In this episode, Mike Carr and Ashley Elliott discuss the challenges faced by parents of autistic children as they age out of the school system at 22, highlighting the limited opportunities and unstructured environment that many autistic individuals face after leaving school. We also emphasize the potential for growth and fulfillment when the right program and environment are provided. Parent Mike Carr shares personal experiences of parents who have seen their children thrive in unexpected ways, and encourages parents to seek out alternative programs and communities that can support their children’s needs and provide a more fulfilling life.
The Journey to Empowering Autistic Adults: Finding Opportunities Beyond the Status Quo
As parents of children with autism, our lives are often dominated by the challenges our kids face, especially during the early years. From diagnosis to navigating educational systems, we constantly work to secure the right help and support for our children. But what happens when they turn 22, and school-based services come to an end? The transition into adulthood is one of the most critical—and often overlooked—phases for children with profound autism.
In this story, we’ll take you through the journey of facing the struggles of when these services stop, the often-limited opportunities for individuals with profound autism, and the stories of hope that prove the possibilities are endless when the right programs and support are in place. We’ll explore what happens when we challenge the status quo and create environments that foster personal growth and independence.
The Dreaded Transition: What Happens When Services Stop?
The moment our child reaches adulthood, we face a harsh reality: the services we relied on to guide them through childhood come to an abrupt halt. It’s a daunting moment for many families—one that’s filled with uncertainty about what the future holds.
When our children with autism turn 18, many school districts no longer offer the support that helped them develop essential life skills, engage socially, or prepare for work. For those with profound autism, the situation is even more complicated. Some may need constant supervision, specialized programs, and safe spaces to interact with the world meaningfully. But often, these resources are nowhere to be found.
We had a conversation with an executive director in Pennsylvania who shared something that struck a chord: waiting lists for adult services in many states can stretch up to 15 years. This wait can start as early as 18 or 19, and even if children qualify for support, it’s not guaranteed until an emergency arises. The uncertainty of this system is devastating, leaving families struggling to find the help they desperately need.
The Status Quo: A Reality for Many Families
So what happens when services end, and no new programs are available? From conversations with parents and transition coordinators, we began to see a common—and often heartbreaking—pattern. Many parents are left with no option but to keep their children at home in a safe environment.
The reality for many profoundly autistic individuals after they age out of services is a life of passive, unstructured activities. Days are spent in front of the TV, playing on a computer, or engaging in minimal interaction. Some parents rely on attendants or caregivers, but even these services often feel like “glorified babysitting,” offering little opportunity for growth or independence.
This situation leaves children without a sense of purpose. Every human deserves to feel accomplished, to feel valued, and to have opportunities for growth. Sadly, many families feel trapped in this cycle because there simply aren’t enough options available to break free from it.
The Path Less Traveled: Exploring New Opportunities
But what if we challenged the status quo? What if we rejected the idea that a child with profound autism must be limited to passive activities and simple safety? What if we looked for new opportunities, ones that we may have once thought out of reach?
For our family, we made a choice to challenge the norms. Our son, Michael, is profoundly autistic, nonverbal, and has significant physical and medical challenges. But through creative thinking, we found that he could thrive in environments we never imagined possible.
One such breakthrough came when we partnered with Crux Climbing Centers, a local climbing gym in Austin, Texas. At first, the idea seemed ludicrous. Michael had never shown an interest in climbing. But we decided to take the leap, and the results were nothing short of extraordinary.
A Leap of Faith: Climbing to New Heights
The beginning was anything but easy. Michael needed an entire team to help him. One person belayed him, another helped him position himself on the wall, and a third filmed the experience. It was a process, with many moments of frustration and challenges—screaming, pulling at his clothes, and dealing with seizures. But through it all, the staff at Crux were equipped to handle these moments, and we worked together to create a safe, supportive environment.
Over time, something remarkable began to happen. Michael started to look forward to his climbing sessions. What once seemed impossible slowly became achievable. Then, after months of consistent effort, something truly special occurred—Michael climbed a 30-foot wall, on his own. This wasn’t just a physical feat; it was a monumental emotional victory for our family. That video of Michael reaching the top is something we’ll never forget. It was a reminder of the incredible potential that exists when we don’t limit our children’s possibilities.
