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 :)

Going back to the original op (are you coming back Joanna?), a website for NT partners would be excellent.

I would suggest that measures are put in place so that it is a safe, private site for NT partners to feel comfortable that they can vent without being attacked. Perhaps some guidelines and swift intervention/deletion if things get heated.

As we can see by the way that the thread has gone on so far; closing the gap between people with Aspergers and their partners may be an emotive one. It is a misunderstood area and one that is nowhere near discussed enough. Communication and discussion is essential to move forward. It is easy to get defensive when you feel misunderstood. I don't want to be preachy - but it is important that we start again. Nowhere near enough people are getting support with their relationships. And yes it is a open forum - thank god for that diversity.

My partner of three years has not been officially diagnosed with Asperger's - but displays many of the recognised traits. He has also taken online tests which put him clearly inside the relevant spectrum. He has approached his GP who wasn't really forward about real possibility of diagnosis/was dismissive. We have agreed to seek a second opinion. I think we both need support because we live together and have times when our relationship really struggles. He is a lovely man and has many qualities that I admire.

Here is a small sample of areas where I think my partner displays traits. I would welcome helpful commentary/experiences....

a.) Missing the larger picture in arguments, focussing in on individual words/facts or taking things literally - which I find confusing and frustrating.
b.) Saying things that remind me that my son and I are 'guests' in his house even after three years - which makes me feel rejected and withered. Referrals to 'my house, my telly, my oven...'
c.) Focussing on little homework details e.g. sweeping behind the sofas when the rest of the room needs a wipe down. Housework only after rows.
d.) Not preparing for things in general - getting himself only ready at the last minute.
e.) Hours and Hours on screens - first it was watching telly, then the X-box, then the laptop, now its the phone. Saying he is not ignoring people because he answers occasional questions when asked. But otherwise totally disengaged from others - lonely, hurtful
f.) Telling me to 'stay to that side of the sofa' (budge) when I need a cuddle be he does not.
g.) Constant pub-style banter which sounds a lot like constant moaning/ mean-wordery (new term there ). Which makes me want to fill his face in (I'm a pacifist generally). Says he does this as a cover-all when he is not sure how to approach a conversation.

I go through periods when I can just say that's probably the Aspergers and others when I have to say 'hold on here - that's really getting on my wick!'

Anyone experiencing similar?

Jon YY to period when you think it's just the AS and periods when you just want to scream.

I found that what helps is when DH isn't as stressed so he copes better and the AS isn't as obvious. But also part of it has been about me knowing better what I am finding acceptable and what is non negotiable. Obviously if am talking about things that I know he CAN do (so usually it's the very practical stuff) so I have my own little bits of space too.
Also trying to compensate for the things I know he will never do. Use he will give me a cuddle when asked but it feels to me like I am hugging a statue. There is no warmth. He is not there and us looking away as if waiting for if all to finish. Very very hurtful when you have asked for a cuddle because you feel low and need emotional support.
Do now I have stopped expecting anything like this and I am finding other ways. Friends (the very few I have), HCP ...

I am feeling sometime that it isn't right though. I am compensating for his disabity which in turn means I need to find other ways to compensate for the imbalance that his disability has on me

Joh this is very reminiscent of my DF. If there is any reading matter around he is drawn to it, even if visiting or if there were guests at ours. When we finally got a telly (he was against, till BBC2 made it 'worth it') the first thing he'd do when we got in was switch it on.

In addition, both DM and I found that we would "tread on landmines" (as I call it) - suddenly find that something, usually a misunderstanding, had triggered a storm. Of course, with him and me both AS (as I believe) this happened fairly frequently. He was and is a v frugal man, which caused problems for DM. And brutally honest - he once met me at the airport, his first words were "you've put on weight!" I could go on for pages.

It was a very puzzling childhood, and only in mid-life did I come to realise what a kind man he is.

