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).

How about you stop spamming the thread with your "it's this way for me, so it's this way for everyone"? @WahineToa

I haven’t done that at all. I’ll be reporting any and all personal attacks. I’ll keep saying it, I’m sharing my story. I am being repeatedly targeted for it. It’s bizarre how insanely mean you are all being. I’ve said nothing like what you are suggesting!

In a marriage to what extend do you think a partner should become ‘less themselves’ and make their personality smaller to accommodate their spouse?

To the extent that they’re comfortable with. I don’t feel less myself because I’m quieter at certain times. My DH is more open and talkative at times than he used to be. Neither of us thinks this makes us less than we used to be in any way. Most people change once they become a couple, if it’s a positive relationship I believe you bring out the best in each other and learn from each other. When you share a house with anyone, you have to adapt yourself. Even when I was young and house sharing, I had to accommodate everyone else’s needs living together. If I had to be quiet all the time, that wouldn’t work for me.

In a marriage do you think there should be parity / a fair sharing of tasks so that one partner is not overloaded? (50/50)

Yes. This was part of the reason for separation. After children, I was overloaded. I also got a couple of chronic illnesses that took years to diagnose, but I didn’t know that until reconciliation. We also didn’t have diagnosis at this point, only our suspicions and DH wouldn’t discuss it very much, I felt out of stubbornness. It was a lonely time. I won’t reveal too much of our personal stuff but he had a difficult childhood and so did I. He has no family relationships after he left home fairly young and so I think, the pressure of that was there too. There was nobody else but me and I wasn’t even 30 at the time. I went through a stage of feeling suicidal because of the illness I couldn’t get diagnosed and I don’t know, this might have been why DH decided to address things. I came from a violent home and was homeless as a teen, so I already came from loneliness and this wasn’t something I could tolerate. After our child’s diagnosis things started to get better because he was very hands on with the kids and involved in that process. So he learnt about it. We then got his and started to work more as a team. It was a lot more honest. he took all those years to fully tell me about his hearing problems, how painful it can be. So now we have 50/50 or really he does more currently as I’m unwell and my anxiety can be extreme ( although all much improved presently ). I do more personal admin, or organising of it, he does more cooking and taking care of the animals, and he has personal admin tasks that are just his. I had to give up my job a few years ago to recover from illness properly, so he also is the only one working FT, although that’s temporary. So it isn’t 50/50 with every task, but overall it is quite equal- normally, I do less as I said now.

How do you avoid overload and burnout?
Any advice for mumsnetters who are doing all their partner’s life admin - and a larger proportion of the childcare, and arranging/nurturing social life and social connections etc?

That used to be hard and I addressed it a little above. I’m not sure of advice because I broke up when I was overloaded! But we only got back together if it was more equal. I just don’t think one person coping with everything like that is sustainable, well it wasn’t for me. I think diagnosis helped him understand how much I was doing, because for a long time I don’t think he understood that.

What 3 practical tips would you advise someone entering an ASD-context marriage?

I didn’t know when I entered and a lot of people my age won’t know either necessarily. So I’m hoping that becomes less and less common, because, I think that is what’s hard. If you didn’t know and you enter a relationship like this, it’s overwhelming and in our era, extremely confusing and lonely. I did so much finding stuff out by myself. I had one friend in the same situation. But if you do know and you enter into it:

• make time for your needs and vocalise what they are, maintain your own friendships
• get professional help if it’s needed, depending on the partner and level of help and assistance in life, therapy helps me and I go monthly still now
• be honest, about everything.

I don’t think I answered everything @creideamhdóchasgrá but please point me to any important bits I missed. It’s early so I may answer better later if I have time.

@Goawayangryman people that aren’t interested in what I’m saying should ignore my posts. Other people have expressed they are interested and are asking direct questions. This is a support thread for anyone married to someone with Asperger’s/ASD. It doesn’t say you can only be here if you’re miserable. It doesn’t say, no help or sharing what works for you. I shared my initial story because on one of the first pages, someone asked for a positive ND/NT story. I shared mine. I then answered a couple of questions. I then got met with revolting unkind abuse. Despite saying in my first post I have anxiety. This thread is full of amazing people. But those being nasty and unkind and telling someone to leave because they’re too happy, have problems that are not caused by me.

If you don’t like my posts, ignore me. Please, ignore me. I have not once minimised anyone else’s story. I’ve barely responded to anyone’s actual personal story. Yet I have had my marriage repeatedly attacked. I wouldn’t be posting so much if I didn’t have several notifications where I’m being tagged just to tell me I’m angry, nasty, minimising. I have gone out of my way to tell it from my perspective and I got so much abuse I cried last night. Not because of my autistic husband, but because of the disgusting things said to me here. My sharing a good outcome does not minimise anyone else’s struggle. My story is not about you. Ignore it if it doesn’t resonate. Only a narcissist would think everything said here was about them.

