Note: This article was originally published in the Winter 2016 issue of Behavior Analysis Quarterly, Vol. 2(1).
By Jennifer Bozosi
St. Cloud State University/Lovaas Institute
More than 3.5 million Americans are estimated to have autism (Autism Society, 2015). With an estimated 1 percent of the population having this diagnosis, the top skill demanded for Board Certified Behavior Analysts were for those who provided autism treatment (Burning Glass Technologies, 2015). The Center for Disease Control and Prevention (2014) reports that the prevalence of children diagnosed with autism who are 8 years of age is as high as 1 in 68. For parents, the diagnosis can have differing meanings. For some parents it can bring a sense of hope or relief because they finally have an answer for their atypically developing child (Goring, 2013; Midence, K., & O’neil, M. (1999). For others, it can result in a myriad of emotions ranging from fear, denial, guilt, depression and anxiety, anger, and lonliness (Goring, 2013). Some of these reactions seem to mirror the theory of five stages of grief introduced by Elizabeth Kübler-Ross in 1969. These reactions may be potential avenues for behavior analysts to build rapport and establish working relationships with parents. While autism practitioners don’t necessarily have any tools in place to readily address grief theory, we might model our future practices on the Kübler-Ross model. This paper will first review the grief model and will conclude by discussing how behavior analysts can take advantage of these stages when working with clients.
Merriam-Webster (n.d.) defines loss as, “failure to keep or to continue to have something; the experience of having something taken from you or destroyed.” The event of loss can trigger grief, defined as “an unfortunate outcome or disaster, a cause of such suffering; a deep and poignant distress cause by bereavement.” A stage model of grief was introduced in 1969 by psychiatrist Elizabeth Kübler-Ross (Kübler-Ross, 1969) in her groundbreaking book, On Death and Dying. These stages included denial, anger, bargaining, depression, and acceptance. Study and explanation of these stages is dominated by descriptive assessment. When examining grief theory, many agree that there is no typical response to loss, or typical type of loss (Holland, 1996; Kübler-Ross & Kessler, 2005; Moses 2004; Sanders, 1992). Therefore, models of grieving have been adapted to many forms of loss, including the loss of presupposed future hopes and dreams described by parents of children with disabilities (Green, 2002; Scorgie, Wilgosh, & Sobsey, 2004). Green (2002) inferred that these parents actually experience a “double loss”—the loss of the child that they had imagine having and a loss of a culturally defined future life. Some parents have described emotional behavior following diagnosis of a child similar to that felt following a death, but of the expectations of the child’s life, not in the death of life itself (Steele, 2000).
Parents experiencing grief do so in ways unique to the individual and without ordinal prescription (Kübler-Ross & Kessler, 2005; Sanders, 1992). In example, Hayley, Hammond, Ingalls, and Marvin (2013) stated that parents initiating special education services for their child with special needs experienced the traditional stages of grief as outlined in the Model of Parental Response to Disability proposed by Kübler-Ross (1969). After first learning that a child had been referred to special education because of suspected disability, Hayley et al., (2013) reported that the initial reactions denial were consistent with the initial stage of Kübler-Ross model of grief (47%). A small number (11%) of the parental reports were characterized as experiencing an intermediate stage of grief, (split between guilt and depression), and the remainder (45%) of the parental reactions being the final stage of grief (acceptance and hope). One explanation of the data is that autism has different meanings to different parents depending on history prior to the diagnosis. For example, the diagnosis may come as a shock to first-time parents who had no concerns with their own child and result in denial or depression. Parents who struggled knowing that their child was atypically developing may be relieved and readily accept diagnosis.
An attempt to empirically study the grief stages was made by Maciejewski, Zhang, Block, and Prigerson in 2007. They conducted the Yale Bereavement Study in which 233 grieving individuals were longitudinally examined 1-24 months following the loss of a family member by cause of natural death. The authors used the Inventory of Complicated Grief-Revised, formerly known as the Traumatic Grief Response to Loss. The interview contains five rater-administered items assessing disbelief, yearning, anger, depression, and acceptance. Examining the relative magnitudes and patterns of change over time, results indicated that disbelief was not the initial dominating stage of grief across participants and that each of the stages peaked in ordinal position as predicted by stage theory. However, a careful review of the published data indicated that acceptance was the most frequently sanctioned item during measurement, occurring daily or several times per day for many participants (Bonanno & Boerner, 2007). These results suggest that grieving stages may be controlled by any number of environmental variables, and are robust indicators that an individual may experience various grieving behaviors throughout a given day.
