Disabled and married to an Aspie

Hi Hotel California,

I didn't answer your question.  Yes our children know.  They are in their 40s and my daughter's husband works with Autistic children.  The grandchildren are too young.

People have often made remarks about H - asking me if he was hard to live with; his oldest friend said he was 'always a funny bugger'; his ex-boss described him as 'an awkward sod' so people were not surprised really.  I left the telling of it to H himself.  He tends to be a blurter so he blurted it out whenever he felt like it.  I talked about it quietly with my own friends.  His brothers don't like it and are sceptical.

My children have had to grow up from the ages of 8 and 10 with my progressive illness and disability.  My son-in-law once told me that my daughter resented it.  In the face of illness for herself she is brave and hates to make a fuss so I think she's had enough of it.  When H told her he was an Aspie she said "Rubbish" and then went home to talk to her husband and then she apologised as he told her things which made sense.

By the way, there was a typo in one of my comments.  I was giving the scores from the online questionnaire and for some reason I wrote 10 for myself.  I did in fact score 7 and that's the lowest for anyone we've asked to do it.  H scored 40.  He liked doing the questionnaire and felt good about it.

I won't post on any of your threads again.  I didn't know trying to help someone was such an irritation.  Goodbye.

It's beginning to.  From looking round the other subjects I feel that I'm in a minority and that it's mostly for people with Aspergers or parents of children with Aspergers.  I know that anyone can raise any subject if they want to but as I have said I really wanted some exchanges with another woman in my position.  There only seems to be one so far.

It depends on how far you are prepared to travel.  The lady we saw was 40 miles away and the next nearest is hundreds of miles.  We're not going down that route and £600 is still a lot of  money...

I understood you correctly when you said he's getting worse, I also meant the same thing, regression with Asperger's traits.

I joined the thread because I like to offer people help and advice.  I can stay off if it irritates you.

IntenseWorld,

Yes H has been getting help with depression for many years.  Manic depression (which everyone calls bipolar these days) is rife throughout his family.  When he said he was getting worse he didn't mean the depression.  When he first recognised the Aspergers and felt relieved by it he was quite elated but as with everything he comes down with a bump and his moods can swing on a sixpence.   If you mentioned CBT to him he'd hit the roof!  He does function adequately and has a very busy life so I must have given you the wrong impression on that one.

By 'getting worse' he was referring solely to the AS traits in his personality.  I've told him that that would be very unusual as most people seem to say that they slowly learn how to fit in and can reach contentment in advancing years.  

I found something the other day which made us both laugh as I've been having a huge clear out in the past year but I found some notes of when we tried couples counselling.  He hated it.  He can't bear 'therapy speak' and I'd written down a question he was asked: "How are you hearing this question?"   I think at the time he said "I don't know what you mean" but when we got home he told me that he wanted to say "Through my auditory canal".  

As I've said, I've got a lovely therapist and she knows us both very well.  She has a partner who does a course on positive thinking.  H has done it and found it very useful.  He had to do the work himself from a book and see the partner once a week for 6 weeks.  He liked him and found it acceptable.  When he went into a dip last week he said he immediately thinks of it to fight it off.  

Believe me we have tried everything that's going for both his problems and mine so I really just wanted to speak to people in the same position as me just to see how they feel and although I am grateful for the help you have offered I have been wondering today why you joined this thread as you are not disabled with an AS partner.  Please don't get me wrong and say "Why shouldn't I?"   I am just curious.

He is probably regressing due to anxiety and depression, that is what has happened to me.  When you get to the limit of your coping you burn out.  There is something colloquially called "Aspie burnout" and it's the result of years trying to fit in and cope in what feels like an adverse/hostile environment.  It's like that link I posted about spoon theory higher up the thread.  You use up all your spoons and in the end you are left struggling along with a small, rusty teaspoon which doesn't quite do it.

This is probably why you may feel like you are banging your head against a brick wall, he spent years exhausting himself trying to be what he was meant to (probably aware of where he was failing but not having the right neurology to know how to address it) and it's kind of crumbled in the end and once he hit depression on top of existential anxiety, he has slipped backwards and you feel that you are never getting anywhere.

He really needs help with his depression if he is to attempt to function adequately.  Is he on medication?  There is a therapy called CBT which may help him.

If he functions better, that takes some strain off you, so that even if he is not suporting you enough, at least you are not being so much of a carer to him.

