Refrigerator Moms

[Kelley Jensen] (0:10 - 0:18)
Julianna, I have been telling you about pathological demand avoidance, PDA, as it's often referred to, for a long time, haven't I?

[Julianna Scott] (0:18 - 0:38)
You have. And when you first brought it up, you said you were talking about PDA, and I seriously thought you were talking about public displays of affection, which I am actually not for. So I was very confused about it, but I was excited to know that people were talking about it online and had strong opinions about it.

But it turns out you were actually talking about pathological demand avoidance.

[Kelley Jensen] (0:38 - 1:44)
Yes, and it has a very strong social media following, and I would dip into the group chats and I would marvel at some of the advice and how it was, on the one hand, saying that ABA, Applied Behavioral Analysis, is the Antichrist and should never be done with a child with a PDA profile. And on the other hand, I was marveling at how much of these suggestions of what you should do is ABA. It is regurgitated, revised, and renamed Applied Behavioral Analysis.

So we would have some good laughs about it, and I gave up commenting in the… Well, you got kicked out. I got kicked out of a group for pointing out that that's what a behaviorist would do.

Yes, so your opinion was not welcome. Was not, even though I support the idea of PDA and I support it as a profile of autism. But again, it's a function, a feature of autism.

As any parent that has an autistic child has read, the description of PDA has said, oh, that's my kid in a nutshell.

[Julianna Scott] (1:44 - 2:16)
Yeah, so what it is, so for those of you who are like me and did not know, so we, of course, wrote a paper about this. It's on our website at refrigeratormoms.com. But in reading directly from our paper, PDA is broadly defined as behavior exhibited by autistic children who exhibit obsessive resistance to everyday demands and requests.

So you can go to our version of a white paper and read more about it. But basically, it is a feature of autism.

[Kelley Jensen] (2:16 - 2:25)
Which is why we have titled this episode and our paper Pathological Demand Avoidance Autism by Any Other Name.

[Julianna Scott] (2:25 - 3:21)
Right. So it is a feature of autism and it's on the DSM in the UK, but it's not recognized at all in the US. It is not an independent diagnosis anywhere.

So PDA goes with autism. It's not a standalone. So and it's important to understand that connection between PDA and autism because PDA behaviors are autistic behaviors.

So recognizing that expands the pool of resources that you have access to for help. And that seems to be the crux of a lot of the social media posts that you're reading. It's like people going in there asking for help, which is really, you know, they're there, but then they're in this group that isn't really offering a lot of just some of the advice, some of the parents that are giving advice are such creative people and they're doing such such great parenting and they do have good advice.

[Kelley Jensen] (3:21 - 3:49)
Again, a lot of it behavioral advice. Right. But you have to be careful because there's a whole segment of the communities that are adults that have self-diagnosed themselves as PDA into their adulthood and they are rallying that it's not really autism.

It should be an independent diagnosis. And if you are just trying to parent your child and get ideas for how to best parent your child, it can be very confusing and overwhelming. And again, you are not joining a movement.

You're raising a child.

[Julianna Scott] (3:49 - 4:01)
Right. Right. And also, bottom line, every parent of an autistic kid has faced resistance to demands and resistance to change.

Like a pro. Like only the rigidity of autism can do.

[Kelley Jensen] (4:02 - 4:02)
Right.

[Julianna Scott] (4:02 - 4:05)
Yeah. So so is PDA real?

[Kelley Jensen] (4:05 - 4:38)
Of course it's real. Of course it is. As a feature of autism, there is no autistic child that does not avoid demands or does not avoid doing what they are supposed to do.

I mean, it's built into the diagnosis of autism developmental delay. Right. So part of that is is feature of autism.

Why might someone seek PDA as a diagnosis on top of autism? Again, which you cannot get in the United States. Although you can get practitioners that recognize it as a feature of autism.

So what would be the benefit of doing that?

[Julianna Scott] (4:38 - 4:48)
Well, I think it's it's the same as the benefit of any diagnosis. Like then it kind of gives you there's no manual for any of this stuff.

[Kelley Jensen] (4:48 - 4:48)
Right.

[Julianna Scott] (4:49 - 4:59)
So it kind of gives you a little more clarity, I think. Right. For people to think like, OK, if my child has PDA, this is what I can do.

