This talk, by geneticist Wendy Chung, posted in TED is a good way of sharing what we know about autism spectrum disorder on World Autism Awareness Day. As she mentions, there is a long way to go in knowing completely about the causation of this disorder which in turn will inform and help to come up interventions to manage it.
Two organizations are actively engaged in spreading awareness and providing services related to Autism in Nepal: Autism Care Nepal and Special School for Disabled and Rehabilitation Center (SSDRC).
Here, in this post, I would like to discuss about autism and ambiguous loss.
Families of children with autism experience the ambiguous loss due to the psychological absence of the children in their proximity. It is very stressful and challenging to any family while coming to terms to learn that the child has a lifelong developmental disorder by birth. Awareness of autism and knowledge and skills for supporting the children with autism help the families to adapt and accept the condition. Ambiguous loss adversely affect the psychological well-being of an individual as it is a loss that is often unclear and coping with it requires understanding and a lot of resources compared to other clear loss that has closure and can be overcome with time.
Pauline Boss, in her book, Ambiguous Loss: Learning to Live with Unresolved Grief, has written extensively about the ambiguous loss, how it affects the mental health and how to adapt/manage the ambiguity. Many mental health professionals and humanitarian organizations such as Red Cross have used her work to help families of the missing. She has developed the theory of ambiguous loss over several decades of her career. Recently, autism spectrum disorders are getting new attention from researchers using the theory of ambiguous loss.
Pauline Boss defines, “Ambiguous loss is a relational disorder and not an individual pathology. With ambiguous loss, the problem comes from the outside context and not from your psyche.“
There are 2 types of situation of ambiguous loss:
- Type One situation is when there is physical absence and psychological presence. These include situations when a loved one is physically missing or bodily gone like in case of missing during the conflict era. It is called ‘Leaving without Goodbye.’
- Type Two situation is when there is physical presence and psychological absence. In this type of ambiguous loss, the person one cares about is psychologically absent– that is, emotionally or cognitively missing like in case of Alzheimer’s, dementia, depression, addiction, or autism. It is called ‘Goodbye without Leaving.’
Ambiguous loss halts the grief process and prevents closure disrupting family functioning. Research has shown that community based interventions are more effective in helping the individuals experiencing ambiguous loss rather than individual therapy. Support groups can help to create unity and break isolation for them. Families of children with autism can come together to support one another in coping with ambiguous loss and finding positive meaning and hope for the future.
Originally posted on The GW Post:
by Alexander Miller Tate
A common theme in contemporary post-conflict security and development literature is the instability of states that have recently experienced a cessation of armed conflict. As of 2008, slightly less than half of all civil wars were a result of the breakdown of post-conflict peace . This has provoked a burgeoning literature investigating how a recently post-conflict state can avoid relapse. Common solutions involve processes of reconciliation between oppositional groups, as well as the securing of transitional justice for those wronged, yet this literature and that surrounding the prevalence of mental health issues in post-conflict environments have rarely crossed over.
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Following text is the transcript of the conversation on his recently published paper titled, ‘A Village Possessed by “Witches”: A Mixed-Methods Case–Control Study of Possession and Common Mental Disorders in Rural Nepal’ published in Culture, Medicine, and Psychiatry Dec. 2014, Vol. 38, Issue 4, pp 642-668. Full text: Sapkota et al, 2014-A Village Possessed by Witches
I would like to thank him for his contribution to prepare this material.
Sujen Man (SM): What got you interested in exploring this ‘spirit possession’ phenomenon?
RP Sapkota (RP): In 2003, after my graduation in psychology, I started working for Centre for Victims of Torture (CVICT), Nepal. At that time, CVICT received a request from a high school in Kavre district to do an assessment of 12 children who had experienced fainting spells. My seniors (Dr. Bidur Osti, Dr. Wiestse Tol, Sushma Regmi, and Jamuna Maharjan) invited me to accompany them for the assessment and intervention program. We did a qualitative evaluation of the situation through individual as well as group interviews with affected children, parents, community members, teachers and traditional healers. At the end, we provided mass psycho-education involving community people, school children, parents, and schoolteachers. During our assessment and intervention, some of the children fainted. It was, at first, a very bizarre experience for me but got me fascinated. After coming back from the school, I began collecting data on the issue from various sources such as newspapers, NGO reports, and field visits whenever possible. By the end of 2010, I was able to collect data from 49 such incidents affecting more than 700 children (in seven years period since 2003). I wanted to understand why mass trance and possession phenomenon (also known as mass hysteria, mass conversion, mass psychogenic illness) was so prevalent or occurring in an epidemic scale in Nepal.