Joh Flow - that sweeping behind the sofa when the rest of the room needs cleaning - that is an aha for me. DH insists on doing our garden. It is an absolute mess. He spends several hours out there each summer, weeding a minute patch of soil, over and over again, and planting tiny plants right out of sight behind straggling dead ones. he likes to go and stand and admire his handiwork. No one else can see that he;s done a thing. I'd love access to the garden but have enough on my plate, and really try to teach him that keeping on top of the big stuff, like mowing the lawn and weeding the patio will make a genuine difference to whether or not we can use the garden. To no avail, so far. Never occurred to me this was an AS trait.

Gussie, your words really resonate with me. My experience of living with my ex sounds very much like yours. He was not diagnosed, but our relate counsellor suggested it and it's something I'd often suspected.

I must say, it was a wise MNer who said to me that it didn't really matter what the label,was, if I was unhappy in my relationship the. I had the right to leave. It was as if a light turned on. I didn't need to make excuses for him or to try and compromise or understand how he felt, as he was never going to do that for me.

I have since met someone who is so warm and loving, over emotional, thoughtful and romantic. It has taken some getting used to as I had switched off a lot of my emotional responses, numbed myself to the pain I felt being pushed aside and treated like an over enthusiastic puppy.

I now have someone who craves my touch, who welcomes and reciprocates thoughtful gestures, appreciates my giving nature, who reviews and resolves disagreements to make sure that we both achieve what we need from them. It's like a different world.

I don't want to make this post into a grand LTB to all of your Hs as I'm sure many people can make it work, but nevertheless, I would caution against the idea that you HAVE to make a marriage work.

My ex is so much happier being a PT dad, plenty of time and space for his hobbies, no demands for affection or attention and when he does see the DCs he's a much better dad for it.

Its a difficult one isn't it Lady? It demands an awful lot of time, patience and kindness. I go through periods when I start to realise that I need to take time for myself - I go 'on strike' . I need this or I am not any type of help to him. (Just read that back - sometimes I get stuck as to whether this is a relationship or a 'project'. When things are good it feels like a lovely relationship, when we struggle it feels more like social work, for lack of a better description). Don't want that to sound reductionist of any person that has the condition by the way.

I agree that AS increases when my partner is stressed - DP becomes more insular (have I spelt that right?) argumentative or detail-focussed. I try to understand that as I behave differently when stressed too.

Because I am just learning how to deal with a partner with AS; I am still learning what works for us. It seems to be trial and error somewhat. I am having to look at what I find acceptable and what I can't live with. I am demanding that my partner tries to step outside of himself from time to time. Communication isn't ever easy but I am determined not to become part of the furniture.

One of the most difficult things for me about living with my partner is being out of time with each other. For Example; receiving comfort - usually miss-timed for when I need it. I am still early into understanding the condition; but I don't think I could ever give up on asking for my needs to be met. However; maybe that may be because my partner does intermittently show that he has some capacity to offer this.

I agree that we need to find alternative methods sometimes to get what we need. And some basic needs e.g. touch are near impossible to replace. I think it is important to support each other - it can be a very lonely business

Two - there have been times when I've thought about it. But, I love him. And, if he lost a leg I wouldn't feel it reasonable to expect him to go hillwalking...and so, I do feel obliged to make allowances for his perceived emotional shortcomings.

He's not a bad man. He's not a bad father, and, as Amber et al point out, there are positives to having an AS partner. he's very loyal, utterly dependable, etc etc etc. And, LTB - well, I made promises to him. Which, I meant. And, which are very tricky to keep at the moment.

I get stuck on the whole marriage vows thing. He either made me promises which he had no intention of keeping, or was unable to keep. Either way - it's a bit hard to accept that he is comfortable breaking them. Daily. (love and cherish, sickness and health. Not shagging around, he's good at keeping that one)

Focussing on the details - oh yes Not. That could be a trait. I catch my partner staring into space sometimes (intense daydreaming it looks like ). I ask him what he is looking at - it will be a minute piece of decor/house maintenance. I say 'you've been looking at that for a while'. He then goes into a long (and very minutely detailed) description of how that is 'not right' (read that as perfect). I ask 'can you not let that drop for now?' But he honestly does struggle with just accepting it. It's out-of-synch with his thinking. Sometimes I find the conversation interesting. Sometimes I think 'I've lost half an hour there'.

