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

@Echobelly pleased to hear the meds are working. A slighter lower grade job is good if it keeps the pressure off. Plus he’s likely to be more satisfied if he’s working on stuff rather than having to deal with managing things/people.

I think he's hoping to work up to lead developer, which is more managing projects than people. The last role which didn't work out was that, and management wasn't the issue, just that he hadn't done coding as part of a team in a while so couldn't provide quite the tech leadership they needed, but he feels he could do it once he's got back into programming in a team again.

That seems likely, it’s quite a different thing coding solo and then steering a team. Fingers crossed he gets it and gets the confidence/experience he needs to progress.

@Echobelly 🤞🤞 one of those is going to workout well for him.
And yes hopefully the meds will help him at work too.
Are you seeing a difference at home or does your dh feel the meds are making a difference?

We both notice a difference. He does seem calmer and more centred and I feel less like things are going to 'set him off'.

He's backed off 'helping' DS in the run up to tests last week and this week and I'm really hoping results will be OK because that might prove that the world will not end if DH doesn't intervene. But should have a talk about what 'OK' looks like.

Do you think it’s possible for an autistic person who suffers RSD to develop a mask of narcissism? I have read that individuals with RSD mask to avoid the pain. Could they literally replace their identity?

A small update from me
The summer has been bumpy in part because I’ve started to stand up for myself and put boundaries in place. Before, I would say very little because disability blablabla and then blow up. This time, I’ve said the same thing really but in a calm way, using words that dh gets (like he doesn’t get doing xyz is disrespectful or rude. But he gets when you do xyz, you take me first granted 🤷‍♀️🤷‍♀️).
Cue for him to actually start behaving better. I’m not transparent anymore. I don’t get a constant wall if I ask for anything. He isn’t neglectful anymore. Granted the demand avoidance is still here but he is making efforts iyswim.
As a result, living together is easier. I can even feel some care (I’m not sure love is the right word just now) towards him.

I think it also made it obvious to me that I can’t do everything at once. I have my own limitations and I need to choose where I’m putting my energy. And my energy just now is going into therapy and adjusting to my life as a disabled person.
This means living with dh, parallel lives with a small cross over. It’s not what I’d have defined as a marriage. But it’s the best we can both do - me scaffolding him when I can and him scaffolding me on practical stuff such as cooking. The rest is ours to do as we want. Neither of us have more spare capacity to give really.
It helps too we share similar values (we wouldn’t have got married otherwise) so we don’t clash on how to approach life. Just on how to live together 😁😁

That made me feel all warm inside @SpecialMangeTout3 sometimes we have to find something that works for us in our very uniquely individual and particular situations. It does sound like he actually listened to you this summer and took action, in his own way, and you are now able to put more boundaries in place and have found your voice, as a result. Therapy is great too!

That's great progess @SpecialMangeTout3 - I think things did improve with us when I learned to 'stand up' to DH, he did genuinely change some things and didn't expect a round of applause for it.

The American-run job turned DH down, I'm kind of relieved as I think it just had red flags as one that wouldn't work out for him. He hasn't heard back from Monday one so that's probably a no, he usually hears within a day or two when it's final stages, so that's a shame and lowers the chances of him landing anything before the end of this year.

He's had an interesting realisation about his anger, that he says with his ADHD he feels a bit like his brain/feelings were a 'ping pong ball in a hurricane' - he looked it up and found it was an analogy other people have used. And that means that sometimes his emotions just fly about. He reckons his mum is the same, and it explains a lot about her anger. He tried to broach it conversation with her today and she made it clear she did not want to have that discussion now or ever apparently. 🙄

That is a shame about the other job @Echobelly hoping something comes along soon for your DH. Glad that you are also able to stand up to him and that changes are happening. I'm going to look ip tharlt ping pong ball analogy thing, soubds interesting.

I'm still flip flopping a bit here re the future. DD is in such a fragile place being out of school, preteen hormones rushing in and with this being the last year of Primary I suspect she's also now anxious about Secondary, particularly as we probably still won't have specialist provision in place. I thought we'd finally recovered from the burnout, which happened nearly 2 year ago in Year 4, but it seems she's almost relapsed. H is being mostly really good and supportive with/of her but his attitude towards me is not always great.

The latest strife is now around finances as I have begun to query him re savings and outgoings etc (to see if we can afford online school or tutors for DD should we choose Home Ed as an option) and he is getting VERY edgy about this as he is in full control of the family finances. I nearly started a thread about it today but I already know people would tell me it's not fair and to LTB.

Am accepting that I don't actually HAVE to make up my mind now and that staying longer than I had thought I would doesn't mean it's indefinite either (black and white thinking is my thing!).

In the meantime I will continue to do some self work and try to find peace with the current situation.

Yes, I think this might be possible, as a (unhealthy) coping mechanism, perhaps. I'm not sure it replaces the identity, but it becomes such a fixed mask that it may appear to be their true identity (if that makes sense) to people around them.

Sorry to hear that @ItReallyDoesntMatterAnymore. I wonder if your H is resistant because of the change? Would a ‘drip….drip’ approach work where you ask him about it every other day? Hope you can get some progress and hoping your DD gets specialist provision soon, for some reason I assumed she was older.

Yes, it's probably about the change, he definitely struggles with change. I will try to drip feed, a good suggestion.

