Much Worse than I Anticipated

[tinktronik]

I hope you get yourself to an emotional place where you feel good about it all.. you have my utmost respect for how you are handling things, you are a strong lady...

 

More **hugz**

Thanks AC. I am really trying, but then I've been trying all along. The last few days have been pretty good, stable feeling even. We got a lot of work done and been carefully trying out some new suggestions from the mobile lady on how to communicate. Boyfriend has even mentioned "maybe" looking into this autism thing as a decent possibility or taking some meds and doing some serious therapy so that he can go back into his chosen field of work and keep our family together. My brain is like DING, that's exactly what I have been waiting to hear. Lets do some focused work to figure out how to make this work in a way that we reach some satisfaction. Not that he will necessarily stand by that next week or the week after, but it's a small start in a positive direction and I know it's clunking around in there, right.

 

There have been so many strange things over the years that this really makes more sense of, and it's almost a relief. I've been telling his therapists and social workers and psychologists for years that my boyfriend reacts as if a change of the tone in my voice to one of frustration or irritation is a nuclear war missile coming his way. And now I know he really does perceive it that way and it makes him confused and panicky. The 2 times I have ever actually yelled at him in 12 years he "turns off", like completely, he is sitting there but he is not there or anywhere that I can tell anymore. It is frightening. He also loses the ability to read the written word when he is stressed out. And I have told professionals this for years and have been brushed off. Now I feel like..... man, I knew that stuff just wasn't "right". I really am confused that no one heard what I was saying in all this time. But I guess you can't go backwards.

[Zoyalover]

I have a very small support system. Through the years many friends have fallen away over misunderstanding my boyfriend's behavior. I do have a core group of lifelong friends that I can always reach out to though.

 

Family, honestly, have been even more difficult because there has been a good bit of judgmental behavior from them that I do not find acceptable toward anyone. I've found that a large number (including family and others) of people simply fear or turn away from what they do not understand. I've really been disgusted by the attitudes of people in my family towards my boyfriend, some of them with their own diagnosis, and feel they should know better. Some of it is so ridiculous. For instance, my mother does not "like" my boyfriend because sometimes he wears slightly dirty pants in public or sits on the floor in a public space. But you know they are his legs and if he wants to cover them with dirty pants or decides to sit on the floor because it's simply more comfortable for him then really I don't see the huge problem. In fact, I find the notion of a grown man that is comfortable enough with himself to just do what is right for him to be charming.

 

I do however have a couple of people in my family who have always been supportive and made sure I was set to live a life of compassion and make decent choices, and who have a much more open-hearted support to offer.

 

Good, I'm glad that you have some folks on your side, it is important for you to have someone you can vent to who understands and someone you can go to to relax with or have fun with when feeling overwhelmed. It is also good for him to be able to go to his own family and get support especially when you need or want a break...

 

I understand how hard things could be sometimes. My ex struggled with depression and it was difficult for me to handle that.

[Eclypse]

Personally I'm not sure what you're surprised about. You've stuck through with him for 12 years. The diagnosis of his condition changes nothing. He's the same man he was yesterday or 5 years ago and will be in 5 years. If you love him then stick through and support him as best you can, I'm sure after a decade you're experienced in helping him in the best possible way.

 

Me personally though? I would have left a long time ago. It just sounds like a really difficult draining relationship that wouldn't be much fun at all since you don't know what he's going to be like tomorrow.

[tinktronik]

Good, I'm glad that you have some folks on your side, it is important for you to have someone you can vent to who understands and someone you can go to to relax with or have fun with when feeling overwhelmed. It is also good for him to be able to go to his own family and get support especially when you need or want a break...

 

I understand how hard things could be sometimes. My ex struggled with depression and it was difficult for me to handle that.

 

Thank you. I think it's important too. I do have some outlets.