[Kelley Jensen] (4:59 - 5:50)
And there are theories at best. They don't celebrate or they're not substantiated with a lot of research. And if you go into these groups to find research, you will not find it.

That it is a nervous system disability, that a person that has PDA has a fight or flight response that is, you know, it's a lot of it is based on a paper that was written in 2008. And again, how does that help your child? When people are preaching about a theory that is probably untrue and certainly not supported by most of the medical community.

Right. It's a feature of autism. Right.

You know, the fight or flight is a feature of autism. It's a feature of communication. But it is real and it should be addressed and it should be part of the diagnosis.

If the techniques will help your child respond, then, of course, you should investigate what they are.

[Julianna Scott] (5:51 - 5:56)
Yeah. But that said, what really differentiates PDA parenting from autism parenting?

[Kelley Jensen] (5:56 - 5:57)
Nothing.

[Julianna Scott] (5:58 - 6:00)
Nothing. So then we're back to that.

[Kelley Jensen] (6:00 - 6:03)
We're back to autism by any other name, right?

[Julianna Scott] (6:03 - 7:13)
Right. Right. And the tools and techniques to help your child with PDA is the same thing as autism.

So it's a little to me like when people get caught up on...it was a little bit more before the DSM-5. So in the DSM-4, you had all these different diagnoses you could have, like PDD-NOS or Asperger's and all these things. And you kind of sought the autism diagnosis because then you were sort of, again, under this umbrella and you could...but you were a little bit outside. And people got hung up on that, but ultimately it didn't matter because you were faced with the same symptoms, whether you called it PDD-NOS or Asperger's or autism spectrum disorder, it doesn't matter. PDA, it doesn't matter. You still have these maladaptive behaviors that you want to address and help your child to be the most functional that they can possibly be.

Yes. So ultimately, it doesn't matter.

[Kelley Jensen] (7:13 - 7:36)
So what differentiates ineffective PDA parenting from any other type of parenting? Ineffective parenting is ineffective parenting, right? Yes.

And what can a parent do to combat behaviors if they have a child that throws their body on the floor at every turn and seems to seriously be in crisis almost moment to moment?

[Julianna Scott] (7:36 - 8:05)
Well, back to your first question about the consequences of PDA parenting. We can talk about what PDA parenting can look like, not maybe what it should look like in terms of addressing those behaviors. But if you just say, you know what, my child's nervous system can't handle any kind of correction, what are those consequences?

Exactly. And what does that look like?

[Kelley Jensen] (8:05 - 9:29)
So again, in the comments, you get a lot of really smart people that have some really great ideas, and you get the sense that they've really studied this stuff. And there's one comment that stuck... Back before I got kicked out of the group.

There is one comment that stuck out to me from a therapist, and I think that this is something that should be taken under advisement by all of us. She said that sometimes you read this stuff, it clicks, so you try it with your kid and you get that honeymoon phase, right? So of course you drop a demand, and of course you're going to have peace in the house because you're not making the child try to go to the bathroom on the toilet anymore.

But then as time wears on, it goes from that was too big a demand to go on the toilet, then pretty soon going to the bathroom at all becomes too big a demand. And so you start chasing, wag the dog type of a thing. And then they actually do regress in the long run because there hasn't been that consistency, there hasn't been that inch forward.

So it's really more a matter of you're not going to get the progress you would like, but you certainly don't want to leave everything on the table and never come back to it again because then you've kicked the can down the road and nothing... You're dealing with a bigger issue than you would deal with if you just touched the line, right?

[Julianna Scott] (9:29 - 9:36)
Right, right, right. So what can parents do to combat those PDA behaviors?

[Kelley Jensen] (9:36 - 10:12)
The same thing that we can all do, which, you know, follow the advice of the people that know your child best. You're always doing research, right? You're always trying things and see what sticks.

And again, if all that seems to be sticking is doing nothing, then you're going to have to push a little bit. You're going to have to push. You're going to walk that line between making them a little bit uncomfortable to move them forward and backing off so that they can have some breathing room and go slower because they might just go slower.

At the end of the day, it's all about what battles you're going to pick, right?

[Julianna Scott] (10:13 - 10:34)
So you came to me with stories from social media about PDAs. This topic is hot. So tell me about the role that social media does play in sort of perpetuating the conversation or propelling the conversation about PDA.

