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

This is very much how I feel - sometimes I think 'Oh, maybe if I was a more dedicated mum I'd have given up work and given every spare moment to topping up his school teaching' or something. But I know I couldn't have done that, I was never qualified to do so either subject-wise or having the patience and application, nor could he have been learning non-stop.

DH keeps regretting 'we left it too late' or 'didn't do enough', but honestly I feel we'd had to have been superhuman to have been able to do enough and if DS has problems with his memory there's no guarantee teaching him more stuff would have stuck.

I feel the same with my daughter but I’m mindful not to project my potential onto her. I heard this all through school, I had so much potential that I have never fulfilled. But it was never my potential because I was actually undiagnosed and struggling.

Is there something fun they could do together instead. If it’s late I don’t think the nervous system would allow any learning to happen. But doing something fun would help the connection and lower the nervous system. We recently bought a hot tub and my daughter loves the bubbles. There is no point pushing learning to the point his nervous system goes active. That’s what ruined my life. I have a degree and a master but the whole situation destroyed my nervous system and I’ve never really been able to work much.

There’s a concept called ‘flipping your lid’ that was explained to me by a psychologist. Don’t know if you are aware of it or if I’m explaining it properly!! Basically imagine the brain in two parts. Your basic monkey brain - all emotion and impulse - is in a box. And then a lid containing all your logic, reason and capacity to learn goes on top. When you’re angry, scared, being shouted at etc the pressure builds up in your monkey brain and ‘flips the lid’. You can’t learn, make rational decisions etc. until everything is calm and you can put the lid back on. That’s why we find it hard to think straight when we’re chronically stressed. It’s like @Theydontwantme says - it’s about keeping the nervous system as calm and steady as possible to enable learning to take place.

That's a good analogy - I've heard of the 'monkey mind' before, but not the lid flipping thing, but I think it might be good to explain that one to DH and DS as it's what's happening to them both in these scenarios and it's a good analogy.

I ended up today ringing the free counselling line we can access through work, basically just to have a good cry TBH. She's sent me some links onto other stuff and they can arrange further counselling, though I'm not sure if I need it.

I think I've realised the ideal situation I'd want - I'd want DH to apologise to DS for accusing him of deliberately avoiding work/learning and getting angry with him and that he understands DS has difficulty remembering things and keeping on track. And to mean it. If he could do that it could remove so much stress from DS. I'm not saying we shouldn't support DS and make efforts to ensure he revises and learns etc. I'm saying no one should be angry with him when he falls short because... he has a learning difficulty.

Could anyone give me any advice on this. It’s about ND kids. So my kids are driving me to distraction, I feel like my heart is going to give in from the constant arguing. My eldest is diagnosed ADHD but the youngest will definitely be right behind her. They can’t be in the same room, not even for 2 seconds. They can’t sit next to each other, they can’t venture in each others room or literally breath on each other. They are both rigid and can’t get along at all. Now one is only a toddler and there is only so much I can do verbally. The 9 year old is old enough really to stop some of this behaviour. I’ve told her over and over to walk away, we don’t put hands on each other. The mornings before school is becoming unbearable. I don’t know how to do it anymore without the house descending into war. Any suggestions? I feel like shutting them in their rooms, eating breakfast in them until it’s time to leave for school.

That doesn’t sound like the worst idea
Mornings are already fraught and stressful enough without any additional spiciness

