Respite Care for Autism: What It’s Like When Your Son Ages Out of School

If you’re a parent of a profoundly autistic child, you already know the fear I’m talking about. It’s 2 a.m. though that creeps in. What happens to my kid when the school system is done with us and who’s going to give me a break when I need one? I sat down with my friend Jon Hockenyos, whose son Sam just turned 23 and recently went through this exact cliff, to talk dad to dad about aging out of the school system, the waiver list nightmare and how we both found our way to real respite care for autism the kind that actually gives you a night or two of peace instead of a night of worry. My son Michael is 36, so I’ve lived a version of this journey already and honestly, listening to Jon describe it brought a lot of it right back.

Key Points

• Respite care for autism isn’t a luxury, it’s often the only thing standing between a family and total burnout once a profoundly autistic child ages out of school.
• Aging out of the school system leaves most families with almost nothing. No program, no plan, no path forward.
• Waiver lists (like HCS in Texas) can take 20+ years, and even approval comes with confusing, inefficient rules that don’t guarantee a good life.
• The kind of respite care that actually works is built on relationships. A caregiver that your son and daughter already knows and trusts, not just a random overnight drop-off.

Why does “aging out” of school feel like falling off a cliff?

Jon put it better than I could: you hit adulthood, and it’s over. There’s no more IEP meeting, no more classroom, no more built-in structure your family has leaned on for years. For Sam, it wasn’t even public school that ended, it was Central Texas Autism Center, the therapy-based program that had basically been his daily life since childhood. When that ended, Jon and his wife Rebecca looked at each other and asked, “Now what?”

That’s the honest truth nobody tells you when your kid is little and you’re drowning in early intervention paperwork. Nobody warns you that the hardest part might come later, when the formal structure disappears and you’re standing there as the adult in the room with no roadmap. For families dealing with profound autism specifically not everybody on the spectrum, but the folks who need serious, close to one-on-one support this gap is even wider, because so few programs are built for that level of need.

Why is my autistic adult’s behavior getting worse?

This is one I get asked constantly, and Jon said something that stuck with me: behavior trumps everything in most organizations. They’ll work with your kid right up until behavior shows up, and then the door closes fast. Jon and Rebecca learned this early. Sam got kicked out of a special needs preschool because of behavioral issues.

But here’s what both of us have learned the hard way over decades of this: Behavior doesn’t come out of nowhere. In Sam’s case, a lot of it traces back to OCD symptoms being stifled or denied. Maybe it’s been things like an upset stomach, poor sleep, someone being unkind the day before or just not being able to say what’s wrong. If your son or daughter can’t verbally tell you “my stomach hurts” or “I’m scared about what happens next,” that frustration comes out as behavior instead. The programs that actually help are the ones willing to dig for the antecedent instead of just labeling a kid “difficult.”

What can you do when services for adults with autism just don’t exist?

Short answer: You build it yourself. That’s literally what happened with J13 (john13.org), the nonprofit Kay and I started here in Austin. Jon said something I think about a lot, if he and Rebecca hadn’t found J13, they’d have had to invent something themselves and it wouldn’t have worked nearly as well.

There genuinely isn’t a path laid out for adults with profound autism once they leave whatever structure raised them  school, therapy centers, day programs. The waiver system exists, technically, but it’s not designed to help people live full lives. Jon called it what it is: warehousing. The state’s version of success is often just “the person is somewhere safe,” not “the person is thriving.” That gap is exactly why families like ours end up building our own solutions.

How long does it really take to get approved for a Medicaid waiver?

Jon and Rebecca put Sam on the HCS waiver list in Texas when he was two years old. He got approved at 22. That’s not a typo: twenty years. And when the approval finally came, Jon described feeling like he was chasing a pot of gold that turned out to be full of bureaucracy and restrictions instead.

Before that mandate work Jon and Rebecca did on insurance reform, standard health insurance treated autism treatment like generic “mental health” coverage about 40 sessions a year at $50 an hour. That’s less than a week of ABA therapy. Families like ours end up privately paying enormous sums because the systems that are supposed to help simply aren’t built for what our kids actually need.

What is respite care for autism and why does it matter so much for profound autism?

Respite care for autism is exactly what it sounds like on paper, someone else steps in to care for your son or daughter for a night, a weekend, or a few hours, so you get a break. But if you’ve never lived it, that definition doesn’t capture what it actually means for a family in our situation. This isn’t dropping your kid at grandma’s respite. When your son or daughter is profoundly autistic, respite care has to be built around their specific triggers, their specific communication style, and caregivers who already know how to read them.

That’s the whole reason Kay and I started J13 with Jon and Rebecca. Good respite care for autism isn’t a service you buy off a shelf, it’s a relationship you build over months, sometimes years, with people who become part of your kid’s world. Done right, it’s not just a break for the parents. It’s the thing that lets your adult child build an actual life outside the four walls of your house. Friendships, routines, a sense of independence instead of just existing inside the family unit forever.

