# Need direction to right place for help



## Trying my best (May 2, 2010)

I've been faithfully married to one man for 25 years. It has not been easy. Lately, I've been wondering if he might be a high functioning PDD-NOS. Here's why:

He doesn't like passion. Too much touch is overstimulating/unpleasant to him. Intercourse is rare - I want it, he's reluctant. French kisses he can't take or give. We had intercourse while trying to make babies. I think since the birth of our last baby, we've had intercourse maybe a handful of times - 16 years ago. I always have to ask for it. He acts like it's a chore.

He rarely touches me. I am rarely held or hugged. He's been like this since the honeymoon which he spent sitting alone reading a book for hours at a time, in between trying to keep me company. He does try. Or did. Now I think he just wants to be.

Poor to low eye contact.

Topics of conversation cannot include emotion to be processed by him. It has to be factual or funny. Anything that requires an emotion to understand/sympathize with he simply is lost. It's like intimacy - soul to soul connection with anyone - is a foreign language to him.

The sweet nothings men are usually so good at? He has no idea where to begin. I used to say "say something sweet to me." He'd literally stammer. Then say something that always fell short because it is so general as to be meaningless, as in "That was nice." 

He needs to sit in a rocking chair everyday so he can rock himself. When we met, and were starting to date, I didn't have any rocking chairs in my place. He'd rock himself in a stationary chair. 

Emotion - I'm pretty sure he feels less complicated ones - anxiety, anger, liking, disliking. Love? I would like to think he feels that because I'm married to him, but I have to be honest. He never thinks to say so unless I say so. 

He likes the house to look so perfect all the time - he puts a lot of pressure on me to keep it looking perfect. We're talking no one must live here it looks so perfect all the time. I'd have to bury myself alive to accomplish that standard. 

He is happiest when alone.

I do love this man. But marriage to him is becoming unbearably lonely. I'm losing the resilience I had when I was younger. The empty nest is looking very bleak to me in terms of love being expressed at all in my life. I have considered suicide on several occassions from the lack of human touch. Divorce is not an option. Affairs are not the way I'm wired. 

I would like to know if I'm right about him maybe being a high functioning PPD-NOS and if there are support groups for spouses like me. Everything seems to be for parents of kids with PDD-NOS.


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## Blanca (Jul 25, 2008)

Trying my best said:


> I have considered suicide on several occassions from the lack of human touch. Divorce is not an option. Affairs are not the way I'm wired.


divorce is not an option but suicide is? i know your H has problems, but there is something very off about your logic, too. maybe you should start focusing on what your problem is and stop obsessing over his.


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## Sydni (May 1, 2010)

Forget Blanca, thats crap. There is nothing wrong with you to want a normal marriage. You got married to be with someone, not be alone which is where you basically are. I can't imagine how hard it must be for you.. It takes a strong person to hold a marriage together for that long when a man will barely touch her.. Stay strong and I wish i could help with some advice but it just seems to be who he is. You cant change that... I hope you find that support group.. and best wishes. Btw, suicide is never an option. It would hurt friends and family ten times more if u were to off urself than to get a divorce.. maybe you could try couples therapy or even just therapy for you? Sooner or later ull need to tell ur husband about ur suicidal thoughts.. Best wishes..


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## Trying my best (May 2, 2010)

Sydni said:


> Forget Blanca, thats crap. There is nothing wrong with you to want a normal marriage. You got married to be with someone, not be alone which is where you basically are. I can't imagine how hard it must be for you.. It takes a strong person to hold a marriage together for that long when a man will barely touch her.. Stay strong and I wish i could help with some advice but it just seems to be who he is. You cant change that... I hope you find that support group.. and best wishes. Btw, suicide is never an option. It would hurt friends and family ten times more if u were to off urself than to get a divorce.. maybe you could try couples therapy or even just therapy for you? Sooner or later ull need to tell ur husband about ur suicidal thoughts.. Best wishes..


_ You got married to be with someone, not be alone which is where you basically are._ Precisely. I am affectionate and demonstrative in personality, I want a soul-to-soul kind of intimcacy with him, so this has been really hard. I did have doubts about marrying him. But I chose to. Now I have to figure out how to keep on.

About 5-7 years into our marriage, I told my husband "I'm so lonely. I'm so intensely lonely." I didn't understand why he went on as though I had just said, "Nice weather we're having" because at the time I had no clue that maybe there was a disorder here. I did sense something wasn't quite right, but I looked first to the usual suspects in our society, like depression, stuff like that. It's only within the last few months I've read about PDD-NOS and thought, "that fits."

