Coping with an Aspie husband

For issues specific to autism / Asperger Syndrome.
Hello everyone who has posted about living with an Asperger's husband. It is fairly recently I can see mine has this. He is socially inept, too pliable and gets exploited, and lacks emotional response which made me feel there was something wrong with me. In short a very long marriage has been a deeply lonely one. he will not travel with me for example and I do pretty much everything on my own. After retirement he had a massive breakdown also due to other things and the past four years have been pure hell. People shun as they get scared of brain
things and the ignorance over this is still appalling as the brain is an organ. Functions within the brain that go wrong are just as valid as something going wrong with any other organ. There is nothing wrong with his mind, no dementia or anything like that but he has become a recluse and I have had to do everything as neither of us have family nor children and even so people have their own lives to lead. Coping is totally miserable as a. you have extra work to do and get tired and discouraged and depressed as well. Getting out is useful even though you have to come back tot he acute loneliness of it all. Now that I am getting my head around the condition I understand him more but I am still deeply lonely at the core - he will never change so I have lived my life thinking it is all my fault as one sometimes does. Then one wonders if something is wrong with oneself. The pain of this is like grief and I suppose eventually acceptance picks in but the acute disappointment and the lack of being comforted and supported oneself does not so one becomes worried that others are looking down at you. In short one lives with shame. This is silly I know but it is how I feel. Why haven't I got a normal husband? What did I do to deserve this? There are no answers. The hardest thing of all is seeing other supportive couple together, holding hands, being helpful to each other. It is like being in constant pain as it shows you what you do not have in your life. Reading this forum, however, means we join hands invisibly with one another as we know we are not alone in our suffering and perhaps it has meaning. I used to get so angry and frustrated with him. Now I am a lot calmer although occasionally I erupt. It is the build up of tension which is no good for anyone's health.

Te day to day caring is hugely draining so you need to treat yourself in some way. I ended up having a tad too much white wine which is not a good idea. Now I am trying to find outlets in writing, painting etc. and in the garden. I also try to see people even though they are thin on the ground.

it is like being blind or deaf really only the Aspie is emotionally blind and deaf and cannot "get it". They suffer too esp. the very sensitive chaps. It is funny how we want our partners to be sensitive but also out rocks, full of strength and solutions. Anyway my heart goes out to all of you out there. The suffering you undertake in this is beyond description.
Hi Sandra,
I'm replying as no one in the same set up as you has come along.

I totally understand how living with someone on the spectrum, affects your life too. You can't fight autism, it's easier to adapt your life to theirs and in doing so, your life be ones more limited. However S is my son, and your caree is your OH and this leads to different grieving. I watch my friend's children grow up, become more independent and my friends getting more free time whereas as S gets older there is even less support, he goes to bed the same time as me, and my free time becomes even less, not more.

There are carers on here who care for partners who have mental illness, dementia or acquired brain injury they will definitely understand your situation. Why not post on the About Caring thread too about caring for a partner.

Melly1
Hi Sandra,

Sorry to hear things have been so difficult for you. It's definitely not your fault!

Do you have anyone you can talk to about your difficulties? Have you joined your local branch of Carers UK? They organize events for carers where you might meet people in similar circumstances to your own.

Good for you finding healthy alternatives to drinking white wine a lot of the time!

Did you see this thread, just posted last month?

http://www.carersuk.org/forum/specific- ... rome-22602

I hope you meet someone soon, either here on the forum or locally to yourself who can share with you from their experiences and that you can support each other.

Gilli
Dear Sandra

My late husband was 'difficult', but it was only when I read an article some years ago about Aspergers, when it first started to become widely known (eg, Bill Gates etc), that something went 'ping!' in my brain, and I realised that he must be somewhere on the spectrum. Not massively, but definitely there. He just ticked so many of the boxes.

One very very obvious one was an intense need to be left alone! He HAD to have 'time out' to 'recover' from the stress of interacting with the world outside. If he didn't get those time outs he could get incredibly fractious and angry.

