Married to someone with Aspergers: support thread 4 (replacement one)

[changerofnameaspiethread]

This thread is for partners seeking to understand the dynamics of their relationship with someone with ASD. It is a support thread, and a safe space to have a bit of a rant. Avoid sweeping generalisations if possible, try and keep it specific to you and your partner. Otherwise the thread can be deleted, like Support Thread 4 The Original.

Previous threads:
1st thread: www.mumsnet.com/Talk/relationships/3281058-Is-anyone-married-to-someone-with-Aspergers
2nd thread: www.mumsnet.com/Talk/relationships/3325419-married-to-someone-with-asperger-s-support-group-here
3rd thread: www.mumsnet.com/Talk/relationships/a3463341-Married-to-someone-with-Aspergers-Support-group-here-Thread-3

Ah...

Those questions @Moffa my own psych asked me;

Do you feel loved? Sometimes, but the expressions of love felt forced and fake
Do you feel safe? Mostly (apart from the tantrums)
Do you feel happy? No
Do you feel valued? No

During my pregnancy, I had HG and was unable to get out of bed after 11 am, movement triggered vomitting. At 14 weeks I felt so ill that I asked him to take me to hospital.

He really didn't want to.

It turned out to be the start of fucking sepsis and the baby was given 5% chance to live. And he hadn't wanted to take me to hospital. That's one of the things I can't get over because I don't feel safe. There have been other things that are even worse.

(The baby is now an unstoppable 5 year old, though .... four mothers of grown up children have asked me if I think he might be a bit autistic ... )

Sea - me too.

There are two occasions where he did, or rather didn't do, things which could have had serious consequences for me and then for our kid.

I don't trust him and his decision making. If there's a medical emergency he doesn't know what to do - so, he does nothing.

I have flitted between "that was monstrous" and "that's just not his fault" for years. The end point though, is that I don't trust him - so, I could never leave him when the kids were younger because he'd either have EOW and that was a risk, or he'd have to have supervised visits, and that's unfair.

Horrendous to live with. Sympathies.

I didn't leave mine if they were poorly. I didn't think he'd recognise when it was time to call an ambulance. He hates fuss, he'd rather suffer in silence.

To be fair to my DH, he has face blindness. So, he can't be expected to tell when our then-5-year-old with scary asthma was blue. He can't see it.

It is why I stayed. Our son would be at risk if his dad was in sole charge.

It's hard, because, it's neglect, but, it's not neglectful, and that nuance is really hard to communicate to people who don't have kids with people who have AS traits.

I don't miss those days. The sickly 5 year old is now bit and strong and very like his dad

Hi.

I feel a bit of a fraud posting here because I'm not married. I'm not even still with the man in questions, but I'm really struggling with some of his behaviours post break up and I don't know where else to go.

If I speak to friends about this, I just get told that I'm "better off out of it" and they call him names or refuse to talk about it at all. I can understand that in light of what's happened, but I need to offload to people who 'get it'.

I don't hate him. I understand why he is doing what he's doing but it doesn't make it any easier to deal with.

Is it ok if I post here?

Our DD collapsed 2 years ago and became unconscious. After scooping her up in hysterics I yelled at DH to dial 999. He wouldnt.
"Let's just see..." He said.
I then had to pass her over to her idiot father whilst calling 999 myself and try to assess if she was breathing etc. DH just cuddled her and made bo observations whatsoever.
She'd had a severe hypo and was bluelighted to hospital after being stabilised.
I can not trust DH at all when the children are poorly, although he is a hands on father. For this reason, I am stuck with him until the youngest is old enough to speak up for herself. Then I will have a rule that I am called immediately should the children complain they are ill whilst in his care and I will ensure oldest DD has a phone so that she can call me.

@TheEx - welcome, and feel free to post. Hopefully someone here can help.

Thanks, Time.

Ok, in a nutshell (although this might end up being a fucking huge nutshell...) I met a man just over 2 years ago. He was the loveliest, kindest, most thoughtful, most compassionate, honest, straightforward man I've ever met. For a while. He is also autistic.