If I'm right about the PDD-NOS, he's high functioning. The signs are all there I think, but it takes living with him to piece it together. It took me 25 years of confusion and bewilderment. His family joke and tease him about "how he is" but they've never given me a clue if they have a clue. I think they know there's something different about their son/brother. They've told me how he had to sit in a rocking chair and read for hours and hours, that his dad interpreted that as laziness. His sibs have complained to me about how he doesn't communicate with them. 

I've already told him I've been suicidal because he acts - on a daily basis - that he'd be happier without me. Did that about a month ago. It helped. He reassured me he does want me here. However, his contribution to the conversation was without emotion. It was factual. No words of being cherished have ever come my way - unless they are cued openly with me saying, "I love you." I think he follows a script there, like mimickry. 

Then reminded me he wants the house to look perfect at all times. Same conversation. I'm not complaining. I'm just describing how he reacts to conversations that for most people would include an emotion. With him, it's factual. Every crisis in our family that was filled with worry, I have to handle alone. There is no strong shoulder to lean on. Ever.

As I've said, 25 years of this is wearing me down badly, but I'm not a quitter. But I do need practical information on how to cope with loving and living with a man who may have PDD-NOS. There's very little here in terms of what other people are used to getting back in their love relationships. Very few verbal and nonverbal cues that he's connecting with me, so it always feels like he's disconnected. Even from the kids. They ask "why doesn't Dad like hanging out with us?" 

The kids and I are not the only ones who notice that he's different. Most people think he's abnormally calm. That amazes his colleagues. I've been getting questions since we were dating "is he really that calm?" What's really going on is he's cut off. 

Thanks for your kind words. And for listening. I'll keep looking for a support group that offers the specific help I need. If I am right about my husband having PDD-NOS, then this is not his fault. But I do need to find people like me so as to get that understanding and support, so I don't feel so alone. I need someone who understands "he never holds you?" and "he acts annoyed if you come into the room most of the time because he's happiest with no sensory stimulation going on?" 
I need a friend outside the marraige who I can have soul to soul conversations with, so I'm not going through life alone anymore. The problem with that is that everyone I meet works with my husband. We work at the same place. It's hard to find such a friend who will support this marriage, let me unload, and not have to work with one of us after. It doesn't help he keeps moving us, so I lose my support system that is outside this marriage on a regular basis.

Blabbed on enough here. I'll guess I'll ask around on one of those boards meant for parents with kids with PDD-NOS - maybe they can direct me to an appropriate support group.

Thanks again. Kind words are exactly what I need. And encouragement.


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## Amplexor (Feb 13, 2008)

So sorry to hear this. 25 years is a long time to live in a sterile marriage. I don't know anything about PDD-NOS but if your husband has been like this the entire length of your relationship with him then you know it won't change. Not without out side help and counseling for him. For your unhappiness seek counseling yourself just to have a venting option and some advice on how to cope. If divorce is out of the question then you should start to get involved in activities that can make you happy. Church groups, social group or even volunteering for a charity group. Get out side the house and develop a life where you do have interaction with people who can show you appreciation for who you are and the talents you can bring. Even if you are in a marriage that as described is devoid of love and support it doesn't mean you cant find happiness in other parts of your life. Good luck.


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## Trying my best (May 2, 2010)

Amplexor said:


> So sorry to hear this. 25 years is a long time to live in a sterile marriage. I don't know anything about PDD-NOS but if your husband has been like this the entire length of your relationship with him then you know it won't change. Not without out side help and counseling for him. For your unhappiness seek counseling yourself just to have a venting option and some advice on how to cope. If divorce is out of the question then you should start to get involved in activities that can make you happy. Church groups, social group or even volunteering for a charity group. Get out side the house and develop a life where you do have interaction with people who can show you appreciation for who you are and the talents you can bring. Even if you are in a marriage that as described is devoid of love and support it doesn't mean you cant find happiness in other parts of your life. Good luck.


_ For your unhappiness seek counseling yourself just to have a venting option and some advice on how to cope. _ 

Thanks. That's why I posted here. I did just now ask for direction to the right kind of support group on a PDD-NOS site for parents of kids with PDD-NOS in case anyone there knows of one for spouses. 

I agree. It's not that he won't change, I think it's more he couldn't change even if he desperately wanted to because he's wired this way. His inability to really connect with others isn't his fault. In a way, it was a relief to find a description of my husband on Yale's site for PDD-NOS -the case study there has many characteristics similar to my husband. That gave me a place to start that felt right for the first time ever. For action, for making something better here.

