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Relationships

Mumsnet has not checked the qualifications of anyone posting here. If you need help urgently or expert advice, please see our domestic violence webguide and/or relationships webguide. Many Mumsnetters experiencing domestic abuse have found this thread helpful: Listen up, everybody

Husband late diagnosis of autism-i cant cope with it

256 replies

Itsallmakingsense · 03/01/2025 11:38

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.

OP posts:
Anewuser · 03/01/2025 12:17

It doesn’t matter whether he masked or lied. He turned out not to be the man she thought he was.

No one can tell you to stay or leave, only you can make that choice. You only need to think can I do this for the rest of my life?

I’m in a similar place. Met and married an outgoing man very quickly. He worked hard and we went on to have a couple of children.

He would always be ‘busy’ at weekends so I got used to taking the children out by myself. He initially came on holidays with us, then would have to work so I would take them by myself.

Our youngest is severely disabled so he gave up his job to become the full time carer. What a wonderful man, he appeared.

5 years ago, he was diagnosed with autism. So he had the perfect excuse to remain indoors indefinitely.

I work full time just so I have a life.

I can’t leave as I couldn’t leave my son. He’ll always live at home.

I’ve accepted this is my life until I die.

Please don’t be me.

honeylulu · 03/01/2025 12:19

The autism is one thing but you can park that for now.

The massive thing that stood out of your post is that he doesn't love you and never has, he doesn't love his children either. He has quite openly said so. It doesn't bother him; he has no intention of exploring his feelings and improving on that. That is not a marriage. That is not family life.

It suits him to stay married with you providing the home and doing the chores and paying the bills while he sits in his bubble of isolation. He doesn't care one jot that it doesn't suit you. He laughs in your face. Your feelings and opinions do not even register. (I stress that NOT all autistic people are like this. I would put money on my Dad getting an autism diagnosis and while he is very set in his ways and socially odd, he truly loves my mum - I'm not sure she'd put up with him otherwise!)

You really should divorce him, for your sake and the children's. He may have nowhere to go right now and it won't be easy but you have to take action or you'll be in this miserable existence for the rest of your life.

bountybars · 03/01/2025 12:21

As an autistic mum with an autistic son to be honest his life is just different to yours and what you consider normal. He has spent a lot of time trying to fit in and is exhausted and why should he fit it with what society thinks is norma if he's uncomfortable with it.
You say your son is having issues, it's quite possible he's inherited it from his dad and will live quite similarly, if you don't want to be with him don't, you can leave him be but don't expect him to change and don't expect your son to change if he's the same.
What would you say to your son's future wife who felt this way about her husband and the father to her children?
That's not a trick question but just something to consider.

Gatecrashermum · 03/01/2025 12:21

Divorce

He can be his true self in social housing on benefits.

He's not looked after you- you're going to burnout soon too, by the sounds of it.

Focus on yourself and your kids - good luck.

JimHalpertsWife · 03/01/2025 12:23

Separate. You have done your best, more than a lot of women would.

It's worth keeping an eye on your sons behaviours as autism has a genetic link.

SquirrelSoShiny · 03/01/2025 12:24

There are threads here for people with ASD partners and you should read the experiences there.

Staying with him will slowly destroy you. Some of us waited and hoped and our health failed. We are now trapped. Get out while you still can.

MorrisZapp · 03/01/2025 12:25

My brother is late diagnosed autistic. All three of his long term partners have finally and sadly broken up with him (not all at once I mean throughout his life!) and he is single. It's sad but I don't expect any fabulous, outgoing woman to live her life with what is in effect a grumpy, pedantic git.

My brother is clever, funny and musically talented but christ I couldn't live with him. You're allowed to move on, diagnosis or not.

SquirrelSoShiny · 03/01/2025 12:27

Itsallmakingsense · 03/01/2025 12:14

Yes this is exactly what has happened, he tried very hard for 20 years until it all broke down and now he is able to be his true self. I respect that and totally get it- but I can't forgive his complete denial all the way through when I kept telling him i thought something was wrong.
And I am angry at myself for putting up with this for so long but I was ground down by it all to a shell of myself with no self confidence at all.