After a couple of months of growing closer as friends, we got together. It wouldn't be an exaggeration to say I fell in love with him very easily, which is unheard of for me.

Anyway, what followed was a 2 year on and off intensely passionate relationship. I probably shouldn't have gone on as long as it did. But the negative behaviours didn't start to emerge until we'd been together for about 4 months. And that was the first time he spent 3 hours in an evening non stop messaging me and when I eventually told him I was going to bed and wouldn't read any more of his messages until the morning, it triggered the first of many similar meltdowns during which he'd dump me, smash his phone or block me, delete his email account and not speak to me for a fortnight when he was ever so contrite and had finally processed what was actually happening rather than what he perceived to be happening...

Anyway, fast forward 18 months and we split up for good. He regularly ended it because he thought I didn't love him; thought I was cheating on him; accused me of not being the person he thought I was... all for really innocent things like not replying to his message quickly enough because i was in the bath or on the way home from work or because I was just asleep.

But his interpretation of any situation was, obviously, the only one and the right one. Until of course, I could reason with him and 'evidence' my position. Each time it seemed to be better for longer and I suppose I just hoped that, eventually, he'd be able to manage his emotional responses for long enough to use one of the strategies we'd put in place (that actually worked when he used them).

So fast forward to now. He has totally rewritten the past. Is presenting his inaccurate perceptions to people as fact and has accused me of all manner of things. As a result, I've lost friends; I'm unable to go to some of the places etc I used to go to because I don't want to bump into him or the people he's turned against me and he's created quite a hostile environment for me. So it's had a massive impact on my social life.

Frankly, I'm angry and I'm fucked off. I gave him more of myself than I've ever given anyone. And it wasn't enough. I prioritised him over myself but it still wasn't enough. And now, I've got people thinking I 'dominated' him; that I 'manipulated' him; that I 'took advantage' of him. When I have 100 or more examples of all the times I didn't do any of those things and he has precisely no examples of times I did.

Except that he has rewritten some of the less desireable behaviours towards other people as me having 'made him do it'.

It's all lies. Although I understand that it isn't lies to him. And it's just really fucking unfair.

No one else ever sees this side of him. Everyone else only sees the loveliness that I fell in love with.

There are only a couple of people who don't hold me responsible for the whole thing and that is because they've known him a long time and they witnessed some of these meltdowns.

I don't hate him. I'm pissed off with him. I'm angry with other people for being so short sighted as to just believe his slander without even speaking to me about it.

For example, I went out the other week with a friend of mine. We just happened to go in to a pub where he was. He saw me, dropped his head and he and his friend left immediately. So I'm the bitch who treated him so badly he can't even bear to be in the same building as me. Is how it is being perceived.

It's all just lies. But he believes every word of it. And so do they.

And there's nothing I can do. So I thought I'd just have a bit of a rant here about it!

Thank you for listening

Oh dear!

It was clearly not easy for him to manage his strong emotions- did he have any help from someone else? Any counselling?

And how about you? Have you found a way of talking about it to other people which expresses what happened from your point of view?

I think I've been 'acquired' twice by men with ASD. An initial intense phase, followed by a time when his focus shifts to something else, and I was simply part of the furniture.

No. No counselling. He'd have had to admit that his perceptions might have been off for that and I think now that he didn't ever really. I think he just felt I was lying to him.

He's getting plenty of support now from people who are happy to validate his perspective though

I think the problem was that I was his focus. I think I became a fixation for him. Even on the nights I didn't see him, he expected to be in constant (and I mean constant) contact with him via whatsapp. If I was online talking to someone else, I'd get a barrage of messages. I think he was monitoring my online activity and saw me being online as evidence I was cheating. When, in reality, I was talking to a friend or asking my son to pick milk up on his way home.

He eventually dropped other hobbies and friends (despite me and others advising against it) so that he was always available to see me if I was free and felt hurt that I didn't do the same.

He took that as 'evidence' that I didn't care about him. He used to say that all he wanted was for me to love him. And I did. Very much (I still do if I'm honest) but he was constantly looking for 'proof' that I didn't.