[Kelley Jensen] (10:35 - 10:51)
Well, so it's a conversation that's dominated by a lot of social media influencers that have, you know, parents are overwhelmed. You know, you and I have been there at midnight. You're scrolling.

What do I do with this child? You had a really bad day. It was meltdown after meltdown after meltdown.

You're looking for ideas.

[Julianna Scott] (10:53 - 11:00)
Ideas and kind of validation for like, my kid's doing this. You know, what are other people experiencing?

[Kelley Jensen] (11:01 - 11:45)
And you go to the doctor and the doctor's got nothing for you. You know, you go to the school and the school's got nothing for you. And so you turn for resources and a lot of them are telling you, it's not your fault.

Your child has a... Of course, it's not your fault. It's never your fault, right?

It is. It's the hand we've been dealt. But they have this condition and you should do it this way.

And, you know, buy my seminar. You know, I've got this much free content, but then I have the... Oh, behind the paywall.

But behind the paywall is the answer to your prayers. And, you know, they're very popular and they are very prolific. But when you really get behind the curtain, you are like, well, wow, that's...

And it's seen antecedent behavior consequences, is all that is.

[Julianna Scott] (11:45 - 11:50)
So even though they're resisting ABA, they're actually offering ABA as a solution?

[Kelley Jensen] (11:50 - 11:54)
Well, no, they don't call it ABA. And so it's very clever. It's not a reward.

[Julianna Scott] (11:54 - 11:56)
It's a dopamine hit. Oh, dopamine hit, okay.

[Kelley Jensen] (11:56 - 12:43)
So you're not going to give your kid a sticker because sticker charts don't work because these kids have tried sticker charts and sticker charts don't work. So you're not giving them stickers. You're going to give them something else because that's a dopamine hit.

Okay. And isn't that clever? So it's not a reward.

So this is the funny story. I couldn't believe it. And I came to you and I was like, I cannot believe what I'm hearing.

So this one very popular influencer that has a following, as far as I can tell, she's not a licensed therapist. She's the one that kicked you out? No, I think that was a different group I got kicked out.

But she is not, as far as I can tell, is not a licensed therapist. She talks about how she counsels hundreds of families. But how do you counsel families if you're not licensed?

I still don't understand that. I have posed that question. And again, if you pose these questions, they'll just turn your comment off.

Oh, okay.

[Julianna Scott] (12:44 - 12:47)
So I never got an answer. Okay, you were kicked out, but you got your comment turned off.

[Kelley Jensen] (12:47 - 13:08)
Yeah, but I got my comment. I was silenced because I said, how do you counsel people if you're not a licensed counselor? Yeah.

And again, the fundamental basis of understanding what autism is, is just not there because that's not her area of study. Right. And she's got small children.

So she's not even, you know, she's still in the thick of it, right?

[Julianna Scott] (13:08 - 13:13)
She hasn't even seen the consequences of kicking that can down the road.

[Kelley Jensen] (13:14 - 14:05)
So she tells a story, again, she's doing very well in her career because she's got quite a big following and she's selling seminars and selling counseling to hundreds of families. And to get the kids to get in the car to go to school, because kudos to her, her children are able to attend school, she gives them a piece of candy every morning. Okay.

And they get in the car with their father. Well, it's a hit of dopamine. It now, I mean, you give a kid, a piece of kid, an autistic kid, a piece of candy every day to get in the car, the kid's going to get in the car, right?

Yeah. So if the kid doesn't get in the car for a piece of candy, then you just haven't found the right currency to trade them in. But this was good.

It was working for her good, but it wasn't a sticker, reward, incentive. No, it was dopamine, straight up dopamine. Okay.

Which, you know, I get a little, I get a high from a piece of candy myself.

[Julianna Scott] (14:05 - 14:06)
So I get that.

[Kelley Jensen] (14:06 - 14:29)
I'd get in the car for a piece of candy. So the one day she forgot to give him a piece of candy, they had a meltdown in the car because of course their routine was broken. Right.

And they had forgotten about it too, which that's a great thing. And one school thought would have been to pull over to discuss how well they did by forgetting about it to begin with.

[Julianna Scott] (14:29 - 14:35)
Or don't even pull over, just keep going. Yeah. And then realize like they're okay.

Or were they freaking out? It was not safe.

