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

Hi again everyone. Thought I'd update you. Almost 2 months now of gradually getting used to dh's Parkinsons diagnosis.
I can say now that coming to terms and accepting his diagnosis has been easier than dealing with him being ill these last 5 months.
Thankfully his medication seems to be working and it looks like he will get back to work soon, in some capacity.
Initially, when he first got diagnosed I was so angry as I thought i can't leave now, I can't be thè bitch that left her sick husband. Now that his symptoms are under control and he's almost certainly going back to work I have been able to think clearly again.
I was going to say dh and I have 'talked', in reality I have 'talked' to dh.
I remember how hard it was to have that first 'talk' way before he got ill, subsequent talks seem to be much easier or maybe I stopped caring as much.
Dh has apparently never thought his ADHD has had any impact on his life, when I pointed out how he has been over these last few months and did he attribute any of that to ADHD, he said no, he didn't.
I dont know if you remember but he was non-verbal for weeks, then when he did start talking the one & only subject was him and his symptoms. He completely and utterly shut me and the kids out. Anytime i tried to advise or suggest anything he would flip out, accusing me of not understanding. He actually didn't want help or advice or suggestions, he just wanted us to witness his distress and feel sorry for him.
Now we are coming around to accepting his Parkinsons, something that can be managed and he can pick up where he left off. He has literally forgotten the months of emotional abuse he intentionally or not inflicted on us. He'll say it was such a hard time for him, what he went through. 😪
I realise I have given my last £uck on trying to be diplomatic and not upset him when I bring things to the table now.
My mindset has changed. For years, I have been trying not to rock the boat, trying to placate everyone, if I didn't say things out loud then they weren't real.
Dh says he will do anything to save our marriage.
So far he's read a couple of articles online about ADHD and can relate to some of it. I'm not holding my breath for any major shift in our relationship as I realise I don't care enough anymore. I dont want the things I thought I wanted, the things I feel after 27 years we should have.
The term 'Flogging a dead horse' springs to mind.

Ugh he’s been such an arse the last two days, snapping at the kids, being really on DS’ case. I need to be doing some work but I have to get this off my chest

Had catch up with teacher on DS’ end of year report, and afterwards DS plucked up the courage to tell DH that he felt DH was being overly negative about it. It was generally a good report where he had increased the number of subjects he was on target for and his test results were generally pretty decent. We travelled back from the meeting separately as DH was in a rush to get to work, and DS admitted to me he couldn’t sleep last night as DH came to talk to him about the report and DS said ‘he didn’t sound at all proud of me’, and then started crying a bit so I gave him a hug and apologised that DH tends to lead with his anxiety.

It's good that DS has a face to face psychiatrist appointment this afternoon and I’m going to encourage him to talk to her about how this made him feel, as we’re having sessions with her too and I think it’ll help for DH to hear this as feedback from her.

Miraculously, so far all this has only made DS sad and a bit frustrated, but not made him angry and disengaged if nothing he achieves is good enough for his dad, which is my fear is what could happen once the teenage hormones really hit.

I need to make DH understand that if you’re too negative because you think, I dunno, people need to shamed and lambasted into doing better, they won’t listen to you. There is plenty of stuff for DS to be proud of and recognising that is not going to make him complacent, it will give him the confidence to accept justified criticism. Unjustified criticism, which DH too often gives, just makes people tune out.

Hi @Ohdostopwafflinggeremy , I’m very pleased to hear your update. I was just thinking of you and also @ANiceLittleHouseByTheSeaWithACatCalledBrenda and wondering how things are progressing.

Your attitude shift sounds very healthy. Worrying too much about rocking the boat hasn’t really worked out, has it? Sometimes the thought of something is so much worse than the reality. Once you dip your toe in, you realise oh, it’s not actually the bad thing I thought it would be. Good for you! It’s about time you put yourself first.

I do remember your descriptions of the ghostly figure wandering about only speaking to update everyone on his symptoms as if you were all sitting and waiting with bated breath for his ailment updates!! And then him getting very frustrated when you made any kind of suggestion. Almost as if he didn’t want to address it, but preferred to wallow in it! It must be a relief for him to have a treatment plan, but also to know he wasn’t imagining it. So good he’s going back to work soon and that you’re no longer subjected to hourly Ailment News headlines!

