Mike Carr highlights three key autism resources: Autism Labs, which shares effective strategies for individuals with autism; Jobs for Autism, a membership organization focused on meaningful employment opportunities; and John 13, a nonprofit in Austin that provides day programs for older teens and adults with severe autism. Carr emphasizes the importance of challenging the status quo to help individuals with autism realize their potential and engage in meaningful activities, encouraging inquiries and support through Jobs for Autism or John 13.
Building a Community for Parents of Kids with Profound Autism: Our Story
Let me tell you about life with our son. He’s 34 now, and he has profound autism. He can’t speak, deals with seizures, and still needs diapers at night. That’s just part of our daily reality. But here’s the thing – he’s an amazing young man who can do so much. Every day with him teaches us something new, and we’re always finding ways to make his life better.
Living this life has lit a fire under us to help other families going through the same thing. We’ve built this community for parents and caregivers who have kids or adults with profound autism and other developmental challenges. If you’re walking this road too, I want to tell you about some things we’ve put together that have really helped us – and might help you too.
Autism Labs: Where We Share What Works
When we were trying to figure out how to help our son live his best life, we tried everything under the sun – from the simplest gadgets to fancy new tech. But there wasn’t really a place where people shared what actually worked and what didn’t. So we started Autism Labs, a place where families like ours can learn from each other.
Let me give you an example. The P Guard – it’s this simple thing that helps prevent bathroom accidents. Anyone taking care of someone with special needs knows how important it is to keep them clean and comfortable without making them feel bad about it. This little tool has been a game-changer for us.
We’ve also gotten into some cool tech stuff we never thought we’d use. Like this smart lock we put on our son’s door. The caregivers can use their fingerprints to get in, and we can check who’s coming and going through our phones. It locks itself after a few minutes too, which gives us extra peace of mind. Being able to see who’s been by even when we’re not home – that’s huge for us.
These are just a couple of things we talk about at Autism Labs. Whether it’s little tricks for making life easier at home or the fancy tools our son uses, we’re here to share what’s worked for us, hoping it might work for you too.
Jobs for Autism: Finding Work That Works
Like any parents, we worry about what’s going to happen to our son as he gets older. What will he do? How will he stay busy and feel like he matters? We’ve found that one of the best things we can do is help him – and others like him – find jobs that actually work for them, with people who get it.
That’s why we started the Jobs for Autism Facebook group. It’s turned into this amazing space where employers who understand autism can post jobs. Places like Home Depot have really stepped up, giving meaningful work to folks with developmental disabilities. What started as a small program for employees who needed extra support has grown into something much bigger.
Through the group, parents can find employers who are willing to work with their kids’ needs – whether that’s special training, flexible hours, or just understanding that some days are harder than others. We’ve got everything from part-time gigs to full-time jobs to volunteer work. It’s been incredible watching this community grow and seeing how many companies want to give our kids a chance.
John 13: Building a Real Home for the Future
Here’s the thing that keeps us up at night: what happens when we’re not around anymore? Who’s going to take care of our son? What kind of life will he have? That’s why we started working on John 13 – our idea for creating homes (not facilities) for adults with autism and other disabilities.
But John 13 isn’t just about giving people a place to live – it’s about helping them be part of the world. We want to create real homes, not those cold institutional places. At John 13, people live in spaces that let them be as independent as they can while still getting the 24/7 care they need.
The cool thing is, our residents aren’t just sitting around – they’re out there doing stuff. We just ran this summer camp where everyone learned basic job skills like mopping and washing windows. It was amazing to see how proud they were when they mastered something new.
What really blew us away at camp was watching how everyone helped each other out. We had some of the more independent folks working with those who needed more help, and man, the bonds they formed were something else. It was like watching siblings look out for each other. It really showed us that people can do so much more than we sometimes think they can.
As we keep building John 13, we want to add more day programs and get the residential part going, so people can live their own lives while still getting the support they need. We want these to be warm, happy homes where everyone feels safe and capable of chasing their dreams.
Coming Together as a Community
Everything we’re doing – Autism Labs, @Jobs4Autism, John 13 – it’s all about building a network of support for families like ours. Having a kid with profound autism isn’t easy, but it’s taught us so much. We’re constantly amazed by how strong other families are who are going through the same stuff.
By sharing what we’ve learned and connecting with other parents, we hope to create a place where everyone can find real help and support. Together, we can make life better for our kids and help them live more independently.
If you want to check out any of this stuff, come visit Autism Labs, join us on the Jobs for Autism Facebook group, or see what’s happening at John 13. Just remember – you’re not in this alone. We can work together to help our kids reach their full potential.
You’re doing great, and your kid can do amazing things. Let’s figure it out together.
