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

@Bluebellforest1 I am so worried about what's going to happen. Him not wanting to talk about any possible solutions makes me want to scream.
We still have a mortgage, we still have dependent kids, I'm 60 so couldn't find anything to support my family.
I am so not living the life I thought I was cultivating for the last 25+ years.
Seeing a solicitor would mean admitting defeat, I feel defeated though. I don't even know what I'm fighting to hold on to anymore.

Ok as someone who is diagnosed with ME (or CFS as the ‘old’ name), I just want to point out there are very specific criteria to meet to be diagnosed with ME. It’s not just ‘oh you’re tired and we can’t find anything wrong with you’.
To have ME you need, yes fatigue that has lasted more than 6 months, problems with sleep (can’t sleep well, unrestful sleep) and most importantly PEM.
PEM is post exertional malaise and mean that you’re experiencing a Myriade of symptoms (not just tiredness) from normal day to day activity. So basically, a trip to the shop will put you in bed or with increased headache, pain, brain fog, digestive issues etc… 24~48 hours AFTER the event.
Another way to put it, is that when you ask people with ME to exercise, they dread it and dint find any positives. Whereas with other conditions, people might struggle on the spot but feel better afterwards. (That’s the result of one the latest research study in ME and PEM).
It is a recognised neurological illness. It can kill and even if the mild form, you’re only able to about 50% of what a normal person does.
It’s a brutal illness that now shares a lot of characteristics with LC.

It also takes years to be diagnosed.
Like other ‘difficult to pinpoint’ illnesses, people are ill for years agd years before tgey get a diagnosis. And expecting them to buckle up because they don’t have it yet is harsh imo. The same than expecting an autistic person to act NT, get over the autistic burnout etc… because they aren’t diagnosed with autism yet. It’s not going to,work.

Having said all of that @Ohdostopwafflinggeremy , I think it’s a hard situation to be in.
From what you’ve said, I’d suspect more an autistic burnout than ME. But the danger for him is that it will be assimilated to depression by HCP and won’t be handled properly.

As the person who is ill, I don’t think you can do anything for him though.
I would concentrate on you, the dcs, making your life as easy as possible for you just now.
And let him deal with it. He seems ‘on the ball’ re his appointments and is been followed by a lot of different people. That’s good! It means he can talk to them about all his symptoms. It’s not (just) you who has to listen. Whatever is going on will come out.

I have to say, I know he has high BP, but I’d be tempted to have him stop the meds to see how he feels. Because it’s ‘just’ that, it will show up,straight away. And migut allow for a discussion on medication, balance between risks and quality of life etc…. with his GP. It will depend a lot of on how high his BP is.

@SpecialMangeTout3 Thanks for that detailed insight into ME. Dh does not have ME. He thinks it could be, along with a whole list of other conditions. I am convinced its his HBP medication that's causing the fatigue.
He won't consider that though, it's the constant insistence that it must be 'something' that is so draining. His BP is well within the normal range btw. He doesn't want to discuss solutions, other possibilities. In some weird way I think he is hoping they find 'something' because 'sideffects of a medication' isn't 'something'.
I'm not dismissing his issues, he's just been stuck on some groove for months now. I know his symptoms off by heart, we need to talk about moving forward at some point though.
The kids and I are trying to sympathise only enough before he goes into the 'woe is me' speech.

@SpecialMangeTout3 i have a very close friend diagnosed with ME, I see how debilitated she is. I am also diagnosed with Fibromyalgia because, as my GP put it, “none of the tests we’ve done have shown anything so Fibromyalgia is the default diagnosis”.
OP’s husband goes out for a daily walk, that doesn’t look like ME to me, but it’s likely to be the diagnosis.
@Ohdostopwafflinggeremy please don’t think that seeing a solicitor is admitting defeat, it’s getting your ducks in a row, and getting things in plac3 for your future. Do it please x

You can work with mild ME. So you can also go for a walk. It might be one of the few things you do though. It’s very variable depending on the severity of the illness.

And yes I get your GP comment @Bluebellforest1 .
The outdated type of comment from a GP who hasn’t kept with the research for the last 20 years. It’s also a reflection of what’s available on the NHS.
But in reality, the immune profile of people with ME is very specific. Their muscle cells are different too etc etc. Lactate levels vary in a ‘crazy way’, aka in the same way than someone who has run a marathon when they’ve been vaguely pottering around in the house.
These tests aren’t available on the NHS though. So I can see why, to a GP, it looks like ‘well we can’t find anything wrong with you so it must be ME/fibromyalgia/FND/anxiety (gasps!)’…..

