Autism After 22: What Parents Must Do Now with Jon Hockenyos

What happens after individuals with profound autism age out of the school system?

In this episode of Autism Labs, Mike Carr sits down with Jon Hockenyos, a father and advocate navigating life with a profoundly autistic adult son. Together, they explore what truly drives growth, independence and quality of life in adulthood and why many traditional programs fall short.

Drawing from real-world experience, they discuss the importance of environment, leadership and culture in autism services. They also share practical insights on preparing for transition, avoiding common pitfalls and creating opportunities for continued development well beyond childhood.

Key themes include:

• Redefining independence in profound autism
• The impact of environment on behavior and learning
• Why staff consistency is critical
• Preparing early for life after 18 and 22
• Creating communities where individuals can thrive

This episode is essential listening for parents, caregivers and professionals seeking better outcomes for autistic adults.

Watch the Full Podcast here:

• Part 1: https://youtu.be/ImPfpktqfcQ?si=ll_nxoH2QeXlGP9W
• Part 2: https://youtu.be/e12UVMROLjg?si=wX6pFyF1V_bKXDA4

Autism Labs shares our family's experiences, our research, or the experiences or advice from our guests. Mike Carr is a parent, not a doctor, lawyer, or trained therapist, and nothing herein is medical, legal, or financial advice. Please talk with your own physician, attorney, therapist, or benefits specialist before making decisions for your son or daughter. Programs, laws, and funding rules change, and details recapped herein may be dated or inaccurate by the time you listen or view this.

Transcript

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Mike Carr (00:05):

Well, welcome back. Wanted to talk to you about the second part of our dad to dad conversation with Jon and his autistic son, profoundly autistic son, and Michael. So we'll continue the conversation from last week discussing just this journey and what we've both learned and aging out of the school system and how to get ready for independent living. So here we go. I mean, I think a lot of the parents that we both know and have participated in J13, I think we've now got 20 or so young men and young women in our program. And then of course all the parents as a result of that. But they've seen things that they never imagined their son or daughter could do. And for instance, you mentioned humor. There was a suspicion, right? He showed inkling to this, but it makes him a more real person. His real essence sort of shows through.

(00:53):

He's more fun to be around. He forms bonds with other guys and gals that naturally would be formed. But if you're in a very isolated environment or if you're in a group home environment that doesn't sort of encourage those interactions and provide those opportunities, they often don't happen. With Michael, we never though he would climb. I mean, he didn't even understand the concept of holding on. I mean, what in the world would he do climbing a wall? And they worked with him for months, right? But finally he started climbing a wall. And to see as a parent that he actually had that innate drive, that desire to succeed, and then he would go through physical challenges, things that are tough to where he can now get up a 60 foot wall without any assistance other than that belay rope around him for safety, that's pretty amazing.

(01:38):

And so are there any other experiences that you guys have had like that, that you'd want to share?

Jon Hockenyos (01:42):

Well, I think the climbing one is amazing and shout out to Crux Climbing, who has been

(01:47):

A remarkable partner for us. What it is, is it gives. If you think about kind of the hierarchy of needs of a human being, Sam and Michael now have space. They're not afraid. Their bodies aren't necessarily betraying them. And they've been given kind of venues to express themselves. And that really what we're talking about, climbing is a great example. Sam telling his form of humor is a great example, but what it tells me is he's not in fight or flight mode. He's not freaked out. He's got emotional space to learn and grow. And I think that's true for Michael too. And I think that's part of the goal for all of our community members is get everybody in the place where they can learn and they can grow. And that's what I mean by becoming the best version of themselves. I mean, every individual will have sort of their own ultimate capacity, but putting them in the position to maximize that, I mean, that's a dream.

(02:40):

That's a dream for any parent in any situation, particularly in this situation.

Mike Carr (02:44):

And one of the ways that I think to me was amazing to see that happen was how when they see others do something that they weren't that excited about, the staff would ask them, "Do you want to do this?" No, no, no, no, no. "Are you sure you want to do this?" No, no, no, no. Or even they couldn't say, no, no, no. They'd shake that head, right? And then they sit there and they watch two or three of their buddies do it. And then they stand up without any prompting. They go over the wall or whatever it is that you're having them do. And they want to do it too because they do have the environment's right. They feel safe. They're seeing their friends do it and it's sort of human nature. Well, that looks sort of fun. Let me give it a try.

(03:19):

And then everyone's of course very supportive. There's no such thing as failure. You learn from your mistakes. And so I think having that very intentional, accepting environment that encourages progress at whatever pace your son or daughter is ready to make that, and that changes by day in some cases or by week or what the activity is, is just hugely, hugely important. Now, one of the other things I think would be interesting to parents is if you go back three years, right? So Sam's aged out of school now, he's 23. But if you go back three years when he was 20, okay. So you've got a couple more years to go. What would you have told yourself three years ago or four years ago that might help parents that are in transition now and their son or daughter has not yet aged out of the school system?

Jon Hockenyos (04:03):

At the time, I told myself, I better get on my horse and move because we're going to have to figure something out.

