Seeking NT spouses/partners

Hello:

I've been in another forum trying to help my ASD hubby make connections in a last ditch effort to save myself & my family. It's last ditch after 26 years of marriage, struggling w/cancer & two special needs young adult daughters. I am however, tenacious & my hope is that hubby will accept the support & suggestions of those in the ASD forum to enable our family to survive. I've been alone for all of those 26 years & need the voices of others w/experience of long term relationships w/a highly ASD affected other half. There is no forum for NT spouses so I've come here. Will those of you in similar positions please introduce yourselves, perhaps just to share your struggle, perhaps to share how you survive day after day? 


  • You write very well, you are a good writer. Reading your article always solves my question. Read Also : [edited by moderator]

  • Whether a party is good for a country or not can only be decided by it's ideology,principles,policies which it implements and by the dedication it serves the country.

    Although , theoretically the central ideology of BJP is 'Integral humanism' but practically it favours Hindus. By mixing religion into politics it covered the great journey …from 2 seats in 1984 to 282 seats in 2014.

    Now ,we are at the watershed moment that we have a full majority government after 3 decades and a Prime Minister of charismatic personality.

    As BJP believes in Akhand Bharat so it will never take the risk of harming Muslims. And PM also believe in “Sabka saath sabka vikas”. So, here communal nature of BJP can be ignored.

  • There have been slight changes over the years. He used to be very verbally aggressive & routinely made fun of people. This has diminished & he no longer directly targets me this way. See the long article I posted above (sorry - should have copied the link instead). Hubby really hasn't changed - my capacity to be made non-existent has.

  • Nope. I think there are aspects of his ASD, perhaps PDA, that make it difficult to comply w/requests - even those in his own best interests & that there are coping strategies to help the anxiety around this. He knows quite a few that he has always used as part of one of his interests that I believe he could try applying elsewhere. There's lateral application here that may enable him to succeed.  

    Absolutely I dismissed it. It was hard not to, battling the very visible nausea & pain from the cancers & his need for me to just stop being so sick so I could attend to him. I thanked him as best i could but frankly, this is how it's always been. He's quite mind blind to super, super visible events - blood, heart attacks, crying, stenches, dangerous situations - but when he needs attention he needs attention, no matter the circumstances. I've jumped up from dreadful & visible (to others) crises many times to give him support, applause, you name it. He does not do the same for me. I'm glad he was able to say it. Sorry he chose to do it while he was 100% blind to the practical help i needed at the time. It's a frustrating dilemma & much of what I'm hoping for are rote things regarding serious health & safety issues. 

    Song, I'm unsure if you're a NT spouse or not, but it's often gentler to not assume bad intent. Language is so blunt. For the record, I have cared for & protected my spouse for 26 years w/distinct compassion & extensive efforts to understand his anxieties & what binds him, particularly since his family abandoned him. He is not a monster, as I have often said to those who judge him negatively by his actions, but he does have ASD which seriously impacts the safety & well being of his family. I was, b4 the cancers began eating me alive, a special needs teacher w/multiple degrees including a MA, specializing in dual diagnosis adults. I do not fault my husband, my ASD daughter nor my profoundly special needs child for their conditions. What I do expect from any human being is the effort to be better, to find ways forward & to challenge themselves. To me, the difficult part is a) part of ASD can be the inability to accept diagnosis & b) resistance to change - to a point that harms self & others.

    I have compassion but I'm also a suffering human being on my last legs hoping to find others in a similar position for encouragent & support.

  • Has he changed or has he always been like this?

  • So do you believe that he is just being a pain by not being able to do the routine?

    one night he said, "thank you for staying married to me." I'm afraid it fell rather flat.

    So the one time he managed to do something that you would recognize as making an effort which if he doesn't normally say things like that would have been huge for him, involved a huge amount of internal dialogue and plucking up courage you just dismissed it?

