Disabled and married to an Aspie

Thank you everyone for your comments, advice and contributions.  As some of  you will know, having 'people' in the house is a big No No for some Aspies and this has been one of the main difficulties since I became disabled.  It was a huge struggle to get in a cleaner and had to involve a great deal of negotiation to  make this acceptable.   He could only bear it by using that day to go for the long walks which he loves - by himself of course.  That's how he recharges his batteries but before that whenever I tried to get in help he would be highly resistant, resent paying someone, resent the person no matter how nice they were but now he tells himself that the cleaner is here to keep me company while he's out.   I don't need someone with me all the time.  I would feel stifled too and I'm rated 7 on the questionnaire so definitely a people person!   The cleaner has become a dear friend and listening ear.  She does the jobs around the house which he hates and has given me back some autonomy in that I can get her to do the housework and ironing etc. in the way that I like them done so that I still feel I have some input.  My husband would not accept having anyone here if he couldn't get out of the way.  I think he  made himself good at DIY just because he hates to have people in the house.  He can't even stand the window cleaner who doesn't set foot inside!  Some of these things have become a joke between us and, as one of you has said, it's impossible to give a full picture of your life on these blogs.  

I did try to say that the Aspergers thing is new to both of us.  Because my husband and I came from completely different backgrounds we thought that was why we saw the world differently.  I come from a rough and tumble working class family where everything was out in the open and if you got up in a bad mood someone would say, "What's the  matter with you?  Get out of bed the wrong side?"   And then I joined an academic, middle class family.  I dislike generalisations but it seemed to me that they were pretty much the stereotypical repressed public school types.  There were no daughters in the family - only boys and a widowed father.  I thought that my husband would get something from my warm jolly family and see that things didn't have to be quite as cold as they were in his (for all kinds of reasons which I can't go into here).  So thinking for years that all we had to do - me, my family, our children, was to give him lots of love and he'd be o.k. and stop getting depressed was in the end proved wrong.  Knowing now that it is Aspergers has made a HUGE difference and we are still learning from each other.

 So, I appreciate the trouble you have all taken to reply.  My main aim remains the same in that it's the people who are in my position I need contact with the most so thank you Barnaby Crumble as we seem to be in a similar position and I will write more to you another time if that's ok.

 I don't need to be told what it's like for my husband to sit in a hospital with bright lights.  I know that already but if you are uncomfortable in that situation because of AS then how much more uncomfortable is it for a sick person, whose eyes have been dilated and who is waiting for hours sometimes for yet another injection in her eye knowing that this will be followed by 7 hours of agonising pain?   Is there never a time when the person with AS can see that their bit of 'suffering' is really out of proportion to another persons?  That's a big question....

Hi WinnieMay.

   Welcome to the club honey, I have M.S and my son has Aspergers, once we started on the rocky path to diagnosis for my son a lot of things fell into place with my husband. We have always said they are two pea's in a pod and this last year I have been free'd of a huge amount of guilt and confussion. Being surrounded (which is what it feels like) by Aspie people (husband isnt diagnosed but he'd pass hands down) can be very intense especially when I have myself to deal with as well. 

   On the down side I can feel very alone, I hate some days, it can be so rubbish. But on the positive side, he has never let us down, he works so hard for us, has a very obscure sense of humour-that I get!.He gets on with life, doesnt get phased by things and keeps this emotional wreck on an even keel. Yes he likes his own space and I like mine. It feels like we do our own thing and meet back in the middle sometimes, to be honest a husband that wanted to know what I was doing would drive me mad, he has made me become independent and I thank him for that.

       It is hard knowing that we have been doing virtually the same thing for the last 23 years and that will continue throughout our future but I have the advantage of doing all the things that I want and can and if he doesnt want to do them with me I know I havent got a sulking man at home I have someone thats happily doing what he wants. I know he loves me and some times I have to be content with just 'knowing' and not being told but thats ok, there are many ways of showing love and for him its the fact that he works so hard for us, that he will compromise some times to do what we want.That he trusts me with out question as I do him.

   Sometimes it can be tough but every relationship has good and bad days and I look at my friends marriages and relationships and there are a lot of things I would find stifling.

 I love my Aspie family with all my heart and I know they love me to in their own ways x

Hi WhinnieMay,

There are always going to be strong feelings and opinions on forums and this one is no exception.