I do join the groups you suggest, although it's true, I've given up since this last move, (he's talking about moving us again already, life in limbo land). I could try harder there. My work is well recieved, so I do get appreciated there. While these outlets cannot give me romantic love, the kind of love people need from a spouse, they are better than nothing, I agree. 

Thanks again.


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## turnera (Jan 22, 2010)

I'm sorry, but life is too short. If you got shortchanged in marriage (granted, through no fault of his, just how he's wired), then you DO have a choice to leave it.


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## Trying my best (May 2, 2010)

turnera said:


> I'm sorry, but life is too short. If you got shortchanged in marriage (granted, through no fault of his, just how he's wired), then you DO have a choice to leave it.


Thanks. I understand where you're coming from - it would be nice to find love with someone who can show it like I do. 

Right now, I am operating from a choice that I will stay. I mentioned how I tried finding help on a PDD-NOS specific board today. That went well. There I have found people describing their spouses - they sound just like mine. One's directed me to a book on the subject. I looked at the link and the book sounds just like my husband. With this, there is hope. No, I'll never have the intimate connection I long for with a husband. Leaving him because he may have PDD -NOS (and I after my experience on the PDD-NOS board today I'm more and more convinced I'm finally on the right track here to understanding him) is like saying I should leave someone because he's in a wheelchair. The only difference is his disability is in his head. I would hope my love is deeper than that. Or can be. I'm working on it.

But yes, there is a huge void I have to cope with, too. Hopefully, I'll find a way without having to abandon him.


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## turnera (Jan 22, 2010)

Another way to look at it is that by leaving him, or at least telling him you are willing to, you may be able to give him enough impetus to look into whether it IS possible for him to change. It's also possible that, just as he doesn't meet your needs, there may be others out there who may be more compatible for him.

Not telling you to leave. Just making sure you look at all possibilities.


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## Therealbrighteyes (Feb 11, 2010)

Are you sure it isn't Asperger's? I know that sounds off given that he is a grown man and that diagnosis wouldn't have happened as a child 40+ years ago but this term wasn't known until recently. Now it is well known.


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## turnera (Jan 22, 2010)

You know, that's what I was thinking too, but I didnt think I had enough knowledge to say so. We have friends whose son is a high functioning autistic and he has a lot of similar issues.


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## Trying my best (May 2, 2010)

Brennan said:


> Are you sure it isn't Asperger's? I know that sounds off given that he is a grown man and that diagnosis wouldn't have happened as a child 40+ years ago but this term wasn't known until recently. Now it is well known.


Yes, you're right. When my husband was a kid, no one was being diagnosed with Aspergers or PDD NOS. I have friends who's son has Aspergers, and I think my husband is on that spectrum but he doesn't have it as severely as my firends' son. The thing my husband and that young man have in common is a very inflexible "this is where things should go" way of looking at objects. In 25 years, my husband's rocking recliner has to be oriented in the same exact place in every living room we've had - it doesn't matter if that works in general furniture arrangement. Trying something new would make him crazy with anxiety.

That's the thing with Austism, Aspergers, and PDD-NOS - they fall on a spectrum. I know he's not at the austistic end, but he does have a lot of the traits for Aspergers or PDD-NOS. I'm not a professional so I could be wrong. It would be nice to have him diagnosed for sure one way or the other but I don't think my husband could handle me asking him to get diagnosed at all, so to be honest this is guesswork on my part. 

But I really don't think this is all in my head or me making up a reason for a one-way marriage. After yesterday's experience reading about other women's husbands who _have_ been diagnosed with PDD-NOS or Aspergers, I swear they said some of the exact same things I say when I describe my husband. My husband fits right in. As of yesterday, I feel completely reassured that I am on the right track to finally being able to understand my husband better. Which means there are some concrete ways to engage with and be with him. No need for me to feel so unloved and unwanted by him anymore, I can work with this. I'm already using some of the suggestions those ladies made. All in all, you've witnessed a turning point here for me, a good one. Thank you for all your support and encouragement!!!!! The last 48 hours of my life here have been MAJOR. In a good way.


