302: Beyond Milestones, A New Look at Profound Autism with Sarah Kernion

This podcast episode features Sarah Kernion, a writer, podcast host of "The Inchstones Podcast," and mother of two profoundly autistic, nonspeaking children. Kernion advocates for a new conversation around profound autism, focusing on neurobiological barriers and redefining advocacy to prioritize presence, effort, and dignity over milestone achievements. She emphasizes the urgent need for distinct, research-grounded discussions on profound autism, particularly regarding the disproportionate caregiving burden on mothers and its impact on their careers.

Key Takeaways:

• Redefining Profound Autism Advocacy: Sarah Kernion champions a shift in the conversation surrounding profound autism. She highlights the need to focus on neurobiological barriers like apraxia, dyspraxia, and sensory processing disorder, advocating for research urgency, scientific rigor, and a civil rights reframing to include profoundly autistic individuals often overlooked in mainstream neurodiversity discussions. Her work redefines advocacy around presence, effort, and dignity rather than traditional milestone achievements.
• The Power of Maternal Intuition and Shared Stories: Kernion stresses the importance of a mother's primal intuition as a crucial "data point" in understanding and advocating for their children with profound autism. She encourages mothers to trust this inner knowing and use it to inform care and support. The conversation also underscores the power of one-on-one connections and shared stories among caregivers and within professional settings to foster understanding, reduce isolation, and build psychological safety.
• Addressing the Caregiving Burden and Workplace Impact: The podcast sheds light on the immense and often unsustainable caregiving demands placed on mothers of profoundly autistic children. This burden frequently leads to career plateaus or plummeting for women, highlighting a systemic problem where workplaces are not adequately set up to support these caregivers. Kernion suggests that leaders sharing their own experiences with caregiving can foster a more inclusive and understanding environment, ultimately benefiting both employees and companies.

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