Way into a party*

@WahineToa Thanks for such a candid response, and so early in the morning.

You have shared your journey into an undiagnosed autism-context marriage, leaving when completely overloaded / at crisis point, and setting boundaries (including honesty from your partner and a diagnosis as part of the new picture) - and a new road of honesty in your autism-context marriage.

I was sad and sorry to read that in the discordant seasons of your relationship you have been lonely and exhausted - and in the face of additional burdens, suicidal. This will resonate with some mumsnetters posting here.

It is brave to share those difficult parts of your life and relationship - and as others have done here.

For people deep in the mire, such acknowledgement is a lifeline.

It seems that the common ground on this thread is that there are issues related to autism-context marriage - and some of the negative impact can be deep loneliness, pain, sadness, exhaustion and desperation.

It seems while this may mirror and reflect the experience of the spouse too at times (diagnosed or not) - but there is a need for this space for partners to share, and to have their experience acknowledged.

Thanks again for posting and answering the questions :)

I think my outlook is much more bleak tbh.

i think ASD/NT marriage can work with a subset of autistic partners. Those whose social awareness+nootropic mindset+Information processing issue affect them in such a way that they still do enough give and take, listening etc… that they can make concessions for their partners. That’s the ‘ideal’ situation that Wahine described. There is enough communication going round for each person to explain what their needs are and to be flexible enough to find a middle ground. It will still need work, more work than in an NT/NT. But you certainly can make it work.

Those who are much more ‘set in their way’, can’t take into account other people needs (usually because they can’t make sense of them so are dismissed) will end up in unhappy marriages for the simple reason that even when their partner explains their needs very clearly, they can’t hear it. That’s what happened for example when I told DH i was exhausted, too tired to walk much etc… and he would not get it, DESPITE having a diagnosis of ME that told him that much iyswim. DH was the same when his dad was dying of cancer so not related to me either.

I have no idea if the proportion of these two groups in RL. There are also probably many other subsets simply because of the fact autism is a spectrum.

Then you also need the right NT partner.
I think, on this thread, most of us seem to be struggling with some sort of trauma which will make it harder for us to sometimes get the flexibility required in an ASD/NT marriage. Or the emotional maturity etc…
I personally have two triggers - need to feel emotionally connected and to be respected/heard. DH struggles with social awareness and pragmatic language meant it was/is clashing massively with my own issues. It’s hard to keep level headed when you are constantly being triggered.
I think that trauma extends to our ASD partners too, simply because they will have gone through very negative experiences through life. My own DH has been bullied, struggled with any friendship and ending up lonely (he is the one who would love to have friends but can’t hack friendships) and of course the whole ‘not being diagnosed, no one knowing then what autism was and therefore was made to feel very bad about himself’. Plus the whole autistic anxiety and burnt out. That’s another layer to the mix that explains their own inflexibility, emotional immaturity and struggle to connect in adult way

The bottom line is that I don’t think all ASD/NT relationships are sustainable due to the fact you need to right ‘mix’ for it to work.

Two add ons comments:
1- I hope I have been clear that I’m not saying all autistic people are emotionally immature etc… But that for NT or ASD, trauma has a huge part to play there just like it has in a lot of NT/NT marriages. Few of us have secure relationship and/or done enough work to get to that ‘adult’ place.

2- Nice examples on how autism spectrum is working and how autistic people can have very different challenges here (it’s an autistic take so no ableism in this link)
neuroclastic.com/its-a-spectrum-doesnt-mean-what-you-think/

Thank you @creideamhdóchasgrá for your kind words here and messages, you’ve got a lovely way of writing.

@WakingUpDistress yes I agree with your conclusion at the end and I’m sorry to hear of your struggles, especially with ME to cope with too. You deserve support too. I get very exhausted with my set of illnesses and I can’t imagine not having that acknowledged… within a relationship anyway. I know what it’s like with friends and my mother and that is hurtful and hard enough. I hope you’re ok.

Love the posts on this last page, really helpful and constructive.

I agree that NT/ND relationships can vary hugely depending on which parts of the spectrum are affected. The link @WakingUpDistress posted helps understand that and there's also a cartoon I'll see if I can find which explains it well.

the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

Its a good cartoon @LoveFoolMe .