Yes the feeling eroded by the lack of interest and genuine emotional reciprocity is common. It is unbelievably destructive. You will end up not even knowing who you are anymore. Good luck OP.

NeedsMustNet · 03/01/2025 12:27

One thing I would suggest is that you don’t feel controlled by your husband’s wishes / demands where they operate so clearly against your own interests.Because in effect this becomes a new kind of masking that you are forced into, without your agreement.

If you’d like to tell a member of your family that your husband has autism, eg., you need to be able to do this. It’s unfair for him to put endless expectations on you and yet you can’t do the same for him. Also, it will lead to burnout for you if you haven’t already got there. I would ask the person you tell not to tell anyone else. It’s important that you can vent if you need to.

I am slowly coming to terms with my own husband’s autism. He is completely in denial. But one of the things I realise with sadness is how many of my needs have repressed / suppressed for the entire course of our relationship because essentially I knew I was in a quasi-caring role from early on - even if I didn’t admit it to myself - and chose to keep all of my frustrations about it secret. Even to the point that it made me ill / become a different person! I would agree with the point you make about the other partner being manipulative. It might not be conscious on their part, but that doesn’t make it any easier to live with. So for example my husband’s behaviour changed markedly as soon as we were married and not a moment before. Much less sociable, hugely less sexual, less outgoing in other ways, more controlling and less willing to see my needs as real / equal. I didn’t consent to any of this being a part of our marriage contract or of our long term future. If I had known, I wouldn’t have agreed to it.

AutumnFroglets · 03/01/2025 12:30

Unfortunately our son who is an older teen now despises his father and they don't speak. Which is very hard to live with?

If you don't leave you will lose your son as he will, start to despise you for staying, you also have PTSD caused by your marriage. So what is keeping you there - guilt? You have nothing to feel guilty for, you have tried and tried and tried but when even the professionals can't help why do you think you have the capability and expertise to be different?

Leave. He can get professional support to help him find housing etc so don't feel you have to stay in a bad marriage due to that.

MyNewLife2025 · 03/01/2025 12:34

Dh is on the spectrum too. And so is dc.

im going to say, don’t do what I did and stay.
Don’t stay because he can’t help being the way he is.
Dont stay because you somehow feel responsible (you should manage to be more accommodating, his life is hard with a disability etc….)
Dont stay thinking things will change if you manage to crack the code and react ‘the way he needs you to react’
Dont stay thinking you’ll make do with what he can give you and you will seek other ways to feel fulfilled (through friends, hobbies etc….) ‘because one person can never fulfil all your needs’.

This is who he is.
And it’s fucking hard to admit that this is what you will always get. Aka your needs will never be fulfilled by him. Not when you started believing he was something else. He could fulfil your (totally normal and acceptable) needs. Needs for care and love and affection.

Honestly, you need to look at your marriage in a much more transactional basis.
Does he feel your basic needs for love?
Does he make you happy?
Can you build a future TOGETHER?
If not, then please leave.
Hell be able to live on UC + PIP + LWC.
But staying wont just lead to burnt out but it will make you ill.

You need to choose yourself.
It took me so much longer than you to realise that. And seriously the cost has been very high.

NordicwithTeen · 03/01/2025 12:35

"He has also said he doesn't feel love or have any feelings for anyone" - this sounds more like a sociopath or psychopath not Autistic. Perhaps he has Autism combined with something else which enabled him to mask?

Either way, if you are miserable leave. Your kids want you to be happy and you've still got a chance to have that happiness.