The Role of Community and Support
What made this experience even more profound was the community that developed around Michael. At first, it was a team effort, with staff and volunteers working alongside him. But soon, others at the gym began to take notice. Some gym-goers even adjusted their schedules to be present during Michael’s sessions, offering support and encouragement.
This sense of community, of shared purpose, was transformative for Michael. Eventually, he began working at Crux as a paid employee, cleaning and performing other tasks. This work gave him a sense of independence and accomplishment—things we had never thought possible for him.
The Challenges of Making It Happen
Of course, there were challenges along the way. The most significant was the cost of providing the one-on-one care that Michael needed. For many families with children who have profound autism, accessing such opportunities can feel like an insurmountable obstacle. It requires an investment in skilled staff who truly understand the unique needs of these individuals.
But the rewards? They are immeasurable. Watching Michael climb, work, and engage socially with others has made all the challenges worth it. There’s an old saying: “It takes a village.” And that’s exactly what we saw in Michael’s journey. With the right support, extraordinary things can happen.
Beyond the Status Quo: The Power of Challenging Expectations
The most important lesson we learned from Michael’s journey is this: we should never settle for the status quo. It’s easy to fall into the trap of believing that passive, unstructured activities are the best we can offer, but the reality is that there are countless opportunities waiting to be discovered if we’re open to them.
Parents of children with profound autism often face the daunting task of figuring out what the future holds once school services end. But as we’ve seen, by thinking outside the box and with the right support, we can provide our children with a rich, fulfilling life.
Through programs like J13, we’re dedicated to creating opportunities for autistic adults to thrive in their communities. By partnering with businesses, schools, and other organizations, we’re helping to craft spaces where individuals with profound autism can work, socialize, and truly live to their fullest potential.
A New Vision: Living Purposefully
One of the key takeaways from our experience is the power of living with intention. When we create communities where individuals are supported and empowered, everyone benefits. We want to continue sharing stories like Michael’s to inspire other parents to see the endless possibilities for their children.
If you’re a parent wondering about your child’s future after they age out of school services, we encourage you to think outside the box. It might take creativity, patience, and determination, but the results can be life-changing.
Don’t settle for the status quo. There’s a world of opportunity waiting for you and your child. Together, we can create a future filled with hope, joy, and possibility.
Get Involved and Learn More
If you want to learn more about the programs we offer, or connect with us for guidance, please visit our website at j13.org. Follow our journey on Instagram and YouTube, where we share stories of individuals with autism achieving incredible things.
It’s time to break free from the conventional and give our children the opportunities they truly deserve. Together, we can make a difference and create a brighter future for all.
Transcript
Ashley Elliott (00:12):
Hello and welcome to our Autism Labs podcast. So the last episode we had, Mike was on talking about getting the right help for your autistic child, but this week we want to discuss a little bit more in depth with that in terms of getting the right opportunities that you feel your autistic child deserves to have, especially when they age out of the school system at 22, the services they receive stop. And especially if you have a child who has more profound autism or greater needs, that definitely does impact the opportunities that they receive, even if those aren’t the opportunities you think they deserve. Mike, would you like to go ahead and expound on that?
Mike Carr (00:51):
The school will take care of your kiddo till they’re 22. And then those services in, and I was talking to executive director out in Pennsylvania earlier in the week that is catered to this audience, and I was talking about how the waiting list in Texas is like 15 years. And she said, oh yeah, we’ve got a waiting list in Pennsylvania too. So if you wait until they’re 18 or 19 to get on the list for services, even if you qualify, you’re not going to be off that list unless there’s some kind of emergency. And so when we think about profoundly autistic individuals, which are the ones that typically require more care, what do most parents do when there’s kiddo ages out? And we’ve talked to a lot of these parents, we’ve talked to transition coordinators in school districts, and the story’s pretty depressing and pretty consistent. Their son or daughter goes home because it’s a safe environment. They may be on the computer in their room, they may be watching television. Maybe there’s an attendant or a colleague that comes in during the day so mom and dad can work or mom goes to work. That attendant might take ’em out once a day to go someplace, but it’s pretty unstructured, right? There aren’t a lot of goals, there aren’t a lot of objectives to be accomplished. It’s really not much more than glorified babysitting, unfortunately.
