Wednesday, February 10, 2010

The Cassandra Phenomenon

"Counselling for Asperger Couples" Barrie Thompson, Jessica Kingsley Publishers, 2008. ISBN: 978-1-84310-544-2.

Quote, Foreword by Steve Bagnall:

"...Some years ago, when I was working as Deputy Chief Executive of Relate, I received a letter urging us to do more for couples where one partner had Asperger Syndrome (AS). In fact the letter was quite critical of us, so I wanted to respond positively. But it was very difficult to respond positively as most of our workforce had probably never heard of AS."

"...If one partner had AS this was potentially a huge issue for the couple unless they could find successful strategies. At the same time many couples were struggling with this without even knowing it. There was no question of developing a model of how we could work more effectively with couples where one partner had AS."

Quote, Barrie Thompson, Page 55:

"My reasons for drawing attention to this condition, be it termed Cassandra phenomenon or Mirror Syndrome, is to let NT partners who are in plight know that their situation is recognised. It is known that loneliness, anxiety and depression can result when they try to tell people about their AS situation, but they are not listened to or are thought of as being melodramatic or even paranoid. I also hope that family members, friends and colleagues may in the future take notice and be more prepared to hear what 'Cassandra' has to say."

41 comments:

  1. Query, Thank you so much for acknowledging the despair of neurotypicals who care for those with AS.

    I cannot agree more with you. I have a recently diagnosed hubby and suffered years of trauma, not only at the hands of his AS bullying, but by being told by professionals it was all my fault.

    I was driven to attempt suicide. I know now, after the diagnosis what the problem was, but I grieve that I will never have a proper marriage with someone who has such developmental delays in social and emotional understanding. I will always simply be his carer. As he gets older, he is rapidly deteriorating into a dementia-like state.

    Accurate diagnosis of AS is essential. Just as recognition of OTRS is essential. There is ample evidence of the existence of Ongoing Traumatic Relational Syndrome from the work of Professor Baron-Cohen, Barrie Thompson and G and C Slater-Walker, among others, which shows accurate diagnosis assists both parties in the relationship.

    Diagnoses of both Asperger’s Syndrome and Ongoing Traumatic Relational Syndrome does not place the two parties in an adversarial situation but allows relief for both parties and acknowledgement that circumstances beyond the control of everyone has caused the inevitable clash of natural conditions.

    It is imperative that recognition of the existence of Ongoing Traumatic Relational Syndrome is acknowledged by the psychiatric/psychological community, otherwise ignorance and denial by this community will continue to cause great harm to be done to NT patients.

    I am very grateful for the opportunity to discuss this extremely important issue with you. My deepest thanks.

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  2. A serious apology to you, Query. I misread your diagnostic name and must correct the way I have written OTRS. It is Ongoing Traumatic Relationship Syndrome, as you rightly said.

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  3. How wonderful to find a blog acknowledging this serious disorder. I wish this blog much success and I will keep checking in.

    Jacqueline

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  4. Query, I too add a big thank you for acknowledging our plight and dispair, for I am also a neuro-typical (NT) carer of somone with AS.

    Jamtart, I feel for you as I have a similar story. I also have a recently diagnosed husband who bullied me for years, sent me to hospital 3 times, and left many bruises over my body over many years. I too tried to commit suicide. Those bruises have healed but my heart has been left, not only bruised, but very broken and bloodied.

    I too add my voice to call for the recognition of Ongoing Traumatic Relationship Syndrome,which is referred to by its popular name - Cassandra.

    Maxine Aston wrote in her forward to Rudy Simone's book "22 Things A Woman Must know", that "due to the neurological impact having AS will cause, the woman may start to feel her empathic ways are not being reciprocated. She may begin to feel emotionally isolated along with a sense of loneliness, and become aware that something is missing in the relationship. If the reasons for this are not identified then the long term stress this can cause will result in what is termed 'Cassandra Affective Deprevation Disorder'(CADD). Of course, this emotional deprivation is not the intention of the AS partner; it is due to the limitations of theory of mind caused by having AS" (2009).

    It amazes me that this issue of Ongoing Traumatic Relationship Syndrome/CADD/Cassandra is in print in many, many books written by professionals but the message is not getting out to the wider psychiatric/psychological community. The very people that we seek out for help and assistance to our plight. Why do they, when we seek their help, turn on us and tell us that we are making mountains out of mole hills? Or worse still, that we are the cause for the relationship problems and difficulties.