SquirrelSoShiny · 03/01/2025 12:36

Itsallmakingsense · 03/01/2025 11:55

Yes it's been 5 years since the diagnosis. He has accepted it now and seems to use it to his advantage in some respects which i don't like. It's like he now has a valid excuse to never have to go anywhere so now he doesn't, and i can't moan at him about it because he is "ill" he says to me. He still makes me out to be the bad person.
When he was at his worst, I cannot tell you the amount of stress I was under and he wouldn't let me tell anyone as he didn't want them to know. Even my own parents. For a year I had to act as if everything was normal even though we had teams of people in our house for him all the time.
Eventually I cracked and told my parents he had had a breakdown. They haven't helped in any practical way but have given me somewhere to vent. But it makes them dislike him more.
It made me ill. I put on a huge amount of weight through comfort eating, became slightly reclusive myself. I have lost half of my hair as it all fell out and has turned white. And I now have PTSD due to it all.
He laughs in my face if i say any of this , and says there was no impact on the family at all.
I don't know if he says this because he genuinely can't remember as it's all a blur he says, or if it's guilt , or he just doesn't care or isn't able to recognise the impact on us.
Unfortunately our son who is an older teen now despises his father and they don't speak. Which is very hard to live with

I missed this post. Please don't stay. He may be autistic but he is also an unbelievable prick. You deserve so much better Flowers

NameChanger91736 · 03/01/2025 12:38

FoolishHips · 03/01/2025 12:15

I know you said you didn't mean to be offensive and your DH sounds like an idiot.

However, your husband has what's called alexithymia and that's why he can't feel emotions. It's common amongst autistic people but we're not all like that. I'm autistic and I would say that my personality is more like yours than his...very emotional and sensitive and always feeling guilty if I feel that I've not been the perfect mother.

We don't tend to be manipulative either....that's definitely more of a narcissistic trait.

From my own experience I think autistic men struggle more with socialising and emotions than autistic females. I feel sorry for them in a way because most of them are very rigid and dont change. Their exactly who they were 20 years ago. I feel like females got the better deal as we are more switched on with our feelings ect ( somtimes a little too much, I'm far too sensitive and can be very emotional depending what it is )

Howmanyshoeboxesdoesittake · 03/01/2025 12:38

Some appalling misunderstanding and prejudice against an ASD sufferer on this thread.

I sympathise op with what you and your dc have been going through, and I know you don’t mean to cause offence, but honestly you need to do some more research in to ASD.

How on earth could he have been aware at sixteen when he wasn’t aware of his condition all of these years later and it sounds like he has fought against it?

The man I met wasn't him at all and he was fully aware of it.

Totally unfair op! As is the susbsequent comment about « gaslighting ».

I appreciate how hard this is for you but as the parent of a young adult with ASD your dh was not aware that he was masking if he didn’t know he had autism. That’s like blaming someone for using a walking stick because of some unknown pain! He couldn’t deliberately deceive you if he didn’t know why he felt like he did. He was doing what he could to survive. As a young man, there is huge societal and peer pressure to “act normally”.

Your dh didn’t want or choose to be in a position where he had to pretend that he was ok. He was probably going through horrendous hidden struggles relating to extreme anxiety and depression (common comorbidities of ASD) and it took everything he had to get himself out of the front door every day.

Also, I really feel for him having ASD burnout. That comes from the equivalent of having to pretend to feel normal every day over many years. So imagine if going outside every day felt like the equivalent of standing under a roaring waterfall, or being rolled around in a cement mixer, because that’s the level of sensory intensity that some people with ASD experience on a daily basis. It’s exhausting and unnerving.

Imagine not being able to recognise other people’s facial expressions or emotions or interpret what they are saying. Your world is full of anxiety and confusion.

Your dh probably dealt with his ASD by working at night. And then couldn’t cope when that stopped.

Also when you say:
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.

He wasn’t manipulating you. Autistic people are always accused of being manipulative. And that’s because “normal life” demands and expects that you pretend in order to survive. And he didn’t know he was dealing with a brain that is rewired differently to yours!

I am not trying to invalidate the difficulties you have gone through op, and are still going through. Obviously your experience of marriage is an unhappy one and your dc have suffered also through your husband’s ASD. That is very apparent by your op,

But you would not blame your dh in the same way if he had contracted a disease like Parkinson’s or a brain condition that prevented him from being emotionally available to you and the dc.