[Kelley Jensen] (14:36 - 15:31)
So it had escalated, so they had to pull over. And so he just pulled over and got in donut holes. And that ha-ha to all the parents that say we're being indulgent, ha-ha, because we gave them donut holes, but that was because they needed their dopamine.

And I thought, well, first of all, the therapist that I work with said, you never do something unexpected and expect anything but a meltdown, right? Expectations and what the routine is. And you step outside that routine and you can expect a meltdown and whatever you got to do to rectify it.

They would have trained me to have a stash of candy in my purse, so that would have been what I would have tried to do. But there's no way if I had taken something away and pulled the rug out from underneath them, I wouldn't have gotten donut holes too. But her whole premise was that they wouldn't let you do that in any other version of therapy.

And I was like, straight up, yeah, they would.

[Julianna Scott] (15:32 - 15:42)
Nobody knows anything about autism would do that, number one. And so then, you know, I just got... Or then you're just dealing with an autistic meltdown.

Right. And then you've got to deal with that. So you've got two things.

[Kelley Jensen] (15:42 - 15:55)
Are you staying at home because we had a meltdown over candy or are you throwing donut holes at him? But what she never got to was what happens tomorrow morning. Right.

So do we go back? Are we able to transition back to candy or does it got to be donut holes every day now?

[Julianna Scott] (15:55 - 15:55)
Right.

[Kelley Jensen] (15:55 - 16:00)
So is that... Now there's donut holes in the new version of... Right.

Dopamine.

[Julianna Scott] (16:00 - 16:16)
Right. But it's all dopamine. It's all dopamine and not a reward.

Okay. So when you challenge that thinking that, you know, what you're doing is really a form of ABA, like what's the argument that no, it's not? I don't know.

Because I never got an answer.

[Kelley Jensen] (16:16 - 16:30)
Because they turn off your comment. Okay. So if you have a three-year-old that is...

And you don't know anything about ABA and my comment about how is this different than a sticker chart? Right. I mean, it's a sugary sticker chart.

[Julianna Scott] (16:30 - 16:30)
Right.

[Kelley Jensen] (16:30 - 16:43)
Or this is an incentive. How is that different? You're not going to see that comment.

Right. But you do get the sense that parents, that the wisest of parents that are there for ideas and ideas only, you do get the sense that they're listening.

[Julianna Scott] (16:44 - 16:44)
Right.

[Kelley Jensen] (16:44 - 17:02)
So yeah, I never got a good answer. And I can't believe it. Right.

And then there's a lot of this... What's going on in their lives? They'll talk about these explosive meltdowns and attacking family members.

What's going on? So they're looking for an antecedent.

[Julianna Scott] (17:02 - 17:03)
An antecedent.

[Kelley Jensen] (17:04 - 17:23)
Yeah. Hello? That's an antecedent, right?

Yeah. I mean, you know? Yeah.

So of course, PDA is real. But of course, the advice is right here. Good old-fashioned behavioral science, right?

And autism by any other name, solutions by any other name, right?

[Julianna Scott] (17:23 - 17:23)
Right.

[Kelley Jensen] (17:24 - 17:25)
Reward, call it dopamine.

[Julianna Scott] (17:25 - 17:41)
Right. Well, so since you were in the habit of commenting on social media... No, I gave up on that because I got sick of being silenced.

So you're just like, I'm out. You guys can just figure it out for yourselves now.

[Kelley Jensen] (17:41 - 17:41)
You're on your own.

[Julianna Scott] (17:44 - 18:36)
Well, okay. But if those people find themselves here, we can tell them what we would do if we were in some of these similar situations. So this episode of Refrigerator Moms is brought to you by Brain Performance Technologies.

Brain Performance Technologies is a specialty mental health clinic that offers magnetic e-resonance therapy, or MERT, for autistic people age three or older. MERT is a transcranial magnetic stimulation protocol that utilizes an EEG diagnostic to deliver personalized magnetic pulses to stimulate the brain and build neural pathways effective in managing autistic symptoms. We were talking about this, and in our papers on our website, we have more what would we do scenarios.

But the one we really wanted to talk about is the biggest one. And it's what do you do if you're not sure which battle to pick? Picking your battles.

[Kelley Jensen] (18:36 - 19:51)
And that's really probably the best advice of PDA is to pick your battles. You get stuck with wanting them to move forward and you get nervous all the time. They're not progressing.