    We love and care for people with AS and the difficulties that this creates in our lives are being ignored, which then, causes us additional harm.

    We suffer twice over. First for the initial relationship difference caused by the AS and NT mixture, and secondly by the fact that our story is not believed.

    My truth cries out for acknowledgement. Thank you Query for allowing my voice to be heard.

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  5. Hi, Jacqueline.

    Proclaim, how right you are. Not being believed because hubby could mask his behaviour so well in public, was beyond awful.

    It was when we got home and he relaxed, that the real behaviour would emerge. His AS would cause tremendous chaos and there was no way I could convince professionals this was true.

    I feel like I have more knowledge of what goes on in my home, than any professional. I live with it. I know what it's like. I am the expert.

    If professionals would listen to me and believe me it would make a huge difference for everybody in my family. The name Cassandra Phenomenon certainly fits. In the ancient myth, she, too, was not believed.

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  6. Oh Jamtart you hit the nail on the head!!!!! That is my experience as well.

    A person's testimony is believed in a court of law. If a person witnesses a crime and tells the court what was seen and heard, is not that person's testimony enough to put someone in prison? Our police and court systems stands on the truthful testimony of witnesses.

    I witness the behaviour of another daily. I report that behaviour, but my testimony is not believed. I ask why?

    I am a professional myself. I am a teacher. I witness behaviour daily. That behaviour is the basis of my written reports. My observations are believed in the workplace, why not in the home.

    Again I ask why?

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  7. Thanks for making this blog.
    I ditto everything above.

    Holmes

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  8. This blog is long overdue. Thanks for launching it.

    I would also like to recommend an online support group for NT women partnered with Aspie men. It's been around for years and is very active. Cassandra is a frequent topic of conversation, and I find the discussions very thought-provoking and insightful.

    http://groups.yahoo.com/group/AspergersAndOtherHalf/

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  9. How wonderful to see Jamtart and Holmes!

    And wonderful to meet Proclaim, Query, Jacqueline, and Anonymous!

    Will add to the conversation soon when I have some time...

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  10. Hi everybody!

    Just wondering if nobody's said anything since March 10th or if I'm doing something wrong when I'm trying to get to the blog.

    If anybody's reading this, please post SOMETHING! :-)

    Hugs!

    Rising

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  11. Rising, Hellooooo. Good to hear from you.

    I, too wondered why such an important subject had gone so quiet. There is enough info out there to support what everyone has been saying. I wonder if there is some way to make this blog more "out there"? I am not very good at the technical stuff.

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  12. The absurdity of my life with hubby with AS was brought home to me this week after a visit to a solicitor to have our wills updated. The solicitor hammered me verbally, for an hour and a half as to why I had certain clauses inserted to protect my estate for my children from a previous marriage. My hubby has no children.

    I told the solicitor straight away about hubby's ASD and how he had no exceutive functioning. How he would immediately find another carer as soon as I was gone.

    I broke down, crying and shaking, under the solicitor's relentless badgering and after an hour and a half of sticking to my guns I finally had what I wanted. I made sure the solicitor knew I had been merely a carer for hubby for the twenty years of our relationship and how it was a marriage of convenience; an economic alliance.

    The solicitor then stated how quiet hubby had been and started to question him about his life. The solicitor's comment was that hubby didn't seem to have anything wrong with him.

    I looked him straight in the eye and told him to come and live at my place for a day. The solicitor's returned gaze told me he "got it". He then asked what "executive functioning" was and I explained, along with a story of neuological disorders being wrongly labelled "mental illness" in the courts. I left shaking, feeling traumatised and angry.

    Hubby sat through all this grinning. He told me he could see I was upset. I told him all he had to do was say that what I was saying was true. His shaking head and denial did not help at all. I felt hubby had hung me out to dry to keep his appearance of the charming, intelligent "man of the world".

    I had to fight hard, but I achieved what I wanted and I realise how strong my distrust of hubby is. I do not trust him to keep his word at all.

    This is another example of how Cassandra is treated by the legal profession. I suspect though; the solicitor will be more wary when he has a client with ASD and a NT partner in the future. At least I hope so!

