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

  • there's also a good one called "mynoise" which has a website version as well - am listening to it right now (I like the one called "speech blocker")

    https://mynoise.net/NoiseMachines/whiteNoiseGenerator.php

    I was actually diagnosed with hyperacusis (and pulatile tinnitus) before ASD, and it was my sensory issues that lead me down the autistic route in terms of diagnosis

  • This app is free (ad free version costs £2-3) and has a selection of 'white noise' sounds you can play to aid with sleep. V good for relaxing background sounds to block other distractions in general. 

    https://play.google.com/store/apps/details?id=ipnossoft.rma.free

  • 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. 

  • Hi AAArunner,

    I see you've had great community advice.  I hope the following information helps too?

    "Supermarket chain Morrisons has introduced a weekly "quieter hour" for autistic shoppers who struggle with music and noise.

    Its 439 UK stores will dim lights, turn music off, avoid using the tannoy and turn check-out beeps down on Saturdays from 09:00 to 10:00."

    The NAS charity is also encouraging retailers to take part in a nationwide "autism hour" in October.

    Hope this is useful,

    Nicky-Mod

  • I have the same overloading problems - it's when the world is inflicting itself onto you without your agreement. I solved it by taking control and creating my own distractions. The easist one is sleeping - I have sounds that I control to distract me - I found having a TV on very quietly so it's an unintelligible mumbling - choose a boring channel - nothing exciting - or even CDs on repeat of gentle music. It gives my brain something to latch onto that in not unpleasant or annoying and I am in control - I can stop it or change it at will so I own it.

    Silence is hell. My brain kicks my ass and keeps me awake. Always something to worry about.

    Bright lights - baseball caps or tinted glasses work well and curtains - all pretty easy.

    Shopping - I go at times when no-one else will be there - early, late, quiet times on dead days etc. I hate crowds and the chaos and noise they bring.

    Social activities - I find the venue is the problem - reflective walls multiply the sound levels and there are certain room dimensions that will trigger all the wrong frequencies. These are easy to avoid once you learn to spot the risky areas.

    People - very risky. Trying to find friends who are on your wavelength is hard work. I joined a group called Meetup.com where people arrange local social events where you can meet people. As you're working, I assume you mostly pass as NT so you might want to dip your toe in because it's quite superficial friendships with not too much commitment. I go to lunches, coffee mornings, visits to museums etc. where the conversations are fairly predictable - the usual how are you, what have you done recently, how's the family etc. - nothing too heavy or in-depth and you have control - you can decide to have a break from it or just do the meetups you want to.

    This is how I cope without becomming a hermit.

  • Thanks guys, bit of reading to do from that diet link, just trying to work out the best way for me to make the most of things. Hoping that diagnosis means I can start to put right things that go wrong and still a bit unsure of it all. 

  • Hi AAArunner

    Welcome to the forum.

    I read this and pretty much "ticked all the boxes" as I was going through.  Noise, bright light, stress/anxiety, frustration/confusion around people - they're all inter-related in some way.

    Noise - ear-plugs helped me sleep when I had neighbours that worked nights at home (so they were walking around and talking during the night - thankfully, moved away) but I also used in-ear headphones to listen to music.  They were pretty good at blocking out sounds but you can also get noise-cancelling (useful at home to block out the domestic sounds - such as children playing)

    Light - I also used "blackout" curtains to help with sleep and they're really useful during summer months with the late sunsets and early sunrises.

    Stress/Anxiety - I've found that the best stress beater is sleep - and you're not getting enough of it.  Between 2014 and 2017 I tried to hold down a number of jobs when I was under a lot of personal stress in my life.  Lack of sleep added to all the stress led to physical exhaustion and with that came a couple of serious illnesses - pneumonia and MRSA.  So I would suggest that you focus on this as a priority - try and take it one step at a time.  Medication or meditation - just find something that helps you calm down - a routine that helps forget the stress of the day - a leisure hobby that also gives your mind something else to concentrate on (that last one could act like noise-cancelling headphones by helping to blank the stressful thoughts).

    People/confusion - not an easy one as there will always be situations when it can't be avoided but don't ever be afraid to say "NO".  Interacting with people on a social level easily exhausts us and I find shopping always to be a challenge with people milling around.  

    Supermarkets - I've been doing the weekly shop at the same one for years.  I've learnt where everything is - hate it when they suddenly move things - but I've got a map and a route to follow.  I've also got a list with all the items written based on the route I'm going to follow.  And I go at a time when it's not too busy.

    Other shopping - This is kept to a minimum and, again, I go armed with a list with no more than 4 places to visit.  I've been going to the same corner newsagent for over 20 years even though there's a bigger (busier) one with more selection.  So, if you're going with colleagues to get a lunch talk with them, find out what they're looking for and let them guide you to where to find it - if you go regularly you'll start to learn the map and the best route to get what you want.

    In both cases they're (as Graham says) just like a military operation.  In and out as quickly as possible with a clear objective.

    Notes/meltdowns - Taking notes is a good idea but a visual trigger is more important to me.  Like many with Autism I have a visual mind and words take longer to process - I've had loads of training sessions with copious Powerpoint slides and handouts that have been forgotten almost as soon as I've stood up at the end.  I learn more through a video or, even better, hands-on practical examples.  Usually on the lead up to a meltdown it will be a scenario - like a scene from TV or a film - rather than a sequence of words.  As soon as I "see" that scenario (or something very similar) I then go on my guard to correlate and compare so I'm in a position to take avoiding action.  If it's new and unique then I have to process after the event - so the triggers are added to the visual arsenal for future use.