A Literature Review of the Parental Well-being and Children with Autism Spectrum Disorder Essay Example
Autism spectrum disorder (ASD) cases affect roughly one out of every 110 American children under the age of eighteen, adding up to roughly 2.8 million people with ASD (Johnson et al., 2011). The families affected by this disorder, especially the parents, show the highest levels of stress-related problems of all families affected by children with developmental disabilities (Rao & Beidel, 2009, p. 438). An abundance of parents raising children with autism find solace in online blogs and group chats of other parents in similar situations. The parents of autistic children look for people who will understand their struggles and their victories and solace in forums such as online blogs and community group settings of other parents in similar situations. The purpose of this review is to focus on the stress levels of the parents and teach them communication skills via group and one-on-one discussions. The intention of gathering this information is to create a program for parents to attend in order to assist them in increasing their knowledge of autism spectrum disorder and to improve the parents’ ability to communicate with each other and effectively raise their children.
Review of Literature
Research on autism spectrum disorder’s effect on families states that families are impacted by the experience of having a child with autism. The risk factors are higher levels of depression, anxiety, and pessimism of the parents. To reduce these risks, the protective factors involve family functioning and the support that comes from it. The implications of these risk and protective factors will inform the practice of Family Life Education to address parenting strategies that seek to improve the parenting experience.
Autism, as defined by Altiere and von Kluge (2009), is “low social functioning, impairment in communication, and aggressive and self-destructive behaviors” (p. 83). The characteristics of the disorder allow for “unique challenges and stressors” that the family must endure because autism is rather ambiguous, chronic, and in some cases, severe (Altiere & von Kluge, 2009, p. 83). Because of these challenges, the family must learn to adapt to new situations and develop various coping methods that are synonymous with the development of the child. Developing effective coping strategies and avoiding problems with adaptation is a major stressor for parents (Gau et al., 2011, p. 264), because it requires constant effort and work. While it is natural for families to constantly adapt to events that affect them, typical families do not have to come up with different coping strategies for the everyday events they encounter.
Decision Making as a Stress Factor
Another stressor for the parents, according to Johnson et al. (2011), is the decision making that comes with caring for their child. While the parents are adapting to their child’s chronic disability, they should also be working together to manage the situation. However, each parent might have differing views regarding how to care for the child. Parents may have different expectations for their future as a family unit or they have different plans for how to meet their expectations (Johnson et al., 2011).
The stress caused by this disability leads to negative effects on the lives of the family members. Rao and Beidel (2009) state that 66% of primary caregivers of families of children with autism report that the stress can affect time for family activities and the ability for the family to be spontaneous or flexible. Families must also adapt their work lives, with, in most cases, fathers having limitations on where they can work and mothers having limitations on their ability to work at all (Rao & Beidel, 2009). Their lives revolve around the development of their child with autism, and their careers, or lack thereof, must reflect that.
In addition to career-related stressors, parents’ social supports are impacted as well. Some families are forced to give up their social lives because parents would rather isolate themselves rather than face the social repercussions as a result of their child’s behavior (Rao & Beidel, 2009). Families participate in fewer recreational activities, leading to less independence, especially in terms of self-reliance and decision-making (Gau et al, 2011; Rao & Beidel, 2009).
Overall, raising a child with autism spectrum disorder puts parents under a great deal of stress. Their health suffers mentally and physically because they are focused on their child rather than themselves and their individuality. The disorder seems to become the identifying factor of these families (Rao & Beidel, 2009).
Although there is limited research on the protective factors of for parents of autism spectrum disorder, supporting the family functioning through ecomovics, safety, and communication are important (Altiere and von Kluge, 2009; Johnson et al., 2011). Communication is key to having a healthy lifestyle within these families. For example, parents should discuss their expectations and actually understand what it is that the other parent wants (Johnson et al., 2011). If parents are able to understand what the others’ goals are and what they want their future to look like, it is easier for parents to agree on a plan of action and begin to work towards their future. Parents that have similar views in this aspect are likely to be less stressed about their future. They are also less likely to argue about this topic, which can lead to higher rates in marital satisfaction.
