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Position Statement on the Cassandra Syndrome

February 3, 2009

For Immediate Release [first published on February 2, 2009]

The public sociology advocacy project, The League to Fight Neurelitism, supports the application of United Nations values concerning human rights and social justice to all autistics. We also recognize that, in the absence of adequate societal enablements, the stresses involved in interacting with some adults on the autism spectrum can, at times, become overwhelming.

On a personal note, I am myself a diagnosed Asperger’s autistic, as was my father. After I received, like many other Asperger’s autistics of my generation (baby-boomers), a diagnosis of childhood schizophrenia, I was rediagnosed with Asperger’s autism in April, 2007. Subsequently, through my own efforts, my father was diagnosed as an Asperger’s autistic in January, 2008, which, as it turned out, was only eleven months before he died.

As a child, my father was, in his engagements with me, both physically and emotionally abusive. Indeed, his destructive behavior would, today, likely result in an incarceration. The overriding factor, I believe, was our mutual social ineptitude. Our personalities sharply diverged, and neither one of us quite knew how to relate to the other. Given sufficient supports, and correct diagnoses, these problems might have been averted or, at least, ameliorated. Regrettably, the Asperger’s autism category was not formally recognized by the American Psychiatric Association until 1994.

A term which has been suggested for the problems confronting the family of an autistic adult is the Cassandra syndrome. The designation is intended to highlight the intrafamilial complications arising from the alleged failure of some Asperger’s autistics to respond to others in an emotionally affirming fashion and to exhibit common sense in their social encounters. These family members, it is claimed, may, as a result, feel rejected by the autistic individual and experience a degree of lonliness.

The League to Fight Neurelitism does not deny that such difficulties may be present in many families, and we certainly have no desire to minimize the pain which some persons experience. Many autistics have experienced considerable bullying throughout their lives and are, perhaps, more accustomed to emotional hardship than the majority of individuals. On the other hand, we feel that to construct these issues in terms of a psychological syndrome is counterproductive.

For one thing, the Cassandra syndrome is not a recognized diagnostic category. It, therefore, joins a long list of popular psychological labels, including Peter Pan syndrome, kundalini syndrome, and Cinderella syndrome. For another, rather than attempting to remediate the socially disabling conditions confronting the autistic, and to simultaneously support each family member, the Cassandra syndrome futher marginalizes the autistic as the victimizer.

Furthermore, The League to Fight Neurelitism recommends posing and responding to a sequence of relevant and, hopefully, fertile questions. One of these could approximate, “How might all family members contribute to the enablement and accommodation of the autistic individual?” A more encompassing inquiry, intentionally phrased not to single out the autistic person, can be, “How should the activities and responsibilities of the family be readjusted to favor the unique skill sets of each member?”

Finally, the League believes that tolerance, acceptance, patience, and inclusiveness are the most potent means to address the dynamics of family conflicts. Negatively labeling the autistic with a concocted syndrome is unnecessary. Families can deal cooperatively with the issues they encounter, utilizing outside help if need be, without blaming and stigmatizing the neurologically different individual.

Respectfully submitted,

Mark A. Foster, Ph.D.
Founding Director,
The League to Fight Neurelitism

Published to http://cassandra.neurelitism.com

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12 Comments leave one →
  1. Cassandra of course permalink
    March 14, 2009 1:54 pm

    “How might all family members contribute to the enablement and accommodation of the autistic individual?”

    to quote you… was your first statement and by all accounts of any Nt in an AS/NT marriage or relationship the crux of the problem. The NT will bend over backwards to the point of illness to accommodate and try to make things work while the AS will merely “think” they have done something and expect praise and admiration.

    While many of you are so willing to cry foul in your blogs and pretend that there is no way you have created the females who are being given this label just proves how unable you are to look at the whole picture, empathize and where you can take responsibility for your actions.

