Married to someone with Asperger’s/ASD/ND: support thread 16

[BustyLaRoux]

New thread.
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This thread is for those of us seeking to explore the dynamics of long term relationships with our ND partners. Some of us are ND ourselves, very many of us have ND children. It is a support thread, and a safe space, it does get emotional at times. Avoid sweeping generalisations if possible, try and keep it specific to you and your partner.
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It's complicated and it's emotional.
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The old thread is here.

https://www.mumsnet.com/talk/relationships/5299389-married-to-someone-with-aspergersasdnd-support-thread-15?page=1

It doesn't sound at all like you are being abelist @NoviceVillager if anything it sounds like you've tried very hard to make it work. There may have been masking involved, but there is a limit to how much you should accommodate, particularly if it's making you unhappy.

@BustyLaRoux i agree re the cost of having a ‘working’ relationship. I think I’ve also been clear I wouldn’t advise anyone to go down that route.

It’s more the fact that I didn’t feel I had any other choice because the stress of a divorce will make me worse health wise. Ive been severe with ME before. That meant I wasn’t even able to warm a meal up for myself, let alone cook, get washed or tidy the house. Taking the risk of going back to that level of functioning whilst also dealing with being on my own (with no support from family) just wasn’t possible.

The difference now is that I have that tiny bit more energy that means 1- I can (slowly 😁) deal with the logistics and 2- I’m hoping I’ll cope with the emotional fall out better. But it’s still a non negligeable risk.
Not even going into the issue with PIP, UC etc… that would leave me with no income at all when in my own if the government manages to get their Bill through.

Being disabled yourself when in that sort of marriage is very hard. It’s not just the fact that coping is made harder. That accommodations you’re supposed to make are harder (or sometimes impossible). It’s the fact you can easily end up being trapped in an abusive marriage just because if the financials.

@NoviceVillager i think what you’re experiencing is the fact ‘society’ expects the NT to accommodate whilst also saying ASD people just can’t change.
So the whole weight is put onto the NT partner, as if they were a parent, not a partner.

So yes you’re expected to learn about autism, techniques, accommodations etc….
And at the same time, no one is ever asking you if you’re ok. If you’re coping. If the system is working for you.

Im not surprised you have enough . That you’re burnt out.
My take is that you might need to start being selfish and put yourself first. What are your needs? What do you need to recharge? What accommodations are actually a No-No for you?

What I’ve learnt from my own musing is that it’s not ableist to say you can’t accomodate more than you already do. It’s not ableist to expect your ASD partner to do some accommodation too. It’s not ableist to not want to be a mother to your dh, rather than a partner. And it’s not ableist to refuse to accept behaviours labelled as autistic when they are/feel abusive to you.
Youre not ableist. You’re at the end of your tether. With very good reasons.

I very much agree with @SpecialMangeTout3 you’ve reached a point where you need to put your own mask on first. If your partner won’t even consider trying to meet you somewhere in the middle then there’s no point. This is going to sound truly awful but when my mum was ill with cancer everybody asked how she was or how my dad was. Nobody asked how I was and my mum was dying. I needed someone to care about me as well and this was 40 years ago when charities to help kids cope didn’t exist. It’s often very hard for the person without the condition who is having to live on the edges and be concerned. We are all only human and there has to be a limit to what you can carry and still function. Luckily now I have a tribe who help me when DH does stupid shit and I can vent to them and he has worked very hard to figure himself and his behaviours out. But if he hadn’t or wouldn’t / couldn’t I’m not sure where I’d be.

I felt trapped due to the financial circumstances, me unable to work as DD not in school and with her DLA renewal coming up next year there is no guarantee that we'll get the same awarded which might affect my Carers Allowance. But perhaps there comes a point where taking the plunge is the only option, I certainly feel I'm at that point although I may also need to take my time to plan for the next step.

Although I don't have ME I do wonder if these relationships put an extra drain on our health and maybe once you are out you might find you have a tiny bit more energy? Maybe look at what options there are for support for when things are worse and you need someone to come over and warm a meal and making sure basic needs are met. I have very little support network around here so can relate to the fear of being isolated and unwell. But, often a source of support comes along just when things are at their bleakest. Maybe there are plans that could be made in preparation for those worse times?

I feel you re DLA. Those things are a nightmare aren’t they?
Ive just sent the papers back for my PIP renewal. I expect ill have the interview in 6~12 months with the new ‘rules’ in place (unless the government does a U turn again).
Its scary.

