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 :)

This is all really helpful - good to hear some positives too. My dh doesn't have any friends but if he was to meet another person with aspergers would they 'click' ? Sorry if that sounds very simplistic !

Not necessarily, but it's likely. Autism and personality and interests all count. But yes, more likely. Many of us find friends online then build that relationship.

Oh dear... I have Asperger's, and it's sad how often 'not reading social cues/emotions' is translated into not 'feeling' social cues/emotions. We do. We want a hug, we want to cry, we want to help, we're distressed, we want to tell the story of something that just happened. There IS stuff going on; it IS felt very deeply, and not always being able to tell if another person is distressed is not the same as not caring enough to have noticed.

Amber thanks for that answer about eye contact. I had no idea.
Athelstane - yes, that's becoming clearer. Although for almost twenty years DH said that he didn't want or need friends, and only recently admitted that he would like one. (He doesn't have any. Not one single friend. he had three or four when I met him but he dropped them all once we married, as he had me instead and one was enough. One got back in touch recently though, and I'm shoving him out the door for a drink with her as he does love her and they go back a long way.)

I hope the people on this thread with Aspergers don't think it's a wholly negative thread. I love certain things about aspies. I love that my son can't tell a lie to save his life. he just can't. And like Amber said, he has the most acute sense of social justice. So does my niece, actually. They'd both make brilliant social justice campaigners. So clear headed and won't get swayed by any political smoke screening.

Don't think we haven't noticed, by the way, that most people seem to enjoy a bit of social interaction - those BBQs you talk about - everyone hanging around swishing their hair and laughing as though it's one big Martini advert. Actually enjoying the company. And on REALLY good days, there's enough energy to play the part of alert, interested, Martini-advert actor. For about an hour. But the effort it takes to watch, listen, pay attention, think once, think twice, watch again, and THEN say the thing you think might be interesting, but really, you've absolutely bugger all idea whether it is still relevant/interesting/appropriate/a shocking thing to say at this point in the conversation... It's hard work, and it's not because we don't want to, or we don't want to have friends, or we don't get lonely - it's just really, really, really hard to work out what's going on socially.

Athelstane, that's pretty much exactly what DH says about social occasions (and interestingly what both my best female friends say too.)

My ds8 has a diagnosis of ASD but he's more of an Aspergers person. My dad, uncle & brother all have Aspergers.

I have an older son of 24 who doesn't have Aspergers or any traits.

I have a ds5 who has traits but I don't know if its enough to get a diagnosis.

Ds5 is very different from ds8. Does anyone have experience of siblings on the spectrum but equally very different?

Oh dear. I'm feeling really down about this today. In the back of my mind I've been re-evaluating so much stuff that didn't quite make sense over the years, especially with regard to DH and how he is with me, but also DS2 and stuff that has often irritated me - like him constantly asking how I am or what I'm feeling - I think now that it's because he can't tell from my face.

I feel quite worn down by it today. That CAD thing Maxine Aston lists is like a tick box description of me. I feel sad that all my lethargy and depression and inability to cope with stress, which had puzzled me massively as they really intensified in the past five years, have been since DH was made redundant and has been at home all day long while I try and work from home.

Does anyone know any antidotes to it? I've taken up running and fitness, and they help a bit. Don't really socialise much any more but I suppose I should make more effort to. (Another CAD symptom: used to socialise, now finds it hard.) I feel like someone has just lifted the lid on our family life and poked it with a stick. Stuff I thought was normal now feels frustrating, like I've had enough - for a short while at least. I've had enough of just coping with never having questions answered (he heard what i said, he knew the answer, he saw no need to communicate it to the asker etc etc.) Enough of feeling like I don't exist. I'm really emotionally scraping the barrel right now.

Sometimes in the past I've felt like I lean on DS1 a bit because he's so upbeat and cheery. But maybe he's normal. And it's just that I've got used to the morosity of the other two. Sorry. Offloading hugely right now. Just suddenly think: bloody hell, for twenty years I've put up with being ignored and not responded to. I just took it even though it wound me up and now I suddenly get that there's no chance of that changing. That's just how DH is. He just doesn't see that it's hard to live with.

I am so glad that I came across this post. My OH and I have been living together for two years and probably since the day he moved in I have suspected that he has some form of AS. I have gently mentioned it to him a couple of times and he finally did some research and online tests a few weeks ago and they came out strongly positive. This caused him to do lots of soul searching and lots of things in his past began to make sense to him.

We went to our GP last week and found out that in our area there are no adult AS services and it was suggested that he seeks help through the local Mental Health services for his anxiety and OCD as our PCT does not fund out-of-area referrals. This has put my poor OH in a total state and he has been in meltdown ever since. He has not been sleeping and his anxiety is off the scale. It took a lot of courage for him to seek help and he feels that he has been knocked back. I have suggested that he takes the offer of help and asks for a diagnosis once he is in the local mental health system. He has decided to do this, but will need my support as he does not cope well with officialdom and new situations.