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## Therealbrighteyes (Feb 11, 2010)

Oh yes, there is most definately a spectrum with all of those. When you mentioned the inability to maintain eye contact and wanting to be alone that kind of struck a cord with me. I am beginning to think that my husband has Aspergers. We recently re-connected (I thought) in our marriage in a positive way but I am thinking more and more that it wasn't so much a reconnection of sorts but rather me just letting stuff go that I was unhappy about. The lack of communication, going out, him showing his appreciation of me with a new wedding ring, intimacy that is initiated by him rather than me. In reading about Aspergers it sounds like my husband might be high functioning. Either that or he is just an emotional turnip.


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## Trying my best (May 2, 2010)

Brennan said:


> Oh yes, there is most definately a spectrum with all of those. When you mentioned the inability to maintain eye contact and wanting to be alone that kind of struck a cord with me. I am beginning to think that my husband has Aspergers. We recently re-connected (I thought) in our marriage in a positive way but I am thinking more and more that it wasn't so much a reconnection of sorts but rather me just letting stuff go that I was unhappy about. The lack of communication, going out, him showing his appreciation of me with a new wedding ring, intimacy that is initiated by him rather than me. In reading about Aspergers it sounds like my husband might be high functioning. Either that or he is just an emotional turnip.


_ When you mentioned the inability to maintain eye contact and wanting to be alone that kind of struck a cord with me._

Those two traits, along with needing to rock (while also alone) are _every day_, almost every hour of the day he's home and awake. We have 3 kids. Two of them are away at college. When they were home for spring break, my husband had a hard time staying calm with that slight increase in sensory stimulation. It was too much noise for him. He retreated into a room for most of that time. 

If you're husband has it, )and I'm not sure mine does, but I am starting to think this is a definite for him and me,) and if you'd like to read what some women have written about their experiences with their undiagnosed and diagnosed husbands, the forum I've just found is on iVillage, PDD NOS. If you want to read that. I have found it completely validating. Same username, only with hyphens.


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## Trying my best (May 2, 2010)

Quick update. I have expressed to our children and to my husband what I think is going on. My husband - well, he listened but was doubtful. I forgot and rubbed his arm (as one does when displaying love while telling someone some rough stuff) and immediately remembered that he can't take that kind of touch. I pulled my hand back and apologized. He shrugged. I said, "Hon, I know that to you that sort of touch is makes you feel like someone's screeching their fingers on a blackboard." He agreed, said yes that's true. I said, "Sweetheart, that's one of the traits." I think at that point he maybe thought I wasn't so crazy. Because while we were on vacation with his family recently, some interesting topics came up, mainly around his need for hours and hours of solitude - all confirmed and supported by what his sister said. On a phone call to their mother, I overheard his sister say, "No, he's not getting off alone all the time. I'm not letting him."

See, I let him. Because if I force my company on him, he gets really grouchy and well, it hurts. So, I stopped asking for his companionship. 

Anyway, I think my husband might be realizing that facts are facts. He'll never understand the emotional impact of his behavior on me, though. And I can't ask or hope for him to.

I remembered that when our middle son was a baby, he never lifted his arms to be picked up. Our son has some of these same tendencies, though not to the degree as his father. Our son has the rigid thinking, some lack of social skills, but he has a higher tolerance for sensory stimuli than his father does.

Anyway, that's the update.


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## turnera (Jan 22, 2010)

What's your next step?


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## Trying my best (May 2, 2010)

I don't know if he would consider submitting himself to a diagnostic process. I'm open to the idea, I would love it in fact. It would be good to know for sure if I am right or if he's been an arrogant jerk all our married life withholding so very much from me every day for the last 25 years. If it turned out to be the latter, then with counseling maybe we could have a real marriage afterall. If not - if it's the former - I think professional help would be a huge benefit - at least worth a try. 

The problem is getting him to go to the MD. I will have to be very patient here - I just dropped the bomb of what I think is going on. He can move us from one place to another just fine (because he doesn't bond with people, so he thinks we should be able to cut ties just as easily as he does) but medical stuff is major to him - it's the lack of control he has over the situation I think that makes him anxious (and the only reason I know he's anxious is because when he went in for his colonoscopy, they had him hooked up to a heart monitor. Every time a patient was wheeled by for the next scope, my husband's heart rate sky-rocketed. Outwardly, all our married life, I saw no evidence of anxiety in situations like that. I had no idea. Because he can't show the emotions he has, and he says he doesn't feel them). 