Parents may experience these emotional behaviors throughout the course of a disabled child’s life. In a descriptive, retrospective study of 10 parents’ perspectives on raising a child with a disability, not only did they describe the same emotional behaviors at the time of diagnosis, but also they described intermittent reoccurrence of these emotions during child rearing (Blaska, 1998). Bendrix, Nordstrom, and Sivberg (2007) conducted an interpretative analysis of 10 parents from five families who eventually placed their 10 or 11 year-old child with autism in a group home. Results outlined a range of themes of emotional behavior, including grief and sorrow about not having a typically developing child. These data affirm that there is no time limit on parents’ experience of grief behavior related to diagnosis.
Although the study of grief theory is dominated by descriptive assessment, one may look to assess the behaviors of grief experimentally. In an examination of the integration of descriptive and experimental fields of study, Bijou, Peterson, and Ault (1968) duly noted that descriptive studies answer the question, “How?” In harmony with this statement, descriptive studies on grief attempt to answer the question, “How do we grieve?” In behavior analysis, we may ask, “How do we respond to the loss of highly valuable conditioned reinforcing stimuli?” Bijou and colleagues (1968) went on to say that experimental studies answer the question of “Why?” Therefore, a behavior analyst may ask, “Why is the behavior occurring?” Briefly, this paper will next review grief the five stages how people may grieve and propose possible reasons for the behaviors.
GRIEF THROUGH A BEHAVIORAL LENS
Denial is the refusal to accept facts relating to a particular situation (Kübler-Ross, 1969). Upon receiving the diagnosis of autism, parents are faced with unanticipated changes in priorities of goals, beliefs, and values for the child and family. The diagnosis might mean adjusting the idea of the role of being a parent into something less familiar and seemingly more challenging. For some parents, these changes can make receiving a diagnosis aversive and result in denial. Denial as a coping skill can help to distance themselves between the diagnosis and what they had imagined to be the future for that child (Moses, 1987), and allow time for parents to adapt to this new information, and for other behaviors that can address the diagnosis to come to strength.
Anger is another commonly known topography of grief behavior. Parents may demonstrate physical, verbal, or other nonverbal aggressive behavior, or may be defiant toward treatment. Skinner (1953) listed behaviors of revolt as a byproduct of control, and anger, in turn, the byproduct of revolt (p. 359). Parents may be resistant to the controlling event of a diagnosis of autism and may react with displays of anger toward the child, other family members, or the behavior analyst.
Bargaining may occur when parents try and make decisions to solve the problems that accompany an autism diagnosis while seeking to maintain balance in their lives. Parents may consider the quality, number, and acceptability of risks when making treatment decisions (Holicky, 2009), or choose to reference the child’s current level of responding, the functioning of the family system, or the financial status as part of the decision-making process. Other points of reference may also include cultural and social aspects (Holicky, 2009) that affect the child and family, many of which might have a previously conditioned history. Parents may bargain to achieve a state of equilibrium across all things considered. They might bargain to escape the control that autism has taken on the lives (Skinner, 1953, p. 361-362) by avoiding committing to any one treatment. In a meta-analysis of risky decisions, Kürberger (1998) stated that the presence of threats (i.e., making the wrong decision) are consistent with conservative behaviors (i.e., bargaining to maintain a history of known reinforcement, resistance to change). Few decisions may be riskier than those that have impact on a child with autism and an unclear future.