Hi IntenseWorld,

I agree that NT men can be just as callous and I do suspect that others in his family are possible Aspies.  They all agreed to do the online test for comparison but none of them wanted to talk about it after giving me their score.   One of his brothers is much more 'typical' in that he is very fixed in his ways, likes a schedule, collects things, is fanatically tidy etc. and after he did the test he said, "I suppose that makes me socially inept".  He and H scored 40 and I scored 10.  Other members of his family and our two children scored from 17 to 21.  But this brother who scored 40 is much, much, more in touch with his emotions than H.  

As I said, I was lucky in that I had an exceptional father and brother and lots of uncles.  We're all big feelings people.  It's rather perverse of me to marry into a family which is just the opposite but you don't always think straight when you fall in love and in my case my husband was away in the merchant navy for the 3 years that we were 'courting' and so I don't think we really knew each other when he got back.  We didn't live together like couples do these days and for a while we only had each other as we moved from one place to another.

Well I couldn't help laughing when you asked if I'd written anything down.  I seem to have spent my life writing about it/him/us.  Of course, initially, our relationship was based on letter writing and he chose the right girl because I'm a prolific letter writer and the sad thing about that is that as soon as we came back from our honeymoon we had to stay in his parents' house for a bit until he took up his new shore job.  The first thing he did was to burn all of my letters even though I begged him not to.  I said that if he didn't want them I would like them to keep with all of his.  He wouldn't be swayed and all my airmail paper floated up into the bright blue August sky like black butterflies.  And then I had to paint a smile on my face to go out and meet all our old friends.  It shouldn't  matter that much but it did and I remember now because it seems symbolic of how things were going to be.

But yes I've tried to write things down but it doesn't work with him.  I learned from my therapist to make him sit down so that he's level with me and to make eye contact.  This was particularly useful in the early days of using a wheelchair because he was a nightmare when pushing me around (I've got an electric one now).  Everyone in this world is in his way and so he just rams them with me in the wheelchair.  After one particuarly bad incident my therapist told me to tell him to stop and come round and face me so that I can talk to him.   I have learned all the ways of speaking like 'it' makes me feel and not 'you' make me feel.... and to be clear in my requests so a mixture of plain speaking and lists seem to do the trick.  One thing he had to learn was that the wheelchair is an extension of me.  He probably hated the thing and what it represented when we were getting used to my disability.

A lot of books and AS people say that with age they find that they feel 'better' and more able to cope with life but H says the opposite.  He often says "I think I'm getting worse" even though he feels relieved to put a name to it.

No way does a private assessment cost that much!  You can get them from £600 and upwards but the amount you cite is ludicrous.  They were trying it on.  You can get a private diagnosis without a S&L assessment as idiosyncracies in his language and understanding will come out in the assessment anyway.

Look on here for what's in your area: http://www.bps.org.uk/psychology-public/find-psychologist/find-psychologist

It's a bit like workmen, you need to get more than one quote!

Hi Hope,

No, H hasn't had a formal diagnosis as such.  We started with the Tony Attwood book then saw H's G.P. who knew the book because his son was being assessed.  He has referred my husband to the NHS assessment team but it will be a 2 year wait by which time we shall be in our 70s!  We went to see a private counsellor/specialist who was very helpful.  We saw her a few times but it was some distance away and costly.  She said that to do a full assessment it would cost us at least £3,500 and would involve a speech therapist as well.   H is going for the NHS assessment although he doesn't himself feel that it is necessary.  Just in case anyone is wondering, I haven't pushed this on him.  I've suspected it for some time but didn't go down that road.  We discovered Tony Attwood's book together and H said it was like having a great weight lifted off his shoulders.  We've read other books too and for everyone he has said 'This is it'.

Out of interest, does your husband have a formal diagnosis of Aspergers, or is it a self-diagnosis?

If he has not been diagnosed, would he consider getting assessed?

I do feel sorry for you.  Having babies is a time when you need support.

The ironic thing is, that my husband (who is NT) has had many unsupportive and thoughtless moments over the years.  It isn't all H's condition, there will be other factors like his upbringing.  From what you say it's likely that his family members may have autistic conditions too.

Things take time to take on board with Asperger's.  You can learn the right way, but it might take a few incidents of things to get you there.

Have you ever written down something to H to explain it in B&W?  Verbally things don't go in well with ASCs which is why there are PECS cards for autistic children.  Maybe if he sees on paper how you feel it will help him take it on board.  You could even write him a sort of "instruction list" on what he needs to do in different situations, and Dos & Don'ts.  Hopefully eventually he wouldn't need the list.

With the tears, I know that is very hard to have a reaction like that, the reason is that he will not have known what to do with that type of emotional reaction.  I feel very uncomfortable when people cry as I don't know what to do (except my children of course).

