Husband late diagnosis of autism-i cant cope with it

[Itsallmakingsense]

Before I start- I want to preface this by saying anything i write I do not mean to be offensive to anyone in anyway and I apologise if it comes across that way.
This is just my personal experience of my own life and how it is impacting us on a family and my emotions around it. It will be long, sorry.

Background- we got together when we were both 16, we are now 40 so have been together a very long time. I was attracted to my husband because he was popular, cool, attractive, brave, and a bit bad. I was a sensible plain Jane from a sensible family, only child.
I loved being his girlfriend. Once we moved in together age 21 I noticed a few things , such as not wanting to socialise. I thought this was very strange as he'd always socialised before and had lots of friends. Life went on, he worked nights and i worked days so weren't together a lot, and at weekends I saw my family and he either stayed home or saw his. I would go out with friends , he stopped.
Once we had children, I started to notice more things. He struggled to engage with them , he is very good at rules and routines and is quite a strict parent but he isn't able to really play with them. There have been countless times where we have been dancing to songs in the living room and he is sitting staring straight ahead.
Over the years , this all culminated into me starting to dislike him very much. I felt our children were suffering and i was doing all the emotional stuff, I felt totally neglected as a wife , he never initiated intimacy, we would often sit in silence and he would never start conversations with me and the worst one is when I chat after a few mins he tells me to stop. He also became reclusive other than going to work. I would take the kids to see his family and he wouldn't come with us.
This built up and i came to the conclusion he doesn't love me or the kids, isn't interested in us.
Time passed and he had what we thought was a nervous breakdown/mental breakdown or something. He couldn't function at all- wouldn't leave his bed or eat. He went from being a smart man to looking like a homeless person, didn't wash, and this went on for a year at that severity.
Had involvement of mental health teams and a psychiatrist who even now see him every week at our home. They thought he had psychosis.
After much treatment, and therapy they made a conclusion that he wasn't following the expected recovery path , or responding to the medication as expected or engaging in the therapy as expected. Based on this and things he had told them they decided he has autism and was actually suffering from autistic burnout.
He was furious with this diagnosis, but after much talking we have both come to the conclusion that it is right.
He has admitted to me that the way he was as a teenager was all an act. Behind closed doors he was very different which all came out when we started to live together. There are also other members of his family who are the same.
Everything now makes so much sense. When he was not engaging with me and the kids it wasn't because he didn't love us but because he was over stimulated and would zone out.
He has also said that he doesn't feel love or have any feelings for anyone - he doesn't understand what that is.
The trouble is, there has been untold damage to our children and our marriage that I can't come back from. I have wanted to separate from him for years and haven't felt strong enough. Now I do feel stronger but now have huge guilt as his behaviours that I interpreted as intentional were not.
The hard part for me is I'm an extremely emotional person- the polar opposite to him. I pick up on the slightest chsnge of emotion and i now feel highly anxious in my own home as I'm always over analysing him.
Is there any way forward in this marriage? Although we now have an answer, non of his behaviours have changed and he gets worse as he gets older. I don't think I can spend the rest of my life with someone who can't show love? I also feel lied to from when we were teenagers. The man i met wasn't him at all and he was fully aware of it.
He also manipulated many situations where he deflected everything onto me and made me feel I was the cause of everything and his behaviours were normal.
Everyone that knows us knows how he is. They never expect him to attend any social events for example. He can also come across as rude and standoffish. My parents and friends don't like him. They don't know his diagnosis as he won't let me tell anyone.
Our kids are teens now and our son has problems . I feel resentment over this is won't lie.

I havnt seen anything about 10 pages, the quote thing only shows me what PlopSofa said before that, I didnt realise you were having a conversation

Me and my DD are autistic, I have to spend my days being positive and optimistic because if I let the negative trickle in I could get very upset 😅

The house doesn't clean itself and the food doesn't cook itself, someone has to do it for you, so technically it is a burden for them. I'm really not saying you are less worthy or do not bring something to society, but the fact of the matter is that our disability IS a burden to other people. It is what it is

"Burden" can sometimes have implications that are not always helpful and I cringe when its used in the context in this thread. But I don't really know what other word to use.

