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.

Just to add to my post, 2 things

1. Mt life is FAR from what I imagined, and for my kids. I have had to work very hard to make peace with this, to ease the guilt and self doubt which lets me (hopefully I’m not fully there yet at all) look to the future and rid myself of the hopelessness I’ve been wearing for years.
2. i am irrevocably a different person, have no endured such a mind f&ck, I was utterly on my own, and baecause of expert masking to the outside, I really had to have faith in my truth as no one else knew or really at the end of the day was ever going to care about my kids and me as much as me. Leaving went against every bone in my body. I am a very different version of myself, and I have emotional bruises and my frame of reference on life is somewhat twisted. On good days I see this as my strength and substance and know ultimately down the road I will be proud of myself. We will always look out for eachother with genuine care however the split was unavoidable, alternative was a dead life. I am trying to motivate myself to get to know myself again and find a new hopeful and more animated frame of reference on the world and life and leave behind the flat 2D version I became very accustomed with over the years. I was mostly angry with myself for missing the flags, but hey this is my story, this is who I am now and this is Day 0. I hope you get to your Day 0 SOON.
3. like a previous poster said, don’t worry too much he will find his feet when he has to, he also may well be relieved, you just cannot predict outcomes.
4. after a while you will realise the insane bandwidth this is taking up in your body and mind.

Wishing you an artic truck load of self belief and resilience and you’ll be chatting and smiling again soon xx

I have oodles of practical, lived experience in comparison to you.

Wow. You know nothing about me!

I'm not coming back to this thread after this post because my presence here is not helping the op.

But RockOrAHardplace you have just done what you have accused me of doing and assumed that I am not on my knees, assumed that I don't have other family members with autism that I am supporting financially, practically and emotionally, and assumed that I am not old and tired. Because I do all of those things and I am all of those things and yet I still choose to advocate for the person with autism on this thread because no one else is standing up for the person with the disability and yes I use that word advisedly.

However shit our lives are, it still isn't as bad as the person dealing with ASD every day. You have the choice to walk away. They don't.

If you think that your brother can turn his symptoms on and off at will to suit himself then he doesn't have ASD.

I'm autistic and I wouldn't want to date anyone with Autusm (dd is autistic that's difficult enough).

I suspect DH has adhd though.

And now you are putting words in my mouth I never said. You accused me of having no understanding of autism and I demonstrated why I do. If you have a daughter at Uni, you are a lot younger than me, so I have been dealing with my issues for longer.

And you have experience of your daughter, I have experience of my brother, two totally different people and presentations.

What you are not getting here, is that this post is not about Autism per say but about the OP and the issues in her marriage due to the changes in her husband and how it affects her family and her. Its about the problems for carers. I am sympathising because I just get cut dead by people like you who fail to appreciate how difficult it is for us. And as you have a daughter with Autism, you should appreciate this.

I am no less important than my brother, I have fought for his right to have a life and in doing so have lost mine. I did not birth him, he is not my child, he is my older brother. Who looks after me with my health issues? Do I not deserve some of your compassion, do I not deserve time with my family. should my family not appreciate the strain it puts on me and allow me a break, or am I just a disposable commodity.

This OPs post, is not and never has been about Autism bashing, we know and understand the issues but when they have given up and our life is intolerable because of it, its not fair.

And if you have also taken to read everything I have written, you will also note I am married to someone on the autistic spectrum and he is the love of my life so I am far from Autism bashing.

Your daughter has nothing to fear if she keeps trying but I can't do it for my brother if he won't do stuff for himself. Who moves 200 miles away from their carer and still reasonably expects them to support them? Why should I fund that, let alone the time off work and away from my family?

“However shit our lives are, it still isn't as bad as the person dealing with ASD every day. You have the choice to walk away. They don't.”

Thats just unfair. It says that an autistic persons needs trumps anyone else’s, every time.

What do you say to someone like me who had felt suicidal at times, such is the stress I have experienced on occasions living with a whole family of autism, other than me? I have really really struggled over the years.

It’s ok for me to die, as long as the autistic persons needs have been met because it’s always harder for them? You have no idea what you are talking about.

