Married but have parallel lives...

[hangin_in_there]

I'd like some insight from those who are on the spectrum (or even their partners).
Bit of a marriage and family question.

Do others who are married basically live parallel to their autistic partners?
We've been married almost 15 years and have an ASD, ADHD teen and 10 year old son (likely ADHD also), I am ADHD and possibly autistic as well and husband is diagnosed ASD and ADHD.
Things are always very stressful, our teen daughter is quite complex and I am primary carer to both kids.
I basically shield my husband from a lot, he is triggered by her meltdowns, behaviour etc he can't help in most situations and gets very easily stressed.
His coping mechanism is work (works 2 jobs) and one particular hobby.
When he's not at work he just wants to go out and partake in his hobby, which is fine but we (myself and kids) very rarely see him.
I run the household, take care of the kids, appts, make sure husband has everything he needs and I have been a stay at home mum since my eldest was born. He struggles to meet any of their needs which has resulted in me needing to be available for them 24/7.

Basically he will go about his daily business parallel to us. Generally if he plans things I will be told after the fact and just have to accept it.

I've expressed how I would love to do more family activities like we used to do, hiking, family drives etc but if something doesn't fully interest him he just won't want to do it. Our son expressed wanting to partake in a different sport to what he normally does and my husband flat out told him he's not very interested in that sport so probably won't take him.
Our son is the kindest most helpful child ever and he is actually the one that helps me with everything. He has started becoming very affected by his dad's lack of wanting to be around and very resentful for having to help out so much.

We've had many chats about these issues including counselling and it all comes back to needing open communication. Unfortunately as soon as I will talk about an issue, express mine or our kids needs, he shuts down. Every time.

So the kids and I are essentially living our lives and hes living his life.

I also have to be careful with how much I push anything as he has tried to take his life a couple of times due to extreme overwhelm.

Im completely burnt out but he can't help me and it feels very lonely and i often wonder if this is just how it will always be and I just need to accept it and find some way to cope.

Essentially I just want to know if this is similar to others experiences with marriage and raising children. Maybe some helpful advice?

 

[AprilR]

I am not married or have children, but i am a child of an undiagnosed autistic father and NT mother.

If he is working two jobs, that must be exhausting so maybe he does not have any energy left to do anything else than his interests. My dad who is also autistic is like that. But he was not as neglectful as what you described.

I think your best bet is to divorce, bc you can't change anyone. And if this goes on, you will end up resenting him for something that is not under his control.

 

[AuroraBorealis]

I think that situations like the one you describe are not uncommon, maybe even more so among autistic partners, but that doesn't make them alright. If one or both partners feel unhappy with the situation, that's always a problem that needs to be addressed.

My partner (likely ASD) and I (ASD, likely ADHD) sometimes have phases of few days till 1-2 weeks tops where we interact less and tend more towards parallel lives. That can happen during stressful phases when we're both particularly tired and overworked (by everything, not just our paid jobs). I usually have less of a problem with this, and it's usually my partner who will express after a certain time how he feels like we haven't had much time to connect recently and that we should try to change this again. I believe that this can happen for any couple, not just for autists. Autists just might have less of a problem with this, because we tend to be happy in our own thoughts and worlds and need less daily interaction (generalizing here).
We don't have children and might never have any, exactly because of this - we can't compensate each other's meltdowns and overstimulated phases all the time.

The situation you describe, however, sounds much more difficult. You're not just leading parallel lives, you're overworked and your partner seems to be oblivious to the fact that you need help.

Unfortunately as soon as I will talk about an issue, express mine or our kids needs, he shuts down. Every time.

That's hard. It could be due to him being chronically overworked and overstimulated too. Working 2 jobs, plus having kids at home, must be incredibly exhausting and overstimulating for your husband. However, that doesn't just make it fine. There can be phases in a couple where one partner needs absolute consideration from the other one for a certain time, and where one partner takes over everything - household, meals, shopping, paying bills, appointments, maybe even work - in order to give the other one a needed break from life. I don't believe that this is a problem, as long as it's not permanent, and as long as communication stays open and the compensating partner can say if they're overworked and can't handle the situations any longer. But in your case it sounds like this is the permanent situation, and you're burning out and feeling worse and worse about it, as your kids are.