As for where you go now, well, the ball is in your court I feel. You don’t have to feel guilty about leaving when he is struggling with his health as things are definitely looking up. You don’t have to worry about rocking the boat or saying what you think. It’s good he’s facing up to some stuff.

BUT, as many of us have done before, things get just better enough for us to think maybe, if he keeps this up it might actually work, only to find ourselves back to where we were six months later, realising long term change won’t happen after all. What is it you want most of all now? Do you want the marriage if some non negotiable conditions are met? Would that be the preference? Or would you actually now prefer a cordial break up and your independence and pink kettle handed to you? Have you come too far?

I too am overexplaining everything. It's like I have to put out a lot of disclaimers not to cause a scene every time I suggest something. It's tiring and I need to stop. My brain can't take this anymore.

@NoviceVillager Thank you, I will listen to it!

@Sweetandsaltycaroline I recognise the future faking so much. I have been living in the middle of it for 20 years not (trying not to get bitter), with the promise that "things will get better in the future", while absolutely nothing has happened. We're in the exact same spot as 20 years ago and I have spent the time trying to regain my health while being absolutely everything for my partner.
The only thing that is different is that I am older, fatter and my career is down the drain.
My partner seems absolutely fine with the whole situation and just gets very unfomfortable when I discuss my feelings about it.

@PollyHutchen I have read about your situation and it seems incredibly painful and difficult to deal with. I would quietly remove myself from even seeing stepson and his partner. How can you ever relax around people who can and most likely will make up scenarios and expect you to defend yourself? It sounds even worse now that they have a baby dragged into it. What if they accuse you of doing something to the baby while babysitting?
So sorry, it must be heartbreaking.

@Echobelly i do think with several autistic people there is an inherent need to focus on the negative aspects and there is very little understanding of how that might make the other person feel to receive that. It’s almost like “but I’m right!!! These things are not good. What’s wrong with saying it like it is?” That whole notion that ‘sometimes it is better to be kind than it is to be right’ is completely lost!

Distinctly remember my DS being about 4 and us having a wedding to go to. Close family member. We’d bought him a little suit to wear. He wasn’t overly keen (but equally wasn’t dead against wearing it.). I was trying to persuade him it would be fine. All the chaps would be wearing them. My dad came round and I was trying to get him to be positive about the suit. All he kept saying was how uncomfortable they are and how he hates wearing them!!! I pointedly coughed and muttered could he please be positive about wearing a suit as we were trying to get DS on board with the idea. But he actually couldn’t not do it. He just kept repeating “but I don’t like wearing them! They’re uncomfortable!” He couldn’t grasp the notion of saying something positive to present a positive view to another person, as this was what was required in the situation. All he could focus on was stating the negative, because in his view that was correct.

You or I can see that a situation may have both positive and negative aspects. Yes a suit isn’t the most comfortable thing to wear but on the other hand, everyone will be in it together and at weddings it’s nice to all dress up. My dad could only see the negative. And he couldn’t NOT state it.

Sounds like your DH suffers from (a) not being able to see the positive aspects of the report, (b) being unable to see that the other person needs to hear positive, not negative, comments, so his negativity is inappropriate to the situation at hand (c) not being able to stop himself from stating what he believes to be correct. Combination of being naturally negative, being right, being rigid, and lacking empathy. Really hard for you to get through to him. Really sad for your poor DS who is doing so well by the sounds of it and your DH is making the poor boy feel shame and anxiety when he should be celebrating his achievements and seeing how proud his parents are.

Do you think your DH is proud of him at all? Does he not see any of DS’s achievement?

He's not relentlessly negative, but when he is negative it can be really extreme because frankly I think it's all his self doubt and anxiety pouring out. DH was an academic high flyer who I guess probably feels insecure that he's never had a solid career which at least we know now is because of his ND, and this comes flying out when it comes to DS.

I think he's formed this idea that DS is years behind his peers, is set to fail terribly in exams and life unless he can intervene somehow, that the teachers telling us he is engaged and doing OK are all lying etc. Ds is predicted 5s and 6s with maybe the possibly of 7s in 2 or 3 subjects which is more than fine, it's better than average and I think DS can do it. And even if he doesn't that's not the end of the world.

Mine seems entirely comfortable with developing even worse mental health issues. For example I knew someone with agoraphobia and he said he saw himself going that way. Totally calm, almost welcoming of it.