(04:08):

And we were so fortunate to find you all. If I'd imagined a program, I couldn't have come up with everything that J-13 is. So I was preparing myself to go invent what was some version of what was going to be the next chapter in Sam's life because I was certain it didn't exist. We flirted with a group here in Austin that really is aimed more at people with different disabilities. And that was disappointing. We talked to them a lot three or four years ago. We talked to them about a joint venture. We talked to them about doing all kinds of things because they have a large campus-based facility here. And it became clear we were trying to fit the square peg in the round hole. J-13 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.

(04:58):

Because he'll never have the capacity to live unsupervised, but he lives in a community where he's with people who he considers his buddies. And he's with people who respect him and who treat him not as a disabled person, but as a valued member of the community. And he's given the opportunity to express himself in so many different ways. That's what anybody wants. And that's what happens. So it's as good as it gets, Mike. It really is.

Mike Carr (05:28):

Yeah. Michael will come home after a couple nights and days at J13. And as a parent, you might think, well, I want to see that big smile on his face. And sometimes I have that smile. But more often, the last couple of times he's come home, it's almost like, "I'm cool. I'm cool, dad. I'm 36. I'm my own man. Don't bug me. I'm okay." And then he just goes off and does his own thing. It's almost like this is part of his day. And we are all hopeful, I think, as parents. There are mixed emotions here. Any parent that's dropped off a son or a daughter at college knows what that's like. Your little baby now is now at school on their own and it is a bit gut wrenching. But as parents of profoundly autistic or kiddos with special developmental needs, I think we both dream of the day where a Sam or a Michael don't want to come home.

(06:18):

That they're actually having more fun at that residence with their buddies. And you may get them home for a weekend, but it's pretty clear at the end of that weekend that they're real happy and real juiced to go back to quote their home and not continue living with mom and dad. And that's obviously where we want to go.

Jon Hockenyos (06:37):

I think we're like half a step from there. I get that vibe from Sam now. I mean, he's cool when he walks in, but he's hippier most days when he's at the respite

Mike Carr (06:46):

Facility. I wanted to ask you, Jon, too, about what's the minimum set? Because Kay and I know parents that have tried to do this by themselves. We know parents that have formed with one other couple, right? Or maybe even two other couples, but there seems almost to be a minimum critical mass so that you can have the staff and the redundancy and the support. Do you have any thoughts or recommendations on that for parents that are looking at a program or if they can't find something, maybe even trying to start something on their own, what to watch out for? What have you guys learned? Because you certainly have started things that Kay and I have never started. So you actually are a little bit further along that path than we are.

Jon Hockenyos (07:22):

I Think actually you hit it out of the park right on the front end, which was the leadership is everything. You've got to build an institutional and organizational culture. And that starts at the absolute top. The executive director of J13, if you went to central casting, this is who you would get. A mission driven, highly intelligent, super emotionally connected, empathetic, passionate, charismatic young guy. That's what we got. It's amazing. Oh yeah. And then you build the structure around that leader or those leaders so that they then have the space to take what they inherently have and build a culture with it. Because at the end of the day, all this is about first leadership and then the people they bring in. That's the secret sauce. Once you've done that, then you could start figuring about whether you want to do a smaller group home, whether you want to build a campus.

(08:08):

I mean, kind of where you want to go with it. But job one is leadership and then the development of culture. And that's why it doesn't really work with one or two families.

(08:19):

And your insight, you're the J13's insight to start with the day program, bang on. And then our collective insight to create the R2R program, which is the transition, has value now. But what it really does is prepare our community members for the day when they're more or less living away from mom and dad also turns out to be a really, really good baby. So I guess the thing that I would say is one, we'd say to any parent, learn from us. I mean, everything we've ever done, we've always said, look, we're going to go out. We're going to make some mistakes. We're going to keep going. We're open source. Anything we're doing, you are more than welcome to either emulate or improve on or what have you. And two, understand that our people really do need long runways, which means they need a lot of time and they need consistency in the people they're interacting with.

(09:07):

Tell me what the turnover rate of J13 has been, Mike.

Mike Carr (09:11):

Well, it's pretty darn low, right? We know it's under 10%. At one point was zero. I don't think we can promote zero.

Jon Hockenyos (09:19):

You won't blame that forever.

Mike Carr (09:21):

That's amazing.

(09:22):

When we were trying to do this ourselves, right? And we had six, eight people, we'd lose over half of them every year. In some cases, it was high as 75%. But part of that was we were having students. But part of that also was the lack of awareness of what calling in at the last minute because they had a date that they've been hoping to get for a couple months and finally the guy or the gal called them to go out on a date. Or their friends called them at the last minute to go to a concert and they had no misgivings about just saying, "Oh, well, I want to go to the concert or I want to go on this date." Even though that they committed a month or two ahead of time, because we had all made plans to do something that was a big deal.

(10:00):

And it never connected for them that they had a responsibility to sort of stick to what they committed to. And then the implications that that might have on not just us as parents, but on the Michaels and on the Sams. And so at J13, we have a call out process. Hayden and Jon have helped us design that so that if somebody is going to be out, we use sling and they can chat with one another and try to get somebody else that's on the team to fill in and trade slots. They can't, there's somebody back up. So there's always that backup person that is on call that if someone can't come in and they're sick at the last month, who knows what. And there's even a backup for backup, which sounds ridiculous, but it's needed. You really need to have that culture and that institution in place and the processes in place so that as a parent, you don't have to worry about, "Hey, I'm not around.