 

Him, not so much. I'm working with his small family to maybe build some connections for my daughter. But to be honest, I think it's largely for his lifetime been "so much potential... why can't you just....." and it's been incredibly damaging to both sides because the more pressure is put on him the less he contacts them and he just can't do pressure. This diagnosis explains why. His father keeps saying he was a normal child, well except for X and X and X and X, and then he did this. And I'm not sure how to say "Yeah, that would mean he was not your average child." His family is asking questions though, so maybe I will send them some literature. He has no friends though he very much does want them. I think eventually we will move on to a large city and that will make it more possible for him to socialize.

[tinktronik]

Personally I'm not sure what you're surprised about. You've stuck through with him for 12 years. The diagnosis of his condition changes nothing. He's the same man he was yesterday or 5 years ago and will be in 5 years. If you love him then stick through and support him as best you can, I'm sure after a decade you're experienced in helping him in the best possible way.

 

Me personally though? I would have left a long time ago. It just sounds like a really difficult draining relationship that wouldn't be much fun at all since you don't know what he's going to be like tomorrow.

 

Well I think I'm surprised as the idea of an autism spectrum disorder never entered my mind, it wasn't even on the radar. He is indeed the same man he was yesterday. I think one thing with this condition specifically is in supporting him time is the enemy, not the friend. I don't have any idea how to support him really, or even to help him. It's apparently difficult for him to live with someone with emotional expression. And it's very difficult for me to live with someone with very little emotional expression that reacts so poorly to even small stresses or emotional displays by others. Over time this has become very taxing for both of us. With time, and help, we may be able to balance some of that and he will become more predictable.

 

I think through the years I have learned that he can be there for some things that are typical in a relationship, but absolutely cannot be there for others. I'm not yet able to wrap my head around what a relationship without certain "fundamentals" looks like but I guess those things have been missing all along. They have been a push and pull through the years, now I know they just have to be absent.

 

Getting the diagnosis puts certain ideas to bed. Figuring out what that means leaves me feeling very unsure about what I personally need, what my child needs and what is best for everybody. I'm not saying I'm jumping ship but that there are things I need to consider.

[tinktronik]

I'm just going to keep posting here. I was up late last night thinking about what is important to me. It's something I have not thought enough about for a long time. I've been busy tending to everyone else and haven't spent enough time on what is acceptable/unacceptable or deal breaker vs. kind of crappy for me. (I've had some incredibly stressful things going on with my children from my first marriage the last year and am heart broken over it, so it's a case of everything coming at me from every direction.) I am finding that already I have seen improvement from our couple's therapy. I'm not quite sure why, other than SO is making efforts, but does not mention why or what he wants or aims for. So already some of the more minor things are starting to feel lifted off of me as he takes on a more reasonable amount of our daily needs. He's actually making dinner with our tot. This week is the first week I have ever seen him show sustained effort with her. But with that I am beginning to explore where I personally am at.

[rumbleseat]

I have been diagnosed as a person with asperger's who is very high functioning, and I have some other experience with asd's as well. i will share what I know and I hope it helps you.

 

- people with asd's are very prone to adjustment disorder, which can often be mistaken for major depressive disorder or even bipolar disorder. Medication alone doesn't do much, but a combines approach of medication and therapy can work wonders.

 

Adjustment disorders: Symptoms - MayoClinic.com

 

- people with asd's don't tend to respond to antidepressants in the same way as everyone else. it may take some experimentation to find something that works. Risperidol is an antipsychotic med that can help with anxiety, obsessiveness, circular thinking, thought rumination, lack of sleep, lashing out, etc. a doctor can help decide if this is a good fit or not

whatever you do, please don't encourage him to take a whole lot of medication unless he really needs it and it will help him. the effects of over medication can be horrible.

 

- while your partner may be able to learn social skills, he will likely never be able to chnage who he is. this doesn't mean that he can't understand how to interact, but it may never do for him what it does for others.

 

- I know some of his behaviors and habits are frustrating, but remember, they are part of what makes him who he is.

 

- if he can't verbalize, he may find it easier to write to you about how he is thinking and feeling. perhaps the two of you could keep a relationship journal together, where you both write in it about how you think and feel. this can be really helpful.

 

- he likely doesn't process sensory input the way you do. noises, light , temperature and other stimuli may overwhelm him. if he can learn ways to deal with this, it may really be helpful.

