Mike and Kay Carr discuss the challenges of transitioning their profoundly autistic adult son into life after school, emphasizing that traditional transition programs often fail for those with severe disabilities. They describe their personal journey with their 34-year-old son, who, like many others, faced limited opportunities due to behavioral challenges and a lack of appropriate programs. They outline the obstacles, including long waiting lists for services, high costs of care, and the emotional toll on families. Despite these challenges, the Carrs advocate for a “transformation” approach, focusing on creating a community-based, person-centered program that promotes autonomy and provides consistent, enriching activities. They are working with other families to set up a supportive living arrangement, where their son and others can live more independently, learn life skills, and engage in fulfilling daily routines.
Waitlist link: https://www.thearcoftexas.org/get-involved/waiting-2/
Transitioning to Adulthood: Navigating the Challenges of Severe Autism

Mike and Kay Carr’s journey into the unknown world of adulthood for their profoundly autistic son began years ago. Their son, now 34, has faced every challenge imaginable—some too difficult to even put into words. Like so many others with severe disabilities, adulthood brought a series of obstacles that no one could have prepared them for. And as they walked this challenging road, one thing became glaringly clear: traditional transition programs simply weren’t enough.
In this post, Mike and Kay share their personal story, recounting the hurdles they’ve faced, the emotional toll it has taken, and the bold new approach they’re now advocating for—one that could transform how we support individuals with severe disabilities as they enter adulthood.
The Traditional Transition System: Why It Falls Short

For most children, the transition from school to adulthood comes with challenges. But for those with profound autism, the world feels like a different place entirely when the school doors close at age 22. That’s the age when many children with disabilities “age out” of their educational programs, and the reality sets in: there is no clear path forward.
Mike knows this all too well. “Most transition programs are designed with a broad spectrum of disabilities in mind, but they tend to focus on more mild cases,” he explains. “The truth is, there just aren’t enough programs for individuals like our son, who need more intense, specialized care. The options that do exist are often overcrowded, underfunded, or simply not suited for people with profound disabilities.”
To make matters worse, the transition programs that do exist are often based in group settings or institutional environments. These settings prioritize efficiency, not autonomy. There’s no space for individuality, and that lack of tailored care leaves families like Mike and Kay’s to pick up the pieces themselves.
The Struggles of Limited Opportunities

The lack of suitable programs is only the beginning. Mike and Kay faced additional barriers, ones that most people don’t even think about: waiting lists that stretched for months, and sometimes years. “Waiting lists are a constant frustration,” Kay recalls. “We were told that we were on a waiting list for this service or that, only to be told it could take ages before we’d see any help.” The lack of resources created a situation where families were left to figure things out on their own.
This struggle wasn’t just an inconvenience; it was a financial burden. “Our son’s needs are so specific, and the costs for the care he requires are enormous,” Mike shares. “It’s emotionally and financially draining. Families pour all their resources into these services, but sometimes it still doesn’t feel like enough.”
For families in similar situations, the emotional toll can be just as taxing as the financial strain. The stress of long-term care, the weight of constant decisions, and the overwhelming isolation can make it feel like there is no way out. The idea of a future where these burdens lighten feels like a distant dream.
The Emotional Toll on Families

Raising a child with severe autism is a lifelong commitment, and that doesn’t change as the child reaches adulthood. For Mike and Kay, the emotional journey has been filled with both hope and heartbreak. They often found themselves caught between optimism for their son’s potential and the sorrow of knowing that, no matter how hard they worked, their son would never have the same opportunities as his peers.
“It’s heartbreaking to watch our son grow up and know that he will always face limitations,” Kay reflects, her voice tinged with sadness. “But he’s full of potential. It’s so difficult to see that potential unrealized because of a lack of resources and support.”
But the toll didn’t stop with them. Siblings of children with severe autism also feel the weight. Guilt, confusion, and frustration often cloud their relationships. Friends and extended family, too, struggle to understand the intricacies of what the family is going through, adding to the stress.