I don't feel comfortable to give more concrete advice than this on a forum. But you should maybe talk to someone who knows you personally about your options here. Do you stay, and if yes, for how long? Do you stay until the kids moved out (if they will), and leave after? To you stay indefinitely? Do you leave now? Those are very serious questions. I hope you have someone close to you whom you can talk to about this.

Being autistic and having a vulnerable state of mental health doesn't give you a free pass to burn someone else out. You seem to be very considerate towards your partner, but you shouldn't burn out by doing so.

All the best!

 

[Alexej]

As someone who is autistic I have come to recognise that I am not good at seeing the relational aspect of married life. I do not intuitivley think about how anything I do might affect my wife. I have come to realiie that this why autism got its name (from autos - self in Greek).

I can relate to a lot of what you say, and what you are doing is a lot, both as a wife and as a mother.

I know you are not talking of this but I have looked a counselling for me and my wife and it was a disaster. The counsellor we then had did not pick up on my autism (it was before my diagnosis) so I would now only go to someone whom I knew are autism aware. There are some people out there who offer services to the autistic community and their partners.

Another line of support for you might be along the lines of Cassandra syndrome.
Cassandra syndorome is a term for the spouses of folk (often men) who are on the spectrum and whose domestic lives are very difficult.

If you let us know which country you are in I might be able to point you towards som relevant sources.

 

[Tiffany Kate]

Communication.

If your husband is autistic and working two jobs, as others have said, he may have reached the maximum capacity of what he can physically cope with. And once a person has reached their maximum capacity, they can't cope with any more - no matter how much they might want to, other people might want to, or how much other stuff there is that needs doing.

There is no point expecting someone to be able to deal with more than they physically can. If you keep expecting more than people are capable of delivering, you will only make things worse.

That is what "disability" means. You wouldn't expect a wheelchair user to run foot races. Don't expect someone with an "invisible" disability to do what they physically can't do either.

The problem with autism is that it's a communication disability. So sometimes even trying to talk about what the problem is, makes the problem worse. This will be all the more so if your husband feels (rightly or wrongly) that you are accusing him of being selfish, or are going to demand that he do things that he knows he won't be able to cope with.

As a family, you all have a maximum amount of stuff you can collectively cope with. It sounds like - as a family - there might be just too many things. It may be worth having a think about which things are compulsory (earning money, housework, keeping the kids alive), and which are varying degrees of optional (hobbies - everybody's hobbies). Bearing in mind, of course, that hobbies can be important for mental health, so factor that in.

Yes, it's nice to be able to give the kids all the opportunities they want, but sometimes it's just not possible to do everything.

It's also worth pointing out that, regarding your son's wish to do a different sport, which your husband doesn't want to take him to, that this is not necessarily as simple an issue as it may seem. Taking your son to (for example) swimming lessons instead of football practice involves going to a new place, and dealing with a whole new set of people. Is this one of those things where parents have to stand there.... making conversation? A new set of parent-conversations to deal with. And if your husband has no interest in the sport involved, he won't have a ready-made conversational topic. Switching from taking his kid to football practice (which he knows he can deal with) to swimming lessons (new and scary) isn't necessarily an easy switch - it's potentially a minefield of stress and terror for an autistic person. And - if your husband doesn't feel able to, or doesn't know how to, articulate that - it may come out of his mouth as "I'm not interested in swimming so I'm not going to do it."

If possible, I'd say, have a conversation with your husband about how he feels (bearing in mind that autistic people can be pretty bad at describing feelings). You haven't said anything about asking your husband how he is coping - just about what you want from him, and what you want him to do, in addition to what he's already doing.

If he's already on the edge, being harassed and harangued about how much of a failure he is as a husband and father is really not going to help. Remember: it's not just about what you mean - it's about how it feels at his end.