(10:50):

I don't necessarily know what's going on. If the primary caretaker or the primary colleague is unavailable, we're covered." I think that's important.

Jon Hockenyos (10:59):

Absolutely. And what it really means is you need people who see this as more than the job.

Mike Carr (11:04):

Yes. Yep. And

Jon Hockenyos (11:05):

Full disclosure, that means you got to pay pretty well. I mean, you don't have to be insane, but you got to pay pretty well. You got to treat people really well. And you've got to infuse. We talk about culture. You've got to infuse the idea that what you're doing is really important if you're

Mike Carr (11:18):

Working

Jon Hockenyos (11:19):

Because it is.

Mike Carr (11:20):

There are families that we both know that have committed to other programs only to get kicked out. And their whole dream was, "This is the program I want my son or daughter to be in. I've committed financially. I've committed emotionally." And then at the last minute or after a few weeks or months, not to be in that program. And that was sort of their plan A, their plan B and their plan C as a disaster. And so there is a responsibility to keep these guys and gals safe, but also to give them an environment where they can flourish. They can lead that joyful, fulfilled life, not just during the day program, but on those respite nights. And while we're not there yet, hopefully we'll have that residential program in the not too distant future.

Jon Hockenyos (12:04):

I think about this, Mike, literally every day. Telling Rebecca this morning, my wife, I'm champing at the bit to get after this, our friends at the legislature and in other ways, because there's nothing that I work on that matters more than this. And there's nothing more satisfying than making progress for these families. And I know you feel the same way. So I guess at the end of the day, what I would say is I feel a lot of hope.

Mike Carr (12:28):

Yeah. I

Jon Hockenyos (12:28):

Feel a whole lot of hope. I'm super pleased with what's been accomplished to date. And again, thanks to Mike and Kay and Hayden and Johnna for dreaming this up and launching the boat in the right way. And I think we will all, at some point, look back at this and go, "Man, this is the best we could have done."

Mike Carr (12:45):

I think you're right. Is there any last comment or two that you'd like to leave parents with that aren't as far along in the journey as you guys are or that we are? A word of advice or maybe it's something you've already mentioned, but you want to reiterate is that, hey, if you've got a 17 or 18 year old, so you've got a few years still in the school system, they're profoundly autistic, they have aggression or whatever the situation might be, but they can't live independently and they're never going to be 'mainstreamed, be sure and do this or be sure and think about that. What words of wisdom would you leave somebody with?

Jon Hockenyos (13:17):

Well, I think that rather than actions, I would talk about feelings because everybody in this community feels like, "Oh my God, my kid's different. Oh, my kid will never do X, Y, and Z and whatever." So you go through the process of recalibrating all that. And where I've come to say is the standard of measurement for Sam to some degree is Sam. What's Sam's potential? And how do we set him up to be the best version of himself? Well, job one is do everything you can to get his body right so that he doesn't have physical situations. Because one of the things I learned over the course of this is most bad behavior from young people and even adolescents has some kind of a physical or root to it. In Sam's case, it's OCDs. If you deny his OCDs when his body's off, that'll be a challenge.

(13:59):

Once you've gotten through that, then you say to yourself, "How do I figure out a way to put him in a position where he can continue to grow?" And that's the thing that also people think, "My son's profoundly autistic, profoundly on the autism spectrum. Okay, that's set in stone." Well, he'll always have probably that diagnosis, but that doesn't mean he doesn't grow and

Mike Carr (14:20):

Change

Jon Hockenyos (14:21):

And evolve and move toward a life of satisfaction. I see growth in both of my sons in their 20s all the time. I've seen an enormous amount of growth in Sam, even since he's been associated with J13. And if you can see the possibility of that, then you can see the possibility of hope.

Mike Carr (14:37):

Oh, that's great. So for anybody watching, if you want to check us out or get ahold of either one of us, you can go to j13.org, which is our nonprofit website. And take a look around and you'll see a lot of pictures. And there are various forms you can fill out for more information about the program. Or you can just make a note, "Hey, I'd like to talk to Jon or Mike some more." You can also, of course, go to autismlabs.com, this podcast, and leave a message or make a comment. I read those on a regular basis. I can certainly put you in touch with Jon. As Jon already mentioned, we're more than willing to help. We're more than willing to try to ask questions. We're not experts on everything. Neither one of us, for instance, are attorneys. Neither one of us have backgrounds in BCBA applied behavior, but we're both dads that have been on this journey for a while.

(15:20):

So we have some organic expertise, and we've sort of been there and lived it. And so sometimes that's the best kind of expertise and help that you might need. So thanks for watching. Please come back again next week and be sure and take care of your kiddos, your profoundly autistic kiddos, and of course yourself too. And Jon, thank you so much for being on this episode with us at Autism Labs. 

Jon Hockenyos (15:40):

Appreciate it, Mike. It's a pleasure.