  • More like survive in less pain & with less damage rather than save a marriage. It's not & never has been a marriage. I'm hoping that in interacting w/others on the spectrum he may finally actually accept his diagnosis 1st. He's been diagnosed twice - 10 & again 6 yrs ago. I hope that may motivate him to follow some actions & keep some standards to make daily life safer & more liveable. For example - our profoundly special needs child needs a routine to follow. Wake up, eat, meds, activity, lunch, meds, activity, etc....Hubby will not follow any routine & I am too ill to continue myself. Food is served - or was - 3x a day w/snacks & liquids between for the children & me. I'm too ill. Hubby will not do this as he eats minimally & infrequently. So should we apparently, even tho my dietary needs have increased as the cancer progresses. Just an example, but a potent one. And Hubby "works" from home so it's no time stretch. That's the kind of thing I hope, in the company of others w/ASD who have chosen to find ways to meet needs of NT partners, hubby will choose. So far, Hubby says he's gotten some such advice in the forum & that he is following it. I haven't noticed any changes, except one night he said, "thank you for staying married to me." I'm afraid it fell rather flat.

  • I've been in another forum trying to help my ASD hubby make connections in a last ditch effort to save myself & my family. It's last ditch after 26 years of marriage

    Hello what is it that you are hoping to happen to your husband to save your marriage?

  • Thank you for sharing. Wish you all the best, please take care of yourself too. :-)   

  • Thank you Frankie. I too have an adult child on the spectrum as well as another w/profound special needs. My spouse is more severely ASD affected than my elder child. The issues we face are multiple as you suggest but it is the voices of NT spouses I sought & nothing else. Perhaps the below article might be understood by others in such long term relationships. For the record, I have sought assistance for my spouse, our marriage & our now adult daughter for decades. It does not exist where we live & neither our vast library of ASD resources nor my masters degree in special education or years of teaching vulnerable children & adults has helped. What has helped me & we now hope will assist hubby & by extension, our family, is the encouragement & understanding of those in the ASD community here. However, I genuinely believe & have experienced, that it takes another in an ASD/NT relationship to provide support to similarly involved NT individuals. That's why I posted in the hopes of finding them. Thank you for your intervention Frankie. Perhaps the below article will cast some light on part of what many long term NT spouses face, keeping in mind that while in our home country there are limited resources available for children w/ASD, there are virtually none for late diagnosed adults & literally none for those in ASD/NT marriages.

    Married with Undiagnosed ASD: Why Women Who Leave Lose Twice

    Author’s note: A caveat before we get into the substance of this article: couples counseling with a skilled therapist can greatly help couples in which one partner has the symptoms or diagnosis of autism spectrum (ASD)/high-functioning autism. This article describes the path followed by many women whose husbands are not diagnosed and who did not have successful couples counseling support to help them understand their differences. I write here about heterosexual married couples because these are the couples I see most frequently in my practice, where most often it is the man who exhibits the characteristics of ASD. This is not meant to imply only heterosexual couples face these issues or only men can have problematic ASD.

    When a neurotypical woman is married to a man who has the behaviors associated with autism spectrum (ASD), several things typically occur. Over the course of her marriage, she experiences herself as gradually disappearing. In the place of her former self emerges a person she barely recognizes. She is so lonely. So hurt. So … angry. She feels isolated, as her social connections have gradually diminished. She feels misunderstood by everyone who knows her, so she has learned not to talk about her “problems.” She starts to feels crazy. She also feels guilty, because her husband is a good man.

    This result can be seen in the following modified example from my psychotherapy practice:

    A woman in her mid-50s came in for her first appointment. She seemed unsure of herself, eyes downcast, behaving as many women do when they first arrive. I recognized the familiar look of bewilderment, explained by others before her as wondering whether they are going to make sense when they begin to speak, of whether I will view them as whiners, or whether they may be wasting my time.

    Before taking a seat, she handed me her curriculum vitae. Many pages long, it was heavy in my hand.

    “This is who I used to be,” she said.

    At a glance, I could see that among other things this woman had successfully argued a case in front of the U.S. Supreme Court. Sinking into the chair in my office, however, she appeared too meek to look me in the eye as her tears began to form.