We are both furious that there is no help locally for adults with AS, and are considering asking for a private referral if the local mental health services prove to be no help.

By way of background, my OH displays very strong AS characteristics. He has an excellent memory for details and facts - like a walking Wikipedia. He has obsessions and special interests - music, films and football and will talk for hours about them. He needs routines and has a fear of change. He struggles with social situations, new people, new places and new situations. He is completely one-track - he cannot multi-task or think of the future. He is unable to plan for the next task until he has finished each task. He is very self-centered and finds it difficult to show empathy or give emotional support. He often completely withdraws into his own world. There are other signs but the list is getting rather long, so I will stop now!

Not surprisingly he has had very few close relationships and those that he has had have been either strange (distant) or troubled. He and I actually have a very strong bond and I love him dearly for all his quirks. I am hoping that getting a diagnosis and some help with his AS will help both of us. At the moment I tend to suppress a lot of my emotional needs, and focus on him, but I know that this is not sustainable. I need to get better at telling him what I need, be it a listening ear after a hard day at work, or a foot rub! And he needs to acknowledge that my needs are as important as his.

Sorry this is such a long post but there is no-one IRL that I can talk to about this at the moment.

I think a website JUST for NT partners would be a fantastic idea. The websites I have searched in the past have either had a negative approach to the AS partner or alternatively been very pro helping the AS partner at the cost of the NT partner.
Whilst I'm all for assisting my DH, I would love a website which supports the NT partner, as its gets very lonely doing everything yourself and being solely responsible for all my DS needs. It is very difficult to explain the level of frustration and loneliness that can happen in a marriage with an AS partner. The sensation of banging your head against a brick wall can be overwhelming. Sorry that just came out in a big whoosh of emotion!

Yes Cloud. That banging your head against a brick wall thing is exactly right. All our married life I've asked him why he stonewalls me emotionally. Now I know. He just used to stare blankly. Had no idea what I meant. Just dead behind the eyes if we discuss anything of any emotional content.

Mostly I love him but today I've so had enough of jollying the pair of them along.

Just to add that I would love a website or some form of support to help me. We are struggling at the moment as I feel that I am constantly suppressing my needs. He is a lovely man and I love him dearly but God he is difficult to live with.

Um, just wanted to point out that 'dead behind the eyes' is quite a hurtful description. He will have emotions and feelings every bit as strong as yours - but they are processed differently and not necessarily at the time.

I think I may back out of this thread actually - fair enough that people have frustrations and need to vent - but it makes me sad.

Me too Athel.

Hi Athel,

Thing is, this thread is for partners not aspies and I would never say that to him because I know it's hurtful and also that it's not true. But it is how he comes over, as in, I get nothing back at all from him in so many emotional areas. So it can't be hurtful to him, because I'm not attacking him, I'm venting in a safe place where he won't get hurt.

We have feelings too, that are never acknowledged. We can't always be caring for our partners and making allowances when none are ever made for us. It just means we're running on empty and this particular engine feels kaput. When I'm really frustrated, I simply behave towards him the way he does towards me: not acknowledging when he speaks, not saying nice things all the time. Not touching him gently in passing. He doesn't like it. Well neither do I, only I have to put up with it all day every day whereas he puts up with it for about 30 mins twice a year when I'm in a mood. So I get frustrated and here is the place to say it. I've been tolerant for twenty bloody years and today I don't feel tolerant.

My DH really is my DH. I love him and like him more than anyone else I've ever met and a lot of that must be to do with the way he is wired, neurologically, because that stuff matters to me - far more than looks or status or anything else that appeal to some people. But he can be hard work. That's all.

notagiraffe you put down exactly how I feel, but in a far more eloquent way. I love my DH but I'm exhausted after 14 years of trying to make things better for him whilst I get nothing in return.

I also have felt that at times I began to mirror DH's behaviour. I began to avoid social contact, stopped trying new things and became depressed and anxious. I had to fight very hard to get the original me back, which meant sadly doing a lot of things on my own or with DS, as I couldn't keep being responsible for DH's life.

I wonder if it would be ok to marry someone who was Blind and say they are 'dead behind the eyes'. Support fro partners is great but expressions like that do hit hard for autistic people reading. We cannot see people properly but truly it is not the same as being some zombie :-(
Also now hiding this thread.

It might not be the best thread for those on the spectrum to read. I do think its important for those who are NT and living with those on the spectrum have a space to talk about how they are coping in NT language.

Just as its good for aspies to be able to talk to other aspies about how they are finding life, and are free to talk as they would normally, it is important for NT to talk to other NT in their same situation. Usually talk is all geared towards understanding the person on the spectrum and sometimes it needs to be about caring for the NT person having to adjust.

