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.

If your parents can be there as reinforcements and safety, that could be a support to you. Report any behaviours to the police if needed

It was a lie. He knew his behaviours had been perceived as 'difficult' so he covered them up. I'm not being ableist, I have ADHD myself so I know all about masking and behaving differently for different groups, but my XP lied about his behaviours by covering them up or deliberately keeping himself from exhibiting them, therefore I was in a relationship with a man who was not who he presented himself to be.

I may book a weekend with your DP and leave a handwritten letter from you, plus the solicitor’s letter initiating divorce.

you can say you’re sorry you had to do it this way rather than face to face but you’re too worn out to discuss things and just want to move forward on your own.

Of course he will probably be obstructive but further solicitor letters will grind him down and will eventually force him out.

You can be quite upfront about the fact you will go all the way for a full divorce as this is only path now that you are interested in.

Outline the options for him in the letter, parents, council flat, possibly job with private flat rental.

The solicitor will advise you about what your financial exposure to him is.

It may be you need to support him financially for a year or so while he finds his feet as part of the legal terms. As he will have no dependents this may not apply. I’m not certain, I’m not a solicitor so it’s imperative you get advice.

Ditto. Whether autistics are aware they are treating you like their special interest for the first 6 months and this allowed them to come across as normal, or it’s a mask, either way, the effect on the NT is devastating. You feel like you’ve been ditched in your relationship yet…. you’re still in it but they’re not the same person after all year or so.

I’ve spent 20 years waiting for that man I first met to come back.

I would hardly be able to support myself let alone him, I only earn minimum wage , £1500 a month. This only covers bills and food in our home, I couldn't give him money aswell.
I do think he could go back to work in some respects now. He just doesn't want to and of course feels he doesn't need to at the moment even though our finances are down 75%

Many autistic people are not capable of deliberate deception. If anything they are too honest. Lying can be too complicated s social construction to understand.

Op, I have autism and I am unable to work. I get UC with LWCRA component, which means I am unable to work and I am not required to search for work in order to receive UC. Your husband can apply for that, the assesment for LWCRA is over the phone and they ask things like are you able to feed yourself, leave the house etc. He will probably be rewarded based on everything you told us on this thread.

This can cover rent of a studio or a one-bedroom flat, you just might have to give him money for a deposit.

Other option is tell the council he will be homeless from a certain date and they have to place him somewhere.

Don't stay in the marriage just because you think he has nowhere to go, there are options. Good luck.

He's qualified for high rate pip without them even seeing him. He has 18 months of that left and I would presume it will just renew as his psychiatrist will give them a report to say he hasn't changed .
I had to do all his applications for him tho, I've always done everything.
Hopefully can get him set up with something else, I'll look into the LWCRA

You won't have to support him as well, and I would be wary of getting too involved in solving the problem of where he will go - obviously, he is going to say you are cruel and heartless for ending things, and he is going to say he can't leave as he has nowhere to go - that's why this has gone on this long.

From what you've said, it sounds like if you let him stay until you've found him somewhere just as nice as home to stay, he'll never leave.

You say he won't want to go to his parents' - well obviously he won't want to move out, but what he wants cannot be your priority to the detriment of your own and DCs' wellbeing.

Obviously you still care about what happens to him, but it's probably best to keep that to yourself for the moment as it sounds like he's going to use any weakness against you to manipulate you into letting him stay otherwise. I would get ready to be called a heartless bitch, and just keep telling yourself that you have to act like one to get him out. Otherwise you'll be stuck like this for another 40 years.

And your response is what I always get. I understand all of this but I can’t cope with people like you constantly putting my needs behind everyone else.

I have done NOTHING but help him and my mum but when I am struggling and speak up, people like you shut me down in this way. He can’t help it, I am fully aware but I didn’t expect to get completely sidelined by my family, my needs ignored and yet along with my own family responsibility, dealing with the care of my elderly mum and my ever demanding brother - where do people like you take time to consider me! I am sick to death of people criticising.

