Last week we talked about the challenge of finding good autism respite care for somebody patient and steady and willing to show up for your kid. This week I want to talk about what I honestly think is the harder part of keeping them.
When you finally find someone who gets it: who’s kind and calm and doesn’t flinch when things get hard, that person is not just helping your child. They’re helping your whole family breathe. Maybe even sleep again. So the question can’t just be “how do I hire someone?” The real question is: How do I make this work long-term for them and for us?
I’ve been doing this for a long time with my son Michael. I’ve made a lot of mistakes. Here’s what I’ve figured out.
Key Points:
- Retaining autism respite care depends on respect, structure, and fair pay.
- Clear routines and behavior guides reduce caregiver stress and turnover.
- Caregivers should be treated as skilled professionals, not babysitters.
- Strong support, feedback, and growth opportunities keep care sustainable.
Three Things That Have to Be in Place First
I’ve thought about this a lot, and I keep coming back to three things that if they’re missing, nothing else really works no matter how hard you try or how much you like each other.
- Pillar One – Respect
- Pillar Two – Predictability
- Pillar Three – Pay
I know “pay” might feel uncomfortable to list alongside the other two, but I’m going to be straight with you. I think leaving it out would be dishonest. All three matter. And I’ll get into all of them below.
1. Stop Calling It Babysitting – Because It Isn’t
The people who care for our kids with profound autism are not babysitters. I need you to really hear that. What they do on any given day might include communication support, behavior prevention, personal care, community outings, safety monitoring, transportation, helping with emotional regulation, physical activity and yeah, sometimes real crisis management. That is not babysitting. That is skilled, demanding, meaningful work.
“In a lot of cases, these helpers end up almost like extended family. They eat meals with you. They spend long days with your child. They see your kid at their best and their absolute worst.”
So treat them accordingly. Give them clear expectations. Hold them accountable, yes, but support them too. Let them know they matter. Not in some over-the-top way, just honestly. Because they do matter. A lot.
And protect them from burnout. Don’t drop them into a brutal shift before they’re ready. Don’t leave them alone too fast with behaviors that could get dangerous. Don’t pile everything on one person. And please don’t assume that because someone genuinely cares about your kid, they can take on unlimited stress. We as parents can’t do that either and we love our kids more than anyone. Love helps. But love by itself is not a plan. It doesn’t replace training, or backup, or rest.
2. Write the Schedule. Write the Playbook. Don’t Skip This.
Here’s something I’ve noticed over the years. Most helpers don’t quit because the work is too hard. They quit because the work feels chaotic. Unpredictable. Scary. And I get it walking into a house with no clear plan and a kid who might have a really bad day is a lot to handle alone.
So give them a framework. A written or visual daily schedule makes a big difference. Show what a typical day looks like, what choices your son or daughter can make, what activities they actually enjoy and how to mix the harder stuff with the stuff they like. Laundry before basketball. Speech practice before the walk outside. Maybe community outings work best after lunch but not before. The schedule doesn’t have to be totally rigid but it tells your helper there is a plan. And it tells your kid what’s coming next, which matters a lot.
Then write a behavior playbook. Just one or two pages. The questions every new caregiver is silently wondering about but maybe afraid to ask:
What belongs in a behavior playbook for autism respite care
- How does your child communicate?
- What are the early signs that something’s wrong?
- What usually triggers a hard moment?
- What actually helps calm things down?
- What do you do during a meltdown?
- What should you never, ever do?
- What does joy look like? Fear? Pain?
- What does “I need a break” look like?
And don’t hide the hard stuff. I know that’s scary. But be honest about aggression, self-injury, elopement, toileting, sleep problems, sensory triggers or pica. Whatever applies to your child. Yes, it might scare off the wrong person. Good. That is exactly what’s supposed to happen. Way better to find out before you’ve spent weeks training someone than after everyone’s already worn down and frustrated. A playbook doesn’t make hard days disappear. But it gives your helper a map. And honestly? A map makes everything less scary.
