Thriving with a Severely Autistic Child: Finding Real Support Groups

In this episode of Autism Labs, Mike Carr shares his journey raising a profoundly autistic, nonverbal son with complex needs. Lacking support, he and his wife founded John13.org, a nonprofit in Austin offering inclusive programs for adults with severe autism. Their summer program and respite care focus on joy, structure, and community integration, showing how thoughtful planning and support can help families thrive.

Chapters

• 0:00 Introduction & Our Son’s Story
• 0:55 Creating John13.org
• 1:20 Meaningful Community Activities
• 2:24 The Power of Inclusion
• 3:14 Building the Right Support Team
• 4:05 Respite Care for Parents

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.