When Nothing Exists for Your Kid
I’m Mike Carr, and my 35-year-old son changed everything about how I see support groups for autistic adults. He’s nonverbal, has seizures, pica behavior, and drinks so much water it messes with his seizure meds. Just yesterday he had a seizure – probably from diluting his medication again.
We searched everywhere for support groups for autistic adults that could handle his level of need. What we found? Programs for high-functioning folks, but nothing for our guy. So we built our own.
Key Points:
- No programs for our nonverbal autistic son? We built one.
- John13.org serves the adults most others turn away.
- Real inclusion means rock climbing, laughter, and connection.
- Weekend respite gives parents the break they desperately need.
Creating John13.org Out of Desperation
When your kid needs something that doesn’t exist, you figure it out fast. That’s how john13.org started here in Austin. Right now we’ve got 14 campers in the summer program, and they’re not sitting around a table all day.
We take them rock climbing. Half these guys have never climbed before and they were terrified. But our staff knows how to get them started, and suddenly they’re up there trying something they never thought possible. We hit trampoline parks where they’re bouncing and laughing.
Here’s what gets me every time – watching them interact with each other. Even the nonverbal ones communicate and connect. You rarely see that because they’re usually isolated.
What Actually Works
The magic isn’t complicated, but it’s not easy either. You need a staff with heart, people who genuinely care, not just collect paychecks. Some have special ed backgrounds, others have siblings with disabilities. What matters is they respect these adults.
You plan for everything. Meltdowns, behavioral issues, medication problems – we’ve got protocols ready. Every outing gets planned ahead of time because you can’t wing it with this population.
Most importantly, you get them into the community. When we’re out at climbing gyms or parks, regular people see joy and laughter. That changes how they think about severe autism.
The Respite Care Game-Changer
Parents need real breaks. Not an hour here and there – real breaks. We do weekend respite where parents drop off Friday afternoon and pick up Monday morning. Our staff already knows these folks, so parents can actually relax.
My wife and I are taking our first vacation to Europe in years next month. Our son will be in respite care, and I’m not worried because these people know his routines, his triggers, & what makes him happy.
Serving the Ones Nobody Else Will
Here’s the truth most support groups for autistic adults won’t tell you – they don’t want the hard cases. Nonverbal, behavioral issues, multiple disabilities? “Sorry, not a good fit.”
That’s exactly who we serve. The adult’s other programs turn away because they’re “too difficult.” These people aren’t broken – they just need folks who aren’t afraid to put in the work.
Getting Connected
If you’re in Austin, take a look at john13.org. We’ve got videos on the site and on Instagram so you can see what we’re up to.
Not in Austin? No problem just shoot me an email at mike@john13.org. I usually get back the same day. I might be able to help you find something nearby, or even talk through how to get your own program going. Sometimes, it just helps to connect with someone who really gets it.
The Real Deal
Creating support groups for autistic adults who everyone else gives up on has been challenging. But here’s what I’ve learned – these people are human beings who deserve to be part of their local communities.
When you give them a real shot and remind them they belong in this world, amazing things can happen. Not just for them, but for the whole family. That’s what thriving can look like, even with a severely autistic adult child.
If you’ve been searching for support groups for autistic adults and keep coming up short, maybe that’s your sign to start one. It’s hard, no doubt. But seeing your kid climb that rock wall for the first time? That moment makes every struggle worth it.
Transcript:
Mike Carr (00:05):
Welcome back to Autism Labs. This week we’re going to talk about thriving with a severely autistic child. So as some of you know, we have a 35-year-old son. He is in the low end of the spectrum, nonverbal as seizures had one yesterday. Pica behavior has some physical limitations, although not too severe. Loves to drink water to an excessive amount, which I think one of the reasons he had a seizure yesterday is he drank so much water, diluted his meds, and a variety of other problems. So how do you thrive, whether that’s your child or whether your child has a different set of situations or circumstances? Here’s what we’ve learned. Here’s what I think you guys are going to find exciting and interesting. Some of it’s pretty obvious, some of it’s not. So, first of all is you’ve got to find a community that your child excels in, and we couldn’t find one, so we created one.