Despite these heartaches, Mike and Kay refused to give up. They refused to accept the status quo. They decided it was time to advocate for a different approach—one that would help individuals with severe autism transform into thriving adults.
A New Approach: Transformation, Not Transition

The Carrs’ vision for the future goes beyond the typical transition programs. They are calling for a transformation in how society views the transition into adulthood for individuals with severe autism. Instead of trying to force individuals into programs that don’t fit their needs, they’re working toward a person-centered, community-based model that focuses on life skills, independence, and meaningful engagement.
“We don’t want our son to just go through the motions of life,” Mike says with determination. “We want him to thrive. With the right support, he can. We don’t see people with disabilities as ‘broken’—we see them as individuals with unique strengths, and we want to help them live fulfilling, meaningful lives.”
Their approach focuses on giving their son—and others like him—more control over their lives. It’s about helping them find a community where they can live independently, interact with peers, and engage in daily activities that build life skills. This approach also emphasizes the development of critical abilities like budgeting, cooking, and personal hygiene. It’s about giving these individuals the tools they need to succeed in a world that often makes no space for them.
Building a Supportive Community

The heart of the Carrs’ vision lies in creating a supportive community—a group of families who share a common goal: to build a world where adults with severe autism can thrive. By working together, they aim to pool resources, share knowledge, and create an environment where their loved ones can live with dignity and purpose.
“We’re not in this alone,” Mike emphasizes. “By collaborating with other families, we can build a better future for everyone. It’s about sharing resources and supporting each other.”
The Carrs are also partnering with local organizations, professionals, and community members to ensure that the model they’re working on provides the right care and support. This holistic, inclusive approach extends beyond just the families involved—it’s about creating a larger network of people committed to making a difference.
“We’re hopeful that our efforts will inspire others to rethink how we support people with severe disabilities,” says Kay. “The more people understand that there’s a better way to transition into adulthood, the more likely it is that we’ll see real change.”
Looking Toward the Future

The road ahead isn’t easy, but Mike and Kay Carr are determined. They know the journey to a better future won’t be quick or simple, but they are committed to fighting for their son and others like him. Their new approach isn’t just a model for transition; it’s a call to action for families, communities, and organizations to come together and create a world that supports individuals with severe autism.
With determination, collaboration, and a focus on lasting change, Mike and Kay are confident that the future can be brighter for their son—and for countless others. The journey has only just begun.
Transcript
Mike Carr (00:07):
Hi, this is Mike,
Kay Carr (00:09):
And this is Kay.
Mike Carr (00:10):
And welcome to the second episode of Our Journey with respect to transition as parents of a 34-year-old profoundly autistic adult child. And we want to talk about transition differently and hopefully much more optimistic and much more exciting. We know for many of you, it’s just super stressful and it was super stressful for us for many years too. There’s so many things to worry about what’s going to happen when they age out of the school system and all this other stuff. So we want to talk about really more of a transformation than transition.
Kay Carr (00:50):
And as we all know, transition is any change from one environment to another in the world of special needs and disabilities. It’s particularly challenging. We all have transitions in our lives from home to college to living alone to living with partners. So our sons and daughters go through this also, but to a much lesser extent because they have fewer transitions in their lives. But certainly they’re going to change. They might move, you might move to another home, they’ve got to transition, or they might change a program that they’re going to, in this case, they might be coming out of school or they might change a job. And all of these require some type of transition.