However what you need to understand is my brother blames EVERYTHING on his autism but doesn’t try to improve his lot, leaving me to deal with the consequences.

So the OP is in a similar position, does she and her kids have to live a life of misery. No one is saying he can help it but all the things she married him for, no longer exist - should she and her kids live a life of misery?

I wish my mum was half as protective of me as you are with your dd but she isn’t!

And my brother wasn’t invited to the meal I cited in my example purely as he doesn’t do family meals , he invited himself. We were then kept waiting for hours, she should have fed us and kept his warm but no!

Just because someone moans about their caring responsibilities, it doesn’t mean they don’t understand or care for the person, it means they are struggling and need support and someone to listen and occasionally prioritise their needs. And it’s people like YOU with your condescending take that knocks us onto our knees and seek a way out.

I feel your are very insensitive to the toll being a carer takes on someone!

He is retired now and doesn't have to take calls all week, its not my calls he ignores, I never ring I text. My Mum cannot text so she rings and its her calls that he ignores. The she rings me as she is worried and upset and I text and he still ignores us both. He has demand avoidance as i have already explained - as in I DO understand autism, it runs in my family but it doesn't make it any easier to cope with.

Unless you're intending to continue being his carer/DWP appointee, etc, IME it would probably help him more to let him do this himself or to ask one of the professionals involved to support him in approaching adult social services and/or citizens advice for help with benefits.

IME, if the council know that family is on hand to support him with this stuff (and communication support, medical appointments, etc), they likely won't see him as a priority for urgent support, as they know you will ultimately pick up the slack (and there are other people who don't have any family help). So you could end up still trapped if you continue to manage his affairs until he has someone else to do it, as no agency will be obliged to step in or to view it as a safeguarding issue to leave him to his own devices if you're still supporting him.

The LCWRA process can take ages, and even once that's approved, it's a similar situation whereby your income will be taken into account while you are still living together.

I know you feel guilty and want to set him up on his own, but I think doing too much will keep you tied into the responsibilities you're already shouldering. He won't be able to get set up financially while he's still living with you as you can't apply for benefits/social care support for a future situation that doesn't yet exist.

@Itsallmakingsense youve clearly become his carer. And he clearly is loving that. Not saying that in a negative way. But it has removed a huge burden from his shoulders, the things he has struggled to cope with before and that’s you’ve taken away from him. And yes I include all the forms filling and work.

I get that you want to be fair to him.
I think to do that, you need to start with being fair to yourself and your dcs.
You need to protect yourself, ESPECIALLY if he has a ‘mean streak’. Because telling him you want to separate and that it means he has to move out isn’t going to go down well.
And yes I’m sure you could help with UC and the forms but you need to remember he might well use your wish to still help and support to get to you.

Having said that I’d contact the autism services and the family support. I’d explain the situation and see if they can help him re getting some accommodation in place.
He should still be able to rent a 1 bed flat with UC, LWCRA and the housing component of UC.

Also what @LonginesPrime said.

I'm not a health professional just the parent of a child with autism, but that at sounds like love bombing and some sort of personality disorder if you ask me, rather than typical autistic traits.

She doesn't have to be responsible for his affairs, all she has to do is divorce him and write a letter saying he will be homeless from x date. If he's not gone by that date, she call the police. It's cruel but might be necessary.

I am sure it is hellish to deal with, just as it would be if your db had a paralysing stroke that affected his mental and physical state; the difference being that the sufferer doesn't get blamed like it's some sort of personal failing.

If your db is demand avoidant then it would be a good idea to change the way you interact with him and stop hoping that he is someone different. I'm sorry if that sounds harsh but I say this for your own peace of mind as well as your mother's.

You need to look after yourself and the kids now. You married the man because of love and a desire to spend the rest of your lives looking after each other. He masked his true self, he didn't understand why and it wasn't intentional deceit and if it helps, I do think they feel love but they don't demonstrate it or empathise in the way neuro typical people do and that is the part that for the likes of us is difficult.