They're below reading level. They're below developmental level. And it's very upsetting.

Pick your battles. So you always come back to that center. What is the battle?

What hill am I going to die on? I'm kicking the can down the road to what, right? What is the ultimate?

If all goes wrong, I will be here. If all goes right, I will be here. Which battles do you pick?

And so parents need to always be thinking about that. And I think one of the things that we don't like the most about the PDA advice that's out there is that it tends to isolate parents. They've got their social media echo chambers that they could turn to, which, you know, get off there because you've got parenting to do, right?

So they've got their social media echo chambers that aren't giving them a full view of parenting. And then they can't do ABA that's available to them. The kids sometimes can't go to school.

So it's just mom a lot of times. Dad's got to go to work. And a lot of times it's mom that is there in the house alone.

[Julianna Scott] (19:51 - 19:52)
The primary caretaker alone.

[Kelley Jensen] (19:53 - 20:20)
Yeah, in it. And it's very isolating and never turn down a fresh set of eyes, right? So that's kind of the first thing that we are going to say.

Any advice that leads you to more isolation, take with a grain of salt. Right. That's the first thing.

So when picking your battles, what does the end look like, right? You're kicking the can down the road. What does the end of the road look like?

Are you creating a bigger problem later if the child doesn't outgrow it?

[Julianna Scott] (20:20 - 21:08)
Yeah, yeah. But in determining that, I think we kind of honed in on what to look at first. Number one is safety, right?

So we are determining which battle to pick. Obviously, number one is safety. If your autistic child, if there are siblings in the house, if they are unsafe, if you yourself are getting unsafe, I know when my son was at his most physical, obviously it was getting unsafe for his younger brother, but also he was getting big and he was getting, you know, I was starting to worry about my own safety.

If he continued to be that physical and grow at the pace he was growing, there was no way I was gonna be able to handle that. So safety, number one. And that comes up over and over.

[Kelley Jensen] (21:08 - 21:19)
The meltdowns are violent and, you know, and of course, well, what's going on? You know, I've reduced demands. There is no demands.

You know, he sits on his iPad eight hours a day.

[Julianna Scott] (21:19 - 21:39)
Right, and you're still getting those meltdowns. So, yeah. So that's not working, number one.

That's gonna tell you that if you're still getting those meltdowns and you are, you know, not pushing back on any of that, trying not to modify or not trying to modify that behavior. Yeah. Like that's not working either.

Yeah.

[Kelley Jensen] (21:39 - 22:29)
So, I mean, where safety is concerned, that's a battle you pick and you pick that battle and you look at every single philosophy, every single resource in your arsenal. Don't worry about what you call it. It could be ABA.

It could be anything. But if it is a resource that you have available, you should try it because what you're doing is not working. Right.

Medication, restraint, you know, there are versions of restraint that are ethical and safe. Yes. Frankly, you need to know before your child gets too big a safe space.

I saw this one commenter, again, some of the parents are really doing incredible things with their kids, a cuddly box or something. But it was really cool and it was just basically a safe space to put the child. Now, you can't do this when the kid gets too big.

Hopefully, if you start it when they're really small and you put them in their cuddly box.

[Julianna Scott] (22:30 - 22:38)
Cuddly box. I like that. Is it like I've seen advertisements for those dog beds for humans?

Is it that? A little bit like that.

[Kelley Jensen] (22:38 - 22:48)
It's kind of a compression, but it's just a safe space to put them when their bodies are rebelling and they're just not safe. But you might need that for a couple of years, right?

[Julianna Scott] (22:48 - 22:48)
Right.

[Kelley Jensen] (22:48 - 23:12)
What does that look like in your family, in your situation? A cuddle box, I think it's called. Yeah.

Do it now so that you get a routine of, oh, I'm headed towards a meltdown. This is where I need to go. Medication, we talked about that.

And again, what do you do if you can't get the kids to take the pills? Well, that's maybe one of the advantages of starting when they're a little bit younger.

[Julianna Scott] (23:13 - 23:36)
And if they're resisting that, that is really something that you want to... It's a much easier thing to start. All of these things are much easier to try when they're younger and kind of really start building that routine.

But that would be definitely a priority to pick because medication, whether we like it or not, is probably going to be part of their lives for all or parts continually.