I do empathise and sympathise with your situation and you defo have a right to have a moan and let off steam.

It is unfortunatly very hard to grasp what is going on in another person's life especially on the internet when we don't have the facts from both sides and as people with autism may struggle with other people's emotions.

I think there are some useful stratagies that others have mentioned, especially the newsletter type thing and prehaps getting a break from it by having carers in. I know that some people inlcuing myself are hessitant at the idea but it is a thought.

On a practical note, it is very difficult to pinpoint if the issues are due to your husband's age, autism or just his personality (just being a man) and therefore hard to give advice but I will try.

Have you considered couple therapy as this may be able to explain to your husband the emotional side you're craving for which you aren't getting.

And sorry to sound a bit sexist but it may be your husband may be one of those physical man types in the sense he's more inclined to do physical jobs like the things you mentioned than considering your feelings.

I'm sorry I'm not able to give you more advice but there are others on here who are NTs in a relationship with an Aspie. I hope they may be able to give you more in-depth advice.

By the way, look forward to the book  

urspecial.

Hi WinnieMay

Have you told your children and grandchildren (assuming their old enough) of the diagnosis?  if so, how have they taken the news? 

It maybe worth talking to your family regarding your feelings/ needs.  You maybe surprised by what you hear.

Kind wishes

Hi - I'm not autistic, my adult son is + he's not aspergers.  Maybe I can contribute something?  I think some people who contribute to this site will have experienced a lack of empathy or concern from someone significant to them at some point.  This inevitably hurts, especially if we v much need that understanding because of our circumstances, such as being physically or emotionally unwell.  When life is ok we sometimes don't need the same level of support and just get on with things such as raising children, going to work, socialising etc.  It's when things take a turn for the worse that we need more help and understanding.  Also, as you know, when we are ill, especially chronically, we can easily become isolated, apart from others who brightened up our day.  We stay at home much more, socialise less and our "world" can become small :  immediate family, tv, etc.  I don't know if all this has happened to you, but I know it can happen.  I read the other day about a woman who's paraplegic.  She was talking about her husband and son.  She said that some men show their love more by their actions than their words.  I think there's truth in that, depending upon the man.  There are other men who leave a relationship/marriage once a partner/wife becomes ill. That must be such a cruel thing to endure, such a terrible rejection at such a low point in someone's life.  Getting older means we look back more.  What have we achieved, is it enough, does it satisfy us, are we generally happy with those decisions?  We can dwell on how unfair life can be which adds to the misery and I don't mean that lightly.   We can be angry with ourselves for what we've missed and blame those closest to us. But we also played a part in that. These are very deep and strong emotions which take a lot of dealing with, so having a therapist should help with that.  It's coming to terms with things as they are or coming to terms the best you can.  You both have a lot to deal with each day.  You both care for each other, perhaps in different ways or by showing it differently.  If your health had been ok you might have decided to leave at some point.  Now you feel you're trapped.  Ill health always traps people. The person who is unwell and anyone in their immediate family.  It traps them physically and mentally.  To some degree you're both in the same position.  I don't know if you get any help from an agency so that you and your husband can both have a break - where someone such as a support worker could come in or you could maybe go out with them to somewhere you enjoyed?  Sometimes things such as that can make a difference.  I hope you don't mind me mentioning it.

From what I've read and what I can imagine, seeing my own behaviours with others, I cannot imagine it is that easy to draw conclusions.

As you indicate he has good sides, just the emotional/empathic side is not connecting well, but be honest - I keep reading feminist stuff about men anyway, as its branded about. So I guess what you are seeing its often hard to tell whether it's autism or just a man thing. And pretty amazing if he really does put up shelves!

But it isn't necessarily a brick wall. If you don't have adequate feedback as someone on the spectrum, from social exchanges, you are always "left in the dark" or only get part of the picture. So you end up wondering, seeing people's reactions - what have you got wrong?

The easiest way round this is to go into neutral. If you don't respond, while it leaves a gap/void/hiatus it seems harder for other people to take issue. Or you try to smile all the time, which works a lot of the time, until you don't pick up that someone's dog or gran just died, or a someone's child is sick, and you're still grinning inanely.

With AS you need replacement feedback for what you cannot get from conversation in the way NTs do.

Keep a diary of when you think he is puzzled about a dialogue, or when he is clearly playing neutral. You may be able to pick up a pattern where you can then interact periodically.