3. Care About Their Future, Not Just Your Needs
One of the best ways I’ve found to keep great helpers in autism respite care is to genuinely invest in where they’re headed, not just what I need from them today. Many of the best caregivers I’ve known have been students or aspiring professionals: future therapists, teachers, nurses, social workers, behavior analysts.
So I ask them: What are you working toward? Do you need practice hours? Could their time with Michael count toward supervised fieldwork for a BCBA certification? Would a letter of recommendation help them with graduate school applications? Could I help cover the cost of CPR training, AAC training or de-escalation courses that move their career forward?
“For the right person, this work isn’t just a job. It can become a critical milestone on their own life journey. They’re learning patience, humility and how to stay calm when things fall apart. Those are life-changing skills.”
I’ll be honest with myself here: I’m almost 70 years old and it has taken me this many years to get better at staying calm under pressure. So I try to have real empathy for a 20-something caregiver navigating that same challenge. When helpers feel they are growing as professionals and as people they are far more likely to stay.
4. Build Joy Into Every Week, Not Just Every Crisis
If every shift in your autism respite care arrangement feels like pure survival, people will wear down no matter how much they care. So I try to build something to look forward to into the rhythm of the week. A walk, a hike, a trip to the library, a drive for a favorite snack, a climbing gym, basketball, swimming, music in the park, a simple picnic, a volunteer activity or a household task that gives Michael a real sense of purpose and accomplishment.
My son Michael who is 36 loves to clean. He loves to sweep, pick things up and take out the trash. That sense of accomplishment is real and it matters. We try to weave those moments throughout the day rather than saving all the “good stuff” for the end of a hard shift.
Something else we’ve seen work beautifully is pairing helpers together. One caregiver alone with one high-support individual can feel isolating. Two helpers alongside two individuals feels safer, more social, more flexible and genuinely more fun. There’s backup if something goes wrong, camaraderie between colleagues, and another person who truly understands what the work requires. Helpers need community, too. They need moments when the day feels less like a private struggle and more like a shared adventure.
5. Pay Fairly, Pay on Time and Be Reliable
Invaluable help should not be treated as low-value work. I think teachers and caregivers are among the most underpaid professionals in this country. and the people spending their days with our kids deserve better. I know many families are stretched. I know Medicaid waiver rates and respite funding often fall short. But as much as possible, pay fairly, pay on time and never make someone chase you for their paycheck.
If your state offers consumer-directed or self-directed Medicaid waiver options, I strongly encourage you to learn how they work. These programs often allow families to act as the employer and use state funds to hire and manage their own support staff. And when the official hourly rate isn’t enough, there are ways to supplement a training stipend, holiday bonuses, mileage reimbursement, covering meals and activity fees during outings, a small bonus after a genuinely difficult week or guaranteeing a minimum number of hours so the person can count on that income.
“A helper who feels respected financially is more likely to build their life around your son or daughter and your family. A helper who feels underpaid or taken for granted is eventually going to leave even if they love your child.”
6. Celebrate the Micro-Wins – Because That’s Where Progress Lives
In profound autism, progress is almost always measured in inches, not miles. A good shift in autism respite care is not one where my child acts perfectly – that is simply not the goal. A good shift is one where everyone stays safe. Where Michael communicated one need. Where he tolerated a transition a little better than last week. Where he walked into the grocery store for three whole minutes without a meltdown. Where he recovered from that meltdown faster. Where the helper noticed the warning signs before things escalated.
So I try to celebrate those moments out loud and specifically. Not with fake cheerleading, but with honest, specific recognition. Saying things like: “You gave him time to process and that made all the difference.” Or “You noticed he was getting overwhelmed before it became a meltdown, that is a skill.” Helpers need to know that you see the work, you understand the skill involved, and you recognize that the goal is safety, connection, growth and dignity not perfection.