Afternoon everyone.
I have been waiting on the results of scans and biopsies and it turns out I do have cancer.
I am waiting to start treatment soon I hope.
I told the kids and dh together. Dh's main concern was if the treatment would affect my ability to drive?????? Meaning would he have to alter his work schedule to do those duties. My son actually said "WTF dad?"
Later on he said even though dd seemed a bit distressed, ds seemed fine. WTAF.
He still hasn't asked me how im doing. Not once. "So WE are waiting to hear about treatment now" has been the closest he has come to concern.
He called tonight ( he's away at work) to find out own my appointment with my doctor went yesterday. I told him. He immediately changed the subject to what the kids were up to this weekend. I ended up saying "I'm fine by the way, thanks for asking" He said "I'm sorry" like he'd forgotten to pick up milk or something.
I understand if he is in denial, if he can't cope, if he is scared, but right now.
I DON'T FUCKING CARE
I absolutely cannot deal with our disintegrating marriage and fight cancer. Even i don't have that much energy.
I need to ask him to move out, at least for a while, I think.
I would love dh to be the one I can lean on right now, but he is not. I cannot hold his hand through this.
I think I just need reassurance that asking him to leave is a rational request.

@Ohdostopwafflinggeremy I’m really sorry it has turned out to be cancer. What truly shitty news that is. Sending you a big hug. How are you feeling? Do you know much about the treatment plan? You’re justified in needing whatever you need right now 💐

Really sorry to hear that @Ohdostopwafflinggeremy as Windy said, do whatever you need to do for you right now. Good luck.

Sorry to hear that @Ohdostopwafflinggeremy, as has already been said, do whatever you need to do in order to get through. Put yourself first. 💐💐

I’m so sorry @Ohdostopwafflinggeremy , do you have anyone else in your life who can step up and focus on you and your needs right now?

@Ohdostopwafflinggeremy ouch! That must have stung.

This is a really hard situation and I think the best you can do is chose yourself.
If that means asking him to leave, then so be it
if that means, him staying but you ‘ignore him’ (as in refuse to rely on him etc…) and just take what he can give you (let’s say taking the dcs to school, whatever he is able to step in) then that’s great too.
Youre not obliged to play the happy wife that is ever so grateful for her dh support in those difficult times.
You don’t have to stay because that’s not what you do in those circumstances. Nor do you have to leave because of his shit behaviour.

You deserved someone who is able to be there for you, in a meaningful way to you.
Those biopsy results are shit. I can only send support through the Internet waves and I hope you have people in RL you can lean on. Rely on them, not your dh.
I’m sorry 🫂🫂💐💐

So, so sorry @Ohdostopwafflinggeremy 💐🫂

Going through stuff alone is where this situation really really hurts and where the hole really starts to gape. I’m sorry @Ohdostopwafflinggeremy. I think the biggest trauma in life is having to do the scary stuff alone. It sounds like your H is actively traumatising you further and your brain just wants this added trauma away.

Shitty news @Ohdostopwafflinggeremy . I’m sorry it’s what you feared. Sorry DH can only focus on the practical. You may as well ask him to speak Norwegian. Emotional language is not something he can access. It’s shit. It’s less than you deserve xxx

I'm sorry to hear that @Ohdostopwafflinggeremy - just one thing piled on top of another.

I've just found out a friend is leaving her long term partner for similar reasons - their partner is, I am sure, on the autism spectrum, and my friend is also having cancer treatment and she has found the soon-to-be ex just can't give her the support she needs.

@Ohdostopwafflinggeremy
What devastating news. It must be such a shock. This now becomes self preservation and if being around him causes you stress and upset due to his lack of reaction and support of course you can ask him leave.

I find the physical presence of my husband causes me a level of unease which increases the more time and proximity we spend around each other. I tighten, clench, start scanning for threats, I’m just generally on guard being around him. If you have any of those feelings then you need peace and serenity now to carry you through this period where you must surely use all your energy to focus on yourself.

im so sorry to say that there are some people that cannot orient around anyone but themselves, intentionally or otherwise, the impact is still the same on the recipient and betrayal can come in the form of medical betrayal. You are frightened and vulnerable worrying about your very life, and it’s in this moment you look to your person for support, trusting you can lean on them, and then when they aren’t there for you, you feel utterly abandoned. Like you don’t matter at all. It’s heart breaking. I’m so sorry again.

