{"type":"rich","version":"1.0","provider_name":"Transistor","provider_url":"https://transistor.fm","author_name":"Refrigerator Moms","title":"A Mother's Wish List for Her Severely Autistic Son","html":"<iframe width=\"100%\" height=\"180\" frameborder=\"no\" scrolling=\"no\" seamless src=\"https://share.transistor.fm/e/c839c52d\"></iframe>","width":"100%","height":180,"duration":2159,"description":"Nearly one in three autistic people are profoundly autistic: they need round-the-clock care, often cannot speak for themselves, and are rarely part of the public conversation about autism. Julianna Scott and Kelley Jensen built a short paper and a wish list for this community, and this episode walks through both. They trace how the 2013 DSM-5 change folded everyone under one autism umbrella, why that left the most severely affected fighting for the same scarce services, and where the real gaps sit: staffing paid at poverty wages, research that screens out anyone with an IQ under 70, adult services that barely exist, and policy that treats safe, shared housing as \"institutional.\" Along the way they get personal about caregiving versus parenting, the loneliness of independent living done without community, and one creative win: an ABA therapist who taught a 26-year-old to love movies over Zoom, one scene at a time.\nKey takeaways:\nRoughly 27% of autistic people are level three, or profoundly autistic, yet the term only entered the literature in 2021.\nThe DSM-5 change in 2013 widened the umbrella and stopped tracking the most severe cases separately.\nLess than 15% of autism research funding is estimated to reach profound autism.\nTherapists are scarce because the work is hard, the pay is low, and the required licensure is expensive to earn.\nMany clinical trials require an IQ of 70 or higher, excluding much of this population.\nRules meant to prevent \"congregate\" or \"institutional\" settings can block the shared, safe housing many families actually want.\nA separate diagnosis for profound autism could route higher-need people to services first.\nIHSS pays family caregivers, often at minimum wage, because there is frequently no one else and no day program available.\nThe hosts' wish list spans housing, communication, schools, caregiving, medical care, reproductive health, and social life.\n\n🔗 Learn More:\nWebsite: refrigeratormoms.com\nInstagram:...","thumbnail_url":"https://img.transistorcdn.com/HulBGQUSL2z8d_6F6RH17faDl04BfOUOawVExctAmvs/rs:fill:0:0:1/w:400/h:400/q:60/mb:500000/aHR0cHM6Ly9pbWct/dXBsb2FkLXByb2R1/Y3Rpb24udHJhbnNp/c3Rvci5mbS83OWUz/Yjk2Nzk5MWE4NTRh/Y2FkMDcxZGU0MmU4/NDkwNS5qcGVn.webp","thumbnail_width":300,"thumbnail_height":300}