He also found it difficult to be emotionally demonstrative (unlike me - I come from an incredibly emotional family!), and I would find that hurtful. He was also very critical, again, very hurtful - and he could never see why I might be upset by it!!!

What I did, though, was to do my best to both manage his needs (eg, leaving him in his study, undisturbed, for long periods of time!!!!!) and also to try and 'override' his emotional detachment. I was physically affectionate, ensuring we sat in contact on the sopha, and me holding his hand, or putting my hand on his leg, that kind of thing, just in casual affection, or hugging him from time to time during the day. Sometimes he could respond, sometimes he couldn't (or didn't want to). But I persisted. I think it helped to help him relax.

But I do think, quite noticeably, over the years, he most definitely 'softened'. With us, having our (much longed for!) son helped enormously, and though my husband wasn't a 'huggy' dad, he was utterly devoted, and the two of them had a good, if quiet, relationship.

With Aspies, so I understand (perhaps wrongly?), the issue is not that they do not FEEL emotion, it is that they cannot quite understand it, and can't express it (or not easily) (they can express anger all right unfortunately! But that, I think, is a kind of frustration at the world 'getting at them'.....). I do think making them feel emotionally safe, being devoted to them, making them feel it's Ok to have feelings, etc, can help them.

Yes, we do have to make allowances - we have to have the relationship a lot on their terms, not ours, and accept that some things will never happen. (It took YEARS before my husband even put 'Love from' on birthday cards to me - and DECADES before he ever bought me a bunch of flowers!). One of the great saving graces of my marriage was that he did have a sense of humour that I could coax from him. I would tease him gently, and he would accept that - eg, I'd say things like 'Oh, go on, you can say you love me a BIT, can't you?'.....and because he was so endlessly critical, I would tease him by saying 'Yup, I know, it's my fault, isn't it, that you haven't a clean pair of socks - it's because I've hidden them deliberately from you you know.....'

But, as I say, I probably only had to cope with someone with mild Aspgerers, and that may make all the difference. But, all the same, if you 'smother them with love' and not expect them to declare their love back to you - yet trust that they feel it all the same - it may make life with him easier?

As for doing things together, again, I was fortunate that we did have some things we liked to do together, but very, very often I just went off and did things on my own, with friends, and left him at home in his study having his (endless!) 'quiet times'.

Now, sadly, as his widow, I do everything on my own, and I would give the world to have him back.

Kindest wishes in a difficult place, Jenny
Hi,
I am in a similar set up as you. Both my Son and Wife have Aspergers.
I like you am living a very lonely life, I am unable to tell them how I feel, as my wife in particular takes it personally and then the house becomes even more of an ice cave for the next few days.
We have no intimacy apart from the occasional peck on the lips. WE go to bed at different times and sleep back to back.
I did leave 2 years ago, but came back in January this year for the sake of my son, who was struggling with the idea of us being apart. However i am now struggling with being there again, but a sense of duty is keeping me from going because she only got the Aspergers diagnosis last year.
I fully understand how you feel, and i worry all the time about the life my son will lead.

I'm new to the forum so I'm hoping to find help and support from others in a similar situation.

Keep the Faith
Chris
Just wanted to add, from own experience on the other side of the fence.

Do not take your partners percieved lack of emotional response to heart.. it could well be the case that the presence of emotion (both their own as well as that of others) is too much for them to cope with, so the mind's natural defense mechanism is to appear emotionally closed off as to not appear vulnerable

We're all wired differently but the empathy is still there, some are just prevented from showing it
I'm lucky, S is affectionate and loving. He can't relate to if I'm ill and he can't see what is wrong i.e a sore throat, or tummy ache but understands ailments he can see a cut finger or a burn etc

ASD rules in terms of having to plan everythingready in fine detail, keeping social activities short, avoiding busy and noisy places, not doing things spontaneously, keeping home a calm place, always being aware of triggers and S's arousal levels.