Your standards are biased and unfair and fail miserably to include why one other than yourself. The selfishness is off the scale.

@Howmanyshoeboxesdoesittake that message above is for you.

@PlopSofa

Autism is obviously a touchy subject for you. Best not to click on threads with autism in the title.

Seeing as I live with it 24/7, it’s hardly something I can avoid is it?

I see in the OP how her health had deteriorated, how this relationship has been to her detriment. I am happy to share my experiences with her and support her because I have suffered so much. But it’s ok because I’m NT. My health, like hers can he sacrificed for others who are clearly ALWAYS more in need.

I get told the same, but can't you see that it's true that us autistic people are a burden sometimes? For example most of the time I can't clean after myself, now I solve that by paying a cleaner but not everyone can afford that. So if someone can't clean because of their autism and a person they live with is always cleaning up after them, is that not being a burden?

This thread has really pissed me off. Poor op dealing with all that and having to defend herself, encouraged to endlessly orbit someone who has openly said he doesn’t give a shit. That’s not a marriage, it’s a full time job with no pay and a tyrant for a boss. The other word for that is a slave.

LittleCatToesMakeMeSmile

Can you see that what motivates an adult autistic man might be very different to what motivates a young girl?

If anyone on here has taken offence that's tough....OPi s talking about her relationship not you personally.

He'll have to go and live with his parents OP.

Put you and your children first for once.

But that doesn't just apply to people with autism, it isn't an issue specific to autism, any one with age related frailties, disabilities (visible or not) , MH issues or any young parents needing help with kids, can sometimes be a burden. But a burden most people are happy to help with.

But what happens when you are the carer and you are ill, and no-one (a) looks after you (b) helps take the pressure off you by taking care of the person you normally look after? I get told I need to pull myself together, try harder of get a less demanding job!

If you are paying for a cleaner, you are tying to manage it yourself and take the pressure off the person that supports you, you are making an effort and are helping. But what happens when the person you care for.....and this quite often happens with frail elderly people, needs too much help/ support for what you can give. SS get involved and offer support and the elderly person declines it, as they would rather their sister/daughter etc did it. But said sister/daughter is on her knees and she can't force them to take the help, she has no say in the matter. So what happens when she buckles and not only can she no longer be a carer, but she now needs someone to look after her home and kids...who looks after them??

The OP's husband has refused help and leaves the OP handling everything, absolving himself from any responsibility to the family that he helped create. It doesn't matter what creates this situation, whether its his autism or a personality traits...what does matter is the impact it has on the OP and family. They deserve consideration too.

This is not just about Autusm, its about a man who has checked out of his relationship, who happens to have autism and expects everyone, but him, to make an effort for his well being.

Given everything you've said, I wonder if he'd be happier and better off away from family?

If he's incapable of feeling, doing and being what's needed as the husband and family man, perhaps taking the pressure off and letting him be the solo with only himself to please could be beneficial all round?

Please tell your parents. Tell them everything.

Brace yourself for 'we told you so'.

It's probably for the best that they own your home - no problem there for yourself and your children.

Despite your low income you may be liable for some kind of financial support for him, although being the only parent able to care for and support your children might be relevant.

How old are your children?

See a solicitor and find out your rights.

When you have told him, speak to his parents. No more secrecy. And make sure you're safe.

There are no awards at the finish line for women who sacrifice their happiness for men. He's told you he doesn't love you, so there is no reason to stay.

Just a reminder, it is possible to be both autistic and an asshole of a person, the two are not mutually exclusive, so I'm not sure why some posters are assuming all of this man's negative traits are down to his autism.

@RockOrAHardplace You can only give others what you have the capacity to give without burning yourself out. You need to work out what that is and make it a hard limit. Don't set yourself on fire to keep others warm. Who is going to look after you and your children if you burn out? Who is going to pay your bills if you can't work? And you wouldn't be able to look after your brother and your mother then anyway. Ignore the emotional blackmail about getting a less stressful job and put yourself first.

OP, walk away for the sake of yourself and your child.

