Why do parents feel shame or guilt when their child is diagnosed with Autism? Can social responses be a cause?

Marcinechová, D., Záhorcová, L., & Lohazerová, K. (2023). Self-forgiveness, Guilt, Shame, and Parental Stress among Parents of Children with Autism Spectrum Disorder. Current Psychology, 43.

 https://doi.org/10.1007/s12144-023-04476-6

 

American Psychiatric Association. (2019). Autism Spectrum Disorder. Psychiatry.org.

 https://www.psychiatry.org/patients-families/autism



Parental Guilt and Shame

  1. Some parents may feel embarrassed because of how society reacts to behavior that can seem aggressive in public. This embarrassment often comes from the severity of the child's autism. It arises from a general lack of understanding and education among the public. Many people do not grasp what a child or adult goes through during a breakdown. (Marcinechová, D., Záhorcová, L., & Lohazerová, K., 2023) explain the discomfort felt by someone with autism can depend on factors like loud noises, bright lights, crowds, various colors, strong smells, new faces, and unexpected demands. Some parents whose children are diagnosed with autism, whether early or later in life, may develop feelings of guilt. These parents often blame themselves for their child's autism (Guilt and Shame experiences of parents of children with ASD1.2). 

 

  1. When parents feel misunderstood or alone, they can begin to feel a form of embarrassment because others in public do not show compassion but disturbance. Parents who do not require emotional and physical support from their family or community gravitate towards social cues that others portray onto them because they are not being supported as they should be. Parents who lack support and understanding from others may feel embarrassed and become sensitive to negative social judgments. Adding to this self-consciousness follows burnout. For instance, a reference from an article titled “Self -forgiveness, guilt, shame, and parental stress, among parents of children with autism spectrum disorders" is a combination of qualitative and quantitative methods that was employed to investigate and contrast self-forgiveness, guilt, shame, and parental stress among parents of children diagnosed with autism spectrum disorder (ASD) and parents of neurotypical (NT) children. The information was gathered using the Heartland Forgiveness Scale (Thompson et al., 2005) and the Guilt and Shame Experience Scale (Maliƈáková et al., 2019). The research sample consisted of 143 parents of children with ASD and 135 parents of NT children.
  2.  The results of the regression analysis indicated that guilt, shame, and self-forgiveness accounted for 23% of the variation in parental stress, with self-forgiveness being the sole significant negative predictor. About 23% of the differences in parental stress among parents of children with autism can be explained by their ability to forgive themselves. Parents who practice more self-forgiveness usually feel less guilt, shame, and stress. This finding suggests that promoting self-compassion and reducing self-blame may significantly improve parents’ emotional well-being. As a social worker, this finding highlights the ethical responsibility to uphold clients’ dignity, worth, and well-being, as emphasized in the NASW Code of Ethics. Understanding that self-forgiveness plays a key role in parental well-being calls for engaging with parents empathetically, without judgment, and with cultural humility, while affirming their unique experiences. Supporting parents as they navigate guilt and shame aligns with the core values of service and social justice by alleviating emotional burdens that stigma and lack of support can worsen. Interventions that encourage self-compassion and emotional validation help safeguard clients’ right to self-determination and bolster their resilience. Since self-forgiveness accounts for a substantial part of parental stress, incorporating it into practice demonstrates ethical, strengths-based, and evidence-based social work—even as we recognize the many systems and factors shaping families’ lives.

 Additionally, shame acted as a mediator in the relationship between self-forgiveness and parental stress for parents of children with ASD. Parents of children with ASD frequently felt shame concerning their child's inappropriate behavior and the societal misunderstandings surrounding it. In contrast, parents of neurotypical (NT) children typically did not experience such feelings of shame regarding their parenting. Factors such as acceptance, social support, religious beliefs, and affection from their child were commonly cited as aiding self-forgiveness among parents of children with ASD. The article expresses the significance of self-forgiveness as a possible strategy for managing parental stress and proposes concentrating on the detrimental aspects of shame experienced by parents of children with ASD. 

 

  1. Throughout the research provided, it was found that Autism spectrum disorder is categorized as a pervasive developmental disorder with an unclear cause and is a condition that lasts throughout a person's life. This disorder is primarily marked by difficulties in social communication and interaction, along with notable repetitive behaviors (Daniel Moreno De Luca, M.D., MSc, pg. 1). Challenges in these domains often lead to restricted independence, necessitating continuous lifelong support, typically offered by the parents. Parents of children with Autism must manage a range of emotional and behavioral challenges, such as difficulties with sleep, attention issues, self-harm, and aggression. According to research by Giovagnoli et al. (2015), these emotional and behavioral challenges in preschool-aged children with ASD are significant indicators of stress in parents.  Children with ASD may display noticeably unusual and distinct behavioral patterns, which can occur in various social situations. Parents frequently face disapproving looks, particularly when their child's actions are deemed socially inappropriate. At times, parents of children with ASD experience criticism from others who judge their child's behavior or question their parenting skills. Given that society does not always embrace “different behavior,” this can result in stigmatization along with feelings of guilt and shame

 

  1. Caring for children with ASD daily can be demanding, particularly during their early years. Beyond exhibiting stereotypical behaviors and challenges in communication or social interactions, children with ASD might display a wide range of emotional and behavioral issues, such as hyperactivity, self-harm, sensory sensitivities, tantrums, and aggression towards others. These issues might be linked to dysfunctional family dynamics, a decline in the parents' quality of life, heightened symptoms of anxiety and depression, and elevated levels of stress experienced by the parents. Both guilt and shame are self-reflective emotions that involve negative evaluations of oneself and feelings of distress resulting from perceived mistakes or wrongdoings. The initial distinction made by Lewis (1971) indicates that “guilt is centered on the action, while shame is focused on the individual. When people experience guilt, they feel tension, remorse, and regret regarding the 'bad action taken." In contrast, when individuals experience shame, they often think diminished, worthless, and exposed. Shame frequently leads to a desire to escape or withdraw (Tangney et al., 2007). Studies have shown that guilt typically motivates reparative behaviors, such as confessing, apologizing, or attempting to make amends for the harm caused.

 

  1. Systems theory is a diversified approach that understands any entity as a whole made up of connected and interdependent parts. Instead of examining each part separately, it emphasizes how relationships, patterns, and interactions work together to shape the behavior of the entire system ( Hutchison, 2019, pg 101). This perspective emphasizes that parental stress is strongly influenced by environmental stressors, particularly negative or judgmental social reactions to children’s non-typical behaviors across everyday settings such as public spaces, family contexts, and the community (Marcinechová, Záhorcová, & Lohazerová, in press). The authors note that these repeated social interactions can intensify feelings of guilt and shame, leading to increased emotional strain, embarrassment, and frustration for parents of children with autism, especially when understanding and support from others are limited.




  1. Shame is linked to avoidance and negative parenting responses, while guilt can promote constructive actions, such as repairing harm (Marcinechová, Záhorcová, & Lohazerová, in press). Parents—especially mothers—often experience guilt and shame after their child’s autism diagnosis, amplified by stigma and negative social reactions, which increases stress. The study suggests that self-forgiveness may reduce shame, helping to lower parental stress, with shame potentially acting as a key mediator (Marcinechová et al., in press).

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