    “I think my husband has Asperger’s. I don’t know, though. Maybe it’s me. Maybe there’s something wrong with me,” she said. “We have been married for 20 years. I don’t mean to say anything bad about him. He’s a good man. But I need a divorce. And my children think I’m a crazy person.”

    Then the tears came in earnest.

    “It’s such a relief to be here. People don’t believe me. I stopped talking about this a long time ago.”

    I have seen this many times. On one occasion, a woman told me, “My husband has Asperger’s.” Then she began to cry, could not stop, seemed uncomfortable for not being able to compose herself, and left the office without uttering another word.

    There are women who work with me for several months and can still feel blindsided when something comes up at home that they misinterpret from a neurotypical (NT) perspective instead of considering the implications of ASD. They continue to be surprised at the gap between themselves and their husbands. The pain they feel when they recognize this gap catches them like a stab to the stomach.

    What has happened to these women? It’s difficult to see the process while it is going on, just as it is difficult to see the effects of water drops on granite minute by minute. But changes that are negligible day to day are incontrovertible over the long term. With time, granite that once held the characteristics of a unique natural form is visibly reduced to a smooth, monolithic surface.

    What has happened to these women? It’s difficult to see the process while it is going on, just as it is difficult to see the effects of water drops on granite minute by minute. But changes that are negligible day to day are incontrovertible over the long term. With time, granite that once held the characteristics of a unique natural form is visibly reduced to a smooth, monolithic surface.

    Instead of drops of water, women married to men on the spectrum are struck by pain from unrelenting moments of being reflected inaccurately in the place they look most often for reassurance: the eyes of their husbands. And over time, they begin to interpret what is reflected to them as a reliable representation. They try to alter their own perspective, their own aspirations, their hopes and dreams, to bring them into line so they are consistent with the way their husbands treat them. The lonely process of love and guilt and shame rips them apart.

    It starts like this: a man on the spectrum (most often undiagnosed) marries a woman for all the qualities he admires, but once the wedding is over, those very qualities become the things that spark the most unsettling experiences for him. She is outgoing socially, has interesting things to talk about, and is engaged in intriguing professional activities. She is well-regarded, confident, and kind.

    For her part, she finds his thoughtful attention and his stability comforting. She is also drawn to what she takes to be his reticence. She admires his ability to maintain his focus so intently and to be so successful in his work.

    To a man on the spectrum, however, living with a person who has these qualities may be predictably uncomfortable. Where he seeks equilibrium in order to feel he understands the world around him, she seeks—and represents—novelty, as a result of the very curiosity that made her the woman he initially admired.

    His constant anxiety related to living in what feels like an alien culture is soothed by predictability. This would be facilitated by the presence of a partner who complies with his view of reality. This is not because he sets out to manipulate her. It is because his fundamental concepts are threatened by hers. His anxiety grows with his fear of doing “something wrong” because he is never quite confident about what the “right thing to do” might be.

    From her perspective, his thoughtful attention may have disappeared the very day of the wedding. He quickly became self-involved and aloof. The stability she admired slowly shows itself to be profound inflexibility. The reticence does not point to the underlying wisdom she assumed was present; she now sees that it comes from his not knowing what to do or say. And his inability to focus on her has come to mean she exists outside his field of interest, where he is apparently content to relegate her.

    MOMMY’S BIRTHDAY DOESN’T MATTER

    We can look at birthdays to explore the dynamics common to interactions between partners in an ASD/NT couple. When he does not acknowledge her birthday, and she asserts that his behavior has upset her, he may respond that he did not mean to upset her; therefore, she shouldn’t be upset. Or he might tell her that because birthdays come once year and everyone has them, they are no big deal and she should stop making such a big deal about them. Or he could tell her they celebrated her birthday last year. Or that birthdays are for children. In other words, he may hold her to the same idea regarding birthdays he holds himself. He may criticize her to the degree that her feelings about birthdays differ from his. He will miss her distress.

    As a result, she doesn’t have the opportunity to celebrate her birthday, something which is generally understood as a common social convention in our culture. She also feels rejectedby her husband over the belief her birthday is worth noting in the first place. She asks herself why such a little thing as a birthday seems so important to her. She wonders whether she is being juvenile, as he suggested. She sees he doesn’t care one way or another about celebrating his own birthday, after all.

