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 :)

JohFlow. I'm on the other end of that scenario. I'm the Step Mum. DH's ex left him - I wonder why?? hmmmm?

I noticed that Dh would constantly pick up his kids on everything they did or said as they got older. They do have a good relationship with him now they are adults, but there were months when his oldest son in particular refusedeto come to see us/him. DH had him in tears once as he just basically picked on him all one day. Everything he did or said was wrong. Poor kid. Think carefully, you are choosing to put up with your partners's crap. Your DS doesn't get a choice.

Sorry WillYou did you say that your DH has AS traits?

If it is AS related; there may be ideas of 'how things should be' which he may be reluctant to let go. Were you able to ask/tackle him about his beliefs that the kids weren't behaving? It must be very difficult to live in an environment of constant criticism and I could totally understand the kids reacting in the way they did. I do notice that there are days (when my partner is stressed) that he can be a bit like this. But I would not tolerate it all day. I do challenge him and explain how he may be coming across. If it ever became a habit; I would have to make a choice to move with my DS. I have to think carefully about how to communicate with DP and also about the best time to bring things up (usually when I have had a chance to think things through myself).

We are talking regularly about things and real progress is being made. I also tell him when my effort is starting to leave me exhausted. My DS does like him. Shortly; we may start to explain about the AS in a way that a 10 year old may understand.

Yes DH has AS traits. No obsessions,(although he does work in IT - this might count). He would never pursue a diagnosis for himself though. I realised he has AS traits when our son was diagnosed and I read up on the subject. I also realised that his Dad was most certainly fully AS. Not just traits - the whole hog. Hyper critical of my poor lovely MIL. Unable to socialise - even with extended family. House like one massive unfinished project. I guess DH grew up in a house where every little mistake was picked up on and criticised. Not sure if he is just copying learned behaviour or he just can;t helphimself.

That's where we have been for years too. Now I understand why and now he knows what's going on he's got somewhat better. I do remember that day with his son who was then about 14 though. I kept telling Dh to stop it, but he just could not. Poor DSS is son ended in quiet tears. He didn't let DH see, but it was heartreaking to see. I talked to his son about it and tried to tell him his Dad really loved him, but he didn;t want to hear it really. Understandable from a 14 year old boy I guess.

He does it with our sons too. They are still quite little. I am dreading teenage years, when testosterone starts to fuel our house even more.

Not having a diagnosis does present challenges. It may be very clear that your partner or relative has AS traits; but it difficult to know the origin of these without investigation. Some have the full condition whereas some may have learnt behaviours which appear AS in nature from others in their childhood environment. It is difficult to know (in your instance) where the DH's criticism originates from. Obviously with the second scenario; it is slightly easier to treat.

There are some couples of course that see AS traits and forego diagnosis and just deal with the outcomes privately at home. This could also be because adult diagnosis is so difficult to access and there is no 'cure'. There is also the fact that AS has been de-regulated as a illness or disability. It's just seen as the brain working in a different way. I am in two minds about this. Yes; I recognise that my partner is not ill but that does not mean that his condition isn't bloody difficult to live with.

As you say; heartbreaking to see children beaten up by comments and especially when they suffer the usual sensitivities of teenagehood. How do you get over that as a Mum/Stepmum? I sometimes feel torn in two between protecting my DS and helping my partner to understand better. There have been times when it has felt like two 10 year olds in the room! I'm not sure there are any easy answers.

joh, we deal with it privaately. After DS's diagnosis, DH and I had a few really bad months in our relationship. He ind of went into himself and hardly spoke to me for months. I tried to get him to read up on the subject but he would not. ( dismissed it as quackery) When he did eventually read the literature we had on the subject, he kind of came out of his sulk and we started to speak again. I think he DH now recognises that he has traits. I'm not sure it would score high enough for full diagnosis if that's what he decided to do, but those traits he has are maddening. We can laugh about it now thankfully, and if he is going off one of his 'everything you do is wrong' days, I can remind him that that is an AS trait, and he knocks it off. Sometimes he has got too annoyed to see the funny side though.

Although AS is not 'cureable' People can learn the skills that they do not have intuitively. They can use intellect to mask the traits. I think this is where DH is. He now knows what is making him act or feel the way he is, and he is starting to be able to recognise when he is out of order and stop it.

It's early days for us. DS was only diagnosed in Feb this year, so we are all still learning.

I've been reading this thread with enormous interest. I am certain my father has undiagnosed Asperger's, after my godson was diagnosed a few years ago, and I did some reading on it to help. It made elements of my father's behaviour which were enormously hurtful and baffling as we were growing up immediately more understandable.