I do hope you have the strength to find peace and a place where you can just look after yourself now. Thinking of you and wishing you to take good care and strength and courage for the journey.

Thank you all so much for your lovely messages of comfort.
It has been a very long couple of months, with tests, scans, biopsies and meetings.
The shock of it all hasn't quite worn off, but the kids (18&20) and I are able to talk quite openly about whats going on. I had tried to keep as much as possible from them initially as I didn't want them going on line and scaring themselves. They both wanted to know everything when I finally got my diagnosis.
I am scheduled to start Immunotherapy soon which by all account is very effective.🤞
I have absolutely no idea whats down the road, I can only be positive and hope.
Dh is at work for now (2weeks away) and it has been calm and peaceful. I don't want him home. It's a simple, clear, concise feeling. I just dont want him here. The kids don't want him here, and in a twisted sort of logic I don't think dh wants to go through this with me either. Way to many unknown emotional moments for him.
I have another week of peace before he comes home🪷

The last part of your paragraph is just so so so sad and it’s got to me for you. In twisted logic he doesn’t want to be there for you either. This just hits the nail on the head, the truth under all the masking, the false hope bubble just popped. You are right! I’ve been saying it over and over to myself, perhaps I don’t make it clear enough, perhaps they can’t understand me, perhaps it’s just a misunderstanding of communication. The sad truth really is, they just don’t want to.

@Ohdostopwafflinggeremy is there anyway you can facilitate him leaving, so he comes back to a fate accompli, which it sounds like he may ultimately prefer. I know you shouldn’t have to do anything but if you could get him gone then it sounds like life would be much easier, organise rentals to look at or tell his parents or something….sorry grasping at straws in the hope you can find a way through that leaves you in a better place on at least one front. Hugs.

so much truth in your words. They don’t want to and they’re not going to, no matter how much you plead, beg, cry, shout, pretend, encourage, understand, reflect or forgive. It’s never ever going to be what you want. So it’s best to stop the pretence. Indeed it is.

I shouldn’t really say they don’t want to. I don’t think they are able to. It’s just not in the tool box. A person wouldn’t give much thought to a broken or damaged appliance, I think it’s similar.

I am wrong to say they don’t want to as I don’t think it’s intentional. I don’t think they have the tools to consider others. I know my daughter says to me sometimes “why do I have to care about your feelings”. It’s fundamental to any relationship to be able to consider the other person. I tell her if you want friends then you need to do this,
otherwise people won’t like you. I see it in my mum. She won’t consider if someone feels left out, she won’t make them feel comfortable. My brother has no friends and only a family because they don’t hold him accountable, but he considers no one but himself. Will leave half way through family occasions to go to work and take his family home, no sorry, just off he goes.

I am ND but I over consider to my down fall. I am so afraid of getting it wrong. My mum, completely blind. That’s why her friendships fail because no matter how hard she tried to mask it she just can’t consider anyone but herself. It’s quite shit once the scales fall and you left with self oriented people whom you’ve over invested in.

I’m so sorry you’re having to go through this, it’s so painful to have to work through this realisation. It’s your whole experience of that person that is affected. That will include looking to the past and to the future. I really sympathise. Achieving this insight really hurts but hopefully in time this awareness will help you stop wasting energy and hurting yourself waiting for a relationship change that can’t (or won’t) come.

I’ve found it a process of years to try to stop hoping I will ever find the kind of behaviours and relationships that I want to have, with some of my closest people. And it’s getting more urgent to try to close that emotional door as some of these family members are ageing fast. I haven’t managed to do it really but with this in mind, away from those difficult relationships, I do try to build up my interpersonal relationships with different people who do have that capacity.

It’s a low bar, just finding some people to have contact with that are able to reciprocate emotionally in a way that doesn’t make me feel hurt and rejected. But it’s difficult to be clear minded about what that looks like and to recognise it and look after it in your healthy relationships, when the opposite type of interaction to what you’ve become used to.