In the context of caring for someone, "burden" often refers to the physical, emotional, and sometimes financial strain that a caregiver might experience. This can include the time and effort required to provide care, the potential impact on the caregiver's own health and well-being, and the emotional stress of seeing a loved one in need. But because I love them, it's just something you instinctively do because you need to know they are OK.

While caregiving can be incredibly rewarding and fulfilling, the term "burden" acknowledges the challenges and hardships that can come with the responsibility. It's important to recognize and support caregivers, ensuring they have the resources and assistance they need to manage these demands effectively. But sometimes the resources the carer lacks is not because the state services won't provide it or not because they can't afford it but because the person who needs the support will not accept the help offered preferring instead to let their family member carry, what can then be a burden.

If I just had my Mum to care for, I could cope but I can cope with three people plus a full time job and my own family. So when the opportunity arises for me to get them a little help to lighten my load and they opt not to take it because they want me to do it all, that is a burden because I have no life and they are not considering me.

The OPs husband, has helped create a family, who he now declares he has no feelings for, he will not accept any help, he doesn't contribute to the home, emotionally, physically or practically, but not through inability, because he has chosen to withdrawn...you can tolerate something like that for a while, everyone lose their way but its not acceptable permanently as its a burden she should not have to bear if he at all cared for his family. He checked out of the family relationship and she is now an unpaid carer, time to kick him out.

A burden is something that is difficult to bear (by its definition). Something unpleasant.

The way you’re framing thing is missing something important. We’re all dependent on each other. We all have different strength and weaknesses.
Receiving support doesn’t make one a burden. It just means this is an area where the person needs support, whatever the reason.
Just like I’d hope you wouldn’t say a parent working long hours is a burden because they rarely cook. Or that a child is burden because they need support - cooking, cleaning and emotionally. Or the new mother struggling with lack of sleep who is leaving the HW to the father.
We all need support and assistance in our life. We’re all dependent on each other. That’s being human.

And the fact burden is always associated with something unpleasant just carries the stigma that disabled people are somehow bad, unworthy and not useful to society.
You can’t at the same time be worthy in society agd bringing something and being a burden. These are two incompatible concepts.

As @RockOrAHardplace it doesn’t mean that being a carer is easy and doesn’t have its own struggles. No doubt about that.
But that’s not from the person being a burden. That’s from the huge amount of work needed with little support/rest. It’s the lack of assistance and community support. It’s not the person,

You can still have value and be part of life but you have to also be able to see that you are a burden to those who must look after you because in their absence your quality of life would decline surely?

@PlopSofa
1- there are different levels if ‘looking after’. Cooking and cleaning are very low level stuff (if you live in the same house) simply because you’d do it for yourself anyway (eg I did it all on my own for years as dh was travelling for work most of the time. It never crossed my mind to call that a burden or me being a carer)
2- what about the fact that, even though I can’t cook or clean, I still bring a lot to the relationship and improve my dh quality of life? Ever thought that maybe disabled people can enhance your life too?? Or that the split if responsibilities is simply different?
3- Whether my QoL increases or decreases has no bearing on being a burden. You can be cared for in a really unhelpful agd actually detrimental way, It’s the person helping that will find it a burden or not.
4- I have no issue personally to be thankful of the help I receive. I hope you’re expecting the same level of gratitude and acknowledgement from your DP for your contribution in the house,

And I did start by saying that I didn't like using the word burden in this context but I couldn't think of another word to explain.

But sometimes it is the person that is the burden as I explained in my examples. I sought SS assistance for them as I was struggling and my brother and Mum were offered carers but declined them as they wanted me to continue as its highly personal and they wanted me to do it. So they have chosen from their preference, not mine and it is difficult to bear (emotionally, physically and financially), that's why I approached SS in the first place. They are not thinking about my well being. I wasn't bowing out entirely, I would have still been supporting them, but some of the more practical stuff would have been done by professional carers etc.