How do you prepare an autistic adult for their first night away from home?

This is the part of the conversation that actually gave me hope, and I think it will for you too. Sam’s first night at the J13 respite house was in Jon’s words: “a 10 out of 10.” Not because it was luck, but because it was intentional. Sam already knew the caregivers. He already knew some of the other community members. There was no cold drop into a strange place with strangers.

Jon said our guys need a long runway, and I couldn’t agree more. That first night, there was no phone call, no crisis. Two years and roughly 40 overnight stays later, still no call. Sam jokes around on the phone now. He’s developed this sense of humor that used to be latent and is now front and center. That’s what happens when the caregiving relationship is built slowly, with people who actually know your kid not handed off to strangers on day one.

What You’ll Learn

• Why the transition out of the school system is often harder than anything that came before it
• How to recognize that behavior is communication, not defiance
• What the Medicaid waiver process (like HCS in Texas) really looks like, wait times and all
• Why staff turnover and lack of familiarity sabotage residential placements
• How building trust gradually makes overnight respite care actually work
• Why self-directed waiver programs give families more control, but also more admin burden
• What questions to ask before touring any residential or day program for an autistic adult

Notable Quotes

• “The dirty little secret is behavior trumps everything in the vast majority of organizations.” -Jon Hockenyos (04:24)
• “You hit adulthood and it’s over. There’s nothing, particularly for people with profound autism.” -Jon Hockenyos (07:27)
• “We used to say we sent Sam to Harvard every year because what we were spending out of pocket.” -Jon Hockenyos (09:36)
• “There’s no thought under anything the state is doing about creating opportunities for people to live their best life. They’re just literally trying to figure out ways to warehouse people.” -Jon Hockenyos (10:57)
• “Sam’s first night away from home was a 10 out of 10.” -Jon Hockenyos (14:43)
• “Our guys need a long runway.” -Jon Hockenyos (15:59)
• “It just doesn’t come out of the blue. There’s something going on there.” -Mike Carr (06:07)
• “Here’s a bucket of money… we’re going to rely upon you to spend that money the way you want to, to deliver an outcome for your child.” -Mike Carr (12:59)

Resources & Links

• John13.org (J13) -The Austin-based nonprofit Mike and Kay Carr founded, offering day programs and residential/respite services for adults with profound autism and similar high-support needs.
• Central Texas Autism Center – The therapy-based program that served as Sam’s primary support through much of his childhood and adolescence.
• Texas HCS Waiver (Home and Community-Based Services) – The state Medicaid waiver program discussed in the episode; wait times can span decades depending on the state.
• State insurance mandates for autism treatment – Legislative advocacy work Jon and Rebecca have done to require insurers to cover autism treatment as a medical expense, not just generic mental health coverage.

Timestamped Outline

• 00:05 Introduction: a dad-to-dad conversation about profound autism and aging out of school
• 01:04 Jon introduces himself, his son Sam, and his background in economic policy
• 03:34 The moment a preschool said they couldn’t keep Sam any longer
• 06:35 What changed when Sam left the structured therapy program he’d been in for years
• 08:14 Touring residential programs and spotting red flags parents should know about
• 09:36 The 20-year wait for a Medicaid waiver, and what approval actually looked like
• 12:11 Why self-directed waiver programs shift the burden and the control to parents
• 14:31 Preparing Sam for his first night away from home
• 17:20 Why relationship-building with staff is the real foundation of successful respite care
• 19:09 Wrap-up and preview of next week’s continued conversation

FAQ

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Transcription:

Mike Carr (00:05): So welcome back everyone to another episode of Autism Labs. Today we’re going to have sort of a dad-to-dad conversation, talking to two dads who’ve got two sons, both of whom are profoundly autistic. We’ve both been on this journey independently of one another until fairly recently. Our son is much older than Jon’s, but both of our sons have aged out of the school system. And so that’s part of the excitement that parents go through. To be truly transparent, Jon and his wife and Kay and I have purchased a house together where we’re starting to provide more residential services, so that both of our boys can spend nights together, get used to living away from home. It’s staffed by our nonprofit here in Austin, Texas, called John13.org, which I’ve talked about before on other episodes. But let’s get into this episode. Jon, why don’t you introduce yourself and tell us anything you want to about who you are.

Jon Hockenyos (01:04): I’m Jon Hockenyos. Thanks, Mike. I’m an autism dad. My son, Sam, is 23 a little younger than Mike’s son. Professionally, I’m an economist by training. I’ve run a consulting firm doing public policy work and economic analysis for almost 40 years now. My wife, Rebecca, and I have been swimming in the waters of being parents of a child with profound autism, but also doing policy work to support that community. We’ve done a lot of work around insurance mandates at the state level for autism treatments, and helped found two or three organizations focused on providing services and community for people with autism. Like everybody else, we were focused on things for young kids when our kid was young, and on school-age things when he was school-age. Now that Sam’s an adult, we’re focused on what happens after you leave the school system, after you leave the formal structure. J13 is our response to a massive hole we’ve discovered in what’s available. It’s a journey that tracks the journey of our children’s lives.

