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

I'm so sorry to hear hiw badly your health have been affected @Mini2025 and @RosiePosie007 and yes I do believe that the body keeps the score 💐

I’m again so so sorry that you’ve had such an appalling time. You’re right, they can do it with everyone else because that’s the social expectation yet with us, it’s like living with a tyrant. I’ve made so many excuses for the ND and all it’s done is damage me, while he’s completely fine.

Im going to post something which I hope is ok:

https://bepartofresearch.nihr.ac.uk/trial-details/trial-detail?distance=&location=&trialId=58476&utm_source=chatgpt.com

im not sure if it’s relevant but wanted to post in case. You’d be able to search for your specific diagnosis to see if there’s anything out there. I hope I’m not overstepping. Just would like to help.

it’s sad what you write about your DD. I don’t know if she’s open to therapy but I’ve found this to be the key to gaining the insight to break the pattern. You need someone very good and I’m happy to recommend my therapist. She has been amazing. As Mangetout says above, the neglect as a child can be carried on into adulthood and that’s great awareness. We need this awareness early on though, not 20 years too late.

I’ve been an in patient at a mental health hospital for 6 weeks and I’ve done so much therapy both group and one to one. It’s been life changing. I needed this so much earlier on.

I really hope you have support for such a difficult period ahead Rosie. My heart goes out to you and your children. I will be thinking of you all.

When people say that ND people are sometimes looking for a human bin what does this mean? I haven’t experienced this but in my experience they are just looking for people to fulfil their needs and they have absolutely no idea that this is not what people are for. They are like the main actor and everyone else needs to act around them. If they upset you then they can’t accept your reaction and get defensive because they can’t tolerate their own feelings unless they are happy or it’s about them. It’s them them them and they are bewildered when it’s not.

This is it in a nutshell:

“The relationship starts and ends in the exact same way. They appear completely smitten and emotionally intelligent. Gradually the shutdowns start and the argumentative rigid thinking is revealed.”

So reassuring your DD is ending the relationships. That maybe gives you hope? It’s taken me over 20 years to reclaim My freedom.

I agree that they are unable to self-reflect. The amount of times I've asked DH to do this, to consider the effect he has on others. Yet it's impossible for him to do. Only when he experiences a sense of loss does a change in behaviour occur but then the moment he feels secure again, out comes the anger, aggression, rigid thinking, criticism etc.

I'm so tired of it. My body is so tired of it and I've this poor body down but repeatedly filling it with adrenaline and cortisol.

I didn't think it would ever be me writing this on this board as I'd seen other people manage to escape but I kept telling myself it wasn't that bad and I could cope.

Don't be me folks. Get yourself a very good therapist. Try a few. You don't have to stick with the first person you try. And start talking. Because no one else will listen to your pain, you have to shut it all down and keep on pretending on auto-pilot that everything's fine, when clearly it's not.

Being in the inpatient facility and telling some of the other patients, nurses, healthcare assistants, therapists and other staff what has been going on was SO validating. Everyone, without fail, was shocked.

We put up with far too much with a very high cost. I don't know if I'll ever sleep again without drugs, I don't know if I'll ever come off anti-depressants. I don't know if I'll successfully wean myself off benzos.

I never thought this would be me. Watch out for auto-pilot. It's a highly damaging place to be of pretence but ultimately it's death by a thousand paper cuts and it's a form of self-hatred/ self-destruction. I wish I could warn everyone on this board where this leads because there are very very few happy endings. Your special someone is NOT going to change.

You only have one life and time is a currency we never know how much we have left of. Use it wisely.

Right I'll stop after this but in the words of my psychiatrist:

"You have sacrificed yourself for the sake of your family and now you in a very vulnerable position".

Please please please, don't be me.

I’m really sorry. I was abused for 12 years and I have autoimmune issues and terrible fatigue. I try and tell people that my relationship did this to me but people don’t understand. I am afraid that I won’t live a full life with my kids. It keeps me awake at night about the damage done to me. I’m really sorry and I hope you get some deserved respite.

@Percypigspjs from what I've discovered (at least for me) it seems to be about immune system and nervous system regulation. I went into a state of hypervigilance. My nervous system couldn't calm down. I went into hyper-anxiety and couldn't sleep, couldn't eat, I could barely walk by the end. My body truly kept the score.

You might consider something like the Gupta program. It's £500. Some people have found it very helpful though - some for, some against.

It's about helping your body feel safe, after feeling so unsafe for a long time. In the inpatient facility we did a lot of work on breathing, understanding where anxiety comes from, depression also, calming the vagus nerve, understanding trauma, getting therapy to release it. I can completely believe your relationship did this to you. Sadly.

There is another person called Dorian Soames I have found online through Facebook. He talks about nervous system regulation a lot and works with auto-immunity. Again, I haven't used him myself. He posts his success stories but having worked with coaches in the past, I know they only post success stories, not the ones who didn't work out.