I feel the need to talk - so I hope you don't mind if I drone on and on here. All our married life, I have gotten little in the way of feeling like he was glad I was around. When he woke up from his scope, he looked at me like I was the best thing he'd ever seen. God knows, I was so happy. I was thrilled. I was elated! He was glad to see me! Once he was fully awake, I told him how he had looked at me. He said, "No, I was glad it was over." I said, "but you were so happy to see me." He kept on taking away the joy, kept on telling me it wasn't what I thought it was, "No. I was only glad it was over. " 

See - he doesn't get what was going on with me at all. He didn't understand that even if all he was glad about was that it was over to at least let me feel as though he was glad I was near. No. He had to make it clear that all my face meant was that the scope was over. 

Back to your comments - 

I could suggest he go to the MD today, but I can tell you what he'd say. "I'll think about it." Which is his way of dismissing the idea as unimportant. 

Next step? Right now, I think our whole family is just getting used to my suggestion that PDD-NOS is going on. I'm still trying to process this myself. It's huge. I need to learn more about about the disorder. I admit I'm in shock right now. My starting point when I first logged on here was a 25 year intense loneliness and the first glimmer of maybe why that was - now that's compounded by what the future cannot hold for me. I guess I'm grieving the loss of ever being married to someone who can behave as a soul-mate. 

My husband has taken this a lot better than the kids. But I think that underscores his tendencies which lack emotion of any kind of intensity. He just doesn't feel them. He says so when asked about his emotions. He says, "I don't feel much intensity." Lately, I've been thinking of him as my sweet robot. He really does have a very sweet nature in between the frustration he has when objects are not all in their proper places at all times (frustration he takes out on me with critical, under his breath comments. I get those a lot.)

I think really right now, I'm in shock as much as the rest of the family. Except with my husband, he's not in shock. He's sleeping like a baby as I type.


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## Susan2010 (Apr 19, 2010)

Forget the MD. He can't help except to make a referral if your insurance requires referrals or a prescription for the therapy (whether drugs are required or not). And don't even bother to consider couple's therapy/marriage counseling. They won't have a clue and even if they did, this is out of their area of practice. They need to work with two people who are both willing and able to change and well, you know about that change thing where your husband is concerned. He simply is not able to understand or connect. 

You need the Global and Regional Asperger's Syndrome Partnership (GRASP) to help find out how your husband can be diagnosed and where he would receive treatment or therapy. It's probable they will either require a prescription or a referral, and that's where your doctor comes in. Often times, you need a prescription for therapy for your insurance to pay for it. But first learn where you need to go and what they require so you can tell your doctor.

There are various therapies utilized for adult Asperger's and PDD-NOS to improve cognitive skills, relationships, and hypersensitivities. Some might include a medication but most don't. The best part is you can be taught to use the therapies at home to ease him into tolerance and even participation. You will learn he doesn't always have to be so inflexible. My grandson is Asperger's and although he's only 9 years old, we've had a lot of success convincing or coaxing him to our way of thinking or doing things and without therapy to our advantage to gain his cooperation.

For yourself and your marital relationship, there are two support groups just under this link. This was as close as I could get so after clicking the link, scroll down just underneath for the section on Support for Significant Others. The first is a forum for couples at any stage, and the second is for married couples only.

Finally, your children and his siblings also need to be taught to understand his disorder, and some mending relationships might also be in order. Unless they understand, there is bound to be some resentment or sense of alienation. Talk to his therapist about this because your husband can be taught to better interact with others, and he can attempt to mend those fences.

GRASP can help you find the resources and centers for all of that......and for your son.

Incidentally, in the next couple years (as noted on their home page) Asperger's will be merged as part of Autism Spectrum Disorder. It is likely PDD-NOS will also, so you may speak with some people who refer to ASD rather than Asperger's or PDD.

I hope it's encouraging to let you know my grandson has made great progress as result of his non-intensive therapy. The most intensive area was to improve his communication skills, but not even that was very intense. It was difficult to finally get a diagnosis for him because he is very smart and adaptive in most areas, so he was evaluated several times 2 years in a row. Along with the diagnosis came the recommendation that he be placed in special education. Since he earned all A's on every report card, my daughter was hesitant for fear that he would fall behind in his studies. But, the school assured her he would not fall behind and that special ed would permit his teacher to spend the time on therapies that he required, as opposed to mainstream classroom teachers who have 30 other students to attend to. She finally agreed and it worked out wonderfully, and he was back in mainstream classes the following year. I realize he is a child compared to your husband being an adult. I just wanted to express there are therapies available and to give you hope that your relationship with your husband can significantly improve. Obviously, I make no promise as to how much or what specific areas, but you can talk with his therapist to learn what to expect and in what ways you can help.


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