In this podcast episode, Mike Carr discusses the importance of finding caregivers in home care for autistic adults and kids who are motivated by helping others rather than just viewing their work as a job. He suggests that colleges, universities, churches, and communities with a giving culture are good places to find such individuals. He also emphasizes the importance of making the work fun and enjoyable in order to retain these individuals.
The Staffing Challenge in Autism Care: Lessons from Over 30 Years of Experience
My wife and I have been living a life that few people understand but too many families know all too well: the daily ups and downs of autism care. Our son was diagnosed when he was just a year old. Now he’s 34, and through everything we’ve been through, one problem just won’t go away—finding and keeping good help. Every family dealing with autism knows this struggle: how do you find someone you can trust to care for a person who can’t tell you about their day?
Finding the right people has completely shaped how we handle our son’s care, and boy, have we learned some tough lessons. We’ve made more mistakes than I can count, lost sleep over this stuff, and spent years figuring things out the hard way. But we’ve picked up three big lessons that might help you out: getting real about what to expect, knowing where to look for good help, and hanging onto great caregivers once you find them.
Getting Real: Trust and Dependability Come First
The first step in fixing this staffing mess is being honest about what really matters. We’re not talking about lowering your standards—it’s about finding that middle ground between what you’re hoping for and what’s actually out there. Over the years, we’ve learned that two things matter more than anything else: trust and dependability.
Trust Is Everything
Right from the start, we knew there was no wiggle room on trust. When someone’s taking care of your kid, especially one who can’t speak up if something’s wrong, trust isn’t just important—it’s everything. These caregivers do the most personal things—helping with showers, getting dressed, eating, watching for health problems—and that takes more than just knowing what to do. It takes understanding just how much we’re counting on them. We’ve had to leave our son with other people thousands of times, and we can’t afford to have any doubts. Our caregivers have to be people we trust completely.
You can’t compromise on trust. We’ve had people who seemed great on paper—maybe they clicked with our son or were super organized—but if we had even a tiny doubt about trusting them, it always ended badly. We needed to know they’d make the right call every single time, especially since our son couldn’t speak up for himself.
Showing Up Matters More Than You’d Think
The second lesson hit us like a ton of bricks: reliability is huge. When we started out, we worked with high school students. While many were amazing with our son, their scattered schedules caused more headaches than they solved. They’d run late, cancel last minute because of homework, or just not be mature enough for the job. Their intentions were good, but the chaos it created in our son’s routine was a total mess.
We figured out pretty quickly that while experience and flexibility looked good on paper, having someone who actually shows up when they say they will—every single time—and can keep our son’s routine steady was way more important. Once we got honest about our expectations, we realized that knowing our caregiver would be there was what let us actually sleep at night.
Where to Find the Right People: Our Most Effective Resources
Once we got clear on what really mattered—trust and dependability—we had to figure out where to find people who fit the bill. We’ve tried pretty much everything under the sun. Some things worked great, others were total flops, but we’ve picked up some useful tricks along the way.
High School Students: A Mixed Bag
Early on, we relied a lot on high school kids. They had tons of energy and genuinely enjoyed being with our son. But as he grew up and got bigger, we realized these teenagers just couldn’t handle the physical demands of caring for a grown man with autism. It didn’t take long to see they were burning out way too fast.
Churches and Community Groups: Finding Caring Adults
Churches and community groups turned out to be pretty solid places to look. These spots tend to attract people who actually want to help others, not just earn a paycheck. We found some incredible older adults—especially retirees—who truly wanted to make a difference. But we ran into one big snag: they couldn’t keep up physically. Some of these wonderful people just didn’t have the energy to match our son’s activity level. Despite their huge hearts, the physical demands were too much.
Colleges: Where We Struck Gold
By far, our best luck has been with universities. We specifically looked for graduate students studying special education, kinesiology, nursing, and speech therapy. These students were already learning about related fields and often needed real-world experience. Grad students, especially those in master’s programs, tended to take things more seriously than undergrads. Their knowledge and commitment to their fields made them perfect for what we needed.
We also built connections with professors and program heads who could point us toward promising students. Over time, these university connections became our go-to for finding skilled, motivated caregivers who knew their stuff.