But no, you're right, he did find it difficult to manage strong emotions.

He did tell me sometime later that his previous 'relationships' hadn't lasted more than a couple of weeks for similar communication issues.

It's frustrating because it feels like he was so determined to be a victim that he was constantly setting traps and looking for evidence but I know it's not really like that. But that's how it felt. And essentially what happened, I felt like I was walking into traps constantly

What a shame- for both of you. Chances are, once you have been 'achieved' he will focus elsewhere- but that is equally devastating, because you feel invisible. Honestly, lovely though he can be, it would never have been easy.

It's a shame with an ASD diagnosis he wasn't able to get clearsighted and independent advice on handling his relationships. Somewhere he could complain about how abandoned he feels when you take an hour to reply, and helped to put that into perspective.

It is a shame. Yes, quite possibly that would have happened. I don't know if he would ever have felt that he'd 'achieved' me though. Either way - it would have been unsustainable.

I think he was badly let down. He was only diagnosed 4 years ago and received very little support. He's just been managing it on his own.

I was able to support him and I think that exacerbated the problem rather than helping really.

It's just left me with such a confusing mix of emotions though. I miss him; I still love him; I'm so cross with him... I'm staying in again tonight. I haven't been out socially since we split up because all my 'socialising' friends and acquaintances were mutual friends. I don't want to go and upset him; I don't want to be ignored and end up leaving after half an hour in disgrace; I don't want people to think I've got a nerve turning up after how I've treated him.

All my other friends are busy with their families as it's Friday night.

It's just had such a big impact beyond us splitting up.

To be fair to my DH, he has face blindness. So, he can't be expected to tell when our then-5-year-old with scary asthma was blue. He can't see it

Vivarium what a scary situation and you were absolutely right to know that you were the only one there who would act in a situation like that. But it wasn’t face blindness that made him not able to see it.

I have prosopagnosia, or face blindness, and it doesn’t mean you can’t ‘see’ faces just that you don’t recognise people by them. He would have been able to see the blue, he may not have been able to see that it was his child but he would have been able to see that the child needed attention if it was just face blindness affecting him.

*I think he was badly let down. He was only diagnosed 4 years ago and received very little support. He's just been managing it on his own.
*
This is really important to me, Ex.

If I insist that DH gets a diagnosis -what then? Services are stretched, there are loads of people with AS traits which impede their lives - not mine, not objectively speaking.

He holds down a professional job at a senior level, he's "happily" married, he's not depressed - what help does he actually need?

So, what is the point? And, also, because this is so SUBTLE (unless you live with it) what if they don't make the diagnosis? Then I'm just a mentalist nagging spoiled wife.

Nothing useful will come of my DH getting a diagnosis, not really.

Dunno, homebird - maybe there's other explanations for it.

He is absolutely unable to see DS breathing faster and colour changes. Perhaps that's not related to the face blindness, perhaps it's just the usual "doesn't know what to do, so does nothing"

IT's academic, I guess. It'd just be easier to forgive if I could label it as another "not his fault" thing.

Vivarium My understanding is that they don't diagnose you, even if you meet the criteria, if you are not experiencing 'significant difficulties' in your life that might be helped by a diagnosis. As your husband is married and holds down a good job, he might not be diagnosed even if he meets the criteria.

My ex was encouraged to go for a diagnosis by a friend of his who had an autistic child and she recognised a lot of his traits. He's very 'unmanaged' and quite chaotic. And definitely experiences 'significant difficulties'.

I went out this evening with a couple of friends and he was there. He spoke to my friend, who he's met a few times, but completely ignored his wife and wouldn't even look at me.

It's hard but I think for me that gave some closure.

I think the 'useful' that would come is in knowing that there is a reason for him being the way it is. Almost having it 'validated' but, at the same time, it won't actually make any difference. There just isn't the support for adult autistics who are functioning. My ex looked into support groups initially but found the adults attending them were non verbal and completely disinterested in connecting with other people there.

Your husband is 'lucky' that he has you to help him navigate the social difficulties etc. The problem is that that doesn't help you.

