Sibling Perspectives and Family Support in Autism Care
When raising a child with autism, one of the most profound and underrepresented narratives is that of siblings.
Siblings play a unique and lifelong role in supporting their brothers or sisters while navigating their own lives. This week on the Autism Weekly podcast, we were joined by Amy Kelly, National Director of Family Engagement at Devereux Advanced Behavioral Health, and her son Danny Kelly, who offered a heartfelt look at their family’s experience supporting daughter and sister, Annie, who has profound autism.
Through this engaging conversation, they shared powerful stories about family dynamics, the role of siblings in caregiving, and critical resources available to families affected by autism. Whether you’re a parent, sibling, or someone trying to better understand autism support, this episode offers guidance, validation, and hope.
The Transformative Role of Siblings in Autism Support
Danny, Co-Chair of Devereux’s Sibling Engagement Committee, provided a deeply personal view of his life growing up with Annie. From a young age, Danny's “normal” was shaped by having therapists in the house and a sibling who required constant care. This upbringing, while unique, gave him meaningful life lessons in resilience, empathy, and advocacy.
Danny’s insightful reflection highlights an important truth for families raising autistic children: siblings often share the emotional challenges and responsibilities of caregiving. As he articulated, siblings like himself will likely have the longest relationship with the autistic family member, surpassing even parents in terms of shared lifespan—which comes with its own set of complexities and joys.
For families, this is a profound reminder to include siblings in autism care plans. Whether it’s inviting them to participate in therapies, openly discussing adjustments to family activities, or creating space for their emotions, these steps can foster a sense of inclusion and purpose.
Supporting Balance in Family Life
One of the key takeaways from the episode was Amy and Danny's discussion about balancing attention and care across family members. While Annie required significant resources and constant engagement, Amy was intentional about creating moments for her sons to feel valued and supported.
From playdates structured around Annie’s needs to individualized “date nights” with her boys, Amy embodies the importance of recognizing and celebrating each child’s role in the family.
Danny noted that this inclusive approach shaped his view of caregiving not as a burden, but as a privilege. His experiences helped him form a unique bond with Annie, which translated into helping her thrive in social situations, like attending proms together, and creating lifelong memories.
For parents, the Kelly’s approach is an inspiring example of how intentionality and preparation can empower siblings. By engaging siblings early on in therapy activities or family-centered care, parents lay the foundation for a more unified family dynamic.
Resources and Tools for Families with Autism
Understanding how to access and leverage resources is critical for families navigating autism. During the conversation, Amy emphasized several critical tools and recommendations.
- Navigating Waiver Programs and Funding
Amy shared the importance of getting on waiver waiting lists early and using available services whenever possible. These programs, she explained, provide funding and resources that can help families ensure long-term care for their loved ones. Yet, minimizing services during childhood may lead counties to underestimate the level of future support needs.
- Sibling Support Programs
Danny’s role in the Sibling Engagement Committee highlighted a growing focus on sibling involvement in autism care. This committee’s mission is to create resources and foster dialogue for siblings who step into caregiving roles as they get older. Additionally, Sibshops provide younger children (age 5–12) with spaces to connect, share, and feel seen.
These programs are powerful reminders that siblings need emotional and educational support, too. Tools like the committee’s sibling toolkit and activities for shared engagement serve as invaluable starting points for fostering those connections.
- Advocacy for Profound Autism
Care for individuals with profound autism requires tailored strategies, including more specialized research and community awareness. According to Amy, families must become the chief advocates for their children. This advocacy includes participating in IEP meetings, finding collaborative caregivers, and stepping into leadership roles when necessary.
She underscores that families are the true experts on their children. Creating partnerships with therapists, teachers, and service providers ensures your insights will shape programming and support systems.
The Power of Connection and Community
The Kelly’s story reinforces the importance of parents and siblings finding a supportive network. Whether through family engagement programs, sibling committees, or connecting with other parents on similar journeys, community can ease the emotional toll of caregiving.
Danny reflected on how volunteering with Annie and meeting others through sibling networks gave him a sense of pride and purpose. He recalled helping organize activities, attending events, and advocating for families just like his own. His advice to siblings is simple yet powerful: “You’re not alone.”
Parents, too, can benefit from these resources by realizing they don’t bear this responsibility in isolation. Programs like Devereux’s National Family Advisory Board and sibling engagement projects can provide practical tools while creating opportunities to share experiences with others who “get it.”
Takeaways for Every Family
- Include Siblings in Care Plans
Sit down with siblings and discuss their role in caregiving, even at a basic level. Create opportunities for them to actively engage, whether it’s through therapy sessions, playtime, or attending events. - Start Early with Resources
Sign up for local waiver programs and services to establish a track record of care for your child. The earlier you begin, the more likely you’ll have access to necessary long-term support. - Foster Independence
Empower your autistic child with tools to express themselves, practice decision-making, and explore meaningful activities. This builds their confidence and ensures smoother transitions into adulthood. - Build a Village
Lean into sibling support networks, community events, and advocacy groups. Having others who understand your experience can offer emotional support and practical solutions. - Celebrate Every Win
Small moments, like successful outings or therapeutic milestones, deserve recognition. These victories strengthen family bonds and remind everyone of the collective progress made.
Final Thoughts
Raising a child with autism requires collaboration, resilience, and a heart full of hope. Through their candid stories, Amy and Danny Kelly remind us of the profound beauty in shared family journeys. Their example offers a road map for balancing challenges, celebrating individuality, and creating lasting connections.
Whether you’re a parent charting a course for your child’s future or a sibling taking on the role of advocate and friend, know this: you are not alone. There are rich resources, supportive communities, and endless opportunities to make a difference—not only in your loved one’s life, but in the broader autism community.
To learn more and explore the sibling toolkit, head over to Devereux’s website or reach out to Amy Kelly (amy.kelly@devereux.org) for questions and connections.
