Autism Labs

What happens when a profoundly autistic young adult reaches the end of school-based services?

For Mike Carr and his family, that question became a reality as their son, Michael, approached age 22. Finding appropriate adult services proved more difficult than expected, especially when programs struggled to accommodate complex support needs.

In this episode of Autism Labs, Mike shares the family's journey from searching for an adult program to creating a home-based support model of their own.

Their experience eventually led to a unique collaboration with University of Texas professors and students from special education, speech, nursing, and kinesiology. The students gained hands-on experience while Michael received individualized support, and the team used data to track progress, identify challenges, and adjust their approach.

Mike also discusses the ongoing challenges of caregiver staffing, what happened when funding became unsustainable, and why collecting meaningful data became one of the most valuable lessons from the experience.

This episode offers a real-world look at profound autism, the transition from school to adulthood, adult autism services, caregiver staffing, communication support, behavior, interdisciplinary care, and the challenges families face when traditional programs aren't designed for complex needs.

In this episode:

• Aging out of school services
• Finding adult services for profound autism
• Building a home-based support program
• The caregiver staffing challenge
• Working with university students and professionals
• Using data to measure progress and identify problems
• Training caregivers for complex situations
• Interdisciplinary autism support
• Funding challenges in long-term care
• Lessons learned from supporting an autistic adult

🎙️ About Autism Labs

Autism Labs provides practical conversations and real-world guidance for parents and caregivers supporting autistic children and adults, with a particular focus on profound autism, communication, behavior, caregiving, independence, transition, and adult services.

Website: https://www.autismlabs.com/

Newsletter: https://www.autismlabs.com/add-a-post/blog/

Could AI Help Us Understand Non-Speaking Autism?

What if artificial intelligence could help parents and caregivers better understand what a profoundly autistic, non-speaking person experiences throughout the day?

In this episode of Autism Labs, Mike Carr explores how emerging AI technology could potentially help families identify patterns in stress, communication, behavior, engagement, and joy.

Mike introduces the concept of an AI "Doer," an assistant designed not simply to answer questions but to take action and help manage everyday life. He then explores how this concept could apply to autism caregiving.

By combining wearable technology, physiological data, audio, video, schedules, and daily activities, future AI systems could potentially create a more detailed picture of what is happening in an autistic person's life.

The technology could help identify:

• Activities associated with happiness and engagement
• Situations that create stress or frustration
• Changes in behavior or communication
• Patterns that may be difficult for caregivers to observe consistently
• Strategies and activities that appear to work well
• Changes that could prompt caregivers to check in

Mike discusses his family's experience with his non-speaking son and explains why better information could be particularly valuable when a person cannot easily tell others what they are feeling or experiencing.

The episode also looks at the future of AI-assisted caregiving, autonomous transportation, wearable technology, and the potential for a continuous feedback loop that observes, assesses, suggests, and reassesses.

Importantly, Mike acknowledges that the fully integrated system he describes is not yet in place. Many of the individual technologies exist today, while the systems needed to bring them together are still developing.

Autism Labs hopes to explore these technologies further and eventually test practical applications in day programs, respite, residential support, and other real-world settings.

If you're a parent, caregiver, family member, or professional supporting someone with profound autism, this conversation offers a thought-provoking look at what technology might make possible in the future.

Listen to the full episode and share your thoughts with Mike at [email protected] 

Stress is a reality for many parents and caregivers supporting someone with profound or severe autism, especially when that support continues into adulthood.

In this personal Autism Labs episode, Mike Carr reflects on a frightening bicycle accident that gave him an unexpected opportunity to step back and reconsider the stress he carries as the father of his profoundly autistic adult son, Michael.

Mike speaks openly about the realities of lifelong autism caregiving, including disrupted family plans, financial pressures, daily care needs, and the challenges of supporting a non-speaking autistic adult.

But he also focuses on something equally important: connection.

Michael may not communicate through spoken words, but he communicates through hugs, smiles, laughter, taking his father's hand, and leading him toward activities he wants to do.

For Mike, these moments are powerful reminders that caregiving isn't defined only by its hardest days.