    She decides he is more mature than she is and attempts to comply with this idea of “maturity” by trying to ignore her own birthday. It doesn’t work. All her friends and family members mark their birthdays in some way. She sometimes has to explain to them why hers was overlooked. On occasion, she makes up stories about her birthday so people won’t feel sorry for her. She feels rejected, as well as foolish for being immature.

    Overall, she is sad and lonely, still wondering why she can’t seem to make a point on her own behalf that she’d enjoy at least a card acknowledging her birthday, even though birthdays may not be important to him. But over time, she has learned further discussion is hopeless on a subject like this. She won’t say anything else about her birthday. She has learned such a conversation isn’t a discussion at all. It feels more like a pedantic correction of yet another one of her stupid ideas. And it will leave her upset, possibly in tears, with nowhere to go but inside.

    She continues to celebrate his birthday. She makes certain the children’s birthdays are acknowledged and celebrated. She is now operating from the notion that her own birthday is a nonevent. It does not get mentioned because she does not bring it up. Her children, even though they are young, are noticing mommy’s birthday doesn’t matter, however. Daddy’s does. Theirs do. Mommy’s doesn’t. They do not understand it is Mommy herself—and without help from Daddy—who makes all the other birthdays happen. By complying with her husband’s view of things, however, in order to avoid the pain of being criticized about it once again, she has taught her own children that Mommy’s birthday doesn’t matter.

    It is fair to wonder why a woman can’t decide to celebrate her own birthday on her own terms, regardless of what her husband thinks about it. In most cases, this would be a valid point. When ASD is present, though, the calculus is different. She can celebrate. She can bake a cake. She can buy herself flowers and even make reservations to go to dinner that evening. If she does, however, her husband’s attitude will be clear to her and to the children, whether he says anything with actual words or keeps his silence. It will be obvious to all concerned that he does not approve. He will comply to a minimum degree. He will participate begrudgingly. He will damn with faint praise. He will stonewall, which means he will say nothing at all, when she suggests (even mildly) that he participate. She has become accustomed to his stonewalling, which Dr. John Gottman, relationship expert, believes can kill a relationship because it denies communication and denies opportunity for the relationship to grow.

    THE CHILDREN ARE WATCHING

    The children are watching everything, interpreting it from their limited perspective and understanding. Mommy isn’t thinking of this at the time. She is not thinking the children learn how to treat their mother by observing the way their father treats her. She is operating on the assumption her children know her and love her and they see she is a good person. She is unaware that negative lifelong attitudes toward her are being formed in the young minds of the children she loves so dearly, and that these attitudes can come at her later to hurt her every bit as much as the behaviors she suffered from her husband, their father—the very behaviors that instilled these attitudes in the children in the first place. She is not thinking about the fact the children will likely remain unware they hold these subconscious notions regarding their mother, regarding how to treat her, regarding what she “deserves.” They watched how their father treated her. They learned. As adults, they may ignore their mother’s feelings and question her judgment, just the way Daddy does.

    She is also unaware that in doing all the work and providing all the energy toward celebrating Daddy’s birthdays and the children’s birthdays, she is showing the children one more example of taking on both roles, Mommy and Daddy. She does it because it is important to her, for example, that the children’s birthdays are celebrated. She wants them to have fun. She wants them to have one special day a year that is all about them. She sees this as normal.

    Daddy doesn’t agree, so he doesn’t participate.

    Mommy does it all, from the planning to the present buying to the cake decorating, at home or at the bakery. She chats with all the parents who bring their own children to celebrate. She cleans up after the party. She is exhausted. She says so. Her husband may respond by saying, “Well, you’re the one who had to have this big party! You asked for it.” He may not help with the cleanup because, well, it was “her idea to have the party.”