You are fully within your rights to want to go and live your own life now and you are obviously struggling with reframing everything that you have experienced in the light of your dh’s diagnosis, and you are entitled to feel angry and robbed of a happy marriage, but please keep in mind that your dh never wanted this either.

BananagramBadger · 03/01/2025 12:39

He’s not ill. If you leave you are not leaving someone ill. You would be leaving someone whose personality and chosen lifestyle are incompatible with your own. And that’s ok.

Sparklysnowman · 03/01/2025 12:40

You don't have to stay with him. You are absolutely allowed to leave.

I could lecture you endlessly, because I totally understand your position, but to be honest, my counsellor summed it up in her first sentence to me. You have given him so much or your energy, it is not going to get better, you need to put yourself first now.

MyNewLife2025 · 03/01/2025 12:41

What would you say to your son's future wife who felt this way about her husband and the father to her children?

@bountybars I think the situation is quite different when one has a diagnosis as a child and has been taught techniques to deal with meltdowns, try and prevent them and generally learnt strategies around their autism.

But if my ds was married and his dwife was telling me she wanted to leave the marriage because she couldn’t cope with his autism, I’d tell her to go Wo a backward glance.
Because they aren’t compatible. The way they both want/need to live aren’t compatible. And when your needs are clashing with each other (like needing quiet and being in your own vs needing social contact and talking), no one is right or wrong. It just can’t work.

Time to also avoid shaming people for not coping with certain disability.
And I say that as someone who is disabled (by illness rather than ND)

Seasonsfeastings · 03/01/2025 12:41

You risk your DC growing up and not wanting to come home. Your teen boy doesn’t talk to his Dad. My guess is that he will leave home and not look back.

LadyKenya · 03/01/2025 12:41

Doggymummar · 03/01/2025 12:03

Actually, he sounds really horrible! My husband is wonderful and we work together really well, I am the opposite of him in so many ways. We are like two halves and together we are stronger.

He is kind, generous and will mask with other people, he has learned from me how to flatter and make small talk with people and is doing really well at work. He had just been told he needs to speak out more on meetings and we are working in that.

I couldn't stay with your husband, how you have described him here, I think there is more than autism going on here. We don't have sex, and I too gained weight lost hair and went white whilst he had burnout for three months last year, but he sought help, engages with it. We practice the tactics together before he goes out by himself, which he will do, he went to boots yesterday to pick up medication.

Your husband seems to be revelling in the diagnosis and using it as an excuse to be an awful shitty person, I'm sorry to say. I think your life would be better without him.

I think that your post is very harsh on the OP's Husband. It does not matter what your Husband does, he is a different person, who happens to have the same condition, but should not be compared. The OP's Husband is not a robot, and has probably been acting in an unnatural way, for him, for years, and it has done him no favours. Good for you if you have managed to "train" your Husband. To label him an awful shitty person is uncalled for.

Applepoop · 03/01/2025 12:42

I say this as someone with a lot of autism in my family. My child, my siblings, probably me. Get rid of this man. It's more than autism. Autism does obviously cause differences, but it does not cause people to behave like absolute cunts with zero respect for others. You have burnt your health and soul and he couldn't give less of a shit. He won't talk to his own teen son. Get rid of him, live with just you and your kids and get your own life back on track. What he does is up to him, and his responsibility.

cansu · 03/01/2025 12:43

It might be different if he saw his diagnosis as a means to understanding himself and to work on ways to lessen the impact on others. However in my experience the autistic partner doubles down and feels that there is no longer any need to pretend or mask. I have lived through something similar. He won't change and he is unlikely to ever see how his behaviour impacts on you. I would get out as soon as you can.

RockOrAHardplace · 03/01/2025 12:43

I could have written this in relation to my elder brother who was diagnosed in his early 50's after the proverbial hit the fan. He won't acknowledge the diagnosis unless its to his advantage.

