Support for partners of those with Asperger's Syndrome - suspected or diagnosed :)

[Joanna112]

Hi. After many, many years of mutual misunderstandings and miscommunication and near divorce, my husband was diagnosed early this year with Asperger's Syndrome.

In the interim years leading up to diagnosis we (well … I) almost gave up several times. Talking to close friends didn't work. Traditional marriage guidance counselling didn't work. The never-ending circle of endless arguments around the same issues led me to lose my self-confidence, I suffered from depression and severe loneliness. I turned to the internet to try and find others in the same situation, someone to understand and talk to.

Whilst I did manage to find some discussion threads on a few different websites, they were hard to navigate back to and many were very negative. We were put on a waiting list for diagnosis in Exeter. After six months we were told the waiting list was TWO YEARS! I decided that, particularly in the early stages of suspecting your partner has AS and in the lead up to diagnosis as well as afterwards, the greatest support I could have would be connecting with others in the same situation. There seems to be plenty of support for people on the autism spectrum (which is GREAT!) but little to none for their partners.

I believe a website that is JUST for NT partners is what is needed.

I recently received some money which will enable me to set up just such a website. I want it to provide discussion groups, support networks, recommended reading, personal testimonies, a 'what works' and 'what doesn't' page (I have a few!), names of AS specific counsellors.

I'd really appreciate your thoughts on the site, whether you think there is a need for it, what should be on it etc. It's early days in the design but it would be great to have input from people who might use it once it's up and running.

Thanks so much :)

Accidental, your description is my life.I feel very isolated as H, my stepdaughter & Ds are likely to has aspergers.At times I feel very lonely and its hard work.

H can be a very kind person but he had an abusive mother, his father was withdrawn (suspect he is aspergers) so there is a lot going on.
I am at the stage when I realise I will never be able to get emotional support from H and the realisation is frightening.I worry about when we get older will it just get worse.

Although my DM left my DF 34 years after they married, they have not divorced and are still friends. And DF has mellowed a lot, he is better with other people than he used to be. Granted, there are still oddities and misunderstandings, and some of the reason why we get on better is because of my (self-diagnosis) of us both. And tbh I don't know if he's any better at emotional support, at least explicitly. He is kind and he does care, however I still find it hard to share a house with him for more than a few days.

Of course, I am speaking of a father-daughter relationship. I wonder, if you get on well enough with an AS partner that you can say what you want and don't want, in terms of actions and words, whether some might incorporate that into their "relationship rules", and whether that would be enough?

Rover clover - Relate would be great, we went once but DP was quite obstructive and didn't want to go back, he just told them it was all my fault. I feel that he needs help and so going alone wouldn't necessarily help, also worry about the cost.

Things have got worse today, DP told I have week to get a solicitor! I am really scared. I have a Dr appointment tomorrow, I did some research and there are many similarities with Aspergers and Bipolar. At the moment he is totally convinced that I have been unfaithful and he hates me. Not sure where I stand here divorce wise. Whilst he is thinking like this he will make sure I have nothing. I dont want to fight over money and children, I love him! He won't go back to doctor now, so angry with the dr he saw las week. I also spoke to my sister as DP has accused me of fooling around with her husband. She knows that it's ridiculous and says that her husband would be mortified if he knew. She has some knowledge of mental health and his past behaviour so it was no great surprise to her. Last year Dp accused me of seeing someone at work and actually phoned my manager about it, I would be so embarrassed if he ever knew.
Feeling pretty helpless know. Hard to function with ths going on.

I would be weary of going to Relate with a partner who has AS. Their councillor usually haveno training in AS and my understanding is that it usually leads to more issues than anything. Esp when you end up with one person being very calm and down to earth and 'rational' from the outside and the other is very emotional.

Counselling IS a good idea though but you might want to find someone with more specific training.

RoverClover, Lucia, TAE, Newlife … please hang on in there if you can. Every single thing you are writing is exactly what I'm trying to address. Oh gosh … I feel slightly overwhelmed because you (we) all need a massive boost and some love and support and I can completely feel that in what you write.

