Talking to Siblings About ASD

Siblings of children with Autism Spectrum Disorder (ASD) have unique needs and may have a range of feelings, both positive and negative, about their experience with their brother or sister with ASD. They may be reluctant to share these feelings with parents due to feelings of guilt (Opperman & Alant, 2003) or concern that they will get in trouble for sharing them. However, open communication among family members has been associated with more positive adjustment for siblings (Howlin 1988; Lobato & Kao, 2002), and therefore it is very important for families to keep the lines of communication open.

Julie M. Wolf, PhD

Julie M. Wolf, PhD

There are a number of ways that parents can create an environment that encourages open communication among family members. One simple strategy is to make sure that autism is mentioned from time to time in the household. In this way, siblings will know that it is not a forbidden topic and as a result, they may be more open to sharing their own thoughts and feelings. However, it is equally important that parents initiate conversations to check in with their children. In doing so, parents should be prepared for children to share their entire range of feelings, even ones that parents may not feel are rational or valid. As difficult as it can be, it is important for parents to remain neutral and give their children the opportunity to express themselves. Parents should offer support and ask their children if there is anything they as parents could do to help with any negative feelings. Parents might end the conversation by praising their children for sharing their feelings. Creating an atmosphere in which children feel heard and supported will increase the likelihood that they will share their feelings again in the future.

It is also perfectly appropriate and beneficial for parents to share their own feelings, within appropriate limits. Children sense their parents’ feelings, and without communication, they may make their own inferences about their parents’ emotions that may be far from the truth, or they may erroneously believe that their parent is angry or upset about something they did. That being said, parents should be thoughtful about how they convey their feelings and not overburden their children with the full intensity of their own emotions.

One critical area of communication is to ensure that siblings have accurate information about their brother or sister’s diagnosis. Although their understanding matures over the course of development, research has suggested that siblings of children with ASD show delayed understanding of ASD (Glasberg, 2000). The reason for this delay is unknown, but one possible explanation is that adults in their lives assume that they are knowledgeable due to their personal experience and are thus less likely to talk to them about autism. However, when children are not provided adequate information about a diagnosis, they may invent their own explanations which may be more frightening or stressful to them than the truth (Lobato, 1993).

When it comes to sharing factual information about autism, most children will not be able to absorb large amounts of information in one sitting, so parents should focus on sharing small amounts of information at a time or just answering the specific question their child asked. Information should also be repeated over time, as children will absorb the information differently over the course of development. The way in which information is best shared will change over the course of development as children mature in their ability to process information.

For young children, language should be kept simple, and information should be tied to a specific behavior. For example, a parent might say, “Your sister is upset because she does not like the bright lights.” Young children may hold erroneous beliefs about autism (Glasberg, 2000); for example, some young children may believe that autism is contagious. Parents should always correct any false beliefs their children hold. Another strategy that can be beneficial for young children is to create a book explaining autism. Children can be involved in helping to create the book and illustrate / color its pages.

Adolescents are capable of more complex thinking and should be provided as much information as they desire. At this age, siblings may be interested in reading books or articles about autism. While their thinking and reasoning abilities have advanced, emotional development is still ongoing, and adolescence has been found to be a time of more intense and less stable emotional experiences (Bailen et al., 2018). Thus, parents should be aware that adolescents’ emotional reactions to their siblings may not be at the same level as their cognitive capacity to understand autism. Increased openness, patience, and emotional support from parents may be indicated at this age. Adolescence may also be a time when siblings are beginning to consider their own future and their role in their sibling’s adult life. Parents should respond to any questions pertaining to their future role, while being careful not to make any assumptions or communicate any pressure to assume a caretaking role. Many siblings do opt to care for their brother or sister with ASD in adulthood, but allowing them self-determination around this decision will promote more positive feelings regarding their caretaking role.

Finally, in young adulthood, parents and siblings should continue to discuss caretaking decisions, and work toward finalizing these decisions as parents age. Adult siblings also benefit from increased access to information that is essential to planning for their sibling’s future, including knowledge about financial arrangements, living arrangements, issues pertaining to legal guardianship, government benefits and other sources of aid, and therapeutic interventions and other supports that their sibling receives.

In summary, by adopting a family atmosphere of developmentally appropriate, open communication, parents will foster in siblings more positive feelings about their role as a sibling of someone with ASD, which will ultimately benefit all members of the family.

 Julie Wolf, PhD is a Licensed Clinical Psychologist and Associate Professor of Clinical Child Psychology at the Yale Child Study Center in New Haven, CT. The Yale Child Study Center offers clinical evaluation services and research into autism spectrum disorders. To learn more about our research, visit https://medicine.yale.edu/childstudy/research/clinical/autism_neurodevelopment/. To learn more about our clinical services, visit https://medicine.yale.edu/lab/mcpartland/clinical/services/. To request information about our sibling support services, visit https://tinyurl.com/yalesibshops or contact Dr. Wolf at julie.wolf@yale.edu.

References

Bailen, N. H., Green, L. M., & Thompson, R. J. (2019). Understanding emotion in adolescents: A review of emotional frequency, intensity, instability, and clarity. Emotion Review11(1), 63-73.

Glasberg, B. A. (2000). The development of siblings’ understanding of autism spectrum disorders. Journal of autism and developmental disorders30(2), 143-156.

Howlin, P. (1988). Living with impairment: The effects on children of having an autistic sibling. Child: care, health and development14(6), 395-408.

Lobato, D. (1993). Issues and interventions for young siblings of children with medical and developmental problems. In Z. Stoneman & P. W. Berman (Eds.), The effects of mental retardation, disability, and illness on sibling relationship: Research issues and challenges (pp. 85–98). Baltimore, MD: Paul H. Brookes.

Lobato, D. J., & Kao, B. T. (2002). Integrated sibling-parent group intervention to improve sibling knowledge and adjustment to chronic illness and disability. Journal of pediatric psychology27(8), 711-716.

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