If you want someone to do something they're not doing, the first step is to find out why they're not doing it.

If you can see things from your husband's perspective, then maybe - together - you can work out a way forward. If he's on the edge, then just do more is unlikely to be the answer. It may be that some things have to give, and if there was a simple, easy way forward you would probably have found it already. It's going to be hard.

One of the hardest questions (in many ways) is, "Do we need money more, or less, than we need time?" Because often you can't have both.

But in any negotiation, assuming from the start that someone is being deliberately selfish, lazy, and obstructive generally isn't the way to go. (They may well be selfish, lazy, and obstructive, but that should be an opinion of last resort.) Assume good faith first (and you may either be pleasantly surprised, or sometimes you may shame someone into better behaviour! People will often rise or fall to the level of your expectations of them.)

Assume that your autistic husband is doing his best that he knows how. If he's on the edge, even talking about anything is going to be difficult and stressful. So go gently. Try to see things from his perspective. Let him know that you appreciate what he is doing. What does your husband think about how things are going in the family? Does he have any suggestions about what might be done differently? Or what changes it might be possible to make, if you work together?

Yes, I can imagine that it is exceptionally, brutally hard to feel that you are the only adult in the house, and you are having to do the "adulting" for everyone. But there is no point expecting your husband (or anyone) to be what he is not. You will get better results if you accept that some things he just can't do, and work together to figure out what you and he, together, can do.

Good luck.

 

[Rodafina]

Welcome to the forum, @hangin_in_there.

Do the 2 jobs amount to far more than the hours of 1 full time job? Is it absolutely necessary that your husband has 2 jobs?

I think you are working within difficult confines here - the burnout from working 2 jobs could be very significant, leaving your husband with so little to work with after his work hours. Is there a chance that he feels that he is fully doing his part to support the family by providing financially for you all?

Also, it sounds like you have protected your husband (or shielded him, as you said), from a good amount of responsibilities due to his reaction to stress and to his previous suicide attempts. This makes a lot of sense as you must be worried about seeing him in that place again. I can see how this may have set up an unbalanced dynamic, however, and allowed yours and your husband's roles in the family to become very different and separate.

Do your son and husband have direct communication with each other or do you act as the go between? I think based on what you described, it could be helpful to support your son in speaking to his father directly about how he feels and the impact that your husband's actions have on him. Perhaps, together, they can find ways to bond and spend time together that works for both of them.

Lastly, I would encourage you to find the support that you need. If you and your husband cannot find a balance that is comfortable for you right now, perhaps you can look to outside supports. For example, hire a house cleaner so that you have a few hours to yourself each week. Perhaps, you could use this time to have individual therapy for yourself or spend time with supportive friends. Consider hiring someone to care for your children one afternoon a week so they can facilitate rides to sports/activities. You do sound very understanding of your husband and it appears you've made great efforts to take care of him. I would just say to extend these efforts to yourself as well.

 

[AprilR]

@Tiffany Kate articulated it really well! I could not communicate a lot of the things that came to my mind just reading OP's post.

When i was working, i was basically dead to the world after work ends, even caring for myself. I can't imagine two jobs and caring for a family at all.

But if your husband made that choice, he should share the responsibility, otherwise it is not fair to you.

 

[Tom]

I think some form of therapy, either counseling or perhaps medication might be helpful for him. But it can be difficult for people to first see and then act on the real problems and it requires him to buy in to the idea. Rather then approach it as something he should do instead plant the seed as something he might consider and be helpful.

 

[Neonatal RRT]

I'd like some insight from those who are on the spectrum (or even their partners).
Bit of a marriage and family question.