I don't have the answers as all our DPs are different and have different strengths and weaknesses. Btw, I agree with TAE Lucia - your GP is a complete ass. What a ridiculously ignorant wazzock. So many AS people I know are business people. Successful business people at that. My DH is for one. His AS actually helps him to do his job. The fact he doesn't empathise or care two hoots is the reason he's the one called in to fire people. Not that that's the entire reason he's successful obviously … but it can work for them to a point.

Buda is right that if you're going to find a counsellor, do try and find one who has a REAL idea of what AS is. Chances are you know more than they do because you've been googling away on the internet for weeks, months or years . On this … I just went to the BCAP site (British Association of Counselling Practitioners) and typed in my postcode, 100 mile radius, and Aspergers Syndrome - just to see how many would come up. Three. Three people had it in their 'specialised' blurb. So I rang all three. Not one had a clear idea of AS and admitted they'd skimmed the subject. "How many clients do you think you might have seen over your time as a counsellor who possibly had AS?". One of them said she did think it was a possibility with one couple - over 15 years.

So … I am already in talks with the BCAP, counsellor training associations etc to suggest that counsellors who say they have REAL training in AS actually DO. We will get there.

My DH and I are going through a really horrid time right now and he is still constantly blaming me for absolutely everything and I'm exhausted b it all. All of you, your comments which so resonate with me, are the reason I'm still here. So big hugs to all and thank you!

Just hearing all of you is a real boost.

I have already started to comment directly with him. No more vague notions or inference made. "you need to do this because..."

Where do/can we go from here? I don't know but I was ready to pack and go the other weekend and I'm still here! Now, I am working out if we stay married but live more separate lives so I gain support and energy from outside influences. I need to get some help and fast from someone that can help him understand in a format that he can understand. At the moment he says "all I need is for you to make me lists then?" and he cannot understand how draining that will be AND I still get nothing back. I am so drained, but I have found relief in knowing that I'm not alone and I'm not going mad.

Lucia22, that sounds horrible and I've never been told to go. It really sounds that he has fixated on this one paranoia and it is eating him up inside. A psych assessment would be my suggestion and that's only because we get Ed Psych in to assess, report and detail how we structure a child's day in school.

Joanna112 - ideas shared, problem (hopefully) halved????? Or at least diminished slightly! Can we help????

RoverClover - absolutely :) I'll pm you.

Rover do you know what you need?

So often what we think we want is for them to know without being told. Unlikely I would imagine. However, I do think it might work to spell some stuff out e.g. I would like you to ask me about my day, and then listen (and perhaps comment).

As a meta-wish - I would like you to remember what I'd like, without having to tell you again.

Well, saw the dr last night. He agrees that DP should not have been dismissed by original dr last week. He has offered to do a test, just have to get DP to agree to go and do it now. Dr doesn't necessarily think that DP is showing signs of aspergers but thinks its a good place to start as there s clearly a serious issue there that he needs help with.

DP is calming down. he says he cant afford to divorce me. Seems to want to pick up where we left off as if nothing has happened. I feel emotionally drained and struggle with that although it is nice to get back some normality to the house. We talked last night and he still thinks his perception of my behaviour is correct, that he doesn't like me flirting with men but is going to have to live with it. He doesn't want to attend any more family gatherings. Because he still seems to think he is ok I haven't brought up the subject of a test yet but will definitely try to get him in for it.
This thread has helped me so much. I am starting to think differently about the situation and how it s going to affect e future. I am trying to be more patient and not to expect DP to know what I want him to do or say but be more direct with requests. Hearing how others cope with this situation makes me feel more positive. I know I need to think about things I can do to help me cope, maybe see my friends more and not be afraid to admit what's going on to them.
I think accepting that DP has a problem helps rather than getting frustrated and angry that he can't just be 'normal' and behave like everyone else. I can't excuse his behaviour over the last few days and brush it off but I am trying to see that he is not in control of it.
The paranoia is still a big issue that I am aware of and really needs addressing.
However he is diagnosed and whatever help is on hand to him, I will certainly be looking for contact with other partners coping with similar situations.
Rover - I think, like you said, maybe dong things for you, not waiting or expecting him to take the initiative is a good first step. Try to lessen the frustration and accept the way he is. Would he be bothered if you went out on your own etc. My DP is different n that he is quite hands on with he kids in some ways. He does cook at home but doesn't help at all with anything else in the home, garden, car etc and can't see why that annoys me. Somehow, going for a run or reading about house prices online is just as important. Getting some sort of counselling for you could help you cope better with him a home. Life without my DP is not a more appealing option than one with him (at the moment) but can see how it would be for others. You do need to do what you think is right for you an your children.