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  13. Rising from the AShesJuly 17, 2010 at 1:15 PM

    Jamtart,

    I just checked this blog for the first time in a long time. So glad to hear from you! So sorry to hear what a hard time you're still having with your AS husband, and what a hard time you got from your lawyer (that's what we call 'solicitors' here in the United States).

    I'm so proud of how you handled yourself with him! You go, girl!!! :o)

    I just wrote to Karen and asked her if the FAAAS BB is ever gonna be working again, because I miss everybody. I asked her if she was in contact with anybody (I specifically asked about you and Holmes). And then I checked this blog and read your April post and am writing back (a mere three months later)! LOL!

    I'm sure the pony express was quicker than this! :o(

    Hope things go better for you, and that FAAAS gets the BB running again!


    Hugs,
    Rising

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  14. Hello Jamtart, Rising, and others,

    What a relief to read what Query wrote! Acknowledgment!

    I saw this post earlier this year. Have bookmarked it. Have been unable to write, and still feel so.
    So much has happened and am still recovering.

    I hope FAAAS will soon be up again! Will certainly look forward to that!

    Sunbright

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  15. Wow! Is all I can say! A Couple of years ago I wondered what was wrong with me. Bipolar? Depression? Anxiety? Feeling unloved? Suicidal? My husband of 8yrs was then diagnosed with AS as well as my 7yr old son. I wanted to 'escape' but couldn't out of the love for my family. I have since found a phycologist who is trained to help people with AS. But what about me? With her help I have learned to accept the fact that I will never have a proper marriage. I have been trying to convince myself that I am not crazy. Now I'm ready all about this and am so happy to see that I am not alone.

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  16. The differences between the neurotypical world and the AS world are profound: as different as night and day.

    Our shared humanity is what connects us as mutual inhabitants of planet earth. It is a given, that just as generalisations cannot be made about all AS people, then generalisations cannot be made about all nt's.

    However there are basic attributes of brain development that are common, yet mutually exclusive, to the two formations of brains.

    There is a severe problem of denial among some members of the AS community towards the need for intervention, assistance and genuine useful psychiatric help for some of those people with AS. Just as some NT's also need psychiatric assistance at times.This denial is extremely unhelpful and causes even greater problems.

    There is obvious evidence of a lack of listening to NT family members about the difficulty encountered with their neurologically different family members.

    The truth about anyone's psychological difficulties must not be glossed over and pushed aside to avoid a perception of a labelling of a whole group of people.

    The categorising of these differences as a "war" between AS and NT's is blatantly ridiculous. We NT's live with, care for and share our lives with AS people. This couldn't happen if we were at "war" with them.

    The terrible tragedies of school mass shootings is a clear example of how the system has let some families down; of how professionals and groups with vested, unhelpful agendas have stopped any meaningful progression towards possible prevention of these incidents. We must listen to the families of the perpetrators. They have much to teach us.

    Because one rogue AS person commits an atrocity, it doesn't mean that all AS people WILL react the same.
    AS mindblindness does not serve the debate well.

    Unwillingness of lobby groups, professionals and the political community to accept the truth, does not serve the debate well.

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  17. The truth of the extremely poor response by mental health professionals to the reality of family stories must surely border on mal-practice.

    Are the professionals only interested in protecting their turf? The nature of an evolving professional career includes changing and modifying theories in the light of new evidence. It took 5 centuries for the church to be dispell the "flat-earth" theory.

    We must listen to the cries of the mothers and fathers of the slain children and adults and to the cries for help of the mothers of disturbed individuals. We must not deny the truth.

    Some individuals with neurological/developmental disorders, under the right circumstances have caused terrible tragedies. This is a fact. The world must be willing to consider alternative forms of mental/neurological health treatment. It's obvious the current system does not work.

    It's time for the experts to speak out about what they know in their hearts. Their reputations are in tatters anyway and their credibility is zero.

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  18. Interestingly Barack Obama has included an Executive Order that mental health aspects of gun control be improved. The powers that be know part of the issue is the behaviour of some individuals with AS and perhaps other neurological disorders.