And YY about the impact oh his behaviour on my physical health.
Knowing how much better (if any) it will be wo him around is so hard to define. Same with the effect of counselling, EMDR etc…. really. We know trauma affects our physical trauma but does dealing with trauma or eliminating it solves those issues once they are there? I genuinely dint know. I mean we don’t normally expect reducing stress to cure a heart attack iyswim. It just helps reducing reoccurrence. 🤷‍♀️🤷‍♀️

I've read some of The Body Keeps The Score which seems to suggest that your neuro pathways are permanently altered by past trauma. But not being hypervigilant must
mean some relief to stress levels, hopefully!

Being hyper vigilant all the time is exhausting and definitely takes its toll.

I don’t know if this is similar, but the last few months of living with DP and his son made me mentally unwell. Son was given such free rein to take over the house. I felt like ghost in my own home.

Son decided he wanted to be the family cook. So he would be make a big show of it. He just wants to be DP basically. Started quaffing the expensive wine, pouring himself a glass and swilling it round, remarking on the tasting notes (he’s 14. It was unbearable!!!). The kitchen would be a bomb site. The clearing up not really done until late the next day! The house full of meat smells (which I detest!). Kitchen out of bounds for about 12 hours or more what with the quaffing and the smell and the noise and the mess.

Then after dinner (whilst leaving the kitchen in whatever state), him and DP would move onto the lounge and watch their sci fi. Lights off. Volume on triple times the normal. I’m deaf and even I can hear every word from another floor in the house! Our bedroom was of course above the lounge. So I can’t use the lounge. Neither can my DC. I can’t go to sleep.

Then at about 11:30pm, when the sci fi fest has finally ended, he moves onto the bathroom. Stands outside the bedroom door very loudly talking with his dad for a bit. If I had managed to get off to sleep by some miracle of course now I would be woken up. He likes to have late night long hot showers before bed. Helps him sleep apparently. Sets the smoke alarm off. Is in there for half an hour. Water running. The shower is, predictably, next to our bedroom. So the shower and the fan (noisy) are of course going for half an hour whilst I am still trying to get to sleep. It would be well past midnight by the time he’s finally finished. I have to get up at 6. So less than 6 hours sleep a night for me.

Come downstairs to make coffee. Oh look. His cooking mess from the night before!!!

It made me so on edge! DP wouldn’t hear a word of complaint about any of it. If I complained about the TV, they’d turn it down a couple of notches and then say it’s too quiet for them to hear (not true!). If I complained about the shower, DP would roar at me “I’ll tell him he isn’t allowed to shower shall I???!” Nothing I said or did would have any effect other than make DP defensive and angry. His precious prince is the most inconsiderate, precocious, entitled little (insert not very nice word). Once he kicked my DD in the head (twice!) when they were on the trampoline and she came in sobbing her little heart out. Obviously I cuddled and comforted her. Son came in and saw me cuddling her and trying to calm her down. DP later had a go at me!!! Told me I should not have comforted her in sight of his son, as this would have upset him!!!! I should be more sensitive to his needs etc. This is the level of consideration we are all expected to show the son, whilst he shows no care or consideration for anyone else. Everyone (me, my kids, DP’s other child) have become so fed up of being second class citizens. Of having to ensure the son is catered for in every way. It’s done him no favours. We are all utterly resentful. One of the main reasons I moved out, and in fact our final argument int he house, was about the son.

I now find that if I go to DP’s house and son is there I have an immediate visceral reaction to either seeing him or hearing his voice. It’s a physical reaction. My shoulders tense. My jaw tenses. Its immediate. I am instantly on edge. I just want to get away. I smile and I’m civil and make chit chat of course. But it’s all I can do not to run out the house. It’s come to the point where I can’t bring myself to go to the house if I know he’ll be there. I forced myself at the weekend. And DP and I had to eat standing up in the kitchen because he had his little gaming men spread out over the dining table and of course he can’t possibly move them! We had to wait until 10pm for him to vacate the lounge as he NEEDED to finish watching his three hour long programme.. I’d gone over (forced myself even though I knew he was there) for a nice dinner and some TV and a cuddle. Just goes to show nothing has changed. He has still taken over the house and everyone else comes second.

Its fine. It’s not my house. I no longer have to creep about in the shadows, sleep deprived and holding my tongue or else know I’d be shouted at.

I realise now the stress I was living under. I felt on edge all the time. I was tense (physically) all the time I was in that house. I didn’t realise the mental effect it must have been having on me. To the point now where the sound of his voice triggers me! (I hate the word trigger, but that’s exactly what it feels like!).

