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When you’re autistic, everything is ‘more’

VioletFennVioletFenn Member Posts: 124 Pioneering
edited April 2018 in Guest blogs

Hi, I’m Violet! My son has High Functioning Autism and I was diagnosed with Asperger’s Syndrome in my forties. I am also diagnosed with Generalised Anxiety Disorder, which I manage through a combination of meds, humour and downright bloodymindedness.

First up, I’m well aware that as a spectrum disorder, autism affects different people in very different ways. Therefore anything I say or write about it is by necessity heavily weighted by my own personal experiences, but I suspect that it will strike a familiar note to many people with ASD.

One of the biggest myths about autistic people is that we lack empathy. AHAHAHAHAH. Seriously, the one thing I don’t lack is empathy. I do not lack emotions of any kind – in fact I have all of the feels and more.

headshot of woman with black hair wearing eyeliner and red lipstick and looking directly at the camera

‘More’ is the best way to describe it. What I suffer from most is an overdose of ‘more’. I am more sensitive, more emotional, more scared, more sad, more angry – to the point that it is too tiring and stressful to cope so I just shut it down, because it’s easier to shut down than to live in a state of permanent over-feel.

Real life example – the Mister went to collect his youngest daughter yesterday morning and rang me whilst he was out.

Him: ‘We’re both hungry, shall I pick up McDonald’s breakfast for everyone?’

Me (feeling fine): ‘That would be nice. Let me go check what the others want and I’ll text you the order.’

I go into his kids’ room to ask his eldest what she wants for breakfast and she tells me that he’ll need to be quick, because they stop serving breakfasts at 10.30am and it is now 10.26. I ring him back.

Me: ‘You won’t have time, they’re stopping serving any second.”

Him: ‘I’m stood here waiting to order. It’ll be fine, just give me the list quick.’

My brain: Oh my God I don’t even know what anyone wants yet and he’s expecting to order right this second they’ll refuse to take the order where the hell are my kids oh they’re in their rooms but by the time I get their orders it will be too late what is the bloody point why didn’t he ring me earlier I cannot do this aaargh why is life so stressful I am so bloody useless I can’t even order breakfast

Me: *bursts into tears down phone*

Him (calmly, because he’s used to this and is lovely): ‘Just ask them what they want and I’ll get it. It’s fine.’

And it was fine, and we did get our breakfasts. But this outwardly ridiculous scenario is the sort of thing that goes on in my head all the time.

Another incident is from nearly thirty years ago, and yet it was so dramatic – in my head – that I still remember it clearly. The bar I worked in back then was closed for refurbishment and I’d got a temporary job in a local pub. The minute I walked in, I didn’t like it – it was full of much older people who all knew each other and it felt cut off from the outside world in a way that only suburban ‘estate’ pubs can manage – and everyone was staring at me because I was new and probably looked out of place.

I managed two hours.

The landlady kept getting my name wrong. Violet is my middle name, but back then I was still using my first name – Andrea – and she kept calling me Adrian. I became convinced she was doing it on purpose. Even if she was, it didn’t really matter – she was perfectly pleasant in other ways and I really needed the money. But I could feel myself getting more and more upset at the name thing and my brain was just churning.

Around 9.30pm I heard “Adrian!!” being called once again across the bar and I just flipped. Holding it together as best I could, I put down the glasses I was washing, picked up my bag, said quietly “I’m leaving,” and walked out. By the time I got to my car (white old-style Fiesta with my initials on it, because I was that classy in the late 1980s) I was cry-heaving. How the hell I managed to drive the two miles back to my parents’ house without crashing due to teary blindness, I do not know.

I burst through the front door in hysterics and my parents absolutely crapped themselves because from the state I was in, I’d clearly been assaulted at the very least. Dad rang the pub to ask what the hell was going on and I heard them ask him the same in return. All I could say was ‘It’s awful I can’t go back there’ which isn’t a proper explanation and of course no one could believe that nothing awful had happened.

Luckily my regular job opened back up a week or so later and I’ve never been in the Adrian Pub since. But I can still remember the awful feeling of claustrophobia and needing to get out of there before I had a breakdown.

I’m rambling, I know. But that ^^ is a good example of how it feels to be me. I have no ‘middle ground’ – I feel everything or nothing. If I love something (or someone) then I really, really love it, and if I hate something then heaven help us all, because my fury knows no bounds.

I’ve learnt to cover the extremes up over the years, but they’re still there simmering under the surface. And it is so tiring.

