Blame, Shame, and the Guilt Game

The Refrigerator Moms podcast relaunches with this first episode. Julianna Scott and Kelley Jensen dive deep into the pervasive issue of mom guilt that plagues autism parents. Drawing from their 20+ year friendship and experience raising autistic children, they debunk the harmful "Refrigerator Mother Theory" while offering practical strategies for managing guilt and prioritizing self-care. The duo shares personal stories, actionable advice, and evidence-based approaches to help parents move from self-blame to self-compassion. They emphasize the importance of taking care of yourself, setting boundaries, and making decisions based on your family's unique needs rather than outside pressure.

Key Takeaways

• Mom guilt is universal but particularly intense for autism parents - you're not alone
• The "Refrigerator Mother Theory" was debunked decades ago - autism is not caused by parenting
• Self-care isn't selfish - it's necessary for sustainable caregiving
• Don't make yourself indispensable - teach independence gradually
• Focus on your family's needs, not social media comparisons
• Early intervention and diagnosis provide long-term benefits for both child and family
• Seek reliable childcare and support systems - keep trying even when it's difficult
• Treat yourself with the same kindness you'd show a friend
• Avoid negative self-talk and punishment-based approaches

🔗 Learn More:
Website: refrigeratormoms.com
Instagram: https://www.instagram.com/refrigeratormoms/
LinkedIn: https://www.linkedin.com/company/refrigeratormoms
Facebook: https://www.facebook.com/refrigeratormoms/

Creators and Guests

Guest

Julianna Scott

Guest

Kelley Jensen

What is Refrigerator Moms?

Born from 20 years of friendship, during which they navigated the trenches of autism parenting and advocacy, the Refrigerator Moms is Kelley Jensen and Julianna Scott’s way of reaching out to parents waging the same battles they were.  Their purpose with this podcast is to clear the fog, silence the noise, and find a path through neurodivergence for parents that are stuck between bad choices. They tackle parenting topics such as mom guilt, tantrums, pathological demand avoidance, siblings, medication, comorbidities, social media, and much more. 

[Kelley] (0:09 - 1:07)
So, Juliana, we met over 20 years ago, many, many, many moons ago in a, my gym class, it was for all, it was not any kind of a special needs class, and there were all abilities in the class, doing gymnastics and little play games, and I looked at you, and you looked at me, your child was off in the corner, refused to participate in anything, and my child just said the word pizza over and over and over, and it sort of was a moment where our hearts met as much as our minds, and it was a very natural friendship that has gone on for many, many years. It has many iterations, a lot of fun, a lot of heartache, a lot of calls in distress that ended up in being doubled over in laughter, no matter how bad the day, you could always find a way to make me laugh.

[Juliana] (1:08 - 1:32)
For sure, that was something when we recognized each other at that my gym class, we immediately also recognized that we both had a sense of humor about the whole thing. Maintaining that sense of humor through some highs and lows was really important, and also having somebody there who is going through it.

[Kelley] (1:33 - 2:32)
Absolutely. That's 20 years later, and life has gone in all kinds of crazy directions. I am helming a new clinic, developing a website, and in your genius editing hat, you were in my office editing my website, and a woman knocked on the door, came in and introduced herself, and she had a daughter that was visiting the clinic and had gone off to college.

Very brilliant young girl that had a total breakdown in college and had to come home, ended up with a late diagnosis of autism, and the mother was devastated, racked with guilt, a deer in the headlights, didn't know where to begin. And so we sat with her, we talked to her for at least an hour, and she left, and you said, I think you need to do something about that. And I said, I think I'm not doing that without you.

[Juliana] (2:33 - 2:57)
I know, I said, does this happen all day long? And you're like, yes. And I said, okay, that's not sustainable, but maybe there's some way we can help other moms going through this.

And we thought about different ideas, a support group, something like that. But then we thought, you know, hey, everybody's got a podcast. You know, no, actually.