Mike Carr (02:35): And

Jon Hockenyos (02:36): It’s one where, at the end of the day, you look around and ask who’s coming to solve the problem. The answer is not really anybody. So it falls to us to do that.

Mike Carr (02:45): One of the initiatives you mentioned that’s so important is addressing affordability pushing legislative action, because this is not an inexpensive journey. The amount of money required for lifelong care for a profoundly autistic son or daughter who needs one-on-one care can run into the millions of dollars. Anything any of us can do talking to legislators or affecting insurance policy is welcome. Jon, thank you and Rebecca for all your work there. But let’s get into the personal journey, because I think that’s what a lot of parents watching this, especially with a younger child, will be interested in. Was there a moment when someone told you they couldn’t keep Sam in their program any longer?

Jon Hockenyos (03:43): There were a couple of moments when Sam was young. Our older son had physical challenges at birth, so when Sam arrived, he seemed perfect. The doctor said he was one of the strongest little guys they’d seen. At 18 months, I could throw him a ball and he’d catch and throw it back. Then, within a short time, I’d throw him a ball and it would hit him in the face. He clearly had regressive autism. He was at a special needs preschool at one point, and we got a call from the teacher saying, “You have to come get him” because of behavior. That’s happened episodically in other contexts too. In his case, it typically tracks back to OCD that’s stifled or denied which I’d characterize as a physical situation. So at a young age, we learned Sam was on the spectrum, and pretty profoundly so. The dirty little secret is that behavior trumps everything in the vast majority of organizations. They’ll work with anybody as long as there’s no behavior. But when behavior shows up, the game changes.

Mike Carr (05:14): I think that’s something anyone with a severely autistic child gets used to. The extent, frequency, and severity of that behavior varies, and changes with age, puberty, environment changes, limited verbal capability, anxiety, not understanding what’s about to happen. That inability to communicate is really tough. We went through something similar and got asked to leave a large school district in a big Texas city and moved to a smaller community with a better program. Part of the problem was staff unwillingness to investigate the antecedent for the behavior. It doesn’t come out of the blue. There’s something going on. An upset tummy, something in the gut, an iPad taken away, someone being mean the day before, a bad night’s sleep. Identifying that is hard, and maybe even harder once they age out of school. Talk to the audience about what changed when Sam aged out.

Jon Hockenyos (06:35): It’s interesting, because Sam was only in public school briefly we recognized early it wasn’t a good fit. Public schools are designed for people within one standard deviation of the mean, and our guys don’t fit that profile. No disrespect to public schools, but it wasn’t a great fit. The real cliff for us was when the Central Texas Autism Center which became Sam’s daily activity for most of his childhood and adolescence, partly because of the insurance mandate work we’d done, came to an end. We looked at each other and said, “Now what?” That’s about when we met you guys and found J13, and realized that was the path forward. If we hadn’t found J13, we’d have had to invent something, and it wouldn’t have worked nearly as well. There is no path for people leaving that structure therapy center, public school, whatever it is. You hit adulthood, and it’s over. There’s nothing, particularly for people with profound autism. So here we are, out in the wild, trying to figure out what we can do.

Mike Carr (08:14): Right. I did an episode last week about residential programs around the country, using AI to research them. What it found and what it missed. Something parents listening may not have experienced yet: you have to go visit these places in person. You can find out what staff say online, or where a regulator issued a warning or refused approval. Some programs have survived for decades despite staffing that isn’t what they claim. But when you go on-site, especially off-hours a weekend or holiday and see what the group home is really like, what the residents are really doing, sometimes it’s not much more than glorified babysitting. That raises real concerns about whether your son or daughter will have a joyful life there. And then there’s funding the waiver list. We were both on it a long time. Is there anything that experience taught you that you’d want to share with parents about funding sources or arranging finances?