These days I rarely watch movies unless I know in advance exactly how they’re going to make me feel – and if those ‘feels’ are likely to be sad ones then I’ll probably not bother at all, because as far as I’m concerned, life’s too short to waste some of it purposely making myself miserable. I can do that well enough without outside help.

You know when people are down and they purposely watch a sad movie to ‘cry it out of their system’? I simply don’t understand that. How is there anything nice about making yourself howl at misery portrayed on a screen?

My house is littered with books that have been abandoned half-read because I got to an emotional bit and couldn’t cope. I have to leave the room when embarrassing stuff comes on television because seeing people being made to look a fool in public makes me want to curl up into a tight ball and sing to myself with my fingers wedged tightly in my ears. And I don’t mean metaphorically – I literally have to fight the urge to scrunch myself up tight and make noises to drown things out. I won’t watch reality shows because laughing at rubbish singers in the early rounds of X Factor is the most horrible thing in the world and I truly do not get how people can sit through it without crying through sheer mortification on behalf of the people onscreen.

So no, I don’t lack emotions. I am drowning in them.

An earlier version of this article originally appeared on Sex, Death, Rock’n’Roll in April 2017. Don't forget to ask Violet your questions about ASD on the community!

Replies

  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    I love your honesty and insight! Just wanted to say, I have anxiety and everything is MORE! Isn’t it bizarre how having extraordinary health issues can build common ground and knock down walls between people? Bizarre because I can’t think of the right words. You have certainly given me food for thought. Thanks. 
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • endo64endo64 Member Posts: 20 Courageous
    Violet, I also was diagnosed as high functioning Asperger in my 40's and also have empathy overload, I feel for others even though I am not connected to them in any physical way. Rarely watch Movies preferring documentaries from which I gain knowledge as a reward. I prefer a hermits life as I find social events heightens my already over sensitive brain. I feel when others are happy and I feel when they are sad and know when they are ill.

    I was able to visualise your scenarios as I have had similar myself and can identify with the brain processes until it screams no more. I have 4 children, making a choice myself is difficult enough and I often do without rather than making the wrong choice. When others choices are dependant on my choice is the most difficult of all situations and even if I get to choose last my brain is still in chaos state. 

    If Asperger Autistic were lacking in empathy life would not be so difficult to process as it wouldn't matter what choice we made, as we wouldn't care how our choices would impact anyone else.  I agree with everything you say and if anything we are over empathetic, as you see I also rattle on so will stop there before given you another chapter of like style stories of similar situations.
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,730 Disability Gamechanger
    Thanks so much for sharing this @VioletFenn :)
    Scope
    Senior online community officer
  • VioletFennVioletFenn Member Posts: 124 Pioneering
    @debbiedo49
     Hahah yes, I think we all have far more in common than we sometimes initially realise ;) Thank you :)

    @endo64
    I am SO with you on the documentaries thing! I have iPlayer running in the background whilst I work and go through endless history docs about the most random things! And yes - life might be easier if we actually cared a little bit less. But then we wouldn't be us ;) 
  • endo64endo64 Member Posts: 20 Courageous
    have you read my Asperger syndrome and me post i put up earlier lol its a little like your what do you want for breakfast scenario :D
  • VioletFennVioletFenn Member Posts: 124 Pioneering
    endo64 said:
    have you read my Asperger syndrome and me post i put up earlier lol its a little like your what do you want for breakfast scenario :D

    Hahaha no! I shall go look in a minute ;) 
  • JaJJaJ Member Posts: 1 Listener
    edited April 2018

    Hi @violetfenn My sister was diagnosed with ASD last year and is in her forties. She is now much more open with behaviours that previously she must have been masking which is good on the whole. We have been close and she has showed empathy and support in the past.However, she recently became very aggressive over a family issue which has resulted in much bad feeling because of the way she handled it, which included being quite abusive to me. I feel I can no longer talk to her about it or trust her with other feeling I have because she remains adamant that her position is the right one and  I do not want to upset her again as when she focuses on it she can no longer get any perspective. I am trying to understand but also feel that there is no excuse for bullying and aggressive behaviour. Am I being unreasonable? It would be great to hear your thoughts as someone who was diagnosed in their forties.


