Married to someone with Asperger’s/ASD/ND: support thread 17

[SpecialMangeTout3]

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/5355546-married-to-someone-with-aspergersasdnd-support-thread-16?page=10&reply=148665446

I feel like the wors carer for anyone who is scaffolding someone in the spectrum is fair enough.
ND is a disability. One that requires specific adjustments so it makes sense that a carer is linked to that.

I suspect most austistic allies would be very upset at that idea though. Because it assumes one is dependent on another rather than the system not being accommodating to ND.

I'm DH's carer, on a carer pension and nominee for his disability funding. I've never seen any pushback in Australia for this. It's pretty routine here to accept that parents and partners are carers. DH did have some difficulty accepting it in the early years as he saw himself as very capable. He is not.

It’s a disability that disables everyone around them. I know it’s promoted often as a super power and I want my daughter to love herself but I’m also mindful that it’s important to have lots of self awareness.

I saw Mum today and she is more mobile than last I saw her, so she's not in bed-bound relapse, but I think leaving the house is a lot of work at the moment.

When she first totally collapsed she was bedbound for about 6 months, and pretty much housebound for another 6. Very fortunately, a family friend basically moved in and looked after her for the next year or two. My dad was working abroad at the time and my mum says she's very glad of that as he would have not have been able to cope with her being that ill.

I’m sorry to be annoying. My brother has said something to me, I am unsure how to take this. He told me that the reason why he gets on better with mum is because he makes no demands of her. Also he said that his wife is favoured because she also makes no demands of her and mum likes the fact that SIL makes no demands of my brother and he is free to do as he needs. She doesn’t get upset if he works on her birthday, or forgets or just disappears. He is right in that she makes no demands of my parents and he is physically, financially and emotionally completely independent.

Someone please tell me is this normal?

It’s very difficult to navigate ME, becoming housebound/bedbound with a partner who is autistic, likes routines and can’t comprehend it’s not just being tired.
Been there, done that. And yes being in your own can be much easier in some ways 😢😢

@Echobelly i think I agree with your dh re counselling
As far as I know there isn’t such a thing as counselling for older people. But there is such a thing as counselling around chronic illnesses and, as you know, around ND. Both your mum and dad might find it helpful.
Remembering that your mum ability to go out/do counselling might make it hard for her.
Are you quite close and able to support her a bit? Or it might be more of a question of organising support for them (cleaner and maybe someone to cook/prep work so there is as little to do as possible)?

@Theydontwantme im not sure I’d say it’s normal.
But it certainly fits the best way to live with someone with PDA and/or on the spectrum.
It’s very much living parallel lives, like so many autistic people enjoy parallel play as a way to spend (enjoyable!) time together.

Whether this works for a lot of other people is a different issue. But it’s certainly part of the reason why it often works better when the two partners are in the spectrum (and are similar in the way their autism express itself)

So you live life together but completely emotionally separate. You don’t ask anything, need anything, their time or attention when it’s your birthday or you are sick etc. When something happens you don’t share and you don’t expect others to share. A life of complete demand free. I even asked my mum to help with kids on my birthday the other week and she didn’t show up. No apology, nothing. But then she couldn’t care less if you don’t show up for her birthday. There is this real attitude of autonomy of all relational values. No one makes demands and no one gets upset when they aren’t met (apart from me obviously). It’s like a business model. I like birthdays etc, I like to celebrate people and to feel loved in return. I am definitely not PDA.

I think the idea is not that PDA people never want to relate to others @Theydontwantme. The best explanation of PDA that I’ve personally found is that a perceived loss of autonomy triggers nervous system fight, flight, freeze response. So e.g. feeling that you’ve been told to do something that in a way that triggers you to feel an autonomy loss you might go into freeze and then not be able to show up. As with all of this stuff, being triggered into a nervous system response that also means e.g. you cannot communicate on this issue. Hence also entailing avoidance, pretty often?

If your Mum did have a PDA profile it’s maybe right that she would then get on better with your brother if he has no expectations of her. The idea is that when threats to autonomy are removed and someone is regulated that they will be able to better connect.

Of course most relationships rely on reciprocation which would he really hard to do if you had very strong PDA traits since then the expectation of love would feel like a demand which would dysregulate you. It just seems so cruel as humans are hard wired for connection at some level. It is something I am still dealing with, with DH who is now ‘openly’ PDA. That giving love and expecting it are both demands, that’s like a knife to the heart.

I find PDA info lives mostly online and like other social media it’s very variable. I am no expert though.

As an aside, I also find it odd that we are starting to see people as nervous systems only, when ofc they have personalities, past experiences etc. that all this gets filtered through.