That said, he has told you he has no feelings for anyone, which I assume includes you and the kids, he is antisocial and expects you to do everything. The kids are struggling and are being adversely affected by it, so you have to ask what there is in this relationship for you and your kids.....and the answer is nothing except guilt. And guilt at what will happen to them is not enough to sustain the relationship or give your kids the upbringing they deserve.

He will get other benefits to go with his PIP if he is no longer with you. He might not want to go to his parents but he may have no choice and that isn't your problem.

My autistic brother was a professional, he too could stand up and do presentations, meet and greet clients, may compliments to them and negotiate in a rational manner. The problem for him lay in anyone that had some type of emotional connection for him. Couldn't come to my wedding - too many people, Couldn't come to the family Christmas meal - doesn't do socialising and doesn't do birthdays or Christmas. Not know him to send his Mum a card or a present for Christmas, Birthdays or Mothers day. That's because its all about sentiment and he doesn't see the need for it - he is just differently wired. Really elderly and isolated Mum, he is retired and he never gives her any consideration, or me....its all about his needs. Yet when he worked and was meeting a client, he would offer to take them out for say lunch and ask what type of food they prefer. With us, if he ever agrees to come out with us, it has to be Indian, which my Mum cannot eat and he always gets his way.

He can therefore rationalise the niceties of society for the benefit of his business but does not apply those same needs/niceties to his family. If he truly understood our needs and that relationships are reciprocal, he would try....he does not. And its this lack of any acceptance or accountability that kills it for me.

My husbands niece is autistic and she tries, she has counselling, she pushes herself to understand what other people need and because she does try, when the occasion arises where she can't cope with what is going on around her and has to put her headphones on and leave the group, we all fully support and understand. We actively consider her needs when we do things and when we married, I took care to ask her to be my bridesmaid, even though I knew she would not do it and I made sure she knew she didn't need to feel guilty if she didn't want to do it. I wanted her to know she was special to me. She declined. She came to my wedding with her headphones in her bag and when it got too much for her....off she went and I was just pleased she felt able to stay as long as she could.

My brother does not admit to his diagnosis voluntarily....he only whips out a card that says he is autistic when he gets himself into trouble and this card, he believes absolves him of any responsibility.

They need to help you to help them, and when they won't...its time to take a break!

This happened to me. My exh admitted he masked in order to get married. He said he studied and learnt how to act and what to say. I believe what you’re saying about the sociopathic concerns because my ex husband said exactly the same things to me. And he meant them. People with autism aren’t immune from developing severe mh problems.

I put up with too much for too long. The entire family orbited around his needs and wants. I took too long to separate because I felt guilty and had real concerns he wouldn’t be able to look after himself. Ongoing support from a psychiatrist and mh teams made no difference as he refused to engage after a while preferring to stay in bed all day.

I needn’t have been concerned about separating. After a short time he met someone else and is now pretending to be the life and soul of the party. Despite meltdowns about having anyone over he now has regular get togethers at his house with his girlfriend and her family. Holidays and days out. He’s working again. Going to football matches despite the fact he hates it.

But it’s an act. She’s his special interest. I feel very sorry for his girlfriend who thinks she’s met someone wonderful. I don’t doubt he will drop his mask when he feels secure enough to do so.

And yet again you are dismissing my feelings and intellect. I do understand Autism and I do understand demand avoidance. I understand autistic burnout...do you understand carers burnout?

When someone has a stroke that affects their mental and physical health, they generally follow the medical advice as they want to feel better, I know this as I have personally been there. Had my bum wiped, drool sucked from my mouth etc. In my head, I knew my limitations but I wanted to be better than I was. I needed others help to be the best I could be, I had to do things I found difficult but I had responsibilities and I had to try for them, as much as me.

My brother makes no efforts, he does not accept the diagnosis unless it suits him. The OP has the same issue, they absolve themselves of any responsibility. My brother will not go to support groups or counselling, he stonewalls me if I try to explain things, practical things. He disrupts me caring for our mother, which causes issues for me and Mum, but he does not perceive that to be his problem. Yet when he worked, he always checked with clients when it was convenient to call, yet cannot apply that to us. And that is becasue he is demand avoidant.

