Autism Diagnoses: Identifying and Understanding Loss
By Joanna Bisgaier

The mother of a child recently diagnosed with autism calls her doctor’s social worker. She is distraught because her health insurance company refuses to pay for her daughter’s recent developmental evaluation. The company asserts that since the child has been diagnosed with “incurable” autism, as opposed to autism spectrum disorder (ASD) or pervasive developmental disorder (PDD), she is not entitled to coverage. This determination meant that the parents would personally owe the doctor more than $1,300.

The mother requests that the social worker ask the child’s physician to change the diagnosis to ASD so her insurance will cover the cost. The doctor says that ethically she cannot modify the diagnosis. However, the social worker knows a way to apply to the state for retrospective reimbursement for the evaluation from that state’s medical assistance program for children with disabilities. When the social worker returns the mother’s call to tell her that the doctor cannot modify the diagnosis and to offer the good news regarding medical assistance’s retroactive coverage, the mother is agitated and protests that she cannot understand the doctor’s stubborn refusal to change the diagnosis. As the social worker begins explaining how medical assistance could pay the bill retroactively, the mother interrupts and shouts, “Thanks for nothing!” as she hangs up the telephone.

The presenting problem in the mother’s interaction with the social worker seems to be, on the surface, a family’s financial crisis and a mother’s aggravation in dealing with an unresponsive health insurance company and healthcare provider. With this view of the problem, a social worker’s response may address and resolve only the family’s financial crisis. Systemically, the social worker might also try to remedy this problem by organizing a community of parents of children with ASD and igniting a class action lawsuit against the insurance company’s unreasonable policy.

While both of these responses are valid and useful, they overlook the complexity of the emotional response of parents with children diagnosed with developmental disabilities. An examination of loss theories, specifically chronic sorrow theory, illuminates a broader context for this mother’s experience. Ultimately, identifying an underlying emotional process in the parent’s response could be critical to helping the family fully utilize the range of supportive services that a social worker may be able to provide.

The theory of “chronic sorrow” attempts to describe the kind of grief experienced by parents of children with chronically disabling health or mental health conditions (Olshansky, 1962; Roos, 2002). Chronic sorrow involves a distinct kind of grieving because the loss being experienced does not have an end point and the object of the loss is still present (Roos, 2002). The child’s family will experience a series of shocks to their expectations for their child’s condition and future. These are recurring and are usually triggered when typical developmental or cultural milestones are unmet. According to this theory, the parent’s grief process reoccurs throughout the child’s life, and a permanent adjustment to the loss is not possible (Olshansky, 1962; Meleski, 2002; Roos, 2002). Nonetheless, a survey by Meleski (2002) documents that 70% of parents say the initial diagnosis was the most difficult period in coping with their child’s chronic condition. Thus, we must understand our story’s mother in the context of an acute crisis.

Chronic sorrow theory specifies that during the initial, very difficult period following a diagnosis, parents can be slow to recognize their child’s disability and often focus on an unrealistic fantasy that leads them to seek doctors who may provide a more optimistic prognosis (Olshansky, 1962; Roos, 2002). From this theoretical perspective, the mother’s desire for the doctor to change her daughter’s diagnosis was rooted not only in her financial crisis but also in her experience of the first stage of chronic sorrow, in which a parent might negotiate and search for a better prognosis. This theory helps to explain why the mother was not interested in hearing the social worker’s solution to her financial problem (retroactive medical assistance coverage) and was instead overcome with frustration and disappointment surrounding the permanence of the diagnosis. There was finality to her daughter’s diagnosis; it could not even be changed for “insurance purposes.”

Although chronic sorrow theory can be applied to family members of people with many chronic disabilities, it has particular relevance for parents of children with ASD due to the nature of how it is diagnosed and treated. ASD is a neurodevelopmental problem that presents in early childhood and impacts social interaction, language development, and behavior (Santagelo & Tsatsanis, 2005; Sutera et al, 2007). Although it is believed that ASD has a genetic component, there is no known biological indicator used to diagnose ASD (Santagelo & Tsatsanis, 2005). Therefore, children are diagnosed based on observational assessments and developmental testing beginning from 20 months old (Sutera et al., 2007). Diagnosing and predicting future outcomes of children with ASD is difficult, and there is a broad range in severity of ASD impairments, ranging from higher functioning PDD to classic autism (Santagelo & Tsatsanis, 2005). A child’s condition may be more or less severe as they develop or respond more or less readily to early intervention therapies.