Also in the OPs thread, her husband declined the support he was offered also. leaving her nowhere to go with it. So she is burdened with a man who has checked out, offers no emotional, physical or practical help for the family he helped create and doesn't do anything for himself....what is that but a burden because he has said he has no feelings for any of them???

I do agree with @RockOrAHardplace about their definition of burden. I cleaned and cooked for my children until they were adults and left home. My choice to have children. Nobody forced me to have them. It was my responsibility to look after them. When my husband is sick look after him. Very happy to do so. We support each other and have an equal relationship.

when my mum got old, she could no longer drive. Sold her car and said she would take taxis as she was wealthy. Did she take taxis? Never. She would emotionally blackmail me to thrive her. Not only that, but she also ‘looked after’ my disabled sibling and would get me to drive them to their appointments, shopping trips etc too. Even when I was seriously sick I was expected to turn up and care for them. Now that was the burden. The expectation of my mother’s needs and wants coming before my own.

@HelpWendy - you sound like me but a couple of stages ahead. I've felt so much comfort reading your posts.

Thank you for sharing your experiences- you sound like my STBEx. I really hope he recovers and becomes a better version of himself for his sake and the DC when he moves out.

Exactly this. I spent 5 years with a man who was autistic. His masking stopped after I became emotionally invested. He could be so funny, but his anxiety and moods made him so nasty that I could take no more. After 3 years alone I found someone else... who is also autistic. My heart is going to be broken again because, despite my previous experience, his behaviour is impossible to handle. Actually, my previous experience means I don't want to put myself through it all over again.

OP, you have the right to feel aggrieved, deceived and grief. The life you thought you had has been pulled from under you. Diagnosis or not, they know they're presenting a false impression of themselves. I can only imagine how devastated you must be feeling and hope you feel brave enough to branch out on your own. I didn't have kids with my ex, but the relief I felt to be away from him was immeasurable.

Am so sorry. How long did it take you in the second case, for you to realise?

In either of these relationships, was / is your male partner able (and willing) to see or recognise the traits that made being with them difficult on your part?

The issue I have with communication between us being a completely one way street. I say something that matters to me and it’s ignored and forgotten or deemed to be unreasonable from the start by him. He says something and expects me to take it on board completely, build my life around it, reshape my views and time to fit it, present it to the world as our shared truth and deny my truth / aspirations in order for all these things to happen. And it’s taken me over a decade to realise! I haven’t lurked on these boards long enough to know if this is a common experience of being with someone who lives with autism, and someone with autism who refuses to accept the way they communicate is problematic for the other person.

I only have experience of being with one person who is autistic. So this may just be how he is and not a situation that you or others can relate to.

But what made me reply to you is what you said about being emotionally invested.

My experience is similar but it was that once we were married I saw a very different person from the one I dated before we exchanged rings. Even though we were emotionally invested before, marriage - the all in investment - itself was the cusp.

The second case only took a couple of months, because certain common traits were there. This time I recognised them for what they were and couldn't be gaslighted. He asked nothing about me. He'd ring me, talk about himself (the same routine every day and excessively about video games), then end the call, as if I didn't exist! He wouldn't eat any light-coloured sauce, kept repeating himself, never wanted to go anywhere.

Autistic people can be very different and this one was very different to the previous one, but everything was just very odd. They have great difficulty understanding or accepting that other people have different interests, opinions and beliefs. They believe that because X is what they think, X is correct and thinking Y is either wrong or doesn't exist. They are only bothered about something if it either benefits or affects them. They have trouble putting themselves in someone else's shoes.

I can only speak from my own experience and no amount of explaining or trying to reason had an effect on him because they're hard-wired that way. Others' experiences will be very different.