[Kelley] (2:58 - 3:11)
We thought about how we could reach people, because one of the challenges of autism is that it's, everyone's all over the world, right? I mean, I get calls from people all over the world, it's not feasible for them to come to see us.

[Juliana] (3:11 - 3:45)
And we even thought about, you know, doing like, some kind of support group for parents who were coming into the clinic. But then we know from experience, how hard it is to carve out that time for yourself, like get in the car, you know, maybe drive a half an hour, sit there for an hour, and then drive home, and you've left your kid and all those things. It's causing more problems than it's solving.

And so this is a way where you can listen when you can. And also, we're providing information on our website, read it when you can. And this is just a lot more accessible.

[Kelley] (3:45 - 4:06)
And we kind of arrived at that whole midnight Google search engine, where you are up, wondering what you should do, researching something new to try. And in that moment, what you decide is fiction, and what you decide is worth giving a shot. And we have over the years bounced many, many ideas.

[Juliana] (4:06 - 5:08)
Many. But when we were going through it, we didn't have social media. I know this is going to date us.

You know, we're not that old. But we didn't have the added pressure or the added like, you know, bubble silo effect that social media has created. Because, you know, the hardest thing we had is I know I would, you know, send you messages, I think we didn't even have text, I would email you later and just say, Oh, I was in a waiting room with somebody and they were telling me about dolphin therapy.

And I'm just like, I know. And I'm just like, are enzymes or something like that. And then chelation.

And I said, I just want to read my people magazine and do my own research later. So but now with social media, you don't know who you're talking to. Like, are they experts?

Everyone seems to be an expert. Everyone has really strident opinions. And, you know, it may seem hypocritical that we're doing that.

But we're really not. We really want to encourage people to do your own research and give you a step.

[Kelley] (5:08 - 5:09)
This is your starting point.

[Juliana] (5:09 - 5:10)
Start here.

[Kelley] (5:10 - 5:13)
It's sourced. Yes, the bibliography, read it, read our opinion.

[Juliana] (5:13 - 5:55)
And what you're what you're holding, for those of you who are listening is a what we call a refrigerator paper. But it's like our version of a white paper, we have, you know, done the research on chosen topics. But also, we want to emphasize that, regardless, you need to make the decision.

Don't let somebody else tell you what to do. Don't let us tell you, we're not going to tell you, you should do this because we did it. You know, if we are saying something, it worked for us, right?

You need to consider your family, your family's dynamic, your resources, your location, like all, you know, your philosophy, all of these things.

[Kelley] (5:55 - 7:16)
And the other thing that we didn't like about some of the things that we saw on social media, was that, well, first of all, it's always so tailored to one point of view, and any other voice is silenced. Right? I don't, you know, I don't like that, because you need a wide variety of opinions and ideas when you are dealing with such a complicated topic.

And the other thing I didn't like was that everybody seems to be talking from only one experience, there's no citation, they'll tell you that it's not a behavioral issue, it's a nervous system disability, and then they will not have any citation or any concrete evidence of why they're making this crazy outlandish position. So I wanted a resource, a real bibliography, old school bibliography, that is, might not be the final world, but it's certainly something that is researchable. And then the other thing I didn't like on social media that I know you this was a thorn in your side as well is that people that are still in the middle of it are telling you what to do, right?

How do they know? Like, you've got a five year old, and you're a social media influencer on autism. Well, what does that look like when your child is 20?

You don't know yet, because you're still in the middle of it. So that while that's great for camaraderie, maybe a big sister, someone that has been there, lived through it, and has come out the other side has some sage advice for you.

[Juliana] (7:17 - 7:23)
Yeah. And I think that that's really true. I can't imagine taking advice from me.

[Kelley] (7:24 - 7:27)
When I was two hours asleep, right?