 

- he may not show his feelings in a way that is conventional, but this doesn't mean that he doesn't feel them, or that he can't empathize with you. Remember...he likely just can't read you. If you tell him how you feel, and use clear language, it will help him to understand you. writing it out to him in a letter can be great.

 

- it does sound like you love him, but no one but you can say if that means if staying with him is a good idea. if you do stay together, it should be because you love him, not out of duty, pity or obligation. those are not fair to either of you.

[tinktronik]

Hi and thanks for your input. I do think he has an adjustment disorder, though I've never heard it called that before. I would like to see him in a position willing to accept the help offered from others to help him meet the goals he wants to meet, ones that I truly do think he can meet as he's met them before. He is capable of so much more that the things we've been fooling around with scrapping by with, and would be more fulfilled with more, but I don't think he can do so without accepting help. It certainly wouldn't hurt to minimize the re-activeness and the daily meltdowns for our family. I'm learning now in our couple's sessions that one of the primary reasons he is not chasing after the career he wants/needs/ lives for is that he is afraid of over focusing on it and losing his family (me and our daughter) because of his one-sided approach. I was very surprised to hear that.

 

I don't need him to change who he is. I don't really need all that much more time or attention as I prefer a lot of my own space in a relationship as well. I find the person he is to be stimulating and sweet, silly and engaging, but infuriating at times and perplexing at others, and even, I will admit, frightening on occasion. I have accepted for a long time that he can be "difficult" and very, very complicated. I think the information both of us receive about this diagnosis is helping to take a look at what is fixed and what may be more flexible. I really have no idea how that will pan out long term though. I think he is desperate for contacts with similar interests but I do not think he is interested in friends socially the way some others may be, and that's okay with me. I don't need him to be outgoing socially. What I do need is for some of the daily misunderstandings from language use to become less intense. I do need him to learn and abide some relationship rules on a somewhat regular basis.

 

He does not show feelings in a conventional way. He mostly only displays anger. He does express excitement verbally but grimaces as if in pain while he does so. So the only real "emotion" he expresses openly is anger or frustration. I thing a journal is a great idea and will work on it.

 

I do think we will likely stay together, but it's Saturday and we are 1/2 way through a rough and very reactive week, so while I am typing that I'm taking a breath for patience. I think he has little insight at this point into his "emotional reactivity". History says I will find the joy in our relationship as I've done for so long now. Our therapist calls me the best lemonade maker she's ever met. She is going to start seeing me privately as well as she thinks I should be treated for PTSD and not anxiety, so that may help the situation greatly on my end. I knew from the first day I met him that there was something "going on with him" that made him a person that was challenging and different but that it also made him other things he is too. I do love him for sure, but other times there is obligation or even pity. So time will tell. There are certainly times I want to jump the fence and run, run, run, but others I'm happily planted right here at home.

Edited October 12, 2013 by tinktronik

[Eternal Sunshine]

Tink,

 

While I don't have much in the way of advice, just want to say that I admire you for the sacrifice and commitment you have shown. Rather than flowers and walks in the park, this is the definition of true love to me.

[tinktronik]

Thanks both experiencethedevine and Eternal Sunshine.

 

I think one of the more frustrating things is sometimes my spouse thinks my intentions towards him are negative when really I do try hard to stay unselfish for the most part. I have certainly given in this relationship more than any other, but I do receive in return, though it's not typically the things you would expect to receive in a relationship.

 

Today is largely a grumbly day though productive. SO went to the grocery store and bought just the few things on the list, which is good, very good. But upon coming home he left the groceries on the counter where our daughter broke into them and ate the sour cream, mostly just smeared it on the counter. (: Then he started lecturing me about how I was the adult in this situation. I calmly pointed out that he was actually the adult involved in the grocery fiasco. He grumbled his way out the door, but I think he got the point.

 

There's a thousand things like that everyday and I think maybe the better I handle them the better we will function. Maybe at some point his outlook will change, maybe not.