I can’t work out how my brother has got into this position. As a mum there are countless demands my kids make of me every minute of the day. My mum did make a passing comment once that she used to just strap us in a car seat and get on with her day. I wonder if he is brainwashed or if he is pda also. I suspect he is just used to not getting anything from her. But he also works 24/7 and avoids his family and has no friends. PDA sounds awful, seeing love as a demand or supporting your family. And yes she avoids everything. Avoided the birth of my kids, never a word came out of her mouth for 9 months about how I was.

It sounds like the more I push for connection the more she backs away. She probably just views me as threat now and stays away. Which is sad.

I’ve been reading, but haven’t posted since the last thread as there have been a couple of big changes in my life (positive ones) and I’ve had to focus on myself, my work and the kids more, and less on managing DH.

But I wanted to drop in and say thank you as there’s so much wisdom in here and it really helps me feel less alone with my ND DH.

DH definitely has PDA and I’ve gone very low demand (for at least six months now) and hardly ever ask him to do anything, but he seems to see this as a rejection (even though even small demands tend to make him angry, and often lead to him listing all my faults and/or listing everything he’s done for our family).

He’s currently in what I can only assume is a “heavy masking” phase as he’s quite bouncy and jolly - similar to how he was when we met. Apart from very occasional angry lapses, it’s weirdly calm. I suspect he’s like this now as there were a couple of outbursts last year that left me with one foot out of the door, and he realised he was on thin ice. Except now he’s making me look like I’m the grumpy one (peri-menopause on my part mostly, but also he can be infuriating).

He wants to “spend more time with me” and makes out like my avoiding him is the main issue with our marriage, but of course being low demand is hard work, so I don’t really want to spend more time with him… plus I don’t have acres of free time because I have a job, teenagers, a house to run…

I’m curious - does anyone else have experience of these “heavy masking” phases and how to handle them? It’s not relaxing at all because even though you’d like to chill out about things, you’re waiting for the next angry outburst, which will come along any time you slip up and make a demand, or anytime someone else disrupts his life or asks too much of him.

Sorry you’re going through this with your mum @Theydontwantme. My mum isn’t quite as bad - she can be very thoughtful and caring at times - but you definitely can’t ask anything of her. She would take that as a direct criticism.

Everything is on her terms, she has zero empathy, and she disagrees with everything anyone else says, seemingly out of habit. The only way I’ve found to deal with her is to ask nothing of her. I guess I’ve reached a kind of acceptance that I’m never going to have the kind of mum I might reasonably have hoped for. It still punches me in the guts occasionally, but mostly I’ve accepted it. It makes you less miserable if you stop hoping for something you’ll never have. Sorry, it’s so difficult, I know.

Im sorry you experience the same from your mum. Is she asd also?

I think mis matched nervous systems can be a real issue. Especially if one is forced to pay attention to the others whilst neglecting their own as soon their nervous system becomes permanently dysregulated. It really needs to be fair system. The thing is it’s often not possible to see how bad someone’s nervous system is until it’s too late and it’s tested. My ex was very insecure and he required control over me to settle his system. Over time led me to almost have a nervous breakdown, then both of us were a mess.

We're near my parents (30 mins away), mum tends to refuse too much help though she does have a cleaner. It sounds like my dad is getting better at recognising that she needs help and was good when she was recovering from the hip op. He is of that generation that went straight from living with parents to living with wife so he is not very domestic! He did live abroad for work a few times but always had a housekeeper when he did.

In other news, had a horrible morning - DH had a bad night the night before last and was in a foul mood all yesterday. As I think I've mentioned we swap rooms each night because of his snoring and it was his turn in the spare room, where DS had slept some night last week while his room was redecorated.

I forgot I'd left a weekday alarm on my work phone for DS and it woke DH at 6.25am and stormed into our room at 7 yelling at me for waking him up. I'm very glad he had to go into the office as I didn't need more stress and neither does DS who is starting work experience today (at local stables).

@EmotionalSupportHuman dh has those phases too.
I don’t think it’s masking as such. More the realisation that he has to make an effort to meet me in the middle otherwise the marriage isn’t sustainable.

Despite all the talk about being unable to read facial expressions, not being able to read between tge lines etc…. I think not being as ‘involved’ will be noticed.
It looks to me that your dh has realised you’ve stepped back. And even though it’s probably easier for him in some ways, it’s also different and he has interpreted that as EmotionalSupport is upset. Maybe wants out so be us doing his best (to him) to redress the balance.

But I agree. It’s grating to see them wanting to do stuff together when they’ve been avoiding it (or getting angry about it) for so long.

EDIT to add
i am ‘lucky’ in that when dh gets dysregulated, he goes silent and avoidant, not angry and shouting. I think it’s much easier to handle.

