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Resilience's Effect on Stress: For Parents of Children with ASD

Growing up, we often viewed out parents as superheroes capable of anything and everything. Only as we grow older do we realize how hard they have worked to make sure we had a good and comfortable childhood. There are many words to describe this, but the most fitting is resilience. We know that resilience is what helps people overcome hardships, but how exactly can it help and what tools are necessary?

For parents of children with autism spectrum disorder, it has been made abundantly clear how hardships and stress affect the lives of them and their families. A research article titled “The Relationship Between Parenting Stress and Parental Burnout Among Chinese Parents of Children with ASD: A Moderated Mediation Model” discusses these issues, directly researching the relationships between parental stress, parental burnout, and resilience with regard to autism spectrum disorders, and clearly defining how resilience aids in less stress and burnout. 

Three measures were used when conducting the research for this study: 

Parenting Stress Index - Short Form (PSI-SF)

This form involves a 36-item questionnaire where participants utilize a 5-point scale (1= strongly disagree, 5=strongly agree) to answer each question (Liu et al., 2023). For this questionnaire, a higher score correlates to higher stress levels. 

Parental Burnout Assessment

This form involves 7 statements that parents rate on a 7-point scale, with 0=never and 6=everyday (Liu et al., 2023). For this assessment, the higher score correlates to higher rates of burnout. 

Connor Davidson Resilience Scale 

This form involves 25 statements that parents rate on a 5-point scale, with 0=not true and 4=very true (Liu et al., 2023). For this assessment, higher score correlates to higher resilience. 

The results of this study indicated that parental stress likely increases parental burnout  (Liu et al., 2023). Further, the results indicated that parental burnout was heavily associated with a lower level of resilience (Liu et al., 2023). 

The data from this study makes it clear that resilience is key in reducing parental stress and burnout. However, some parents may be unaware of how to reduce their stress and burnout. In the American Psychiatric Association’s article titled “Building Your Own Resilience”, readers are given tips and tricks on the types of activities to engage in when attempting to increase their overall resilience. Two points from the APA article stick out the most when correlating them to parental stress levels and burnout: building connections and seeking help (American Psychiatric Association, 2020). 

The questions and statements that parents responded to in the study revolved around the idea of giving up and reflecting on their beliefs regarding their effort as a parent.

When we consider how to build connections with others in regards to these parents' experiences, building connections may look like joining a support group and talking with people within your community about your experiences (American Psychiatric Association, 2020). 

When we consider how to seek help, this may look like attending one-on-one or family therapy to look into how the family structure can be altered to ensure that everyone has a good balance of responsibilities (American Psychiatric Association, 2020). Further, seeking help may look like turning to professionals like doctors, psychologists, behavior analysts, occupational therapists, or speech pathologists for guidance on how to better manage and understand your child's strengths and deficits. 

While the results of this study may not be surprising or give a lot of substance, it stands as a reminder to readers that the hardships they may experience during their lives with regard to autism spectrum disorders are likely shared universally. Further, it emphasizes the importance of increasing one’s own resilience. Through the APA’s article about resilience, readers are able to also learn the tools necessary to increase their resilience, overall providing families with clear information on how to reduce parental stress and parental burnout.

References 

American Psychiatric Association. (2020). Building Your Resilience. https://www.apa.org. https://www.apa.org/topics/resilience/building-your-resilience 

Liu, S., Zhang, L., Yi, J., Liu, S., Li, D., Wu, D., & Yin, H. (2023). The Relationship Between Parenting Stress and Parental Burnout Among Chinese Parents of Children with ASD: A Moderated Mediation Model. Journal of Autism and Developmental Disorders, 54(4), 1527–1537. https://doi.org/10.1007/s10803-022-05854-y 

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Stresses Effects on Quality of Life: For Parents of Children with ASD

Parents often experience stress related to their children. However, how this stress affects a parent’s quality of life is not well recognized. It seems a bit harsh to talk about how parents experience a lower quality of life than others, but it is important to research so we can find solutions and bring awareness to the hardships parents face. The researchers of  “Parental Quality of Life and Impact of Multidisciplinary Intervention for Children with Autism Spectrum Disorders: A Qualitative Study “ did just that. By conducting a thematic analysis from the information provided during semi-structured interviews regarding parental quality of life as a whole, as well as parents' thoughts about interventions with regard to their quality of life, researchers were able to conclude how to better help parents experiencing a lower quality of life. 

