Autism Spectrum Disorder and Its Effects on Family Life

By Nohelis Mena

 

This literature review was written by Nohelis Mena from Florida International University. It considers the study of typical siblings of children with autism spectrum disorder (ASD). Most research conducted regarding family life and ASD is centered around parents and their emotional state. With the few studies that have observed siblings, it has been noted that siblings of children with ASD develop empathy and patience, as well as mature mentally much sooner than their peers. Though these may seem to be considered positive outcomes to such a situation, it can also be compared to the feeling of loneliness and the role substitute parenting in which typical siblings tend to adopt.

Abstract

This literature review considers the study of typical siblings of children with autism spectrum disorder (ASD). Most research conducted regarding family life and ASD is centered around parents and their emotional state. With the few studies that have observed siblings, it has been noted that siblings of children with ASD develop empathy and patience, as well as mature mentally much sooner than their peers. Though these may seem to be considered positive outcomes to such a situation, it can also be compared to the feeling of loneliness and the role substitute parenting in which typical siblings tend to adopt.

Introduction

Individuals with autism spectrum disorder (ASD) have characteristics that are considered to be impairments in social situations. Communication has a grand effect on family members. There has been a lot of research conducted on parents with children who have ASD but there is not much information on siblings of children with ASD.  Therefore, the social, emotional, and behavioral adjustment of siblings of individuals with ASD will be considered throughout this literature review.

Siblings of individuals with ASD can also struggle with their own challenges, such as anxiety or depression. They can even experience loneliness or that the sibling with ASD is getting all the attention. It can be a lot for a child to emotionally process. Having a family member with autism can often be time consuming for everyone in the family, and very often siblings feel that their brother or sister becomes the focus of everyone’s attention. It is easy for them to feel like their parents have little time or energy left to focus on them. It is because of this series of emotions that the following literature review will assess various aspects of sibling involvement and emotional support, including the behavior of siblings of children with autism.

The roles of family members in a typical nuclear family are often established as  four different categories: marital, parental, sibling, and extended family. Each category determines how family members interact with one another and how they act at family gatherings (Turnbull et al., 2006). When discussing ASD with a professional, such as a therapist, it is crucial that the professional considers and takes the approach of all angles and possibilities when discussing the impact of ASD on a family, especially on siblings. This way effective and efficient service can be provided to the family as a whole.

Interactions that occur between siblings provide children with their first few experiences of social interaction. The interactions of sharing, compassion, friendship, and others such as rivalry or competition can be experienced in sibling relationships (Turnbull et al., 2006). Some individuals who have siblings with autism experience a loving and heartwarming relationship with their siblings; but others, however, experience conflict and loneliness (Rivers and Stoneman, 2003). It is important to recognize that age, gender, number of family members, and the severity of disability may affect sibling relationships (Stoneman, 2005).

Literature Review

Sibling relationships between typical children and children with autism can help develop traits such as maturity and patience. If a child with autism has a difficult time engaging in social situations, they can take interactions with their siblings as a form of practice for future friendships.

Many children feel protective of their sibling with autism and take a role in helping them succeed. Sometimes siblings may express what their siblings with autism may need if they are not understood. Many times parents can even struggle with this (Shu and Lung, 2005).

Sibling Interaction and ASD

Raising a child with autism can put a lot of pressure on parents as individuals and on the family as a whole. The most common demand is the lack of enough time in the day to complete. It can be quite challenging to meet the needs of the family while also making sure to meet the needs of the child with autism. Many parents feel that they need to place their life on hold to care for the child with autism and expect the same of their typical child (Verte et al., 2003). Because of this, there is tension between typical children and their parents.

According to a report by Hodapp, there are four challenges in sibling research regarding ASD (Hodapp et al., 2005). The first is the use of small samples, the second is the inability to generalize results, third is the  use of different control-contrast groups, and fourth is the necessary exploration and observation for genetic data (Hodapp et al., 2005). Most of the studies reviewed had small numbers of participants (Hodapp et al., 2005).

Though genetics can play a role in interactions of children with autism and their siblings, it is much more likely that the environment they live in and their social interactions have a greater effect on development. The results of these studies should be based on the fact that these siblings have siblings with disabilities, not that there is a genetic difference present. For instance, if the tested variable is genetic factors, the groups involved in the study should be siblings of individuals with genetic disorders and not just siblings with disabilities (Benson and Karlof 2008).

 

Siblings, ASD, and Cultural Issues

In the research, Hodapp stated that most of the studies conducted on siblings are set on families of European descent living in the United States and that other cultures are often not included when focusing on siblings of children with disabilities (Hodapp et al., 2005). This narrows the views of typical siblings and their interactions with their disabled siblings rather than comparing them cross-culturally.

Many cultures place different family members in different positions. For example, in the Latin culture, the father is the provider, the mother creates and maintains the home, and the older sister helps care for the other family members. Based on the typical Euro-American families that were studied, the samples and results cannot necessarily be compared to minority families with children with disabilities. It is likely that the typical siblings in these different cultures are having different experiences. More research is needed on families that identify with different cultures.

However, one thing that can be seen in siblings across all cultures is empathy (Stoneman, 2005). The siblings in different cultures may experience a different home laugh from each other, but empathy can be seen when they spend time or care for their sibling with autism (Verte et al., 2003). This also shows how strong of a bond can be formed between siblings.

Conclusion

Studies have shown that having a sibling with ASD positively affects typical siblings. Though at times they have feelings of loneliness, they thrive in being empathetic and caring to others. It is clear that most research on families with children who have autism is conducted on the parents. More research is needed on typical siblings and of different cultural backgrounds and socioeconomic status. Families in poverty may place more stress on the typical sibling unintentionally, whereas a family of higher socioeconomic status may have more resources available to them and deal with less stress. Rather than forcing siblings to be caretakers, they should simply be siblings who also happen to help care for their siblings. They should be allowed to form the relationships brothers and sisters feel comfortable with instead of being taught to be like parents to their siblings.

References

Benson, P., & Karlof, K. L. (2009). Anger, stress proliferation, and depressed mood among parents of children with ASD: A longitudinal replication. Journal of Autism and Developmental Disabilities, 39, 350–362.

Hodapp, R. M., Glidden, L. M., & Kaiser, A. P. (2005). Siblings of persons with disabilities: Toward a research agenda. Mental Retardation, 43(5), 334–338.

Rivers, J. W., & Stoneman, Z. (2003). Sibling relationships when a child has autism: marital  stress and support coping. Journal of Autism and Developmental Disorders, 33, 383–394.

Shu, B. C., & Lung, F. W. (2005). The effect of support group on the mental health and quality of life for mothers with autistic children. Journal of Intellectual Disability Research, 49(1), 47–53.

Stoneman, Z. (2005). Siblings of children with disabilities: research themes. Mental Retardation, 43(5), 339–350.

Turnbull, A., Turnbull, R., Erwin, E., & Soodak, L. (2006). Families, professionals, and exceptionality: positive outcomes through partnerships and trust (5th ed.). Upper Saddle River: Merrill/Prentice Hall.

Verte, S., Roeyers, H., & Buysse, A. (2003). Behavioural problems, social competence and self-concept in siblings if children with autism. Child: Care, Health & Development, 29(3), 193–205.