Do others who are married basically live parallel to their autistic partners?
We've been married almost 15 years and have an ASD, ADHD teen and 10 year old son (likely ADHD also), I am ADHD and possibly autistic as well and husband is diagnosed ASD and ADHD.
Things are always very stressful, our teen daughter is quite complex and I am primary carer to both kids.
I basically shield my husband from a lot, he is triggered by her meltdowns, behaviour etc he can't help in most situations and gets very easily stressed.
His coping mechanism is work (works 2 jobs) and one particular hobby.
When he's not at work he just wants to go out and partake in his hobby, which is fine but we (myself and kids) very rarely see him.
I run the household, take care of the kids, appts, make sure husband has everything he needs and I have been a stay at home mum since my eldest was born. He struggles to meet any of their needs which has resulted in me needing to be available for them 24/7.

Basically he will go about his daily business parallel to us. Generally if he plans things I will be told after the fact and just have to accept it.

I've expressed how I would love to do more family activities like we used to do, hiking, family drives etc but if something doesn't fully interest him he just won't want to do it. Our son expressed wanting to partake in a different sport to what he normally does and my husband flat out told him he's not very interested in that sport so probably won't take him.
Our son is the kindest most helpful child ever and he is actually the one that helps me with everything. He has started becoming very affected by his dad's lack of wanting to be around and very resentful for having to help out so much.

We've had many chats about these issues including counselling and it all comes back to needing open communication. Unfortunately as soon as I will talk about an issue, express mine or our kids needs, he shuts down. Every time.

So the kids and I are essentially living our lives and hes living his life.

I also have to be careful with how much I push anything as he has tried to take his life a couple of times due to extreme overwhelm.

Im completely burnt out but he can't help me and it feels very lonely and i often wonder if this is just how it will always be and I just need to accept it and find some way to cope.

Essentially I just want to know if this is similar to others experiences with marriage and raising children. Maybe some helpful advice?

All I can suggest is to talk through a therapist or counselor.

What you are describing is an imbalance in the relationship. I do understand that working a lot of hours can easily burn someone out, and the last thing that is needed is more stimulation when all you want to do is hide away. I get it. Been there, done that.

I've been married for nearly 40 years, and when the kids were young and at home, there is a lot of demands, time, energy, and money. My wife and I had the advantage of working in the healthcare field at a system that allowed us to do self-scheduling. I would put my work dates into the schedule, then she would fill in as best she could on my days off, thereby minimizing any need for childcare. At home, as you know, there are all the domestic duties, making meals, and of course, the kids. Neither one of us were in a position where we could simply "pass the buck" onto the other person. Things needed to be done, and frankly, how we felt mentally or physically was not relevant. The situation was pretty much, ""F" your feelings, you have responsibilities.", and that was pretty much how it was.

The other layer to all of this was that the #1 rule in the house was that our home was a sanctuary of peace. #2 was no politics nor religious discussions beyond that of academia. Feel free to discuss things, but the second a voice is raised, you broke "house rules" and the conversation ended, even if things were not resolved. Feel free to bring up the topic again later when you've cooled off and are in better control of your emotions. Initially, it was difficult, because everyone in the family are intelligent, driven, "alpha" types and nobody likes to be wrong, but with my autism, I would have my "shut downs" and then the conversation would end, anyways.

We don't need to go down the road of cultural "gender roles" of what a father and husband "should be", but regardless, there should be a shared set of responsibilities and a component of reliability there.

 

[hangin_in_there]

Communication.

If your husband is autistic and working two jobs, as others have said, he may have reached the maximum capacity of what he can physically cope with. And once a person has reached their maximum capacity, they can't cope with any more - no matter how much they might want to, other people might want to, or how much other stuff there is that needs doing.

There is no point expecting someone to be able to deal with more than they physically can. If you keep expecting more than people are capable of delivering, you will only make things worse.

That is what "disability" means. You wouldn't expect a wheelchair user to run foot races. Don't expect someone with an "invisible" disability to do what they physically can't do either.

The problem with autism is that it's a communication disability. So sometimes even trying to talk about what the problem is, makes the problem worse. This will be all the more so if your husband feels (rightly or wrongly) that you are accusing him of being selfish, or are going to demand that he do things that he knows he won't be able to cope with.

