Siblings of Individuals with Autism

Research, support, and conversations regarding children with autism often center on the child with the diagnosis. However, research also shows us that an autism diagnosis can impact the entire family unit. Quatrosi et al. (2023) remind us of the importance of understanding this research and attending to the experiences of siblings in particular in order to support them individually and the greater family. 

Their review examined studies of siblings of individuals with autism and their quality of life. Quality of life (QoL) is defined as referring to a “person’s perspective of their life situation, cultural and value background, objects, expectations, and standards. 

The studies reviewed show that siblings of autistic children may be at greater risk of social and behavioral challenges. Aggressive behavior was specifically found to be higher in siblings of individuals with autism than in siblings of individuals with chronic disease. Quality of life for siblings of autistic individuals was also found to be further impaired in this cohort than in that of siblings of individuals with speech disorders. Additional findings include higher levels of conflict-proneness, anxiety, stress, and reduced psychological well-being. Interestingly, the anxiety was associated with parental anxiety, independent of demographics or perceived social support. Siblings of individuals with autism are more likely to develop depression than siblings of individuals with an intellectual disability.

The Siblings Experience

Several of the studies in the review asked the siblings directly about their feelings and experiences. Some siblings identified feelings of frustration due to greater parental attention toward their siblings. One challenge described by siblings of children with Autism is the difficulty in explaining their experience and struggles with others outside the family. Less positive attitudes about their relationship with their siblings with autism were found compared to those of individuals with siblings with intellectual disabilities.The review highlighted an interesting gender interaction. Sisters of children with autism had higher scores of anxiety and depression than their brothers. When siblings were asked about their feelings of living with their sibling with autism, brothers discussed wanting more play with their sibling, as well as concerns about aggressive behaviors. Sisters commonly reflected on the relational and communication challenges with their autistic siblings.  

Age also plays a role in individuals’ experiences with their autistic siblings. Younger siblings reflect more on their experience of play with their siblings, while older siblings reflect more on feelings of responsibility and protection. Coping strategies also appeared to shift over time, with adolescents relying more heavily on emotion regulation and adults on problem-solving coping. 

Positive Protective Factors

On a positive note, recent studies have pointed to positive protective factors that support a family unit after an Autism diagnosis is given. These include greater family support and increased capacity for empathy and introspection. Health-related quality of life was found to be associated with perceived social support independent of demographics or the physical or psychological health of the parent. For providers, educators, and support teams working with families with individuals with autism, these findings reinforce the value of a family-centered approach. it is imperative for siblings' health-related quality of life. When families receive support, they are in a better position to support the siblings. Increased capacity for empathy and introspection as a protective factor is especially applicable to older siblings of children with Autism. It would be beneficial for family and supports to recognize and reinforce this skillset, and nurture it over time.

Reference:

Quatrosi, G., Genovese, D., Amodio, E., & Tripi, G. (2023). The quality of life among siblings of autistic individuals: A scoping review. Journal of Clinical Medicine, 12(3), 735.

Amanda Ross, Senior Behavior Specialist, Miren Behavior