[tinktronik]

Good evening all. I've been making progress. I joined an adult support group for people with close AS relationships. The sharing of stories is uncanny in the issues raised. I have made a friend and we joke that our lives are interchangeable because we could literally switch spouses and would be married to the same person mostly. My therapist is now treating me for PTSD and teaching me detachment strategies so that the things my spouse says and does don't effect me so deeply. It's helping. That and the fact that his therapist is now telling him to trust me and to try to let me guide him some, and he's doing it. Amazing, I've been telling him that for years. ha.

 

Today has been a rough day. I got the news that my grandfather who I am close to had several strokes in the last 24 hours and this is likely his last hurrah. I'm feeling pretty forlorn. I told my spouse and he immediately wanted to argue the points of if my grandfather was passing or not. I really probably should not have told him at all. It's hard to believe that this is the same man who was crying over a dead mouse this morning. I'm having some difficulty staying "detached". Think I'm going to pack up and head home towards the end of the week for a last goodbye with my grandfather and hopefully that will be soon enough.

[Grumpybutfun]

tinktronik:

I am so glad you are reaching out to a support group. After reading your thread, that was exactly what I was getting ready to write to you when you posted that you found one. Honestly, cannot even begin to understand what you are going through, but these people deal with the same things and may have resources, an ear to listen when you get tired, and comfort when he is hard to be patient with.

 

I am sorry about your grandfather. I hope you have a safe trip home, and can find some peace.

Best,

Grumps

[tinktronik]

tinktronik:

I am so glad you are reaching out to a support group. After reading your thread, that was exactly what I was getting ready to write to you when you posted that you found one. Honestly, cannot even begin to understand what you are going through, but these people deal with the same things and may have resources, an ear to listen when you get tired, and comfort when he is hard to be patient with.

 

I am sorry about your grandfather. I hope you have a safe trip home, and can find some peace.

Best,

Grumps

Thank you Grumps for your condolences.

 

The support group is a ray of sunshine.

 

I've really gotten used to saying something about my relationship and having a friend say oh, don't all husbands do that, mine does. But then I tell exactly what happened and they stare at me like I have 2 heads.

 

In the group these people really DO understand and often don't need the details because they are living them too. So when I tell them that I told my spouse my grandpa is dying and he called me a liar instead of offering any comfort they have a decent idea of what and how that happened. I feel comfortable enough that I let forth more of the snarly details that I would usually hold back so as to not have my spouse judged too harshly. It's freeing. I have a knack for story telling that leaves most laughing in the end.

 

They helped me come up with constructive ways to set it up so my spouse could supervise our daughter and I could have an evening away, where I would not have been comfortable doing so before. It involved a hotel room, paint and snacks.

 

Sometimes I just want to stay in group forever.

[tinktronik]

Just a quick update. It's been 5 months now since I started posting to this thread and we have been doing weekly sessions with a couple's therapist (which I think have actually made things considerably worse) and our own private therapists as well. I've been doing group meetings for spouses with HFA diagnosis as well. I have made a decision to leave for my own well being and my long-term child's well-being. I'm going to give it a few months to put together the finances to stabilize us both hopefully at least temporarily and slide out of the relationship. I really feel I have put all I can into this relationship in the last 12 years, probably far more than was reasonable, and have received all I ever will from it. I just can't see myself old and grey and still managing life for both of us all the time with the amount of issues my spouse has, sad but realistic. So that's it really. I'm feeling pretty resigned, but fairly firm and have checked out emotionally. I hear from around the block here at LS that once a woman checks out that is the end. I will have a lot of details to work out for our daughter as well and that will probably be difficult.

[Els]

{{hugs}} Tink.

 

We all have to make tough decisions in our life. I, for one, fully support the one you are making now, and I'm glad you are being strong for your daughter.

 

Do take care.

[HokeyReligions]

Oh Tink. My heart aches for you. You have gone so far above and beyond and you show such courage and strength. I know in my heart that your guy would, will and is supporting this choice with all of his true love. He knows that your choice is what is best and one he would make if your roles reversed.

 

Your attitude and approach on this journey are inspiring. What a wonderful role model you are. You should consider writing a book. You are in my thoughts and prayers Tink.