As a family, you all have a maximum amount of stuff you can collectively cope with. It sounds like - as a family - there might be just too many things. It may be worth having a think about which things are compulsory (earning money, housework, keeping the kids alive), and which are varying degrees of optional (hobbies - everybody's hobbies). Bearing in mind, of course, that hobbies can be important for mental health, so factor that in.

Yes, it's nice to be able to give the kids all the opportunities they want, but sometimes it's just not possible to do everything.

It's also worth pointing out that, regarding your son's wish to do a different sport, which your husband doesn't want to take him to, that this is not necessarily as simple an issue as it may seem. Taking your son to (for example) swimming lessons instead of football practice involves going to a new place, and dealing with a whole new set of people. Is this one of those things where parents have to stand there.... making conversation? A new set of parent-conversations to deal with. And if your husband has no interest in the sport involved, he won't have a ready-made conversational topic. Switching from taking his kid to football practice (which he knows he can deal with) to swimming lessons (new and scary) isn't necessarily an easy switch - it's potentially a minefield of stress and terror for an autistic person. And - if your husband doesn't feel able to, or doesn't know how to, articulate that - it may come out of his mouth as "I'm not interested in swimming so I'm not going to do it."

If possible, I'd say, have a conversation with your husband about how he feels (bearing in mind that autistic people can be pretty bad at describing feelings). You haven't said anything about asking your husband how he is coping - just about what you want from him, and what you want him to do, in addition to what he's already doing.

If he's already on the edge, being harassed and harangued about how much of a failure he is as a husband and father is really not going to help. Remember: it's not just about what you mean - it's about how it feels at his end.

If you want someone to do something they're not doing, the first step is to find out why they're not doing it.

If you can see things from your husband's perspective, then maybe - together - you can work out a way forward. If he's on the edge, then just do more is unlikely to be the answer. It may be that some things have to give, and if there was a simple, easy way forward you would probably have found it already. It's going to be hard.

One of the hardest questions (in many ways) is, "Do we need money more, or less, than we need time?" Because often you can't have both.

But in any negotiation, assuming from the start that someone is being deliberately selfish, lazy, and obstructive generally isn't the way to go. (They may well be selfish, lazy, and obstructive, but that should be an opinion of last resort.) Assume good faith first (and you may either be pleasantly surprised, or sometimes you may shame someone into better behaviour! People will often rise or fall to the level of your expectations of them.)

Assume that your autistic husband is doing his best that he knows how. If he's on the edge, even talking about anything is going to be difficult and stressful. So go gently. Try to see things from his perspective. Let him know that you appreciate what he is doing. What does your husband think about how things are going in the family? Does he have any suggestions about what might be done differently? Or what changes it might be possible to make, if you work together?

Yes, I can imagine that it is exceptionally, brutally hard to feel that you are the only adult in the house, and you are having to do the "adulting" for everyone. But there is no point expecting your husband (or anyone) to be what he is not. You will get better results if you accept that some things he just can't do, and work together to figure out what you and he, together, can do.

Good luck.

Hi, thanks for your reply. I couldn't give much context in my original post as I felt like I would have wrote an extensive essay so I'll write to the points you've brought up.

Everything you've said is very valid.
I do believe he is in burnout and have discussed this with him especially after our daughter went into burnout towards the end of school.
A solution would be for him to give up one of his jobs but he simply won't. One job is his main income and the other is nursing 2 days a week. He loves that job but the environment, people, transitions can be very difficult.
Unfortunately I don't think he can identify burnout for himself. It seems (from me observing him) to come on quickly and much more emotionally/mentally. So it's hard to 'catch it' so to speak.
I have expressed to him how I think giving up a job would help him to focus on himself, family etc but he is set on keeping the 2. He is also set on starting his bachelor degree this year also, although I can see this will add a lot more strain to his mental health and the family dynamic.