As far as the garden; have you had a good look at it? Because I suspect that it near-represents perfection for your DH. Would be interesting to see what brings satisfaction to him.

two again YY to the fact that by living with someone with AS you are also accepting to forego a lot of things that would be seen as unacceptable in an NT/NT relationship. Sometimes I feel I am grieving all these things that aren't there. The warmth, the physical touch, the complicity...

And then I remember why I decided to marry him. His honesty, reliability were big on my list.
I also remember hat I live in a foreign country, that I might not be able to go back (and if I did, the dcs would loose their dad), that I wouldn't be able to do my job in my country.... So I carry one end though I regularly crave all god things you describe.

gussie did your DH knew about AS when he got married?
I am guessing that he did take the vows and meant it but his understanding of what it means and how much he can or should do will be different from you.
Eg he probably wouldn't put giving a hug into the caring category iyswim

Lady - honesty, reliability and loyalty - yes. these are things that are very top of my list of important qualities in a man and DH has them all.

Silvery raises an interesting point about continuing AS routines whilst visiting other's homes. Do people find their partners do this - awkward I think/

LID - interesting question.

No, is the short answer. And, yes, he did mean what he promised me, but, Life Has Happened and so, I kind of expected that we'd learn to cope together. And, that hasn't happened.

You are right, he's been raised by a long line of AS (undiagnosed, obviously) so, he's totally bemused (and quite distressed) by my resolute unhappiness.

Naturally, he sees this as a general dissatisfaction with my lot.

Apparently, it's common for AS/NT issues to start when babies are born or retirement happens. Things that turn your carefully organised world upside down.

Silvery - visiting other people is extremely stressful. They never have the right type of pillow, for a start.

Because you have people to visit? I mean apart from parents and PIL.

No. We never have people over.

Part of the reason for doing this huge extension was so we'd have a bolt hole spare room, so I could have people over and he could escape when it all got too much.

Never happened.

The one time I did organise a BBQ with some very dear friends he opted to build a greenhouse. Ten minutes before they arrived it was imperative that the greenhouse went up.

Now, I'm betting THAT sounds familiar to thread-ees?

Hi, I'm new, but I was so struck by what gussiegrips said there about the greenhouse I had to reply.
My husband is undiagnosed but he knows he's on the spectrum somewhere- it's ok, I am too, we muddle along. But he gets obsessions about getting something done RIGHT NOW when it's a massive project that could be done at another, better time. Like cleaning the whole house two hours before his mum arrives. I think it's a stress thing- a way of diverting his nervous energy, maybe? What does everyone else think?

I've been talking to my mum about this thread. Mum's said if only she knew then what people know now she might not have ended up divorced. She 100% believed he didn't care/ seemed not to have emotions/didn't realise he needed to interact with kids. She agrees it may well not really be like that in that he does have emotions and cares, but that is exactly what it feels like. Also the exasperation with having to be the one to explain everything.

And the above list -
a.) Missing the larger picture in arguments, focussing in on individual words/facts or taking things literally -

Oh yes. This drives me nuts. I give my dad "news" or ask him a question - and instead of listening to me or dealing with the issue he worries whether I pronounced a word correctly.... Definitely feels like he doesnt care about the issue.

b.) Saying things that remind me that my son and I are 'guests' in his house even after three years -

OH YES. He didn't even like me eating "his" food. I was his daughter.... It was an interesting childhood.

d.) Not preparing for things in general - getting himself only ready at the last minute.