[tinktronik]

Thank you both. This is not particularly easy, and is really quite terrifying. I have spent the majority of my adult life with this man in a relationship that doe not really look or function much like a relationship. I know there is a lot out there for me to rediscover with life in general as person other than a caretaker. I hope it helps me to feel alive again, and happier and healthier myself.

 

I really am deeply worried about what the future holds for my daughter's father. I pray that he can be stable enough to reach out to our child sometimes so that she can know the interesting and brilliant man she is a part of. I wish him more peace in life.

[Thegameoflife]

Hey tink. It's tough going trying to understand the mind of someone with autism. I'm high functioning autistic myself, so I understand the issues you're facing. A big problem your facing is that he didn't learn strategies when he was younger, much like a lot of people with these issues that fall through the cracks. I spent a lot of time learning strategies to communicate more affectively with normal people. Read lots of books, and I studied people interacting. I'll never be like everyone else, so I just act my way through social situations. It works relatively well.

 

I will say that it is hard for me to be married though. Putting on an act when I need to is alright for a short period, but in a marriage it is too taxing to keep it up all the time. My wife sees what I'm like, and I don't always react the way she thinks I should. I know it upsets her that I'm not a normal guy, and I'll probably never supply the reactions that she wishes I would have. This is pretty common for me to experience from others I'm around a lot. Often, people become mentally abusive towards me as a result. The dark side of any mentally atypical person is that they often get abused by people who are in their lives on a regular basis. I'd be lying if I said I wasn't a bit jaded toward normal people as a result of my experiences. I can say it makes me pretty sad to be alone in a world where I'm overwhelmed by stimulus, experience extreme emotions, and everyone who is around me long enough eventually abuses me emotionally.

 

Don't expect him to ever be like everyone else, but I think he can be taught to behave in a tolerable way. If he refuses to improve himself, it wouldn't be adviseable to get dragged down with the problems he's unwilling to deal with. I would say the same though whether his problems were ASD related or just general problems.

[tinktronik]

Thanks for sharing thegameoflife. Your post was very moving. I do think it makes a big difference when there is some earlier life intervention, but my spouse did not have the benefit of that.

 

I think I've come to the point where I have just had one meltdown too many. It leaves my home feeling like a very uncertain place not knowing what or when my spouse will become overwhelmed and act out. It really leaves me feeling heavily stressed and on top of kids and work I manage him more than anything else.

 

I feel like I should be worrying about my cell phone plan, or what to BBQ on the grill this weekend, or if I want to read a new book and instead I spend a lot of time and energy dealing with meltdowns, never knowing what or how to say anything to my spouse, what might get him going, mitigating between him and the kids, the mess our life becomes if neighbors drop by much less if family comes to visit. I've become his caretaker picking up pieces strewn all over the place and I'm burned out.

 

It's really minimized my own life and with all of the other things that go on in relation to AS it feels as if there isn't anything to balance the cost of those things to my life. We've never had an active sex life, by that I mean maybe once a year, there's no hugging or kissing or affectionate glances or flirting.

 

It's like there is a genius of a man that lives in a room in the downstairs of my home and he lives a completely separate life from me and my family. He does not greet as he comes and goes and does not even tell me if he's going, he is just gone. He may leave the door open on his way out letting out the toddler and the dog. If I broach any of these things he just accuses me of calling him inadequate and says I am abusing him. He is only happy when he is solitary ensconced in his head and is angry if he has to leave that space to do anything else like work or help or anything. So I take the large brunt of life on for both of us.

 

Sigh. I just can't see the balance of why to stay anymore.

Edited January 22, 2014 by tinktronik

[whichwayisup]

Very sad for you all. I can see that you adore and love him to death, but I can see the toll all this has taken on you Tink. This isn't about love anymore, it's about a healthy way of life for you and your kids and it's not going to get any easier or change in a good way if you stay and have to cope/deal with this on a daily basis.

 

I hope you find peace soon. You're incredibly strong.