Altiere and von Kluge (2009) focus on improving the family function in order to improve the quality of life for the families. The family functioning is defined as the support that parents give their children in terms of economics, safety, and communication (Johnson et al., 2011). Each of these aspects contribute to a state of equilibrium for families that consists of cohesion and adaptability. A well-functioning family can restore equilibrium in the system if they have social support, acquire a variety of coping behaviors, and be able to interpret situations in different ways to get a fresh look at problems (Altiere and von Kluge, 2009).
It is also important to consider the child with autism in the family system (Rao & Beidel, 2009). Both the internalization, behaviors related to mood and anxiety disorders, and the externalization, behaviors related to social reclusiveness, of the problem behaviors are a cause for parental stress (Rao & Beidel, 2009), so families must work with clinicians in order to improve the behavior of the child. Rao and Beidel support the theory that it is important to focus on the behavior of the child over time. Familial stress levels of families of children without severe behavior problems actually decrease as the child matures, while stress levels of children with severe behavior problems remain consistent throughout maturity (Rao & Beidel, 2009).
A strategy to address stress in the family system is through support If parents have better mental health and the children are better able to control their behavior, the stress level of the household as a whole decreases significantly. As the stress level decreases, the quality of life increases. Symptoms of depression, anxiety and pessimism will decrease and, as reported, parents will have a higher quality relationship with their children and are more capable of coping with their parenting tasks (Gau el al., 2011, p. 264).
Overall, the quality of life within the family system is just as important as the development and behavior of the children. As parents experience parenting with their child and co-parent, they experience depression, anxiety, and pessimism. To reduce these, parents should engage in improving family factors and supportive communal groups.
I am choosing to focus my program on parents’ needs to create goals for their futures regarding their child(ren) with autistic spectrum disorder, to line their goals up with those of their partner, and to create a working plan to achieve those goals. I will begin the program by holding an informational session and discussion to help all parents reflect on what it means to have a child with autistic spectrum disorder, how they can improve their behavior and quality of life, and how to ensure the regularity of their lives this diagnosis. Within this last step, parents will work to create their goals and plans to achieve these goals.
Alder-Baeder, Higginbotham, and Lamke (2004) focus on the importance of positivity within the relationships, stating that positive expressions and affectionate and supportive behaviors can lead to higher marital quality and strengthen the identity as a relational couple (Reviewing section, para. 3). Working with parents to improve their identity as a couple will eventually improve their communication with each other. As communication improves, the marital system can create a clearer goal of what they want their future as a family system to look like and will better agree on how to get there. Looking through the lens of the family systems theory, one aspect of the family can affect the family system as a whole (Merrifield & Gamble, 2013, p. 513). Based on this theory, if the marital quality increases, the relationship between the parents and the children will improve as well.
One strategy in encouraging parents to discuss their struggles is setting up an affinity mapping activity (Gonzalez, 2015, Low-prep section, para. 1). Instructing parents to write down each of their struggles and then grouping them together based on common themes will not only allow them to see they are not alone in their struggles, but also give the facilitator a starting point to begin addressing these problems. The importance of the facilitator and their accurate starting point is addressed in the 2018 article about facilitation skills, stating facilitators are a “guide to help people move through a process together” (para. 4). The basis of what will be discussed in later sessions comes from this first discussion, to ensure that the program is effective, efficient, and engaging (Merrill, 2009).
Research shows that the main issue in families with children with autism spectrum disorder is conflict between parents due to unaligned plans for the future and conflict with the children due to behavioral issues. These risk factors guided the creation of a program that will encourage parents to think more positively about their situation and to learn communication skills necessary to developing a work plan for the future that matches the wishes of both parents. Focusing on the risk factors and using them as points for discussion allows, over the course of the program, for the facilitator and the parents to turn those risk factors into protective factors.