Married to someone with Asperger's/ASC: support thread 6

[Daftasabroom]

New thread, and as previously:

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. (ASD partners welcome to lurk or pop in, but please don't argue with other posters and tell them they are wrong).

Yes, the struggle. Same here.

I wonder if you’re being a bit disingenuous, given what you are posting about this thread on the neurodiverse mumsnetters page?

I wonder if you’re being a bit disingenuous

Not at all. There are some posts I’m completely unimpressed with, but I’m allowed to think that and still contribute what I think are fair and legitimate contributions. Posters can’t just attack people because they have a different experience or perspective. There have been times where autism has brought some really sad times and hard challenges. I have a deep understanding of this. I have just as much right to contribute to this discussion as anyone else here. I took a long time to read the entire thread and carefully word my original post so as not to delegitimise anyone else’s story while sharing my own. I make it clear I agreed autism is at the root of some of the challenges shared here. If you’re going to suggest I’m not being genuine, which part of my post did you take issue with?

The generalised advice such as:

“just leave”

and

“miscommunication being our responsibility to handle”…

these sweeping statements.

but anyway over and out. I won’t debate this further with you because as far as I can see you have no solutions only further push back on me and others like me who have come here to lament, not be put in a position to defend our painful lived experiences

miscommunication being our responsibility to handle”…

I didn’t say that, did I. I said it was shared responsibility.

who have come here to lament, not be put in a position to defend our painful lived experiences

Nobody, least of all me, is asking you to defend your lived experience. I am sharing mine and had thought I had words of wisdom within my shared lived experience. Or is thread only for you? Just your kind of perspective?? I don’t think that’s how it works. I went to great pains to try and be respectful to both sides and you have done nothing but attack me. Feel free to ignore my posts if you find nothing useful in them. But I’ve as much right to post here as you do. My experience has been up and down, mostly up for 15 years so who knows, maybe someone else will find my contributions useful. I do think that leaving is an option in any bad relationship and I cannot for the life of me understand why anyone should be berated for suggesting it. It’s a common suggestion!

Hi All, for perspective there are almost as many posts on the 1/2 tin of soup thread as there are on this one.

But a gentle reminder: we are ALL different, NT, ND, ASC, ADHD etc. etc. our relationships are also very different, unique, and if people are complicated, relationships are people x people more complicated. My relationship with my wonderful AS son is complicated and he worries the crap out of me. My relationship with my lovely AS wife is complicated and it frustrates me and leaves me lonely beyond belief.

Please try to avoid generalising and projecting.

Hang in there.

others like me who have come here to lament, not be put in a position to defend our painful lived experiences

100% this. Well said. For this thread to work as a support thread this has to be respected by all posters.

I accept the are some differences here but I think the perspective of @WahineToa is needed in thread. She is a million miles away from some other contributions we have seen recently.

As someone who is in a well functioning marriage with someone with ASD I also take the view that I have to go the extra mile particularly regarding communication. There are of course limits, and everyone differs, but we trying to get better at what one does is part of making any marriage work.

Thank you kindly @TomPinch much appreciated.

Also, and I apologize for behaving like a junior mod (and I'll shut up after this), but I suggest that if what's said on other threads gets brought in here there will be a massive stoush. I'll just leave that here (and accept any criticism in response.)

My everyday life is challenging because I am having to provide extra support/emotional resilience to my DH which makes me feel like I'm codependent. I find it really difficult to understand what is ASD behaviour and what is him just being disrespectful/selfish. I then wonder whether it matters where it's coming from and just accept I don't like it and move on.
I don't want to be constantly asking him to do things as I would for one of my teenagers. It's exhausting for me. He lives with us but separate in terms of how he sees life, it's me and the kids and then this extra adult who does his own thing. I'm half term I took half the week off work and spent time with our teenagers. DH took the other half off (this usually doesn't happen) but then kept suggesting he was going off to do things on his own hobbies and when I questioned it he was saying the kids would be ok on their own....yes they're not babies but they are still at the stage of enjoying time with family but that role doesn't occur to him. I can work from home but I had to go into work to make a point of not being around.