I haven't been around for a while, but find I'm in need of some advice, guidance or possibly a reality check once again.
I have had a health crisis and am awaiting results from several biopsies. Dh has been gone for work for 2 weeks, he came home last night, we have been at home all day. He has yet to ask me how im feeling. He asked if I had told the kids and when my next appointment was. He spoke about work, his flight home, how busy it was at the airport.......Other than that he has been his normal non verbal self, sat on the sofa scrolling on his phone.
I need him, I really need him to be my support during this.
It's not going to happen ,is it?
Im still supposed to understand his limitations and I shouldn't be too demanding. I still have to make allowances for him.
When the fuck is it my turn?
Is a "How are you?" really too much?

She’s not diagnosed but she has absolutely no filter and struggles to understand social cues and what is and isn’t appropriate to say in any given situation. She’s also seems quite childlike and vulnerable at times. Her life is structured around routines and she’s dreadful with change or last minute plans. I’m almost certain she’s autistic.

This is really insightful. I hadn’t thought about the fact that DH can’t cope when I’m out of sorts, but that’s exactly it. It’s why he can’t handle peri-menopause.

This is so insightful too @SpecialMangeTout3. So he’s not masking as such, but recognising that he has to step up or risk a huge change he doesn’t want.

Except he’s nit worried enough to actually plan things for us to do together. He thinks he should get to suggest things and his emotional support human will organise them for him. He’s somewhat delusional at this point. I do organise things for us to do, but I’m not spending every minute of my free time arranging the joint activities he suggests. Because he’s a grown adult, who can organise things for himself… just not for me.

@Ohdostopwafflinggeremy really sorry to hear that. A simple how are you is not an outrageous ask. He may feel he has somehow already asked this by asking about what you are doing regarding the kids etc, I’m grasping at straws here. But I think asking him why he hasn’t enquired after your well-being might be the way to go. But it does sound like he’s refusing to acknowledge it perhaps. 🤷🏻‍♀️. Although he may say he doesn’t need to as you’ve already told him……I don’t know. Hugs for you.

This sounds tough on you @Ohdostopwafflinggeremy. Do you have any friends you can lean on? Or other family? I know it’s depressing but my life got a lot easier when I stopped thinking of my DH as someone I could expect support from. That’s just not who he is. He can barely handle the extremely difficult task of remembering I might expect a cake on my birthday.

Good luck with your biopsy results. The waiting is hard, but fingers crossed for you. Please phone a friend if you can. You shouldn’t have to deal with it alone.

I'm sorry @Ohdostopwafflinggeremy - I hope you can find someone else who you can talk to who can share the burden with you, and best of luck with the results.

@SpecialMangeTout3 One thing since medication and our therapy is it has been easier to talk to DH about the consequences of things like his dysregulation. I told him I was too wiped out to go to a possible thing tonight and he asked if it was because I was tired or had been too busy (I had a day off work, but other than a lovely massage mid afternoon I've ended up doing loads of stuff largely around putting son's room back together after redecoration) and I told him I was wiped out by his outburst this morning. He is slowly realising that they have quite an outsized impact on other people; he moves past it but the recipient is left feeling shaken up with adrenaline and often off base for hours if not all day.

Sending a hug @Ohdostopwafflinggeremy your feelings are completely valid. I know you shouldn’t have to, but is it possible to ask ‘DH I am really worried, I need you to listen to my concerns with your full attention?’ I also do as EmotionalSupportHuman does and go to a friend if I can’t face asking DH directly. You could tell us your worries as well? I’ve also started using a lot more things like guided meditation rather than rely on anyone else for co-regulation. Might a loving kindness one help? The Buddhist concepts around impermanence help me do much with perspective. Wishing you completely clear results ❤️‍🩹

@Ohdostopwafflinggeremy I’m so sorry. This is really shit. What you’re going through is scary enough without the added pain of having a partner who is incapable of the most basic enquiry after your wellbeing.

I suppose it is pointless asking “is there a reason you haven’t asked me how I’m feeling?” In the past, when I have had health scares, all my autistic father can do is say HE’s feeling very worried. He can’t seem to fathom that I might have feelings of my own. It’s not that he doesn’t care, as such, it’s more that he can’t comprehend another being having feelings. I don’t know if that describes your DH at all?

Or perhaps as @Pashazade said, he thinks he has asked after your wellbeing because he asked some practical questions. That’s also the sort of thing my dad would do: ask practical questions instead of emotional ones! Emotional dialogue isn’t a language he speaks. He thinks about his own emotions, but that’s all. He can feel sorry for me or worried about me, but even that is about how HE feels, not about how I feel. He simply wouldn’t be able to ask me.

It’s bad enough having a parent like this, I cannot imagine how crushing and lonely it must feel to have this from a partner.

Are there people in your life you can share with? Someone you can cry on if you need to? Or ask for reassurance. Would it make you feel any better to tell your DH his lack of emotional support is disappointing. Or would that just be a pointless or difficult conversation which you don’t need right now? I’m sorry you’re going through this time without the support you need. 🫂