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  19. My son was diagnosed 9 years ago with AS tendencies. However we only really notice is some of his social interactions. I have raised him with love and affection and he has much empathy towards people can express affection and tells me he loves me everyday. Had I not known about him I may never have found out about his father. I knew he was "different" while we were dating. He was not capable of intimacy like other men I had dated.After we married I began noticing how forgetful he was. To the point that I thought he may develop Alzeimers. After we had our son things got much worse. I began getting sic and came down with CFS Fibromyalgia(which I now know seems to be common in these relationships.) After our daughter was born things went down hill further. He would not take my advice financially and would insist on controlling everything. There was no affection or ever taking personal responsibility about anything. I found that I was basically trapped in a marriage with a man who never matured emotionally beyond the age of 15. He put us in many dangerous situations..when ever I expressed concern I was called paranoid. I started thing everything was my fault and became physically and emotionally drained. I spoke to a Psychiatrist about this and he directed me to research Marriage to an AS partner. I am now going through a divorce with this man and my attny does not even seem to believe me. Our children have no respect for him and our son calls him a hypocrite. When I try to help him with his relationship with our children or when our children confront him he blames everything on someone or something else. I feel so sad for our children and now know why I felt I was going crazy all of those years. He now resents me because I was ill and keeps bringing up,"What I put him through". As long as he is in denial and blames everything on me and everyone else he does not have to look at himself. The frustrating thing for me is that people who have met him only a few times cannot imagine what he is like. He is also passive aggressive and has been diagnosed with ADD. It is really frustrating when people who barely know him condescendingly invalidate me. Why is it that people think you are making things up? Especially when I have known him and have lived with this behavior for 20 years. I truly can validate 'Cassandra Phenomenon" . I literally have all the symptoms and my children are suffering as well. It was wonderful to find out about this but as mentioned before I would not do this again ever. I am thankful for my beautiful children but my heart is breaking for them. I would not wish this on anyone. I would love to be a case study for this "Phenomenon".

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    1. I really understand what are you talking about!
      I can put mine signature under your words!
      Describes my life, and my relationship with a man I am married to for 17 yrs! We do have 5 children. Oldest is 16, youngest is 7.
      I live in a different world than anyone else! I even do not tell people what my life is like - they won't believe me.
      My 2 older girls have an emotional problems, and the oldest is seeing a Christian therapist, that helps her with her struggles.
      I see the same therapist once in a 2 weeks, and she started to encourage me to separate from him.
      But I just can't! He has no one in this state, but us. He won't even know how could I've done this to him, because he doesn't see anything bad that he is doing. He is not aware how much his behavior and attitudes hurt the rest of us..
      Not even my family realizes how bad things are. I would have to be completely on my own in separating from him, because my relatives won't be supportive.

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    2. I have a severe case of ME/CFS Had to stop working ( sole wage earner Pres of Revlon) that's when we lost our lives and all sanity He took control of finances and we lost everything even the right to rent a small apt ( screwed the IRS). We are still legally married He lives with the crazy mother he did not speak to for 25 years and I am in a long term e hotel getting sicker by the day. I knew not to bring children into the marriage but I had no clue he was capable of killing me literally . I never told anyone We are married 35 years and it's a nightmare I lost things I did not know I had like memories and family traditions of my beloved mother and father Ironically I got my PhD in clinical psych to help others
      We had enough money and security for two life times I was a strong confident woman who was not afraid of anything His made chaos out of everything I have never told anyone

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    3. JoAnn, It's very sad what living with someone with AS does to us.They marry us for the way we can enrich their lives by using us and our talents. Then they suck all that life out of us mentally, emotionally and physically. It's terrible.

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  20. dear anon, What a dreadful tale of two decades of abuse. What you've described is so accurate for everything those neurotypical people who live with an ASD family member will experience. By speaking out with others you're helping the truth to come to light. There are several websites related to information for people in your situation. The faaas.org site, www.theneurotypical.com and a Danish site for those people who in non-English speaking countries. Word is getting out there. If you check those sites every now and then any current research will be announced.

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  21. Parents with children on the spectrum are acknowledged for the great difficulties they face in their family life. Children of parents on the spectrum are acknowledged for the great hurts they have felt during their childhood.
    Why are spouses of those on the spectrum not acknowledged for the neglect, confusion and pain they feel everyday as a result of their relationship problems?

    The ASD is not magically cured after the wedding bells toll. Masking, play acting and charming behaviour by the person on the spectrum is used to ensnare a social guide and this behaviour quickly disintegrates once the bell tolls.