Depression might manifest in the form of inattention to important visual or verbal stimuli, fatigue, atypical eating, and apparent low-effort responding (Friedman, 2012; Goring, 2013). Behaviors of guilt can accompany depressive behaviors. Parents may express a lack of taking all preventative measures during or after pregnancy (lack of identifying and controlling all of the variables), having had inappropriate thoughts toward the pregnancy (negative verbal behavior), or rule-governed behavior such as, “Good things happen to good people, and I must not be a good enough person,” (Goring, 2013; Moses 2004). Whether the parent subscribes to the medical model or social model of disability, guilt behavior may serve to remediate deprivation of causal variables the diagnosis of autism fails to provide. Though the cause of autism is unknown, these verbal responses might serve to explain the unexplainable, to conceptualize cause and effect (Moses, 2004). For others, the diagnosis might serve as an answer to the unknown explanation of their child’s atypical development, but the additional demands of treatment may result in depression. Depression and guilty behavior may be translated as passive resistance, which can be the result of controlling effects of the child’s autism diagnosis on the parent (Skinner, 1953, p. 360). When these behaviors are observed, it society’s tendency to provide an actual or layman’s diagnosis of depression by converting even one of symptomatic behaviors into pathology, to treat these behaviors negatively, and assume certain biases about people accurately or erroneously defined as “depressed.” Such biases typically infer that the person is limited, incapable, helpless, and broken. However, Moses (2004) refuted such assumptions and states that depression can be a medium that helps parents come to new definitions of what it takes to be a competent, capable, valuable and strong person, even though their child may have impairments that they may not be able to cure. Behavior analysts should maintain an objective view on these behaviors and recognize their environmental relations rather than using these behaviors as nonfunctional descriptors of a parent’s state of being.
Acceptance of diagnosis may occur for a parent at varying times throughout the life of their child. Acceptance can be evoked when values are revised, and when commitment behaviors are set and met with success. For some parents, the goal of finding an answer as to why their child is atypical may result in immediate acceptance of an autism diagnosis. Other parents may feel in more control after gaining knowledge about autism and skills in how to work with their child, resulting in more positive feelings toward their child’s situation and the future (Scorgie et al., 2004). These parents may have also restored equilibrium in family life, by learning how to better predict the direction in which their child’s behavior will change with daily environmental influences (Skinner, 1953, p. 142), making the diagnosis more easy to accept. As time passes for all parents, the effects of previously conditioned stimuli of a future with a neurotypical child have been lost (Skinner, 1953, p. 71) and been replaced by new conditioned reinforcement paired with the child with autism, resulting in stronger, more frequent acceptance.
UTILITY OF GRIEF THEORY IN WORKING WITH
Previous data indicate that parents might experience daily changes in grief. When practitioners fail to acknowledge and accurately respond to grieving parents, the result is a lack of reinforcement for parents in working with presumptuous and unresponsive professionals, the side effects of which include emotional behavior such as frustration and anger (Allard, 2015; Hayley et al., 2013). Behavior analysts might benefit by following a movement toward positive psychology that attempts to confront this error by no longer pathologizing parents while maintaining the link to grief concepts (Allard & Hancock, 2012, para. 14). For example, describing a parent as depressed has little utility, while describing parent behavior in terms of frequently cancelling therapy sessions or not responding to training instructions has greater use for the behavior analyst. One can hypothesize any number of environmental events or stimuli that can evoke any topography of grieving throughout a day, week, or year. A behavior analyst who is attentive to familial responses, not just client responses, may better optimize treatment. Descriptions of observable behavior can help identify variables that can be manipulated to establish treatment adherence. It is this direction that the stages of grief may be employed to help behavior analysts achieve treatment adherence, integrity, and consumer satisfaction.
The next section lists topographies of grieving, with possible motivational operations and functional relations hypothesized. General consequences will be presented as points of consideration on how to address parents when behavior analysts make observations indicative of grief. Awareness of behavioral indicators, possible antecedents, motivating operations, and maintaining variables may prove beneficial in identifying integral establishing and abolishing operations that can be efficient in affecting parental and, subsequently, child behavioral change. Given the evidence, the reader should repudiate the stages of grieving as a necessary part of being a parent of a child with disability or as occurring exclusively in some temporal order.
Denial may be clearly stated in one’s verbal behavior, or may be more discernible by a person contradicting the statements of one’s own verbal behavior. For example, a parent may ignore or deny their child’s socially unacceptable behavior, or fail to identify the child’s basic needs such as improving eating. In these examples, a parent may have habituated toward the child’s maladaptive behaviors, or may not have an understanding of behavioral norms or the developmental norms of eating. In these cases, a behavior analyst may find educating the parent in social and developmental norms, along with task-analyzed steps toward those goals, may be effective in establishing treatment.