[Juliana] (7:27 - 8:50)
Or when my child was like, you know, in severe distress with big tantrums and everything, like, I didn't know exactly what to do. I certainly wasn't going to be in the business of telling other people what to do. Now, of course, we now have the benefit of some hindsight.

And we have made some mistakes, our neurotypical sibling, our neurotypical kids will tell us as siblings. And they do in upcoming episodes of, you know, what we did wrong. And we have the benefit of that hindsight.

And yeah, I consider us to be like big sisters. I wasn't ever a big sister. I'm a little sister.

So now I get to be a big sister. And also as a mentor, like I know, I've had people, you know, being connected with me with through a professional, like I've had someone reach out like, hey, you know, I know somebody, she is a few years ahead of you in this process, it might be nice for you guys to connect. And I've made one of my dearest friends that way.

And also, I've served as a mentor of similar sorts to other women, and we've become friends. And, and some, I've become friends with some, it was just, you know, a few phone calls of just like, hey, hang in there. But, you know, I think it's really important to have that, that perspective of somebody who is a little further down the road on this journey.

[Kelley] (8:51 - 9:01)
So we went back and forth as to style and what we wanted to present, how we wanted to present this information. Why do we come up with the name, Refrigerator Moms?

[Juliana] (9:01 - 10:11)
Well, I'm going to give my husband credit. I was brainstorming, we were brainstorming, and he came up with Refrigerator Moms because it kind of became a joke in our family. So it goes back to the Refrigerator Mother Theory.

And I'm going to refer to our paper to tell you what that theory is. And so a little background on the Refrigerator Mother Theory. In 1944, Bruno Bettelheim, the University of Chicago's foremost director of the Orthogenic School for Troubled Children, commented that the autistic students of the school could largely benefit from a parentectomy.

I know, he went on to publish a book, and then it cemented the popular theory at the time that autism was a defect of parenting, especially in light of the seeming lack of a biomedical explanation. So he popularized this Refrigerator Mother Theory. It was first coined in 1943 by Leo Kanner, who described a mother so cold and unfeeling toward her child that the child retreated into autism.

So it really is putting the blame squarely on the mom.

[Kelley] (10:11 - 10:19)
As we come back to that poor woman that knocked on my office door, racked with guilt anyway, and it's all her fault. Right.

[Juliana] (10:19 - 10:56)
Can you imagine being told, well, yeah, it's your fault. You're a cold mother. You didn't give enough hugs.

And so, you know, I am famously in my house, not the most, you know, touchy-feely affectionate mother, partly because my children don't really enjoy that. So I'm not going to take full blame. But like, if I ever said something like, you know, well, I'm not your friend, I'm your mother or something like that, they'd be like, oh, you know, Refrigerator Mom.

You know, and they because my kids are pretty early on knew this wacky theory. And so they would often, you know, teasingly call me Refrigerator Mom.

[Kelley] (10:57 - 11:17)
And I just love the way it was a giant middle finger, if you will, to the idea that any of this could be mom's fault. And the idea of just how tough you have to be, just you have to have cold, hard truths and cold, hard information, conversations almost on a daily basis, right?

[Juliana] (11:18 - 11:47)
Well, and talk about a fundamental misunderstanding of mothers of autistic kids. I mean, we are fiercely loving. And, you know, we'll really do anything for our kids.

And it hurts, honestly, to be told that, you know, at one point, the finger pointed directly at us as as this and it's just like, and obviously, as we know, now, it is, you know, it is nature, not nurture.

[Kelley] (11:48 - 11:55)
And calling ourselves the Refrigerator Moms is the irreverent take on that horrible slant.

[Juliana] (11:55 - 12:17)
You know, and it also really points out this, you know, mom guilt issue. You know, it's just like that it is fundamentally preying on, you know, like exploiting that horrible feeling that, you know, all moms feel, but moms of autistic kids really, you know, internalize.

[Kelley] (12:17 - 12:58)
And not only is it guilt, you've got enough worry anyway, because it's worrisome. You've got reason to worry. Legitimate reason to worry.