We always knew he was different but the older he has got the more reclusive he has become and doesn't seem to have any consideration for other people at all. He can do what he wants and my Mum blames it on the autism, its his "get out of goal free" card for everything. He is a high functioning autistic who has professional qualifications and his own business. In his business he understands what he needs to do to be professional but can't apply that same rational to his family life.

Knowing about his diagnosis, explains a lot. My brother has always absolved himself of any responsibility for everything and put himself first, he has no ability to empathise. He is lonely and miserable. I take no joy in seeing him like this and the older he gets the worse he is. He is not trying to improve his lot, he is sinking into abject misery and taking us with him.

I also have a young niece (in my husbands family) who is autistic and it profoundly affects her life. But she tries. She doesn't interpret emotions in the way I do, but she has come to understand social "norms" for lack of a better word and will hug you upon meeting and then pats you on the back to signal its over. She knows I like to play Uno etc and she will volunteer to play although I do know she hates it. It means nothing to her emotionally, other than she is trying to fit in and understand my needs. I can work with that. They can't help being autistic but they also need to help themselves and not expect everything to be done for them and this is where I struggle with my brother.

Elderly Mum is told (not asked) he is coming for Sunday lunch, he wants it at 2pm, Mum falls in line with it, nuts to the rest of us that were invited at 12. 2pm comes, no brother, Mum will not dish up until he comes. 4pm comes no brother and he isn't answering the phone. We get burnt and mushy offerings. Two days later he rings up and says he is on his way as if nothing had happened. Mum makes him another meal and says nothing.

When he started doing this (he lives very far away) we were pulling our hair out from worry, imagining him in a ditch somewhere or lying unconscious in his bed. But no, he has simply changed his mind and is not coming. We are supposed to be psychic. Along with his Autism, he also has demand avoidance so when we ring, to find out where he is, he can't cope so avoids the call. He does not do this at work, he makes an appt with a client, and if he is going to be late, he rings and lets them know. But when it comes to family, and there maybe an emotional element to the call, he cannot face it and will not make the call - this is demand avoidance.

He won't join in stuff for the greater good or because it makes them happy whereas my niece does. I genuinely believe that autism doesn't rule out other personality traits too.

I understand that it is how he is wired and that he has coping mechanisms in place to protect himself but constantly having to sacrifice my own wellbeing and that of my families for him is annihilating the family dynamics. I am forever left dealing with the fallout and get nothing from the relationship. I love him, he is my brother and I want him safe and happy but he is incapable of making any effort to meet me even part way. In my family, our needs have constantly been sacrificed for him and I shamefully say I cannot cope any longer.

What really gets me is that when I explain how I feel, all I consistently get is....he can't help it. No one denies this, but they won't accept from me that I can't help the way it makes me feel and has me on my knees because of how it affects the family dynamics.

So I say this to you, you need to sit your husband down and tell him that you understand that no-one spotted his autism when he was younger and if they had, things may have been different. But he is becoming more and more withdrawn and you no longer feel any loving emotional exchange between you, you feel more like his carer and its not the right environment for the kids.

Tell him he needs to try and get counselling and support and at least try to address some of the issues you have, otherwise you are walking away with the kids.

Do not let him or others guilt trip you.

NOTANUM · 03/01/2025 12:43

You have endured such a lot already and given that the relationship between you and DH, and DH and DS, is completely fractured, it seems like divorce is the only option. See it as saving your son if you must but you do need to leave.
I understand you are worried about who will care for him but it’s not your priority.
I would make plans to have him move out or move the rest of you out. Call adult social services if you feel you need someone to step in, or his family. But make that call once you’re out.

supersop60 · 03/01/2025 12:43

SquirrelSoShiny · 03/01/2025 12:36

I missed this post. Please don't stay. He may be autistic but he is also an unbelievable prick. You deserve so much better Flowers

Agree. He has behaved very badly to you OP.
Don't let this be your (or your DC's) story