Heh - I do that. I wish I didn't. I wonder if I qualify a bit for ADD. It really is only recently I've realised you don't have to work backwards from teh time you have to be somewhere and leave at the last possible minute...

e.) Hours and Hours on screens - first it was watching telly, then the X-box, then the laptop, now its the phone. Saying he is not ignoring people because he answers occasional questions when asked. But otherwise totally disengaged from others - lonely, hurtful

YES YES YES. My dad always watched the 6 o clock news. He would not be interupted. When as an adult I used to go visit him he'd just carry on watching tv. No idea I'd actually like to talk him!

Its so hard to explain to others why yes, I had an abusive childhood for x reasons, but no it wasn't really his fault....

Its so hard to explain to others why yes, I had an abusive childhood for x reasons, but no it wasn't really his fault....

As a parent that has been the ONE thing that was worrying me a lot. The effect on the dcs.
I have to come the conclusion that it depends how 'bad' things are. DH is full 'I have lost control' type of things for long period is a NO-NO. If we were ever going back there and he wasn't doing something about it, then yes I would leave.
When things are 'unusual' but not 'bad', then I am hoping that what will stay is 'My dad was never able to show me he loved me but somehow I knew he did' that I've read from some children of AS father.

Lady - In my case I had an abusive background for all sorts of other reasons. I imagine had my mother been able to understand and articulate anything to do with emotions it may have been easier. I just grew up in a house where I was on my own with my dad for a few years and I basically parented myself as he didn't realise he was supposed to do anything!

If you and/or he has insight into his condition and its a topic you're able to discuss with your children and/or they are able to get emotional support from you - it will be worlds apart for our situation.

So many things said here resonate with me. My lovely DH struggles with Asperger traits and learned behaviour from his Aspergers Dad.

I don't have a problem with the lack of a social life, as my upbringing makes me avoid social occasions anyway. My DH tries very hard to give me more affection which has really helped. I still struggle with the fact that he can't hide when he finds what I'm saying boring (which is most of the time), even though I am expected to listen to him talk ad nauseam about things I stop being interested in after a short time. Luckily I am quite happy with my own company although it gets lonely at times.

My DH has been making a huge effort since DS1 was born to try and improve difficult traits. This is because he doesn't want DS1 to be bullied at school like he was, get on with people better at work, etc. I have also had to curb my reclusive tendencies so that DCs get practice at social interactions. We think it's paying off- DS1 who has Asperger traits seems to be doing ok so far (he's 9). He (like DH) is very clever, even tempered and is a nice person. People realise his heart's in the right place, even if he doesn't pick up social cues very well. Luckily the school (in nz) is very good at encouraging tolerant behaviour.

It's great to read other people's experiences of living with Aspergers and makes me realise that my DH's Aspergers behaviour is mild. It makes me feel grateful for what I have. Thanks and wishing you all the very best.

Gussie - with my DH it was a wood store. We were having people over and he HAD to build a wood store instead of helping me get the house presentable and cook.

To be clear they are the ONLY people we ever have over. They share our school run, and are used to DH. They are lovely. I had a heart to heart with 'her' about DH once and my suspicions about his AS, and 'he' is a lovely understanding guy. I think they come for my sake.

Thank you Northern for your additional comments on my list. It is nice to hear that others have a similar experience - reminds me that I am not on my own.

I think you raise an interesting point about parental/step-parent capacities whilst someone has Aspergers.

I have a DS (from a previous relationship) and feel that I have to constantly campaign for my partner to be involved with him. The involvement seems to ebb and flow. Most of the time; I think that he would probably prefer not to be involved with my DS - makes comments about it being hard work, him being mine etc. I am determined not do everything on my own. I seems to be taking an age for them to bond. It can be quite hurtful for everyone involved. And when the two argue; I often have to come in to peace-make. He also struggles to play with him because of a lack of imagination (my son loves making up scenarios). I have to ask DP to find activities that they can do together - nothing comes naturally. If he could get out of doing childcare; he would try. He also struggles to find the right level when discipline is needed - often because he is unsure why my DS gets annoyed/behaves badly.

Does anyone else have similar experiences?