As I said, I agree that it’s unlikely to be ME. Or at least not from the description from @Ohdostopwafflinggeremy
I do feel for him though. Because there’s nothing worse than knowing there’s something wrong with you and being pass from pillar to post. Regardless of the ‘cause’ (whether it’s autistic burnout, ME, anxiety/depression or medication side effects).
Plus of course, it doesn’t help him feel better!

Hi everyone. I have been on MN a long time and name change quite a lot. I have posted SO many times about my DH and our challenges, always get LTB etc.
Today I posted and mentioned he is autistic for the first time. I can't even tell you the difference in the tone of responses to normal.
Someone helpfully directed me here, presumably to this thread, which I had no idea existed!

I have ADHD and DH is autistic, and I'm pretty sure our 2 very little children are ND too. We had no idea about any of this until probably a year or two ago, which has been absolutely eye opening considering all our struggles over the years.

I am in a really low place and considering ending my marriage, and I hope this can be a place where people understand and don't judge, maybe I can vent, or just read other people's stories to make me feel less alone in it all. I have no idea what I'll do, probably stick it out, but I'm so unhappy and although I haven't read any of this thread yet, I'm hoping I can pick up some good advice from this and past threads as well as maybe contribute myself too.
I'm not perfect myself and I feel like a complete failure in most aspects of my life right now and I'm just not getting the emotional support I need from DH, or anyone really.

I feel like that was a long introduction with still only a tiny snapshot of info from me, but anyway. Hello and I hope it's ok if I join? X

Welcome @Catssitonhats

I think you've described the aim of this place perfectly....

....I hope this can be a place where people understand and don't judge, maybe I can vent, or just read other people's stories to make me feel less alone in it all

And I'm sorry you're in a low place 🙁

I think that many people get into a low place in these relationships, especially undiagnosed ones. I think having a diagnosis could open the relationship back up again as we start to see people for what they are, there advantages and disadvantages. I’ve not mentioned before but I’m pretty sure I have ADHD. I’ve come to see that my feelings expect too much from people. I’m met with my mum ASD whose feelings require very little from people. We are like opposite ends of a scale so the gap and the “damage” feels massive. I’ve got myself very down at times. I’ve had to learn that sometimes my feelings are not completely on my side. Having a diagnosis has made me able to separate myself from my feelings. It’s made me less needy and angry at my mum. If this makes sense. Perhaps as you all get used to your diagnosis this will happen. Maybe take less personally your husband and look for what you need elsewhere knowing it’s just his ASD and he not being deliberate. You are not a failure, having ADHD is hard because everything feels so big. Then on top of that having an ASD partner who can’t relate is so rejecting. Give it time.

"We are broken, our family is broken, and i don't think i want to try and fix it"

The words I have said in my head countless times over the last few years. The words I could never say out loud to myself, let alone to dh, have been said.
I thought life as I knew it would come crashing down around me, it didn't.
No raging argument, no tears, no begging, no promises, nothing really. Just sad, sad that the words have been said, that the words needed to be said at all.
27 years and in one sentence it has irrevocably changed our whole family's future. Sad, so sad.
I have no idea where we go from here. I have promised dh nothing will change until we get him through this 'illness'. I don't hate him, I actually feel sorry for him, and us.
Thank you all for giving me the strength to even get to this point, I know you will help me through whatever comes next too.🩷🩷🩷

Oh Waffling, I’m sorry, I know it needs to happen but it doesn’t stop the pain and distress being real. Be kind to yourself. Do what you can for DH without compromising yourself further. Hugs (if they’re your thing).

I'm a huge hugger, so thanks @Pashazade 💐

@Ohdostopwafflinggeremy
hugs from me too, I know exactly how you feel. I had a huge row with h a few years ago now, he had said some horrible things to me and I shouted that perhaps it was time we divorced. His only concern was that I’d “go after his pensions”. not true as I have my own. He sulked for a couple of days then it was never mentioned again, he’s probably forgotten, but I replay it in my head often. I wish I’d followed it up at the time.
More hugs for you, and 💐

@Ohdostopwafflinggeremy 🫂🫂 from me too.

and YY about not compromising yourself.
Sometimes, things bubble along (not always well) until that last straw.
It doesn’t make it easier.