We both completed an online empathy test recently and his was incredibly low whereas mine was high.
This is just one example of me feeling like I'm a single parent/carrying the mental and emotional load and as I said I'm not clear on whether the behaviour is AHD or just selfish/disrespectful ultimately I don't like it and I question what's the point of him being here. Yes he can be funny, he is very knowledgeable, quirky but I'm not feeling like a person that matters.

ASD not AHD..

@Anotherpairofshoes
I find it really difficult to understand what is ASD behaviour and what is him just being disrespectful/selfish.

Re your DH going off to do things on his own....

My (diagnosed) DH needs more time alone than I do to decompress from the overstimulation of work/commuting/kids' noise.

He works in a typically autistic field (IT) but feels the world generally is set up for NT people and finds it exhausting. So needs to be alone and/or sleep more than me.

I'd say I spend maybe 4 times as much time with our children than he does because they exhaust him more quickly.

We both worked full time when we met but after DC1 I found it impossible to juggle all the things he found overwhelming so I went part-time (despite being the higher earner at the time).

It seems to be less stressful this way for our family.

This is so true. DH needs to do a lot of exercise to decompress from a very stressful job. And wants to spend time alone doing his things.

it means though I’m left to take on ALL the domestic everything, including ALL the emotional and physical lifting for the children.

DH never compromised on his job. Never wanted to.

I understand the extra needs but it doesn’t hurt any less that there has never been a compromise.

Nor have I ever been prioritised.

For instance DH will also do the same, let the children go off alone while he gets on with something around the house. Then gets cross when they don’t join in.

He can never flex to take into account what they’d like to do. It’s always led by him, then criticism for not following his lead.

He can never ever be led. Needs full control and to be in charge.

Whereas I’ll ask the children what they’d like to go or make suggestions and we go and spend family time doing those nice things. DH never joins in. Sees it all as pointless.

we went to a high ropes course in the summer. DH who is extremely fit wouldn’t join in. Couldn’t see the point. Stayed on the ground and criticised DS’s every move.

I find it really difficult to understand what is ASD behaviour and what is him just being disrespectful/selfish

That’s understandable, there’s a lot to learn about autism and it will be different slightly in each individual. In the early days of my relationship with now diagnosed DH, I didn’t know about autism so I really didn’t understand why he needed so much alone time, or even just quiet time. I was very social then and am quite a loud person, I sing around the house and talk constantly to the animals and things like that can be annoying for him. I took it way too personally in the early years and after having kids one was diagnosed, then he was and so much made sense after that. I’ve spent a lot of time learning about autism in general and then discussing with DH how it is for him. The diagnosis helped this a lot. I also started to look at his interests and what we might be able to share, for him quieter activities for the most part like gardening, art related things. He has very sensitive hearing. I know when we are gardening together, that he won’t enjoy it as much if I talk all the time. He knows despite us not conversing, that I don’t appreciate him putting headphones on in the garden when I’m there. So there’s a little compromising for both of us. He has also tried things I like, he even got way more into kayaking than I was! Things he may not have tried but did because I enjoyed it and we can do together, have turned out to be things he got really into as well. So it depends on the person and how they like things, for my DH it meant either quiet activities or being mindful he doesn’t like as much chat while doing things.

I don't want to be constantly asking him to do things as I would for one of my teenagers.