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  22. it is time to get this conversation going again. There is plenty of evidence that siblings and children suffer when there's ASD in the family, then why should spouses experiences be ignored by the medical psychological community?

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    1. I agree with you!
      From what I experienced, physiologists are not trained to help families of ASD. TEACCH Center, where my husband was dianosed, provides help only to him. Even than - there is 6 mo wait for an appointment for a therapy, after diagnosis! He on the list since June 2015 !
      I was there with him when he was diagnosed. i asked if we can have another meeting, and bring all our children so they can hear from a professionals about ASD, and get some answers. Respond was: "We cannot do it. We provide services for ASD patients. If he would request that, we can accommodate."
      Thing is that ASD people by definition are not caring people.. My husband is very self-centered.
      I was disappointed that they do not provide services for the whole family, just for a person with ASD, and very limited.

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  23. Val, This is an extremely annoying aspect of how professionals really have no idea of how ASD affects all the family, especially the neurotypicals. The person with ASD is quite happy and because of their mindblindness don't understand there is something wrong.

    It is mal-practice as far as I'm concerned. You will be the one needing most help, along with your children. Therapists seem to either be doing one client treatment on the person with ASD or whole family together, which is never successful.

    There's no understanding of the differing needs of the generations nor that the NT spouse will be needing much more support due to the impact of their OTRS from living with a spouse on the spectrum.

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  24. OMG, I'm so glad I found this blog. I'm married to a undiagnosed Asperger's husband. He is on the very mild side, but has a high degree of alexithymia. I have been struggling emotionally and have recently had a break down. It's so hard when they do okay in friendships / casual acquaintances, but lack the ability to emotionally connect to an intimate partner. No one else is privy to what I have been tormented with. My health both physically and mentally have taken a hard hit. I fit all the symptoms of OTRS. The information I've recently come across makes me happy and relieved on one hand, but now the incredible decision of whether I can handle this type of relationship for the rest of my life, or if I care to. I moved out of the house recently with no real response from him . . . Oh, he organized the house while I was in an apartment. . . I did move back in. I try to explain to people that everything in my relationship is good, but the one essential thing an intimate relationship needs is missing in mine. Another problem is that I have searched and searched for some sort of support group / therapist / anything to help me heal, but nothing exists out there. It's like the twilight zone. Looking for support!

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  25. I was a single mother to 3 girls - one with ASD and one with inattentive ADHD and NF1 for 10 years when I met my Aspie partner just over a year ago. At first I attributed a lot of his behaviours to relationship inexperience and Asperger's - he is at heart quite a kind soul. However after 6 months of monthly ASD specialist counselling as a couple I find myself exhausted in the relationship and questioning the wisdom of both the counselling and my psychologist who urge me to stay and be patient as he grows up. I'm very patient but quickly becoming worn out with patiently and unemotionally explaining my needs to watch them be ignored repeated. I'm not sure he will be able to change and if this is who he is then that is who he is.

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    2. My heart goes out to you. With your life situation (raising three children) it would seem that having your emotional needs met and emotional support would be high on your priority list in a relationship, not raising another child. I've been in a relationship that has drained me and I've recently had an emotional breakdown / spiritual awakening (in the words of Brené Brown). I'm doing much better now. With relatively young children, who also need emotional needs met by a father-figure in their lives, can you afford this relationship? I ask this with the utmost respect because I know how difficult giving up a relationship where so many other things are great can be. Your situation seems similar to mine in that you may have the same concerns that I'm faced with, which are: 1. Can you get this emotional reciprocation from other sources? 2. Will he ever be able to fulfill your emotional needs? and 3. If he never can fulfill your emotional needs will it be "good enough" for you to have them fulfilled by support groups / girlfriends / family . . .etc.? http://www.cyquest.com/pathway/index.html This is a site that has helped me heal my wounded emotions. I hope everything turns out for the best for you. Hang in there.

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  26. ITS BEEN HIGHLY FEMINISED AND IALMOST THAT OF PROFESSIONAL VICTIM STATUS IN THE CASSANDRA COMPLEX...
    VERY NASTY FROM THE POINT OF VIEW OF A MAN WHO HAS SUFFERED ABUSE MOSTLY AT THE HANDS OF WOMEN WHO UNDERMINE REALITIES COLLECTIVELY AND WITH SOFT VOICES AND THEN HISTRIONICS..
    THE CONCEPOT IS PSYCHOPATHY,,,NO AMOUNT OF BULLSHIT WILL DETRACT FROM THAT...
    AND THOIS HAPPENS TO MEN AT THE HANDS OF WOMEN TOO, THE ANALOGY OF THIS BEING APOLLOS FAULT..IS ABSURD AND FLAWED FREUDIAN METAPHOR..

