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Ambiguous Loss

November 30, 2017

This summer, I did some research for a class I was taking. I interviewed 7 couples who were members of the Church of Christ and have a child on the autism spectrum. I spent time asking about what they needed and desired from a congregation during the diagnosis process and what churches could do to reach out to them. Because autistic behaviors are specific to each individual child, the stories of each family varied in the same way each child does. Yet there were some commonalities. A couple of months ago, I had the privilege of sharing this information at Harding’s lectureship, and I thought I would post some of what I learned on this blog, over the next few weeks, with the hope that it might help someone.

The first thing I noticed as I was doing my literature review and comparing what I read to what I found in the interviews was this: Almost every parent I talked with described the autism diagnosis with the language of grief. That is natural, and understandable. That is certainly the way I recall that moment in our lives. But I also found that this kind of grief had a distinct characteristic: it was ambiguous.

In the 1970’s, Pauline Boss began researching losses that were not clearly defined. She started with families of soldiers who went missing during battle. These families struggled with closure. Does that soldier’s mother grieve as if her son is dead? Do they have a funeral service? Or does she hold out hope, looking forward to the day her child comes back to her? This gave rise to what Boss eventually termed “ambiguous loss.” It has since been applied to many different areas, including care for those with terminal illnesses (where there are questions about how and when treatments, etc. are working) and care for those with Alzheimer’s (when it is unpredictable how a loved one will behave from one day to the next). It has also been applied to a diagnosis of autism.

When parents receive that diagnosis, a torrent of questions floods their minds. They want to know what the future will hold: How will their child continue to develop? What should they expect? How can they tell the difference between autistic behavior and normal childlike behavior? They questions go on and on, and since every case is different, the physician giving the diagnosis cannot answer that question. This why when you ask parents who have received that diagnosis what you can do for them, they will often answer, “I don’t know.” That is just one of many things they don’t know at that time!

One study of 20 parents of autistic children defined it this way: “Learning of the diagnosis and hearing the word autism was reported by parents as a highly emotional moment. A diagnosis of ASD is perceived with the same intensity as death. The word autism signifies the loss of a ‘healthy’ child with whom they had been living until that moment. Uncertainty about the diagnosis appears related to ambiguity about the prognosis and development of their child.” (Fernańdez-Alcántara, M., García-Caro, M.P., Pérez-Marfil, M.N., Hueso-Montoro, C., Laynez-Rubio, C., & Cruz-Quintana, F. (2016). “Feelings of loss and grief in parents of children diagnosed with autism spectrum disorder (ASD).” Research in Developmental Disabilities, 55, 312-321.)

Also, for a brief illustration of a few of the emotions surrounding a diagnosis, you can check out this scene from the show Parenthood. I think it does a pretty good job in a couple of minutes touching on some of the feelings parents experience.

Parent’s Reaction to the Diagnosis

As in any type of grief, it seems to me the first and best strategy to help is compassionate listening. The parents I interviewed would light up when they described people who proactively took an interest in their child and were willing to listen to them. I can think of several friends and family members that let me ramble on and on to them about what was happening (and they still do that). I left those conversations feeling better, simply because I knew they listened and I knew they cared. So, the first thing I was reminded of when doing this research – compassionate listening is vital.

So, if you are wondering how you could help parents you know who have received an autism diagnosis, compassionate listening is where I would begin. There are no easy answers, especially when the future is still unclear, but knowing that someone else genuinely cares can give you strength to face whatever comes next.

 

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