I totally get your thoughts around the sport and can see how that would be difficult. This was just one example but we have this issue with many parts of our life. If our son wants him to go throw the basketball, play a game with him, kick the ball etc and my husband doesn't want to do it he will normally give a few reasons why and my son will either admit defeat or he can sometimes get really upset. I normally will try and speak to my son about dad being tired from work, or that he's doing something at the moment etc and generally I will offer to do that thing with him but it obviously then spreads me even thinner sometimes.

I know he is not being lazy or that it's even a choice most of the time. I know him enough and have supported him many times to know this is a genuine struggle that I can't just flick a switch on.
It becomes frustrating to me because I have genuinely struggled with our situation and with our teen often spending days crying and breaking down but when I speak to someone eg my sister, my mum, it all comes back to how is my husband supporting me, why is he working so much etc which makes it more stressful for me because Im having to constantly give excuses and explanations as they arnt overly autism aware. This has left me extremely isolated.
My husband sees a psychologist weekly, he's engaged with a psychiatrist and his GP regularly. I also see a psychologist fortnightly but will only get so many sessions so that will stop soon unfortunately. Both my kids also see a psychologist.
The most recent suicide attempt I really had to put my foot down in regards to my husband being upfront with his psychologist. His psychiatrist says he has a personality disorder, 'avoidant disorder' I believe. So his coping mechanism is shutdown, flight, escape, pretend all is well. And he was telling his psychologist every week he was doing well and would chat about work and his hobby. Then his suicide attempt. This was also in the midst of me being in burnout. I really needed him to start working with his psychologist honestly.
But even so, I do believe he's burnt out. But I know something has to give for him to get out of that but he refuses to give anything up and infact wanting to add more (study).

He does know we want to spend more time with him and he is aware of all the issues I've wrote about. It's the 'doing' that's the hard part, the change and the consistency is where he struggles. Something may change one day but the next it will be back to the same.
I do have a friend who I believe is autistic and she believes her husband is ADHD and I do see similarities with them and us. Her husband works alot and she is running herself into the ground with her kids (2 who are special needs).
That's why I ask is this just apart of neurodiverse relationships? You offered some really good insight though and honestly I don't want someone to just tell me to divorce as of course that has crossed my mind many times, but my commitment is stronger than the need to just leave.

 

[hangin_in_there]

@Tiffany Kate articulated it really well! I could not communicate a lot of the things that came to my mind just reading OP's post.

When i was working, i was basically dead to the world after work ends, even caring for myself. I can't imagine two jobs and caring for a family at all.

But if your husband made that choice, he should share the responsibility, otherwise it is not fair to you.

He has definitely made that choice. He's very driven and works in emergency services. He refuses to give up one job and infact wants to start his bachelors this year.
I have expressed to him many times family and mental health is the priority. I would also like to work for my own mental health so could contribute to the loss of income but I think taking on the responsibility of caring for our special needs child (mainly), and household tasks (cooking etc) scares him. He likes to be busy and so would prefer to be the one working.

 

[Aspychata]

I definitely ran the house, raised the child, handled finances, cars, etc. My ex did work alot, and depended on me. But we spent family time together. I think if you spent small amounts of time together, like making a simple dinner, picking a movie night once a month, checking out exhibits, playing a card game. This would help you connect again as a family unit. He definitely sounds in burnout mode, and l wonder how long he can keep at this schedule.

 

[AprilR]

He has definitely made that choice. He's very driven and works in emergency services. He refuses to give up one job and infact wants to start his bachelors this year.
I have expressed to him many times family and mental health is the priority. I would also like to work for my own mental health so could contribute to the loss of income but I think taking on the responsibility of caring for our special needs child (mainly), and household tasks (cooking etc) scares him. He likes to be busy and so would prefer to be the one working.

That sounds like my dad. He is retired but he can never stay inactive for long. Your husband is perhaps used to work, but not used to household tasks and caring for a child. So it scares him bc he gets overwhelmed.

Maybe when he can take some time off from work, if it is possible of course, you can spend a few days together doing these tasks. Playing with your children, cooking together. If he gets used to it, it might not scared him too much.