@ItReallyDoesntMatterAnymore dh is also very cagey about finances but with him it’s very much an issue with demand avoidance.
If asked to share info to do a budget, it is immediately understood as ‘she’ll want/ask me to do xyz’ ie totally unacceptable. That plus a general attitude to money where ‘it’s my money/her money and anyway everything is mine because I’m the one working’. 🙄🙄

Over the years, I found that I got more out of him by talking about the issue (eg in your case, what are we going to do next year re schooling and bringing up the cost of tutors than asking about finances straight. Basically going side ways, slightly avoidant in the questions etc…

Yes, there is definitely an element of demand avoidance there with H @SpecialMangeTout3 and as he is the 'working one earning the money', he also sees it as 'his'. Which is partly what is causing a bit of strife now when he realises that I may have a say too in financial matters.

Going side ways and drip feeding sounds like the way forward from here, I may have been a little too blunt in my bringing up if the subject. Despite having previously tiptoed around the subject for years!

Does anyone on here have experience with autistic burnout?
How did it present? And anything you did that helped your autistic person?

Im getting the feeling dh is going into burnout.
And I’m not sure how to handle it.

Thank you for this thread, I need to be here too for all the tips I can get and learn

Sorry to hear your DH might be heading into burnout, I'll share my experience of what I've experienced in the past and also how it presented in DD and how we helped with recovery. Hopefully he can avoid full burnout if he makes some changes now.

DD basically just kept going and going (and masking) before hitting burnout, almost like she was stuck on full steam and unable to relax/stop. She was very pale looking, frequently ill and was sleeping badly, her nail and skin picking was in overdrive, she zoned out a lot and often looked blank or not quite with it for moments at a time. Very rigid thinking around routine and determined to keep doing stuff even when she was probably too tired and needed a break. Then she just stopped one day and wouldn't leave the house, all she could do was watch TV and play games. Stopped drawing (something she loved doing), seeing people outside the house, no going out, no school and no to all playdates. Lost all interest in Lego or toys. Very low energy and almost apathetic in a way.

We dropped all demands, she was pretty much allowed to just chill on sofa with soft toys and familiar TV shows. We focused on primary needs like food, fluids and safety. I had to help with washing, toileting, dressing and baths whereas before she was able to shower herself and dress etc. It was quite the regression.

For me, when I've been clise to or in burnout, it's like all my senses go into overdrive and I hear everything louder, foods can become 'wrong' in texture and taste, lights are distracting and everything becomes too much. At the same time it was like I was moving in slow motion whilst everyone else was in ultra rapid and I also couldn't process what people were saying. I couldn't speak sometimes and would struggle to respond to questions.

What helped was basically just shutting down and becoming quite reclusive. Couldn't cope with socialising or going to busy places. Walking helped, particularly in the forest or in rural locations. Sitting in the garden or outside in good, particularly if practising mindfulness/awareness of surroundings. Bingeing on comfort TV shows, heavy blankets, warm baths and when we still had a dog, dog cuddles. I also have a spiky mat to lie on, scented candles to burn and lots of comfort films/books/shows/music to turn to which helps.

Spending time on a special interest is also something that I've heard is very helpful for burnout.

@ItReallyDoesntMatterAnymore thank you.

I’ve noticed that dh has more and more issues with sleep. Digestive issues too, headaches, more tired etc….
He is muttering to himself a lot more (that’s his way to self regulate). It’s getting clearer. He is moving around too which he never used to do.
And YY to zoning out more, usually on his iPad. But that happens when he is supposed to work too so that a worry.

I have no idea how I can help because I’ve basically paired our life down to the bare minimum. He is doing whatever he wants when he wants to. So plenty of time devoted to his special interests. I can’t take over the practical stuff like cooking that’s left.

But it’s like watching a car crash in slow motion. He won’t slow down (farming mentality).

It does worry me.

Welcome to our little group.

Any question or comment, just jump in :)

It does sound very much like he is heading towards burnout @SpecialMangeTout3 and I know you've already made it all low demand for him already. The only thing I can suggest is sneaking in some suggestions (without it seeming like a suggestion) for things that might help prevent burnout, activities that might offer a release of cortisol, nurturing foods etc. Depending on what he is into, which might make it tricky!

Watching a carcrash in slow-motion sums up how it was with DD a couple of years ago.

Welcome to the thread 😊

Things that might help your DH @SpecialMangeTout3 (if he is the kind of person likely to try these types of things)

For calming central nervous system :
CBD oil/drinks, Ashwaganda, Rhodeolia (sp?)
Baths with Epsom salts/magnesium
Magnesium lotion
Aromatherapy pulse ball rollers from Tisserand (also room sprays)
Kalms

For sleep: phenergan/NightNurse (once or twice a week) or Nytol/Kalms Night

For a calming moment or distraction from world:
Podcasts or audiobooks, preferably whilst on a walk or pottering in garden/sitting outside

Jigsaws, building models, painting or something like that.

Again, depending on personality and hobbies of course! Lots of men and people in general are maybe resistant to any of the above suggestions there might be one thing that helps in there.

H had his final part of the ADHD assessment and was diagnosed earlier this week. Still processing that now, I mean I knew but now it's kind of official too (although he is only telling close family and friends).

One thing that stuck with me (I had been asked to join assessment for 15 minutes to be asked questions) was a comment from the professional dping the assessment. After I'd been very honest about the behaviours from H that I struggle with (throwing stuff, short temper and saying hurtful things on impulse) she sort of shrugged and said that ADHD is like marmite, you either love it or hate it. I mean, I can see what she means but it sort of felt like I should either be ok with,and accept as part of ADHD, these behaviours, or not. I might have misinterpreted her of course!