I was too shocked to speak but I feel as if I need to raise it. It isn't enough that he has multiple mental health issues on top of the self diagnosed ND, he's anticipating and welcoming of more.

That’s sad , he is projecting all of his shame onto his son. He isn’t his dad and he is getting support so life maybe completely different for him. The sad thing is we often repeat our childhood and pass down trauma so if your husbands parents weren’t supportive then he is following down the same road. The only way out I think is to be supportive of who he is and to accept his difficulties. It sounds like your husband has perhaps not accepted himself and given himself sone slack for the way his life has turned out. If he could be softer on himself he will be softer to your son.

Thanks @BustyLaRoux
I think i'm emotionally spent, to be honest.
The bottom line is i dont ever want to be intimate with dh again, we haven't shared a bed or room for years, there is no attraction anymore on my part.
There is no intellectual attraction, he has no views or opinions, we dont discuss, debate or even converse.
I dont enjoy his company as he is no company.
The one thing we should have in common, our children, he isn't that interested in either, turns out.
I have absolutely no idea what will transpire over the months ahead, but what i thought I had to fight for, isn't really worth fighting for after all.
The plan to not upset the kids last year in school still stands, for me. After that, no idea, yet.

Then you should absolutely do what’s right for you! What you describe sounds shit, to be frank. You’re not here to make his life tolerable. Do something for you. I feel an independent life doing exactly what you want, without worrying about being someone’s support animal, is just the ticket!

@Echobelly is there a sense with DH that academic achievement is the only achievement worth having? My dad is like this. Always made my DB feel shit because he didn’t get as good grades as me or go to university. Ironically he earns far more than me so that goes to show academic achievement counts for shit!

With my DP’s son there is also this sense that he must prevail academically. Actually although his spoken language is very formal and he is very forthcoming (which when he was very young was mistaken for intelligence), academically he is very low. He has dreams (fully encouraged by DP who has always told anyone who would listen how bright his son is) of becoming a specialist in a highly sought after field (think very academic with years and years of study and strong ability in maths). It’s totally unachievable for his son though. He may just about pass maths GCSE. That’s it. He isn’t going to be able to study in this career path. But DP is still encouraging it! I think it’s the notion that academic achievement and a very good salary are the marks of success. Anything less is kind of seen as failure.

I don’t want my kids to struggle financially of course. And I wish I had worked harder when I was younger instead of partying and maybe done something different with better prospects. Or travelled the world perhaps. But I do enjoy my work and I am good at it and I do make a difference. I am a good parent. I am a good sister and a good friend. I am happy. I am healthy. Arguably, these surely mean I am successful. But my dad will only equate success with academic achievement, salary and material possessions.

Is that an autistic thing? Or are we all geared to think like that?

It sounds like you've reached a point where you are ready to start planning for a future for yourself @Ohdostopwafflinggeremy if your kids have one year left at school you can begin to plan, get your ducks in a row and begin to find things that bring you joy!

@Percypigspjs - that's a really good way for me to approach it with DH, that he needs to forgive himself more when it comes to DS.

I need to tell him after today that please can he not set DS work tasks during the working day, or maybe at least wait until towards the end. He won't have time to assist and he'll be stressed and more likely to lose his temper. I want to remind him that I think being harsh on DS during last summer is what I'm pretty sure led to his meltdown in the first round of tests.

@BustyLaRoux I think it's less that he thinks you must be academic but more that he just does not know or understand any other route. I worked in education publishing for 8 years so I know a lot more about that than he does, and also what normal exam results look like. I work and have worked in fields (real estate and facilities management) where many non academic people have very successful careers.

Thankfully he doesn't compare DS and oldest, who got all 7s, 8s and 9s at GCSE, that's one thing he'd never do.

I think there is such a strong need to blame. But also defend against any potential blame or criticism being levied. “Quick blame first, lest I should be blamed!”

Meant to quote @Percypigspjs

So do you think they blame the children for not performing well incase someone blames them. Because they are ashamed of their own ND?

I can only imagine what words have been internalised over the decades of growing up ND. I’ve heard a lot myself. I expect many layers of behaviour have built up to protect what must be a very ashamed young child at heart. It’s sad but it isn’t anyone else’s responsibility to fix this if the person can’t accept this themselves.