Mike Carr (01:33):
So in the transition for someone, their parents that have someone that’s level three autism or severely autistic or profoundly autistic is sort of a different animal for your other kiddos that aren’t faced with those same challenges. So for a special needs student, it’s really helping them prepare to leave school and enter adulthood with certain life skills and other things in place. Now, it might work well for students that are verbal and who have minimal behavior issues,
Kay Carr (02:10):
But it rarely works well for our kids. The students who have limited or no speech, who have challenging behaviors like PICA or aggression who have other disabilities. And it’s very difficult for profoundly autistic students to go through this transition process. So the typical transition process might look like this,
Mike Carr (02:32):
And so often it may start at the age of 18, but quite honestly, the earlier you start the better. But let’s say you start at 18. So it’s typically a four year process, at least at school. So you start at 18, and then you age out of the school system at 22. Now, you might attend school from 18 to 22 at a different location than your high school, or it might be in a different, but it’s certainly a somewhat different environment than what you’re used to and what a student’s used to just going through the grades in a normal high school.
Kay Carr (03:08):
And the 18 plus programs typically include things like job skills, job training, many employment opportunities, and sometimes job trials tries different jobs to see what they like or don’t like. And generally, the more profoundly autistic students are left out of a lot of these steps and programs, their communication and behavior typically gets them classified as unemployable either by the state workforce, which was our experience in Texas, or they don’t qualify for the organized transition to work programs like the Go Project in Texas, which again was our situation. Our son did not qualify. So the classification means that the schools have very few options available for this population. And as my son’s last special ed teacher said, this population will sadly be transitioning to home.
Mike Carr (04:10):
So how is this a good thing, right? They’ve been in school their entire lives. You’ve hopefully been getting a fair amount of support in terms of AIDS and lower classroom sizes and therapies and programs to get them ready to enter the real world. And because your son or daughter is level three, autism, more severe, autism perhaps nonverbal, may have behavior problems, may have seizures, may have pocket behavior, all this other stuff, the school just sort of throws it back in your lap. Well, you know what? Your kid really is unemployable. And so guess what? Mom and dad, when they turn 22, they’re out of their system and they’re transitioning right back to home, where now it’s on. You’re back as parents or if you’re the son or daughter or the sibling of a brother or sister who’s profoundly autistic, you may be worried about what’s going to happen when mom and dad can no longer take care of them. So it’s a real problem that you’re now facing.
Kay Carr (05:10):
So as typical parents, you probably now try to seek out services from other government agencies only to find out that there are these huge waiting lists. These waiting lists unfortunately can be scary long in Texas for HCS, the wait list is currently around 20 years, and other wait lists are decades long. So if you want to know more about wait lists in Texas, we’re going to provide a link for those at the end of this podcast, and you can take a look and see what’s going on with that.
Mike Carr (05:44):
Okay, so 20 years is absolutely obscene in my opinion. I mean, how in the world are you supposed to wait 20 years for the support and the services you actually qualify for right now, but maybe you’re in a state where the waiting list isn’t 20 years, maybe it’s 10 years, or maybe it’s two years, it’s still a waiting list. And so what are you going to do while you wait? Well, you have to tap into other resources. So of course, some parents tap into private insurance. You might have a lot of money with stock away and savings. You may even have a high paying job, but you’re going to need these resources to get the kind of support that your son or daughter was receiving at school. There might be a local government agency that has some amount of discretionary general funds available, but even those funds usually are very small compared to what your total need is going to be to give you that kind of support.
Kay Carr (06:36):
And it’s very expensive to provide the one-on-one care that’s needed for these profoundly autistic individuals. We’ve estimated that it often exceeds a hundred thousand dollars a year. So that’s just a ballpark number that we use. So even if you have insurance savings or a good salary, you often find yourself running out of resources long before you get to the top of these wait lists. So in Texas, by the way, the insurance will run out for a therapy when your child becomes an adult. So there are other factors. When you’re trying to figure all this out and you’re trying to put all these resources and funding sources together to run your own program, you have to think about all these little gotchas, and you’ve got to be sure you think ahead and mitigate those.