This is the case for my own daughter also. It’s absolutely heartbreaking. She often asks me why can’t she be like everyone else and just fit. I discourage this behaviour. I am ND myself and I encourage her to do what she needs to do in order to feel better. There is no shame not being like everyone else. In my own experience when it’s spotted early it’s much less likely to cause such issues like the posters partner. I think that’s why posters are likening it to personality disorders. The picking and choosing of behaviours that they “think” make them fit in, not grasping the complexity of NT people. We need to teach the ND person to accept themselves and for NT people to accept that we aren’t all the same. It’s so sad when people go through life like this, not knowing and suffering, then being told it’s intentional and manipulative. It is also sad for those on the other side because it must have felt manipulative. Pain on both sides.

Is he diagnosed autistic?

Because your description of him could just as easily be someone with any cluster b personality disorder (1 in ten people). Sounds like npd, for example. People with autism can also have npd just like anyone else can too.

You talk about 'gaslighting' which is deliberate abuse. Now I'm not saying soneone with autism isn't capable of that but - it's more commonly displayed from individuals with malignant personalities as a result of say, npd.

I’ve struggled with defining this line. It’s the term deliberate. My 8 year old who’s ND will lie to my face, even if she has seen me watch the reality. It’s like she believes her view of the event. She will take something and deny it and I often believe her because she is very convincing (till I find it in her room). It would be called gaslighting but it’s not is it because she actually believes her version.

Well I mean without being in her head, it's impossible to know if she believes her in lie or not though isn't it?

Lots of narcissists convince themselves of their own lies too. It allows them to absolve themselves of any guilt. Many rewrite history for example, making their ex partner into a villain. Of course lots of them are aware and doing it deliberately, but some of them are so delusional that they actually believe they can do no wrong.

Not saying your kid is one of course, it can't even be diagnosed till 18. Though...argument is can form in early childhood (ages 2-4, often as a result of trauma). But, I mean, most kids lie. And all kids are narcissistic until they grow out of it by developing empathy.

Thank you so much for explaining your experience, most of which overlaps with mine.

As the partner of someone presenting with these kind of behaviours, the experience is clearly very different to being their parent. I speak as the parent of an ASD child, too. It doesn’t help me to know that my husband is not deliberately ignoring my POV, interests, goals, beliefs, things I have said are critically important to me over the years - because when you explain that they are doing so, how, what that feels like and still you see no change. I see no change, I mean. If he was able to empathise or try to after the fact, then it would be at least functional!

Are there good organisations that offer help groups and other types of support to spouses and long time partners who are contending with these exceptionally co-dependent dynamics, does anyone know?

And how do you ensure that your own ASD child doesn’t visit the quasi-controlling behaviour of her/his own dad on people he has significant relationships with, in due course, so that s/he can show and experience a bit more give and take? What can one do while the brain is most permeable to assist them to learn more social skills and more interest in eg. listening, apologising, taking on board opposing views etc?

Yes, his father has ASD, as does his son

@jubs15 @NeedsMustNet

This is factually incorrect!! Autistic people can feel empathy and can care when told a partner feels neglected or whatever the partner communicates. I'm autistic and feel deep deep empathy it's actually crippling at times. I'm constantly checking myself to make sure I give space in conversation and asking questions about the other person, remember what they say and ask about that again in a few days time. It's not natural to me but I absolutely can do it when I know a partner needs that. It's not that I don't care it's that I can't understand what this NT obsession is with needing to be asked about yourself- if I want to talk to a partner I would just talk- if I needed support or felt unloved I'd just tell them. To me the NT way is the mind games, getting offended because you don't want to have to speak up and expect to be asked. BUT I understand that to a NT partner asking about them and giving huge pauses to give them a chance to speak is how they feel I care. So I do it. And I can do it. It takes effort to remember but can absolutely be done. I once set a reminder on my phone to ask an ex how his day at work was because he said I never asked and didn't seem to care he had a bad day. I adapted. He refused to adapt in return and just fucking tell me he had a bad day but it was no great cost to me to set the reminder and concisely monitor is face and body when he gets home to determine is mood and if he needed support.

It's not that we don't care it's that we work differently. like that example of the phone call just talking about himself then hanging up. He probably expects you to interject and carve out the space. You should see me conversing with some of my autistic friends and family we just start talking over each other amd the other gives way and either circles back if they hadn't finished that part of the conversation or it moves on. It's very different to NT conversation. It's always this expectation that the autistic person should change how they communicate not the NT person. And this horrible myth that because we don't naturally prompt others participation we don't care. For me being prompted like that can feel very invasive, if I wanted to talk about my weekend or my sick parent I would 🤷‍♀️.