7. Don’t Just Encourage Feedback, Plan for It
This one might be the most important of all and it’s the one families are most likely to skip when things are going reasonably well. I try to build regular debriefs into the rhythm of the work, not just when something goes wrong. At the end of a shift, a few simple questions go a long way. What went well today? What was hard? Did anything surprise you? What helped? What made things worse? What would make this easier for you?
After a very hard shift, I try to debrief without blame. The goal is not to interrogate, it’s to learn. My caregivers need to feel safe telling me the truth. If they are afraid to share that something went badly, I lose the chance to fix it and I lose the chance to strengthen the relationship.
Over time, these conversations build a stronger team. They help caregivers grow, they help Michael get better support, and they help me stop carrying everything alone. I have a bench of caregivers now and my job is to grow and nurture that bench so they can serve my son, each other and our family better together.
The Hard Truth and the Hopeful Part
We are in a caregiver workforce crisis. Families everywhere are struggling to find and keep good autism respite care. So we have to think differently. We are not just hiring a sitter. We are building a support team and a strong bench around someone we love.
Great helpers stay when they feel safe, trained, respected, fairly paid, emotionally connected to the progress and able to experience some joy in the work. They leave when the job feels chaotic, lonely, underpaid or impossible.
Our job as parents is not just to find help; it’s to make helping sustainable. And when you do this well, something beautiful can happen. The right helper doesn’t just give you a break. They become a trusted friend to your child, open doors to the community and remind you that you were never meant to do this alone.
If you have any questions email me: mike@autismlabs.com
If you’re interested in joining our private Facebook community for parents and caregivers seeking residential options, guidance and peer supports for profoundly autistic adults or adults with complex needs – Click here!
Transcription:
Mike Carr (00:04):
Welcome back to Autism Labs. In the last episode last week we talked about one of the biggest challenges that we as parents face, and that’s how to find the great help we need for our severely autistic son or daughter. This week, I would argue we’re going to talk about something that’s even harder. Oh my gosh. And that’s how do you keep them? Because when you finally find someone who’s patient and kind and steady and teachable and willing to do the hard work, that person is just incredibly valuable. They’re not just helping your child. They’re helping your whole family survive and breathe and maybe even begin to thrive again. So the question’s not just, how do I hire someone? The better question is, how do I make this work in a very sustainable manner for them and for our family? I think it comes down to three pillars.
(00:52):
Respect, predictability. And I hate to say it, but I think the third pillar truly is pay. Let’s start with respect. They’re not babysitters, so don’t treat them that way. If someone’s caring for your profoundly autistic son or daughter, they are not just babysitting. This work can involve communication support, behavior prevention, personal care, community outing, safety awareness, transportation, emotional regulation, physical activity, and yes, sometimes even crisis management. Folks, this is not babysitting. That is skill, meaningful, demanding work. That’s what this really is. So treat your helpers like the professional partners they are or the professional partners you’re helping them become through very careful, very mindful and intentional coaching. In many cases, these helpers, these colleagues, these caretakers become almost like extended family. They eat meals with you. They spend long days with your child. They will see your child at their best, their worst, and everywhere in between.
(01:49):
That means they need clear expectations. They need accountability. They need support. And yes, they need love. Now, not the mushy or inappropriate love, but in the sense they need to know they matter because boy, they really do. They also need protection from burnout. Don’t throw them into heroic shifts before they’re ready. Don’t leave them alone too soon with high risk behaviors. Don’t expect one person to carry the whole plan forward. And don’t assume that because they care deeply, they can absorb unlimited stress. Clearly, we as moms and dads can’t, nor can they. Now, love helps, but love does not replace training, backup, rest and a workable plan. So give them a schedule and a behavior playbook. This is sort of number two. Give them a schedule and a behavior playbook. Many helpers don’t burn out simply because the work is hard. They burn out because the work feels unpredictable, chaotic, or scary.