Hi Hotel California,

I can relate to what you say about feeling unloved and misunderstood.  I now realise that my husband has felt that too and it's par for the course for an Aspie.  From now on I'm going to refer to him as H as it gets boring and tedious to keep writing 'my husband'.  I've put it in bold so that others can see.

And also like you I questioned my own instincts and intuition mainly because of our backgrounds which I have described elsewhere.  I began to feel like a dimwit because H was so well educated.  He is extremely pedantic and so I felt I was being corrected all the time but now I now it's the Aspergers - well partly that because all of his family are pedantic.  I don't know if it goes with the territory of public school education and learning latin.  Grammar, punctation, pronunciation and spelling and anything to do with language seems to really grate with all of them if it's not correct but I would say that he and his father were the 'worst'.  (It's in quotes because some people see nothing wrong in being pedantic.... but that's another argument).

Another thing I can relate to is the fact that you said that if you had known at the beginning it would have helped you both.  Absolutely!   An example of me seeing things differently happened yesterday.  The car broke down late in the day.  I got the Vauxhall dealer's number for H but he didn't want to phone.  He thought it was too late but I looked at the website and it said that they were open until 7pm.  I thought we should get the car booked in asap because I have several medical appointments.  H hates telephones!  Always has and he said he didn't feel ready to phone.  I insisted because there was no point in me speaking to anyone as I couldn't explain about carburettors or anything mechanical (H was an engineer).  I told him it was important to get the car fixed so he must do it.  I dialled the number and he spoke.  When he put the phone down he said "Don't do that to me again".  I asked him if his brain was all scrambled up and he said "Yes" and I said "I know that and I accept it but sometimes I have to override it when it's really important but I'm sorry you felt uncomforable."  Two hours later he said, "You were quite right to make me do the phone call."  This morning we woke up early and he took the car to the dealers at 7.30 in order to avoid the traffic (it just about made it).  When he got back he said, "I wish I'd taken it down last night".   Having pushed it with the phone call I didn't push it for him to take the car there and then but I wanted to.  Well, if it hadn't been for the AS then we might have had a row because I might have said "I've been telling you for ages that we need to get a Motability car which is leased and then we wouldn't have to be driving around in an old one which cost £1,000 to fix on its last MOT.  If you would listen to me sometimes we could avoid these problems."  I could also have said, "What's the big deal about making a phone call?"  But I know not to say anything like that because it's pointless and counterproductive.   His persona to the world is a strong, assertive, intelligent, practical man and most people who know us would find it hard to believe that very often he is quaking inside.

I can also relate to the story of your husband not coming to the hospital for your son.  As you say, it's the blind spot.  The first two times I felt badly let down by H was when I had our children.  I come from a large extended family and my mother had 5 sisters - all of these women are under 5ft tall but they had babies like shelling peas.  I felt fit and well when pregnant.  For the first one we had just moved from one end of the country to the other, bought our first house, I went into labour the same night we moved in.  (The baby was late).  I was full of optimism but I was in labour for 2 days and 2 nights.  The baby was stuck because she was back to front (not breach).  I was in an old cottage hospital run by a little Hitler with a regime of uncaring nurses.  It was a nightmare.  In the end there was a rushed and botched job of getting my baby out with forceps and with no anaesthetic for me.  I was badly injured inside and couldn't walk for days because of all the stitches.  I was also sleep deprived because the ward was full and noisy.  H was my only visitor as my family coudn't get there - no car.  I am not a very weepy woman but when H came in one day I burst into tears.  He gripped the end of the bed and said, "If you don't stop crying I will stop visiting you".  It was as if a bucket of cold water had been thrown over me.   We talked about it recently and he said "I just wanted you to stop".

I hoped for the second child that we would plan ahead more and get it right.  He had to work away quite often but I made him promise to be there for the birth.  He is not in the slightest bit squeamish and can watch operations on the telly and is interested in the mechanics of things medical.  8 weeks before the birth of our son he came home from work and told me that he was going away.  I said, "You can't.  You promised".  He said, "Too late now. I've said yes to my boss".  I had no-one nearby to help me or to look after our 2 year old daughter.  I had no phone.  He wouldn't have one put in.  Both of the houses either side of me were empty.  There was no call box nearby.  I had visions of hanging out of the window shouting 'Help' if I went into labour in the night time.  My family caught buses to make the 40 mile journey to help me whenever they could.  The birth was easier but of course I didn't know what to expect after the first experience.  What I later found out was that H never even told his boss that his wife was pregnant.  I thought that men like my father and brother would say "I can't go away now.  Our baby is due in 8 weeks and my wife had a terrible time with the first one."  I didn't realise that H would NEVER say anything like that to anyone and when he became the boss himself much later the women in his office used to say "He never tells us how you are" because they did know eventually that I was ill and disabled after seeing me at a Christmas do.

