If you’re caring for a child or adult with autism, this episode is for you.
So many caregivers carry a quiet, constant weight—the emotional exhaustion, the loneliness, the pressure to always keep going without pause. If you’ve ever skipped your own doctor’s appointment, missed out on time with friends, or felt like taking a break wasn’t an option, you’re not alone.
In today’s episode of Autism, A New Perspective, host Kat Lee and Dr. Rachelle Sheely, President of RDIconnect®, speak directly to the needs of caretakers like you.
This episode explores:
- The guilt and self-sacrifice many parents feel—and how to shift that mindset
- How to ask for (and accept) help in a way that actually works
- The importance of trusted support, even if it’s just someone kind giving you a few hours
- Why caring for yourself is one of the best ways to care for your child
- And how to recognize the signs that you may still be in a state of quiet crisis
This episode is a reminder that you matter. Not just as a caregiver, but as a whole person—with needs, dreams, and a right to rest and joy.
We hope that when you finish listening to this episode, you’ll feel seen, supported, and encouraged to take the time you need—not just for your sake, but for the good of everyone you love.
“Everything is going to be better for that person you’re caring for if you’re caring for yourself.” – Kat Lee
Find the support you need.
Discover more resources to support parents and caregivers of autistic children at: https://www.rdiconnect.com/autism-resources/
Full Transcript
Kat Lee: Welcome back to Autism, A New Perspective, the podcast show where we help you understand what is going on in the mind of your child. And we encourage you that growth for your child is possible. I’m Kat Lee, and in this week’s podcast, I visited with Dr. Sheely about autism and the well-being of caretakers. Let’s listen in. I’m excited about today’s topic, but because my heart is just so thinking about caretakers, parents who may have young children who are very affected or parents of adults who are still in a high level of care for their children and making sure they’re taking care of themselves. You know, we know that caretakers of those of our loved ones who have dementia have a lot of need to take care of themselves, but I also want to talk to those caregivers that are taking care of children, whether young or adult, who have high needs.
I really get concerned that they don’t think about their well-being. What do you think?
Dr. Rachelle Sheely: I think it’s just spot on. And I know from experience, you know, having taken care of my own mother, who lived 104 wonderful years, I know what it means to have that kind of responsibility, because it’s not only the responsibility of ensuring someone’s safety or ensuring someone’s growth. It also has to do with finding meaning for that person.
So that person still feels valued, important, that they have something to give, that they have something to offer. And I don’t really care if that’s someone on level 1 or level 3 on the autism spectrum, or whether it’s a spouse, or in my case, where it’s a mother. We have to not only be thinking about ourselves, but we have to be thinking about what’s the result of the care we’re giving that person.
The other thing I wanted to say is that sometimes when we have care of someone who has a lot of needs, we want to quickly get through things and get them done. And the person doesn’t realize their own sense of agency. They now feel like whatever is going on is the result of someone else who has that agency.
And I think as much as we can, we have to think about the caregiver and the person who’s being taken care of.
Kat Lee: There’s so much there to talk about, even just basic things like making sure that you have a dental appointment, or you’re an annual exam, or whatever the case may be. I’ve known parents who are, I’ll say, skipping those things. That’s not really quite the right word, but they’re just so thinking about their child and all the responsibilities there that they honestly neglect themselves.
Do you know what I mean?
Dr. Rachelle Sheely: When we have things we need to do, sometimes we need the space to do those things. And having someone come in and spend time with our child or with our parent frees us up to do that. They may be things we enjoy.
And so the thought is, well, I really have this child that I care about, and the way I show that is I give up something that’s important to me, and I really don’t think that should ever happen. So what I’m saying is, how do you carve out this time? And how do you feel good about carving out that time?
Kat Lee: And of course, feeling good about whoever that’s going to be staying with your child. But you also reminded me of that feeling of loneliness that so many of my parents report that comes from either family members or friends or both, unfortunately, not really either recognizing or acknowledging, if that’s an okay word to use, that they are in a situation where they need that support. And I know you’ve seen that as well as I have.
I certainly hear my parents talk about it.
Dr. Rachelle Sheely: And finding the support is true. I wasn’t thinking about it when I was talking, but if you don’t have confidence in the person who’s coming in that they are going to be able to interact with your child in a way that is not destructive in any way, then you can’t have that person in your house. It’s not helping you.
And in fact, you’re going to be worried the whole time you’re out. So finding support groups and training those people to know what you expect when they’re with the child. This isn’t a person who you’re asking to come in and help your child grow.
It’s just a person you’re asking to come in, be kind, and give me time and feel good about the time you’re given.
Kat Lee: And that’s just knowing that’s going to be such a relief for parents. I love when you train us as consultants to think about with parents their healthy sense of entitlement. And one of the things, maybe there’s many things under that, that they are entitled to is their health and being able to take care of their health.
