Published on 12, July, 2020
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
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
People want or gets diagnosis at different times in their lives and for different reasons. If you are a child or teenager perhaps the choice of whether to or not is taken from you and that may make a difference about how you feel about it and the life experience you’ve had til then. For those of us who are diagnosed in later life it’s more our choice by circumstance or actively seeking one. After a 50 years of trying and confusion I only started looking into it by happenstance and escalated from there and still learning and researching. So for me, though in practice it hasn’t much for me yet, I thought I had got to the root cause of why. Only to find out I may have other connections I didn’t know about which I’m still thinking about. Some people accept themselves as they are and grounded in life so choose not to pursue a diagnosis. I haven’t accepted myself as I am and not grounded In the way I would wish so a diagnosis was very important to me. It’s a very personal decision. A diagnosis may help you to get access to work adjustments at work, knowledge about autism etc can help you identify what you can and can’t do so that you can support yourself in applying for benefits etc You can be part of the autism community if you so wish with or without a diagnosis. Perhaps others might be able to mention other positives to a diagnosis. School, growing up as girl and teen and transport are all things I identify with. I like patterns too but I’m not mathematically or scientifically oriented nor do I have a good memory. Your job sounds very interesting.
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!
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