Results

Three themes were identified relating to the concept of parental quality of life: 

ASD Impact on Quality of Life

Useful External Resources

Quality of Life improvement-related factors

Five themes were identified relating to parents views of interventions: 

Positive Impact of Intervention on Parents Lives

Effects of Parental Involvement 

Intervention Features Considered Useful for Parents 

Treatment Dissatisfaction 

Critical Issues 

For clarity, below are detailed descriptions of each theme. 

Parental Quality of Life

ASD Impact on Quality of Life

Researchers found that some parents reported a negative impact on their mental and physical wellbeing. One parent spoke out about how they were forced to leave their job after their child’s diagnosis, leading their overall wellbeing to be negatively affected (Fante et al., 2024). Further, research showed that most parents experienced relationship issues with their partners. One parent implied that while they had an understanding of kids causing relationship issues, ASD being a part of their lives caused a lot more. 

It was also found that parents were often rethinking their lifestyle choices and plans, which one parent explain that they have had to make significant changes in the activities they involve themselves in as well as the types of vacations they may go on (Fante et al., 2024). Daily life limitations were also founded from this research, with parents relaying that they did not want to go out to eat, enjoy family places like theme parks and arcades, and even avoiding birthday parties (Fante et al., 2024) . 

Useful External Resources

Overall, researchers found that parents found close partner/spouse relationships, the presence of other siblings in the family, as well as family and friend support to be the most useful and positive resources in relation to their quality of life (Fante et al., 2024). 

Quality of Life Improvement-Related Factor 

Researchers found that well-organized family routines and responsibilities were common in improving parents' quality of life (Fante et al., 2024). This could look like help with drop off and pick up from school, therapy, or other activities. Further, it was found that parents engaging in self care activities seemed to also improve parents’ quality of life (Fante et al., 2024). Finally, a child’s growing independence through treatment was a major factor in the improvement of parents’ quality of life (Fante et al., 2024).  

Parental Views on Intervention

Positive Impact of Intervention on Parents Lives

Enhanced communication with their child seemed to be a shared positive impact of interventions (Fante et al., 2024). Further, parents reported feeling a reduced sense of loneliness, becoming more aware of how others are going through similar struggles and doubts (Fante et al., 2024). It was also concluded that parent’s utilizing professionals and their care network as a resource created a more positive experience (Fante et al., 2024). 

Effects of Parental Involvement

Overall, researchers found that actively participating and collaborating about their child’s goals and treatment granted parents with more understanding and acceptance (Fante et al., 2024). 

Intervention Features Considered Useful for Parents  

Researchers found that networking to find the best possible treatments and interventions seemed to be extremely useful (Fante et al., 2024). This also was useful in the sense that networking allowed parents to find other types of support. Parent training was another useful feature found in this study, with the explanation that it allows parents to better understand their child’s progress and deficits (Fante et al., 2024).  Parents also reported that generalization of new skills in treatment to other parts of their life (such as the home, at school, etc.) was extremely important and useful (Fante et al., 2024). 

Treatment Dissatisfaction

Treatment dissatisfaction involved factors such as a high turnover rate of professionals involved in their child’s treatment, seeing their child fail to achieve their set goals, and the absence of parent’s involvement in treatment and intervention plans (Fante et al., 2024). 

Critical Issues 

Two environments were considered factors of critical issues according to parents in this study: social environment and school/clinic environment. 

Social environments were grounds for children being unaccepted, parents experiencing low levels of financial support, and a lack of support services directly created for families of children with ASD (Fante et al., 2024). 

School/clinic environments potentially had professionals with a lack of training, high turnover rates for employees, or a lack of resources for their child to grow and learn (Fante et al., 2024). 