Do you have an idea of what next steps you want to take?

🫂 @Ohdostopwafflinggeremy

I've mentioned this before, DH special interest is work. Talking about work, going to work. Nothing else in his life matters. It is just constant talking and one-way conversation about this one subject.

I'm so lonely and feeling depressed today.

Feeling invisible and single without being single

@Ohdostopwafflinggeremy lot's of 🫂🫂🫂

@SpecialMangeTout3 Dh has an appointment with a Neurologist now. I'm hoping he gets some definitive answers on his condition.
Other than waiting for that, no, no idea what will happen next.
I know he can't think of anything other than himself at the moment. His 'illness' is all consuming.
Our approach to this is so telling. I desperately want a diagnosis, no matter what that is, so he/we can move forward in some way. He now doesn't want to know as it may be the 'something' he has been insisting it might be for months.
Ideally, he has 'something' that is treatable and we can then get back to normal, talk about what our future could look like apart, or (my worst fear) he actually has 'something' and I can't leave.
I'm trying to stay as positive as I can though.

Errr… can I gently point out that even if has something ‘untreatable’, it doesn’t mean you have to stay?

You wouldn’t be separating because ‘caring for him’ is too much, but because if all the other issues in your marriage. None of which are going to disappear if he has indeed something lifelong

@Georgeismydog how is your dd doing? And how are you coping?

I think feeling unseen and ignored is awful,when you’re in what is supposed to be THE place where you’re going to be seen and cared for. It’s not just feeling lonely. It’s the pain of feeling lonely when you’re not supposed to. I suppose a layer of grief too?

@SpecialMangeTout3 I completely agree that my reasons for wanting to leave started years before and regardless of dh's prognosis these reasons are not going to dissappear.
I would love to say that no matter what his future holds health wise I will not change my resolve.
I'm trying not to think of 'worst case scenario' as it's terrifying.

It’s terrifying because somehow, in the middle of all of this, you still cares about him. At least at some level.
Otherwise, you’d have no issue turning your back to him.

And it’s really hard to put yourself first. Esp if you haven’t done that for years or if you’ve been nicely conditioned to do the caring. Always.

Do you feel you can carry in putting some distance between you? Just reminding yourself, it’s his health, his choice, his responsibility. Not a burden for you to carry for him iyswim.

Is that really love or is that empathy for another humans suffering that you feel you have to fix? Or is that guilt for no longer loving them. We have to remember we are still loving and compassionate people despite not being able do it anymore.

Welcome @Catssitonhats - yes, it is refreshing to be able to talk about the challenges without the response being 'LTB' every time when that's not what you're even asking about.

DH has signed contract for this one. I really hope it works out, especially as it's going more back to what he did before project management, which was the thing where jobs never worked out in the long term, he always got hit with criticisms that were kind of personal and vague and not criteria he could just meet, that I think are to do with the ADHD/autism.

Our oldest (nearly 17) has just been to GP about autism assessment as well. Interestingly @SpecialMangeTout3 , they are also looking into whether they might have ME/CFS. Blood tests just come back normal, they have been complaining of mind fog and unrefreshing sleep that they think date from after them getting shingles (!) 18 months ago. I wonder if it could be a long post-viral thing rather than ME/CFS per se, though the line between those two things is vague. My sister also had post viral illness around same age that hung around for about a year, but she got over it. My mum has had pretty bad ME for 30 years now, so I know fairly well what it can look like, but obviously it can vary a lot from person to person. I worry, if it is CFS, whether DC is heading for a terrible collapse like my mum did after a period of unexplained symptoms. That said, DC got through a solid year of revision for GCSEs last year and came out with outstanding results, so if there was any time for them to totally collapse it would have been during or just after that period.

I also wonder, if they are autistic, whether it could be related to that and tiredness from a certain amount of masking and just doing a LOT of stuff.

There seems to be a lot of people who have autism and ME (and POTS, EDS, MCAS). I’d love to know what’s the link! But I totally agree with you re spending so much effort masking making ME worse. I think it’s true for a lot of other things such as trauma, medical trauma etc etc…. It seems to just pile on the top of each other really.

I don’t know if you’ve come across the new guidelines for ME re pacing and not exceeding your energy enveloppe. If you feel your dc might struggle with it, then it might be worth looking at it.

ME is a shit illness. I dint wish it to my worst enemy tbh.