You don't need guilt on top of it, which is why we structured the papers with research and ideas and what we do in situations. We also have a to do list, things that we think can help you in the short term, the intermediate, the long term and things that we think you should never do. All the papers are broken up that way.

And we because we find that we love a good list. We got a list to do list and love ideas. And so this is our concrete way of giving you ideas because more than anything, when you have an autistic child, you want ideas for how to help them.

[Juliana] (12:59 - 13:42)
So on this topic of mom guilt, like let's talk about some situations about I mean, mom guilt, we all know what it is. Yes. So we don't have to define it.

But let's let's throw out a couple. What would we do situations and we have these in our refrigerator paper. So it's our version of a white paper, like we said, well researched, you know, white paper, but we're calling it refrigerator paper.

So one, what would we do that we pose and answer ourselves is, you know, if we're offered a ticket to the hottest show in town, and we know it will disrupt our children's routine, this is something routinely happens. And the mom guilt kicks in. Oh, should I should I do this for myself?

Should I leave my kid? What would you do?

[Kelley] (13:42 - 14:11)
Absolutely, I would go. This question comes up in a concert or date night with your husband. When the child is having some behavior, because they don't want you to leave.

What do you do? You go, you go. And you know, maybe you bring the child back a little treat.

Just you know, maybe I in our house, I would always schedule McDonald's on a date night. So yeah, they want you to go. Yes.

So then it was a big deal because I was leaving.

[Juliana] (14:11 - 14:11)
Yeah.

[Kelley] (14:12 - 14:27)
You know, and these things become routine. And you've got maybe one setback, but then a lot of jumping forward if you have recharged your battery, especially if you're having some time with your spouse. And you set the expectation that mom has a life too.

[Juliana] (14:27 - 14:37)
And not only does mom have a life, I mean, she might have to you don't want to make yourself indispensable habit if you want them to get used to the idea that you might not be there every second of every day.

[Kelley] (14:38 - 14:51)
Yeah. And one of the issues that we have with some of these social media forays is that it requires total dependence on mom. Right.

And that's not good. It's not sustainable.

[Juliana] (14:51 - 15:00)
It's not sustainable. You have to have a life. Sometimes it's going to a doctor's appointment on your own.

Sometimes it's meeting friends. You know, both are really important.

[Kelley] (15:00 - 15:11)
Sometimes it's something horrible, like you have breast cancer. Right. And you might eat.

These things are horrible, which you have to sometimes plan for the worst, hope for the best.

[Juliana] (15:12 - 15:14)
Yes. So go to that concert because.

[Kelley] (15:14 - 15:17)
Go to that concert. Have dinner with your husband. Right.

[Juliana] (15:17 - 15:17)
Right.

[Kelley] (15:18 - 15:24)
So you're invited to a family celebration. Yeah. But that's just too overwhelming for your autistic child.

But you would like to go.

[Juliana] (15:25 - 16:26)
Yeah. Well, I think there's definitely this definitely has come up. And honestly, well, I think you should just go.

I mean, you're unless you don't want to unless you don't want to go and then you blame your child. Right. Right.

You know, I am my husband and I were never above using our autistic child as an excuse not to do things. Absolutely. So sometimes.

But that said, if you want to go, I would go to Thanksgiving at my sister's and bring our neurotypical kid with me. My husband would stay home with our artistic one. And, you know, they would have mac and cheese Thanksgiving and we would go, you know, have a good time with the rest of the family and the cousins and something that my my autistic son just could couldn't deal with.

Oh, well. And I should say so. Speaking of the family dynamic, so in my household, it's me, my husband, my older son, who is now 24, has autism and my younger son, who is 22, does not.

[Kelley] (16:26 - 16:37)
And your son that has autism is living independently. Yes. Across the country from you.

He is very successful young man. Your perspective is worth hearing.