Would he, on the basis given you are disabled or unwell, accept a daily or twice weekly newsletter from you explaining any needs or issues he hasn't responded to? This sounds bizarre but if mutually agreeable it might help.

I suspect, and hope for you sake, its not that he cannot help or empathise, because abler people on the spectrum usually can. But I think people misunderstand "neutral" response.

If you keep being told off or complained at for responding wrongly, neutral inevitably becomes a safe option. But there is something which happens with married couples after a long marriage called jokingly Selective Hearing Deficit, where one other other partner goes into switch off mode, and just doesn't hear what's been said. It may be similar to going into neutral, and comnbined with AS may be adding to the problem.

I am not angry (why would I be?) and I am not judging you, I'm offering the other side.  I think if you have lived with someone with the same condition as me for 45 years, you ought to have learned some of the ways such a person expresses themselves.  This is factually, and in what some may consider a blunt way.  But it is also open and honest.  You get what you see on the tin, there are no psychological head games and ulterior motives with people on the spectrum.  I am just being open and trying to get you to appreciate his side.  I thought you were angry as you have blamed him so much.  All anyone can go on is what you posted.  Perhaps it is ME (Myalgic encephalomyelitis) or chronic fatigue syndrome, that you have, maybe that is why you say your condition is controversial.  If so, you have more in common with your husband than you think.  You might want to look at this, it's actually about lupus but there are a surprising amount of parallels with what it's like to have Asperger's and what it costs you to get through each day: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Any questions I asked were rhetorical, there was no need to answer them.

I'm sure others with similar experiences as you will come along and empathise.  You are of course entitled to 'have a moan' and stopping that is not what my message was about.

Thank you for your comments.  I feel that you are judging  me harshly.  I am new to this.  I was hoping for other people with disabilities or chronic illness who are living with someone with Aspergers to be able to share their experiences with me.   It's impossible to give a full picture right away.  I have tried to be fair to my husband by stating where he is strong and reliable.  This idea that he is disabled too is a new one to both of us.  Learning about Aspergers has made him happier than he's ever been.  He now says he realises why he has felt out of step with people and the world around him and that without me he could not have managed.  Knowing the reason for it has helped both of us enormously.  Initially he had been diagnosed with depression many years ago and I have tried to help him with that.  It is unfortunate that I have an illness which is in many ways contraversial and has no cure but I'm not going to go into that.  People see me in a wheelchair and see him looking fit and well and so he is known as the carer.  They do not see that I am his carer too.  Why would they?  He is deeply introverted and so does not like to talk about himself and likes to present a strong capable picture to the world.

I cannot answer all of the questions you pose because I feel that you sound too angry but you have misinterpreted my previous comment but you are entitled to your opinions.   I take care of my husband in every possible way and I always have done but sometimes you need somewhere where you can have a moan and not be judged!

I do wonder why you didn't take the choice to divorce before you got ill, and why you would spend 45 years trying to change someone or imagining that he would change?  You are blaming him for having wasted your life, but no-one forces someone to stay with someone else and if you think about it, you are using him.  You are not leaving him because he is your carer, people with autism aren't without feelings and he may realise that.  Yet still he stays.  Perhaps if you could read his mind you would see that he has remained stoic in the face of what must be a difficult situation for him too, and has not abandoned you.  He tells you he loves you every day, men who do that are few and far between and who's to say what's in his head when he says it?

You are placing an awful lot of blame on him, and it seems very unbalanced to me.  He didn't fool you into thinking he was something he is not from the outset, he gave you himself as he was.  No person alive is perfect, you admit he is reliable, hard-working, intelligent, funny, a good home-maker and a great grandfather.  Is it fair to entirely condemn him because other peoples' emotions confuse him?

This isn't about how your children or grandchildren would react, if you want to make a decision then you should make it.  But it would not be fair to do so without having sat down and explained to him in a concrete way first, what it is you have felt lacking in the marriage and the effect it has had on you.  Be prepared for him to be entirely confused though, as to why, logically, someone would wait almost half a century to speak up about it or to remedy the situation.  People confuse him enough, but that one will be a humdinger.

It takes two people to make a marriage, and marriage is about communication.  If you have tried to explain to him what is wrong (it doesn't say so in your posts) and he has ignored this or been unable to resolve it due to his condition, then at least you tried.  But have you?

