Respite Care for Autism: Hope After Aging Out

If you’re the parent of a profoundly autistic son or daughter, you already know the fear I’m talking about. It’s 2 a.m. What happens to my kid when I can’t do this anymore? I’ve lived that thought for years with my son Michael, and my friend Jon has lived it with his son Sam. In this post, I’m walking through a real conversation Jon and I had about aging out of the school system, finding real respite care for autism and building something that actually holds up when life gets messy. This isn’t a theory. This is what we’ve built, broken and rebuilt with our own hands.

Key Points

• Respite care for autism isn’t a luxury, it’s the difference between a family surviving and a family flourishing, especially when your son or daughter ages out of the school system.
• The single biggest predictor of whether a program works long-term is leadership and staff culture, not the building or the budget.
• Low staff turnover (under 10%) is possible, but it takes real pay, real backup systems and a culture that treats caregiving as more than a job.
• You don’t need to invent something from scratch. There are families and programs like J13 that are open sourcing everything they’ve learned.

Why Respite Care for Autism Matters More Than People Think

Most people hear “respite care” and think it’s just a break for mom and dad. It’s so much more than that. When Michael goes to J13 for a couple of nights, he’s not just being watched, he’s climbing a 60-foot wall, cracking jokes, forming friendships with guys and gals he’d never meet if he were stuck at home or in an isolated group setting. Jon put it perfectly when he talked about Sam and Michael finally having “space”, not being in fight or flight mode, not having their bodies betray them and being given room to actually grow. That’s what good respite care for autism gives a family: Room to breathe and room for your kid to become more of who they really are.

Why Is My Autistic Adult Becoming Aggressive?

Most bad behavior in young people, even adolescents, has some kind of physical root to it. For Sam, it’s OCD flare-ups. If you ignore that when his body is “off,” you’re going to have a hard day. Before you assume it’s aggression. It’s worth asking what’s happening physically first. Pain, sensory overload or unmet routines. To get the body right, then you can work on everything else.

What Can You Do When Services Don’t Exist?

This is the question that keeps a lot of parents up at night and it’s the one Jon and I get asked constantly. Jon’s honest answer: He assumed he’d have to invent something himself, because nothing that fit Sam actually existed. They tried partnering with an existing disability organization in Austin and it didn’t work. It was in his words, trying to fit a square peg in a round hole. What eventually worked was starting small (a day program), building trust and only then growing into something bigger, like the transition program (R2R) that helps prepare young adults for eventually living away from mom and dad. You don’t need the whole system built on day one. You need the first right step.

How Do You Build a Program That Doesn’t Fall Apart?

Leadership is everything. Not the facility, not the funding first, the person at the top. You need someone mission-driven, emotionally connected and genuinely invested and then you build structure around that person so they can build a real culture. That’s the “secret sauce,” as Jon calls it. It’s also why this rarely works with just one or two families trying to go it alone, you need enough critical mass to have real staffing redundancy.

The Turnover Problem Nobody Talks About

When Kay and I were trying to do this ourselves with six or eight caregivers, we’d lose over half of them every year, sometimes as high as 75% turnover. It wasn’t always about pay. A lot of it was caregivers not understanding that a commitment they made months ago mattered more than a last-minute date or concert invite. At J13, we built a real call-out system with backups and even backups for backups. It sounds excessive until you need it. Turnover there has stayed under 10%. That kind of consistency is everything for someone who needs a long runway and familiar faces.

What You’ll Learn

• Why physical health is often the hidden root of behavioral struggles in autistic adults
• Why “aging out” of school doesn’t mean the growth stops, it can be where it accelerates
• What separates a respite program that lasts from one that quietly falls apart
• Why staff turnover is the metric parents should be asking about first
• How to think about independence for someone who will never live fully unsupervised
• Why starting small (a day program) can be the smartest first move
• How to hold onto hope even when the diagnosis feels “set in stone”