So there I was with 2 beautiful children wondering what to do next.  I did truly believe in working at marriage but I did get very depressed as I was on my own a great deal.  H thought he'd find us a place to rent straight away but it took 6 months because it was a holiday area. People thought I had post natal depression and that might well have been a factor but I knew it was because I couldn't believe what was happening nor why he couldn't understand that the right thing to do was to stay at home until after the birth.  He actually left on our daughter's 2nd birthday without batting an eyelid.    I understand now, more than 40 years on that he thought he was doing the right thing with his career so where I thought he was being selfish and inconsiderate and uncaring he thought he was being a good husband and father.

That's made me feel sad so I'd better go and think about something else....

Hi Hotel California,

Thank you for your comment.  I will reply later today.

Intense World - your advice sounds good in theory.  If only I had a 'Nancy' to call on!  As I said in a previous comment, people are too busy with their own lives to be able to spend hours with me at the hospital every month and it seems that even my most confident of friends do not like the idea of driving our adapted car and dealing with the ramp at the back.  One friend came with us a couple of times after we had supported her through a bad patch in life and she took time off work.  When she was there my husband was a different person so it made me think he should have married someone like her!  I'm joking of course but may be she just was able to divert him more than I can and also she wasn't the one waiting for a needle to be stuck in her eye so she didn't need cheery chat for herself.  However, if it's the bright lights of the hospital or just impatience that makes my husband grumpy when he has to wait with me he certainly wasn't affected on the day she was there.  I've tried taking crosswords for him to do as he likes them but that was 3 years ago when my treatment started and before we knew about the aspergers.  I couldn't look at the crosswords and came to a realisation that I had been trying to do these flipping cryptic crosswords all my married life just to please my husband and his family because they all love them and through one particularly crass remark of his when I suggested an answer to a clue I said, "That's the last crossword I do with you".  And I haven't and I don't intend to and I think what a silly woman I have been all these years trying to do something that I hated just to please.  When I told my therapist we both had a laugh about it because she had done a similar thing when she was young with her parents and we both said what a relief it is to let something go that wasn't pleasing you.  And now the upshot is that my husband doesn't do them any more either!  I used to cut them out for him and then I realised I was treating him like a child and making sure he had a 'toy' to play with while we waited and waited and waited.  Now that he's got to get them himself he can't be bothered to even buy the paper.

Things are a bit better at the hospital now because we have got to know the routine and the staff and he's getting used to it - so am I.

As for complimenting him about jobs - I do that all the time but it still doesn't make him accept help.  It has to be a fait accompli when I have to dig my heels in if I find it necessary.  He's someone who needs loads and loads of praise because he didn't get any as a child.  When he comes in from his long walk he 'demands' my full attention no matter whether I have my sister or a friend here.  My sister said that he's like a child who has just come in from school and he has to tell me every butterfly and bird he has seen - which is nice and the day he goes for his long walks is his day to himself and it's my day for having my cleaner and friends/relatives if I want but you can see that if someone is here he doesn't like it.  For many years my sister thought that he didn't like her but she understands now that it wasn't personal.

Yes I do Skype.

As for contacting the council - our neighbour works in the very department you refer to and sends us emails about respite care etc.   My husband flinches at the very idea but I have thanked her and told her it's nice to know about these things.  My husband has been told about carers meetings etc at our surgery but it's just not for him.

I can see that you are trying to give me practical advice and your input is useful. Thank you.

Hi WinnieMay

I was in a relationship for an aspie man for a long time.  We have two sons both with aspergers.  Like you I had no idea that my ex had aspergers whilst we were together and I did feel unloved and misunderstood.  This eroded my self esteem.  At the time I was trying to understand the behaviours of my children and being guided by their father, who unbeknown to me at the time was mind blind, so for years I questioned my intuition and instincts.  I totally get what you say about if you had known how tough it was going to be you would not have married him.  For me if I had known at the start that he had aspergers it would have helped us both.  We had a lot of miscommunication and misunderstanding going on.  Parenting together was fine whilst the children where babies / toddlers.  Once they had a will of their own things disintergrated.  He left more and more of the childcare to me whilst he was out either working or pursuing his special interest.  I remember one instance where our youngest had to go to hospital for an op. He went to work.  His mum ended up coming to the hospital to support me.  At the time I thought he was being totally selfish and I was extremely angry that our son would think his dad didn't love him or want to be with him. If I had known he had aspergers I would have realised that he was unable to see his behaviour from our sons perspective, so being angry towards him just confused him and achieved nothing.  It is a weird place to be when you have you try to get your children to understand the behaviours of their father and vice versa when both sides struggle with putting themselves in another persons shoes.  