This stuck out to me because I totally understand that and get annoyed by it too. Even after 30 years, that frustrates the hell out of me. My DH has very poor executive function, I believe that’s particularly common. So as frustrating as it is to feel like a bit of a mum to him sometimes, for our life and partnership I have had to accept this is a skill I excel at and he just doesn’t possess much at all. For us to have a harmonious working household, it works best if I do give him lists, discuss the days plan or we have a big huge board in the kitchen floor to ceiling where everything is written down. Todays routine, weekly menu, shopping list, kids general week plan if it somehow involves us ( only 1 at home now ) our long term goals or projects are on it too and a budget. I do most of the writing down but my ND daughter here learnt all this as she was diagnosed young and loves lists and schedules and writing them for her Dad- she just goes a bit far sometimes and schedules every 15 minutes and he has to tick it off as he goes 😂 so we had to work out a compromise there! He absolutely loves this and feels much more relaxed if it’s all spelt out for him. He knows what needs doing of course, he just forgets a lot or focuses on the wrong thing etc For me, it means I don’t get cross if he forgets or get overwhelmed myself with having to monitor or make sure x,y,z is being done. What we have worked at is making it equal in our relationship by each doing what we are good at. My DH does a lot of the manual work, he makes most meals, he will do anything for us, and he takes care of areas like, the car, our current tenancy he manages things with LL… he is at the top of his field and has a good way of speaking to people in a kind of professional way, like landlords and schools.

I hope that offers a little help or suggestions. I would also encourage being crystal clear in what it is you need, if it’s within his capabilities, and particularly with the children, tell him clearly, more time is needed from you with them.

My DH has very poor executive function, I believe that’s particularly common..... for our life and partnership I have had to accept this is a skill I excel at and he just doesn’t possess much at all.

Similar except that my DH does do things which recur regularly.

So I do almost all the ad hoc life admin and planning and he does things which have a weekly or monthly pattern such as putting out the bins or (thorough and precise) accounts.

Similar except that my DH does do things which recur regularly.

Exactly same here too, lots of things happen without me mentioning as they’re his routine now.

I’d say I agree with you @WahineToa that SOME of the issues posters, me included, describe are very similar to what you have in poor NT/NT relationship.
I also agree that, for me at least, my way of communicating and my reactions haven’t always been the most adequate. I’m very aware that I have been lashing out from being hurt one more time for example.
I also think that most of us seem to have poor boundaries and chronic people pleasers who tend to consider other first before themselves.
My DH also has his own issues behaviour wise. Stonewalling being one of them. Saying yes when meaning NO leaving me having to guess whether it was a real yes or not because if it wasn’t, then grumpiness and anger would follow. Etc etc

Where I disagree is that he issues described here are mainly communication issues and that if, as the NT partner, we can understand better how our ASD partner works, then it will all be good.
Autism is a spectrum and not everyone is affected in the same way. Not everyone has the same life experience, the same parents and yes the same temperament too.
So eg your dd is happy to just do things her own way, in a very different way than her friend. Is it because of the way you’re parented her? Her own experiences as a child vs her friend (eg being bullied or excluded from friendship groups?) Is it because, on the spectrum of autism, they are not affected in the same way?
Or as you are hinting, it’s just a temperament issue?
tbh I don’t think you can tell why they have such difference in the way they react and look at things. But assuming it’s only a temperament issue is wrong Imo.

In the same way, your DH seems great at taking other people wishes into account. The example of the list is a great one. He is happy to follow the lead of his dd and follow the list. My dh would NEVER agree to that. He is missing the flexibility to do so simply because he will have had an idea of what he wants to do that day and there is no way he will change that to fit other people, let alone a list created by someone else. I mean that’s the man who told me I was controlling because I was creating a menu for the week - never mind I was the one shopping and cooking….

Id aslo say that you seem to have adjusted happily to a ‘new way’ of living. One where you arent loud. You’re not talking too much etc…. You are respecting your DH need for calm and silence at the end of the day. And if this is working for you, this is amazing.
For me though, this is negating who I am. Yes I am silent in the evening. I’m sure it’s great for him. For me though…. It makes me feel lonely and alone. It makes me feel like I have to suppress one side of me that is important to me. And that’s hurtful. It’s a concession I’ve made. But not one I made happily or that is actually working for me….
And I suspect this is also one reason why things are hard. Because the whole system has told me that I was the one who had to adjust because I could as the NT whereas DH couldn’t (or was Doug it so much outside the ouse it wasn’t fair of me to ask him to make an effort yet again). So I did. But at my personal cost iyswim.

Btw @WahineToa , do you have any link with the South Pacific by any chance? Your username made think about that.

