These are 2 old Tumblr posts I wrote, that I have often been asked to share, Its still a good window into Aspergers life.
Living with an aspie
So hands up who’s heard of Aspergers? Aspergers syndrome? Aspies? ASD?
Ok fair enough, more than 10 years ago anyway.
Its definitley more freely discussed than ever before and a syndrome people have sort of heard of, have broken bits of facts about, know its sort of linked to autism etc but not much else.
In all honesty until about 3 years ago, I didn’t know too much myself and was in much the same boat. I came across it whilst doing research into teaching children with learning disabilities and knew the bare minimum about it.
Then I met my husband.
I always knew he was different, you cant not. He’s confident, bold, outspoken, driven and focused. It was only after living with him that I realised, some of his traits didnt follow a normal pattern.
I dont really know how to explain it but his pattern of speech is sometimes odd. He takes a LONG time to get things out, almost like he’s taking his time to process things and will often repeat his point over and over, till he thinks you have really taken on board what he says. I used to jokingly say he speaks like a politician, giving himself so much time to think.
He always speaks his mind and this often (obviously) offends people. He does things in such a particular way and gets really stressed out when that isnt followed.
These things on there own dont mean you have Aspergers of course and it was never something that consumed my thoughts. It was only when re-looking at an article on Aspergers I suddenly saw familiarity, and started to think this may be the cause of some of my husbands daily conflicts.
We spoke about it and he agreed. We are a very close couple and we dealt with the findings in the way we deal with most things, by taking the piss out of it.
Lets get things straight, I love his oddities and his quirks just as he loves mine and syndrome or not most of his traits are why I’m with him!
We were pretty sure that he had it after extensive reading and after broaching it with a few family and friends we did realise its the ones closest, sometimes that find it hardest to understand.
I knew people thought I was making excuses for him, that I was giving him an excuse to be ‘rude’. Im sure people thought, ‘brilliant, shes just come along and diagnosed him with something’ but when you spend as much time together as we always have you see things that others dont and granted im particularly in tune with people and I do notice anomalies.
For a while we almost just joked about it but when our daughter was born things became difficult. we had spoken to a few Aspergers specialists while I was pregnant and they had said ‘yes he sounds like he has it.’ ’ yes he needs assessed.’ ‘we really think you should do this before the baby is born’
In hindsight this was an error.
When our daughter was about 6 months old my husbands stress levels became horrific, he was having anxiety attacks, derealisation and all kinds of other stress related problems. He was snappy, dark and low. eventually he took himself to the doctor with depression and so started our battle.
For 6 months we were passed from pillar to post, appointments, not being passed onto the right departments, no follows up. It was a nightmare. He became so low in Jan that he was no longer able to be with our daughter alone. Obviously the pressure on me was immense. We were eventually put through to the psychiatric nurse at the local hospital and when we discussed an assesment for un-diagnosed Aspergers were told this just wouldnt be possible on the NHS. That for adults it alomost fell through the cracks.
It isnt mental illness and it isnt a disability.
He advised my husband to get treatment for his depression rather than worry about whether he had Aspergers. He told him not to mention Aspergers to the doctor or they wouldn’t see him for the CBT.
We did this and my husband started CBT therapy. This is a fantastic therapy but after a positive first session he was starting to question whether the doctor was smart enough/ worldly wise enough, said he was too much for her and she didn’t understand him.
When asked if he was lacking in self esteem, whether the ‘parrot on his shoulder was talking negatively about him’ he replied ‘no, I think I’m brilliant, I’m doing everything right, everyone else is getting it wrong!’ session ended and she was out of her depth. She then tried to discuss with him the possibility he was a perfectionist.
The sessions ended with him no better than when he started. He was still having meltdowns (where he would completely lose his head, possibly ose his temper, walk out the house, not be able to function, and more often than not sleep for hours), still low and feeling lost.
After a family member made a joking comment about him having Aspergers, we decided it was time to stump up the cash and pay for him to be seen privately. We wanted to know either way.
The test is 3 hours long, they ask hundreds of questions, they spoke to me briefly, he had to do lots of tests with emotion recognition and at the end of a very long session was told that he has full Aspergers.
Most would feel gutted, but we felt elated. He wast alone, there was reasons and understanding can only lead to a more positive future.
Since his diagnosis is July he hasnt had a meltdown. We are reading what we can and understanding more about us both all the time.
Its still about give and take, I will often have to remind him that I DONT have Aspergers, so will often just do something spontaneous and not plan it (not something most Aspies find easy)
My husbands aspie traits:
-Seeing the world in black and white. No grey areas.
-Saying things that most wouldnt dare too.
-Massively over explaining in the most minute detail.
-Obsesses over order and doing things in a particular way.
