Recently Diagnosed

Hi, I am in my mid 30’s, I was diagnosed early this year, I am married and work full time. I never really thought I had an “issue” as such, I have never been comfortable in situations involving people I find it difficult to have conversations particularly with people I don’t know. I dread any kind of situation which involves meeting somebody, family parties, meetings in work, appointments. This has caused me some issue over the years I think ultimatley this has lead to me disliking people. I always just put this down to being shy and a bit of a loner. My diagnosis came about following a serious accident I had a few years ago, ever since I have struggled with various ailments, mainly fatigue, insomnia, really bad headaches aversion to bright lights and illness resulting in me being backwards and forwards to my GP. They where very good and ran tests for everything with no issue found.  I recognised some of the symptoms during a conversation about Asperger and completed an online test in desperation to find some answers and it went from their. Since being diagnosed I have told no one bar my wife and HR in work. Initially following my diagnosis I was a little sceptical to say the least, I find the whole experince some what bizarre, the kind of closure if you like was to discuss the diagnosis revive a written report and be thrown a load of leaflets about benefits, care workers etc. The main offer of help was advice to visit local groups despite me saying I have no intention as I hate people. As a result I somewhat discarded the diagnosis other than to tell work who have made some adjustments but no one including me really knows what adjustment I need, hence this post. I have been reading up on things and recognised I have far more traits than I thought for example shopping, I go into a supermarket and just get confused, for instance I would go in to Tesco with colleagues to get some dinner during work and would just have no idea what I was doing, I just walk the isles unable to make any decision on food or what to buy and in the end I would just select a Cornish pasty, it would be similar when dispatched by my wife to get some shopping, despite having a list usually come back having forgotten most of it. Prior to my diagnosis I had an incident in Sainsbury’s where I had gone to buy some Gram flour, I went to the baking products assuming as it was flour that’s where it would be, it wasn’t, I tried the “free from” area and the healthy eating area and couldn’t find it. I had been in there about 30 minutes and ended up having a mini panic attack to myself which is unusual, I have the ability to get quite frustrated at times  but never experienced that before, it has happened a couple of times since but I just put it down to tiredness/stress.  

The reason for my post was to seek some advice on what I can do to help myself out with my struggles in the main as follows.

Noise.

This really frustrates me and I find it very oppressive, I have a dog that barks at the window, 2 kids one of whom last night for example was bouncing a wooden dice on the floor whilst playing a board game it was like a dripping tap that seemed to get louder and louder and just got me so frustrated, I ask him not to, he ignores me 3 or 4 times in fact dong it more to annoy me and then gets shouted at which results in me being shouted at by my wife. 

The other side to noise is it affects my sleep, I can literally hear everything, the neighbours next door walking around, motorbikes, cars, wildlife whatever it is, I never realised I was different in this I assumed everyone could hear what I can and when my wife would say she couldn’t hear anything just assumed she was deaf or what not. 

Sleep, I can’t, I’m lucky to get 3 or 4 hours, I’m in physical pain partly due to issues following my accident, I can’t switch my head off, I worry about what tommorow will bring, meetings I have, training courses getting to work, findng somewhere to park, there’s about 300 people in the building and 150 parking spaces on sight. Pre diagnosis I have had all kinds off the Dr, amitrptilne, temazepam etc, has no effect, and I don’t really want to be taking medications.

Bright light, the sun hurts my eyes and I get headaches even when it’s quite overcast, I struggle at night when driving with headlights on the road, to the point where prior to diagnosis I had been to the opticians and GP. Optician said my eyesight was virtually 20/20 but gave me a low prescription as I was symptomatic, made no difference. GP referred me for an MRI no issue with that.

Work

Gets me really stressed and tired, I work 10 hour shifts mainly at a computer but I do have to speak with the public and other various departments. I get so annoyed where those departments or colleagues don’t do what they are meant to, I have at least 3 arguments a day.  I hate using the phone, I find I get really anxious about making a call but have to do it. I hate answering it, we have recently moved to skype which is great as I just turn it off (I’m not meant to).  Using the phone isn’t just a work thing, I hate calling anyone. Even with email I am the same, I dislike any interaction with anyone especially if there is the hint of a dispute. 

I hate gong into crowded or loud places, clubs, bars etc. I tend to avoid them but there is the occasional “do” I must attend or the bigger issue is work, there are times I have to go into these places and this can’t easily be avoided without affecting my career prospects. 

Shopping issue, get very confused in the shop as described above. 

I get very frustrated easily with things above and in other situations I don’t recognise yet, I think these may be “meltdowns” after discussion with the occupational therapist and google doctor. I have started to try and keep notes of what triggers me. Is there anything I can do to avoid these. 

Any advice would be most grateful.  Thanks

Parents
  • Hi AAArunner. i can relate to a lot of what you have said. I am 45 and was diagnosed a few months' ago. At first I was quite relieved to have the diagnosis and didn't think too much about it. Gradually, I have thought about it more and more and realised that autism has had a huge impact on my life.