Overall, it can be concluded that parental involvement is key in improving a parent’s quality of life with regard to a diagnosis of autism spectrum disorder. Not only does being involved give parents to understand their child’s strengths and deficits more deeply, but it also encourages seeking and utilizing support from others. 

This study recognizes the difficulties parents may face following their child’s diagnosis of ASD. However, the importance of this study lies in the fact that it allows parents to understand that they are not alone in the aspects they find to be most difficult, and should look to seek out guidance and support to further enhance their sense of involvement. Further, it demonstrates the many factors that contribute to a higher quality of life following an ASD diagnosis, leaving parents to be hopeful for their future.

References 

Fante, C., De Luca Picione, R., Dioni, B., Manari, T., Raffin, C., Capelli, F., Franceschini, C., Lenzo, V., & Musetti, A. (2024). Parental Quality of Life and Impact of Multidisciplinary Intervention for Children with Autism Spectrum Disorders: A Qualitative Study. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-023-06225-x

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Culture's Contribution to Stress: For Parents of Children with ASD

Growing up in a Hispanic household, it was often very clear that mental illness and neurodiversity were not “real.” There were countless times I would hear my parents and grandparents talk about how they could not understand how some children could be “so different” from others. From conversations with some friends who also come from a Hispanic household, it became clear that these ideologies were similar across the board. 

 I want to be clear that they were never mean or hurtful about these issues purposefully, rather they had very little knowledge of the subject. As the years have gone by and more information about neurodiversity and mental illness has become more available, they have gained a better understanding of these issues. And while this is just my experience, there are countless others who also experience things similar. Specifically, a research article titled “Mother's Adjustment to Autism: Exploring the Roles of Autism Knowledge and Culture” explores how culture affects one’s view of autism and the effectiveness of being informed with regard to cultural differences. Through this study, researchers learn about how culture creates barriers of understanding, and how we can move forward in changing those cultural ideologies. 

To conduct their research, researchers utilized ASD organizations such as parent support groups and service agencies to recruit mothers to participate (Gordillo et al., 2020). Of the women recruited, a group of 20 culturally diverse mothers were chosen for this study (Gordillo et al., 2020). Interviews were conducted in a moderately structured interview in person in a location that worked best for each mother specifically (Gordillo et al., 2020). 

The interviews were created in both English and Spanish asking questions regarding their child’s ASD symptoms, their experiences with having a child with ASD, and the future expectations of their child with regard to their ASD diagnosis (Gordillo et al., 2020). These interviews also assessed the mother’s knowledge of ASD and their experiences with ASD with regard to their culture (Gordillo et al., 2020). 

Results

Results indicated that 12 out of 20 mothers a part of this study were born outside of the US. It was also indicated that Latina mothers made up the majority of participants, driving this study to focus on the experiences of Latina mothers more than mothers from other cultures (Gordillo et al., 2020). 

For better understanding of the results from interviews, the will be place into their respective sections: 

Mother’s Knowledge of ASD 

Initial Exposure to ASD Knowledge 

Most US-born mother reported having hear of the term “autism” at least once prior to the child’s diagnosis. Meanwhile, all immigrant mothers reported that they never heard about autism prior to their child’s diagnosis (Gordillo et al., 2020). According to these immigrant mothers, it was widely believed by their communities that children outside of the US did not have and could not have autism. When asked about this further, there was a small number of immigrant mothers that reported hearing the term “autism” at least once, but brushing it off as they considered it to be a “US-only” disorder (Gordillo et al., 2020). 

Beliefs Regarding the Cause of ASD

When asked about what they believed about the causes of autism spectrum disorder, the majority of US-born mothers stated that genetics and older age were the cause of ASD (Gordillo et al., 2020). These mothers also emphasized that vaccines were not a cause of ASD (Gordillo et al., 2020). 

Immigrant mothers gave a multitude of causes including delivery complications, genetics, maternal health, contaminated foods eaten during pregnancy, and God. They also reported blaming themselves and feeling guilty for not doing enough to prevent their child from being diagnosed (Gordillo et al., 2020). 