-Loves to follow instructions
-Researches everything to the point of ridiculousness
-Forgetting to eat because he is so focussed on the things he is doing.
-If he cant do something to what he see’s as perfection, he wont even start it. He cannot see why you wouldnt do something perfect! “everything matters’ is a phrase I hear a lot.
-He loves repetition. If I wear my hair a certain way ‘wear it like that always’ we joke that we repeat the same jokes and ‘skits’ around the house but he likes the familiarity.
-He cannot do quick changes in any of his plans and gets very stressed out when changes to his plans are made.
-Aspies tend to have their favourite ‘topics’ or interests. His are, his work, football boots/sportswear, politics, money and saving money (never a bad things) and me/Brooke. A lot of aspies are seen as cold towards loved ones or lacking in emotion. I dont see that with him at all, in fact he is gushing, sometimes to the point of making others feel awkward.
-He is blunt, to the point and never lets up if he’s got a bee in his bonnet about something.
-He is always telling people how to do things better (basically his way)
-Noise gets to him a lot and he will literally come in and turn the TV off if he’s thinking about something and cant concentrate. He wont mention it though, he’ll just come and turn it off.
-He just walks out the house without so much as a bye, if I call him and he doesn’t want to speak he will say ‘what do you want, ive got nothing to say.’
The list is endless and most things we can deal with by laughing. The understanding of others helps so much.
It would be nice for people to realise that sometimes people think differently and it isnt as straight forward as saying ’ you cant say that’ ‘why would that bother you?’ people are wired differently. Learn more about those around you and we can all live alongside each other.
Just because Aspergers in invisible doesn’t mean it isn’t there. If someone was deaf, you would find ways to integrate, lets all learn to do this with other conditions too.
Dont just dismiss someone as weird or obnoxious, imagine you lived in a world you didn’t really understand? It isn’t easy for those around someone with Aspergers but its much harder for the person with it!
So you think you know Aspergers?
So I know I’ve written something similar before but I read something yesterday by a Scottish comedian Jane Godley and it inspired me to write an updated version of a previous blog.
My husband has Aspergers. Aspergers is on the Autistic spectrum and there are currently over 700,000 people in the UK on this spectrum, so he’s not alone.
He was diagnosed as an adult, last year after a long slog with the NHS.
Aspergers, as with many similar conditions is often pretty invisible to people. I guess this is a good and bad thing. Yes people cant judge you, but people also don’t know the silent struggle.
People often want to know why I would bring it up, its very British to keep things like this to ourselves but neither me, nor my husband have any issue taking about it as its part of who he is and he’s just great. I don’t talk about it as an excuse (as people irritatingly tell me all too often,) its just sometimes people need an explanation about his behaviour and I don’t want them assuming he’s being rude or something equally negative.
I thought I’d explain a bit about how it manifests itself in everyday life for Ross, so people can possibly try to understand, warts and all what its like.
People with Aspergers can be very rigid in their views, they like things done in a very particular way and if its not done that way, can become extremely agitated. In Jane’s blog she mentions the way she puts dishes in the dishwasher is a constant battle. Well the kitchen is such a battle for me and Ross that he does pretty much ALL of the cooking (bonus for me)
In the kitchen alone Ross’s traits:
-The dishwasher has a very particular order, he will reload it if its not in that order.
-He will rarely buy sliced bread and as I’m shocking at cutting it straight he has to do it, he will make the slices so perfect every slice will be exactly the same, even if this takes 10 minutes.
-He will watch me pour water from the kettle, worried I will scold myself, often resulting in this exact thing happening because he is hovering over me. He will not allow me to put water into my hot water bottle as he thinks I won’t be able to without an accident.
-He has his bin in there which he is extremely proud of (LOADS of research went into finding the perfect bin) and will talk about it to people when they come round.
-Freezing things, he’s obsessed with freezing food. Hoarding is a thing with him, he hates to throw things away and likes things to remain new. This is his way of hoarding in the kitchen. He once came to me and said “ you’re going to have to watch me, i’m freezing a lot of food and i’m not eating any of it”.
-Cooking is one of his passions and if I don’t make food in exactly the way he has heard a chef say it should be done, he will say I’m disgusting and wasting good food.
Just this week he watched something about how to make scrambled eggs. He wanted to make me it for breakfast. I told him not to put cream, butter or anything too creamy in there, that I prefer it fluffy, made with a bit of milk and not much else, that I’m fussy etc, etc.
He however wanted to make it how he had saw it on his program and refused to listen. I allowed him to make it and when it was finished it was creamy and full of butter, because thats ‘how it SHOULD be made’ I then had to make my own a constant stream of ‘you cant cook’ ‘what a waste of eggs’ ‘its going to be disgusting’ and evil stares because he had taken personal offence in me making it differently to how he had now decided it should be made.