(00:55):
It’s called John13.org. It’s in Austin, Texas. We have summer camp going on today as I speak. We’ve got 12, 14 campers in the camp, and then a staff. And the thing about our camp is we’re in the community, and this is one of the things about thriving, right? You find environment, you find venues, and you’re going to see some videos on the screen. As I talk of some of these guys and gals doing some really cool, exciting things, whether it’s climbing at a crux gym, some of these folks have never climbed before. So it’s challenging, it’s scary. It’s like, oh, I don’t know if I want to do this. We’ve got a very caring, loving staff, well-trained, knows, knows how to get them started, or they go to trampoline park indoors, and they get to bounce up and down with somebody helping them and laughing and giggling.
(01:39):
And the fact that they’re all together and the fact that a lot of ’em are nonverbal is such a joy to watch because they interact like you or I would interact. And you normally don’t see that because by themselves a lot, right? Or they’re maybe at home, or maybe they go to a place where they’re just sitting around inside at a table all day and it’s really not that much fun. This is fun. This is exciting. This is high energy. And so to thrive as a parent of an autistic child, to give yourself a break, find an environment where your child is out in the community with other folks like them, but also with neurotypical people. And this is what we’ve seen at the climbing gym at the parks, A lot of places we go is folks want to find out what we’re doing. We’re obviously having a good time, a lot of smiles.
(02:24):
There’s a lot of laughter with those that are severely or profoundly autistic. You often don’t see that. That sense of joy and excitement and energy is often missing. And so that’s what we’ve tried to create. It’s not easy. The key for us has been defining a leader, an executive director of our nonprofit that really knows how to nurture the staff, bringing the right folks of different ages, most in the twenties, but older too. And they all have a calling, and some of them have educational training in this space. Some of them have a sibling that perhaps has been in this space. But you build this team where everyone respects one another, and most importantly, they respect the community members. And then every day that we have summer camp, another one of the leaders will find a venue in advance that we can go to. And there’s picnics outside.
(03:14):
There’s games outside. There’s things inside if it’s too hot. But it’s this idea that they’re not inside all day. They’re out doing things that are physical. They’re interacting with one another. They’re joshing, they’re choking. Yeah, there’s some behavior. And we have protocols in place in advance. In advance. This is another key to thriving is sort of being proactive and thinking, okay, if someone has a meltdown, if someone hits somebody else, if someone is off their meds, all these things, what do we do? Because we anticipate and try to in advance, train everyone to know. That’s sort of the secret sauce. And please take a look at john13.org for more information. You can go to our website, I think we have an Instagram page that we try to maintain, and we try to download some of the most recent video of the summer camps. And we also have a respite program, which is a whole nother thing for parents.
(04:05):
How do you thrive? How do you thrive as a parent? Well, you need a break, right? You need a break. And so part of that is we have trained staff that know our community members, and mom and dad can drop ’em off 4: 35 in the afternoon, and that can be a Friday afternoon. They can pick ’em up on a Monday morning, get the weekend off. We actually have a vacation coming up next month. We’re going to take an entire week off and our son’s going to be at respite care and we get to go to Europe, which is going to be really fun, really pretty cool. So it’s this idea that we have programs in place, we have training in place, we have protocols in place. If you’re in Austin, Texas, please reach out and contact us. If you’re not in Austin, Texas and you have any questions, please go to our website and leave us a note or just shoot me a note.
(04:50):
My email is mike@john13.org, JOHN, and then just one three .org about whatever problem challenge you’re facing, specifically for adults that are on the low end of the spectrum. That’s sort of our sweet spot. Those are the folks that aren’t served anywhere else, right? You’ll find programs that are pretty amazing for the higher functioning folks that are verbal and could be more independent. We try to serve the folks that aren’t as verbal, that aren’t as independent, that need more help, that need more assistance, have the behavior problems, have multiple IDDs. If that’s where you’re at and you’ve got a question or you’ve got a concern, or you just need some help or guidance, please shoot me a note and I try to get back to you in the same day, if not the same day, certainly within a day or two, and maybe we can have a conversation or at least an email exchange. Hope you have a great rest of your week. Talk to you again soon. Bye.