I on the other hand have gone to support groups, counselling, self help groups and have attended no end of autism training and suffer led groups and I say sufferer because being autistic is not easy, its not a choice. But not trying to help yourself is a choice.

Yet whenever I struggle, I get no sympathy or support, I get told I need to understand it is difficult for them....well news flash...I have known and accepted and accommodated that fact for over 60 years, he is not my child yet I have loved and supported him. But when I speak up and say its too much and do not expect to be talked to like a child who needs to be educated...I have lived an breathed this, I know he can no more be blamed for his diagnosis than I can for having red hair. Its how we deal with the things life throws at us that is the issue.

The OP is obviously at her wits end, she has given her all to a man she married and loved and is now hit by a wall of nothing from him. At what point do people like her and me, put ourselves first without being told we need to rethink how we are addressing it and we are getting it wrong?

When someone who is a carer is struggling, don't just shut them down, by automatically assuming they need to do better. If I hit the deck because I can no longer cope, not only will my brother and Mum suffer but also my husband, kids etc. So when someone speaks up like me and the OP, we are not doing it to pass time, we are desperate and on our knees, we need support and a bit of TLC and not an automatic assumption that we are doing it all wrong. We all have limits.

If the OP crashes and burns, what about her kids and isn't she entitled to some joy in life too? Aren't I?

Thank you for being so measured. O think it's really useful for me to remember that my emotional distress, hopelessness & fear for the future is due to the condition, not my children. Thanks for the reminder. However, what i was trying to say is that in that moment the logical brain doesn't realise that, it reacts with sadness/ upset/ emotion in your mind towards the person. The OP has been experiencing this for years without ever knowing about the autism. That's tough.

I'm not offended by people saying the masking is manipulative or cruel, as I know myself that's how it can come across, and it FEELS like that. It would have felt like that for the OP her entire life until the diagnosis.

I teach & work with many ND pupils, so see a whole gamut of behaviours. The other pupils are definitely more understanding as the years go on, but unfortunately many, many parents of the ND pupils think the entire world should change all the time, & that's not possible.

Edited to say; don't apologise for using whatever term you want. I get a bit irritated by the autism mafia online who get offended about everything. It's understanding that's needed, not division.

I hear you. I was in your shoes with an autistic sibling and a mother who behaved in the same way.

Thank you, that means a lot. Every time I try to speak out, I basically get told i am doing it all wrong and I need to do better. Its just so demoralising.

I'm going to shut up now as I am in danger of hijacking the OPs post.

OP I just want you to know that I understand what you are feeling and unlike me, you are not a blood relative and you can choose your friends and lovers! You need to do what is best for you and your kids now. Big hugs, it will be a rough ride but the outcome will be so worth it.

I would have thought that It is possible to be autistic and have other interesting personality traits too!

I don’t know if there is a gender impact on the way autistic people present but please know that not being able to feel or express love or not being sensitive to others feelings isn’t something that all autistic people experience. The view of autistic people as unsociable, unfeeling hermits with extreme interests is incredibly dated and largely based on a, now heavily scrutinised, study of young, white boys. It was a very stereotypical study focused on autistic people’s challenges with no recognition of the different strengths many autistic people also have.

All this to say, we can be extremely loving and extremely sensitive to others feelings. I don’t have enough experience to fully say that this is affected by the sex you are but, as with everything in life, I imagine the social conditioning that girls go through makes a difference… Regardless, you deserve to feel loved. And actually, being unhappy is a legitimate reason to leave. Anyone can leave at any time and even without everything law you’ve been through, that would be enough. Now add in the extremely traumatic experience you’ve been through, you have more than enough to say that for your own health, this has to be it.

It sounds like your life has been consumed by your husbands challenges and your own have been severely neglected. That needs to change! You deserve to be happy and to start the process of rebuilding your own life.