Ongoing Traumatic Relationship Syndrome/Cassandra Phenomenon (OTRS/CP)
In 1997, FAAAS came up with the term Mirror Syndrome to explain the way NT spouses and NT family members are adversely affected by AS behaviors, especially undiagnosed AS in adults. NT family members, over time, begin to reflect the persona of AS behaviors we live with, 24/7. We are isolated, no one validates us, we lose friends and family, and we feel like ‘hostages’ in our own homes.
A few years later, it was pointed out by a leader in the autism community in California, that we should change the name Mirror Syndrome because of too many ‘syndrome’ references. Shortly thereafter, in 2000, a friend in academia and medicine who understood the issue affecting NT spouses came up with the term Cassandra Phenomenon. This was the term we have used until recently, for the traumatic stress which affects NT spouses and NT family members.
Rationale for “Ongoing Traumatic Relationship Syndrome (OTRS) aka (Cassandra Phenomenon)”
Ongoing traumatic relationship syndrome (OTRS) or Ongoing Traumatic Relationship Syndrome (OTRS) is a new trauma-based syndrome, which may afflict individuals who undergo chronic, repetitive psychological trauma within the context of an intimate relationship. It differs from Posttraumatic Stress Disorder (PTSD) in the same ways as does “Posttraumatic relationship syndrome” described by Vandervoort and Rokach (Vandervoort, D. and Rokach, A. POSTTRAUMATIC RELATIONSHIP SYNDROME: THE CONSCIOUS PROCESSING OF THE WORLD OF TRAUMA Social Behavior and Personality, 2003.) and it differs from the latter in that the trauma is unrelenting.
First, it is logically obvious that a given psychological trauma, when ongoing, warrants at least equal recognition to that of trauma that has subsided. Indeed, as is the case with torture, milder forms of trauma when they are repetitive, ongoing, and of uncertain future duration can cause greater damage.
Among boys, the prevalence of Asperger Syndrome is about 2%. Since AS is a lifelong disorder, then it would follow that 2% of men have AS. Many of these men marry and have children. Among their family members, those who do not have AS, known as “neurotypical (NT),” often experience psychological trauma from attempting to have a close personal relationship with a person who have deficiencies in interpersonal relationships, in areas such as reciprocity, compassion, empathy, recognition of facial expressions, putting themselves in another’s shoes, a constellation of features known as “mind blindness. Challenged in relationship ‘mind blindness,’ AS individuals lack of understanding their own disorder, lack of support to NT/AS families, lack of support and understanding specifically for the NT caregivers. ‘Domestic abuse’ which cause NT spouses to doubt themselves, feel abused, feel oppressed, have stress-related health issues, loneliness, feel unloved, live unfulfilled lives… could be caused by unrecognized AS behaviors…within the home setting.
The situation is unrelenting. It occurs within the home, it and it is often denied by the AS family member. With professional support, understanding, education, information, and validation, NT family members may be effectively treated.
Rosen et al. have suggested that traumatic stress diagnoses are illogical leaps: “Labeling situation-based emotions and upsetting thoughts as ‘symptoms’ is akin to saying that someone’s cough in a smoky tavern is a symptom of respiratory disease.” (Rosen GM et al.
The British Journal of Psychiatry (2008) 192: 3-4.) Looking closely at the analogy, although in smoke exposure is a normal reaction; repetitive, chronic exposure eventually does lead to damage and disease. Yes, cough is a symptom of respiratory disease. Like smoke to lungs, psychological stress in a relationship, when repetitive and chronic, can lead to psychological damage and disease. Without treatment, the damage can be permanent. If a patient suffered from coughing in a smoky work environment for 3 months, a pulmonologist would not deny a diagnosis and treatment until after the smoke exposure ended so that the patient could qualify for “post traumatic smoke syndrome.” Importantly, there is no rationale for limiting a traumatic stress diagnosis to patients whose trauma has subsided. The use of the prefix “post” is not necessary and excludes large numbers of individuals in need of professional help. If anything, those whose stress is “post-traumatic” are less in need of professional help than those whose traumatic stress is ongoing.
The pulmonologist would recognize it as bronchitis due to smoke exposure. There would be no hand wringing over whether the patient is inherently “abnormal” or is having just a “normal” reaction to an ordinary stressor. There would be no thought of withholding the diagnosis for fear that it suffers from “expansion.” Similarly, OTRS does not require any judgment about normalcy. If a stress overwhelms a patient’s psychological capacity at the time, then the stress is injurious; the patient is injured, not “abnormal.” Enormous and growing numbers of “normal” individuals are diagnosed with hypertension and hyperlipidemia, to the point that the majority of the population is considered affected, yet no one has proposed the diagnoses should be abandoned due to “expansion.”
Family members of individuals who have social disorders, such as Asperger Syndrome or sociopathy, generally suffer ongoing psychological trauma. The damage is insidious may continue for decades. If professionals fail to recognize damage produced by chronic, intimate exposure of a neurotypical individual to a family member with an autism spectrum disorder, the lack of validation creates extreme internal conflict, moral distress, loss of self-esteem, frustration, depression, and/or other symptoms, altogether popularly known as Cassandra Phenomenon or Cassandra Syndrome. Cassandra, the Greek mythological character, suffered because her capacity to predict the future was accompanied by the curse that no one believed her. She could foresee disasters, but could not convince anyone to forestall them. By analogy, family members of adults with AS experience great moral distress because they can predict calamities caused by the individual with AS, but they are not believed or validated by the very individuals to whom they turn for professional help.
Reasons for incorporating Ongoing Traumatic Relationship Syndrome (OTRS) parallel those provided by Vandervoort for the related Post-Traumatic Relationship Syndrome. As she notes, “Research has amply documented that there are both short- and long-term mental and physical health benefits when the relationships in which we partake throughout the life span are positive, whereas abusive, restricting and no nurturing relationships have been found to impair mental and physical health.”