Giraffe, I know, I'm sorry - I shouldn't really have commented on this thread to start with as you were quite clear it was for partners, and I DO understand that frustrations need to be spoken if they're not to get worse.

I think I just wanted to point out that not being able to express, verbalise or display the right emotion at the right time doesn't mean it doesn't exist - this is perhaps the hardest/worst misunderstanding I have throughout my life - and it's another little knock to the soul to see it repeated. So I'm not backing out of the thread because you're wrong, or you don't feel these things, or that you shouldn't say it when you do, because this is your thread for your trouble - but most of us work really hard at this and it's painful to read of someone failing yet again to work out what is wanted, and being called 'dead behind the eyes' as a result.

So it's best I back out, so you can say what you need to without fear of upsetting people. And you have all my good wishes for finding a better way of interacting.

x-posted with Northern, sorry.

Athel, I can understand the "dead behind the eyes" comment in particular could be hard to read. I don't think for a minute these partners would say that to their ASD partners. They are trying to express how it feels to them. Its not nec about them needing to understand the aspie, but sharing a feeling with another NT, partly so as not to hurt the aspie in their life. It might not be the best thread to be on simply as the comments won't be couched in the safest language, and may cause upset where it isn't intentional.

Lilyrose88 your DH sounds a lot like mine

Look, amber, athel, I am sorry that you are upset, but you're not even taking on board that the reason I'm letting off steam here is because it is a safe and unthreatening place dedicated to supporting partners. You are just homing in on something you don't like with no regard for my feelings (note, that the thread is for me and people like me, not for you - there are other threads. Not saying don't join in but I am saying try at least to respect the fact that I am only doing what this thread is for and there are precious few outlets.

No one goes through life without getting offended, no one has that right. Nor does anyone go through life without occasionally getting exasperated by their partner, aspie or not. But it's pretty bitterly ironic that on the support thread I'm being cornered by insensitive responses from people who are not those the thread was set up for, and who are not even trying to understand the exasperation. So yes, please, amber, do stand down from the thread if you're not prepared to offer support to people going through a difficult time. Go elsewhere. For now.

Athel, thank you so much g=for being understanding. That means a lot. If you have read my posts you know that I have made a clear distinction between what my aspie DH feels (a lot) and how he expresses it (not at all) and that is where the frustration lies. Not in him being dead behind the eyes but in that being all that is conveyed to me.

Sorry, nothing more annoying than place marking but I really want to come back & read this properly when I have more time.

Interesting thread...

I always like to read experiences of people with AS.
I always take them into account because they are a reminder of how hard it is for people with AS to deal with everyday things, with the reminder that they are all different and that not all aspies will be extremely sensitive to sensory stuff etc... (eg my DH isn't that sensitive, if anything, he is NOT sensitive to a lot of things eg pain).

However, I would also like to see the opposite happening too. That people with AS also recognise that life for an NT with an AS person IS hard. The miscommunication issues are difficult for both aspies and NT. NT also are struggling in the relationship, trying to make sense of things they can't understand too.
To take the example of the party and the AS pov, I could do the same with me and my DH when I need to talk to him about an important subject (eg changing school for the dcs) and I can not find a way to talk/communicate with him. When he can't actually tell me what he thinks (and I have learnt to appreciate it's because he can't not because he doesn't want to). I want us to be a partnership and ... neither him or me can manage to do that.
YY to my DH being reliable and honest and diligent. He also has a very strong sense of duty and will go out of his way to do what he thinks is right.
But there is also the outbursts, the emotional overwhelm, the incapacity to express one's problems which makes it very hard for me as an NT. Lack of communication means I am feeling powerless to support him (what am I suppose to do when I don't know what he would best like me to do to help?). And that's not a nice feeling towards someone you love.

The sensitivity to emotions etc means that I am the one who is always on the watch for the signs that he is going in overload. To find ways to ease things for him. For my sake and the sake of the dcs. (Too many outbursts are directed towards them).

I am also the one to explain again and again. Eg for a while there was a lot of tension in the house. dc1 was often complaining about headaches and tummy aches. All due to the stress at home. DH reaction? Oh he is just playing it up. He can't have that many headaches. And then. But what does he have to be stressed about? he is a child... Cue for me to explain. Again. And again. Just like I do with dc2 who also has AS.

And a lot of other things that means that I am not feeling emotionally supported by him, that I even had to teach him completely how to support me on a practical level after the arrival of the dcs (so no it didn't come 'naturally'. he would have been happy to just carry on like he was pre-dcs and still does in some extend).

I am really and at the fact that it's OK for parents of children with AS to say they are feeling down, find it hard etc... to deal with their dcs but somehow it's frown upon to say the same as a partner. As a parent, you get lots of support, people giving you 'tricks' to make things smoother. As a partner, you are told to suck it up and 'can't you see hoe hard it is for them. Can you not make an effort?'.
Why is that? Are aspies suddenly becoming so easy to live with when they reach 18yo?