Notable Quotes

• “He’s not in fight or flight mode. He’s not freaked out. He’s got emotional space to learn and grow.” -Jon Hockenyos (02:40)
• “There is no such thing as failure. You learn from your mistakes.” -Mike Carr (03:19)
• “J13 creates the context for Sam to not only be the best version of himself, but to realize for him the equivalence of separation from mom and dad and independence.” -Jon Hockenyos (04:58)
• “He’s with people who respect him and who treat him not as a disabled person, but as a valued member of the community.” -Jon Hockenyos (04:58)
• “Leadership is everything. You’ve got to build an institutional and organizational culture.” -Jon Hockenyos (07:22)
• “You need people who see this as more than the job.” -Jon Hockenyos (11:04)
• “Most bad behavior from young people, even adolescents, has some kind of a physical root to it.” -Jon Hockenyos (13:17)
• “If you can see the possibility of that, then you can see the possibility of hope.” -Jon Hockenyos (14:21)

Resources & Links

• J13 (j13.org) – the nonprofit day and respite program Mike and Kay founded, built around long-term staff culture and community for profoundly autistic young adults.
• Autism Labs (autismlabs.com) – the podcast home for this conversation, where listeners can leave questions or comments for Mike and Jon directly.
• Crux Climbing – the climbing partner organization mentioned as a key part of J13’s physical and confidence-building programming.
• Sling – the scheduling/communication tool J13 uses to manage caregiver call-outs and backup coverage.

Timestamped Outline

• 00:05 Reintroducing the conversation and what parents in the program have witnessed
• 01:42 The story of Michael learning to climb and what it revealed about his drive
• 02:40 Jon on emotional safety and “space” as the foundation for growth
• 04:03 What Jon would tell himself three or four years earlier
• 05:28 Michael’s shift from missing home to feeling at home at J13
• 06:37 What “minimum critical mass” looks like for starting a program
• 09:07 The turnover numbers and why they matter so much
• 11:04 Why pay and culture both have to be real, not just talked about
• 12:04 Hope and what’s still ahead for residential care
• 13:17 Final advice: recalibrating expectations and finding your child’s own measure of growth

FAQ

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Transcription

Mike Carr (00:05): Well, welcome back. I wanted to talk to you about the second part of our dad-to-dad conversation with Jon and his profoundly autistic son, Michael and my son as well. We’re continuing the conversation from last week: this journey, what we’ve both learned, aging out of the school system and how to get ready for independent living. So here we go.

I think a lot of the parents we both know, who’ve participated in J13, have seen things they never imagined their son or daughter could do. You mentioned humor earlier there was a suspicion he had it in him, but seeing it come through makes him a more real person. His real essence shows through. He’s more fun to be around. He forms bonds with other guys and gals naturally. But if you’re in an isolated environment or a group home that doesn’t encourage those interactions, that often just doesn’t happen.

With Michael, we never thought he’d climb. He didn’t even understand the concept of holding on. What in the world would he do climbing a wall? They worked with him for months. But finally he started climbing. And to see, as a parent, that he had that innate drive, that desire to succeed and then to watch him push through physical challenges to the point where he can now get up a 60-foot wall on his own, with just a belay rope for safety… that’s pretty amazing.

So, are there other experiences you’ve had like that you’d want to share?

Jon Hockenyos (01:42): The climbing one is amazing and shout out to Crux Climbing, who has been a remarkable partner for us. If you think about the hierarchy of needs for a human being, Sam and Michael now have space. They’re not afraid. Their bodies aren’t betraying them. And they’ve been given venues to express themselves. That’s really what climbing represents the same as Sam finding his own sense of humor. It tells me he’s not in fight or flight mode. He’s not freaked out. He’s got the emotional space to learn and grow. I think that’s true for Michael too and I think that’s the goal for all of our community members: put them in a place where they can learn and grow, so they can become the best version of themselves. Every individual has their own ultimate capacity, but putting them in a position to maximize it that’s a dream. That’s a dream for any parent, in any situation, but especially this one.

Mike Carr (02:44): One of the things that amazed me was watching how they respond when they see others do something they weren’t excited about. Staff would ask, “Do you want to try this?” No, no, no. “Are you sure?” No, no, no or they’d just shake their heads. Then they’d sit and watch two or three of their buddies do it. And without any prompting, they’d stand up and go do it too, because the environment felt safe, they were seeing their friends do it and it’s just human nature “well, that looks kind of fun, let me try.”

And everyone is incredibly supportive. There’s no such thing as failure. You learn from your mistakes. Having that intentional, accepting environment, one that meets your son or daughter wherever their pace is that day or that week, is hugely important.

Now, something I think would help parents: if you go back three or four years Sam’s aged out of school now, he’s 23 what would you tell yourself back then, before he aged out, that might help parents still in that transition period?

Jon Hockenyos (04:03): At the time, I told myself I’d better get on my horse and figure something out. We were so fortunate to find you all. If I’d tried to imagine a program, I couldn’t have come up with everything J-13 became. I was preparing to go invent whatever was going to be the next chapter of Sam’s life, because I was certain nothing like it existed.

We tried partnering with a disability organization here in Austin with a large campus. We talked to them about a joint venture, about doing all kinds of things together. But it became clear we were trying to fit a square peg into a round hole. J13 creates the context for Sam to become the best version of himself and also to experience something like separation and independence from mom and dad. He’ll never be able to live unsupervised, but he lives in a community where people consider him a buddy, respect him and treat him as a valued member not as a disabled person. He’s given room to express himself in so many ways. That’s what anybody wants. And that’s what happens there. It’s as good as it gets, Mike. It really is.

Mike Carr (05:28): Michael comes home after a couple of nights at J13 and as a parent you might expect that big smile. Sometimes I get it. But more often lately, it’s more like: “I’m cool, Dad. I’m 36. I’m my own man. Don’t bug me. I’m okay.” Then he just goes and does his own thing. It’s like this is simply part of his life now.

I think we both dream, as parents of profoundly autistic kids, of the day our sons don’t want to come home, the day they’re actually having more fun with their buddies at the residence. You might get them home for a weekend, but by the end of it they’re ready and excited to go back to what they now call home. That’s exactly where we want to go.

Jon Hockenyos (06:37): I think we’re about half a step from there. I get that vibe from Sam now he’s cool when he walks in, but he’s happier most days when he’s at the respite facility.

Mike Carr (06:46): I wanted to ask you, Jon what’s the minimum set-up needed? Kay and I know parents who’ve tried to do this alone or with just one or two other couples. There seems to be a minimum critical mass needed for the staff redundancy and support to actually work. Do you have thoughts for parents looking at a program or even trying to start one themselves, what to watch for, what you’ve learned? You’ve started things Kay and I haven’t, so you’re a bit further down that road.

Jon Hockenyos (07:22): You actually hit it on the front end already, leadership is everything. You have to build an institutional and organizational culture and that starts at the very top. The executive director of J13 if you went to central casting, this is who you’d get: mission-driven, highly intelligent, deeply empathetic, passionate, charismatic. That’s what we got and it’s amazing. Then you build the structure around that leader so they have room to build a culture with what they inherently bring. At the end of the day, it’s about leadership first and then the people they bring in. That’s the secret sauce. Once that’s in place, you can figure out whether you want a smaller group home or a full campus, but job one is leadership and culture. That’s why this doesn’t really work with just one or two families.

Your instinct J13’s instinct to start with a day program was exactly right. And our collective decision to build the R2R transition program has real value now, both in preparing our community members for eventually living away from mom and dad and as a strong stepping stone in itself.

I’d say two things to any parent: one, learn from us everything we’ve done, we’ve said openly, we’re going to make mistakes, we’re going to keep going and we’re open source. Anything we’ve built, you’re welcome to copy or improve on. Two, understand that our people need long runways, a lot of time and consistency in the people around them.

Tell me, Mike, what’s the turnover rate been at J13?

Mike Carr (09:11): It’s pretty low under 10%. At one point it was zero, though I don’t think we can promise zero forever.

Jon Hockenyos (09:19): You won’t be able to claim that forever.

Mike Carr (09:21): That’s amazing to hear said back to me, honestly.