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  27. Tarquin, the reason this debate is highly feminised is because historically almost all of the research on ASD has been carried out on only males. It's a recent phenomenon that women are being recognised.
    When someone has deficits of brain development, which is what ASD is, by definition, there is obviously going to be misunderstandings.
    Abuse and highly defensive so-called "justifications" for immature behaviour are
    unacceptable on this blog.
    The problems of life with someone who is mindblind, lacks context understanding and impulse control are REAL. jamtart49

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  28. If you are currently in or have been in an adult intimate relationship with someone on the autism spectrum there's a survey being conducted of your experiences on www.theneurotypical.com or at faaas.org

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  29. Hello again, everyone...it has been a long time since I last posted.
    LIFE has a way of interfering. Hopefully this blog will begin to draw attention as the NT-aspect of NT-AS relationships is accepted and recognized by Medicine. As jamtart49 posted there is a survey specifically for NT spouses posted at these two websites. The need for NT spouses to be part of the 'conversation' regarding relationships and AS is so apparent.

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    1. Has anyone else noticed Donald Trump's autistic, psychopathic, narcissism? It's obvious to anyone living with a spouse/partner who has ASD.

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  30. I have been in a relationship with man who has Aspergers for over twenty years. He was diagnosed about 3 years ago. I'm sure that I suffer from OTRS after many years of living with his abusive behaviour and lack of emotional support of any kind. I've tried to get help for myself from the Mental Health department of the N.H.S. twice, once before he was diagnosed and once after, all I got for my trouble was a misdiagnosis of borderline personality disorder and the prescription of anti depressants which were of no help to me whatsoever in fact I think they made things worse in the long run. I think it's high time the N.H.S. started to recognise this condition and offer some help and support to the partners of people, women and men, who have Aspergers. After my nonpartner was diagnosed I was offered no information or advice on how to cope better with his abusive behaviour, even though I'd told my own doctor about his very angry and abusive behaviour. We're all just left to figure things out for ourselves with the help of other people who have been living the same nightmare as ourselves. I'm glad to hear that the Marriage Guidance service is starting to take account of the problem of Aspergers in relationships because it's a very different problem to that of two N.T. partners who can communicate normally and come to some agreement or compromise about how to solve their problems. With a partner who has Aspergers there's no chance of that ever happening, and we have to give up on any hope of that before we can move on and try to start to reclaim our own lives and our self esteem.

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  31. Many thanks for this blog. Unlike most of the posts, I am a NT man who has been married to an AS woman for 37 years. However, my own experience is very similar to the NT women. I have the symptoms of OTRS. I have sought advice and therapy several times and have not been believed. The professionals I saw just had no idea. I got blamed for a lot by them, as well as by my wife, who now says it is me who is the AS !. She is happiest on her own. She sees no point of any relationship other than reproduction. She fooled me for several years but admits she was acting all along. She even married me as it was the 'least of several evils'. We have stuck together for the kids sake but all the financial and practical support has been mine. My problem now is how do we split up when I provide all the support? The relationship has destroyed me and there are not many years left. I am 73. I am between a rock and a hard place. Not enough money to support two separate homes and lives but staying together, separate but in the same house, is an emotional nightmare.

    I hope this input from a male is useful. My impression is that there are as many males as females in the same OTRS situation but not sufficient evidence?

    Mike

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    1. Hey Mike, your post was a couple of years ago so I hope you are still breathing! If so, we need to talk. I am 70 and have the exact same story as yours with one exception - I started a face to face support group last year. You can reach me on facebook: www.facebook.com/steve.nelson.33 or at mendingfamily@gmail.com

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  32. Hi Mike have you ever heard of a support group called As partners it's a support group for people like us and there are some male partners on the site as well as women. You're right our problems are very much the same.

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  33. Cassandra Syndrome and Autism is unknown in Family Courts. Human Right abuses taking place. ''Cassandra parent identified as abusive and ASD parent identified as ''stable''. Children in dange and violated.

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