Melly1
Hello everyone. Your replies have been so useful and comforting. Thank you. Apologies front saying so earlier but I was swept away incoming with my husband. He lives in his PJ's, but now watches TV.

He has a phobia about going out and that sensitivity to sound. Also he projects what is going on inside him and says it is the house not him. ie. there is no water we have to get out as the house is contaminated, heat, you name it. He is on medication and slow it seems to help.

Next week he is going to his brother for four days. Then the following week I have booked him to a health spa for two weeks as I need a break and he needs physical exercise. He is a large chap and lives in his head an dis also very clumsy, especially with opening packages etc. So I figured out that if he went to a good spa he could get treatments, swim, get some exercise and get his diet sorted as he uses his need for control on his stomach. It seems everything is now condensed in his stomach as he gets constipated but then refuses to eat. I use flax oil seeds and the laxative his doc suggested but his desperate need to control has rooted in the stomach. I know that sound odd but anorexic and bulimics also do the same for control.

I am hoping that the spa will retrain some of his mind and give him a few exercises so that we can join a gym together and go swimming etc. he simply cannot understand - or does not want to- that you need exercise esp. for the digestion.

I am getting more help for odd jobs etc. and that is great and I am going abroad for three weeks in September so he will have to cope. I simply need respite after nearly 50 years of this odd marriage. He is so dependent that when I went to a neighbours for dinner - three doors down, he panicked and this is someone who is more than highly educated.

Love to you all and thank you for taking the time to share your views. I will let you know what happens once he has returned from the spa. I also used a highly qualified health astrologer and she was an ace showing me his tensions and fears.
It is me again. My husband has been at the Health spa for five days now and says he has had treatments like massage but he lies - won't know until I see the bill. He is now in his room, as usual, lying on his bed and wants to come home and I said no as I need to spring clean and declutter and as it is a tiny house I cannot do it with him under my feel, depressing me every second so I said no. He is in a luxury spa, got driven there in huge comfort, and nearly cancelled which would have wiped out my savings. Selfishness personified. I now have to hire someone to make sure he gets exercise and swimming there otherwise he will repeat his behaviour at home. I told him absolutely NO. No way do you come home. You have to do your two weeks. God knows what will happen when I am abroad for three weeks in September but I have to get away as this has been going on for years and years. 47 years of it! Being a foreigner it took me ages to figure out what was wrong. But then one cannot "go home again".
I am rambling. It's scary stuff and so lonely but I am a pro active person and no way will he bend me to his will again. Thank you everyone for listening. Love to all.
Hi

I just wanted to say it amazing what you have done my husband has aspy, but we only been married 3 years together 5 years so I at the start of my life with the tricky little things but we have had a lot go on from his mother to disowning him, his 4 brothers ignoring him as if he wrong (he only defended his dad who he finally has a grate bond with and it because he forgave his dad and let the past be the past n his mum didn't like it some times you can't win) to the happiest moments of the day we got married him getting down on one knee. We all have are ups and down and I try my best and I don't always understand why he dose things the way he dose or why but I couldn't live any other way now. I couldn't imagine a life with out him it nice to see somone who been with someone so long.

I very lucky I have a very suportive family n network of people and also a best friend who also has a aspy husband and my husband and him have different variations of it so they work so well together. They also have someone to talk to if they confused and they help each other


I hope you get the respite you need, I need to book in time for some as I care for my husband and my best friend (she had a Stoke last year at 24 and has lots of anxiety problems and then down stairs issues but she still happy) and I take scare of my mum when I can as she has bad athrits and then best friends duaghter who has surspective spinal bifiter and deformats of the right arm. My life might seem like a run away train some times but it me n I would do any thing for them but they would do the same and when I was sick last year they proved that 10 fold I was in and out of hospital for 4 months on so many meds I dint no what was going on and i kept saying they all had loads n didnt need to worrie about me they all told me the same thing I been doing it for them y wouldn't they help me to show me that they r there for me no matter what.


Please no you are not alone

Heather :blink: :silly: