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 of Finding Jobs for Autistic Adults Beyond the Status Quo
As parents of kids with autism, we live in the trenches. From that gut-punch diagnosis to fighting tooth and nail through broken school systems, we’re constantly scrambling to get our kids what they need. But here’s what keeps me up at night – what the hell happens when they turn 22, and the school bus stops coming? The transition into adulthood is when the bottom falls out, and nobody seems to talk about it until you’re staring into the abyss.
In this story, I’m going to get real about what happens when those services disappear, the garbage options that are often all that’s left, and some stories that might actually give you a glimmer of hope that things can be better. I’ll show you what happens when we stop taking no for an answer and start demanding more for our kids.
The Dreaded Transition: When the Safety Net Vanishes
The day your child hits adulthood, you slam face-first into reality: all those services you’ve fought for years to get suddenly evaporate. It’s like falling off a cliff.
When our kids with autism turn 18, most school districts basically wash their hands of them. No more help with life skills, no more social opportunities, no more job training. For those with profound autism, it’s a nightmare. Some of our kids need eyes on them every minute of the day, specialized programs, and safe spaces where they won’t get overwhelmed or hurt. But those resources? They’re as rare as unicorns.
I’ll never forget talking to this executive director in Pennsylvania who dropped this bomb on me: waiting lists for adult services in many states can stretch to 15 freaking years. Kids can get on these lists at 18 or 19, but even if they qualify on paper, they might not get a damn thing unless there’s some kind of massive crisis. It’s beyond broken, and it leaves families like ours desperate and terrified.
The Status Quo: The Ugly Truth for Many Families
So what really happens when the services end and there’s nothing to replace them? After talking to parents who’ve been through it, I started seeing this soul-crushing pattern. Most parents end up with their adult children at home, basically just trying to keep them alive and safe.
The reality for many folks with profound autism after they age out is depressing as hell – days spent zoning out in front of the TV, mindlessly scrolling on an iPad, or just sitting around doing nothing. Some parents manage to get attendants, but let’s call it what it is – it’s often just babysitting for grownups, with zero actual growth happening.
This situation sucks the life out of our kids. Every human being needs to feel like they matter, like they’re doing something worthwhile. But so many families are trapped because there’s nowhere else to turn, no other options that seem possible.
The Path Less Traveled: Saying “Screw That” to Low Expectations
But what if we refused to accept this crap? What if we told all those “experts” with their low expectations to shove it? What if we started looking for opportunities that everyone else said were impossible?
For our family, we hit a breaking point. Our son, Michael, is profoundly autistic, nonverbal, and has some serious physical issues. But we decided that sitting at home watching TV for the rest of his life wasn’t good enough. Not by a long shot.
Our breakthrough came when we hooked up with Crux Climbing Centers, a local climbing gym in Austin. When I first floated the idea, people looked at me like I had three heads. Michael climbing? The kid who can barely walk across the room without support? But we were desperate enough to try anything, and thank God we did.
A Leap of Faith: Climbing to New Heights
The beginning was a shit show, I’m not gonna sugarcoat it. Michael needed three people just to get him on the wall – one on belay, another practically holding him in place, and another documenting the whole mess. There were epic meltdowns – screaming that could shatter glass, trying to rip his clothes off, seizures – you name it. But the staff at Crux didn’t run for the hills. They stuck with us through the ugly parts, and slowly, we found our rhythm.
Then, something started to shift. Michael began looking forward to climbing. The meltdowns got fewer and farther between. And then came the day I’ll never forget as long as I live – Michael climbed a 30-foot wall, by himself. This wasn’t just climbing – it was him giving the middle finger to every limitation everyone had ever put on him. That video of him reaching the top? I’ve watched it so many times I’ve worn out the damn play button. It reminds me that the “experts” don’t know shit about what our kids can do.
The Role of Community and Support
What blew me away wasn’t just Michael’s progress – it was how the community rallied around him. At first, it was just the staff and a few diehards helping out. But then something amazing happened. Regular gym-goers started showing up specifically during Michael’s sessions. They’d adjust their own workouts to be there, cheering him on, high-fiving him (when he’d allow it).
This sense of belonging, of being part of something bigger than himself, lit something up in Michael. Eventually, he started working at Crux – not volunteer work, not busy work, but a real job with a real paycheck, cleaning and doing other tasks. Seeing him cash that first check was better than anything I’ve ever felt in my life. Things we’d been told were “not appropriate goals” for him.
The Challenges of Making It Happen
Look, I’m not going to pretend this was easy or cheap. The biggest hurdle? Cold, hard cash. Providing the one-on-one support that Michael needed costs an arm and a leg. For a lot of families barely keeping their heads above water, these kinds of opportunities seem like a pipe dream. It takes serious money to hire people who actually get our kids and don’t bail at the first sign of trouble.
But the payoff? Worth every penny we didn’t have. Every night I stayed up worrying about how to make it work. Watching Michael climb, work, and connect with people has changed everything – for him and for us. It really does take a village, but most of us are trying to build that village from scratch.
Beyond the Status Quo: Telling the “Experts” to Shove It
The biggest lesson from Michael’s journey is simple: don’t listen to the people who tell you what your kid can’t do. It’s so easy to fall into believing that keeping our kids safe and quiet is the best we can hope for, but that’s bullshit. There are opportunities out there if we’re stubborn enough to find them and fight like hell to make them happen.
Parents of kids with profound autism spend countless nights staring at the ceiling, terrified about what happens after graduation. But Michael showed us that if we refuse to take no for an answer and find the right people to help, our kids can have lives that actually mean something.
Through J13, we’re trying to create more opportunities for adults like Michael. We partner with businesses and organizations to create spaces where people with profound autism can work, connect, and actually live instead of just existing.
A New Vision: A Life That’s Actually Worth Living
The most important thing we’ve learned is that every life needs purpose. When we create communities where everyone has value and something to contribute, it changes everything. We share stories like Michael’s because we want other parents to know that the usual crap options aren’t all there is.
If you’re lying in bed at 3 AM, terrified about your child’s future, we want you to know that there can be more. It might take every ounce of fight you have left (and then some), but there can be more than just survival.
Don’t settle for the scraps the system throws at you. There’s a world of possibility out there for your child if you’re willing to kick in some doors and demand better.
Get Involved and Learn More
If you want to see what we’re doing, or if you need someone who gets it, check out J13.org. Follow us on Instagram and YouTube, where we share stories that might give you a reason to keep fighting.
It’s time to stop accepting the garbage options we’re given and start demanding the opportunities our kids deserve. Because if we don’t fight for them, who will?
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.
