Patients not believed about the difficulty of their lives
There is currently an alarming neglect of particular patients' experiences, by professionals in the fields of medicine, psychology and psychiatry. So much so, that a respected US physician has seen the trauma and tragedy of patients who are not being believed by their medical practitioner, and thus this brave physician has spoken out against colleagues' neglect of some of their patients' emotional and psychological well-being, even though there is a risk of damage to his/her own career and reputation.
The physician stated:
"It is astounding that about 1% (1) of the world's population is suffering from a specific, painful, devastating and inexpensively treatable syndrome for which none of the victims receive treatment because physicians and other professionals do not acknowledge the disorder's existence, even though its existence is a necessary logical consequence of established medical knowledge. That disorder is known as Ongoing Traumatic Relationship Syndrome or the Cassandra Phenomenon. Even more astounding, the victims' cries for help are being angrily refuted by another large group of individuals who do not have the disorder and may not know anyone who does. Can you imagine if this were the case for a form of cancer or liver disease? Can you imagine a group of militant individuals (who've never had heart disease) arguing that heart patients don't really suffer chest pain or shortness of breath?" (12-31-09). (2)
The physician's quote reflects the reality for millions of (NT) caregivers and family members of adults who have a neurological disorder on the Autism Spectrum.
"Neurotypical" (or "NT") is a neologism used to describe people whose neurological development and state are consistent with what most people would perceive as normal in their ability to process linguistic information and social cues. While originally coined among the autistic community as a label for non-autistic persons, the concept was later adopted by both the neurodiversity movement and the scientific community. In the United Kingdom, the National Autistic Society recommends the use of the term in its advice to journalists. www.statemaster.com/encyclopedia/Neurotypical
The NT caregivers, spouses and family members share common stories of feelings not being validated, they are not believed, and they are under appreciated by the professionals for their years of caring for the family member with Asperger's Syndrome (AS). Family members and spouses have reported feeling confused, emotionally abused, and are unable to explain their plight to the medical professionals regarding their adult AS family member.
When these desperate caregivers, spouses and family members seek support and assistance from their medical professional, they are blamed for the relationship problems which are not of their making. With the best intentions they have done everything possible to make sure their loved one is safe and secure, to try to solve what seems a mysterious issue in their relationship. Yet, the denial of the problem by the partner with AS is compounded by a matching denial by professionals with whom the NT spouse consults. Theory of Mind aka 'mind blindness' of those with AS does not allow them to recognize another person's point of view.
We respect the right of all AS individuals to express how they feel within their AS-NT interactions. Similarly, we reserve our right to express how NT's feel in NT-AS interactions. However, neither NT nor AS individuals have a basis for judging the intentions of individuals of the other party by denying that there are two different sides to every story.
Accurate diagnosis of AS is essential. There is also 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. Barrie Thompson shows concern for the NT family member and their experience in the following:
"My reasons for drawing attention to this condition, be it termed Cassandra Phenomenon or Mirror Syndrome, is to let the NT partners who are in this plight know that their situation is recognized. 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." (3)
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.
(1) ...The Board of Health (Copenhagen) estimates that at the current rate of diagnosis, 1-2 percent of (AS) children born each year could be
considered mentally unfit for the workforce.... www.cphpost.dk
(2) Cambridge University, The physician does not wish to be identified at this time.
(3) Barry Thompson "Counselling for Asperger Couples" Jessica Kingsley Publishers, UK, 2008 pp52-53
Judith Morgan - B.Ed Grad.Dip NSWTFRTA
~ Brisbane Australia.