    I have always dreaded so many different social situations. I have had cognitive behavioural therapy (CBT) several times for social anxiety which helped a bit, but of course it was before I knew I had autism. I also worry constantly about work - every time I have a meeting I am scared that I will say the wrong thing. If I have to go somewhere new I am thinking will I find the place, what do I say to the person on reception, how will I be able to talk to someone I don't know without feeling incredibly awkward. All of this is very exhausting which is how I managed to think of autism eventually - I had quite a few blood and other tests as I was constantly tired and then I saw some documentaries about autism and began to wonder if I had this.

    I have by no means solved all of my problems but I can share some stuff that has helped me just in case it is of use to you:

    1. Social anxiety and unfamiliar situations:Through CBT I have a few methods of trying to manage my anxiety. One of them is to have a sheet of paper with the following headings (plus I have put an example of a recent situation I faced in here to help it make sense):

    * Situation - going to a restaurant for a friend's 50th birthday party - I have never been to the restaurant before and there will be lots of people there that I don't know. 

    * Expectations / fears / anxieties - I am worried that I will say the wrong thing, not have anyone to talk to and be standing on my own, feel awkward and anxious, just want to leave and have a lot of feelings of dread. 

    * What am I going to do differently or try out? I am going to try asking people questions to take the focus away from myself, observe how other people interact and make sure that I tell a friend I am anxious so that they can look after me if necessary. 

    * What happened? What did I learn? The evening was fine - I talked to some people that I had not met before and it was okay. I realised that my expectations of myself in social situations are far too high. I don't have to be perfect and talk to everyone in the room. I just have to try and relax and talk to one or two people. 

    When I get stressed about something I use this template and write down my thoughts. It really does help me to a) plan for the situation and b) stress a bit less as I can see over time that I do have abilities. 

    2. Relaxation: I find it really helpful to think of things that make me relaxed and to try to do something every day. For example, I like watching films or documentaries, walking in nature, listening to other people talk and observing others. If you can do some things that you enjoy it might help with the anxiety. This is not always easy and certainly does not eliminate my anxiety but it can help to bring the levels down a bit. 

    3: Accepting yourself: I have found it useful to not be so hard on myself. I used to think that I was weird, that I had no friends, that I was not good in social situations like other people. Since the autism diagnosis I have decided to go a bit easier on myself. I do have strengths and my friends like spending time with me. I am trying to recognise when I need to be on my own and just to tell people and do it. Nobody is perfect and if you can accept some of your eccentricities you might feel less down about things. 

    Good luck. I think you have explained your difficulties really clearly which means you know yourself well. That is surely a great first step to overcoming the challenges so well done you. 

Reply
  • Hi AAArunner. i can relate to a lot of what you have said. I am 45 and was diagnosed a few months' ago. At first I was quite relieved to have the diagnosis and didn't think too much about it. Gradually, I have thought about it more and more and realised that autism has had a huge impact on my life.

    I have always dreaded so many different social situations. I have had cognitive behavioural therapy (CBT) several times for social anxiety which helped a bit, but of course it was before I knew I had autism. I also worry constantly about work - every time I have a meeting I am scared that I will say the wrong thing. If I have to go somewhere new I am thinking will I find the place, what do I say to the person on reception, how will I be able to talk to someone I don't know without feeling incredibly awkward. All of this is very exhausting which is how I managed to think of autism eventually - I had quite a few blood and other tests as I was constantly tired and then I saw some documentaries about autism and began to wonder if I had this.

    I have by no means solved all of my problems but I can share some stuff that has helped me just in case it is of use to you:

    1. Social anxiety and unfamiliar situations:Through CBT I have a few methods of trying to manage my anxiety. One of them is to have a sheet of paper with the following headings (plus I have put an example of a recent situation I faced in here to help it make sense):

    * Situation - going to a restaurant for a friend's 50th birthday party - I have never been to the restaurant before and there will be lots of people there that I don't know. 

    * Expectations / fears / anxieties - I am worried that I will say the wrong thing, not have anyone to talk to and be standing on my own, feel awkward and anxious, just want to leave and have a lot of feelings of dread. 

    * What am I going to do differently or try out? I am going to try asking people questions to take the focus away from myself, observe how other people interact and make sure that I tell a friend I am anxious so that they can look after me if necessary. 

    * What happened? What did I learn? The evening was fine - I talked to some people that I had not met before and it was okay. I realised that my expectations of myself in social situations are far too high. I don't have to be perfect and talk to everyone in the room. I just have to try and relax and talk to one or two people. 

    When I get stressed about something I use this template and write down my thoughts. It really does help me to a) plan for the situation and b) stress a bit less as I can see over time that I do have abilities. 

    2. Relaxation: I find it really helpful to think of things that make me relaxed and to try to do something every day. For example, I like watching films or documentaries, walking in nature, listening to other people talk and observing others. If you can do some things that you enjoy it might help with the anxiety. This is not always easy and certainly does not eliminate my anxiety but it can help to bring the levels down a bit. 

    3: Accepting yourself: I have found it useful to not be so hard on myself. I used to think that I was weird, that I had no friends, that I was not good in social situations like other people. Since the autism diagnosis I have decided to go a bit easier on myself. I do have strengths and my friends like spending time with me. I am trying to recognise when I need to be on my own and just to tell people and do it. Nobody is perfect and if you can accept some of your eccentricities you might feel less down about things. 

    Good luck. I think you have explained your difficulties really clearly which means you know yourself well. That is surely a great first step to overcoming the challenges so well done you. 

Children
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