I have a question for the partners of people with AS. If anyone finds it intrusive, please say so and I will report and have it deleted.

My question is this - given the difficulties eloquently expressed in this thread in relation to emotional relationships between people with AS and NT people, how did you fall in love with your partner and s/he with you? Is it not extremely difficult for a person with AS to express romantic love in a conventional manner, read signals etc, given that it can be difficult enough for NT people...?

In our case it was a bit of love at first sight on my part. I took one look at him and though he was the man I was meant to marry. I had never really had many boyfriends before I met DH. I didn't/don't consider myslef attractive. I was overwhelmed with his interest - he kind of swept me off my feet.

I understand that it's common for the NT person to be the focus of the AS person's intense interest for a while. This makes them really attentive and can seem really flattering. In my case DH is a damn gorgeous looking man too which helped.

As I mentioned before, AS follks can 'learn' to fit in. My Ds for example can behave more or less normally at school, but he finds it hard work stressful so blows out when he gets home.

I don't want to offend anyone with AS here. Apparently it's much harder to spot/diagnose in girls, as they tend to learn to mirror NT behaviour better than boys.

Thanks, willyou. That makes sense, that the intensity of focus can be intensely romantic. I hadn't thought of it that way.

Anchoress in our case, we had the unsurprising set up that I am not british and had just arrived in the country. I had little knowledge of how things were done here so took behaviours I thought were strange surprising as being English (Big sorry for all the english people here!). I met his parents who were behaving in the same way (well yes FIL is also on the spectrum I think with the same social communication issues).
I remember sitting for meals with them with DH and his dad having a loooong conversation about a particular subject and me feeling completely lost. I had some issues with the English, the language and the subject that was so foreign to me and didn't say a word for the whole meal. No one ever though about stopping and actually talking to me lol....
WE also had similar interests at the time, some of which I stopped when we had the dcs. Big issue as the one thing that we could talk about disappeared.

Finally, someone also mentioned that problems appeared when things changed eg after the birth of the dcs, retirement etc... and it certainly was true for us. Before we just 'adapted' to each other, probably me to him but I accepted because of the culture difference etc... When the dcs arrived, he had to adapt and that didn't go down well.

Oh BTW, DH was already completely crap at reading signals. He is the only guy I know who can invite a woman to his house, then for a meal and... show her the spare bedroom lol.
I was the one to do all the moves!

And he never expressed his love in a conventional way either. No engagement ring for example (his mum told him off and forced him to do so. Apparently I had said one time in passing that engagement rings were not that important).
I asked him if we could get married (He said 'Well you are the person I stayed the longest with so I suppose you are the one...')
etc etc

Joh no diagnosis on our side either. Mainly because DH isn't ready to be examined as if he was 'crazy'.
And with a diagnosis there isn't a lot you can do apart from learning more about AS, the triggers etc... It's a very internal battle/problem to deal with at home, esp as it doesn't affect DH too much (well it probably does but in a way that means he can't hold a job etc...)

I was a bit jaded coming into this relationship after finishing a 12 year relationship that was just starting to turn abusive. I was looking for friends initially but there seemed to be more from the beginning with DP.

I was attracted initially because DP was highly intelligent. He was quicky -witted and can talk wisely about most subjects. I found his quirks endearing and interesting (not been one to shy away from challenge). Because he was so unusual; I could also feel free. He is honest all the time, reliable and loyal. We are opposites in almost every respect (apart from being introverts). He is also very talented in bed. His skin is always warm and when he cuddles he does it wholeheartedly. He is protective of me - something I had never had before. We had some similarities in our home backgrounds so he seemed 'familiar' to an extent.

Yes sometimes DP does sometimes find it hard to express things in a conventionally romantic manner. But I would rather there was a genuine outreach every month or so ; rather than a 1000 'I love you' s that mean nothing. I look for things he does naturally that show he cares - housework, buying chocolate in the rain while I watch telly, running a bath, holding my feet. No big gestures just lots of 'I'm thinking of you right now'. I also appreciate it more if he does buy me flowers/take me out for a meal.

Yes Lady and WillYou it is understandable if someone with potential AS does not really want a diagnosis. If you could imagine feeling different and trying to fit in for so long - and then someone potentially coming along and blowing that out of the water. I could imagine that being quite scary. In fact; most people that I know would rather not know if they had a condition that little can be done for. AS traits related to handling change also come into play.

I guess I am very lucky in that my DP is open to the idea of diagnosis and is a little relieved that there are at least some explanations for parts of his life experience. He tells me when he reads something about AS and recognises himself in it - usually the more blindingly obvious points. He also points out that he does not want to change much (which is reasonable). I said that we at least could do with understanding it more.