Mike Carr (07:23):
Right? Now, you guys may think a hundred thousand dollars is a whole lot of money, which it is, right? But if your child qualifies for one-on-one care, which our son does in the state of Texas, if you’re on the class system, you can get up to $115,000 thereabouts per year. If you’re on the HCS waiver, that number goes up into the 160, $170,000 range. Now, that is assuming other medical issues besides just autism perhaps. But the state has already recognized how expensive this is, and if you get to the top of the list, at least right now, that’s sort of the level of support that you can count on. If you have someone that really has multiple disabilities and needs a lot of help. Regardless though, when your child exits the school system, what we’ve learned over the years is you really need to set up a program with the staffing, with multiple folks coming in with the redundancy tailored to your specific child’s needs.
Kay Carr (08:31):
This can be very challenging. So you can try to cobble together all this help. You can say family, friends, I don’t know, church people, professionals, you know, can try and put all this together, but it’s not ideal. And especially if these people are not being paid, then you may not be able to count on them. So this is often how transition works. There’s this period of hope followed by one of dismay when you feel completely overwhelmed by the weight of the future of your child, and you think they’re going to be living at home or somewhere else, but without support and programs they need. And now you’re thinking, how am I supposed to take care of my child, my profoundly autistic child for the rest of their life?
Mike Carr (09:16):
So we have been on this path probably a lot longer than many of you since our son is 34. When he was first diagnosed all the way back in 1990, the incidence was one in 10,000. So there weren’t very many parents like us that had an autistic child. But what we’ve learned and what we want to do today and for the next few months in these episodes is change the conversation from one of transition to transformation. And transformation to us means a profound, long lasting change, a significant game changing, long lasting change that creates a new way of being for your son or daughter, and quite frankly, for you guys too. So you’re not burdened with this every day and can’t go on vacations, it can’t even go out to eat. Or if you’re a brother and sister, all the worry about how am I going to take care of my sibling? So transformation is the type of journey that we’ve embarked on for our son and with a few other adult children in the Austin area. And it’s a journey that we’re going to share with you in the coming months where we envision some pretty cool stuff.
Kay Carr (10:29):
We’re kind of thinking about navigating a new model, and our son is going to be part of a program that’s in the local community with other adults on the spectrum, some of who are going to be profoundly autistic, and some may be a little higher functioning and maybe some in between. And the success and the relationships are going to evolve into this new community living situation where parents partner up and set up a pilot program for a separate home for our adult kids.
Mike Carr (11:01):
And so the idea is, and we’re part of the way there, so this isn’t all just wishful thinking, but each day is going to be filled with a whole lot more than just glorified babysitting, right? They’re not just sitting in their room on the computer playing video games by themselves day after day. That’s not what we’re talking about. We’re talking about learning opportunities, job training, recreational activities. Michael gets outside of our house every single day, seven days a week with colleagues going to different places. So these are challenging, but enjoyable person-centered planning. It’s the result of person-centered planning, challenging and enjoyable activities where we’re actually working towards some goals for Michael that we’ve set based upon where he’s at with the help of our BCBA and our staff. The whole idea is to improve their autonomy, their ability to live on their own with less help and create this environment of collaboration amongst all the therapists and the colleagues so everybody knows what everybody else is doing. While Michael can spend time, not just with them, but with other folks that are profoundly autistic too, or maybe a little bit higher functioning
Kay Carr (12:19):
And thinking is at the end of the day, he will be a bit tired, yay, from all the physical activity, which he does get quite a bit, and mental stimulation, which definitely wears him out. But he’ll be happy, he’ll be smiling, and in this situation, if he could speak, he would have stories of a fun day that he had experienced.
Mike Carr (12:44):
Now you’re on this journey with us, so we’re not there yet. As a matter of fact, yesterday we decided to make an offer on a house in Austin with another couple that has a son like our son that’s going to sort of become the crash pad. So we’re going to tell you more about this over the next few months to see how this actually works. But the hope is that on the weekends or whenever you need a break, this is the idea we have, and there’s several other sets of parents that are interested in this. Home is going to be a place that Michael’s used to going that the other adult autistic kiddos are used to going to. It’s got four bedrooms, three baths, so there’s a place for the staff person to stay overnight. It’s large enough that other colleagues can come in and visit.