I know it’s not his fault. I know he is a child. I know this is all on DP’s parenting and prioritising of him and his refusal to acknowledge the effect this had on everyone else. Sadly the son is now the most self focused individual I have encountered. He constantly goes on about his feelings and needs and how his mother isn’t able to meet these and how he’s frightened of her. It’s all lies. She puts boundaries in place and he hates it. So he’s decided he can’t live with her and needs to justify having moved in with his dad almost full time now (contrary to the court order). So he says he’s frightened of her and she doesn’t love him. She sends him lovely loving messages, saying please come home. I miss you. I love you. He pours scorn on her for doing so. Laughs at her. Says the messages make him angry. The way he speaks about her is diabolical. I have no love for the woman, but I can entirely see what’s happening and I feel incredibly sorry for her.

DP of course encourages this, because it means he has “won”. I just can’t tell you how toxic and awful the whole thing is.

I told DP that he had created a proverbial monster and I want not to be around any of it. I will come to the house when son isn’t there. I don’t want to take part in any conversation about how awful his mother is and how she doesn’t care for or love him and poor son this and that. I don’t agree at all.

I suppose us all discussing the mental stress and how it impacts really resonates. Because I don’t think we realise until we get out just how much stress we had been living under. To the point where I now get a traumatic response (freeze or flight response) even from a sound. Which makes me feel awful because he just a child of course. The effect and combination of DP’s parenting and son’s autism nearly broke me. And I really feel the after effect now I’m away from it. Don’t underestimate the mental toll all of the stress you’re under, the eggshells, the suppression of your needs, your voice, all of it, is having on you. When you all warned me that staying in that house risked my physical health I thought I was immune. I wasn’t. I have a chronic pain condition which was being managed. But a month after I moved out the pain is back now daily. I attribute it to the stress finally being relieved, but the physical manifestation now coming out.

It’s really difficult to talk about this IRL. A few people really get it. They completely understand and don’t judge me at all. But the majority are like “but he’s a CHILD!!!!!” And heavily judge me. Including my own therapist!!! (Who I have stopped seeing). Because this is the same as when we excuse the abusive behaviour of an autistic partner. We are told we should endure. We should be more supportive. It’s not their fault. We are made to feel guilty. They have a disability. Etc etc. And all the while we are being abused!!!! It’s the same here. He may be a child. I recognise it isn’t his fault. However, I did make a ton of allowances. I did endure. I was sympathetic. For years. And now I am scarred emotionally and seemingly physically by the experience. Amazing how judged we are for expressing our pain over something which is no one’s fault.

Happy to have found this thread! I have found Empowerher NT Circle community to be very helpful on this journey of neurotypical with asperger/ ASD spouse

Gosh @BustyLaRoux so glad you managed to get yourself and your DC out of that house. And yes, I agree that we don't realise how much stress we live under until we are out of the storm. And although your DP's DS is a child it's stillnkt ok for him to domineer the household like tgat, ND or not. It's a tricky situation and it must have taken humongous strength to walk away in the end 🫂

Had an interesting conversation with my DM last night, around how H's open disapproval and dissatisfaction/contempt even over daily stuffs, that DD and I have had to live with, has affected our self worth/self esteem. DM has seen him in action and as I've mentioned before, he's even made her cry on a couple of occasions, and my DM is not one to cry easily!

I'll try to explain what I mean. Not sure if it's his ND or not but H has this ability to make you feel like you are not enough, that you are doing things wrong/not his way, that he does not approve of certain TV programmes/hobbies which he sees as beneath him and that he basically has the right to openly communicate this as if he is some sort of superior being. For example, I might have cooked a full on meal with plenty of choice of vegetables yet he will drop some comment on there not being any peas. Or DD will be watching her favourite YouTubeers and H will comment on how annoying and silly the youtuber is. Or ask DD if she wants to go out and do something that she most likely will feel unable to do and then sulk and huff so she will feel bad about being unable to do whatever he asked her to. There are probably plenty of worse examples but these are the everyday things. It's extremely wearing and I'm definitely working my way out now but it's quite eye-opening when you start to see things with a bit more clarity.

I've still got some health problems related to the health scare a few weeks back, absolutely certain this is stress from living like this!

@BustyLaRoux I dint know how you manage to cope for so long in those circumstances.
Id have strangled your DP (because yes he is a child blablabla and the responsibility falls squarely on your dh shoulders there).

As for the counsellor … I find they usually fall into one of two camps. Those who have had ‘some’ training on autism or are sort of aware and automatically assume you’re the bad guy.
Or those who don’t and see the behaviour as abusive only (my own therapist speciality is trauma and she never much sees dh behaviour through that lens - his behaviour creating trauma).

Thank you @ItReallyDoesntMatterAnymore. The strength was getting through all the admin and organising and finding somewhere and securing it and packing and worrying about money. Not deciding to move out funnily enough. I just knew that last argument was the straw that broke the camels back. I could literally feel it. The decision wasn’t difficult in the end. It felt like a lifted weight!