    The second statement , whereby both parties must take action to accommodate each other’s needs is commonly NOT understood by an AS and is probably not even understood by yourself. Leaving the house, going about your business, getting lost in work, neglecting the supposed loved one, nor even writing a blog about is accommodating their needs.

    It is that very lack of understanding and action and compassion that wilts the NT. Yes there should be more help available for proper diagnosis and therapy and couples therapy so that two people who love each other can live together.

    Until that is available, surely you must be an advocate for autistics, but do not minimize the extent of my having been changed from a vivacious, sensual, happy, loving, athletic, healthy,wealthy, bright, articulate, fairly socially adept human to being melded and moulded to accomodate an autistic adult into exactly the opposite of who I am for the sake of a one sided relationship.

    Was I a victim? In that I was chosen/profiled as a choice according to the weaknesses and needs of an AS individual who wanted a mother rather then a spouse, I do feel victimized! I lived a life of servitude and isolation in order to accommodate him.

    Even now, he barely notices I am gone , is healthy and still calls me his wife even though I am no longer. He calls to ask me to do his laundry and never once said he missed me. He is on a robotic myopic mission he calls life. Nothing has changed really.

    I, however, have lost all my friends and social support, have chronic illness and a nervous disorder and may well lose my house because of the financial ineptness of the person who was supposed to be my partner in a relationship.

    The deprivation of basic human needs was NEVER on the table for the AS person, as the NT does the bulk of the basics in the home and oft times at work as well, and almost certainly with the children. Yet the NT person could be on the floor dying or in labour and the AS individual would walk over them to get to get to the computer.

    Where were my human rights in that marriage. Not responding to facial or visual clues as well as lack of empathy can be frustrating, but lacking recognition of life-threatening clues is frightening.

    I have heard AS people state often that only physical abuse is a reason to leave a marriage. There is often physical abuse and more often mental abuse. The Cassandra syndrome means our friends, therapists and others see the brilliance that is the shiny thing to distract them from our very real protests and we are not believed!

    You may be shying away from the “syndrome” but it will eventually be recognized and it is quite simply as important for this to happen as to have society recognize and try to understand and help those on the Autistic spectrum.

  2. March 14, 2009 11:03 pm

    I would never minimize anyone’s problems. My late father was, like myself, a diagnosed Asperger’s autistic. However, his diagnosis occurred less than a year before he died. The social dynamics of having two aspie autistic in the same family, and some other family members with different sets of problems, made our family hugely dysfunctional.

    Therefore, my concern about the “Cassandra” movement has nothing to do with denial. It relates to assigning to the aspie, whether explicitly or not, the status of “victimizer.” All families have their problems. IMO, the problems which may be associated, in some families, with the presence of one or more aspie autistics should be resolved through a focus on social dynamics, not by blaming.

  3. Cassandra of course permalink
    March 15, 2009 9:55 am

    I will not repeat myself as you have done, only more succinctly this time. The speaking in circles hoping an Aspie will eventually ‘get’ it is a huge problem. You will never “get’ it because you are wired to think of yourself and hunker down and circle the wagons rather then listen.

    That you speak of focus on social dynamics, not blaming, I find interesting. The blame that you speak of is very real. The husband with Aspergers blames the wife, the friends blame the wife, the people at work who see this “nice” person blame the wife. My sister and some of my family who see only his good side, blame the wife.

    The wife eventually blames the wife and will withdraw from those people who do not understand and now her needs are now not only not met by the husband, but also from all they are exposed to.

    I was in a battered relationship before this one and know that like many others, I was chosen for my strength for having endured it and for my weaknesses for having endured it. The relationship with an Aspie was far worse. I have never felt more alone and deprived and quite honestly, abused.

    We are the ones who seek therapy, not the Aspie, because they ensured all of their needs were met. For you to say you are not denying, yet try to compare a marriage to an Aspie to a normal marriage is entirely in denial. Besides having to deal with the usual men are from mars, women are from venus issues, we are dealing with man from Pluto who CANNOT UNDERSTAND the dynamics of a relationship to meet the needs of another.