Another reason for including is the fact that the consequences of traumatic stress are likely to be “more severe and longer lasting when the stressor is of human design [American Psychiatric Association (APA), 1987, p.247] and that people are more vulnerable to stresses of intimate relationships than those attributable to nature or accidents.”
FAAAS, Inc. 2010
Response to Critics re OTRS/CP
In medicine, the basis for formalizing a syndrome is to identify a constellation of symptoms that occur together in large numbers of individuals under similar circumstances. This is the case for (OTRS/CP) Ongoing Traumatic Relationship Syndrome, which was originally popularized as “Cassandra phenomenon.”
Why would individuals who do not suffer from a diagnosis argue vehemently to block recognition of the diagnosis and its treatment? Most likely, the underlying concern is that individuals with AS fear that NT (neurotypical) family members, who experience distress and mental health injury, might have a legitimate basis for a lawsuit. As they may realize, that is not a valid reason for excluding recognition of a diagnostic syndrome.
Some spokespersons representing individuals with AS have raised concerns that inclusion of OTRS/CP in the DSM would somehow marginalize individuals with AS. This is neither likely nor relevant, in that OTRS is a no-fault diagnosis, and it is not a basis for excluding a true diagnosis. If anything, it would marginalize the neurotypical patient, not the individual with AS. Not all suffering requires a victimizer. If individuals with OTRS/CP suffer, it does not incriminate someone else. By addressing OTRS/CP as a form of psycho trauma that does not require a victimizer, it addresses the perceptions of the individual who is distressed by a situation that they can no longer manage. There is no need to label any other individual. The diagnosis is focused on identifying means for the patient to cope. In many cases, the patient perceives their experiences as being a victim of bullying.
Others have expressed concerns that identifying such a syndrome are unnecessary because families/spouses can take care of their own problems with tolerance, acceptance, patience and inclusiveness.
If a couple can resolve the issues through non-professional means, then the diagnosis may not be necessary; but it is necessary when patients have exhausted such approaches and now seek professional assistance.
OTRS/CP allows professional help for those individuals who have exhausted other means. A formal designation will provide recognition for professionals, allowing them to grasp the group nature of the patient’s concerns, rather than dismiss them to fend for themselves, returning them to the source of their distress.
OTRS/CP needs to be incorporated in the DSM-5, because most professionals did not receive any training with respect to AS and neurotypical relationships, given its very recent recognition. We also agree that there is no need to blame or stigmatize any individuals for having neurological differences. Families can deal cooperatively with the issues they encounter, utilizing outside help if need be, without blaming and stigmatizing the neurologically different individual.
FAAAS, Inc. 2010
Excerpt from “Counselling for Asperger Couples”, Barrie Thompson, Jessica Kingsley Publishers, UK, 2008.
Stage Four: Acknowledging Different Perspectives
I want to conclude this chapter by giving some recognition to a debilitating condition that can be experienced by the spouses of people with AS (often at the hands of family members, friends and colleagues), that is referred to as the Cassandra phenomenon. I think the following quote from the Families of Adults Affected by Asperger Syndrome (FAAAS) website (www.faaas.org/doc.php?40) aptly explains the naming of this syndrome.
I ended up feeling that no one would listen to me and came up with a name for the ‘syndrome’ that affects the non-AS spouse: The CASSANDRA PHENOMENON, Cassandra being the Greek mythological character who was given the gift of prophecy, but also the curse of having no one believe her even though she was right! (Anonymous, Massachusetts, 1999).
It is usually both a blessing and a relief when an NT spouse learns about AS (perhaps from a magazine article or a TV programme) and feels she now has an explanation for her husband’s unusual behaviours. But it is demoralizing and extremely frustrating if the AS husband rejects her theory out of hand. Imagine then, as a next step the NT spouse seeks support from the extended family; ‘Perhaps mum-in-law might be able to give me some childhood history of my husband?’ She optimistically thinks this might help, only to be told quite firmly, ‘There’s nothing wrong with my son, I suggest you look a bit closer to home!’ Not only have the NT spouse’s hopes been dashed with regard to gaining support from her mother-in-law, but the relationship between herself and all of her in-laws has probably now been seriously damaged and even more tension may be generated at home between her and her husband.
Still intent on gaining credibility for the theory that her husband exhibits Asperger-type behaviours, she then seeks the support of people in her and her husband’s social network. The problem here might be that the AS husband (assuming the wife’s theory is indeed correct), is one of those ‘chameleon-like’ people that can fit in reasonably well in certain situations. A typical type of response in these circumstances from the NT spouse’s friend might then be, ‘I think he’s a little different to other men, but I think that’s kind of cute. I don’t think he’s as bad as you are making out.’ Ironically, it may have been the ‘cute difference’ that initially attracted the NT partner to her AS spouse when they first met!
No way forward here, then for our NT partner as people outside the relationship only see a limited part of the AS man. They don’t experience him in an emotional context; they don’t witness his rituals, his routines or his inflexible lifestyle that occur for the most part within the confines of the home. FAAAS gave further credence to this problem in 1997 when they described it thus:
FAAAS came up with the term “Mirror Syndrome” to explain the way NT spouses and the NT family members adversely affected by AS behaviors, over time, begin to reflect the persona of AS behaviours we live with, twenty-four seven. We are isolated, no one validates us, we lose friends and family, and we feel like ‘hostages’ in our own homes. (FAAAS website)
My reasons for drawing attention to this condition, be it named Cassandra phenomenon or Mirror Syndrome, is to let NT partners who are in this 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 future take notice and be more prepared to hear what ‘Cassandra’ has to say.”