It's called masking. When you force yourself to adapt to the NT ways of doing these things. And it costs us emotional energy. It exhausting running through checklist ls in my head constantly to make sure I'm meeting NT social requirements. I can and do do it. I work and socialise with NTs. It would be nice not to have to mask constantly for a partner but generally remembering to ask how their day was or if the sick relative is any better doesn't cost much. If your partner is functioning and working and living an independent life out of supported accommodation then they can mask for an extra few minutes or half an hour to please a partner. I think of it like the love language acts of service. I feel loved when a partner unloads the dishwasher they feel loved when I vocalise my interest in them and their thoughts and feelings. And actually if you live someone you do want to know these things and would be getting upset your partner never shared which would trigger you to remember NT people like to be asked and prompted.

I read descriptions of autistic people and they are being called unempathetic or uncaring and selfish. Whatever variation on that. And it can seem that way if the autistic person doesn't understand the differences in NT/ASD communication. But once told they can make the effort for their partners if they care (and if the partners give a little in return). Most often these descriptions are just of selfish men who happen to be autistic. You can be both. Just like you can be autistic and narcissistic or autistic with a personality disorder. It's not fair to say all autistic people are like this and quite frankly it's offensive

Please show me where either of us whose posts you mention has said that all autistic people are one way or another. Or that all the autistic people we are talking about are representing all autistic people.
I have only asked the other poster about her experiences with her own two partners who are ASD.
My experience of having a child with ASD (who also happens to have ADHD) and a husband with it are completely different.
It’s OK for partners of people with ASD to ask one another for advice and support, just as it is for you to ask fellow friends with ASD how they navigate life with NT partners or friends. We all need support.

At what point does an ASD person who you find it hard to understand / communicate with become a horrible person who happens to have ASD? How would we as their partners know? I don’t think - for myself - that it’s a helpful way to look at relationship challenges I’m experiencing or a constructive way for me to achieve my wishes to support my son with communication and verbal / facial cues etc. If you find that category helpful, I hope that works well for you.

NT or ND, we all have our own unique non-standard ways of behaving and thinking. But that doesn’t stop there being certain shared characteristics that some people in long term relationships with ASD diagnosed partners observe and need help to understand and identify.

I can see that you feel judged by us and if it’s helpful for you to think that we are writing about horrible people who happen to have ASD as opposed to just people who have ASD, please be my guest. I am sorry.

My ex used to set alarms to prompt him to interact with me.

Needsmust, if you didn’t keep reminding yourself to ask about others or give them space to talk, what would happen? Would it just not occur to you to ask?

@NeedsMustNet sorry I shouldn't have gone off on a rant.

There have been multiple threads recently on education and Sen in school. Lots of comments about permissive parenting and others arguing the kid is ND so not their fault. It winds me up. ND kids need different support not no boundaries. The lack of support and understanding is leading to a generation of kids not learning essential skills because they learn them differently. Some come out traumatised others come out aresholes who use the diagnosis to justify shitty behaviour. Noone is benefiting.

There are of course different levels of autism and we all have different struggles within it. My rant is more about those who are late diagnosed or ' high functioning'. If an autistic person genuinely can't grasp that their partner has feeling and needs something from them then that level of difference would have been obvious as a child and they wouldn't get to teens or adulthood undiagnosed or without others interacting with them being able to immediately tell this person is different. They may be misdiagnosed but the difference will not have been missed. I think if someone was able to show interest in the wooing stage of a relationship and make that person feel loved enough to want to be with them then they have the ability to continue doing it for the person they love. If that drifts off then it's because they don't care about the person they are with enough not because they are autistic. Saying that could possibly offend those on this thread with partner making them feel this way. I think that's why I'm ranting. It's a lot of effort to meet a NT emotional needs and it can't really be done without discussion and checking you are both understanding the other and meeting their needs. It's cost me alot and I get set off when I see descriptions of what to me reads as a person not making the effort and it's being attributed to autism. I'm not saying they will just be able to do it or do it the right way but they will clearly be trying and with a supporting partner explaining what they need and how it feels from their side even if we get it wrong it's obvious we are trying and we care. If you have explained how you feel and they don't even seem to try that's because they don't want to not because they can't.

