep! 

  • More or less like me.  My score was around there, too - it isn't low, considering that the average NT scores around 15.  The psychologist who diagnosed me was in no doubt.  Yes... life has been very exhausting - something that NTs don't seem to understand.  Everything is harder for us.  Twice this week at work I've had my leg pulled by someone who should know better.  And once, on Friday, someone else who should know better said to me 'That's not autism.  I do that, too.'  It drives me mad.

  • After years of thinking I had depression and related anxiety. I have scored 33 in the tests on line. It makes sense of my life now. I have been trying to hard to fit in and that just isn’t going to happen. It is a low score, but I am probably just on the edge, which may be worse, as I can function well, but find it totally exhausting. 

  • I'm sure we're all just a bit hacked off with the expression, "Everyone has their autistic moments", but it might well be worth changing that to, " Everyone has their flaws". It helps me to remember that, and avoid always comparing my flaws with those supposed normals who supposedly have none. 

  • I think here isn't perfect because we are all flawed and so is the format of this forum, but for the encounters with other real people in a similar boat there is nowhere else to compare. We might be a bit rubbish in real life but here we are pretty good people.

  • I was diagnosed about three weeks ago.  I kinda felt that I might be, because a lot of traits that were being highlighted in my youngest son (who was diagnosed with PDD NOS, then Asperger's) were traits that I could definitely see in myself.  For years, I was ok with being NT with maybe Asperger traits and I was fine with that.  When I went through a depressed phase, however, I felt that I needed to know the truth - not just be self DX or self identifying.  I thought that the psychologist would probably think the same (NT with AS traits), only to find that she gave me a resounding YES.  I am awaiting her final report - due in this Thursday.

    I share some of the same issues as you do - pattern spotting for one, overwhelmed by people/noises/both.  I too, have problems with public transport and I didn't fit into the 'giggly girlie' box either.

    I am yet to see if I feel actual benefit from a diagnosis.  I went through a familiar pattern of surprise, understanding, even denial - now, I am gradually accepting.  I think it's because you get a different perspective and when you look back on things retrospectively, it makes the story of your life have a far different slant.  It is not something that I want made public, though.  The one thing I have found is that you will get a lot of support on here.  People have been especially nice and are really good with sharing their stories and offering support.

  • I concur with so much of what you've said Missy. x

  • 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.