[Juliana] (16:38 - 16:53)
Well, OK, sure. And I will take some credit for early intervention and all those things. But as you know, you can we are all doing what we can to help our children reach their potential.

[Kelley] (16:53 - 17:46)
And that brings me to my son. So I have two children. My son is 25 going on 26.

My daughter is 24. And my son is, I would say, fairly severely autistic. But people don't always know that because he's so magnanimous and gregarious and he functions at somewhat of a higher level.

He's getting ready to try his hand at living independently in an apartment, of course, with assistance from people. But he's definitely anyone that meets him reiterates to me that they think that he is maxing his potential, which is all we can expect from people. And he continues to grow and he continues to make strides.

And that's what I want everybody to know, that don't despair ever, because you can always make improvements. You can always increase functionality.

[Juliana] (17:46 - 18:38)
Yeah. And just because our children are adults, it doesn't mean we're at the end of our own journey. No, like we are still, you know, every day, even though my son doesn't live with me, I'm always thinking about, you know, the challenges he has, and he still has challenges.

And yes, we're able to talk about them in ways that we were never able to talk about them, obviously, when he was much younger. But, you know, as we know, there's no cure for autism. So this is something that we're always going to be moving through.

And, you know, I'm really fortunate that at this point, he is very aware of his challenges. And he is also we've built a relationship where we can talk about it. And I know I am and my husband is, you know, are very safe places for him to call and talk through some of those challenges.

[Kelley] (18:38 - 19:13)
Going back to the woman that came into my office with a child with a late diagnosis and just being totally shell-shocked by it all. Yeah. Benefit of early intervention and early diagnosis that can be tweaked later as they grow and mature.

Is that help early on and the buy-in from the child from an early age. And so, yeah, not that, you know, we're going to talk about late diagnosis and the effect and what to do in those cases. But early diagnosis is a way to start your child on board for their disability and learning to live with it and manage it to the best of their ability.

[Juliana] (19:14 - 19:28)
Yeah, absolutely. So another thing that we often or every time we do this is we go, we have our to-do list. And with respect to mom guilt, if you are having those pangs, what would you do immediately?

[Kelley] (19:29 - 19:41)
Immediately, you tell yourself, I'm doing the best I can with the information that I have. I have to get more information and I'm going to do that, but I'm going to take a deep breath and remind myself that I am doing the best I can.

[Juliana] (19:41 - 20:01)
We're just going to pull a couple things off our list, but, you know, I know one I need to do, I still need to remind myself to do is like compliment myself like I would a friend, like be as nice to yourself as you would a friend. If like, if you call me, Kelly, and we're kind of beating yourself up over something, I wouldn't be like, yep, you suck. Yeah.

[Kelley] (20:03 - 20:07)
You would tell me that I'm doing the best I can. Yeah. So you should tell yourself you're doing the best you can.

[Juliana] (20:07 - 20:08)
Right.

[Kelley] (20:08 - 20:30)
Yes. And that's not to say that you're not making a mistake and you wouldn't, you wouldn't hold back if you knew I was making a mistake, but you would tell me in a heartfelt way and make me realize that it's okay to make, it's inevitable to make mistakes, but you dust yourself off, get back up and you try again, arm yourself with better information, more information and try something new. And that's all you really can do.

[Juliana] (20:30 - 20:54)
And arming yourself with information that's kind of goes into the short term goals, short term acts and long term. But but also in the short term, another thing you can do is if you are feeling overwhelmed, maybe you're feeling guilty because you can't do it all because nobody can, you know, renegotiate some shared duties with your spouse, your partner, somebody, you know, family member, get some help. Absolutely.

[Kelley] (20:55 - 21:19)
Try to get in the habit. We talked about this about going to the event that you love and you want to go to. But and that's a big day.

It's a big thing. But you five or 10 minutes to yourself every day can sustain you, has to sustain you some days. But yeah, try to carve that time out.