It made me think how crap the label ‘autistic’ is. It can cover so many different things, type if person and challenges that actually autism doesn’t tell you that much about what can be helpful or a trigger for that specific person.
eg being autistic can mean struggling with conversations or not. Or maybe only comfortable with some subjects (aka their special interest). You won’t know until you know the person (even more so if they are masking)

@WahineToa thank you.
Yes not having my own illness recognised has been hard. It took YEARS for DH to recognise it.
Strangely I’ve been diagnosed with SVT recently and that’s something DH ‘got’. So he is being very helpful and supportive if that when it has very little impact on me on a day to day basis . But he can SEE the impact (heart rate going crazy on pulsometer) whereas he can’t see tiredness…

@WakingUpDistress that sounds really hard. I found tiredness or fatigue my hardest struggle over the last decade of ill health, it’s really horrible. I got so depressed from it. I’m sorry you are dealing with that without proper support from a partner. It’s hard for others to see the impact of fatigue. But you would hope that you wouldn’t need to explain it or beg for help from a partner that should be able to see it right in front of them. Who should also actually care about your struggle.

I have a chronic illness also. Very difficult to cope with. But DH doesn’t want to know. He didn’t abandon me when it truly got going in that we’re still together but when it flared abroad before we had children and I was in trouble, in a lot of pain, he said “I don’t care what happens here to you, whether you see a doctor or not, the only thing that must happen today is that I get the plane back to England because I’m not missing any work because of you, because of this”.

I had an operation because of it a few years later. DH didn’t take any time off. My mum looked after me. It gets worse due to stress and exhaustion but he won’t modify his life to help in any way.

I’ve never had the requisite care or attention when I’m ill. DH assumes exercise is the answer to everything because that’s what works for him.

All of it makes me feel so alone. Like I don’t matter.

We’ve broken up. DH promises to change. He changes briefly but then it all returns to how it was. And now I have no energy left to split again. Especially when it doesn’t work.

Hello @bleunoir

I hear you. I recognise you, and your pain
I'm very sad about with you.

I read your post and the examples of what your Husband has said to you in the past (I recognise this is probably a drop in the ocean):

Of course, reading just those snippets alone, I can see why you feel so alone and you feel like you don't matter.

These are deeply traumatic utterances to hear from a spouse.

If part of cumulative pattern it breaks people. Literally.

Bright rays of transient hope and temporary behaviour changes are not enough to sustain any partnership that involves one partner saying and deeply hurtful things to the other (and not taking basic caregiving action).

A question would be in an autism-context marriage like this, does it take more energy to stay for good or leave for good?

(I do acknowledge that in the position of having left and come back, people are just dog-tired).

@creideamhdóchasgrá

Thank you for your kind words. For understanding how hard it is and yes the feeling of being broken by it all. I really appreciate everything you wrote.

For me if I were to leave I’m not sure how much it would change. Id still do all the heavy lifting in terms of running the house, looking after the children, baring the emotional load and all the support they need, going to parents evenings, writing emails to teachers to stop bullying and so on or help with executive functioning problems, aside from all the other pursuits like driving one DC to a d of e camp to taking the other one to an 11+ test. It never ever stops and the exhaustion is real. DH helps with precisely zero.

While I listen to countless hours of tales of sadness of the rejections my children experience DH is away abroad or in front of his screen working. I even tell him when it’s time to say goodnight to the children. He’s never go otherwise. Or he’d go late, at his own choice of time and wake them up. (which he has done and been told not to repeat). He never puts them to bed. He never has them in bed in the mornings, to chat and talk. We have separate rooms. So the children come to my room for morning chats.

today I woke up with a terrible headache. DH suggested I go for a long walk as “that always helps”.

I started crying because I am exhausted. So very very tired right now. He said he was sorry to see me so sad and then went out for a run, like he always does every Sunday morning, since I met him, 20 years ago. Nothing and no one can get in the way of his routine.

If I were to leave DH would just ignore the children when he’s with them, like he does when he’s here in the house. He’s away for a decent period each month. Wakes at 4am, home at 8:30pm during the week. The weekends are a rush of getting ready for next week. And more exercise.

He’s brilliant at his job. He’s extremely good. An incredible mind. I found his mind so attractive. But as a care-giver he is truly wanting. So I feel if I leave I’ll just be abandoning the children.

they’d end up being with him one night every other weekend I imagine. So there’d be no let up in my schedule. And I’d worry about them the night they spent alone with him. Not that he’s hurt them or anything but just it would be quite a blank experience. Maybe even quite negative. He’s very critical of everyone including them. Creates a lot of arguments.