You do eventually ask if they haven't voluntarily given you the information. We don't ask because we naturally would just share about ourselves rather than need prompting. But if you care about a person then you actually do want to know these things so if they never tell you because you never ask you would start to feel unloved yourself. Then you either ask or you get upset they don't include you in their life. That could lead to a discussion and improved communication or the end of the relationship. Or I guess some people would just suffer on both feeling unloved because neither understands how the other communicates.

@NeedsMustNet

I should add kids are different. Some will learn the skills and some won't. Just because an autistic kid seems not to care that doesn't mean they don't or won't ever be able to communicate in a way NT people get.

For facial cues there are loads of games you can get and other resources that teach facial expressions within a game. I'd suggest looking into some of those. When you describe the emotion describe it don't just name it. Start aim and get more complicated. Many of us can't even name our own emotions as children we just feel good or bad. That's were you get anxiety coming out as anger etc (don't think this is exclusive to autism). You need to teach what the emotion it called how it looks on a face (the board games and books can facilitate this). But also how it feel in your body. Excited and anxious can both be felt in the stomach for example and some kids can't differentiate between them and if not taught as kids that continues into adulthood. What would cause someone to feel this emotion and what emotions are similar but how do they differ. Then importantly how do you manage that emotion appropriately, does it even need management or should you actually sit and feel this one? How should you respond to the emotion in others. Key phrases that would be nice for the other person to hear. I seriously struggled with grief and loss it's not appropriate to say that's shit glad I don't feel that way I'd be uncomfortable. Particularly for girls how should they react to the anger of others they are not there to be treated badly. Basically play some simple games and read some books then talk talk talk. Also be aware that lots of these resources to help learn this stuff use cartoon faces- initially it does need to be that simple like when you start reading you get easy fonts not swirly old fashioned calligraphy. But you need to extend it once they get the cartoon faces because real people have real faces and they are soooo varied and different and real emotions are incredibly subtle compared to the cartoons. For my son once he masters the cartoon version of the game I googled and printed real faces with the emotions and stuck them on the cards. Then I point out the faces of people in films and photos we come across and name the emotions. I ask my boy how do you think that person felt when that happened can we work it out by their face? I also was regularly telling him "stop look at sister/friend/etc face they don't like what you are doing" because he really wanted to make friends and play but got too close and couldn't read their discomfort.

Learning faced is a massive task for some autistics. Others do find it easier. Even if they are slow to read expression it's important to teach emotions in themselves and in others and how they interact. This stuff is natural to NT people but we have to work it out for ourselves with trial and error. A helpful parent explaining it can be hugely beneficial!

You may also want to consider teaching you child to ask people what their face is saying. However this highlights their difference and if they can't judge when which a question would be appropriate then don't do it. My kid has send education so it's not weird for him to ask but if he were in mainstream I wouldn't be telling him to ask peers what their face means.

And you probably know not to tell him to make eye contact. Forcing it feels incredibly uncomfortable for many of us and I find personally being aware it's needed makes it even weirder. Some autistic kiddos will need to be told that the speaker needs to know you are listening so make a verbal acknowledgment or stop fidgeting or stop what you are doing to make it obvious you are paying attention if you don't feel able to at least look in their general direction.

@TheyCantBurnUsAll I just wanted to say that NT people aren’t “obsessed” about asking each other how they feel all the time. It’s how they communicate. I think respect on both sides is needed. I am also ND, these threads gets so heated at times, it’s really hard adapting communication styles but it’s not a fault on either side. I do know that NT people also get really anxious not knowing how to communicate with there ND partners so I think there is anxiety all round really.