    The children are watching as Mommy cleans up and Daddy retreats to his study. If they get wild or misbehave, a distinct possibility after having the house full of friends and their tummies full of birthday cake and ice cream, it will be Mommy who has to enter the fray and settle things down. If she’s tired and feeling lonely and rejected by her husband, she is at her least resilient point, and she can snap unintentionally at the children. She looks like the bad guy, the parent who is “always angry.” This is how it may seem to small children.

    The children are also susceptible to misunderstanding another basic fact they observe regularly. They see Mommy being strong. They see her as the one in charge of all the daily life of the family, and of all the extras (such as birthday parties, ballet lessons, soccer games, play dates), and they wonder where Daddy is. Because the reality of the situation is impenetrable and inaccessible to the children, they may create their own narratives. They may believe Daddy is a good man, yet Mommy seems to want to do everything. They determine this is because Mommy has pushed Daddy aside in order to control everything herself. Mommy doesn’t let Daddy help. Poor Daddy! Mommy is really mean.

    TIME TO MAKE A CHANGE

    The years go by. The children go off to college, graduate, create their own lives. Mom couldn’t be more proud of the young people they have become. She decides she can no longer survive the relationship with her husband, however. It is not unusual for women to leave these marriages once the children are at least in high school, but often the marker is when they leave the house for college. This is not an easy decision for a woman. In fact, it is brutal. And it often makes no sense to anyone who is looking in at the marriage from the outside, including the couple’s children. She must give up everything in order to save her sanity. Yes, it has come to that.

    This woman has lost a partner, lost a marriage. She has also lost her dreams, her hopes. She has lost her fundamental sense of who she is. She has to mourn these losses. She then has to heal. And she has to re-create herself.

    The woman by this time may have few friends, few confidants. She has learned to refrain from discussing her marriage difficulties, because the friends she has have always seen her husband as such a “nice guy” and because he is undeniably a good provider. She stopped trying to talk about it because she got tired of hearing “all marriages have problems,” she is “expecting him to meet all her needs, which is impossible for any one person to do,” and she is “misinterpreting things.”

    When she finally does go through a divorce, she discovers it will take her years to sort things out. She will think she is doing well immediately afterward because it feels so good to be free from the constant state of stress and criticism. This can be exhilarating. But gradually, she learns it is a phase. And it reveals a miscomprehension of how much healing she really has to do. During this time, before she reestablishes her new self, she may do things that seem rational and make decisions that seem logical. However, it is in looking back from a vantage point of several years after her divorce that she is likely to begin seeing just how separated from her true being she was during these years of healing, and of how much more healing she had to do, and still faces.

    This woman has lost a partner, lost a marriage. She has also lost her dreams, her hopes. She has lost her fundamental sense of who she is. She has to mourn these losses. She then has to heal. And she has to re-create herself. It can take a decade or more to sort these things out and to become strong on her own. If she enters into a relationship with another man before she gets her bearings, she is likely to face additional confusion until the dust settles. This is not to be dismissed as the normal post-divorce phase of a woman’s life. It is an epic battle for reconstruction.

    A NO-WIN SITUATION

    By this time, the children see her differently. She is the woman who did not deserve to have birthday parties, remember. She is the woman who appeared to have pushed their father aside, so he was unable to be part of their daily lives. She appeared to have been the one who rejected him, and who instead of involving him in their lives, inserted her own agenda and goals. She is the one who spent all the money, because she had to manage everything and make all the decisions without her husband’s input. She is the one, most importantly, who broke up the family. Her selfishness caused the divorce, and the children were left to sort it all out.

    Dad is the victim. Mom is the witch.

    Mom has given her life to be both mother and father to the children because their father, on the autism spectrum but undiagnosed, was incapable of being involved emotionally and practically in the daily lives of their young family. Patterns were established. Mom continued to give. She finally left the marriage for her own sanity. She loses her marriage, her husband, her intact family. She appears to be the agent of the demise of the family, but she is not, because in running from abuse (regardless of the fact it was not necessarily intentional), she is running from a burning building in order to save her life. A fire set by intent, an accidental fire—what’s the difference to the person inside the house who must flee if she wants to live?