And I have no career now. If I won the lottery I imagine we’d split. I stay because I have no choice. I’m trapped.

there have been suggestions of having a counsellor and finding time for hobbies and friends.

but when your DC both have councillors (child psychologists) at £165 each per session per child, plus private school fees to help with a less challenging environment for them you can see that to ask for yet more for me plus holidays etc it all gets to be a lot of money.

With my mother sick I have no time for friends or hobbies as I try to look after her. And I feel I can’t ask for more money for me for counselling. DH doesn’t see the point of it anyway. Thinks it’s a load of nonsense. So I’m completely stuck.

I hear you @BleuNoir. It reminds me of what was happening when my dcs were small….

Also reminded me if the work of Gabor Mate and how stress and trauma is reflected in the body.
When my dcs were little, I wondered if I would be better if we separated. If I would be better health wise, emotionally and practically. Like you, I could never decide if I was going to be ‘better off’. It’s hard.

How old are your children?

14 and 11. Both on the spectrum. One more noticeably than the other.

Both require a lot of extra nurturing and help and support due to friendship issues, executive function issues. Both in mainstream but my God it’s been a struggle all the way.

14 year old had a terrible summer. But now back at school and doing best she ever has. But then huge meltdown this weekend about feeling rejected. Needs constant support with executive functioning.

11 year old on his second school and being bullied again. Badly. School not taking it seriously. Been in three times, spoken to head, to form teacher twice to pastoral head, drama teacher it goes on and on. I’m so tired of it all. Emails, phone calls. Ended up on beta blockers as the electrical activity in my heart went mad, palpitations from all the stress.

exactly the same happened to 14 year old in year 6. And year 5.

DH oblivious. Has the hide of a rhinoceros and believes bullying teaches people to be strong. But he never got bullied at school. He was the bully. His own words.

@BleuNoir I'm sorry. That's incredibly hard. My oldest struggles at school too - friendship issues as well as executive functioning issues. He's a lovely, lovely lad (well most of the time, he -is- a teen with all that that implies!)

it's heartbreaking to see him struggle and he can't understand, or control, the autistic elements that are part of this - seeing things from others' perspectives, the odd meltdown, seeing his own role in situations where things go wrong. We do at least have a lot of support for him, thank God. But it's wearing. It's so tiring.

@BleuNoir Thanks for your response.
With all that you are coping with at the moment you are very brave and resilient. I'm sorry to hear you cried today and didn't get the care you needed.

You've put some things in place which are helpful and you sound like a devoted parent. The GP might be able to help with counselling services that are free for you? You may have tried that already.

That you have your own bedroom means it can be a place of self-care and a haven for you. (I appreciate it may be a symbol or part of the loneliness too, but you do have it, and that space is yours - and you deserve a haven).

`I hear that you're working hard and have a lot on your plate with the children and your mother being sick. The atmosphere of criticism and your partner creating arguments is difficult to cope with.

I empathise and send all good wishes for continued strength your way :)

On the point of staying or leaving for good and if money were no object:

Caveat: please disregard if not / you know it already (I'm new to the thread / conversation). Sorry it's too much or off-beam for your present circumstances but it might be helpful for others thinking about this...

If a spouse decides to leave for good (and this would be for a different thread) as I understand it you would be financially provided for from the assets of the marriage upon financial settlement / court order. There would be a split of all assets including pensions, which can be more valuable than the family home in some cases. If a party has a chronic illness that stops them working, their needs may be taken into account in any assets split so that they are provided for - with the priority being the welfare of the children of the family who are aged under 18 years. Caregiving responsibilities of a party may also be taken into account as part of their case / needs in relation to not working etc and potential future income. The starting point for courts in many cases is generally 50 /50 and adjusted to need according to the value of the assets (put simply) - so it could be 60 / 40 or one party keeps the house and has a portion of the pensions for example - depending on the particular circumstances.

I'll stop there because I'm aware you're feeling sad and a bit broken -
and this might be what you have considered already or don't need to hear.

I appreciate your are in it - and it's been a tough day :)

I hope you have the most refreshing and peaceful sleep tonight full of wonderful and comforting dreams.

If a spouse decides to leave for good (and this would be for a different thread) as I understand it you would be financially provided for from the assets of the marriage upon financial settlement / court order.

Trouble is that can still leave you without enough money to find somewhere to live and the necessities of life.

Yes @ReleaseTheDucksOfWar there is injustice in the mix of marriage, disability, caregiving / children and financial equality which is why people feel stuck and some are. It's a painful place for sure.

@ReleaseTheDucksOfWar I recognise your tiredness. The chasing up every reasonable adjustment, navigating and advocating every step of the way for children... every little and big thing.

I'm popping off now. Thanks for sharing and welcoming me into the chat. Sleep well :)