By the time behavior analysts are working with parents, denial may have developed a strong history of negative reinforcement. In a publication by Scorgie, Wilgosh, and Dobsey (2004) on the personal transformation of parents of children with disabilities, the authors provide an example of a newly pregnant graduate student who was asked whether she was expecting a boy or a girl. Scorgie and colleagues interpreted her response, “Oh, we don’t care if it’s a girl or a boy, as long as the baby’s healthy,” as an expression of a socially negotiated view of health and disability, suggesting disability was a great tragedy. It is possible that, by the time behavior analysts are working with parents, denial may have acquired a history of effectively avoiding aversive social consequences such as punishing conversations with family or community members about the child’s delayed development, excessive or stigmatizing behaviors, and diagnosis. Behavior analysts may consider incorporating treatment goals that include training parents on different ways to respond to difficult conversations.
Parents may be angry about their child’s autism diagnosis and direct their anger toward those providing treatment. Parents may show anger toward a behavior analyst providing autism treatment because they are a reminder of the child’s atypical development and the damage the diagnosis has inflicted on the family. Behavior analysts who are skilled and professional will modify their own behavior to continue to meet the child’s needs while seeking out novel or increased ways to condition their presence as reinforcing to the parent. At times, this may seem like walking along a tightrope, and careful analysis of your effects on the environment should be noted. For example, the behavior analyst might presume that allocating more of their clinical time to direct therapy with the child when the parent is present may strengthen the function of the analyst as conditioned reinforcement. However, if an apparent reduction in the parent’s anger is not noted, the behavior analyst might try another strategy, such as spending more time reinforcing the parent for behaviors that remind them that they are the expert on their child.
Parents may show frustration toward the child. If the parent is demonstrating an increasing trend in behavior that interferes with treatment, observation or analogue assessment of the natural or therapeutic environment may be effective in identifying antecedent and consequent variables of the angry behavior. If the variables are specific to child behaviors, the behavior analyst may make use of anger as motivation for the parent to engage in the child’s treatment. Or, the parent may demonstrate anger with no specific antecedent identified. When this is observed, it may be necessary to increase support during parent-implemented therapy sessions to help provide more immediate assistance in working with the child. Strategies might include taking turns in working with the child to provide temporarily relief by altering the continuous demands of the environment, supporting the parent in maintaining organization of the therapy sessions, and reducing the complexity of treatment to increase effective teaching. Providing additional support also allows for an increased opportunity to analyze other potential sources of reinforcement between parent and child that could allow for adjustment a schedule of reinforcement that competes with the frequency of anger.
In yet another example, anger may be due to other treatment-related variables such as the schedule of services being too intrusive or interfering with other reinforcement, or limited access to social reinforcement as a result of autism, and the behavior analyst should be similarly responsive and constructive.
Unlike the loss of a loved one in death, there is no finality to the diagnosis of autism, only overwhelmingly endless possibilities. Early in the diagnosis, there can be a great deal of unpredictability as to the severity of the disability and the long-term outcome. Parents are exposed to various professional opinions from medical and educational professionals as to what the future may hold. Parents may feel a sense of urgency to choose a course of treatment quickly. Although parents may choose ABA as the treatment of choice, they are faced with the uncertainty of a “cure” and have access to a multitude of testimony of other treatment options through support groups and the Internet. Regardless of whether ABA mitigates the autism diagnosis, parents may continue to explore other options and even consider taking a combined approach by concurrently engaging in ABA treatment and other disciplines. These events can be the catalyst for bargaining.
Bargaining may be demonstrated by the negotiation of scheduling priorities across providers, attempting to integrate the practices of other disciplines into ABA therapy sessions, and in making requests of behavioral therapy staff that push professional or ethical boundaries to maintain equilibrium of the child’s entire treatment package. Identifying the measures parents are referencing while trying to make treatment decisions can be useful when responding to bargaining. When faced with decision-making, it is the manipulation such points of reference, not the salience of the outcome, which has been shown to be an influencing independent variable on decision (Kürberger, 1998). With this evidence, behavior analysts can seek to identify a parent’s point or points of reference they are evaluating, and determine whether the parent’s proposal maintains accord with the agreed-upon treatment goals. When the goals align, this affirms the accuracy and validity of the motivating operation. From this, environmental events and their establishing operations or abolishing operations may then be studied.