    Most Aspies are well established in the workplace having found jobs in fields of interest and are considered brilliant. However, social interaction they deal with outside of the home is a facade, a charade that is taxing for them and their home is where they need to relax and be themselves. Being entirely themselves is the CRUX!

    Aspies learn to understand the social dynamics by rote, but cannot sustain a marriage unless they have help. How many Aspies seek help? they just place the burdens on the NT. Those of us who did not get help require understanding, healing and therapy. How are we going to get it if we are also misunderstood by the therapist? Why do you think this syndrome has been borne? We are seeking some validity that it was not all our fault!! We are seeking ways to heal. Many are seeking ways to remain with the one they love!

    I spent yearsgiving and giving in to in a one sided marriage and feel like a failure, when it was not my problem. The Aspergers is not something that can be fixed or changed. I became ill, literally, from the burden.

    I am in no way attacking your need for validity of your Aspergers and how it effects your life, but you must also come to terms with the fact that the spouses or SO’s require more help and it IS BECAUSE of the ASPERGERS!! You can call it blaming you, call it victimizing, c’est la vie, as Aspies often do not understand or listen, but rather make false or blanket statements that suit the moment.

    We are the housekeepers, house maintenance, child rearers and unpaid caregivers and Mental Health workers in the home. Notice how I did not say wife as that would mean there was a family, sharing dynamic involved, but the wife aspect was ink on a registration form for most of us. Until you are able/willing to grasp that, you really should not have a say in how we seek healing.

    • L. Jarrin permalink
      November 2, 2009 9:22 pm

      All you say is so incredibly validating. Write the book. Please. You’ve got the words and the fire. If I could, I’d give you the biggest, warmest hug. You deserve it. And so much more.

      Good luck in everything. And I hope you heal soon.

      Lea
      (ps. I wrote a comment below addressed to you as well)

      • November 7, 2009 7:01 pm

        Thank you. 😉 The book is already written:

        http://narrative.markfoster.name/

        I just need to find a publisher.

        Mark

  4. March 15, 2009 7:56 pm

    Actually, I think I am a very good listener, or so I am told by my family, my friends, and my students. However, it appears to me as though you have not listened to what I have said. Instead, you have judged me through the prism of your stereotype of aspie autistics.

    If you re-read what I wrote, you will see that I acknowledged your difficulties. I also stated that I have the experience of growing up in a hugely dysfunctional home with two aspies (my father and myself) and certain other family members with different sets of problems.

    My father, a diagnosed aspie, physically and emotionally abused me as a child. I discuss that in my autobiography. He also emotionally abused my mother and, quite literally, drove her crazy. I would go so far as to say that the stroke which began the long, downward spiral in her health was likely a product of my father’s behavior.

    I acknowledged your pain in my first response. However, your response to me was prejudicial, and it seems to have been based on your experiences with your ex-husband.

  5. Listener permalink
    March 27, 2009 5:31 am

    Being a NT wife in the AS/NT relationship, my heart is going to Cassandra Of Course as I can trully emphasize with her comment. I live through this myself on a daily basis, and only know the hurt too well. Far away from being demanding in day-to-day situations, it does really affect me in critical situations, when you need his help and support but he just cannot and does not give it to you. Even then, his needs are more important. You know that you can never count on your AS spouse in a difficult situation, and soon enough you find yourself in a vicious circle of despair and helplessness with no friends at your side. Thank you, Cassandra, you’ve described it very well.

    However, I would also like to note to you, Mark, that you do seem to be a good listener, and you do acknowledge the pain of NT person in the relationship, there is no doubt about it. But for NT people like us, understanding means empathy. And this is where the difference lies. Yes, you understand intellectually, but you do not empathise as we would expect ith. And this signals a difference to the NT person. Understanding without emphaty is not true understanding from our perspective. It is like with my husband. When he understands, I am still not sure what it means. He understands but he will not do anything to help. He just understands. But for me there is no way to verify it or be sure, and the worst is that it does not change anything.