Evening all. Are we all having a shitty, boring, weekend full of routine? Or just me? I nearly started crying this afternoon i was so sick and tired of literally doing the same thing every saturday. I feel shit because i am actually thinking of joining some kind of online 'please be my male friend' group. I just feel so invisible and alone.

You’re right Vivarium in that it doesn’t make a difference to not being able to know that your child is safely responded to. It is easier to have something that they can’t help to blame.

@theex that’s interesting about diagnosing. My H definitely presents well. Runs a huge business (obsessively) and has some friends. But whether he likes it or not he fulfils so many traits.

I told him I want a divorce. He is refusing to accept it. He has now moved on to my parents & wants to meet with my Dad to give his perspective! My parents refer to it as ‘Crime & Punishment’

Two friends have independently cited ‘Sleeping with the Enemy’ as how they saw my life. I could cry for the lost decade but I have two utterly perfect DC who I love with all my heart. I just wish they had a great Dad.

@wizzywig could you get out and change up the routine for your own sanity? I know it’s so hard xx

wizzy - we had routine. I hate it. Two of the kids hate it (one is like his dad).

So, the haters now do our own thing. He does his routine, we do our stuff and the kid who falls in-between chooses.

We all do one thing together every weekend, it might just be a meal, or watch a tv programme, or it might be a day out - doesn't matter. One thing. This has been accepted by Mr Routine.

It must be really hard for him, actually. He does things in an order, everything has an order. the kids are older now, but, toddlers do nothing in any sort of an order ever. Must have been tricky for him to tolerate.

theex - yip. Academically speaking, it'd be useful to have a diagnosis. But, it wouldn't make any difference practically. DH has many traits, and they are not going to change. A label won't help me manage that. Worse luck.

He doens't manage social difficulties though - he just avoids them. Does one social thing a year routinely (his family get together) and tolerates maybe two with me.

It's a lonely life.

question, a bit unkind but not meant to be:

Has anyone found that after many years with someone with (almost certainly) autism with some sort of weird executive functioning problem, that they decome more disorganised and forgetful?

Very little that he does is done well and I generally have to check it, from dressing the children in right-sized and weather-appropriate clothing to trying to organise a holiday to cleaning to ... oh so much.

It's not lack of will because he's really hard working and the one exception to his disorganisation is financial. Plus he is the same with the children, whom he loves dearly.

But after years of being told "yes ive done this" and it's only half-done, or done badly, I too have become less able to organise and more .. well actually, more stupid. It's like it's rubbed off

wizzy oh yes, routine.
Mine is now retired, and gets up at 5am every day (alarm set for 5.30 in case he oversleeps). No need for this at all. Although we’re in separate rooms, I wake when he gets up as he’s incapable of being quiet, so he slams the bathroom door, then stomps downstairs, banging the stair gate at the bottom (dog stair gate, my dc all in their 30’s and left home!) He brings me tea at 6.30 and tells me “what’s happening in the world” according to bbc news.
If he’s walking the dog (which has to be decided the night before) he walks her at 6.30, if it’s my shift, I walk her at 8ish after breakfast.
Breakfast- he has a boiled egg every single day, and is flummoxed by the fact that I don’t decide whether to have fruit and yoghurt or toast until I get downstairs.
Lunch has to be at 12MD, he has a sandwich and crisps. He tries to organise me into having the same, but I rebel often, he gets huffy.
Evening meal is planned a week in advance and is eaten at between 6.30pm and 7pm, apart from Sunday, when we eat at 4pm. It’s all set in stone. He’s already panicking because he has a hospital appointment tomorrow at 4.30pm and may not be home till after 7pm. I’d bet good money that he’ll be home by 6.30 absolute latest.

Oh and yes, Sunday mornings his sister rings at 11.20. I kid you not. He waits by the phone from 11.10. Precisely.

Sorry, that turned into a bit of a rant, but I just want some flexibility and spontaneity. Not going to happen though is it.

for us all

I think im worried that once i do things separately then i will realise how much more fun it is and it'll be the death knell to the marriage