Hi, I know this is marked as a zombie thread....but I found it really helpful to read through so thought so don't feel too bad 'reanimating' it rather than starting another one to die out eventually.

I wonder if there was any progress on Joanna112's proposal of a website specifically for support of NT partners?

Are there still people around at the moment for mutual tea and sympathy on this thread (or any other MN thread if there is one I've missed) for NT partners?

I am in a new relationship - we've been together for 5 months. My bf/dp does not have a diagnosis of AS, as he has read up about it (a little at least), figured that is who he is and that there's no cure so what would the point of a diagnosis be. He 'came out' to me about a month ago during an emotional (for me, anyway!) argument, which started off about nothing in particular but ended up about how I felt he wasn't supportive/wasn't listening/didn't care etc. Since he's told me about his suspicions, a lot of things have fallen into place the more I've read. Our relationship is going really well now, overall, but of course there are aspects that are challenging.

Before I go off into specifics - are there still MN NT partners out there that would like to repopulate this thread?

I have been in a relationship for two years with an AS. Two of his daughters also have AS. FRUSTRATION is the only word I can use to describe it. We are close to breaking point in our relationship and it's not what either of us want or need. I find his behaviour very trying and I am one of the most giving and tolerant people (so I am
Told) sometimes I just want to scream. I feel bad about this and very selfish but have come to realise that it's about me too. Coping with AS from a NT prospective is to say the least demanding. I believe I have somehow forgotten that I also have needs that are not being met. In my opinion this is destroying our relationship. From the moment he told me he was AS I read up on it as it was alien to me. It certainly explains the 'unusual behaviour' but I still struggle to see where our future lies. In one book it stated "no expectations, no disappointments" just wondered if you all agree with this. We all have needs and expectations surely and I find it difficult to state exactly what I need from him without sounding like a nag. I moved 50 miles to be with him and the isolation from my friends and family probably doesn't help out situation. I am
Considering taking a little 'me time' but again struggle with this not being read as selfish. Any thoughts or comments greatly appreciated

I can relate to these posts. I have been in a relationship with my high functioning ASP for over 5 years. There are some challenges but on the whole, we're very happy.

Of course, he has his meltdowns & funny moments, which I can sometimes soothe away. Othertimes, I just give him some space to work through them on his own. If I'm feeling emotional & perhaps less tolerant than normal, things can get on top of me a bit.

We don't live together (and I think this helps us both to get the space we need) but we see each other often & can happily go on holidays together & have a very nice time. I know I'm very tolerant and patient by nature which helps a lot - if I was less so, then I know I would struggle more.

I used to get hurt by some of the things he said (just him being brutally honest & not getting that sometimes it's not necessary to say exactly what he's thinking) . We joke now about his "edit" button - or lack of. He's not daft though and does have reasonable levels of sensitivity and empathy
so he gets a lot of what I'm saying.

Even with the challenges, he's still the same lovely man - thoughtful, fatihful, gentle and considerate. I truly feel very lucky to have him in my life.

Hello I am sure that my partner also has aspergers. When family are round (which is infrequent.) he will disappear several times and will be found playing his racing car game or will sit with his laptop looking at ebay. He is frequently on eBay. He enjoys watching the same films that he knows by heart and never ending episodes of top gear! When out around the village he collects the rubber bands that the postman drops, even stopping in the middle of a run! He occasionally gives me eye contact but not sustained. After my son has been with his small dog all the throws and cushion covers have to be washed even when they have not been touched. Although he has a high powered job and is a great business man and manager of people. Please tell me your thoughts, I could go on. I suppose I need confirmation for when he withdraws and provides no emotional displays whatsoever.

floppywillow I'm not sure if your partner has AS as you say that he's a manager, businessman.