In this episode, Mike explores:

• Stress and emotional pressure in autism caregiving
• The realities of parenting a profoundly autistic adult
• Supporting a non-speaking autistic family member
• The demands of lifelong caregiving
• How everyday actions can communicate love and needs
• Finding perspective during overwhelming moments
• Recognizing meaningful moments of connection

If you're a parent, caregiver, family member, or professional supporting someone with profound autism, this conversation offers an honest look at the challenges and meaningful connections that can exist side by side.

Learn more about Autism Labs: https://www.autismlabs.com/

AI is changing the world, but can it truly support families navigating severe and profound autism?

In this episode, Mike Carr, father of a profoundly autistic adult son, tests four leading AI tools: ChatGPT, Claude, Perplexity, and Gemini. His mission is simple but critical: determine whether AI can help parents find real-world solutions for caregiving, adult transition planning, and high-support needs.

What he discovers is both promising and concerning.

While AI tools can quickly generate research, surface programs, and suggest resources, they consistently fall short in one key area: understanding the unique challenges of Level 3 autism. For families supporting individuals who are nonverbal, require one-on-one care, or depend on lifelong support, generic answers aren’t enough.

In this episode, you’ll learn:
• Which AI tools provide the most useful results
• Where AI fails families with severe autism
• How to use AI as a research assistant, not a decision-maker
• Why validating information is critical for caregivers
• What this means for the future of autism support

If you’re a parent, caregiver, or professional working with profoundly autistic individuals, this episode offers practical insight into how AI fits and doesn’t fit into your world.

🎧 Listen now and discover what actually helps.

In this powerful season premiere of Autism Labs, Mike Carr explores what it really means to “play the game” of profound autism caregiving and why most families are looking at it the wrong way.

Using a mix of real-life experience and storytelling, Mike reflects on 35 years of raising a profoundly autistic son and reveals a truth many families eventually discover: caregiving is not evenly distributed, and the most important role is often invisible.

From managing therapy schedules and behavioral challenges to coordinating staff, medical decisions, and communication systems, one person often becomes the operational center of the entire care ecosystem.

Mike also introduces a mindset shift inspired by sports and strategy:
 Instead of trying to “win” autism, families must learn how to play the game better, by recognizing roles, reducing chaos, and valuing unseen contributions.

This episode is essential listening for parents, caregivers, educators, and professionals supporting individuals with profound autism or high-support needs.

🔑 Key Topics Covered:

• The “game” of profound autism caregiving
• Invisible labor in autism families
• Why roles in caregiving are often misunderstood
• The reality of long-term autism support systems
• Leadership inside the home and caregiving structure
• Mindset shifts for sustainable caregiving

💬 Join the Conversation:

Autism Labs is dedicated to real, honest conversations about profound autism, caregiving, and family life.

👉 What part of caregiving feels most invisible in your life?

In this episode of Autism Labs, Mike Carr explores one of the most critical and often overlooked topics in autism care: layered safety systems for individuals with profound autism.

Through a real-world scenario involving a school environment, Mike illustrates how quickly a child can transition from a safe setting to a life-threatening situation not due to a single mistake, but due to multiple small breakdowns happening at once.

A miscommunication between staff.
 A temporary disruption in routine.
 An unlocked or unmonitored exit.
 A moment of assumed supervision.

Together, these create a perfect storm.

Mike explains why children with autism who have limited danger awareness require more than trust-based supervision; they require redundant, layered systems of protection both at home and in school settings.

He also breaks down practical safety strategies, including:

• Smart locks and physical barriers
• Door sensors and alarm systems
• Mobile alerts for caregivers
• Visual and auditory monitoring systems
• Clear staff role assignment during transitions
• Safety awareness during emergencies like fire drills or maintenance issues

This episode is essential listening for:

• Parents of autistic children and adults
• Caregivers managing elopement risk
• Educators and ABA professionals
• School administrators and support staff

If you support someone with high or profound autism, this conversation will challenge how you think about safety and how systems can fail even when everyone has good intentions.

🎧 Subscribe to Autism Labs for real-world autism caregiving insights, safety strategies and lived experience perspectives.

Parent and Founder of John 13 Community Mike Carr chats with parent and BCBA certified Mark Garcia about their search for a program for their children, and what makes John 13 Community Program different than the other programs they’ve seen, including the staff, structure, and social benefits of the program.