In this episode, Mike Carr addresses growing concerns about potential Medicaid cuts and shares practical funding alternatives for families caring for individuals with profound autism or multiple disabilities. He emphasizes the importance of staying hopeful and proactive, offering guidance through his personal experience and upcoming book. Key alternatives discussed include Social Security benefits (SSI and SSDI), Medicaid waivers like CLASS and HCS (each with different funding caps and waitlists), and ABLE accounts, which allow families to save without affecting benefits. Mike encourages families to plan early, apply for multiple waivers, and reach out directly for support navigating these complex systems.

In this episode of Autism Labs, Mike Carr shares his struggles with gaining and keeping instructional control—getting his profoundly autistic son to follow directions without resistance. He contrasts his challenges with others' success and stresses that instructional control is about trust, not compliance. Carr discusses using consistency, patience, and positive pairing to become a reinforcing presence, the strategic use of reinforcers, and the need for caregiver consistency. He also outlines seven steps to build instructional control through reinforcement, engagement, and routine.

Mike Carr shares five key tips for families seeking residential housing for profoundly autistic adults, based on his 35-year journey with his son. He urges parents to prioritize programs with purpose-driven missions, real community engagement, and clear visions for lifelong growth. Mike highlights his nonprofit, J13, as a fast-growing model focused on joy, connection, and meaningful living.

Mike Carr highlights new CDC data showing autism rates rising from 1 in 36 eight-year-olds in 2020 to 1 in 31 by 2022. Reflecting on raising his profoundly autistic son diagnosed in 1990—when rates were about 1 in 10,000—Carr argues the increase isn't just better diagnosis but a real, troubling trend. He suggests RFK Jr.'s claim that autism is a more urgent crisis than COVID deserves attention, given the heavy financial and caregiving burdens. Carr stresses the need for clearer communication about autism’s complexity and describes how his initiatives, Autism Labs and J13, aim to use technology and expertise to deliver better, more affordable care.

Mike Carr, a father of a 35-year-old son with severe autism, shares his personal experience managing Pica behavior—when individuals eat non-food items. His son has ingested everything from rocks and leaves to toothpaste and deodorant, once even biting into a chlorine tablet from a pool skimmer, which led to a serious health scare. Mike offers practical solutions they've discovered over the years, such as using polyester or knit shirts and cloth napkins to deter chewing, locking up tempting non-edibles like deodorant and toothpaste, and ignoring attention-seeking behaviors when safe. He also mentions possible nutritional causes like iron or zinc deficiencies and recommends a helpful resource, “Pica: A Guide for Professionals,” for additional support.

Creating a safe, structured home for a profoundly autistic child means thinking ahead to prevent risks. When my son Michael ingested a chlorine tablet due to pica, it reinforced the need for smart locks, alarms, and cabinet locks to secure hazards and prevent wandering. Managing water intake is also crucial, so we use thumb valves and toilet restrictions. Simple, cost-effective solutions—like a binder clip on a shower door—help balance safety with practicality. Organization fosters independence, with labeled cabinets making daily routines easier. Ultimately, it’s about creating a space that’s both safe and empowering for our child to thrive.

In this episode, parent Mike Carr highlights the power of empathy, creativity, and community in raising a profoundly autistic child. By meeting their adult son Michael’s needs with compassion, fostering teamwork with humor and purpose, and collaborating with schools and insurers, challenges become opportunities. With positivity and collaboration, both the child and caregivers can thrive together. 

When Mike and Kay Carr’s son Michael, who has severe autism, aged out of school services, they faced limited options and heartbreaking rejections from programs unable to handle his needs. Frustrated but determined, they partnered with Dr. Nina Zuna at UT to create a unique program involving multiple departments. Students earned credit while providing therapy and support for Michael, fostering his growth and gaining invaluable experience. Though funding challenges forced them to scale back, the Carrs continue to collaborate with students, improving Michael’s care and sharing their journey to inspire and help other families facing similar struggles.

Mike Carr, a parent of a severely autistic adult, envisions AI "Doers" as transformative personal assistants. These advanced tools would seamlessly handle daily tasks, monitor health through wearables, and, for autistic individuals, analyze data to identify stressors, track positive experiences, and offer tailored insights. This innovation holds the potential to improve caregiving, enhance quality of life, and provide invaluable support to families like his.

This is the heartfelt story of a father navigating the challenges of raising a severely autistic son. One particularly overwhelming day—filled with work stress, a difficult morning, and no time for himself—he went for a run to clear his head and was struck by a car. Thankfully, he survived with minor injuries, but the experience left him reflecting on his life.
He shared how raising his son brings constant challenges: financial strain, sleepless nights, and missed plans. Yet, it’s the little moments—his son’s spontaneous hugs and pure affection—that make every sacrifice worthwhile. He encourages other parents to focus on these unique joys, as they can bring light even on the hardest days.