Families of Adults Affected
by Asperger's Syndrome
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 “mindblindness. Challenged in relationship ‘mindblindness,’ 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 a 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