Ashley Elliott (02:16):
You obviously, as a parent with a child with high needs, you want to make sure that they’re safe. This seems to be the best alternative, essentially, like they’re enjoying watching tv. Sure, they could enjoy other things, but what are the alternatives other than maybe a group home? And if that’s not an option for you, what else can you look into?
Mike Carr (02:34):
You don’t have to accept the status quo of having your kiddo at home and they don’t feel good about themselves, and I don’t care what their IQ is, what their challenges are. Every human being in our opinion, has an innate desire to do something that they enjoy and to feel like they’re accomplishing something. And so what Kay, I have discovered, and this is an amazing discovery, is if you put your son or daughter in an environment that you never ever thought they might thrive in, but with the right program in place, it will blow you away. And we’ve seen this time and time again with what they’re able to do and what they enjoy doing that you never thought they’d do. Just amazing.
Ashley Elliott (03:26):
And I feel like there’s this fine balance between you want to set them up for success, but you also want to challenge them. But there’s also, there’s got to be a time and a place for an environment to allow educating while also mitigating behavior. How do you navigate that when you may have children with needs that may act out or have those behavior problems or the inability to communicate or even just medical issues what you do.
Mike Carr (03:53):
We’ve started a nonprofit a couple of years ago to address this. It was such a problem. And so we have a program and we have trained staff with advanced degrees in the fields, whether it’s kinesiology, whether it’s speech, whether it’s special education, whether it’s even nursing that are trained. And so we’ve also found employers, and we have one employer in Austin called the Crux Climbing Centers, and our executive director said, you ought to let your son go there and try climbing. They might even be willing to hire him to clean some of the cubbies, and we think it’d be an environment that he’d enjoy. I thought, this is ridiculous. I mean, our son doesn’t even, he doesn’t understand the concept of holding onto something on a wall. He certainly isn’t going to want to put his foot up. Why would he go there? But we said, well, what do we have to lose?
(04:48):
And it was painful at first. We had to have someone pushing his rear end up someone else taking his arm and putting it up, and then a third person actually taking his foot up to the first thing on the climbing wall. And we just thought, this is crazy. He’s not going to enjoy doing this. But we let it go on for a while and week after week, the crew worked with him and yeah, he’d scream and yell and he’d pull his pants down, but we were prepared ahead of time for the behaviors that he had. And the staff was trained and the folks at the Crux Climbing Gym understood that, look, we’re going to try and do this during the off hours. At first there are going to be some arant behaviors, but we’ve got it handled. He’s even had seizures there and we had a protocol already in place when he has a seizure, here’s what we do.
(05:39):
If we need oxygen, here’s what we do. Plus the staff was nimble and smart and agile enough, and they’ve been trained, they could sort of go with the flow of something unforeseen occurred. So what happened was eventually they got him to climb a 30 foot wall and they showed a video of this. Now it took four people, okay, so you’ve got one person belay our son, you’ve got another person on the wall next to him putting a treat. We bribed him with treats, with edibles. So we put a treat up there, and then you’ve got another person that’s holding the person that’s up on the wall next to our son, and then you’ve got somebody else taking the video or cheering him along. So it was ridiculous. Four people I thought we were amazed that he would do this right? We actually went there to watch him do this and it was incredible, and he had this big crazy smile on his face.
(06:31):
He was having a good time. This took months, but during the course of these months, he really got used to the environment. It was fun. There were lots of community members coming in and just working out. Some people actually changed their workout schedules to be there when our son was there and a couple of his buddies because they just thought it was so cool and they were helping out. They were just volunteering. Hey, I can belay. I can do all this other thing. Well, now he’s got a job there. Right now he actually has a paid job with one of his buddies where they’ll clean, they’ll mop, they’ll do the windows, all this other stuff, and we would never have guessed that this would’ve happened the last, the video they showed us, which brought a lot of emotion to our eyes, he climbed the wall by himself, only a belayer. He liked it so much that without anybody next to him, without the food at the top, he went all the way up to the top by himself. Unbelievable.