  • endo64endo64 Member Posts: 20 Courageous
    JaJ. Read my poem asperger and me it will give u some insight to possible thought processes ur sister may have. Also i find that writting is a better way for emotional conversion. So maybe try writing your points from ur view trying to be balanced in ur review of the negative interaction. This will allow her to understand ur feelings which she can digest before writing back. Dont forget to ask for a reply andcthank her for taking the time to read it. 
    Hope this helps 
  • GeoarkGeoark Member, Scope Volunteer Posts: 1,375 Disability Gamechanger
    @VioletFenn

    I burst through the front door in hysterics and my parents absolutely crapped themselves because from the state I was in, I’d clearly been assaulted at the very least. Dad rang the pub to ask what the hell was going on and I heard them ask him the same in return. All I could say was ‘It’s awful I can’t go back there’ which isn’t a proper explanation and of course no one could believe that nothing awful had happened.

    I had to smile at this one. My daughter loves her job working in a busy store, but she does have her bad days. She came in one evening absolutely seething and swearing like a trooper - usually a clear indicator that something has really upset her. Once she calmed down she came and asked if we could talk. She asked if she packed up her job and couldn't find another for a few months would she be alright. No explanation of what happened and I know better than to ask her but assured her it would be okay. All I asked her was not to give her notice in while she was so upset and angry without talking to me first. She has never told me what happened but did get past it. 

    A lot harder in the earlier days was listening to her crying 1 or 2 in the morning because of something that happened at work, wake up in the morning saying she did not want to go to go to work, then got ready and went.

    My attitude has always been that however minor I think the issue is it is important to her and that is enough. One thing I have always admired about her is her resilience and no matter how bad things get for her she will work her way thorugh it. So if she did come home upset and told me she had given her notice I would accept it without question.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • fedupaPIPfedupaPIP Member Posts: 7 Listener
    Hi this is how my granddaughter is my daughter has given up fighting the system to prove that not just 1 but 3 of her kids have autism and adhd
    because Mia's "happy and doing well" they say there's nothing wrong they don't see my ill moo when she's at home routine changes awful disasters hysterics tantrums struggling to fit she's 12 and it's so unfazed we don't want my grandson to go to mane stream school he'd be more bullied cus he's extrovert
  • GeoarkGeoark Member, Scope Volunteer Posts: 1,375 Disability Gamechanger
    Hi @fedupaPIP

    We had this issue with our daughter. For years we expressed concerns and they were mainly ignored. Even when one of her schools did look into it and arranged for an 'expert' to observe her the report came back basicly dismissing our concerns.  She is very rule orientated and academically bright, so besides some 'odd' behaviour patterns she was going under the radar.

    She would come home and all hell would break loose. In the end it was a member of staff looking out a window and watching my daughter in the playground while they were discussing who would need extra support transitioning to secondary school and mentioned her name that they started comparing notes and realised 'something might be going on' and spoke to the educational psychologist that it began to be taken seriously.

    To be honest there are times when she functions really well and I begin to doubt if she has autism, then something happens and the sheer impact it has on her leaves me with no doubt. But I have also learned to recognise the subtle signals she gives off when something is bothering her but not enough for a full melt down.

    My best advice for your daughter is to keep a seperate diary for each of the children noting her concerns. Where possible include what lead up to the behaviour and the childs' response. After 3 - 6 months arrange to speak to her doctor and go through her concerns. The doctor can choose to refer this on if they feel it necessary. 

    Unfortunately I have spoken to parents whose schools have outright denied to accept there is an issue, and in one case told the mother even if she got a diagnosis they would ignore it, then spent time complaining about the childrens behaviour which is often a clear indicator that they may have autism. 


    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • fedupaPIPfedupaPIP Member Posts: 7 Listener
    The sytem is always a fight
    They say nothings wrong then ring up to day mias picking up food from the floor is she well nourished
    She never stops eating
    Myy daughter credits her card for a weeks treats n dinners
    N she blew it all then had no money
    Mom daint know as far as she was concerned ber money card had been filled
    Shes stealing this is part of her cond she steals when shes stressed or naughty
    Its fediculous
    Been drs been specialists
    She dont line up cars n toys in cront of them
    Go home n put summatt outtz place n youl know it shel tell u
    Shes blunt if your hairs dirty or u smell shel tell u
    I kno normal kids do this stuff
    But even as a baby n older shed just lir in a cot not murmour not cry
    No emotions
    Do so sad
    But shes got such a wanderful soul i adore her n all my cookie grandmids
    My 3 yr old grandson
    Lines toys up at the walls
    He sleeps with a very specific item
    He has to take a specific item to nursery even gor 3 days straight he would not let go of a sponge scourer took it to bed had melt downs if he couldnt find it
    Still keep preying someone will listen
  • fedupaPIPfedupaPIP Member Posts: 7 Listener
    Pls excuse my spelling errs
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