In my personal experience AS sufferers are not team players or able to communicate effectively with others and I presume the job roles you mention would entail these skills?

Hello,

Just popping in to say that I have Asperger's Syndrome, and so does my husband. I think, as a woman, I am softer and more sensitive, and as one of many kids, I learned to socialise quite well. My husband is an only child and I do think less is expected of males generally. We women are always expected to be social and accommodating, so I think I am better socially than him, and more empathic. I do have practical disabilities such as co ordination, sensory problems and issues with my hearing (always need subtitles on the tele.) Things have been extremely difficult with my husband, though, as he has always lacked sympathy and the ability to empathise. He is also extremely 'funny' about sexual matters (long story and not entirely related to AS.)

Anyway, I just want to say that I can see both sides of your situation. If you would like to ask me anything, then go ahead :)

P.S: My husband is also a businessman. He is curt to the point of rude to people, and I know he has been 'spoken to' about it. It can be embarrassing when he does it to others and upsetting when he does it to me. He is very good and effective at what he does, though, so it hasn't caused him much trouble.

He hides behind me socially and always has, though. I do like people, and like to socialise, but I have limits and feel very drained after. I need a lot of alone time. What I am trying to say is that AS really is as different as the individual. There are a few common traits, but they vary from person to person in intensity and some traits show up in some people and not in others.

Thank you for your quick replies as yesterday was one of those hard days. It is funny as I am a teacher and are always able to recognise any ASD children very quickly.
Nickyangel it has been noticed that he can be abrupt or not pay the person talking any attention. This does not detract from the fact that he is very valued in his company. He does sound a little similar to what you have mentioned about your husband.
Bacon and advocado he is able to relate to others on a business level as at work it is very logical and it is done his way and no emotions are involved.

Floppywillow: Does he have to eat certain things all the time? I guess I am also a bit guilty of this, but my husband gets funny if there is not an exact brand of orange juice with no bits in in the fridge. He either eats only cheese and ham sandwiches for his lunch, or, in the past, he drew up a schedule of what I must put in his sandwiches each day...

When we go on holiday, he makes an itenary of every single day. Even for the four weeks we were in his country. It is not vague - he writes down times and dates. He researches entry fees. In a way, this is quite comforting knowing he has it all covered, but I have never been allowed to spend a day just wandering, on the beach or whatever.

He doesn't interact much. I mean, he isn't rude as such (insofar as to say that I know he isn't doing it on purpose) but nor does he talk a lot. We have often argued because that is the only way to get him to look up from his internet.

He also hoards. If you have ever seen a film called Mozart and the Whale, there is a scene where the woman tidies the guy's filthy flat. We could have re-enacted that when we met. As an example, he started complaining and whining when I threw away some tea that had gone off in 2005. This was in 2011. He won't allow me to get rid of useless things, even ugly things that have no purpose. He puts knick knacks on every surface (I hate ornaments and tat, mainly because I have to clean them!) He buys food and then won't eat it, because then, he says, he won't have it any more (??)

Of course, I have my own little ways but I think he was brought up very pampered and unchecked, whereas my parents had five kids and made it clear that I was still expected to behave myself!

I should add that he is very educated and successful in his career. It is just around the house...

Please may I join?

I have not been diagnosed with AS, maybe just have traits, but to list a few:

Poor eye contact.

Poor co ordination/clumsiness (the xmas tree stays in the conservatory, so I don't knock it over, or fall into it for example).
Always banging my bloody elbow on door handles grrr.
Poor hearing in a crowd, people get impatient with me for this

Other sensory issues, somebody putting hand on my shoulder from behind for example, and I jump about 10 feet in the air.

Have to do things right first time, not many mistakes made.

Withdrawing. People complaining that I 'live in my own world, or bubble.'

Strange to actually see it in black and white. I need to tell my colleagues really, I think some of them may have noticed.