So much of this resonates.

I see the hypercritical thing in myself -I wonder if that's a mirror thing.

Certainly growing up I was either criticized or ignored. My self esteem is shot and I've not succeeded where I should have.

Dad is very intelligent,witty, good company at meals I'm sure. But would be equally happy not seeing grand children in ages. He loves them but doesn't seen to see the point . .

l have lived with an AS husband for nearly 30 years. it is equally hard as it is rewarding. Normal is not a word l would ever be able to use. We had 2 children by IVF and family life can be very fraught as children do not come with a manual, or an off button lol

Sometimes l want to give up, but other times l can cope. My son is AS but not as bad as his Dad. My daughter shows traits but l think more anxiety related. Laughter is the best 'cure'. If you don't belly laugh at the absurdity of it all you will cry. I can never welcome my family to my house, never invite friends home, never be out without giving weeks of notice, Christmas and birthdays are hell. One day l will not dread valentines day...... the list is endless.

On a plus side, he is methodical, hardworking, good provider and when he is relaxed at home has a daft humour.

I can relate to so much of this.

For us the issues started when we had changes, looking back H seems unable to cope.He can't seemed to plan ahead, however with his hobby he is obsessive and everything is very detailed.I suspect H has come from a long line of AS males.His brother was described as eccentric but to me he has all the outward signs of AS.

When I met H he appeared so devoted, I think he loves me but it doesn't feel like it.He is reliable and helpful but doesn't do romance in any form.At times I have felt H has stonewalled me but I think he just seems to close down when emotions rise.

I think our Ds has AS, I find it tough as he doesn't enjoy being hugged, as a baby he would avoid eye contact which was something my other children did and it helped us to form a strong bond.He is hyper sensitive to noise and clothing.He speaks literally and we have to correct him as he unintentionally upsets friends.

My marriage is very strained, I'm not sure I can be in the marriage and feel happy.Its feels like too much hard work and negatives outweigh the benefits.I would welcome a site for partners of AS as its hard to get support from friends who have no insight into the behaviours.

Hello everyone So sorry I've not been on here much since the original post to put out feelers for the new site. Slightly overwhelmed with work and wading through treacle (which you all know about ) in other areas of my life.

I have to get some sleep now but promise to get back to you with responses over the weekend. Thank you so much for your feedback to my original question about an NT specific website. I think the answer is clear - which is just as well because it's already under construction . Sweet dreams to all my virtual friends out there …

My motto is you can't fix something that isn't broke!

A person with AS is wired differently neurologically!

Learning about the condition is an important key to successful relationship and adapting (both of you of course) but you can't change the person! Knowing that someone isn't being ie dogmatic on purpose etc They can if they really want too learn NT ways like understanding sarcasm ...bit like us NTs learning multiplication.

Maybe it would be good for NT wives to learn more how they can teach their AS DH's about sarcasm, gestures, emotional responding, non verbal communication, appropriate verbal responses in different situations etc etc as after all it is usually the closest NT person to them (unless they have already divorced)!

Most areas have vol sectors that do social skills training for adults with ASD. Look them up for support and training too!

Joanna112 great you got funding for website. How did you get it? Good luck I am sure it will be the start of a national need for partners of adults with ASD....male and female!

I don't know. My mum spent all her time trying to teach my dad how to behave appropriatly, regularl trying jo explain why up children were upset at being ignored or criticised or disregarded. he'd be all earnest and seem to take it on board and then go on to do the same the next day.

I think I just have to accept my dad isn't emotionally available, won't ever love me in a conventional way, won't support me when I'm struggling or be tactfull about an issue. Or take an interest in the children's activities unless he finds it directly interesting himself. He'll continue to upset and frustrate me.

But he's my dad, and will be there in a shot if I have a practical question or crisis and I love him.

I just think acceptance is easier than hope of a more fulfilling relationship.

Maybe it would be good for NT wives to learn more how they can teach their AS DH's about sarcasm, gestures, emotional responding, non verbal communication, appropriate verbal responses in different situations etc etc as after all it is usually the closest NT person to them (unless they have already divorced)!

