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

Parents
  • 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

  • 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.

  • 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. 

Reply
  • 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. 

Children
No Data