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.