Where I disagree is that he issues described here are mainly communication issues and that if, as the NT partner, we can understand better how our ASD partner works, then it will all be good.

I disagree with that too, it’s not something I’ve said or I think anyone said? A lot of what is written on this thread isn’t autism though, I think it’s fine to point that out. Lots of NT relationships are just as difficult. Even if some of the posters did understand ASD better, they’d still have relationship issues because some are not about the autism.

But assuming it’s only a temperament issue is wrong Imo.

I don’t think my DD or I did that. They are different people but they can both help each other navigate an NT world.

@WakingUpDistress yes obviously as said in my original post and I hope every one since, I emphasis it’s what works for us, my DH and his specific needs. I’m only explaining our experience. It may help some, but it won’t be of use to others. I’m not always quiet! Definitely not. It’s about compromise still, in that I know quiet is needed sometimes, and in some circumstances. I still sing around the house and talk to animals a lot. My DH also compromises. It’s hard to know what goes on in anyone else’s relationships, but I would guess that most autistic people are having to mask, change and adapt most days. Even in their own house. So I know my DH is doing his best, we discuss it but I also see it. Have I had to change or adapt more? For sure. There’s a cost to both of us in a sense. I think he’s worth it and that on balance, what I gain is more than what I’ve lost. That’s why it works I suppose, or part of the reason. If you don’t have that and you think the personal cost to you is too great, then of course that’s something I think anyone would understand. I have felt lonely at points over the years also, much less so now children are grown and life isn’t so chaotic.
Because the whole system has told me that I was the one who had to adjust because I could as the NT whereas DH couldn’t
If you mean society? By system? Yes that is I guess true. Although I don’t think people should be told they ‘have to’ do anything. I think NT/ND relationships being talked about and people being aware of what it means might help people make decisions early on. Some of us come from the era before diagnosis for Asperger’s particularly so may have got partners diagnosis late in life after you’ve had kids and you have less choice perhaps. Sometimes people just aren’t the right fit for this type of relationship :) it’s sad and hard though and my hope is with greater awareness and better diagnostic procedures happening sooner, we might see less of what you and others describe.

Oh and yes, I’m Maori.

I spent all my childhood there before moving to Europe for Uni (and never making my way back….)

I think we are talking at cross purposes there.

Can I ask you for an example on this thread of the issue having nothing to do with autism and just being a communication issue/bad relationship?

And how do you explain that none if the posters ‘recognise themselves’ in the Relationship threads but do in this particular thread? Aka they find find people that just ‘get it’, it makes sense and they recognise other posters difficulties as being similar to the ones they have themselves?

@WakingUpDistress I mean it’s 22 pages that I read over 2 days and I wouldn’t like to single out posters as when I did so yesterday I was personally attacked despite taking care in how I used my words. Things like they get a dopamine high out of controlling us or seeing us in pain/unhappy, that’s not autism. That’s psychopathy. The controlling aspect is about controlling surroundings, not people & not for some kind of ‘hit’ or joy in seeing others in pain. While yes there are many similarities experienced between partners here of things that are more specific to a NT/ND relationship, like I’ve said already, there are also some experiences shared that could be shared with those in NT/NT relationships. Lots of things like not doing their share of childcare, housework etc very very typical stuff. If an example comes up now I’m contributing to the thread l might be able to point it out. Quite a few other contributors here have said throughout the thread the same thing actually as myself, some things are specific to ND relationships and some are not and some posters were here to figure that part out.

I don’t see we were talking at cross purposes?

I kind of get the feeling I’m being grilled a bit because I’m offering a slightly different perspective to the dominant one on the thread? Although what you want examples of is definitely something that’s been discussed by many posters here.

I think the dopamine hit thing was from the piece someone posted from that blog. I don't think anyone on here said it (but they did link to it). To be fair, there is research about controlling behaviour and autism on google scholar. Obviously there are a great many autistic people who aren't controlling but suggesting people are being prejudiced for suggesting there's a link isn't really fair either.