In the face of the new diagnosis, parents who are bargaining may actually be struggling to identify discriminative stimuli and related appropriate problem-solving behaviors needed to make decisions for the life of the child and family. Skinner (1953) stated that being neutral or reinforcing in attempt to free an individual, in this case a parent, of any negative effects of control in order to strengthen other behaviors that can be of benefit in the problem-solving process (p. 370). One way that we can establish parental adherence and rapport is to allocate time toward parent meetings and to demonstrate prudent, nonjudgmental yet reinforcing verbal and nonverbal communication. Behavior analysts should objectively assist in conducting macro and micro, short and long-term analysis of potential costs and benefits of treatment options, while working to re-establish and maintain integrity and adherence. Further reduction of negative variables during problem solving may include scheduling parent meetings at the parent’s preferred time, or when the child is engaged in a therapy session. Being flexible with the schedule may support a parent’s active engagement making necessary decisions to resolve bargaining.
Depressive behavior might be resolved with negative reinforcement by the removal of aversive stimuli. The behavior analyst may identify an event or a series of common events that have evoked depressive symptoms, and then assist the parent in identifying new priorities for training to prevent similar future events. For example, teaching the parent how to reduce their child’s tantrum behavior may improve a withdrawn parent’s attendance and engagement during therapy sessions. A parent may begin discounting the previously agreed-upon goals as a means of attempting to gain reinforcement, produce lower response effort, or to escape demands. We should also consider the current level of demand during training and determine whether the response effort necessary for the parent to contact reinforcement with the child is too great. To ensure the integrity of the child’s treatment program and in efforts to maintain treatment adherence, a parent’s skill acquisition plan should be dynamic and responsive to the current motivators and behaviors of value to the parent. Behavior analysts should be particularly concerned with clearly establishing and frequently reviewing informed consent when a parent displays depression by confirming their comprehension of the current treatment goals and related methods. Ensuring informed consent confirms that treatment is acknowledging the goals of the parent. The reinforcement of setting goals and completing them can compete with, and possibly resolve, parental depression.
Parental acceptance can occur throughout treatment as necessary skills are identified and mastered over time. Deprivation of the original hopes and dreams following the child’s diagnosis can provide opportunity and motivation for other behaviors that support acceptance to be simultaneously strengthened. Behavior analysts who take advantage of these states of deprivation by identifying and conditioning new reinforcement and teaching new parent skills might rapidly develop rapport and optimal parent therapy sessions. Optimizing parent sessions can increase parenting skills that can directly address the child’s autistic symptoms. When these behaviors are quickly strengthened, a greater frequency of acceptance behavior might occur earlier rather than later in treatment. Optimal therapy sessions are likely in part the effect of accurate identification and efficient conditioning of new immediate or long-term reinforcement, and such reinforcement may compete with denial, anger, and depression and in turn support acceptance. Increased parenting skills therefore can acquire adaptations to the diagnosis that reinstate parent and family homeostasis while incorporating their child’s diagnosis. Through the establishment of a collaborative relationship with the behavior analyst, and the acquisition of knowledge and skills training, parents can gain competent utility of any number of behavioral tools that alleviate the stress experienced by their child’s diagnosis, resulting in acceptance.
By examining grief through a behavioral lens, we can find its utility in developing and establishing rapport with parents. With preservation of professional integrity and a scientific mind, behavior analysts should approach grief objectively and without inference. When we work with children with autism, we also serve the parents, who may respond with different topographies of grief while engaging in and making decisions for their child’s treatment. Current and historical social constructs and external influences can have a predominating effect on a parent’s comprehension of their child’s autism diagnosis and related choices (Scorgie, 2004) throughout the life of a child. It may be a compulsory objective, then, for behavior analysts to critically appraise parent behavior, to avoid ascribing to explanatory rationales, and to identify key variables that effect parent behavior. When function-based analyses for grief are developed, we can work together and use the results to motivate parents and develop strong parental engagement. As a result of establishing an effective, collaborative rapport, parents and behavior analysts can contact the many conditioned reinforcements related to child success.