Consequently, when parents learn that their child is on the autism spectrum, there is a prolonged time period in which their child’s prognosis is inconclusive. The demonstrable characteristics of chronic sorrow, such as shopping for a more optimistic prognosis or maintaining unrealistic fantasies, may be more amplified for these families than for those of children with other disabilities. Increased susceptibility to these characteristics may translate into greater psychosocial risk. Survey data collected by Dunn, Burbine, Bowers, & Tantleff-Dunn (2001) draws a distinct correlation between unrealistic hopes and fantasies and a higher likelihood for depression, social isolation, and marital problems.

Despite the risks associated with unrealistic fantasies, chronic sorrow theorists do not encourage social workers to “push” or direct parents into acceptance. Rather than concentrate on acceptance, it is recommended that social workers understand chronic sorrow as a natural reaction and provide parents the opportunity to express their feelings through counseling (Olshansky, 1962; Roos, 2002). Although medical social workers may not be in the position to conduct such counseling sessions, providing an opportunity to discuss these feelings may be incorporated into casework practice as parents are referred to appropriate counseling and support groups. According to chronic sorrow theory, the goal is for parents to become more comfortable with managing and living with their children, not by submitting to their reality, but by identifying and responding to their normal, varied feelings of loss and grief. Roos (2002) argues that identifying, understanding, and validating a family’s grief as a normal response may strengthen a feeling of safety between the family and the medical team. This validation may in turn lead to better avenues of communication, helping the successful delivery of services to children with autism and their families.

Unfortunately, the incidence of ASD diagnoses has risen considerably in the past 25 years, climbing from 1 in 2000 children in 1980 to 1 in 150 children in 2007 (Centers for Disease Control and Prevention, 2007; Newschaffer, Falb, & Gurney, 2005). As the number of children counted in these statistics continues to rise, it becomes increasingly important that social workers engaged with these families understand chronic sorrow in order to identify it and better understand what parents are actually experiencing. By acknowledging the underlying impact of chronic sorrow in some capacity, social workers will more likely yield positive outcomes from interactions with struggling families and avoid complicating the future provision of concrete services for them.

— Joanne Bisgaier is a 2008 MSW candidate at the University of Pennsylvania School of Social Policy & Practice. This article is the Virginia P. Robinson Publication Prize winner.

References
Centers for Disease Control and Prevention. (2007). Autism information center. Retrieved on January 10, 2007, from: http://www.cdc.gov/ncbddd/autism.

Dunn, M. E., Burbine, T., Bowers, C. A., & Tantleff-Dunn, S. (2001). Moderators of stress in parents of children with autism. Community Mental Health Journal, 37(1), 39-53.

Meleski, D. D. (2002). Families with chronically ill children: A literature review examines approaches to helping them cope. American Journal of Nursing, 102(5), 47-54.

Olshansky, S. (1962). Chronic sorrow: A response to having a mentally defective child. Social Casework, 43, 191-193.

Newschaffer, C. J., Falb, M. D., & Gurney, J. G. (2005). National autism prevalence trends from United States special education data. Pediatrics, 115, 277-282.

Roos, S. (2002) What is chronic sorrow? In: Roos, S. Chronic sorrow: A living loss. New York: Brunner-Routledge.

Santagelo, S. L. & Tsatsanis, K. (2005). What is known about autism: genes, brain, and behavior. American Journal of PharmacoGenomics, 5(2), 71-92.

Sutera, S., Pandey, J., Esser, E. L., Rosenthal, M. A., Wilson, L. B., Barton, M., et al. (2007). Predictors of optimal outcome in toddlers diagnosed with autism spectrum disorders. Journal of Autism Developmental Disorders, 37, 98-107.