SM: I am curious how did you select the research site and sample for your study?
RP: Well, I was working for CVICT when we first heard about the possession incident in Sindhupalchowk. During one of the refresher trainings for counselors, one counselor working for one NGO in Sindhupalchowk showed a video of a possession incident in the village. After that again, I became aware about the mass possession incident in the village from one of my colleagues who was coordinating the training for CVICT at that time. For me this was an opportunity. So, I talked with some of my colleagues at CVICT, they were also interested to be involved in the study. Therefore, we communicated with the counselor from Sindhupalchowk and in his coordination and support we got access to that village. In our first visit, we met with two schoolteachers, a priest, affected people and their family members. Then, based on our inclusion and exclusion criteria, these schoolteachers and the counselor identified participants for the study.
SM: How did the people, esp. participants, receive the research team? What was their response? Were they willing to participate in the study or it took some time??
RP: As we have mentioned in the paper, people in this village were suffering for more than six months when we first visited the village. They had tried everything within their access (traditional healing to biomedicine) but nothing availed. They had spent lots of money. Furthermore, because this illness was affecting many people, social ecology was affected and social cohesiveness was decreasing. Enmity among the relatives and neighbors had increased. Therefore, they were willing to try anything that they thought might help them get rid of the problem in the village. I found them to be very friendly and supportive from the very beginning.
SM: There is a narrative of index case of Shakshi in your paper, which led to the possession epidemic in the village. Did this case solely led to such possession or had it been occurring previously as well. Interesting, you mention 30 people were affected in a single year following an index case.
RP: We talk about this issue briefly also in the paper that possession as such was not a new phenomenon in the village because there were many incidents when people of that village had experienced possession but they were isolated cases of possession of individuals. This was the first time that as many as 30 people were possessed. We have discussed about the possible psychosocial pathways of contagion in the discussion section of the paper but there could be many other pathways that we have not covered.
SM: You have used even video recording of possession episodes as means of data collection. It must have been great for data triangulation. Would you like to say more about this and how useful it was? Are possession episodes predictable which made it possible to video record it? I would like to know how was the research team able to capture it?
RP: Yes, having a video about possession episodes and also people talk about them really makes it feel like as if it is happening right now. We could observe expressions/behaviors of people possessed and the reactions of their family members and other bystanders as many times as we like. We could observe change in the behavior or indifference of the possessed person based on the reactions by the family members and others. Likewise, had it not been video recorded, we would not be able to see the participants make fun about what they themselves did when they were possessed during the interviews. If we had only audiotaped the focus group interviews then perhaps we would hear the participant laugh on and off but we would not be able to comprehend the intricacies involved. We wanted to video record the interviews because we hypothesized that those woman will be possessed during these interviews/discussions and we wanted to capture that apart from capturing what they had to say.
SM: ‘Excluded were women who reportedly were afflicted by a boksi but had not experienced chhopne…’ from sample and methodology section. Could you please explain more about this? What is the difference between being afflicted and being possessed?
RP: Anyone could be afflicted by witchcraft (Nepali: jaslāi pani boksi lāgna sakchha) but not all who are afflicted by boksi get possessed. They might have different ailments because of witchcraft but they won’t be possessed. Meaning, their “self” would not be controlled by some spirit.
SM: You mention about cases of 2 children as well who experienced possession which is not included in your study however. What could have been the reason behind – the imitation/suggestibility or the traumatic exposures in the school/home/community?? I recently heard about the case of child who had this problem after he was severely beaten by a school teacher and he had possessions several times in the school after that so, his parents had to change the school for him due to it.
RP: I cannot really say anything concrete on this but make some assumptions. As we have said in the paper, possession cannot be mapped into a single causal factor. There could be multiple factors at play. One of the assumptions could be as follows:
Psychologically speaking, possession is a dissociative phenomena and the literature in dissociation suggests that some people have 1) higher propensity to dissociate, 2) higher level of suggestibility, 3) higher level of fantasy proneness etc. They have the quality required to dissociate. People in Nepal, especially living in rural communities, are exposed to the idea of spirit affliction (for example lāgu/ lāgo lāgnu, bhoot/pret lāgne), spirit possession (for example devi/deutā chadnu/utrinu) through observing their parents, neighbors or through stories. They have the cultural knowledge that the spirits could possess a person. So, when they have problems that cannot be communicated directly and/or requires the attention of the family, school or the community then, for some people, the quality to dissociate and the culture knowledge of spirit possession come for a rescue in the form of possession; they get possessed.