(13:34):
It can accommodate up to three folks like Michael at the same time, and it’s going to be fun. They go to the crash pad, they get to stay up at night maybe and watch a movie, or when they get up the next day, they leave on Saturday morning and they go to the park or they go to some event. I mean, who knows what, but it’s not going to be just this place where they’re isolated by themselves over the weekend or when you’re out of town for a few days because you want to take a vacation. It’s really a place where they’re going to hopefully have the kind of experience that someone their age would have anyway if they could live independently, but they can’t. So they’re going to be colleagues around them, whether it’s a rec therapist or someone else that has training that can do things with them as a group that super fund unfamiliar surroundings so they don’t freak out with familiar staff, and then hopefully some others in this day program. And then at night too.
Kay Carr (14:29):
So the idea is they learned how to live without us around without mom and dad. This is going to include all the daily skit living stuff is going to get taught how to do their laundry, how to make their beds, how to prepare the meals, how to take an effective bath, not just cursory bathing that we all know about how to brush their teeth correctly, how to live a normal life with proper hygiene. I think that’s important. They’re going to receive enough help so they can slowly become more and more autonomous. And the idea is to teach them to become as independent as possible, but to have as much freedom as they can handle. There’s going to be guardrails in place, obviously, because we want to keep them safe. We don’t want them taking on too much. My son, if he starts taking on too much, he starts breaking things. And we also don’t want them slacking off, which this is really easy. Things slide, and all of a sudden they’re not doing the things that they’re capable of. So it’s very important to have the guardrail on that end too, so that they’re not doing too little.
Mike Carr (15:39):
And we’re going to share with you guys some of the things we’ve already learned. So for instance, our son doesn’t like to take a shower. So what Kay has done, which is really cool, is she’s taken pictures of each step of the shower process. She’s laminated them. We have a waterproof magnetic board up inside the shower. So he goes inside the shower and step by step, he follows the pictures. He knows how to shampoo his hair, he knows how to rinse his hair, he knows how to bathe himself, where to bathe himself, and he’s taking the pictures off the magnetic board and putting them in a waterproof tray inside the shower. And we’ll take you through that in more detail at an upcoming episode. But for each one of these challenges, whether it’s bathing, whether it’s brushing teeth, whether it’s getting dressed, whether it’s preparing a meal, we’ve gone down this path and we’ve done just about everything you can imagine wrong, multiple times wrong.
(16:34):
So where we’re going, the grand vision is we’re going to have a full residential program. That’s why we’re buying this house, that for a while it’s going to be the crash pad, but ultimately the idea is going to be that when we no longer can take care of Michael or when we’re out of town for an extended period, because we’re going to go see our grandkids, there’s going to be a place that he’s familiar with, he’s used to going to with staff, he’s familiar, that take him out in the community every day, whether it’s to work, go to an athletic event, go out to eat, just to hang out with buddies, maybe play basketball in the local park. There’s something every day, including weekends and holidays, that helps him enjoy life, right? And be challenged by life up to where it’s not too frustrating for him, just like any other adult.
(17:17):
Now, you can’t do this by yourself. We’ve tried doing things that quote weren’t a full program, but what we’ve learned is if you have others that want to be involved, we started a nonprofit. We’ve hired A B, CB, A to run it. We have trained staff from the local university that graduated with advanced degrees, whether it’s special ed, kinesiology, whatever, that enjoy this, this is their calling, and there’s enough activity because it’s not just Michael’s program. This is key. It’s not just for your kiddo by themselves. It’s not sustainable if you do that, right? Well, what happens when the colleagues want some type of career advancement? Well, if they’re only taking care of your son or daughter, what are they going to do to grow their career? You lose ’em. And we’ve had this problem for years, but if you get enough folks involved in the program, and right now we have seven kids in the day program through our nonprofit, John 13, not all of them will necessarily migrate into the residential, and we’ll certainly be adding more.