So he has some successes - but I imagine he has some failures too, again I can't vouch for him. But when we are desperate, we're ready to try anything. I may yet work with him in the future.

Aura, an app I found has been great. I try regularly now to do a guided meditation to calm my body, to feel safe. It is $65 for the year but it's helped me a lot. I also am getting help with sleep through the drugs. They've all allowed me to function again - just. I'm still weak. I can only walk for a few minutes but slowly my strength is returning. I don't feel anything like I used to. But i'm hoping with time I may.

it's shocking just how damaging these relationships are. I have a friend/ acquaintance who has been through exactly the same thing too. Her health is also shot to pieces. Her divorce has taken 2 years. He's dragged his feet at every opportunity, determined to drag her as low as possible.

Again, she was neglected in hospital, left to get herself home, get better, no help given, aggressive communication style all the time at home, walking on egg shells. When she tried to leave, he'd woo her all over again, and so the cycle started again.

This is where I get confused between ND and other mental disorders. Can genuine ND people be this bad? Do they really have such non existent self awareness? If I approached my mum about her complete self absorption she would tell me I was the issue. But I know she is the problem, she can pick up and put down, forget you. She has no idea how to be present for anyone but herself.

And that's it, in a nutshell. They'll always get all their needs met, before you get any of yours fulfilled.

My DH is in very good health. Very fit, eats very well, sleeps well, runs his life to perfection for him.

In the meantime, I'm on 3 drugs, weak, lost my mind and body - and he didn't even call me for 6 weeks while I was away.

What does that say? Yes, pick you up, put you down, don't need you, don't really care about you.

I don't think every ND person is like this. There's a certain subset that are though and it makes a lot of ND people very upset because they can feel called out that we think everyone is like this - no they are not - and as they themselves would agree, ND never presents the same in everyone - but there is this subset of ND people how literally have no self-awareness and everything must revolve around them and only them. That subset just use others it feels. They may not realise they are doing it but to the person on the receiving end, it is incredibly draining and damaging. You hope to be loved in the way you know love but they are literally in capable of showing love like that. They must always come first.

So when you break what do they do, get another like a washing machine? They have no feelings of sadness? I can’t understand this, I really struggle. I guess it’s a cleverly adapted way of surviving for them. If they get their needs met then they do thrive. But they don’t seem to notice that you aren’t getting your needs met. I don’t get this. If they need their needs met then surely you’d understand that everyone else is the same?

do they think people’s needs are filled by fulfilling theirs. People are born to fulfill them and that’s there calling in life and should be content?

from what I've discovered (at least for me) it seems to be about immune system and nervous system regulation. I went into a state of hypervigilance. My nervous system couldn't calm down. I went into hyper-anxiety and couldn't sleep, couldn't eat, I could barely walk by the end.

This. So many of us have auto immune diseases. And even when they’re gone it can be nearly impossible to calm a nervous system that’s been stuck in this state for a long time.

Why does this happen. Is it simply by living with someone who can’t see your needs so you deny them to yourself also? Your blame your anxiety on yourself instead of the relationship and the situation?

There is a narrative around the inability to meet needs which Is toxic. They can meet needs, they met them so well we fell in love with them and married them. Later on we’re subjected to their gaslighting as they claim they didn’t know we needed a hug or some sign of care.

There is a difference between being unable to do something and refusing. The lack of empathy, and need for control can result in weaponised refusal. Many of us are surprised when our exes meet someone else. That wouldn’t be possible at all if they had no awareness.

As for their needs, I think things start to look much clearer when you look objectively at what their needs are. Zero need for affection or emotional support, a need for autonomy and control, a need to be right and to control the emotional experience of others. These needs are met easily by people with poor boundaries with a history of neglect.

But what you describe is a narcissist isn’t it?

@Mini2025 as you mentioned programs, a good therapist etc… I’d say you need a good trauma therapist that is curious enough to not stop at ‘but you’re NT so you should accommodate ND because things are so hard for them’.
EMDR is also amazing for me.

I think that the stuff about meeting needs is essential actually.
We ALL have needs. They are just extremely different from one person to the other. And when it comes to ND, theyre not ‘socially acceptable’ in that theyre very different from the usual NT needs.

eg I need human contact, communication, partnership, laugh, emotional intimacy etc… All accepted and considered expected in a marriage.
Dh isn’t keen on human touch, has alexithymia and doesn’t do emotional intimacy. Instead it sends him in a panic. But he needs time alone, quiet and spending time on his special interests etc…..

Those needs aren’t compatible and if it was NT/NT marriage, you’d say people aren’t compatible and want different things from life.