I both agree and disagree with that.
I agree that as their partner we certainly are the people who will benefit the most of amy improvement of the social skills of the AS person.
But I am wondering if this is really my role. I have done it, I still do it but often I feel more like a parent/carer towards DH than a wife... And surely that isn't right.
There are things that I have taught DH but they have been very practical things. The emotional ones and how to react... less less so.
And classes are only a good idea if you have someone who 1- has fully accepted that they are on the spectrum and 2- also realize how much discrepancy there is between their reactions and the NT ones. Most of our DH have been diagnosed as adults or are self diagnosed because the diagnosis of AS didn't exist when they were children. They have learnt ways to cope on their own and the idea that 'I am thinking in a different way and I need to make a huge effort to be understood by NTs' just isn't there. I know my DH usually thinks he just IS right and I am the one in the wrong if I misinterpreter what he is saying/doing. You know all the stuff abut rigid thinking etc... and that isn't going to want them to go to classes

I just think acceptance is easier than hope of a more fulfilling relationship.
This is one thing I am thriving to achieve. And just as much the acceptance of the AS is now here and I do take most of his reactions 'the right way', the fact that some of my needs (for emotional connection for example) aren't met means that I do wonder on a regular basis what it is that I am doing.
I suppose it is different when it is a parent/child relationship as you can not change who your dad is. But you can change partner.

Yup. My dad just assumes he's always right. I don't think he'd see why he should change at all. Like earlier on the thread - it seems aspergers wiring leads more towards wanting us to understand and accommodate them and an inability to see our feelings or needs.

That's true my relationship is different, and not my place to change dad. My mum and I have talked about the thread and she's mused about whether she'd have stayed with him if she'd understood more then. However she also says ten years of trying to explain things to him and get him interested in us was enough and wasn't sure any longer would have been any different.

I guess it will depend on the dynamic of the couple, insight of the person on the spectrum, emotional needs of the wife etc?

I agree with the last three posts. Learning is able to take place when there is a capacity there for that. However; let's not underestimate the sheer volume of time this can take with some partners/parents. What if your partner misses 80% of what you say most of the time. There just aren't enough hours in the day to meet that level of need.

As someone else suggested upthread also; some learning is not retained. Some wives/partners/husbands/children find they are repeating things regularly - frustrating.

There are also questions about respect in relationships. Questioning parents as adults is possible; but there is also the small child in us with all the memories and old family conditioning. With partners we want to address the gulf between us - but do not want to patronise.

I do like the idea of having classes/lessons/books on how better to communicate with my partner. But I am under no illusions though that academic study will be a end-all. Putting things into practice will be where the real learning starts!

I've just skimmed a few of the pages here but am delighted/relieved to recognise my DH. He was the one who told me in the very early stages of our relationship that he 'reckons he probably has AS' almost as if that was to be a permanent excuse for his behaviour going forward!

There are good and bad things... He is so sweet and hysterically funny; he does really well socially when he wants to, i.e. when there is a logical reason for it (which as you can imagine, doesn't happen often); he's incredibly skilled with complex things and nobody can do things better than he can (even I would agree with that sometimes!) and a thousand other small things which aren't bad, and are sometimes actually pretty handy... but then there's the bad stuff - the total lack of interest in doing anything social (unless there is a logical reason, as above); the eye contact issues (he has regular staring contests with our kitten - he takes it really personally if she starts staring at him and I have to point out that she is a cat, that's just what they do...); the inability to accept that he could be wrong about anything because he can explain everything totally logically - this is fine (and often interesting) for factual stuff but when you're having an argument, logic flies out the window... and another thousand other small things. Probably some of these are nothing to do with AS and more to do with him being a nutter (in a good way) but reading some posts, I do think he is on the low end of the spectrum.

To reply to OP, I would be delighted to see any sort of support website/group/forum, even just to be able to have a moan about specific things he does/doesn't do that he genuinely has no control over!

Hi

I know i'm not really meant to be on here as I'm the one with AS but I would really appreciate some NT insight into my family's behaviour.

I was DX about 3 months ago. I figured out that I had mild AS about 6 years ago, but as i'm female and the AS is mild it has been difficult to get anyone to take my suspicions seriously until this year.

I mention it rarely with my dm and siblings as when I do they avert their eyes (even tut) and either ignore me or quickly change the subject. I feel 2 inches tall when they do this. They could find it uncomfortable for a number of reasons but I can't help but feel that it's because they are embarrassed that i'm 'making a fuss'. None of them have shown any interest in understanding the condition, not asked questions or looked for literature and it hurts to the point of anguish. It makes me feel ashamed.

None of them have any issue with autism, or people with additional needs. They just think I'm being overdramatic and that since I 'interract fine' I must not be aspergers (like the psychiatrist 5 years ago with no training in female aspergers concluded).

NT partners, parents and siblings, please could you give me some insight into my family and their need to ignore my situation? Is it possible that they will come round on their own or do I have to address it with them head on and explain how they are hurting me?

Thanks.x