Transcript
Mike Carr (00:07):
This week I wanted to talk about a community that we’re building by parents for parents of those that are profoundly autistic, severely autistic, as well as others that have kiddos or adults that are challenged with multiple IDDs intellectual development disabilities. We know it’s tough. My wife and I have a 34-year-old son, profoundly autistic. He has seizures. He’s nonverbal. He still has to wear a diaper at night. He wets his bed almost every night. And this is an adult diaper, but he’s also an amazing kiddo, and I’m sure your son or daughter is phenomenal too. And so what I want to do today is share three different resources that you may want to consider that we offer folks. So first of all, I want to talk about Autism Labs. And we started Autism Labs trying to share what we found that works and doesn’t work. So very simple, grungy things like P Guard for our son.
(01:12):
When he sits on the toilet and goes to the bathroom, the urine doesn’t leak out and create a stinky mess all the way to high tech stuff, right? So one of the things that we’ve recently installed and we’re just blown away about how cool it is, is a smart lock on a door. So as his colleagues come and go, all they have to do is use their thumb fingerprint and they can gain access and leave. We have an app that lets us track who’s showing up when if they leave. It has an auto walk feature. So after a minute or two or three, whatever you set it at, it locks itself so you don’t have to worry about that. If we’re out of town, we can tell who’s there and make sure the door’s locked and all that kind of stuff. And there’s a lot of other technology we talk about and we talk about things that haven’t worked too we’ll show you his environment, the home environment we set up for him, all the different devices he uses and all that kind of stuff.
(02:06):
So that’s what Autism Labs is all about right now. The second resource is the Jobs for Autism Facebook group, and that’s where folks post jobs. Employers might post jobs for people that require more support. Home Depot’s been phenomenal this 20 years ago we toured the country and we looked at programs on the West Coast. We program on the East coast, the Midwest, and we found a program up in Maryland where Home Depot, 20 some years ago, was providing employment and support for folks that had behavior problems. And today they are still doing it even in a bigger way. And there are other employers like this. So jobs for Autisms where employers can post jobs where if you’re looking for something for your son or daughter, even someone that has lots of supportive needs, you maybe can go and ask questions. It’s about a community where I moderate it and hopefully can answer your questions or guide you in the right direction.
(03:00):
And this will evolve over time as we get other parents involved and hopefully they want to lead the charge in their respective location around the country, around the world. And then the third resource is John 13, which I mentioned. It is amazing. What we’re ultimately going to try to do is have a full residential program, 24 by 7, 365 days a year. But as you get older and you say, well, what’s going to happen to my son or daughter? They can’t live by themselves when I can’t take care of ’em. And so the idea here is we’re going to have a community. We’ve got trained folks, BCBAs, folks who’ve got advanced degrees and chosen this career as well as volunteers and others that have a calling to serve this community. And they have fun with them. And we’ve already seen this at Crux Climbing gyms. We just completed a summer camp.
(03:54):
It would blow you away, absolutely blow you away where we bring teens and adults in and we learn what they like to do from a job standpoint. It can be mopping, it can be washing windows, it can be clean cubbies in the future, it might be laundry. It might be more advanced skills for those that are inclined to do that. And we have folks there that are helping them through this. And while your son or daughter might need one-on-one support, what we’re finding is if we group someone that’s a little higher functioning with someone that’s lower functioning, it’s almost this sibling relationship. It’s phenomenal and the synergy and the fun, and you’ll get them to see things you never thought they would do because they’re with other folks that they sort of identify with. It’s truly exciting, joyous, and something that we want to continue.
(04:45):
And as we build the day program out, which is all we have right now, we then introduce the residential piece. We’re going to provide a home, a nice home, not a group home, a home that you would want to live in with a couple perhaps that lives there. And then colleagues that come in throughout the day, help ’em get up, help ’em get dressed if they need that, whatever support they need, and then take them out in the community. They’re not just sitting at a place all day, right? It’s getting out in the community and doing fun things or doing jobs that add value and where people can see them and interact with them. So that’s what John 13 is all about. So feel free to go to j thirteen.org or john thirteen.org for more information on John 13. Feel free to go to that Facebook group, jobs for Autism.
(05:36):
If you want more information on employment side of things, please come back to this place, autism Labs for videos on other things that hopefully we’ll be doing in the not too distant future. But as a parent, I want to let you know that I feel for you, I know this is hard, but you don’t have to be sad. You don’t have to just accept the status quo of your son or daughter, basically just living with you when they age out of the school system at 22. So now they’re just living with you and maybe where you’re at is they’re in the room most days playing video games on the computer, but at least they’re safe and at least you can be with them. That’s great. But they’re just so much more that they can do. And trust me, when you put them in situations like we have with our son who would not even understand how to climb a wall a few months ago, didn’t want to do it.
(06:30):
I mean, we actually had people pushing his feet up on the wall to climb and I saw a video last week of him climbing by himself up the wall. I would bet all the money in the world, he would never have done that. So you just don’t know what potential, what things your son or daughter might want to do, might enjoy doing, might be able to do until you try some of the things that we’re trying@johnthirteen.org. So hope the journey goes well for you. Please reach out to me through Jobs for Autism or through John 13 if you have any questions and we’ll talk again soon.
