Autism spectrum disorder (ASD) is defined as a neurodevelopmental disorder characterized by social, behavioral, and communication challenges that often persist across the lifespan (American Psychiatric Association, 2022). About 1 in 31 children has been identified as meeting diagnostic criteria for ASD according to estimates from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network. The term “spectrum” is utilized to describe the wide range of symptom presentations individuals can experience (National Institute of Mental Health [NIMH], 2018). Differences in communication, emotional expression, and dysregulated behaviors arising from these challenges can place tremendous strain on the families of children with ASD (Gray, 2006). Thus, there is growing recognition and expansion of research addressing the importance of parental and sibling mental health in families of children with autism.
The emergence of these findings has shifted the focus from solely addressing the needs of the child with ASD to incorporate the family. Analysis of research on parent and sibling mental health as well as targeted intervention approaches indicate certain common themes that mediate stress and improve overall functioning. Trends in research identify the following factors that support parents, siblings and the individual with ASD.
Understanding ASD
For both parents and siblings, the first step is to develop a deeper understanding of autism in general. As clinicians, it’s important to educate families on the nature of ASD as a neurodevelopmental disorder and to ensure that although there is no “cure”, there are many things that families can do to support their loved ones and to foster hope for the future. Understanding their loved one is the first step in providing that support.
ASD is a unique diagnosis, and it can be helpful to remind families that there are many layers to symptom presentations, with individuals with ASD often having a combination of symptoms both seen and unseen. For some, using an illustration of an iceberg can be helpful to provide clarity of how these symptoms may exist for their child. Some visible symptoms (behavioral stereotypies, meltdowns, elopement, etc.) may be the “tip of the iceberg”. Underneath, individuals with ASD may also face unseen factors, such as struggles in communication, differences in processing information that impact interpretation of social situations, executive functioning, and sensory sensitivities. Understanding the contributing factors increases awareness leading to greater acceptance.
What are the Unique Strengths and Challenges?
Once families understand ASD on a broad level, the next step is a discussion around their own family member with ASD and the unique attributes of their loved one. Clinicians can support families through evidence-based consultation services, such as the Collaborative Model for Promoting Competence and Success or COMPASS (Ruble et al., 2010). While other models of care exist, COMPASS explicitly identifies how to enhance competence for families and goes beyond the common antecedent/consequence behavioral strategies. This model highlights the importance of ecological interventions that include parents and siblings who have the most frequent interactions with the individual with autism. This includes considering all environmental contexts and the opportunities for naturalistic teaching, generalization, and skill maintenance.
Identify Tools, Supports and Resources
Information derived from the COMPASS profile can be used to accurately identify what supports parents can implement in the home environment to set the stage for success. For example, many individuals with autism have a difficult time with transitions and do well with routine and structure. A simple visual schedule can be a huge support and will reduce worry over “what comes next” and helps to smooth transitions. For individuals who may need support navigating complex social situations and expectations, social narratives are ideal. Similarly, organizational support is invaluable for some individuals to help them stay on task. Supports such as checklists, color coded folder systems, visual prompts, and/or electronic reminders can come in handy. Other supports such as behavior charts/reward systems are a great way to positively reinforce desired behaviors. In addition to being beneficial for a child with ASD, many of these supports may also help their siblings, allowing for a shared experience.
A Team Approach
Often, several specialists may be involved in treatment and intervention. Most interventions provided by speech language pathologists, psychologists, behavioral therapists, and occupational therapists require strategies used in their sessions to be generalized to the home environment. Parents and siblings are ideal carry over agents when generalizing these skills. Having a team approach, one that involves interdisciplinary meetings and keeping communication lines open, supports families tremendously by preventing redundancy across practices and reducing the burden on families of sharing updates across multiple providers. The team can also support in identifying resources in the community, such as recreational interests for individuals with autism, or locating mental health resources for parents and siblings.