Sorry, meant to say thank you to the poster for reviving (?) this post?
Very cathartic

Thinking about it he does go through phases, he says he does not mind but actually always has to have certain food types. Recently went through a soup phase and at the moment glazed gammon. If I make sandwiches for work usually ham and cheese.
When we go away he likes to know what we want to do and will have a list, along with his updated holiday item list. He gets annoyed if I do not make a list of holiday clothes for me.
My sister and her family are arriving today and he has mentioned he might go out on his motorbike. He does interact if he has something to say or he is finding it interesting. If he is asked a personal question he gets uncomfortable. He does not like sharing information about his life.
He does hoard mainly bike magazines and clothes that are ancient but he just might need.
It is good to hear that it is not just me though.

A few days ago I posted a thread to ask if anyone would share ideas how to cope with AS dh/dp then someone suggested that I come to this thread. After reading some of the messages I kind of feel slightly relief. At least I am not the only one in the world finds it hard to cope. The biggest problem is that I feel even more lonely when dh s with me than when I am on my own! When we were younger I was very busy with work and studies and on business trips often. So physically and mentally my energy was focused on outside of the house. I think he was comfortable with the fact that I stayed out of his house / his territory. Especially he never let me make decisions, suggestions, changes to HIS house anyway. So I never develop any interest in making the house much of a home. It was his house to start with so it s his house and it will always be his house. For many years I was longing to move home. At the beginning dh told me that he tend to move house every 6 / 7 years anyway. But 23 years later today he still lives in that bloody house. After I lost my job 9 years ago I became a sahm I find life at home s intolerably lonely just like a form of mental torture.

I am coming to the conclusion that my DH might have high functioning Aspergers. He operates in his own little bubble and doesn't seem to have any interest in other people, not least me. Conversation is like pulling teeth and leaves me so frustrated. He often ignores me or just nods at best, there is no back and forth. He will sometimes even leave the room while I am mid flow and then wonder why I am angry.
That is another massive problem, he can't recognise any emotion other than angry. Every emotion I express he labels as angry (which incidently then makes me angry!). I think that he uses this as a convenient excuse for him then not to engage with me.

He forgets much of what I say or doesn't properly listen. We have had many, many arguments over that. Actually we argue about the same things time and time again and all our arguments follow the same script. I say argue, he usually says very little while I get more and more apoplectic. His contribution to arguments is usually blanket denial or total lack of responsibility for anything and usually an inappropriate focus on semantics. I am thoroughly exhausted and feel like I am going mad at times. It is at the point where I dread having to communicate with him because it will often end up with a row or frustration. He is a very intelligent man, I am a good communicator so I really don't understand why it is so difficult.

He makes the same mistakes over and over again. He is always late, he is clumsy, he doesn't think things through. It feels like being married to Frank Spencer at times.

I have tried spelling things out to him about what I need, he might try for a few days and then we are back to square one. I really don't want to have the kind of relationship where I have to tell him in painful detail how to behave, or what to say. He is always telling me to tell him what to say. I hate it.

In the interest of balance he is the kindest man I have ever met. I know he loves me in his own way, he is affectionate, he is a hard worker, he doesn't moan (in fact nothing seems to bother him), he rarely loses his temper & is never unkind. The problem is that he just gives so little of himself emotionally and we have this complete block in communication. I feel that we are never on the same hymn sheet and he seems to enjoy that.

We rarely laugh because he doesn't say anything much. I used to have a good sense of humour but you need someone to bounce off.

I am so lonely and am turning into this nasty, angry person. I am saying more and more hurtful things to him (often just to get a reaction or because I am so utterly frustrated). He doesn't deserve that but we are stuck in this cycle. I feel that my points are valid, I raise them, get little response, never mind any resolution (in fact I 99% of the time feel worse after speaking with him), I get frustrated and nasty and then all of a sudden it isn't about him being unreasonable anymore it is about me being a nasty unhinged cow.

The future is frightening. I feel like every row is bringing us closer to the end. I also feel afraid of a future where when the chips are down he is simply is unable to step up and offer the emotional support I need. We have been through the mill in recent years and he has been very unsupportive. It scares me to think that this is the precedent. Having said all of that I love him and want to grow old with him He has many wonderful qualities and we could be so happy with just some tweaking. God sorry for the mammoth post. The floodgates opened, though it seems just like the tip of iceberg.