    The woman loses again when she begins to understand her children treat her the way their father always treated her. They don’t respect her. They keep their distance. They blame her for everything they ever felt was wrong in the house when they were growing up.

    The woman coming out of an ASD/NT marriage loses twice. She loses her husband and she loses when her children treat her the way their father treated her.

    And to attempt to tell her story to her children is wrought with landmines invisible to her and unimaginable to the children. She feels she cannot convey the reality to them, regardless of her attempts. And even after all these years, she does not want to disparage their father, because she understands ASD is not his fault. She still treads carefully, even though he is unlikely to extend the same grace toward her. The children do not see this. Too much time has gone by. Too many patterns are set. They see only criticism of their father if she mentions she had to heal, or that she had to rediscover who she was after the divorce, or that she may have made decisions in the early years following the divorce that were not ultimately consistent with the person she now knows herself to be. She is, once again, judged and criticized—this time by the very children she exhausted herself to nurture.

    If she is fortunate, she has found a good therapist along the way. She has had the opportunity to talk without feeling crazy. She has cried the bulk of her tears, though they still come when she thinks of her children, of how she loves them, of how unfair this has been to them, to her, to her former husband.

    She has herself. She has friends. If she is fortunate, she has learned to re-create herself in such a way she has a career or an involvement in the community that allows her to experience herself in her competence and to be acknowledged by others as a person worthy of attention, worthy of friendship, even worthy of a birthday party.

    Postscript: This article is a composite of what I have seen in my practice over the years among neurotypical women who have emerged from marriages with men who exhibit the behaviors consistent with a diagnosis of autism spectrum disorder (formerly called Asperger’s syndrome, high functioning autism). As a psychotherapist, I work with ASD/NT couples. I work with individuals affected by ASD. I work with women who are or were married to men with ASD. My role can be described as that of an ASD/NT translator, essentially, and my goal is to help both partners understand the world as seen from the other. By writing this, I do not mean to disparage or judge anyone. This article reflects my experience as a therapist, and I offer it here in this form to help women understand that their experiences are valid as well as to help their friends and family members understand what these women have been struggling with—and what they may well continue to struggle with for some time to come.

  • While I agree that you might find the support you need in a professional setting I don't agree giving such a negative response is acceptable.  I am not married to a ASD husband.  It seems difficult to find support for NT individuals married or for the parents of ASD.  I would like to think your situation is not a one of and someone may see and offer you some advice and support.  I am also sorry you feel alone but I don't think it is your husbands intention.  As a parent of an ASD child I find that I feel alone.  My relationship with him is at times very distant vs my NT son.  I have to remind myself that my ASD son is unable to respond to what I feel.  I would encourage you to seek professional help for your family as it sounds like you have a lot more then just the ASD issues.  I do hope you can find someone/ group with people in a similar position, or someone with experience with an ASD spouse might be of some help. I think it is great that you are making every effort to find support.  I do wish you the best in finding the help you need. 

    F

  • Thank you Elephantintheroom:

    I do hope there are others in NT/ASD relationships in the forum able to provide words of support or wisdom & hope to hear from them. As you must know, there is little to no on-the-ground therapeutic support for ASD/NT couples. Nor have I asked for such intervention in this forum. I'm sorry that you are uncomfortable having a married couple here but for the life of me don't understand why that would exclude me from seeking communication w/others in similar relationships. My spouse is successfully seeking guidance in the ASD forum & I am seeking it here. As you also must know, ASD/NT relationship issues are not solved or helped by simply urging those involved to be "the best humans" they can be. We are. Frankly, i am hurt by this reception & hope others come forward. I didn't expect to be rubbished, rejected or invalidated here.

  • Dear TT

    May I politely suggest that you and your partner seek professional relationship counselling rather than seeking guidance on the NAS forum. 

    I for one am neither a trained counsellor, marriage guidance operative and am self proclaimed as being rubbish at relationships. 

    Personally, (as I can only speak for myself), I find the situation uncomfortable with both parties on the forum, unable to give support which causes me some distress but sincerely wish the both of you the best going forward and urge you both to try and be the best humans you can be. 

    Ellie x