Once he had calmed down he fully admitted had I made it like that last week he would have thought it looked good, because thats how he would have made it then (before watching the cookery program stating otherwise)
You see, we can laugh about it, I know the routine. In his mind though there is black and white, no grey.He had decided that the new way to make scrambled egg was right, so there could be no deviation from this without it being utterly shit.
OK so thats a pretty trivial example but thats 24- 7 with Ross. Its not thats he’s being horrible its just the way he process’s thoughts. Very, very literally and very, very black and white.
That wont change.
Thats not easy for everyone around him, he says things daily that get a raised eyebrow or much worse, but I’ve stopped telling him to not say this or that (most of the time) because sometimes its exactly what someone needs and why should I stifle every thought.
Aspergers people often have a great way of shining a light of peoples stupidity or just brining a new pair of very literal eyes to a situation. This can often mean they become a mirror to peoples flaws.
People will often take offence to Ross without him having said anything. This can be because they are ready for him to tell them something they don’t want to hear (which can happen) and are literally ready to pounce on him.
This makes Ross feel shit. He feels that people don’t listen to him or value his opinion, that he’s the black sheep and people are waiting to be offended by him. Not a nice place to be.
Ross has highs and lows, sometimes with in the space of a day, sometimes within the space of ten minutes.
Things he hates:
Too much noise, things not staying with all their correct components (toolkits, sets of any kind missing parts), getting into bed and then getting out of it, getting in the bath/shower and then once he’s in getting out of it, strong smelling perfumes, right wing views, religion, chit chat, opening something new (he wants it to remain new and will often keep tags on things), packaging not being opened correctly, peoples lack of attention to detail, rain if he’s outside (I hear regularly ‘never get an aspie wet!’) livestock, surprises, changes to his diary, un-detailed answers to any question, presents, birthday parties, injustice of any kind.
Things he loves:
His lawn, golf, politics, football, sportswear, sun, documentaries about the wild, organising finances, researching new products ( we bought a new sofa yesterday after 5 trips to Next to check the sofa out), business, keeping boxes, maths, his brother Matty’s football career, The Office, Ricky Gervais, Frankie Boyle, The life of Bryan, repeating jokes we have, repeating script from The Office and The life of Bryan,
Like Jane’s husband Ross has suffered severe lows and constantly battles with feeling outside the norm (although he likes this also) he too will regularly say ‘when you leave me’ or ‘just leave me, I’m mental’ these are both used jokingly, but said daily. The lows are extremely hard on us all and second guessing him sometimes can be difficult.
People often say ‘I don’t know how you put up with him’ or things to that effect. Well personally I find that a extremely offensive, because I think he’s class. He cares utterly about the people around him and if you need him, he will be there. He’s organised, he’s efficient and will never let you down. He’s honest, open and seeks out the simple things in life to make him happy. He’s a feminist, he sticks up for people and is great with kids (probably because they too are truly honest) He believes in things and isn’t afraid to stand up for his views.
Yes OK sometimes I will ring him and as I say hi, he says ‘I don’t want to speak to you’ not because we’ve had a fight or fallen out, just because at that moment he doesn’t want to speak to me. Or as was the case earlier, even though id sat down, was comfy with a blanket around me and a cup of tea, he felt the need to try and get me up to look at a bit of DIY he had done (taking offence to the fact he had done this for me and not seeing the scene fully or why I wouldn’t just get up)
Yes sometimes he watches endless clips of his brother playing football at Wembley or will start tidying up the house by cleaning the back of the fridge (completely ignoring the more obvious chaos in the house, that needs doing first) Or the fact it takes him about an hour to hang washing on the clothes horse, because it has to be in a very particular order. That he will tell me I’m putting on weight (only when I am) or that I look strange if he doesn’t like my hair, or something i’m wearing. His need to research things endlessly can be tiring, he can never just buy something or just do something. If he bought something and it wasn’t the cheapest/best quality product he could get, he would feel a failure.
The meltdowns over things we cant even understand can be hard work, but imagine living in a world like that. Where you literally cannot do anything because there is too much going on around you (telly on, kids crying, emails coming in, talking, smells in the kitchen)
Anyway, its not about excuses or me bleating on about Aspergers all the time. Aspergers means we have a lot to contend with daily, more than many will understand but I wouldn’t change Ross, I just wish life could be easier for him. I wish it was easy for people to understand. Its hard to watch people tutting at someone you love or taking his ‘ways’ the wrong way.
Look at it this way, its not personal with him. Its still his opinion, it doesn’t mean he’s right, but you will only get the truth as he see’s it and when you need him he will be there with a list and plan at the ready!
If I was in a crisis id want an aspie on hand any day!