Don't you think basing a relationship on someone being devastatingly good-looking isn't a reliable basis for a relationship?  You made your choice and you hung on in there for a very long time, despite him apparently never giving you an indication that he could offer you anything more.  Why are you blaming him?  You are clearly bitter and it appears seeing only your side of things.  It's unhealthy for anyone to put all their emotional expectations onto one person in their life, no human can easily bear such a weighty burden.  When you consider that it probably takes all his mental energy to cognitively process what he must do for your as your carer every day, to have the wherewithal to manage a great bedside manner as well is huge for anyone, letalone someone with Asperger's.  Why have you not regularly cultivated contact with friends who could offer you enough emotional support that you would feel the pain of his own lacking, less strongly?

If he has sensory issues, sitting in a hospital waiting room with you for your eye appointment would have been very hard.  He did admirably well to manage only some inobtrusive huffing and puffing (and he would not have been even aware of you thinking anything about it).  He may have been suffering from aversion to the fluorescent lighting, rattling trolleys, noises of other people, fear of the environment etc. and yet still he stayed stoically with you because it was expected of him and he tried to perform his expected role, no matter how difficult for him.

All of the above trait-related comments assumes he does have Asperger's, if he doesn't have a diagnosis then it's speculation.  However, I would advise anyone, that if their marriage made them that miserable, and if they had made every attempt to communicate that to their partner, that they make a decision based on what they want and need, not on relying on someone for practical help or what their relatives would say.  There are support agencies out there, such as adult social services.

I just wanted to put the other side to you, it's not fair to blame someone to that level for your own life choices and I am an Asperger's female married to an NT male, who could give just as many reasons why NT males don't make good husbands.  I don't mean to offend you in any way, but sometimes people get so wrapped up in their own negativity that they never see the whole picture.  I have sympathy for your situation, your life must be hard with a disability, but never forget, Asperger's (and all autistic spectrum conditions) are legally disabilities as well, only it's an invisible disability and therefore doesn't attract sympathy the way other disabilities do.

Hi Hotel california,

Thanks very much for your reply.  In the past year I think I've read every book I can lay my hands on and have learned much from them but I do feel that there is a huge gap for people like me who are disabled and reliant on an Aspie partner/carer.  I plan to write my own book but finding the energy is not easy.  I do have a very lovely therapist who I have known for over 15 years and she understands the situation.  She helped with  "say what you mean and mean what you say" which she realised I wasn't always doing because I found it so hard to express my needs to a moody man who went into shutdown.  I now realise how specific I have to be and that I can't appeal to his emotions or expect him to anticipate my needs.  It does make the whole situation more wearying because when I'm with people who are way ahead of me and OFFER help it is so much easier.  I do say with great regret that if someone had sat down with me in 1968 and explained that my moody but devastatingly good looking boyfriend/husband-to-be was going to make me feel lonely and unwanted; was not going to be that interested in sex; was going to need loads and loads of space; would not understand other people's emotions then I would not have married him.  I would not leave him now because he needs me as much as I need him and because at his best he is funny, reliable, a good home maker and what is surprising to those who know him - he is an amazingly good grandfather.  I don't think my children or grandchildren would forgive me if I left him but there have been many times when I have wished that I could.  If I had not become ill in 1980 then everything might have been different.  I could have had a job and a life outside of my marriage; I could have been more independent; I could have earned my own money; I could have taken off whenever I wanted to but as it is he has been the wage earner and is 'careful' about money so gets no joy from it.  My friendships have sustained me but when I was diagnosed with eye problems 3 years ago I was devastated at the thought of going blind and having to rely on this man yet again.  I have to go to the eye hospital regularly and he is impatient and huffs and puffs and does not say anything soothing to me to get me through it so I have had to be strong for myself and tell myself that at least he is there physically.  Without him I'd have to pay for expensive taxis.  There isn't anyone else.  My children live away and have small children to take care of.   It all sounds terribly sad but I'm trying to connect with others who have perhaps experienced the same kind of thing.  I have read some of the other comments and feel so sorry for the younger women - one of whom said that there was no honeymoon period and I remember feeling that when I was first married and wondering what was wrong with ME!   Now I know it wasn't me.  I want to say to those younger women 'get out while you can' because I wish I had.

Hi WinnieMay  

I have found books written by Maxine Aston and Carol Grigg (separate publications) to be really useful in understanding how the dynamics work in NT / Aspie relationships.  

Hope these help you.