Married to someone with Asperger's/ASD/ND: support thread 15

[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/5245372-married-to-someone-with-aspergersasdnd-support-thread-14?page=39&reply=143014416

God yeah, I'm sorry you're having to live with it My mum completely collapsed with it when I was 16 - was bedridden for 6 months, could hardly leave the house for another 6 (thank God a family friend moved in and basically looked after her that whole time) and has had to pace herself very carefully ever since. She's done a lot but it's still stolen a lot of the life she could have had.

DC's friend with CFS has offered to lend a book on pacing which could be helpful. In the meantime we think worth testing for blood pressure issues (they were telling me tonight they also have bad circulation and light-headedness when standing), thyroid or sleep apnoea which I think you'd need to rule out first.

Apologies, I feel like I’m just crashing into the middle of a really long thread but I’m just really tired after another really difficult evening and don’t have the capacity to read through but really hoping I might get some helpful advice here. DH doesn’t have an official autism diagnosis. I basically made him go to therapy about 7 years ago (because I couldn’t tolerate the way he was behaving towards me anymore and hoped it might help - at the time we thought it was anger/anxiety issues) and his therapist (who didn’t last long) said she thought he was likely autistic and told him to go for a diagnosis. He had an informal diagnosis with a psychologist who said he was borderline. Since then we’ve had kids and his ability to cope with many normal aspects of life has significantly deteriorated and it just feels so clear he is autistic. Our relationship is really rough right now and I think we need marriage therapy. The question I wanted to ask, of anyone on this thread who has had therapy, is do we need to find a marriage counsellor who has experience of working with people with autism? On the one hand it feels like it drives so many of our issues so it’s important, but I’m also worried that his behaviour will be excused away as ‘not his fault’ or ‘not something he can change’. But whether it’s his ‘fault’ or not I just don’t think I can carry on tolerating it and worry about the impact on our children of witnessing it. Sorry for the essay! Just really want to investigate therapy but don’t know where to start.

Absolutely conditioned to put everyone else's needs before my own.
I have spent 27 years basically thinking and doing for dh.
I honestly don't know what putting my needs first would even look like.
The one thing I keep focusing on is that I've make that first terrifying step of saying the words 'Our marriage is effectively over'
I know I couldn't walk away if it turns out he does indeed have 'something' that would require some sort of long term care. I am being optimistic that this is not going to happen though.
At the moment I can only stay strong and keep moving forward.

The irony is he does have something that requires long term care and you’ve spent 27 years already on his care.

@Peppasparty Wow.....I didn't think of it that way, but you are absolutely right.

@Peppasparty @Ohdostopwafflinggeremy that’s also hit me.

We are carers. Setting up environments and situations to accommodate their needs and keep the peace.

I’ve had enough.

I hope that wasn’t offensive. I don’t mean that every ND person needs care.

@Drmsta I haven’t done therapy with DH, but we have both done individual therapy. However I would ask, has your DH ever shown the desire to try and change his behaviour, is he capable of self reflection and acknowledging that he has done something wrong or hurtful. DH is able to accept his flaws and has worked towards improving his responses to things. This doesn’t mean I’m perfect but I’m not fighting my own neurology all the time. If your DH has never admitted fault or accepted that a behaviour may need modifying I’m not sure counselling would help. Is he open to it at all?

@Peppasparty they might not all need care, but scaffolding is the term that is used for supporting ND kids and I can see I have spent a lot of time providing this for my DH too, in some aspects of our life. It’s that extra level of awareness of trying to avoid discomfort, my daft one, I don’t buy stripey tops because I know DH really doesn’t like them as they mess with his eyes. 🤦🏻‍♀️

I get it, I can do the same with my mum but who is going to do it for me and these partners because we all need “scaffolding”. We all develope needs along the way in life. I had a miscarriage and where was my mum’s scaffolding. She shrugged her shoulders and said was for the best. That lack of care caused damage to me just as they get damaged from life.

Gosh not at all @Peppasparty. As others say, it’s the constant scaffolding. It’s not a life of partnership or creativity.

That’s what often stops us from leaving. We take away the ‘care’, scaffolding and the abridged guide book for life that has supported them for 20+ years.

Isn’t scaffolding a temporary structure to be removed once what is wobbly is secured. It’s not scaffolding it’s like a permanent extension if they don’t do anything to help the situation.