The Climbing Gym: Our Surprise Winner
Sometimes the best help comes from the most unexpected places. For us, that was our local climbing gym in Austin. The climbing community turned out to be an amazing source of energetic, physically capable caregivers. Climbers are natural team players, they’ve got endless stamina, and they’re used to looking out for each other. These qualities made them surprisingly perfect for caring for our son. Their physical strength and can-do attitude meant they could handle whatever came their way.
Keeping Good People Around: Making It Work Long-Term
Finding good people is only half the battle—keeping them around is just as tough. Caregiving wears people out, and most places see tons of turnover, especially when people are paid by the hour with no real future in it. But we’ve figured out a few ways to keep staff motivated and sticking around.
Making the Work Enjoyable
We’ve learned that keeping the job fun makes a huge difference. We plan group activities, like hitting up the park or arcade, to keep things interesting for everyone. Plus, getting our son together with other folks in similar situations creates a real sense of community, not just for him, but for the caregivers too. These shared experiences help prevent burnout and build real connections among the staff.
Creating a Family Feel
Another thing that works is making caregivers feel like they’re part of our family. When people work with our son, we get them to stay for dinner. We try to make them feel at home, not just like they’re punching a clock. This small gesture goes a long way in helping them feel valued, which keeps them engaged and wanting to stick around.
Paying Better Than Most
Let’s face it—money talks. While budget constraints can make this tough, we’ve always made paying well a priority. The emotional and physical demands of caregiving deserve pay that reflects the hard work. We’ve found that offering more than the usual rate is key to keeping good people on board.
Starting a Nonprofit: Building Something Bigger
A few years ago, we took a big step and started a nonprofit focused on caring for people with profound autism. This let us build a team of caregivers who could support each other, share what they know, and avoid burning out. It’s created something that can last, and we’ve been able to offer cool experiences for our staff, like those climbing gym outings. This supportive environment has made it easier to keep good people and build a strong team.
Wrapping Up: Making It Work with Heart and Common Sense
The staffing challenge is something every autism family knows too well. Finding the right people is a long, frustrating journey, but it’s also crucial for making sure our loved ones have good lives. By being realistic about what we expect, focusing on trust and dependability, looking in unexpected places for staff, and creating an environment that supports caregivers, we’ve built something that works for our family.
If you’re dealing with this same struggle, remember that it’s not about finding the perfect caregiver—they don’t exist. It’s about finding people who click with your situation. Whether that’s through universities, community groups, or even your local climbing gym, there are solutions out there that can make all the difference. Focus on trust, dependability, and motivation, and you’ll build a caregiving team that sticks around.
Stay tuned for more real talk in our next video. We’re all in this together.
Transcript
Mike Carr (00:08):
So for this week’s Autism Labs video, I’m going to talk about what’s been our toughest problem, and I think it’s probably everybody’s toughest problem in this space, which is how to solve the staffing challenge, the people challenge. So our son’s 34 and he was diagnosed with autism at 12 months. So we’ve been working on this problem for 33 years, and we have tried probably just about everything I want to go over in this podcast. In this video, three things that I think you might find helpful. One is resetting expectations. The second one is where to find the folks. What have we found the best resources, the best places to go? And then how to keep them once you have them. So resetting expectations, but without settle. So one of the things that I think we’d all agree is you can’t compromise on is trust. You absolutely have to be able to trust the individual, the colleague, the staff with your son or daughter, especially if they can’t talk, if they can’t communicate what’s been going on.
(01:14):
The second one though, however we have settled on, and that’s been a bad decision and that’s reliability or consistency. So we’ve had folks over the years, high schoolers, let’s say in some cases musicians and artists that were just fantastic with our son. They enjoyed working with them. They had fun, he had fun with them, but they didn’t always show up on time. Even though you may feel desperate and that you have to compromise on that, we found that the disruption and the stress and the angst it causes isn’t worth it. So trust and reliability are the two that we just feel are super, super important. The third thing is motivation. And in here I think we have settled and I think it’s okay to settle a little bit. What we have found though is that folks that have a calling, they want to serve, they want to help, and they get charged from that, right?
(02:06):
They find joy from helping others. Man, if you can find somebody like that, they’re motivated for the right reason. It’s not just a job. They actually want to engage with your son or daughter. They actually want to see if they can bring something out of that person. We always are on the lookout for somebody like that. So where do you find folks like this? Where are the places to go? Problem we’ve had with high schoolers is as your son or daughter grows older and our son’s now 34, you can’t really have someone that’s 17 or 18 or 19 working with someone that’s 30, 40 years old, especially if they’ve got to take ’em to the bathroom and shower them and all that. It’s just the dynamic there doesn’t work very well. Churches though have been an interesting place to go to. Sometimes you’ll find older adults there that are caring and giving.