Jon Hockenyos (09:36): It taught me a lot. We worked to expand resources through the insurance mandate arguing autism treatments had to be considered medical expenses for insurance purposes. Before that, under my health insurance, Sam was entitled to about 40 sessions a year at $50 an hour of “mental health treatment” less than a week of ABA therapy. Huge mismatch. So that mandate helped somewhat. We were on the waiver waiting list for over 20 years, put Sam on at age two, approved between ages… he’s 23 now, approved around 22. I always imagined that when we finally got there, it would be amazing, because we used to joke we sent Sam to Harvard every year given what we spent out of pocket. We’re blessed to be able to do that, and I know that’s a huge motivation for both of us, because so many families in similar situations don’t have those resources. But I was waiting for the pot of gold at the end of the rainbow. Then we got approved for HCS in Texas the highest level and discovered all the restrictions and convolution around it. It’s wildly inefficient, honestly. Now I’m both angry and motivated, because there’s a better way to do this, and I have distinct thoughts on it. I’m not saying we’ll change the whole world, but I’m going to work hard to build an alternative path that doesn’t involve this bureaucratic, inefficient, underfunded system that amounts to warehousing. If the state’s goal is just “people are being warehoused,” that’s considered a win there’s no thought given to creating opportunities for people to live their best life. We have to be clear-eyed about what getting on a waiver actually means, and understand that for most people with an adult who’s profoundly on the spectrum, it won’t be the panacea we wish it would be. We as a community have to roll up our sleeves and improve both access to resources and how those resources can be used. That’s part of our coming mission.

Mike Carr (12:11): This probably differs state to state. We’re both in Texas, but we’ve talked to parents elsewhere with similar problems under different rules. I think we both feel the boots on the ground the social workers, state employees who come into our houses have the right priorities but are shackled by paperwork and bureaucracy. We have a self-administered program, so we get the money directly and hire support staff ourselves, which means payroll and timesheets a ridiculous administrative load. Then there are limited hours for therapies PT, speech, OT and limited respite hours. Jon, one thing we’ve talked about is how much more efficient it would be if the state trusted parents more, gave us a bucket of money, maybe less than the old way, and relied on us to spend it to deliver outcomes for our kids, based on what we uniquely know about them. That would remove a lot of restrictions on social workers without eliminating their role many have master’s degrees. Together we think there’s a much better solution, and we’re both going to keep working on that. But I want to shift to the current rules: we both private-pay a lot of this, and we both tried to prepare our kids for residential living gradually rather than dropping them cold into a new environment through J13, spending a night or two away first. What did you guys talk about before that first night away? What were your worries? How did you navigate that transition?

Jon Hockenyos (14:43): There’s a lot there. Sam’s first night away from home was a 10 out of 10. We didn’t expect that, but we were hopeful, because we’d already realized that’s why you and I talked about doing this part of the special sauce was that he’d be with people who knew him well and who he knew well.

Mike Carr (15:07): You bet.

Jon Hockenyos (15:08): For everybody, that’s one of the foundational elements of J13 community members know each other and the people caregiving with them intimately. That strong connection sets people up for success. It doesn’t mean there won’t be problems, but our guys need a long runway. By the time Sam went for that first respite night February, two years ago he was already connected to the caregivers, other community members, and J13 leadership. That first night, we got no call. Nothing, it was all great. Since then, Sam’s probably spent 40 nights over there, give or take. Not one call. He’s over there right now. We didn’t talk to him from Monday afternoon until last night, and he was joking around, having a great time.

Mike Carr (16:12): That’s great.

Jon Hockenyos (16:13): That’s one of the things that’s emerged. He’s always had a latent sense of humor. Now it’s front and center. It’s autism humor, but it’s his humor. He gets on the phone with Beck and me and just wants to tell jokes.

Mike Carr (16:28): That’s great. Jon, what you’re describing is a very intentional, mindful process not random, not based on luck. We’re both on the advisory board of J13, both parents, and other board members are parents of profoundly autistic kids or adults, or kids with other diagnoses like Down syndrome coupled with communication challenges that put them in a similar high-support category. Every one of them is unique. Having staff spend enough time with them through a day program, like Jon and I have both done with our sons, means they really get to know what sets them off, and the visible signs they’re getting upset, and how to intervene and calm them down. That sets up the whole path for success including that first night away. Jon, I know you guys took at least a week off, like we have, to travel out of the country without worrying about your kids.

Jon Hockenyos (17:52): No, not really it’s a testament to how intentional J13 has been. Two things: the leadership, including you and Hayden, Kay and Johnna, everybody, has created a culture where people who work at J13 see it as a calling. When you create an environment where people with that sense of mission want to be part of it, and you invest real time and energy in every community member as an individual and in staff training, you get incredible synergy. I’ve never seen it work quite like this anywhere else because it’s truly by us, for us, of us. Everybody in the equation is personally invested in how it turns out. My son isn’t merely satisfied to be there, he’s happy to be there. He’s becoming the best version of himself. That’s the dream.

Mike Carr (19:09): Hi guys I want to stop the episode here with Jon. We’re going to continue next week. I think you get a sense of the wisdom Jon’s bringing, having lived this journey, with his son who’s 23 and recently aged out of the school system, whereas ours is 36 much further removed from that process. Next week we’ll continue the conversation with Jon and everything he’s learned as another dad of a profoundly autistic son. Until then, take care of yourself, and of course take care of your autistic son or daughter too.