When a person lives with a life-altering disability, their families may feel a sense of loss. Feelings that may be associated with this are different than those that are associated with a death-related loss. Many families and caregivers of a family member who lives with a disability may experience ambiguous loss.
Ambiguous losses are ones that are not acknowledged or understood by society as losses. They are more unclear, can lack closure, unpredictable, and include situations that may not be the first that pop into our heads when we think about loss. They are not as straightforward as death. Among diagnosis of a disability, some other examples of ambiguous losses include having a loved one that is incarcerated, kidnapping of a loved one, pregnancy loss, dementia or other illness in a loved one, and loss of a loved one in a natural disaster.
A study by O’Brien (2007) looked at ambiguous loss in families of children diagnosed with Autism. They looked at areas of ambiguity that can cause stress:
1) Lack of clarity in diagnosis
· Because Autism Spectrum Disorders are based on a combination of various symptoms, getting the actual diagnosis can be a long process, and even then the diagnosis and what it means can be unclear.
2) Difficulty in predicting outcomes
· Autism diagnoses are not straightforward; each person’s symptoms are completely unique. This makes it difficult to predict outcomes.
· O’Brien also touches on the idea that ambiguity in outcomes can be intensified when parents hear about other Autistic children who have been “cured” using dietary or medical approaches. This makes it difficult for parents to be both confident that their child will still have a good outcome with empirical evidence-based intervention, and to come to terms with the permanence of Autism.
3) Day-to-day variability in functioning
· O’Brien says, “Children with ASDs have good days and bad days. What is easy for them to do at one time may create chaos and conflict later that day or the next time the situation arises. This variability in behavior makes it difficult for parents to plan activities or respond effectively to their children’s behavior.”
4) Appearance of health
· Children with Autism do not look any different from children without Autism. This can mean that when Autistic children are young, it may be a while before their parents realize that they have Autism and believe that they are developing typically. So, when their child gets an Autism diagnosis, parents have to suddenly alter their vision of what their child and their life will look like.
· O’Brien also points out that “the fact that children with ASDs look just like typical children often encourages extended family members and friends to discount the child’s diagnosis and convey messages to parents that they are overreacting or being alarmist in pursuing a diagnosis.”
5) Loss of relationships
· Due to the nature of Autism, in some cases, it may feel like the child is physically there, but not fully present psychologically in terms of what is “typical.” This can have an effect on the parent-child relationship.
Families may also experience identity or boundary ambiguity. This can include “confusion over who is inside the family and who is not,” and “ambiguity regarding separation between family members’ identities.” This refers to lack of clarity in and changes to the parent-child relationship. Parents may find themselves taking responsibility for many different areas of their child’s life, “blurring the boundaries between themselves and their child.” It can be difficult for the parent to separate their life and their commitments with their child’s. Parents may also find that there can be blurred lines between their role as a parent and their role as a caregiver. “Theoretically, parents who are so preoccupied with their child’s autism that they are unable to view their own lives as independent from the difficulties their child experiences are failing to maintain clear boundaries between themselves and their child.” Parents who experience this can find it difficult to analyze options and make decisions about interventions their child will receive as well as make choices for themselves in areas of employment and leisure. This leads to high levels of stress. (O’Brien, 2007).
O’Brien interviewed mothers of children with Autism to see where ambiguous loss shows up in their life. Some topics that came up frequently include:
· Conflicting/wide range of emotions about their child and their child’s Autism diagnosis
o A mother whose child is Autistic said, “I’m a little more hopeful now that there’s something that we can do about it…[but] some days I get pretty depressed because I know he’s always going to have it.” Another mother who has a son in preschool living with Autism said, “I still feel sorrow for my son, and I am still hopeful.” Some mothers were able to recognize a loss but did not know the meaning or implications of that loss. Some mothers felt hopeful and hopeless; some mothers felt in control but also helpless.
· Confusion about the future of themselves and their child
· Feeling like they were on a roller coaster and that many things were unpredictable
o Mothers expressed having trouble feeling stable when they are unable to predict what level of functioning in their child that day. “Some days are god, and some days are bad.” “Autism is just such a Pandora’s box. There are just a million different variables every single day.”
· Not knowing what their child’s outcome will be, and comparing their expectations for their child’s life before an Autism diagnosis to their current expectations
o “We were driving the other day and it dawned on me that, you know, he may never drive. You realize things, like what his life may be like. And yet you have hope, and you want to make his life as good as it can be.”
· Realizing that not only would their child’s life not be the same, but that everybody in the family’s lives would also be different from now on.
o “I went through the stage of, ‘I can’t believe this is happening. I don’t want to spend my whole life doing this.’”
· One mother expressed the different emotions surrounding the things that are out of her control: “The frustrating part of it is that I know that there isn’t anything that I can do about it, and I feel bad, but then I feel better because I know there is nothing that can be done about it.”
O’Brien, M. (2007). Ambiguous loss in families of children with autism spectrum disorders. Family relations, 56(2), 135-146.