Autism Labs

What happens when a profoundly autistic young adult reaches the end of high school?

For Joel Wood and his wife Martha, that question has become increasingly urgent as their 20-year-old son William approaches adulthood.

William has autism and apraxia and is largely non-speaking. After years of limited communication, his family's work with spelling revealed abilities and thoughts that challenged some of their previous assumptions about what he could understand and accomplish.

In this episode of Autism Labs, Joel shares more than 17 years of experience navigating autism, communication, behavior, education, and the transition into adulthood.

Mike Carr and Joel discuss why traditional adult and residential programs may not be the right fit for every person with significant support needs. They explore the importance of assuming competence, creating meaningful work, building community, reducing isolation, and supporting graduated independence.

The conversation also addresses the practical challenges families face when planning adult services, including elopement, caregiver turnover, staffing ratios, Medicaid and waiver funding, private residential care, day programs, and the financial sustainability of specialized programs.

In This Episode

• Joel's family's autism journey with William
• Autism and apraxia
• Non-speaking autism and communication
• Discovering abilities through spelling
• Behavior and elopement challenges
• Planning for adulthood after high school
• Residential care and day-program options
• Meaningful employment and vocational activities
• Community, friendship, and reducing isolation
• Graduated independence
• Caregiver recruitment and retention
• Funding and sustainability of adult autism programs

This episode is especially relevant for parents and caregivers of autistic teens and adults, particularly those with profound or severe autism and complex support needs, as well as professionals working in adult disability and autism services.

This is Part 1 of the conversation. Mike and Joel continue the discussion about residential care and planning for adulthood in Part 2.

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

What happens when an autistic child ages out of school but still needs significant support?

In Part 2 of this conversation, Mike Carr continues his discussion with Sharon Holloway and Allie Langan about respite care, adult autism services, community inclusion, and preparing autistic adults for greater independence.

The conversation explores how meaningful respite programs can support both autistic adults and the families who care for them.

Mike shares lessons from his experience with Michael and explains why his program focuses on getting autistic adults into the community rather than allowing them to become isolated. Sharon shares her experience as a parent and her son's involvement in Special Olympics, including how peer relationships helped support his communication and development.

The group also discusses the practical challenges involved in creating these opportunities, including transportation, staffing, funding, and program sustainability.

In this episode, we discuss:

• Respite care for autistic adults and their families
• The challenges families face after school services end
• Community inclusion and reducing isolation
• Transportation for adult autism programs
• Building life and social skills through real-world experiences
• Preparing autistic adults for residential living
• Peer relationships and communication development
• Meaningful employment and volunteer opportunities
• Finding activities that match an individual's interests and strengths
• Funding and creating sustainable adult autism programs

A central theme throughout the conversation is that adulthood doesn't necessarily mean the end of learning and development. With appropriate support and opportunities, autistic adults may continue building skills, relationships, confidence, and a greater sense of purpose.

For parents and caregivers, the conversation also highlights an important reality: supporting an autistic adult is a long-term journey, and families need support too.

Listen to the full episode and join the conversation.

What has helped your family navigate the transition into adulthood? What support is still missing in your community?

About Autism Labs

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

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

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

What happens when an autistic child ages out of school?

For families supporting autistic teens and adults, especially individuals with profound autism or significant support needs, the transition beyond school can create major challenges around life skills, respite care, adult services, behavior support, community participation, and independence.

In Part 1 of this Autism Labs conversation, Mike Carr is joined by Sharon, an autism parent and community advocate, and Allie, a Board Certified Behavior Analyst (BCBA) with approximately 10 years of experience working across autism and neurodivergent services.

The conversation explores what families can do to prepare for adulthood and why planning for life after school should begin earlier than many families realize.

Mike also shares lessons from his family's experience raising a severely autistic, non-speaking adult and operating a nonprofit day and respite program.

In this episode, we discuss:

• Why respite care is important for both autistic individuals and caregivers
• The role of life skills in preparing for adulthood
• Why consistency between school, home, and respite matters
• How individualized support can help prevent behavior escalation
• Understanding triggers and recognizing what motivates each individual
• Physical activity and community participation as opportunities to practice life skills
• Challenges surrounding adult day programs and Medicaid waivers
• Self-directed services and funding considerations
• Preparing for the transition from school to adult services
• Using universities and community organizations to build additional support
• How unexpected communities can become valuable sources of connection and support

A major theme throughout the discussion is that autism support cannot be approached with a one-size-fits-all model. Each person's communication style, strengths, preferences, triggers, behavior, and level of support needs must be understood.

The episode also highlights an issue that affects the entire family: caregivers need reliable respite and trusted people who can support their loved one safely.

This is Part 1 of the conversation. Part 2 continues the discussion with Sharon and Allie.

🎙️ About Autism Labs

Autism Labs provides practical conversations and resources for parents, caregivers, and professionals supporting autistic children and adults, including individuals with profound autism and complex support needs.

Website: Autism Labs

Newsletter: Autism Labs Newsletter

Most autism families don’t struggle with commitment. They struggle with coordination.