    As far as Cassandra syndrom, I do not see it as victimisation of AS person. We all know that AS person does not think in the same way, does not try to hurt his loved ones on purpose or does not have any bad intent. But unfortunatelly, the NT family member will still suffer ill effects, mentally and sometimes even physically through ill health. I do not myself like the name “Cassandra”, it sounds a bit too pretentious. But the words Affective Deprivation Disorder describes it very well. And it is a disorder, just like anxiety, panic attacks and other similar conditions, because you cannot really shake it off without going through some kind of a therapy. I think, that close family members should be acknowledged and treated alongside AS person whenever the diagnosis is made or even suspected. I think it is important to draw attention to this to insure that our needs are met and rights are protected too. I think, it should be studied more, described more appropriately and correctly and addressed more swiftly so that we could also get help quickly and efficiently. And certainly not ruled out straight away as some kind of attack on AS people.

    • March 27, 2009 7:42 pm

      >>However, I would also like to note to you, Mark, that you do seem to be a good listener, and you do acknowledge the pain of NT person in the relationship, there is no doubt about it.But for NT people like us, understanding means empathy. And this is where the difference lies. Yes, you understand intellectually, but you do not empathise as we would expect ith.<<

      Speaking as a sociologist, your comment is essentialistic. That is to say, you are discussing categories, “AS” and “NT,” as if they are essences (objective and concrete realities). From my standpoint, there are no such things as aspie autistics and NTs. Both terms refer to social constructions. In fact, psychiatry is the only branch of medicine which has developed a classification of conditions (a nosology) which is not directly related to clear biological causes (etiologies).

      You have claimed that I do not empathize like you “expect it.” However, since you do not know me and are only reading my words on a page, there is no way you could possibly know that. Therefore, instead of responding to me, you are responding to the social construction of Asperger’s autism which you have apparently accepted, i.e., to a stereotype. In fact, recent research has indicated that there are degrees of empathy among persons diagnosed with Asperger’s autism. Some aspie autistics have very little empathy. Some have a great deal.

  6. goodfriend permalink
    June 21, 2009 11:48 pm

    I have a question for the wives (or x-wives) of the AS…I have a very close friend (like a sister) that I believe has AS. I see her struggles but when she “breaks down” to me over her marriage, which is not often, she referrs to him as spoiled! Her husband is in therapy for depression, but I am wondering why he is not been diagnosed with AS. After researching somewhat on the internet, I feel convienced that this is the issue! Any help from the friend of the wife of the AS perspective?? Thank you!

  7. goodfriend permalink
    June 21, 2009 11:49 pm

    CORRECTION:…sorry, I meant that I my good friend’s HUSBAND I think has AS…

  8. CanadianBroad permalink
    February 10, 2010 10:51 am

    “From my standpoint, there are no such things as aspie autistics and NTs. Both terms refer to social constructions.”

    Wait, what? What does that mean, “there are no such things”? Are you denying the existance of Autism Spectrum Disorders in toto? Or are you trying to say that *any* social construct that involves a diagnosis is invalid?

    After all, one could make the argument that any disorder that causes behaviour that falls outside “the norm” is just a “social construction” and therefore does not exist.

    Perhaps in another society, it could be the norm for people to perform sexual acts in public. That is not “the norm” in our society, and therefore exhibitionists are marginalised and criminalised because of a social construction that says those things are private and not to be shared with anyone else without their consent. Are we “elitist” to impose those rules?

    Honestly, you may as well dismiss a pedophile as a “social construction”. Who, besides “the normals” of our society, says sex with kids is “bad”?

    And a paranoid schizophrenic, as well. After all, “hearing voices” used to be a sign that one was touched by the gods, and blessed, and etc.

