Understanding the Needs of Siblings of Autistic Individuals and the Role of Online Community Support

People with autistic siblings often serve as informal caregivers from an early age, and might anticipate taking on a primary guardian role in the future. What are the unique needs of siblings, and what can be done to better support them? Could an online community help? This work aims to understand the experiences of people with autistic siblings through 12 semi-structured interviews with adults, and suggests designs for an online community tailored to them. We find that siblings’ lives have three primary phases: living at home with their autistic sibling, living independently, and potentially taking on a role as primary caretaker for their sibling. We focus on adults in the middle stage, who reflect on past and current support needs. A key challenge for community support environments is understanding how to allow an appropriate amount of venting, but prevent members from feeling overwhelmed by negativity. We present design recommendations for a lifelong online community that supports neurotypical siblings in balancing their personal identity with their evolving role as a caregiver, through life-stage sensitive and emotionally supportive interactions. Understanding the need for life-stage sensitive support in this demographic may provide insights into the need for life-stage-differentiated design for other groups.