Having Parents and Siblings as Intervention Agents
Research shows that knowledge and participation in interventions can improve feelings of competence and self-efficacy for both parents and siblings (Kuravackel, et al. 2018; Ferraioli et al. 2012). Parent and sibling relationships are often the longest lasting that people will have, and having the family practice strategies with their loved one allows for development of skills that can be generalized to the community. Parents who are trained and become more skilled in intervening with their child report less stress than parents of individuals with autism who do not have these opportunities (Kuravackel, et al. 2018). Siblings of individuals with intellectual and developmental disabilities, including ASD, are often expected to help more at home (Hannah and Midlarsky 2005) which can lead to distress on the part of the sibling (Barak-Levey et al. 2010). It is therefore important to balance the needs of the siblings when they are used as intervention agents.
Parent-Mediated Strategies
In parent-mediated interventions such as COMPASS for Hope (C-HOPE; Kuravackel et al. 2018), parents first complete the COMPASS profile to understand the underlying communicative intent of behaviors and then are trained in skills to decrease target behaviors. In addition to using the visual supports mentioned above, parents learn to identify antecedents and consequences of behaviors that may be maintaining them. They learn to use language that is succinct, specific, and conveys the intent with clarity. For example, “Put on pajamas” rather than “Get ready for bed now”. Emphasis is placed on getting the attention of the individual, use of tone and reducing ambiguity. Parents are encouraged to problem solve and come up with replacement behaviors that are more desirable and lead to positive outcomes for self and others. The COMPASS profile helps parents set reasonable goals and brainstorm providers around addressing barriers. A reward system commensurate with age and interest is discussed and used to reinforce and increase desirable behaviors.
Sibling-Mediated Strategies
Providers can encourage siblings to attend therapy sessions and incorporate them as needed to teach pivotal skills. Research consistently shows the robust benefits of peer-mediated intervention (Chan et al., 2009), and literature also supports the extension of these results when family and sibling-mediated interventions interact through direct teaching, play, modeling and role play with their siblings with autism. Centering interventions around the individual’s interests can be used to improve joint attention, social initiations, imitation, and engagement among other pivotal social skills (Ferraioli & Harris, 2011; Pacia et al., 2022; Walton & Ingersoll, 2012). Siblings can be used to teach simple reciprocal behaviors such as turn taking, participating in shared enjoyment and model problem solving behaviors when things do not go as planned. Interventions can be grounded in behavioral strategies of pivotal response treatment, functional communication training, and principles of applied behavior analysis such as prompting, cooperative play, while providing motivation through reinforcement of targeted behaviors. When brothers and/or sisters are trained effectively, they gain the knowledge needed to implement the interventions and can also “enable their brothers or sisters who have autism to develop skills in diverse areas which include play skills and functional skills while decreasing unwanted behaviors” (Bene & Lapina, 2021, p. 193).
Severity of challenging behaviors associated with autism symptoms can pose a particular risk to sibling connection (Kuravackel, et al. 2020). However, there is also the potential for neurotypical siblings to have an extremely rewarding childhood, fostering empathy, patience, kindness, resilience, and problem solving while celebrating differences and individual strengths (Bohn, 2025).
Importance of Self-Care
Parents and siblings should keep in mind the importance of caring for themselves, particularly when the child with autism has a high level of demands, such as frequent tantrums, busy therapy schedules, or limited independence with daily living skills. It is important to prioritize their own well-being in the form of self-care and intentional use of coping strategies. Coping strategies such as mindfulness, leaning on social networks, and employment of solution-focused coping have all been found to be effective in helping parents of autistic children manage their own stress (Yesilkaya & Magallón-Neri, 2024).
Conclusion
In summary, a comprehensive intervention model that fosters understanding and acceptance, while enhancing the family’s ability to apply generalizable strategies at home, promotes positive behaviors, strengthens family competence, and helps reduce overall stress (Fante et al., 2025).
References
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Grace M. Kuravackel, PhD, ABPP
Board Certified in Counseling Psychology
Correspondence: Grace.kuravackel@louisville.edu
Cody M. Davis, PhD
Correspondence: matthew.davis.8@louisville.edu
Katelyn James, PsyD
Correspondence: katelyn.james@louisville.edu