SM: upon sharing the results, you write ‘None of the possessed women, their family members, or focus groups participants spontaneously associated the condition with traumatic experiences or other life stressors; nor did they view it as a mental health problem. Indeed, when the results of this study were presented to the community, they refused to accept the ﬁnding that possessed women had a higher risk of common mental disorders compared to the non-possessed women. They also did not see possession as a way of coping. Instead, they reafﬁrmed their view that spirits that were angry or upset had the ability to inﬂict harm by possessing people.’ How did the research team react to this?
RP: This made us realize that what we were saying was from our academic knowledge (etic perspective) and what they were saying was based on their experience and cultural knowledge (emic perspective). Therefore, during psycho-education we presented the psychological perspective as an alternative way of understanding what was going on in their village but not as a scientific fact.
SM: Did you explore about how religion conversion helps in mitigating such suffering? In my previous research work, I met with several young girls and even men who benefitted from converting religion. It helped them in solving their fainting/possession problems but created other problems like intra-family disputes (children not celebrating dashain while the parents did). I wonder what did you find??
RP: This is a very interesting issue to explore and understand but in our study, this did not come up.
SM: The quantitative results of your study clearly show the need for psychosocial interventions. However, as you mentioned, the participants did not think it to be mental health or psychosocial problems, in such case, what kind of interventions might work??
RP: Yes, you are right that there is a need for psychosocial interventions but as we have mentioned in the paper that biomedical solutions were not helpful, and I believe the same thing about any purely psychological intervention. In addition, I think there is no value in providing education on Western categories of mental disorders (i.e. depression, PTSD, ADHD) when there is no analogical concept of such illness existing in that social and cultural context. This has come up clearly in the paper that people did not accept any biomedical-oriented explanations of this phenomenon. Therefore, we need to provide interventions that are culturally acceptable. However, it is important to note that cultural acceptability does not mean that whether or not the people of different cultural settings receive the medicine or psychotherapy offered to them without resistance. Cultural acceptability, in my understanding, means whether the intervention offered is in-tune with the social and cultural systems of beliefs, knowledge, experiences and worldviews; whether or not the intervention respects the cultural norms and values of people; whether or not the intervention is able support and enhance existing protective factors, traditional understanding and ways of dealing with problems and solve their health problems without harming them.
SM: ‘In the end, the affected women were all treated by performing an extensive village-wide traditional ritual, called ‘‘Khali Khane’’ (Gray 1987). Follow-up with a schoolteacher in April 2012, indicated that, after almost 2 years of continued suffering, the problem in the village had completely stopped, and the villagers had not heard of the fainting episodes in the village, and the shrine is no longer used by anyone.’ This is very interesting end to your story. How did you see this??
RP: Amazing! An example of psychosocial intervention for psychosocial problem.
As we have said in the paper, possession by spirits was not intentional but it served as an idiom of distress and coping strategy for people with psychosocial problems. It is apparent in the paper that existing life situation of these people is not so great. They have various social problems and limited resources available to deal with them. Although, checklist-based assessments of mental health problems had shown higher vulnerability for mental illness for possessed people compared with non-possessed, this does not mean that all the possessed people have mental disorders or going to have one. So, affected people and their family members needed a culturally meaningful explanation for what was going on in the village and kind of assurance that those affected were safe and the existing problem would not have a long term health impact. Khali khane ritual served this purpose.
SM: For your information, I would like to share something about GatheMangalfestival whichNewars celebrate in Kathmandu every year (July – August) to save themselves from the influence of evil spirits. It is believed that at midnight of GatheMangal, witches come for a gathering at the crossroads. http://theweek.myrepublica.com/details.php?news_id=79661.At last, I would like to ask something personal, your belief in evil spirits. Do you think they exist??
RP: Thank you for sharing. See, this is an example of how strongly we believe in spirits and in their ability to influence our lives. I think, it is not a question of whether they exist or not (because no one knows) rather a question of whether you believe that they exist or not. I hope you understand what I mean.
About the Investigator:
Ram P. Sapkota is a psychologist from Nepal. He is currently enrolled in a PhD program at the Division of Social and Transcultural Psychiatry, McGill University. He is the founding President of Psychosocial Support and Research Centre (PSRC), Nepal – a nongovernmental organization(NGO). He has worked in the field of psychosocial and mental health care for almost a decade in Nepal. His areas of interest include organized violence and its impact on mental health and wellbeing, psychosocial interventions, and global mental health. He is also interested in cultural concepts of distress, traditional healing, and in culture and dissociative phenomena such as trance and possession. Currently, he is involved in a multidisciplinary study on trance and possession phenomena in Nepal. The study aims to produce insights into existing gaps in evidence on the etiology of mass trance and possession by triangulating methods from psychology/psychiatry, neuroscience, and anthropology.