After decades of clinical experience, pediatric neurologist Dr. Dilip Karnik saw a consistent gap: parents are left to manage complex care systems without the tools or support they actually need.

In this episode of Autism Labs, host Mike Carr sits down with Dr. Karnik and his team to explore a new AI-powered platform designed to centralize autism care and support decision-making in real time.

This conversation covers how technology can move beyond theory and into practical, daily use for families navigating autism, especially those supporting teens and adults with higher needs.

Key topics include:

• Why parents feel lost after an autism diagnosis
• The challenge of fragmented medical and therapy systems
• A centralized app for managing records, providers and communication
• AI-powered search and virtual assistance for real-time answers
• Wearable technology to track behavior, anxiety and seizures
• Precision medicine and reducing trial-and-error treatments
• Expanding access to autism support globally at no cost

This episode is especially relevant for parents, caregivers, clinicians and professionals working in autism services who are looking for scalable, practical solutions.

If you’ve ever felt overwhelmed trying to manage everything, this conversation offers a glimpse into what more connected, responsive support could look like.

Visit: https://podhealth.ai/ 

Autism housing is one of the most complex and emotional decisions families face, especially when supporting individuals with high or profound support needs.

In this continuation episode, Mike Carr and Ann Hart (former President of the Autism Society of Texas) explore real-world housing options for autistic adults, including State Supported Living Centers (SSLCs), group homes, ICFs and waiver-based systems.

Rather than offering a one-size-fits-all solution, this conversation focuses on how parents can evaluate options based on safety, staffing quality, structure and long-term sustainability.

Ann Hart also challenges common assumptions about institutional settings, explaining how some campus-based environments may actually support greater independence when properly structured.

This episode is essential listening for families planning for autism adulthood, transition services or long-term care systems.

Key topics include SSLCs, residential placement, independence training, waiver systems and preparing for adulthood transitions.

Resources: http://drive.google.com/uc?export=download&id=1dqdXZPO5RJw55XEAZcgwlTmA1RP01K8x 

For families supporting an autistic child with significant support needs, planning for adulthood can bring difficult questions: Where will they live? What services will they need? How will those services be funded? And what happens when the school system ends?

In this episode of Autism Labs, Mike Carr speaks with Ann Hart, a longtime autism advocate, past president of the Autism Society of Texas and mother of a 40-year-old son with severe autism.

Ann brings decades of experience volunteering with the Autism Society and navigating adult disability services, including Medicaid waivers. Together, Mike and Ann discuss housing and support options for autistic adults who need moderate to high levels of daily support.

They explain why families may want to begin researching Medicaid waivers early, particularly when states have long waiting lists. The conversation also explores HCS, SSI, Medicaid, group homes, host homes, private-pay residential communities and other possible sources of support.

A major theme throughout the episode is preparation. Ann discusses the importance of developing independence and daily living skills while also addressing challenging behaviors and communication needs. Mike explains how communication difficulties can sometimes contribute to anxiety and behaviors when an autistic person doesn't understand what's happening or can't communicate what they need.

The conversation also highlights an important reality: residential programs aren't necessarily one-size-fits-all. Families need to ask questions, understand their family member's support needs, and determine whether a particular program is an appropriate fit.

This episode is especially relevant for parents of autistic children and teens, parents of profoundly or severely autistic adults, caregivers and professionals working in autism and developmental disability services.

In This Episode

• Planning for adult housing and services
• Medicaid waivers and waiting lists
• HCS and SSI
• Group homes and host homes
• Private-pay residential options
• Communication and challenging behavior
• Building independence and daily living skills
• Transition planning before the end of school
• Evaluating residential programs
• Thinking broadly about possible housing options

This is Part 1 of a two-part conversation about housing and adult services for autistic people with higher support needs.

Resources: http://drive.google.com/uc?export=download&id=1dqdXZPO5RJw55XEAZcgwlTmA1RP01K8x 

What if AI could give families supporting someone with profound autism an extra set of eyes?

In this episode of Autism Labs, Mike Carr explores how emerging AI and smart-home technology could support parents, caregivers and families caring for autistic children and adults with complex support needs.

From AI-powered cameras and smart-home routines to personalized video modeling, Mike looks at practical ways technology may help with safety, behavior, communication, therapy, daily living skills and independence.

Mike shares his perspective as a parent of a profoundly autistic son and discusses how his family is exploring AI-generated video modeling to help Michael practice skills he hasn't yet mastered.

Topics include:

• AI-powered home monitoring and autism safety
• Smart-home technology for caregivers
• Using AI to find important moments in camera footage
• Understanding what happened before and after a challenging behavior
• Technology that could provide additional peace of mind when caregivers aren't home
• AI video modeling for speech and communication
• Occupational, physical, vocational and recreational applications
• Teaching life skills through personalized visual modeling
• Technology and independence for autistic adults
• The future of AI-assisted autism support

For parents and caregivers of people with profound autism, technology isn't a replacement for human support. But it may become another useful tool for creating safer environments, supporting learning, and opening new opportunities for independence.