(02:47):
So one of the best things you can do is give them a clear framework. That might include a written or visual schedule for the day. It should show what usually happens, what choices your son or daughter can make, what activities are preferred, and how to balance harder tasks with the more rewarding ones. For example, maybe laundry, yuck, comes before basketball. Yay. Maybe speech practice or therapy comes before a walk outside. Maybe a community outing works best after lunch but not before. The schedule should not be rigid, but it should give your helper confidence that there is a plan and your son or daughter too so they know what’s fixing to happen. Just as important, create a simple behavioral playbook. This can be one or two pages and it might explain, how’s your child communicate? What are the early signs of distress? What are the common triggers?
(03:36):
What helps calm things down? What usually makes things worse? What should they do during a meltdown? What should they never, ever do? What does joy and fun look like? What does fear look like? What does pain look like? What does I need a break look like? And please don’t hide the hard stuff from colleagues, from caretakers. Be honest about aggression and self-injury and elopement and toileting and sleep issues and sensory triggers or anything else that may come up. Yeah, we may scare away the wrong person, but that’s okay. It’s much better to know that before you invest weeks or months in training someone that everyone’s going to feel frustrated because that person maybe just isn’t right or they’re frightened or they’re burned out. You want to sort of get that on the table right up front. So a good playbook doesn’t make the hard moments disappear, but it gives your helper a map and a map builds confidence.
(04:32):
Now number three, help them grow toward their own goals. One of the best ways to keep great helpers is to care about their future, not just your own needs. So if you hire students or if you hire an aspiring therapist or a future teacher, nurse, social worker, maybe a behavior analyst, even medical professionals, or want to be medical professionals. Ask them what are they working towards. Do they need internship hours? Do they need experience for graduate school? Could their time with your child count toward a practicum, a class project or supervised field work if they’re working for like their BCBA? Would a letter of recommendation help them with CPR, first aid, seizure training, AAC training, or deescalation training help move them forward to where they want to go. When you can, help them connect this work to their calling because this is not just a job for them.
(05:23):
For the right person, it can become a critical milestone on their own life journey. They’re learning patience. They’re learning humility. They’re learning how to communicate without relying only on words. They’re learning how to stay calm when things are hard. This is tough for me. I mean, I’m very bad at this. I mean, I’m almost 70 years old and it’s taken me this many years to get better at this. So just imagine what a 20 something year old’s going to be going through. These are all life changing skills. And when helpers feel they’re growing, they’re much more likely to stay. Number four, make the days meaningful as fun as possible. This is easy to overlook. If every shift feels like survival, people will eventually wear down. So build in the joy. That does not mean every day has to be magical. It won’t be. Some days the goal’s going to end up simply being keep everyone safe and let’s just get through it.
(06:18):
But whenever possible, create something to look forward to. A walk, a hike, a trip to the library, a drive to get a favorite snack, a climbing gym, basketball, swimming, music in the park, a simple picnic, a visit with another family, a volunteer activity, even a household task that gives your son or daughter a sense of purpose. Our son, Michael, 36 years old, loves to clean. He likes to sweep. He likes to pick things up. He likes to pick things in the trash. It gives him, we think, a sense of accomplishment. So find those household tasks and inject them throughout the day to create that joy, that sense of accomplishment. One of the best things we’ve seen is pairing helpers and families together. One helper with one high support in these individual can certainly feel isolated, but two helpers with two individuals can feel safer, more social, more flexible, and more fun.
(07:05):
There’s backup if something goes wrong. There’s camaraderie. There’s another person who understands the work and that really matters. Helpers need community too. We cannot forget that folks. They need moments when the day feels less like a private struggle and more like a shared adventure. Enough set on that. Now let’s talk about pay. Number five, pay as well as you can and be reliable. Invaluable help should not be treated as low value work. I think teachers and teachers age are some of the most underpaid folks and careers in this country. And man, think about the folks, the gals, the guys that are working with your kiddo every day. This is not low value work. I know many families are stretched. I know the funding systems are complicated. The Medicaid waiver rates or respite rates may not be enough, but as much as possible, pay fairly, pay on time and don’t make people chase you for their paycheck.
