Why the National Autism Association Is Returning to Its Roots | NAA Executive Director, Krystal Higgins
From Inchstones with Sarah | Autism Advocacy & Caregiver Stories · 00:28:25
Show by Sarah Kernion | Profound Autism Mom and Caregiver Advocate
What does meaningful autism advocacy look like when families need both immediate safety resources and answers to difficult medical questions? In this episode of the INCHSTONES Podcast, Sarah Kernion welcomes Krystal Higgins of the National Autism Association (NAA)** to discuss the organization's evolving approach to profound autism, parent advocacy, wandering and elopement prevention, and emerging conversations about leucovorin. Krystal shares how NAA's parent-led history shaped its safety initiatives and why a recent educational webinar on leucovorin prompted renewed conversations about the information autism families want. Together, Sarah and Krystal explore: - The National Autism Association's history and mission- Wandering and elopement safety for autistic children- Parent demand for information about leucovorin- The importance of discussing complex autism experiences without dismissing families- Why different perspectives within the autism community can coexist Families deserve safety, meaningful information, and a voice in the conversations shaping their children's futures. Discover more at www.inchstonespodcast.com. Chapters (00:00:01) - Introduction to Crystal Higgins and NAA(00:01:47) - Crystal's personal story: daughter's birth injury and healing journey(00:04:09) - Canaries in the coal mine: autism as a biological, medical issue(00:04:46) - History and evolution of the National Autism Association(00:06:52) - Lucavorin webinar and committing to unapologetic truth-telling(00:08:33) - Mothers as truth-tellers and the power of community(00:10:54) - Advocacy for families with highest support needs; elopement realities(00:12:30) - Autism subsets and the cancer analogy(00:14:14) - The divide between high and low support needs narratives(00:15:42) - Media, algorithms, and the hidden realities of profound autism(00:18:30) - Wandering-related drowning deaths and media silence(00:20:34) - Autism as a political and public health crisis(00:22:54) - Adulthood, caregiving longevity, and systemic preparedness(00:24:57) - Hope through federal action plans and urgency(00:26:41) - Closing thoughts and gratitude
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