Ashley Elliott (07:36):
I think you get to see the fruit of what could be. Sometimes the status quo is not what you want, and you think about where he was to where he is now, being able to climb up. I mean, it’s beautiful. It’s what we all want to have those mountaintop moments, I guess, for lack of a better term to say it with rock climbing. But are there any other downsides that you’ve seen or any issues that have came up along the way?
Mike Carr (07:59):
Well, one of the downsides is certainly the cost, right? It’s expensive to have, first of all, one-on-one staff. So one of the things that was also amazing was some of the folks in the program are more verbal than Michael is. They’re still profoundly autistic, but not quite as profound if you want. And some of them are a little bit higher up the spectrum, and you almost create this brother relationship. So he’s got a buddy and they’ll work together. And now that no longer requires one-on-one Care. So while each of them require their own at attendant, their own colleague, they work so well together, but now just one attendance needed, his buddy can get him to do things that he won’t do for a colleague or a staff member, but they get along so well together. And so Michael likes, for instance, to put an awful lot of spray on a rag for window washing.
(08:57):
He just covers it and his buddy puts one little drop. He’s very meticulous. And so what the staff ended up doing is, okay, Michael’s going to spray because his buddy won’t do that, but Michael can’t reach very high. He’s got a twisted spinal cord, and so he’s not really good at reaching high. His buddy loves the pole. And so Michael will spray the rag and then his buddy will take the rag on the pole and go all the way up to the top of the wall. And so it’s a great team effort. We’ve seen that kind of dynamic work for others too, where you sort of create an efficiency and a better value equation where you can take that staff person or those staff people and spread them out over more folks. And it’s fun and everybody, this is the other thing that I think a lot of the parents have dismissed because they’re just so focused on safety, they don’t want to change the status quo, and they’re okay with the glorified babysitting, but not much more.
(10:05):
If you see your son or daughter in the community working, having a real job and making money and having a good time, because they’ll work for an hour and then they’ll take a break and then they’ll go get to climb, or they’ll go to play ping pong or they’ll always eat or whatever it is. It’s like, oh my gosh, our aspirations, our dreams for what might be a great environment, a joyous and fulfilled life. All of a sudden’s gone up several notches. We had no idea that they would enjoy this. We had no idea that they would actually want to socialize because autistic folks in general tend to be a little bit less social, but you put ’em in the right environment and it is truly amazing.
Ashley Elliott (10:50):
I love that. I went to a luncheon today and they talked about living purposely. And one of the key tenets of living purposely is community. And I think that’s exactly what this is. It’s a community. It’s a community of well-trained, well staffed people, but it’s also community for the greater good and for the purpose that J 13 has, I think it’s awesome. And we build each other up as we go. And I think that’s where that partnership of two people working together actually aids in the longevity. You think of one horse can pull so much, but two horses can pull way more than that. So that’s my country quote for the day.
Mike Carr (11:26):
I think that’s great. And if you want to find out more, this podcast and this YouTube video is going to be on our Autism labs channel, but our nonprofit is actually j thirteen.org or john thirteen.org, either URL. I’ll get you there, and if you want to go to the website, we have pictures of a lot of this activity. The summer camp we have with all these kiddos. I say kiddos, these adults. We also have an Instagram page where a lot of the videos, you can go see the shorts and whatnot. I’m not necessarily trying to sell anybody on this because we’re just in Austin right now and we’ve got limited capacity. But what I do, the point I want to make as a parent to the other parents that are out there is you owe it to yourself. You’re not going to feel strange. You’re not going to feel put upon to at least think about my son or daughter can get so much more out of life if I put him in a program like this, or if I start a program like this, and we’ll help you do it. I mean, we’re happy to provide free advice and guidance, reach out to us, we’ll get on a call and share with you where we’re at and what we’ve learned. It is just a game changer, and you’re going to be able to sleep at night feeling a whole lot better for the future of your son or daughter.
Ashley Elliott (12:47):
Thanks so much for sharing. I love this story. I think it’s just, it’s up from here. We’ve got a lot more stories to tell, a lot more smiles to share. So thank you guys, and stay in touch.
Mike Carr (12:57):
See you.
