What "Extreme Caregiving" for Profound Autism Really Means

Brittney Crabtree is a co-host of Moms Talk Autism and a mom of four whose family spans the full autism spectrum. Her 19-year-old son is profoundly autistic and nonspeaking, and her youngest daughter is autistic with very different needs. That dual vantage point shapes a conversation most autism content avoids: what life actually requires when a person needs constant care, and how often the systems built to help fall short. Brittney, Julianna, and Kelley talk through the daily reality of safety planning, sensory and frustration-driven aggression, and the difference between parenting a child and caregiving for a disabled adult. They get into the hard parts too, including long-term residential care, the grief of planning for a future you won't be present for, and how siblings step into caregiving roles. Brittney shares what's worked, from California's Self-Determination Program to leaning on other moms a few steps ahead of her. The group also digs into a tension running through the whole episode: whether the mainstream autism conversation is quietly leaving profoundly affected, nonspeaking individuals and their families behind, and what real support would look like if it weren't. 🔗 Learn More: Website: refrigeratormoms.com Instagram:   / refrigeratormoms   LinkedIn:   / refrigeratormoms   Facebook:   / refrigeratormoms   TikTok:   / refrigeratormoms   Organizations mentioned in this episode: rubycakescookies.com momstalkautism.com wearebravetogether.org Refrigerator Moms is sponsored by Brain Performance Technologies, a specialty mental health clinic that offers neuromodulation treatments including SAINT (Stanford Accelerated Intelligent Neuromodulation Therapy) for treatment-resistant depression and major depressive disorder, as well as MeRT (Magnetic e-resonance therapy) for autistic people aged three or older. Learn more at https://brainperformancetechnologies.com 00:00 Meet Brittney Crabtree of Moms Talk Autism 01:14 Four kids, four different paths 02:19 What "extreme caregiving" really means 04:08 The big three: aggression and safety 04:52 Fort Knox: locks, shiplap, and elopement 06:09 Frustration aggression vs. sensory aggression 08:11 Sponsor: Brain Performance Technologies 08:33 The book "Upward Bound" and facilitated communication 10:50 A system that's woefully inadequate 11:33 No safe place in the community 12:42 When community programs won't accommodate 13:24 Aging out of the school system 14:01 The grief of long-term residential care 15:00 The hide-and-seek of finding services 16:01 The question: what happens when I'm gone 18:39 Resources and the regional center 18:51 California's Self-Determination Program 20:13 Finding caregivers he clicks with 20:15 No way to test the waters on housing 22:02 When siblings become caregivers 28:16 Sponsor: Brain Performance Technologies 28:42 Is profound autism being left behind? 30:09 A separate diagnosis for profound autism 31:14 Needs versus rights 34:24 Speed round 40:31 We Are Brave Together and the Tahoe retreat 43:52 Closing