Try to save those iPad moments for that 10 minutes or that, you know, time for you to recharge your batteries.

[Juliana] (21:20 - 21:54)
Yeah, if you're obviously in the thick of it, if you're feeling really, you know, down on yourself or really, you know, struggling, focus on those short term goals. But in the long term, setting up, you know, consistent and reliable child care. This was always a struggle for me.

But it was and it and it wasn't just a one and done situation. I didn't just find somebody I was constantly trying to find people. And and but it's and it was really hard.

And we burned through a lot of, you know, one time babysitters, of course. But I really kept trying.

[Kelley] (21:55 - 22:08)
Oh, well, and a good resource for that. The schools, the teacher's aides, they're sometimes looking for extra cash. If you have a child in daycare, don't be shy about asking them if they ever do any side work.

[Juliana] (22:08 - 22:36)
Absolutely. We have a university close by that has a child development program, a really well, a really great one. And I, you know, put some posters.

This was, again, old school before handshake or anything else. I was like putting up little flyers, a really cute picture of my kid. And went back to my old high school, anything, you know, just looking for people to help out.

[Kelley] (22:36 - 23:11)
My son obviously had ABA and one of his therapists left the clinic that he was with. But our relationship with her continued because I asked her, do you ever do any side work? And she is his therapist to this day.

They meet via Zoom once a week. And she's known him since a young, he was a young person. They have a shorthand for communication.

And it gives him access to some behavioral, cognitive behavioral therapy in a way that makes sense to him. And he loves it and looks forward to it once a week. So those relationships can continue and grow in ways that you might not know.

[Juliana] (23:12 - 23:21)
The other thing that we want to focus on is the things that you should not dwell on. Don't do. We have gone so far as to call them blocked.

Yes, they're blocked. Not allowed.

[Kelley] (23:21 - 23:24)
All right. Don't indulge in negative soul talk, right?

[Juliana] (23:24 - 23:28)
Yes. That is going to do no one. I am very guilty of doing that.

[Kelley] (23:28 - 23:53)
Well, I think we all are. But you call me and I remind you that you're doing the best you can, right? Yeah.

And don't punish anybody, yourself or your kids for doing your best. You know, punishment and autism kind of don't go together. There are better techniques and you learn them as you go and try and take punishment off the table and open your eyes and your mind to a new way of communication with your child.

[Juliana] (23:53 - 24:16)
Yeah. And the one, the last one I want to focus on is that don't compare or compete with others in your orbit or, you know, with a focus on your own failures. It's really hard because, you know, in our situation, obviously you're not, you've got friends who have neurotypical kids, you have friends whose kids might be also on the spectrum.

You can't compare or compete with any of them.

[Kelley] (24:16 - 24:16)
No.

[Juliana] (24:17 - 24:34)
That is just, it's unfair to everybody and it does no good for anybody. Everybody is doing, you know, the best they can. And maybe you think somebody isn't doing the best they can.

And that's not something for you to focus on.

[Kelley] (24:34 - 24:34)
Yes.

[Juliana] (24:34 - 25:41)
No, that's not, that's you focus on your family. And that's the other thing. Like, you know, people go into social media, you know, echo chambers or they ask for advice or something.

It's like really your focus is your family. It's your experience. You know, what's going on.

No, you know, nobody knows what's going on in your house better than you do. And not social media, not chat GPT. No, you can ask it and they'll tell you some really nice things.

But it might not be the truth. It might not be the truth. But, but no.

So really just focus on what your family is doing, what you can do for your family. Thank you for listening to this episode of Refrigerator Moms. We have a free download that includes the full list of practical to-dos we shared in this episode on our website.

The paper includes additional what would we do's and background information on everything we talked about today. Find it on our website, RefrigeratorMoms.com. We'd love to hear your questions.

Send them in along with future podcast topics by connecting with us on your favorite social media. Thanks for listening.