Other people matter too. RockOrAHardplace and the OP matter as much as their loved ones with autism. You cannot give infinitely without burning yourself out, and if you do, then you need support yourself.

Help has been offered by you and professionals. He has refused it. He has refused help for his family. You can do nothing more. On universal credit with a good and higher PIP he will be eligible for housing benefits and council tax benefits. You must protect yourself and the children. Leave.

To be harsh - not your problem

He has a team helping him- who do you have?

You need to split for you and your children.

Please look into what it would involve.

Make this the year you're happy

But this thread is not about your daughter

I know this is true, but thanks for saying it. Sadly my family never see it from my perspective because its all about them, everyones attention is focused on their needs and their struggles and my perceived short comings in not being Wonder Woman.

And this is the thing, no-one is attempting to minimise the issues that people diagnosed with Autism or anyone else with a mental or physical disability or frailty have, but a by product of that is the families are also affected, like the OPs.

I had to change my working week to working 40hrs over 4 days so I have the time I needed to run around like a blue arsed fly to care for the people in my life. I wasn't entitled to any benefit to cover the costs because I didn't spend enough time caring for one person, it was spread over three people.

When those that need support, try to help themselves and work with you, its doable on the whole. Everyone has a blip and gets depressed and may give up for a while but then the kick back in and things are OK again because there is genuine love and affection to drive it forward and a hope for something better for all parties.

The OP has a husband who does not want to help himself, or his family or make the best life he can for his kids. He has checked out, he is content to be looked after and is offered that he has no feeling for anyone - that is a hard pill for the OP to swallow, there is nothing in the relationship for her or her kids. The man she fell in love with, and thought loved her back, no longer exists. This is not Autism bashing, its the death of a relationship and the OP needs to grieve and move on.

I love my family, but the lack of consideration for my wellbeing is not acceptable and I am walking away not to punish them and prove a point about how much they need me, but because I have learnt my lesson that they are not going to change and I can no longer exist like this. My actions may make them re-access their priorities and start working together.

I think the OP is in the same place with her husband. He makes no effort and she needs to walk away. It may actually help him to be motivated to improve his lot but either way he will no longer be able to drag his family down because he has given up and because there is no love in the relationship.

And for everyone like you, that acknowledges this, there are 10 people who don't see me and my struggles, they just see the 3 people that I am "abandoning" and I am a hard faced bitch...."I could never do that to my mum/brother" etc. Its the first thing out of everyone's mouth. It gets made into something it isn't and people don't listen. There have been a couple of posters on this thread doing just that. Its very demoralising.

That's really rude and uncalled for. She basically said she hope's in 30/40 years people will be more understanding. This thread has a lot on about autistic people in general and their own experiences. That poster very briefly mentioned her daughter 🙄

OP I'm really glad you are being supported by most people on this thread. You don't exist as a support animal for your husband. Go and be free and live your life. You've gone above and beyond already.

I can’t clean and I can’t cook for myself.
Im refusing to see myself as a burden.
I’m a person who has lost some of her abilities. But I’m still me. I still bring something to my family and society.

If you want to see yourself as a burden because you’re disabled, that’s fine. You do you 🤷‍♀️🤷‍♀️
But I’d appreciate if you could avoid ableist language like this,

@MyNewLife2025

Can I ask what if everyone was autistic and unable to clean? Or feed themselves? What then? Would you all not be a burden to each other? How would everyone function without help?

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?

Disabled people require care and help. That’s fine but don’t pretend that someone is not providing time and energy to assist you in a quality of life that would not be available to you without them being there.

Whether you classify this as a ‘burden’ or not, someone else is giving up time and energy to ensure you have a better quality of life than if they weren’t there.

I do appreciate people who appreciate others that give up their time and energy to help. Whether it’s family or friends or paid for help, gratitude and acknowledgement of what is given is always welcome.

She said she could write 10 pages she was so upset and was pretty huffy and self righteous I thought.

I have an autistic DD but I’m far more realistic about life and what to expect. It’s going to be shit (it has often been shit to date) but I will teach DD to roll with the punches as best we can. And we will remain as optimistic and positive as we can.