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).

The poor poor children Sudocream what a sad tale.

I think marriage without children to anyone is probably easier without children. With ASD I think the extra stress children bring can lead to a cascade of extra overwhelm that the ASD partner finds hard to adjust to. New routines, new interruptions, new sensations, less time alone for oneself and one’s special interests.

DH became v stressed in the early years and the black and white rigid thinking had me in tears many times. Those dark days are passed thankfully.

I couldn’t say they shouldn’t have children. That’s a bit too much. However one must know the genetic element and understand that your children will have the same difficulties as the ASD partner potentially and the stress and exhaustion the NT partner will go through. We need support systems as much as the ND partners we are with. It is a huge weight we take on and there is zero awareness of this in public life. I didn’t know. I’m sure all of you didn’t know.

I think having children is a huge trigger in AS/NT relationship. The chaos, noise, unpredictability coming with having a baby makes it hard for them to keep the pretence/keep on masking.

The rigidity doesn’t help dealing with young children either.

The thing is, I’m reading quite a bit on Twitter, people with ASD who say that they shouldn’t need to mask etc… I wish they weren’t tbh. Because then you can make a decision based on who they ARE rather than who they are trying to project.
Once you have children, life has happened (eg I was made redundant during my second ML) etc… it’s making harder and harder to leave. ESPECIALLY when a lot of the behaviour is hurtful to us but often not meant to be hurtful iyswim.

Sorry @ChangeOver22 , I somehow missed your post and ended up saying pretty much the same thing!

@Daftasabroom the post you linked to is spot on.

I can see the traits in my FIL (when he died, in his eulogy, he was described as ‘living in the 1950 all his life’ which pretty much summed him up). And yes he was vastly indulged by my MIL and everyone just toe the line. His job as a framer was also perfect for him. Lots of time alone, doing things his own way (MIL certainly wasn’t allowed to have a different opinion on how to do things).
The quirky behaviours, like being able to tell you exactly how much it rained on the 26th February 1976 (and yes he kept a daily record all his life) were just ‘him’…. Etc…

DH has very similar traits incl being very rigid. I think one big issue for him is that he isn’t diagnosed as such (just vaguely agreed he is on the spectrum) and the techniques he developed as a child/teen are just…. crap/not helping him at all.
But he is too rigid to ‘see it’ and any change on how he sees things takes years, and I really mean years.

I can absolutely relate to the last few posts re: things changing post children. My stbx was absolutely fine pre-children re: stressful situations and could handle things without becoming a mess but the minute the children arrived, he gradually lost the plot and genuinely felt hard done by. I had severe postnatal depression and he used to tell me to leave the babies crying and get some rest. I couldn't because I knew he wouldn't step up. He would've let the babies cry themselves into a stupor. He then complained that he didn't like the babies and how he wished we hadn't had them to completely withdrawing from family life. I then took the lead and would plan things for us all. What he took from all of this was that I was controlling- I was! If I didn't plan or organise things, nothing would happen. I remember being a mess for 18 months and one day waking up and realising the fridge and oven hadn't been cleaned for all that time. After 3 years of struggling with my mental health and returning to work, he completely lost it and told me he resented ever having met me and how he wanted to leave because he didn't love me anymore. The thing is, I don't think he's ever loved anyone- he's good at tolerating people and can charm others outside his immediate environment but he's a different man at home. Silent, moody, non-empathic, demand avoidant and deliberately provocative. He's had issues with his family, friends (he doesn't have any from school, college or university or work- knows people much younger than him who share a niche interest), his ex-wife and his former bosses and now me. I feel foolish for having fought hard for this man and trying to make things easy for him only for him to turn around and lump me in with his former 'aggressors'. I feel sorry for myself and my children for a future that I feel we've been robbed off.

What's even more shit is that my little one is showing signs of ASD and I feel I made a wrong choice re: choice of partner and so feel personally responsible.

@stbew ah if you only knew how I rue the day that I chose DH. And I probably did choose him. He was like a puppy. He knew he had struck gold Instinct told me it was not the best match. I fell for safety. Steadiness. Reliability. I had no idea these would turn into prisons of rigidity, inflexibility and endless routines. I know DH doesn’t see me as imprisoned now but I think he knows there is something lacking yet he also knows he can’t provide it. So in we sail like a mismatched pair trying to the make the best of it. It’s thoroughly exhausting though.

and yes the kids are affected and that’s what hurts the most. It’s been such a painful journey raising two kids on the spectrum. I’ve had a decade and a half of disappointments and rejections, of sadnesses and thousands of hours of supportive conversations with both, trying to put them back together. Even today DS at home having mental health break because he’s being bullied so badly at school. And it never ever ends it seems. I can’t tell you how it’s shattered me as a person.