I think that’s why it’s so exhausting. Every new scenario means new scaffolding. Holidays are the absolute worst.

Oh yes do check for POTS!!
Being lightheaded might be a BP issue but you might also see an increase in HR over 30bpm (>30bpm = POTS when you go from lying to standing).
Hard to get a diagnosis (much easier going private) but stabilising that helps a lot!

Really your mum has been able to get out of the severe stage.

@Peppasparty hmm maybe flood defences would be a better analogy, you go in all keen and get everything shored up and then over the years the defences (you) get eroded through the forces of life. Sorry if that’s seems crass, it’s trying to find a short hand I think for what so many seem to be going through. I’m sorry your mother never gave what you needed that’s hard when it feels like it should be a natural thing and it just never happens.

I have 2 kids now. But at the time it’s not what I needed to hear.

@Drmsta - DH and I are seeing a therapist that is primarily a thing about parenting out youngest who has a diagnosis of ADHD because DH finds it hard to cope with and insists on seeing so much as laziness and not trying. It's hard because he is similar to DS in many ways but I think DS' ADHD affects his ability to learn much more than any of DHs did for him - he was anyways a high flyer academically. This is all compounded by DH's parents' complete inability to understand him and respond to difficulties and differences compassionately.

Thanks @Pashazade . On whether he’s open to change, it depends. He will generally acknowledge that his behaviour is not ‘ideal’ (as he puts it) but whilst there are occasional moments maybe once or twice a year where he fully acknowledges how badly he can behave and seems to have real insight and regret most of the time he minimises. He would go along to therapy if I organised it but I suspect he might not react well to the therapist if they’re at all challenging as he’s extremely defensive and reacts very sensitively to any perceived criticism. I’m just not sure whether I can find any marriage counsellor or whether I need to try to find someone with specific experience of ND partners.

I can relate to this, my dad died several years ago. 2 days later there was a big family occassion within DH family. I (of course) bought and wrote the card, DD (13 at the time) organised a present. On the day of the family thing, I was going to sort out some stuff to do with my dad first and then meet the rest of the family there (1.5hrs away) I reminded DH about the card - he instantly told DD not to forget it - and the congestion charge. Went to the occassion. Next day, DH asked if I could drive home because he felt tired.....

It’s just the complete lack of empathy, like the barometer is set for too high and it’s not triggered. I can’t understand this at all because I feel a lot about a lot of things. I’m affected by lots as people are.

@Drmsta We've been to 3 different counsellors together. I've learnt things that have helped me but I'm not sure counselling made any significant difference to DH.

Then, each time the counsellor said something DH disagreed with, he stopped going.

I think my DH is self-aware (i.e. understands himself and his thinking) but unaware of his impact on other people. He's very defensive if anyone points this out.

Actually, maybe counselling has helped DH feel better in himself. I just don't think it helped with the specific marriage problems we were trying to solve.

Not therapy, but becoming aware he was probably neurodivergent has been a massive help in terms of DH recognising when things are 'his fault' and not other people's problem.

The absolute worst phase of our marriage was about 10 years back when he was insistent about going up the gym but if he couldn't find his stuff or left it too late he'd go into a rage about it and literally every weekend I'd be wondering what I'd be prepared to cancel to ensure he made it to the gym. I mean, it's also much easier now the kids don't need supervision, but he also generally shrugs and acknowledges it's his problem when he doesn't make it to exercising

Yeah on the therapy thing, I don’t think I’d do it with DH. I’m personally a bit unconvinced it would work. I think the big breakthrough between us was showing rejection sensitivity online to DH and gently saying ‘I think you have this and it’s why we can’t talk about stuff’.

That and me talking about everything to do with the issues in our marriage in an excessively calm unemotional way to avoid triggering this (which I resent hugely but it does work). I have accepted that DH cannot tolerate my anger and I’ve subconsciously felt that was ok because my Mum never allowed me to have negative feelings either.

Can you organise therapy for him specifically with a neurodivergent therapist? That has been really good.

Well done! You needed to say it. It’s the first step. I’m so glad the world didn’t cave in on itself. And yes, it’s so so sad. But staying married is sad too, for different reasons. Sending love and strength. Xx