You could tell him that you will get someone else to take you (when and if that's a possibility) because that's what you want, if he thinks you're saying it because he wants it that might be the sticking point as he then gets defensive.  If you tell him, "do you know what, I'm getting Nancy to come with me today because we need a catch up and there is this knitting pattern I need help with that she is an expert on." (e.g.) that might work.

Also, perhaps if when he does a job around the house, you commented "that's great that you did that, you are so caring" and he might not tend to assume the worst if you get other people for other things.

Distraction often works well with autistic people, so if he is focused on another element of  the reason he might not perseverate on the one he usually does.

Can you download Skype and talk to friends and relatives that way?  That will make him feel you are not alone and he is not abandoning you if he needs to go out for a walk.

There is always the option of you getting an assesment of yourself from adult social care which could bring official respite (you contact your local council).  He might not have any problem with that as it's something official which you are entitled to irrespective of whether he is able to do things for you or not.

Hello Longman

Just to respond to your suggestions about a diary and a newsletter.  I do keep a diary and my husband hates the thought of me writing about him!   If I gave him a newsletter he might skim read it but then he'd toss it aside as a joke.  However, he does like lists of jobs because he likes to tick them off.  He prefers a written list to a verbal request as he hears most requests as orders.   He had a bad time at his public school and has a hatred of authority.

Hello IntenseWorld,

You have explained it very well.  Thank you.

For anyone else reading this - please don't think that I'm nagging at my husband in these situations.  I wouldn't do that and I do try to understand.  Sometimes at the hospital he has to go out for some fresh air because he also hates getting hot and he's too hot most of the time which is why he prefers winter.  He can also go for a coffee whenever he likes or read a magazine.  I can't do these things so I listen to my radio with earphones until I get called.  

He is a highly intelligent, very assertive, very strong minded man and in my weakened state it is often difficult to find other solutions like respite care.  He doesn't want to be judged as uncaring and would resent it if I told him that I'm going to get someone else to take me.  This has been the case since I became ill.  He doesn't want people to think he can't cope.  Anything that diverts him from his own path then makes him depressed.

I'm talking about problems here and not about the rest of our life which is not a problem because I don't need help with that.  I just need other people's input on how to cope with the problems.  I'm not daft enough to stay with someone who made me miserable all the time.

There was a mention about friends - I've always had lots of friends and still have some from primary school days but as you get older they die, get ill themselves, have grandchildren or elderly parents to take care of, move away.... all kinds of reasons why they can't come round with a casserole and some soothing chat.  Nor do they have the time to sit in a hospital for hours on end every month.

I am also lucky in that I am not housebound all of the time.  When I can, I go and sing in a choir and meet up with friends for lunch but again this always depends on my husband giving me lifts because we have an adapted car to take my electric wheelchair.   I have also spent 3 months in Australia with my wonderful sister-in-law who knew how to take care of me.  I thought it would be a relief for my husband to have that time to himself but he was miserable without me.  As many people have said about him - there isn't much in the middle.  He's either the comedian in the middle of the room with a loud voice or he's skulking near the exit anxious to make his escape.  He either wants dead silence in the house or he's blaring out loud rock 'n' roll and singing at the top of his voice.   I've just read 'be different' by John Elder Robison and he explains this very well.

All I can tell you, is that for someone with an ASC, when you are overwhelmed you lose all logic.  You can feel panicky and out of control and you are simply unable to think about anyone or anything else, it's all you can do not to meltdown or shutdown (and he has shown remarkable self-control if he has avoided either).  It's not being selfish it's an actual brain difference where you don't have the wiring to be able to process in the same way as an NT can.  I know this is probably impossible for you to understand because your brain is not set up to process that way.  He won't deliberately be ignoring or refusing to accept you have difficulties in any given situation, his brain just doesn't allow him to.  That might be an unpalatable truth, but the only comparison I can give to try to get you to understand is imagine a baby or an animal that just reacts at a basic level and can do nothing else.  You can't control it, the brain goes into overdrive and takes control.