I feel robbed of a chance for normal motherhood with NT kids because it just looks SO EASY compared to this. And I’ve done it alone. Zero input from DH who doesn’t want to know.

@stbew things changing post children

DW gave up the obsession with her job within three months of getting married. She gave up with me to be obsessed with DS1 and more so with DS2. It's right that if she's obsessed with anything it's the boy's but it's been at the sacrifice of our relationship.

nd yes the kids are affected and that’s what hurts the most. It’s been such a painful journey raising two kids on the spectrum. I’ve had a decade and a half of disappointments and rejections, of sadnesses and thousands of hours of supportive conversations with both, trying to put them back together. Even today DS at home having mental health break because he’s being bullied so badly at school. And it never ever ends it seems. I can’t tell you how it’s shattered me as a person.
I feel robbed of a chance for normal motherhood with NT kids because it just looks SO EASY compared to this. And I’ve done it alone. Zero input from DH who doesn’t want to know.

Changeover I feel so sad reading this. I am sorry your ds (and you) are having such a tough time. I have a dc awaiting assessment and it has been so, so difficult over the years with the burden of making things okay and the worry falling to me. Now I've finally got to the point where I'm having to push for an assessment - SENDCO agrees one is needed after DH having so little involvement in recognising there is an issue and I have talked myself into thinking things will just improve without intervention up until now. It feels like such a relief to have another pair of eyes on this and yes, emotional support. It is so emotionally draining and at times isolating enough, let alone without dh being on board. I have my own issues from traumatic childhood to manage and this extra layer on top has shattered me too. I think we need to show ourselves a lot of compassion through all of this.

I fell for safety. Steadiness. Reliability. I had no idea these would turn into prisons of rigidity, inflexibility and endless routines
Thats me too!

And me. That’s exactly it.

I willingly bought in to the stability, rigidity, safety and steadiness offered to me by my ex- partner with highly probable HFA. But I felt lied to and hoodwinked after the event. More fool me for not looking at the situation with a more critical eye.

I think the notion of 'masking' can be a bit misleading here. The idea is that ASD people have to mask whereas NT people don't.

I think it's truer to say we all mask to a degree, depending on the situation we are in but ASD people have to work harder up do this. If you are about to melt down in charge of a crying baby, masking (ie, self-control) is clearly a very good idea.

Hallelujah for this thread. So much rings true.

My wife, I’m 99% sure, has ASD and the unfortunate fact she hasn’t told me about it has made for a very unhappy and difficult marriage. Finally this year I’ve worked out the root cause of our problems. Unfort7nately I can’t say 100% as she totally refuses to try and get a diagnosis, despite my pleas.

it helps to read some stories on here, a lot of which are very similar o my situation.

@Apex3 did you start a thread yesterday explaining what was going in but it got zapped?

Very few people get how difficult things can be in an ASD/NT marriage. Most people find it easy to recognise things are hard for the ASD partner but it’s rarely ok to say things are hard for the NT.

Fwiw I would t hang all your hopes on her getting a diagnosis. A diagnosis just highlights what could be potential avenues to help communicate. But it won’t solve the issues.

Hello Asterix, yes that was me.

I think people yesterday thought I was blaming her for having ASD, which of course is nonsense. However I can’t help feeling some bitterness that I’m fairly sure she’s known for years and years about it but never told me. Surely this is what married people are supposed to do, share personal info. You might think ‘why didn’t you work it out earlier’, well I didn’t, I knew nothing about ASD, I just thought we didn’t have a very good relationship. It’s taken me 20 years to get to this point.

Too right how hard it is for the NT person in a relationship, I haven’t even hugged anyone in years, I try and talk to school mums just to get some female conversation, my wife struggles to make eye contact these days and mostly wears hoodies so I can’t even see her face. As somebody else in this excellent thread said, it seems to have got worse with age, or maybe she’s not able/doesn’t want to disguise anymore

Ps a diagnosis would help me, finally I’d get some answers, and I’d be ok with that. In fact it would be a relief.

Yes!!