    Am I an “elitist” to think that these people require treatment if their behaviour is frightening and/or harming others?

    If people with ASD are not diagnosed and treated (helped to fit in with our society’s expectations) they most definitely can frighten and/or harm people. If they are diagnosed, they are “labeled”. And others are informed by that “label” what to expect, and often how to keep themselves and the person with ASD safe and more comfortable.

    “Sane”, “stable”, “normal”: These are words used to describe where an individual falls along a continuum from “absolutely non-functional” to “super-human”. There are indeed very, very few people who fall at either extreme of that continuum. But the farther out from the middle an individual is, the more they need help developing coping strategies to help themselves have happy and productive lives and help them maintain the relationships in their lives.

    To call anyone an “elitist” for noting that human beings do not have equal abilities to function in the society they were born into is counter-productive. To call for an entire society to adjust itself to accommodate the few is to point out and highlight these differences. And to try to shame an entire population on behalf of those who are different is what? Oh, right, “elitist”.

    Am I “better” than someone who is diagnosed as having Asperger’s Syndrome? Well, that entirely depends on what type of measurement you are taking. I am (based on probability) likely to be much more sympathetic, empathic, socially comfortable and outgoing, better at using language, and more comfortable expressing affection verbally and physically. I freely admit, however, that when it comes to other areas, “Aspies” can (and often do) blow me right out of the water.

    But … (and this is a rather large “but”) … my abilities at social interaction, cultivating and maintaining relationships, active listening, and interpersonal affirmation are likely to make my life much less rocky than an understanding of higher order physics is.

    Pediatricians and neurologists (note: not psychiatrists) are often able to diagnose an Autism Spectrum Disorder when a child is only a few days old, now. This is why there appears to be an “autism epidemic” (as I have heard it referred to). Earlier and better diagnosis leads to better and earlier treatment. Which not only benefits the individual, but benefits society as well.

    I can understand your dislike of being labeled “different”. I also understand that dealing with a stereotype that comes with a label can be very frustrating. In fact I am dealing with a couple of labels myself, and it is annoying. However, to flat out deny a difference exists is not going to help anyone at all. Not you, not me, and not other people diagnosed with an ASD or their families.

    • February 14, 2010 3:44 pm

      –Wait, what? What does that mean, “there are no such things”? Are you denying the existance of Autism Spectrum Disorders in toto? Or are you trying to say that *any* social construct that involves a diagnosis is invalid?–

      In my view, categories, like Autism, do not “exist.” That does not mean that they are not useful ways of making sense out of our experiences.

      —After all, one could make the argument that any disorder that causes behaviour that falls outside “the norm” is just a “social construction” and therefore does not exist.—

      I would agree that diseases do not exist per se.

      –Perhaps in another society, it could be the norm for people to perform sexual acts in public. That is not “the norm” in our society, and therefore exhibitionists are marginalised and criminalised because of a social construction that says those things are private and not to be shared with anyone else without their consent. Are we “elitist” to impose those rules?–

      No, societies have a right to impose sets of rules upon citizens. Otherwise, they would fall into anarchy. That does not mean that one set of rules is necessarily better or worse than another set of rules.

      –Honestly, you may as well dismiss a pedophile as a “social construction”. Who, besides “the normals” of our society, says sex with kids is “bad”?–

      In the context of modern-day societies, pedophilia is harmful to children. However, I would not project that norm back into the past (when marrying children was quite common).

      –Pediatricians and neurologists (note: not psychiatrists) are often able to diagnose an Autism Spectrum Disorder when a child is only a few days old, now. This is why there appears to be an “autism epidemic” (as I have heard it referred to). Earlier and better diagnosis leads to better and earlier treatment. Which not only benefits the individual, but benefits society as well.–

      I prefer to look at Autism and so-called neurotypicality without placing value judgments on them (better or worse).

      Cheers,

      Mark Foster

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