And as you said, not leaving things behind that they enjoyed to do or people behind that they enjoyed to see. So I love that you’re talking about that level of well-being because I don’t always know that my parents know they should feel entitled to that.
Dr. Rachelle Sheely: You know, Katherine, I was thinking about an adult that I saw at one time and he had a traumatic brain injury. And his wife was amazing. She got something like Volunteer of the Year Award and that kind of thing.
And I could see that she was really running herself ragged and that she had this job she’d given up. She wanted to be working. And so what she and I did, we thought about all of the organizations that she belonged to and how we could present to those organizations the way they could help her.
So I went and I made a presentation. The man wasn’t aggressive, so that wasn’t a problem. But I went and I talked to them and I said, quite frankly, she needs a break and she needs someone to come in and be with him.
You don’t have to have medical knowledge. There’s really nothing you have to do but give her a break so she can go out. And we actually found some volunteers and they became very creative.
One woman who volunteered came in in her own creative way, decided that the two of them would cook Chinese food together. I don’t know. I don’t know.
But she would do, people would do these things. They wanted to help. They knew the situation and they wanted to help, but they didn’t know what to do.
So sometimes we keep thinking the state needs to provide this, which it does. I’m all, but there may be groups of people who would like to help us and don’t know how to offer it. And we need to feel comfortable asking and asking for it in a way that might seem, I want to go get my nails done.
So well, you know, I think it’s okay to say that I want to go get my nails done. And first of all, I do have a dental appointment and I do, I do have a yearly checkup. I have these things.
Those are the easy things to ask for. The harder things are I want to have lunch with a friend. I want to get my hair done.
I want to do my nails.
Kat Lee: Yes. But I love that you’re bringing up that people will want to help if they know that there’s a need. And sometimes it has to work both ways, recognizing that someone has a need, but also telling someone that there’s a need.
But I think that can go back to that feeling of not being entitled to that, that I must be there. I must be the one no matter what the cost to me. And what I like to try to communicate is everything’s going to be better for that person you’re caring for if you’re caring for yourself.
So one of the best things you can do for that person, whoever it is, is to make sure you’re taking care of yourself. It can be very hard to kind of lift the fog and see that.
Dr. Rachelle Sheely: You know, Katherine, as a mother of a young adult on the spectrum, I was wondering how you’ve navigated that.
Kat Lee: Oh, well, I would never want to be a hypocrite on these topics, as you know, and it’s very up and down for me. You know, definitely at times neglecting myself more than others. But what I have tried to do is pass down that knowledge to others that that’s not a healthy approach and also learn from my own experiences, as we know is so important, to inform myself now of what I need to be doing.
And then I’m doing it for myself, which is good because I got to take care of myself, but for my family as well. I think that became very powerful to me at some point that I’ve got to do that. That’s part of a responsibility is taking care of yourself.
And as you said, even to having friends, because you need to have outside voices or else all the voices are inside, right? And you end up being the one talking to yourself. And I don’t mean that as humorous, you know, you need to have other voices in your life.
So but but it’s, you know, certainly and we both know, as you said. People who have their parents having things and end up as caregivers and they’ve never been on that journey. So you don’t know who you’re going to be helping through that journey.
At what point? Before we go, one thing that struck me while you were talking about the parents is that topic we’ve talked about so much, which is crisis or re-crisis. And I do wonder if some of the things that we’re talking about are at times a symbol of the caregiver being in crisis, but not recognizing it.
And as we both know, when people come to us, it doesn’t necessarily mean that they have a little one. They can come to us in crisis many years later, as you and Dr. Gutstein have told us. Maybe this is a sign of still being in some kind of crisis when parents aren’t taking care of themselves.
What do you think?
Dr. Rachelle Sheely: I think it’s very valid to say I’m really struggling right now and I need to talk in a therapeutic way to someone who understands my situation and can give me direction. And yes, I feel like that is, I feel that’s really important.
Kat Lee: Well, as you know, one of the big things that drew me to RDI all those years ago was the parent-centered program. You were focused on helping parents become guides, no matter how old their child, and of course, on the sweet children. But I appreciate your focus on the parents that we could talk about some of the struggles they go into today and the wonderful work you and Dr. Gutstein continue to do.
Dr. Rachelle Sheely: You know, Katherine, thank you for that, but I have to say the most important thing I’m taking away today is your comfort in discussing things honestly. And when I asked you the question, I felt that your response to me was probably something that everyone could relate to. As a parent of adult children, I understand that.
And I appreciate what you bring to the table when we’re having these interviews and when we’re having our conversations, so thank you for that.
Kat Lee: Thank you. You’re welcome. And thank you for joining us for Autism, a New Perspective, the podcast show where we help you understand what is going on in the mind of your child, and we always encourage you that growth for your child is possible.
I’m Kat Lee. See you next time.
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