I can only say what has been my experience.
I didn’t realise DH was in the spectrum until I started to have some questions about dc2. It’s only then that I realised that DH was very much on that spectrum (and so was FIL).

I think it’s pretty normal to not know if you’ve never met ASC people. It so happens I now have quite a few around me, most are diagnosed. Some are children (or the cups of adulthood), others are adults. And when you know what to look for, it’s becoming more obvious iyswim.

However, DH never wanted to seek a real diagnosis. He agreed that he is in the spectrum but that’s about it. There is a huge mix there of fear, feeling HE is right (and I’m wrong) so why does he need to change, needing to make decisions, which he seems to find particularly hard (until he has decided and then there is no changing his opinion/decision) and probably a lot of internalised ableism.

I also know he is getting upset when he realises he has hurt me. A lot (if not all) of the hurt is not malicious. But coming from a complete lack of communication. Some directly linked with ASD, others from the coping mechanisms he has developed. (Plus the No hugging etc etc) Still they hurt.

Wether you dwife knows and has known for ever…. Hard to say isn’t it?
I can only tell you that, having a chronic illness for more than 15 years, I find it extremely hard to evaluate for myself how seriously ill/affected I am. When it’s your normal, it doesn’t look like a problem iyswim. You’ve adapted around it, found ways to cope. It’s there everyday. Being able to SEE how much it affects you and/or affects others can be difficult.

A lot of what you’ve said resonates with me.

My FIL is also blatantly on the spectrum, looking back I don’t know how it’s taken me so long to work it out but, as you say, it’s your normal - you adjust to it, especially when long periods of time are involved

We also recently had a conversation about getting a diagnosis, and I got the response ‘why don’t YOU go to the doctor and get a diagnosis’. I did remain calm and tried to explain that a diagnosis would help me and us together if she didn’t think it would help her, but she just said ‘you’ve found out everything you need to know on the internet already’. Sometimes I feel like banging my head against a brick wall it’s so soul destroying. I’m left in a position where I can’t see a way forward for us without a diagnosis

But, whatever, the feelings of utter isolation and being able to talk to no-one don’t get any easier.

I hate to agree with other posters but a diagnosis won’t fix the communication issues. They will remain.

a diagnosis is just a bit of paper after all. It sounds like she definitely has ASC but as I’m sure many will attest on here the help after diagnosis is lamentable. There is none. You’re on your own again.

The only thing it can do is help your DW maybe come to terms with some of the horror she has undoubtedly experienced through life. She may well have PTSD. So yes you are living with a disabled person. As am I.

And yes to discovering this all late, only once you have kids. Once you know what to look for it becomes so much more obvious.

Traces of ASC up and down the road where I live. It’s an affluent area and the high IQs are definitely mixed with ASC here.

I feel for everyone today. Last night for us was awful. Everyone had a meltdown including me. Sometimes I feel like I can’t go on. Last night I thought about if my car crashed I’d just be relieved from all this burden. I wouldn’t have to kill myself but the choice would be made for me. I can’t remember feeling so low for a long time. I just can’t see a way out. My kids both impaired need me. I have no way to earn an income, I gave up work to look after them. My whole life is looking after them and running the house. DH has never been to school ever. I do everything. Absolutely everything and I’m so so tired.

I don’t think ASC people when they come on here and criticise us realise just how deeply deeply sad the NT partner is. Right now I feel bleak. I’m having a bad phase at the moment. Hopefully in a few days things will be brighter. But it’s been like this always. Always hoping things will improve.

DS is being bullied again and I have no fight left. My heart is broken in a million places. I just want kindness from the human race but it doesn’t seem to exist. I even changed him to a private school but for £15k a year I still can’t get it to stop.

its like I’m cursed to live in perpetual sadness.

You sound so down ChangeOver22 :( life can be so hard sometimes.

I had some quite bad depression a couple of years ago, I went to see the doctor, and i was in pieces in front of the guy. I’m a 46 year old male btw, I’d just reached breaking point. Thankfully 2 years of anti-depressants and I seem to be a lot better, they seem to have had a lasting effect somehow, I feel like a different person now to then. It doesn’t mean to say life isn’t hard sometimes but I try and look at the positives (my kids) and remain strong

Re the diagnosis, yes it’s a weird one, and I’ve read plenty online about how they’re very hard to get and support is quite limited etc but I feel that, for a chunk of my life, I’ve been trying to work what’s been wrong with our relationship, whether this was normal, or whether it wasn’t normal. Finally I think I’ve got there and a diagnosis would confirm that. It would be a help to me, but it’s clearly not going to happen so I’ll just have to move forward with my own beliefs.