[Raena]

You have been through so much and I really do applaud your for sticking it out this long. You have really put forth every ounce of energy you can into this. You have basically lived in a loveless relationship for 12 years with someone you absolutely adore. I can tell by your posts that it has become more than you can bear. While this is sad, you have to do what's right for you and your daughter.

 

I didn't see anyone else mention this... is your daughter exhibiting any of the same symptoms? She might be too young to tell at this point, if she's still a toddler you won't know until she reaches school age. I'm sure you've already thought about that though.

 

((((hugs)))) I know how hard this is to do but you sound like a very strong woman. You will get through this.

[tinktronik]

I have to ask, why did you not leave him earlier in the relationship due to his behavior?

Sigh. I think the single defining reason I did not leave earlier is that I do not believe he is capable of taking care of himself or sustaining a place to live when left to his own devices. People for years have looked at me strangely when I mentioned this because he is clearly the most intelligent man in the room, but really he is a danger to himself in that he cannot work in his own best interest in any significant way, he does dangerous things like decide to walk home 30 miles into freezing temps in the night, he forgets to pay bills for months sometimes. Early on I can remember the urge to run like heck but I realized that there was a very nice person in front of me who simply could not take care of himself and who had no one in the world to help him. He was sweet and obviously special. No one will offer him help because he either comes across as so incredibly smart that why would he possibly need help, or as a super arrogant arse. Either way there is an adult who cannot sustain an adult life. The last few years I have stayed largely because of the same reasons and that I am terrified that he will get some unsupervised time with our child, who he will undoubtedly endanger.

[chelsea2011]

I've been reading your story and wow just wow. You sound like an incredible person who is beautiful inside and out. You deserve to have peace.

 

I don't have any advice to offer except to say, if your doing it alone already and emotionally exhausted you might as well do it alone without him and be happy right? I hope that doesn't sound harsh as that is not what I intended. I just know how hard a decision like this can be when you truly care about the person. My situation was different, but similar in the aspect that I had to make a choice like that too. As heart breaking as it is right now, you will realize in time that you've made the best choice possible for everyone involved including yourself. There are many resources out there to help you through this situation. You can also request supervised visits through the courts and it will be granted without a doubt.

 

I wish peace on your journey.

[tinktronik]

I think I am making the right decision for myself and my daughter. I was 22 when I got into this relationship and now I'm 34. I've done this for a LONG time now and I really don't want to hand away the rest of my youthful years to someone who cannot appreciate or enjoy them; it's just not fair to me and it never was. I cannot remember a single moment when there a glance or a tender moment in the last 12 years, not one. I deserve that and on top of that I just cannot manage the chaos. I feel bad for him but I've given him the very best I have and can offer and it hasn't done much for him. There is someone out there, probably plenty of someones, that my very best would be great for.

[tinktronik]

You have been through so much and I really do applaud your for sticking it out this long. You have really put forth every ounce of energy you can into this. You have basically lived in a loveless relationship for 12 years with someone you absolutely adore. I can tell by your posts that it has become more than you can bear. While this is sad, you have to do what's right for you and your daughter.

 

I didn't see anyone else mention this... is your daughter exhibiting any of the same symptoms? She might be too young to tell at this point, if she's still a toddler you won't know until she reaches school age. I'm sure you've already thought about that though.

 

((((hugs)))) I know how hard this is to do but you sound like a very strong woman. You will get through this.

 

Thank you.

 

My daughter is almost 3 and I see lots of good signs. She is highly intelligent and already reading basic books, which I would normally associate with a good thing but in this case makes my heart skip a beat with worry. However, she clearly exhibits empathetic behaviors, proper mimicking behaviors, and reads facial cues appropriately and has had great eye contact all along. No spinning or hand movements or rocking behaviors; but I'm told sometimes those may appear later. She is painfully shy though with other children so I'm watching and will just keep it under my hat until she's older.

 

You know strength is something that all of us have when it's mandatory. I feel as though I have been forced to be the strong one, the solid one, the one who gets on with it and makes the world keep spinning. I'm hoping to be able to become vulnerable again, to be able to rely on others sometimes and let someone else be strong for me someday. That seems like paradise to me.