General Knowledge of ASD Symptoms 

It was concluded that all mothers had the same understanding of the symptoms of autism spectrum disorder. 

Mother’s Acceptance of ASD

Non-Latina Mothers

Overall, non-Latina mothers reported acceptance of their child’s diagnosis immediately/soon after their initial diagnosis (Gordillo et al., 2020). 

There were 2 underlying motivators for acceptance:

motivation to receive appropriate services  

a sense of empowerment felt when learning about ASD. 

Latina Mothers 

Most Latina mothers were still in-between accepting and doubting the accuracy of their child’s diagnosis (Gordillo et al., 2020).

 There were 4 underlying causes for this: 

minimizing the implications and severity of ASD

experiencing self-blame

distrusting the diagnostic process

experiencing rejection and stigma from the Latino community

When further assessing Latina mother’s acceptance, researchers found that most mothers did not integrate what they knew about ASD with their child’s behaviors. Further, Latino mothers were found to associate symptom improvement with ASD to be their child outgrowing or being cured of ASD (Gordillo et al., 2020).  

This study clearly demonstrates how culture plays as an enormous factor in autism acceptance. It can be concluded that this is not uncommon for Hispanic and Latino families, and I can speak from experience that this is a huge issue. “Unseen” disabilities are often forgotten or brushed off as nothing by those in my community. Despite information from doctors and therapists, it is still hard for people to believe and come to terms with a diagnosis of ASD. 

With that in mind the importance of this study is clear: being aware of these potential barriers and assumptions will result in more meaningful acceptance. To ensure that this happens, culture should be integrated when professionals are considering and presenting information. Professionals should also emphasize the importance of connecting with other families in similar situations, and connecting families with therapists and doctors who come from the same culture. 

References 

Gordillo, M. L., Chu, A., & Long, K. (2020). Mothers’ Adjustment to Autism: Exploring the roles of autism knowledge and culture. Journal of Pediatric Psychology, 45(8), 877–886. https://doi.org/10.1093/jpepsy/jsaa044

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Factors Contributing to Stress: For Parents of Children with ASD

There is no doubt that all parents experience stress. Whether it be getting your child ready for school, making sure to pick them up from activities on time, or even just making sure they took a bath; parental stress is inevitable. There are also more serious factors, such as financial status, the parents age, and familial situations. For parents of children with autism, however, there are many factors that cause stress. "The Need for an Ecological Approach to Parental Stress in Autism: The combined Role of Individual and Environmental Factors��� explores the different types of factors that contribute to parental stress in relation to autism spectrum disorder. 

Researchers utilized data taken via questionnaires to come to their conclusions. A total of 115 parents were enlisted to complete this questionnaire, with the expectation that their child was between the ages of 3 and 10 years old (Derguy et al., 2016). 

The results of this study concluded that 70% of parents reported high stress levels (Derguy et al., 2016). There was no indication of children’s individual characteristics correlating with parental stress, but there was a correlation in parents' ages. It was concluded that younger parents experience higher stress levels than older parents (Derguy et al., 2016). Further, it was concluded that family context plays a huge factor in parental stress. Things such as parent-child interactions resulting in high emotions, poor quality of parent-child interactions, and poor quality of parent-grandparent interactions resulted in high stress levels in parents ((Derguy et al., 2016)). Additionally, an early diagnosis and lack of schooling for a child contributed to high stress levels (Derguy et al., 2016). 

These results indicate that better relationships with grandparents and mediation between parents and children would likely decrease parental stress levels, especially when parents are considered “young parents.” To combat this, adequate resources regarding familial issues should be provided by doctors and other professionals during the diagnosis and treatment process. 

This article demonstrates the importance of ensuring relationships with your children and close family members are at the forefront of a parents journey through understanding their child’s diagnosis. Further, it allows professionals to understand how to better present resources for parents by considering these factors during meetings and appointments. It also acts as a reminder for parents that some struggles are universal, meaning that while they may feel alone in their journey they are likely not the only one going through hardship, ultimately reducing the challenge of finding support.