(18:18):
But the idea is when you have half a dozen, a dozen, then you have advancement opportunities for the staff. The kids themselves have a lot more fun, right? Michael, with his buddies, they get together and they have a much better time, and they get to do all kinds of cool things outside of the home that wouldn’t be nearly as much fun as if they were by themselves or if they were just one other friend. So that’s sort of our vision, is moving this program forward and doing it through our nonprofit, John 13. And if you’re interested in, you can go to john thirteen.org. That’s just the day program right now, and take a look at what we’re doing there.
Kay Carr (18:55):
So this is our idea of transformation. Now, your transformation may look different, but we’re thinking that we’ve tried a number of things, and this is where we are. The thinking is every day we’ll have challenges. It’ll be mixed with fun activities, but also there’s going to be growth, joy, and excitement for our son. And this is really key, and it sounds ridiculous, but no one’s going to get kicked out of the program for their behaviors. This has been an ongoing problem in our situation. The problem has been more, he never gets into the program because of his behavior. But I have friends, and I know lots of people who’ve had kids get into programs and then get kicked out of programs because of their behavior. And this is not the way that a parent putting their child and trusting their child to a program that’s supposed to be a lifelong program where you can understand that your child will be taken care of when you’re gone, is very, very important. And when you have the fear of, we call it fear of getting kicked out, you have this fear, then you never know if you’ve succeeded in that lifelong planning for your child. So we don’t want to have to worry about that. We want to worry more about the fun, the activities, and our son leading a truly enviable life.
Mike Carr (20:22):
And this may sound too good to be true, but this is really what we’re committed to as parents. And we have other parents that I think share this vision in this dream that part of that enviable life is absolute trust in the staff, in the program, that whatever behavior arises can be managed. And we’ve so far had a variety of different individuals come into the day program with all kinds of severe behavior, and they’ve been kicked out of other programs in the past, not a single one of them. It’s been kicked out of our program. That’s not our philosophy. Our philosophy is, look, if you buy into what we’re doing, and if you really think this is the way to go, we can have the program in place. We can anticipate all types of behavior and have already protocols in place so that when someone arises, it’s been anticipated, it’s been practiced.
(21:19):
Colleagues know how to step in. As an example, we had a new citizen join us, big guy, and he was sitting right next to Michael on a sofa, and the colleagues were on either side. One of ’em should have been between them. But anyway, and so Michael likes to pinch people when he’s being ignored. So he pinched this new guy. Well, the new guy didn’t like it, and so the new guy smacked him, didn’t smack him that hard, but hit him. Well, within two seconds, colleagues had intervened. Right? Now, you may say, that should never happen. Mom and dad, anybody that’s been doing this, this stuff is going to happen, right? I don’t care how great your program is, you’re going to have things that come up that you had thought you could have prevented, and they’re just going to happen. Alright? My point is, while that shouldn’t have happened, things like that do occasionally happen.
(22:08):
We have protocols in place. The colleagues immediately stepped in. No one got kicked out. Michael wasn’t hurt. The other guy had a bruise from the pinch, but his parents understood. As a matter of fact, his parents were relieved that he wasn’t the one that was blamed for hitting and getting kicked out of our program. So this is the kind of stuff that we probably all have experienced, but we’re really committed to hopefully going down this journey with you over the next few months, maybe even years in this podcast and these YouTube videos, and sharing with you more of what we’ve learned, some of these kinds of mistakes, specifically how we’ve overcome them. So we’ve talked in sort of generalities so far, we’re going to start getting into some very detailed things, like exactly how do we handle that situation? What are the protocols? How do we accommodate certain behaviors? What does the program actually look like? So please stay tuned. We think this is going to be a fun and exciting journey. It won’t always be super, super positive. We’ll probably run into some roadblocks, but we’re certainly going to share those with you, and maybe together we can figure out how to navigate this successfully. Thanks for listening in. Bye-Bye
Kay Carr (23:16):
Bye-Bye.