It's going to be a tough conversation to have with the therapist. I'm a bit scared of it because, well, his response to this could end our marriage. If just gets defensive and acts as though DS is the problem then ... that's an issue.

Definitely this. Shame leading to blame. I suspect it would take years of decent therapy to unpick this.

It took H many years to fully accept and understand DD's diagnosis, although to be fair, he was always very supportive of making sure her needs were met at nursery or on holidays. Never questioned why I insisted on sunflower lanyards and Special Assistance at the airports (we've travelled a lot!). Yet, looking at potential ND in himself has taken a long time and he wasn't particularly supportive of me when I first went to the GP for a referral (attention seeking might have been what he described it as 'jokingly'). Now he is on the pathway to his own diagnosis and admits that he is very self-critical. There is a lot of internalised shame there. There is no excuse for the behaviour over the years, but I think I'm finally understanding it all a bit better.

Looking at myself I think I used to take the attitude that 'why can't people just be logical about stuff and less emotional', when younger, despite me likely being more led my emotions that I realised at the time. Maybe I shamed people for getting upset over what I probably deemed as not worthy getting upset about. Yet, if it was something that I could relate to, like loosing a pet, I would be totally supportive and understanding. Whereas if it was more practical, or in my opinion at the time, trivial, probably led to a less sympathetic response. I also never understood ambition and 'doing well' and probably just shrugged if someone got a higher grade, not in a mean way, just indifferent as couldn't see the point. Yet, to the person with the higher grade it might seem unkind. Which then led to me feeling shame for not being kind and supportive. So yes, I felt a lot of shame growing up and my coping mechanisms probably came across as me being indifferent or not caring. Possibly.

I'm trying to make up for it in the latter years, though, and found that I've been helpful in supporting and helping young people out of school for MH/ill health , in a previous job, as somehow can relate to and understand them. So some good has been 'put back' into the universe.

Sometimes these things need to come out in an open and honest conversation, as scary as it seems at the time. Hope it goes well 🫂

What I think I want to say is that he needs therapy to understand his rage at DS. I also want to say to him, how would he feel if I turned round to him and said 'I feel totally taken advantage of with your so-called project you were working on, you never wanted to start it as a business, you never made enough effort to launch it, you were clearly just freeloading off me while I paid for all the holidays and emergencies and if you really cared about supporting the family you'd have been out networking every day and demo-ing it week in week out, but I can only conclude from your behaviour that you weren't trying and don't care about your family, and you were just enjoying tinkering away and watching YouTube videos'

Now I don't believe that, but I could have decided to believe that as a narrative and to lambast him about it. If he thinks DS obviously isn't trying, I could have projected that narrative onto him and his product just as much.

Avoiding leads to continued misery and resentment.

I can’t believe how many years I’ve wasted on waiting for my mum to be a proper mum to me. She has the potential but she just can’t be it. I think we can see the potential in people but we just can’t make them do anything about it. We can’t make them be the partner or father or mum that we want them to be. We have to take people as they are not what they could potentially be. If they wanted to be different they’d be knee deep in therapy.

@Echobelly Agree that it sounds like your DH could do with some therapy to understand how his rage/shaming and negativity affects your DS, do you think he with would engage with that and willingly go to individual therapy for this?

I ask because there comes a point where we can no longer put our energy into helping or nudging our OHs/DHs to be 'better fathers' or to try and explain to our DC's why their parent acts that way to avoid them getting hurt and try to mend/fix our DC's relationships with their DF's.

Yes, we need to be clear that the behaviour is not ok and we support our DC, but I do wonder if the choice to go to therapy ultimately must come from the OH/DH themselves. Most of them seem oblivious to the effect their behaviour has on their DC, and there is only so long we can nudging them for.

Part of me feel like a fraud or hypocrite for saying that as it's exactly what I've been doing for 10 years and I'm still not quite out of this marriage yet. But, I feel that H is beyond this now. He might be getting his diagnosis but for many, many years I tried to encourage him to read books, articles, seek therapy etc and he was unable to engage with any of this or take me seriously when I saud his behaviours were harmful.

Perhaps other OHs/DHs will engage more easily but this is a lost cause in this house now.

Just as an aside, is it bad form to diagnose other people's DH's on AIBU threads?