(07:55):
If your state offers consumer directed services or self-directed Medicaid waiver options, learn how they work. These programs often allow you to act as the employer and use state funds to hire and manage support staff. And if the official hourly rate is too low, you may need to supplement when you can. That might mean a training stipend. Holiday bonus, mileage reimbursement, covering the cost of meals during outings, paying for all activity fees, giving a small bonus after a difficult week, or guaranteeing a minimum number of hours so the person can count on the income on a consistent basis. Predictability matters. A helper who feels respected financially is more likely to build their life around the work, around your son or daughter and around your family. A helper who feels underpaid, uncertain, or take it for granted is eventually going to leave. Even if they love your child.
(08:48):
Number six, celebrate the wins, even the micro wins. A good shift is not one where your child acts perfectly. This is not the goal. A good shift may be one where everyone stayed safe or your child communicated just one need or they tolerated a transition a little better than last week or they walked into the grocery store for three whole minutes without having a meltdown or they recovered from that meltdown faster or the helper notice the warning signs before things escalated. With profound autism, all know progress is often measured in inches not miles. So celebrate the inches and be specific. Say things like, “You handled that transition beautifully or you gave him time and that made all the difference.” Or you notice he was getting a bit overwhelmed before it became a meltdown. You stayed calm and he felt that. You helped her succeed today.
(09:40):
This kind of recognition matters. It’s not fake praise. It’s not over the top cheerleading. It’s just honest, specific appreciation you noticed and you’re letting your colleague, the caretaker, know that you noticed. Helpers need to know that you see the skill involved, the work involved in what they are doing and what they’re putting out there on the table. They need to know the goal is not perfection. The goal is safety, connection, growth, and dignity. And number seven, don’t just encourage feedback. Plan for it. And boy is this important. Finally, you got to build that feedback into the rhythm of the work. Don’t wait until something goes wrong. Debrief regularly, like at the end of every shift. Just ask simple questions. What went well today? What was hard? Did you notice any triggers? Did anything surprise you? What helped? What made things worse? What should we try differently next time?
(10:35):
What support or training would make this easier for you? And when there’s been a very hard shift, debrief without any blame. The goal is not to interrogate. The goal is to learn. Your helper, your caretaker should feel safe and telling you the truth. If they’re scared to tell you something went badly, you will lose the chance to fix it. You’ll lose the chance to build that relationship. Over time, these conversations will build a stronger team. They will help your helpers and team grow. They help your child get better support and they help you stop carrying everything alone. Now you have this bench of caretakers. You need to grow them. You need to nurture them so that they can work better together and serve you, your family, and your child better. So the bigger picture. The hard truth is that we are in a caregiver workforce crisis and this is not just your problem or our family’s problem.
(11:27):
Families everywhere are struggling to find and keep good health. So we have to think differently. We are not just hiring a sitter. We are building a support team, a strong bench around someone we love. Great helpers stay when they feel safe, trained, respected, fairly paid, emotionally connected to the progress and able to experience some joy and some fun in the work. They leave when the job feels chaotic, lonely, underpaid, unsupported, or impossible. So our job as parents is not just to find help. It’s to make helping sustainable. And I know this can feel overwhelming, but here’s the hopeful part. When you do this well, something beautiful can happen. The right helper doesn’t just give you a break. They become a trusted friend to your child. They may open doors to the community. They may see abilities others miss. They may bring fresh energy into the home.
(12:27):
They may help your son or daughter experience more of the world and they may remind you that you were never meant to do this alone. So start small. Create the schedule. Write the playbook. Say thank you more than once. Ask for feedback. Pay what you can. Build in the joy and the fun. Protect the people who are helping you because keeping great help is hard, but it is possible. And when you build the right bench, it can change not only your child’s life, but yours as well in amazing and truly magical ways. I hope you have a wonderful week and please come back next week for another episode of Autism Labs. See ya.