The hardest thing I find is just the lack of talking to anyone, well yes I talk to the kids obv but it’s not the same as a conversation between two adults. Sex I miss, for sure, but that’s the least of what I miss. The evenings are just so quiet, she’s in the front room I’m in the other room, it’s the little things, saying something to someone and seeing them smile back at you, a little touch on the shoulder or putting your arm round someone. Those are the things that I miss so much in life.

sorry to hear about your DS :( that’s horrible

"The hardest thing I find is just the lack of talking to anyone, well yes I talk to the kids obv but it’s not the same as a conversation between two adults. Sex I miss, for sure, but that’s the least of what I miss. The evenings are just so quiet, she’s in the front room I’m in the other room, it’s the little things, saying something to someone and seeing them smile back at you, a little touch on the shoulder or putting your arm round someone. Those are the things that I miss so much in life."

That's our set up too. In different rooms - or DH just not here, always working, never ever around and when he is at home he's busy going to the gym, running, doing more office work, doing life admin, never has time to look after the kids or do anything around the house to help.

But yes, it's the loneliness, the quietness. My kids are older now so i can talk to them a bit, my DD 14 is very switched and on bright and we have some fantastic chats but it's not the same as talking to a man or woman of my age - or as you say, to have that affection.

I miss so much the idea of someone coming up behind me while I'm doing the washing up and giving me a cuddle from behind. Just those small intimate moments which were never, ever there.

Sex is sex. We don't do it anymore. Affection is the perfunctory hug that comes when saying hello after coming home from work. He used to hold my hand years ago when we first got together but that disappeared once the children came. Now I don't think I could bear to hold hands - it represents a lost time and a lost person, or perhaps a person who never existed. It suggests we could turn back the clock but I feel dead inside. I cannot revisit that side of things. I am too angry, too resentful, even though i know it's not his fault. But it's been his disregard for everything I have given up, while he does exactly what he wants. Underneath I'm so very angry.

I'm sorry you're going through the same thing Apex3 so sorry for all of us, wishing for something we can't have and soldering on "doing the right thing", staying in the family unit but desperately lonely.

I've considered anti-depressants but I've heard they are difficult to come off. Has that been your experience?

To some extent also, I don't think I'm depressed, its' more I'm repressed. I can't live according to my needs. And I'm completely and utterly exhausted, physically and emotionally. Inside I'm still me though. But I can never let her out.

But it's been his disregard for everything I have given up, while he does exactly what he wants.

Thats an excellent description of what’s going in for me too.

Hi @ChangeOver22

thanks for sharing your thoughts. It is rubbish isn’t it, as I write this my wife is in the front room with the dog, I’m sat here on my own, as flipping usual haha.

Do you talk to your kids about the situation with your husband? I’ve had to talk to mine, I wanted them to know what was going on, because they see things and it would be stupid to think they don’t. I’ve tried to explain to them that this is not the way it should be and not to look at our relationship and think that’s normal. For their age they’re pretty well rounded kids, and they seem happy so that’s good. This doesn’t seem to have had too much impact. But I wish I could show them what a relationship should be like, chatting, laughter, some shared interests maybe, hearing nice words, seeing the odd display of affection.

Re the anti-depressants I wouldn’t have gone to the doctor (typical bloke!) unless I really needed to in order to avoid something bad happening. And they were great, they worked really well. But after a couple of years I just thought I wanted to come off them, like I didn’t want to be dependent on them any more. So I tried to reduce the dosage, taking a tablet once every other day. It was awful, really hard. Then one day we went away for a long weeeknd to a friends 50th, I realised I’d forgotten the tablets half was there, no way I was turning back for them. So I went three days without one, when I’d mentally decided to go cold turkey, and it was fine tbh, much easier than trying to reduce dose. Quite unusual though I think, there’s a lot of people that approach doesn’t work for. I’d say stay off them if you can unless you really feel you need something to help :)

Anyone tried therapy? I think I need to talk to someone to release the anger, to be heard.
I've shyed away from discussing DH with friends and family because it seems disloyal and he has provided an honest stable amazing home but completely on his terms.

How do I find this release, what would I google? Would it actually help or am I just better travelling and moaning at an out of town hairdresser?