References 

Derguy, C., M’Bailara, K., Michel, G., Roux, S., & Bouvard, M. (2016). The Need for an Ecological Approach to Parental Stress in Autism Spectrum Disorders: The Combined Role of Individual and Environmental Factors. Journal of Autism & Developmental Disorders, 46(6), 1895–1905. https://doi-org.proxy.bsu.edu/10.1007/s10803-016-2719-3

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Coping Strategies: For Parents of Children with ASD

Experiencing stress as a parent is a universal experience. How parents handle stress, however, is assumed to vary based on their circumstances. Some parents feel a sense of loneliness that drives them to isolate themselves from others, while other parents look toward their community, friends, family, and others with similar experiences for guidance and comfort. 

Parents of children with autism spectrum disorder are no exception to this, and they all share a unique experience. While their child’s diagnosis is not life threatening, it can be life altering and lead to intense stress. Their unique experiences do not mean that they all cope the same, however. “Coping strategies of parents of children with autism spectrum disorder: a systematic review” looked to review the different coping strategies parents utilize to combat stress. To do so, this study explores the coping strategies of parents by assessing already-existing parental coping strategies questionnaires, looking into factors that influence coping strategies, analyzing the interactions between those strategies and perceived stress, ultimately determining the impact on parental quality of life (Vernhet et al., 2018). 

There were procedures put in place to ensure there was accuracy and viability of results, as well as to ensure that literature chosen would have content specific to their research. 

Below is a list of procedures and criteria considered when creating this study.

Procedures for finding studies: 

Studies were published in English or French only

Studies were chosen only from 3 databases: PsycInfo, Medline, and ERIC

Keywords used during search included: autism spectrum disorder(s), child developmental disorders, pervasive, coping behavior, coping, parent(s)

Inclusion criteria: 

Only qualitative studies and original research articles were chosen

Samples had to include parents having a child diagnosed with ASD through the use of ICD-10, DSM-IV-TR, DSM-5 criteria, or the ADI-R

Children in studies must have been under 18 years old

Studies utilized standardized and validated parent coping strategy questionnaires 

Factors that excluded some studies are as follows: 

Studies that focused on parental training programs or validation tools

Samples including parents of children with a condition other than ASD

Studies focused on intervention 

Pharmaceutical studies

This study concluded that parents of children with ASD use more avoidance strategies and less support-seeking strategies than those with typical children (Vernhet et al., 2018). Further, this study concluded mothers use more emotion-focused coping and social-support seeking than fathers(Vernhet et al., 2018). It was additionally concluded that parents with a lower ability to handle stress tend to blame themselves in the presence of stressful situations, whereas parents with a higher ability to handle stress tend to utilize social-support seeking and self-control strategies (Vernhet et al., 2018). Ultimately, it can be concluded that those who engage in avoidance and self blame have a lower quality of life than those who engage in social-support and self-control strategies.

From these findings, we can assume that there is not a good presentation of resources for parents following a child’s ASD diagnosis, which has resulted in the overuse of avoidance strategies and multiple testimonies of self blame when presented with stressful situations. 

The importance of this study is much deeper than being informative for students and professionals. This study is also beneficial for parents and those questioning why parents with children diagnosed with ASD have such a hard time coping. It allows readers to understand these avoidant coping strategies are not based solely on personal opinion. Rather, a lack of educational resources and potential public stigma make engaging in confrontational coping strategies more difficult - especially if a parent cannot appropriately handle their stress. 

With this in mind, we can begin advocating for better resources to be presented to parents following their child’s ASD diagnosis. We can also ensure that parents understand that they are not alone in their stress. It is clear that other parents experience the same hardships and doubts, and that should be emphasized when informing parents of potential resources. 

References 

Vernhet, C., Dellapiazza, F., Blanc, N., Cousson-Gélie, F., Miot, S., Roeyers, H., & Baghdadli, A. (2019). Coping strategies of parents of children with autism spectrum disorder: a systematic review. European Child & Adolescent Psychiatry, 28(6), 747–758. https://doi-org.proxy.bsu.edu/10.1007/s00787-018-1183-3