About this episode

The episode discusses the challenges faced by families caring for children with severe autism and the inadequacies of current support systems.

Autism parenting at the severe and profound end of the spectrum often reveals a reality that systems are not built to support. In this conversation, Autism Mom Sarah Kernion speaks with Jackie Kancir, Executive Director of the National Council on Severe Autism (NCSA), about the growing gap between what families need and what existing structures provide. Drawing from both personal experience and national advocacy work, Jackie outlines how caregiving for children with severe and nonspeaking autism places sustained pressure on families—emotionally, financially, and physically. The conversation explores how current systems frequently respond only in moments of crisis rather than building proactive, comprehensive support. Central to the discussion is the concept of crisis planning: not as a last resort, but as a necessary framework for families navigating autism parenting at high levels of need. They also examine the mental health risks faced by caregivers and the importance of building support systems that extend beyond the individual to include the entire family unit. This conversation calls for a shift in autism advocacy—one that centers the realities of severe autism, listens to…

People in this episode

Host: Sarah Kernion

Guest: Jackie Kancir

Topics covered

• severe autism
• caregiving
• systemic support
• mental health
• autism advocacy
• family support

Mentioned in this episode

Organizations: National Council on Severe Autism, Cure SynGAP1

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