(02:52):
The biggest challenge we found there though is just energy level and endurance. Our son is very active. I’m not saying there aren’t older adults that don’t have high energy. There certainly are, but that has been a problem that we’ve run into with going to some of the churches or communities that we’re part of and trying to find folks that are older and more mature, but they’re not quite up to the endurance that’s required. Here’s a place that absolutely for us has worked out the best are colleges and universities where they have degreed programs that people have already made a conscious choice for a career and we’ve been more successful with grad students than undergrads. But some of the degrees that we’ve found very helpful is special education. If you’ve got somebody with a master’s or working on their master’s and they need some money, a great choice, they’re already sort of looking for opportunities to try out some of the things that they’re learning.
(03:52):
They’ve got training and skills that often benefit our son and the professors, the teachers themselves will help direct students that are more in tune with what you may be needing if you have a relationship with a school already or some teachers that could help funnel the right students to you. That has just been invaluable. So what are the degrees? Special ed, kinesiology, nursing in some cases, speech in some cases, recreation therapy or recreational oriented degrees. Another good one are communities where the culture is about giving. What do I mean by that? Well, one of the places that we found that’s just amazing is crux climbing gyms in Austin, Texas. Climbers as a community are used to helping one another. It’s part of the vibe and the expectation. If somebody’s climbing up the side of a mountain, somebody else has got to be either helping making sure that it’s safe and that they’ve got all their equipment.
(04:51):
Other communities like that, hiking, rafting. Also, a lot of these folks are younger and they have energy, right? They’re outdoors, they’re hiking, they’re rafting, so they have the energy level. Those folks have just been an invaluable resource for us. And then the last thing, the third point is how to keep ’em once you got ’em. And if you’ve got just your own kiddo and that’s all you’re worried about, which is where we were for many years, it’s hard to offer the career advancement and all the other things that they may be looking for. So what did we do? We tried to make it really fun. We tried to get them out of the house and make suggestions, and we had a golf cart for a while and they could drive the golf cart around to the parks and everything. Or maybe have a group activity where there’s maybe somebody else in the neighborhood that has someone similar and that they can get together and socialize and have your son and daughter socialize with someone else that’s maybe a little bit higher functioning.
(05:44):
In some cases, we’ve seen situations where fuera a profoundly autistic or severely autistic individual with someone else that’s maybe more verbal. It’s almost like a sibling relationship, and there’s a bond there that develops. That’s really cool and really exciting. And then for the colleagues, the staff, it’s also fun. They have somebody to talk to, they have somebody to commiserate with. That really is a great way we think, to keep folks excited and engaged and they don’t get burned out, start looking for a job elsewhere. We also try to create a family atmosphere. So if they’re here during the dinner shift, they’re always invited to dinner and we don’t charge ’em anything for that. We just want them to sit down at the table as if they were our son or daughter or just a member of the family with our son, and we have a nice meal just like you would.
(06:31):
And that’s a perk that we offer. But it’s just a way to make them feel part of something that’s different than just a normal job that they get paid for. And that’s it. With respect to pay, we do pay above average. Now, there’s often budgetary and financial constraints there if you don’t pay a little bit above minimum wage. It’s just tough even with people who have the right calling and mindset to get them to stay because they’re just not making enough money to live on. The biggest thing that I think that we’ve done besides what I’ve already talked about, and this is a heavy lift, is you form an organization. We formed a nonprofit. You bring in not just three or four, but half a dozen, a dozen or more folks. You have then a staff that you can offer career advancement, you can offer all kinds of training.
(07:20):
We get them out into the community and into very fun environments like Crux Climbing gym. It’s just a really fun, exciting place to have this kind of a community involved. It’s much better than sitting inside somebody’s house working puzzles all day long. Or we go to an arcade where they get to play games and then they get to go outside and have a picnic and all that. So our parks, right? So this idea that if you can associate yourself with a community or start an organization where there are lots of other like-minded individuals, it’s the best of all worlds and helps you maintain the right culture and everything else. So I hope this helped and we’ll continue talking to you with the next video. See you.