There is a lot practically to do. Perhaps this had felt too overwhelming before. Perhaps I’d wanted DP to scoop me up and say it would all be different if we gave it another shot.

For those of you who have decided to leave but have yet to physically get out, do you feel like you’re in danger of wavering on your decision? Or do you feel like the door has finally shut for good and you cannot conceive of changing your mind and staying now?

On the topic of counsellors, the Relate counsellor I went to see didn't seem to have training in either autism (which I maybe wouldn't expect) or abuse. I mentioned the book Why Does He Do That and she'd never even heard of it. I know I wasn't open enough to tell her the extent if H's behaviours but it very much felt like she was not picking up on the low level abusive stuffs I did talk about. And then she kept talking about how difficult it is to get housing, how it's almost impossible and how maybe I could declare myself homeless? It made me scared to be honest and probably why I lost my resolve to remain separated and allowed H a second chance.

Nooo! She sounds woeful. The housing is hard. I won’t lie. I was just very lucky that the perfect house came up when it did. There are lots of other houses but none of them have seemed as right as this one. And that was really really important to me. But that doesn’t mean it’s impossible. It’s just a case of looking hard and making some compromises. Even this house has some compromises. The bedrooms aren’t big and the garden is tiny! It was also top of what I could afford. But know what you’re willing to compromise on. Accept that there will be compromises. And that money will be tight. I now closely monitor every penny I spend. Every penny! I’ve never done this before. But do love a spreadsheet so it’s almost become a little game I do every few days. I’m quite enjoying being careful and considered with my spending!!

The UC is one of the most stressful things I’ve done. They really don’t make it easy. Most of the anxiety I had was related to this. I’ve not claimed before so it was all new and overwhelming. I felt like they thought I was trying to cheat the system. I was just imaging it I guess. Actually the lady who interviewed me was lovely! Perhaps if you’re a seasoned claimant then all that is taken in your stride.

Don’t be put off. Keep looking until you find the right place. But be ready to go when you find it and need to make your move quickly. You will get there and it will be worth it. You’ll have your life back!

For those of you who have decided to leave but have yet to physically get out, do you feel like you’re in danger of wavering on your decision?

It’s not wavering out of the decision as such. It’s more that I’m so used to dh behaviour and to accommodate (even if this accommodation means ignoring) that the urgency feeling fades and nothing happens. Think dissociation and derealisation.
Its not helped with me being physically unwell too.

In some ways, I’d say, if you want to leave and feel angry at your DP’s behaviour, stay angry. Use the anger to get moving. It’s easy to get ‘too used’ to things.

Yes I can see that. The impetus sort of fades and before you know it you’ve settled back into the rut. Anger is a useful emotion when it comes to motivation.

I felt like they thought I was trying to cheat the system. I was just imaging it I guess. Actually the lady who interviewed me was lovely! Perhaps if you’re a seasoned claimant then all that is taken in your stride.

From my own experience, the system is set up with the idea you’re going to cheat. It’s not your imagination.
It’s also a nice tick box exercise where you need to know what to say where. Knowing that helps. But it doesn’t make it ‘easy’.

Thanks for saying that. I felt like I was being driven mad. Like I was a criminal trying to hide things. It was all so intrusive. I get that they don’t want people claiming when they shouldn’t. Although how anyone gets away with that I have no idea. I felt like someone had been through my underwear drawer!

All useful to know about claiming UC! I'm hoping that being in receipt of DLA and Carers Allowance will mean I have some proof of why I need to claim. Also a bit 'hardened' by the DLA application process maybe.

Housing is hard to get around here but there appears to be a lot of flats with advertised as reduced rent in our nearby town, all of which would be affordable. Maybe the market is slowing or it's just that town.

Although if H was to buy me out with my share of the equity (at least 50% if not more) I could maybe even buy a flat in said town. Not sure how that would go down though!

I love a spreadsheet too @BustyLaRoux it must be nice to be in control of spending too. Your house sounds lovely and although there are some compromises, I'd imagine it's a peaceful home complete with it's pink kettle! 💕

Oh gosh what a dream! To buy a little flat of your own. It’s totally possible though. He will have to buy you out eventually. For now though, it’s wonderful you’ve started looking. And that you can afford something! Next steps dare I ask? Are you able to organise some viewings? Have you stated your intention to DH to actually move out? Does DD know?

Also pink fluffy towels (my DS gets a different coloured one!). And a little garden full of pots and plants. Just sitting out there looking at them makes me feel so happy. I wish I could invite you all round!!!!

👋