When we were trying to do this ourselves, with six or eight people, we’d lose over half of them every year, sometimes as high as 75%. Some of that was students moving on, but a lot of it was people not understanding what it meant to commit. Someone would call in at the last minute because a date they’d hoped for finally came through or friends invited them to a concert and they wouldn’t think twice about backing out, even though they’d committed a month or two earlier. It never connected for them that they had a responsibility to follow through and what that meant not just for us as parents, but for Michael and Sam.

At J13, we built a real call-out process Hayden and Jon helped design it using Sling, so caregivers can communicate and find someone to trade shifts with. If they can’t, there’s a backup person on call. And there’s even a backup for the backup, which sounds excessive, but it’s necessary. You need that culture and those systems in place so that as a parent, you’re not left wondering what’s going on if the primary caregiver is suddenly unavailable. We’re covered. That matters.

Jon Hockenyos (10:59): Absolutely. And what that really means is you need people who see this as more than a job.

Mike Carr (11:04): Yes. Exactly.

Jon Hockenyos (11:05): Full disclosure that means you have to pay people well. You don’t have to go overboard, but you have to pay well. You have to treat people well. And you have to infuse the idea that what they’re doing genuinely matters because it does.

Mike Carr (11:20): There are families we both know who committed to other programs, only to get kicked out later. Their whole plan A, B and C was that one program financially and emotionally, they were all in. And then, weeks or months in, it fell apart. There’s a real responsibility to keep these young men and women safe, but also to give them an environment where they can actually flourish not just during the day program, but on respite nights too. We’re not there yet with a full residential program, but hopefully that’s not too far off.

Jon Hockenyos (12:04): I think about this every day, Mike. I told my wife Rebecca this morning I’m champing at the bit to keep pushing with our friends at the legislature and in every other way, because nothing I work on matters more than this. Nothing is more satisfying than making progress for these families. And I know you feel the same. So at the end of the day, I feel a lot of hope. A whole lot of hope. I’m proud of what’s been accomplished so far. Thanks to you, Kay, Hayden and Johnna for dreaming this up and launching it the right way. I think one day we’ll all look back and say, “That was the best we could have done.”

Mike Carr (12:45): I think you’re right. Any last words for parents who aren’t as far along in this journey, maybe they’ve got a 17 or 18-year-old, still a few years left in school, profoundly autistic, maybe dealing with aggression and they know their child won’t ever be “mainstreamed”? What would you tell them?

Jon Hockenyos (13:17): I’d talk about feelings before actions, because everyone in this community feels some version of “my kid’s different, my kid will never do X, Y or Z.” You go through a process of recalibrating all of that. Where I’ve landed is: the standard of measurement for Sam is Sam. What’s Sam’s potential and how do we set him up to be the best version of himself?

Job one is getting his body right, so he’s not dealing with physical struggles underneath everything. I’ve learned that most bad behavior in young people, even adolescents has some physical root to it. For Sam, that’s often his OCD. If you ignore that when his body’s off, it becomes a real challenge.

Once you’ve addressed that, then you ask: how do I put him in a position to keep growing? People assume “profoundly autistic” is set in stone. He’ll likely always carry that diagnosis, but that doesn’t mean he can’t grow, change and move toward a life of real satisfaction. I see growth in both of my sons in their 20s all the time. I’ve seen enormous growth in Sam since he’s been part of J13. If you can see the possibility of that growth, you can see the possibility of hope.

Mike Carr (14:37): That’s great. If anyone watching wants to check us out or get in touch, go to j13.org that’s our nonprofit website. You’ll see plenty of pictures and there are forms you can fill out for more information about the program or just to say, “I’d like to talk to Jon or Mike some more.” You can also visit autismlabs.com, this podcast’s home and leave a comment. I read those regularly and I’m happy to connect you with Jon.

Neither of us is an attorney. Neither of us has a background in applied behavior analysis. We’re just two dads who’ve been on this road a while, so we’ve picked up some organic expertise. We’ve lived it. Sometimes that’s exactly the kind of help you need.

So thanks for watching. Come back next week and take care of your profoundly autistic kiddos and take care of yourselves too. Jon, thank you so much for being here with us at Autism Labs.

Jon Hockenyos (15:40): Appreciate it, Mike. It’s a pleasure.