What I have learnt is that, FOR ME, I stayed because of my own conditioning, needs and fears. That’s childhood stuff. The same that a good friend if mine stayed in an abusive rekationship for too long. Or that another one kicked the father of her child out as soon as he showed too much selfishness. She’d never have accepted either my friend dh behaviour nor mine’s.

So whilst I FULLY agree you shouldn’t stay in a relationship where you make yourself disappear, where you always put yourself last, put up with crap etc etc, I feel that it’s not about ND been awful people. It’s about not being able to live with that other person needs.

I also feel like it’s important to highlight that some of us in this thread are ND (autistic, ADHD or AuDHD). What we’ve experienced with our partners cannot be generalised to all NDs. But rather reflect the complexity both of the ND spectrum and human interactions.

I’m not great with intimacy and I like “need my own time”, I find it all overwhelming at times. BUT I’m not an arsehole and I understand that these are my needs and they don’t trump anyone elses. I can’t suddenly become an intimate passionate person but I can try and meet in the middle. We are what we are but no one should control and be abusive. I think some people are just too superior and think that people who like emotional closeness and intimacy are stupid. They are too judgmental on the differences of others.

I think it’s very much about some ND people being bloody awful. Everyone should enter a relationship with equality at the forefront no matter what needs they have. It’s not acceptable to be telling ND people that their needs are more important. My daughter is ND and although she does have additional needs they don’t trump the needs of everyone else. The fact that she doesn’t like loud sounds doesn’t mean no one can listen to anything, she can be accommodated with ear defenders. She gets in trouble talking unkind, it’s not acceptable to allow this because she has needs because so does the other person who listens to what she says.

I’m not saying that ND needs are more important.

But the bottom line is that it’s a disability and yes those needs will come first.
Just like I have ME. I’m housebound, close to bedbound. My need to rest and lie down will trump most things, even if, yes, it impacts negatively on dh.
Because I simply cannot afford to not lie down/rest and for this to impact my health.
I see dh needs in the same ways. I’m not going to ask him to do stuff that will send him in autistic burnout just because that’s what I want to see happening.

It doesn’t mean some ND people are not awful. Some are. Just like some NT are.
But saying that all needs are equal simply does not reflect reality imo. Some needs are essential and some aren’t. And some time, 2 person needs are not compatible.
It doesn’t mean that one should ignore their needs for the comfort of other people. That would be a very ableist way of looking at things. It means it needs to be worked out together. And agree to take different roads if they’re not compatible.

i Think it’s all about spare capacity.

One person migut have some spare capacity to meet in the middle whilst someone else might not.
You feel you can meet in the middle re ‘bring an intimate passionate oerson’. Thars great. You have some isare capacity to do that. You can’t assume someone else or everyone has.
I can’t cook at all, havent cook a single meal for about 4 years now. I can’t meet dh in the middle and do some of it. Even if he is tired. Even if he has a headache, is ill etc… because if I do that I’ll end up in bed, in pain, struggling with lights, sound etc… for at east a few days, if not a week. If I was to do it regularly? My baseline would worsen, I’d be in more pain, would do even less than now. Whereas dh, even if he has caught a virus etc etc, still has some spare physical capacity.

That’s why I think that yes, some needs are non negotiable. Yes they trump other people needs. Because the consequence of not filling those is illness, whether it’s MH or physical (or both).

The danger, when you’re the more ‘functioning’ person with more spare capacity is to end up taking on too much. To put yourself last and not take care of your needs. But as @RosiePosie007 said, it’s an issue with boundaries. And I see me having poor boundaries a ‘me’ problem, not an issue with dh.

Having a disability is no excuse for being a dick head. I think the problem is many of us have given them too much lenience and they’ve ran with it. There is no fair reason to
loose your temper, shout and gaslight people and deny their reality. You might struggle and be in your bed but I bet you aren’t a
short tempered gaslighting dick head!

Many people would argue I’m a dickhead for not getting up and cook for once when dh is ill…..

I don’t think any decent people whose opinions you should take any notice of would. Im not saying you shouldn’t take anyone’s disability and illness into a major account. But shouting and swearing and stonewalling and dismissing are not a disability, it’s a disgusting behaviour.

In the scheme of things I am lucky that DH doesn't have the lack of empathy some people have had to deal with. He may be autistic to some extent, but if so not in that very self-contained way that can get in the way of understanding other's needs. It's mainly that the ADHD makes him a bit explosive and very bad at Getting Shit Done.

He's just moved up a dose of his meds... he was a bit worried on Monday evening after he started, when he said he felt suddenly quite down, but he knows that might have been any number of things, including not getting the jobs last week,

He is getting down to it doing some stuff on his software product and writing some articles about it online but I think I need to have a word with him that he is maybe doing this too much in isolation - he needs to be hooking up with tech news and people and events, he can't get this done on his own. He is still applying for jobs as well.