🎙️ Listen to Autism Labs for practical conversations about profound autism, caregiving, communication, behavior, adult services, transition, technology and family life.

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

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

What should parents and caregivers believe when they hear a new claim about autism treatment?

After more than 35 years raising his son Michael, who has severe autism and complex support needs, Mike Carr shares what his family has learned about navigating autism research, treatment claims, caregiving and everyday support.

In this episode, Mike discusses commonly asked questions about vaccines and autism, acetaminophen/Tylenol during pregnancy, leucovorin, cerebral folate deficiency and folic acid. He also separates his family's personal experience from broader research and emphasizes the importance of discussing medical decisions with qualified healthcare professionals.

The conversation then moves to what families supporting someone with profound autism often need most in everyday life: communication, structure, predictable routines, health and safety support, sleep, behavioral strategies, respite and a coordinated care team.

Mike also talks about the emotional reality of long-term caregiving and why families shouldn't overlook small victories. For a parent or caregiver, a calmer afternoon, a moment of connection, or a new way for a non-speaking person to communicate can be incredibly meaningful.

This episode is ultimately about finding realistic hope while caring for someone with profound or severe autism and remembering that caregivers need support, rest and compassion too.

In this episode:
• Autism treatment claims and how to evaluate them
• Vaccines and autism research
• Tylenol/acetaminophen and pregnancy
• Leucovorin and cerebral folate deficiency
• Folic acid and personal family experience
• Communication and non-speaking autism
• Structure, routines, and visual schedules
• Health, sleep, seizures and safety
• Respite and caregiver support
• Coordinated care teams
• Finding hope through everyday progress

Note: This episode reflects Mike's personal experience and discussion of research. It is not medical advice. Medical decisions should be discussed with a qualified healthcare professional.

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

For families supporting someone with profound autism, unstructured time can sometimes lead to boredom, frustration, agitation, or challenging behavior. In this episode, Mike Carr shares how his family uses structure, visual schedules, communication tools, and meaningful choices to help his son Michael build independence and participate more actively in his daily life.

Mike explains why visual structure isn't simply about keeping someone busy. Everyday activities such as making the bed, doing laundry, walking, shooting hoops, or following a breakfast routine can become opportunities to practice communication, daily living skills, decision-making, and independence.

He also discusses the tools his family uses, including Picto-Selector, TouchChat, and apps such as First Then Visual Schedule HD, Visual Schedule Planner by Good Karma, ChoiceWorks and Lil Planner: Visual Schedule. Mike explains how these supports can help Michael understand what's happening next, make choices, and work more consistently with his support team.

The conversation also connects these everyday skills to a bigger goal: preparing autistic children and adults for respite care, residential care, and greater independence.

Mike's advice is straightforward: start small. Choose one routine, introduce a few meaningful choices, and build on the small successes.

In this episode, you'll learn about:

• Using visual schedules with profound autism
• Reducing uncertainty through predictable routines
• Supporting mostly non-speaking autistic adults
• Building independence through everyday activities
• Using meaningful choices to increase participation
• TouchChat and communication-supported choices
• Visual scheduling tools and apps
• Preparing for respite and residential care
• Building life skills through repeated practice
• Starting small when introducing visual supports

Whether you're a parent, caregiver, family member, or professional supporting someone with profound autism, this episode offers practical ideas you can consider adapting to your own situation.

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

For parents and caregivers of profoundly autistic adults, one of the hardest questions is often: Who will provide lifelong care when we can no longer do it ourselves?

In this episode of Autism Labs, Mike Carr explores what families should look for when evaluating residential care for adults with profound autism and complex support needs.

Drawing from his experience as a parent to a profoundly autistic adult and his work with J13, Mike examines residential programs through a family-centered lens. He discusses staffing ratios, overnight supervision, behavioral support, medical readiness, seizure and pica protocols, communication devices, staff turnover, transparency, community participation and plans for aging in place.

Mike also shares five residential programs that made his initial shortlist for further investigation and provides a practical checklist of questions families can ask when touring or evaluating residential services.

The central message is that residential care should offer more than safety. Families should consider whether a program provides opportunities for meaningful relationships, communication, work, recreation, community involvement, dignity and a life worth living.

In This Episode

• Planning for lifelong residential care for profoundly autistic adults
• What families should ask about staffing ratios and overnight coverage
• Evaluating behavior support and restraint policies
• Seizure, pica, and medication safety
• Supporting AAC and communication devices
• Measuring staff turnover and program transparency
• Creating meaningful daily activities and community involvement
• Questions to ask during residential program tours
• Five programs Mike identified for further exploration
• J13's vision for future residential care in Austin

If you're a parent, caregiver, sibling, family member or professional supporting someone with profound autism, this episode offers practical questions to consider as you plan for the future.

About Autism Labs

Autism Labs shares practical information and real-world conversations for families supporting autistic children and adults. Topics include profound autism, communication, behavior, caregiving, adult services, transition planning, residential care and lifelong support.

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

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