[Kelley Jensen] (23:36 - 23:46)
And we have a paper about medication. And we will be talking about it. But it's another feature of autism is medication.

[Julianna Scott] (23:46 - 24:49)
So make peace with it if you've got a child that's prone to violent meltdowns. Also, beyond the safety, I know another, the second thing we would look at is an issue of basic functioning. And I know some of the top ones are sleep, for sure.

So it's really interesting because a lot of people whose child is having trouble sleeping, there's a lot of co-bedding, sleeping with the parents, all this stuff. OK, I would definitely list this as a top priority because you don't want to be having this conversation. First of all, you need your sleep.

Often, it's kids like dogs in the bed. It messes with your own sleep. And also, it messes with the intimacy.

Enough said. And also, parenting together is tough enough. You need to carve out some space to yourself as a couple.

And then also, you don't want to be dealing with trying to wean your kid out of your bed when they're dealing with college applications.

[Kelley Jensen] (24:50 - 26:15)
Like, it's just enough. It's enough. And you would be surprised at how many times somebody's like, OK, well, my kid is 12, and I'm really too big now.

And a lot of times this happens. There are people that are, why not co-sleep? They do it in lots of cultures.

And I'm not a big fan of cherry-picking what from other cultures you want to emulate and what you want to ignore. Like, sometimes the things in other cultures that they do, they do it because they don't have any choice. Or you're not really in that country, so it's not a great example of how you should be doing things.

Toileting is a big one. Toileting comes up over and over. And again, the question comes back to, what does this look like if they don't just outgrow it?

So if they're sleeping in your bed, are they just going to outgrow it? And you know how you can tell they're probably not just going to outgrow it? If they're an anxious person, you have an anxious child and you create a habit for them, they are going to cling to that habit.

And a lot of these kids are very anxious. And they do, just the rigidity of autism, they cling to the routine. So whatever you make a habit is going to be a habit.

And you're probably not going, even if they want to sleep alone, even if they don't want to be in your bed, even if they don't want to not be potty trained, they're going to cling to the anxiety and routine of it. Watch anxiety. And if anxiety is a level, then hit that at whatever these priorities are for your battles.

[Julianna Scott] (26:16 - 26:36)
And if that is how you're dealing with your child's anxiety, I mean, again, that's not sustainable. So we get this a lot. They say, well, I don't want to traumatize my child.

Well, how traumatic is it going to be if they're in high school with a diaper and sleeping in your bed? It's robbing one trauma to pay the other trauma.

[Kelley Jensen] (26:36 - 27:31)
So again, what does the end of the road look like? Is it a bigger trauma than if you do nothing? Now, school.

So we've got safety, of course, and their own health. This comes up a lot with not being able to go to the dentist, not being able to have blood draws. Those are all things you and I, of course, we went through.

Every parent, not even necessarily an autistic child, goes through a kid scared of needles. Right. But the dentist, are you going to let them just let their teeth rot?

And that happens. And then so what happens if the teeth are rotted? Then you've got a major dental problem, right, and gum disease.

You've gained nothing by not giving them a little trauma with a good dentist when they're younger. Right. So those are issues of health and safety, of course, issues of sleep, issues of toileting and bodily function, of course.

Pick that battle.

[Julianna Scott] (27:31 - 27:32)
Right.

[Kelley Jensen] (27:32 - 27:32)
Yeah.

[Julianna Scott] (27:32 - 27:38)
You're going to look at what is the consequence down the road and then think, like, what are the alternate solutions? Right.

[Kelley Jensen] (27:38 - 28:31)
And it seems so hard in the moment because your child is battling you every single day. So you're probably, maybe you're not going to be able to do sleep and toileting the same year. Maybe you pick one or the other, right?

Yeah. But pick a battle, one battle at a time. Yep.

And just, you know, take it one step at a time. And that's the battle of the year, whatever you choose. Schooling is a little different.

A lot of these people say that they can't get the kids to go to school. There's school refusal. And I mean, school is a tough one because, well, there are alternatives.

Yes. And if your family can afford an alternative school or if you can afford to be home and homeschool your kid or unschool your kid or the Ds, we've got de-schooling, unschooling, homeschooling. It's all very confusing.

But it should only be attempted if you as a parent have the wherewithal for that. And kudos to you if you do.

[Julianna Scott] (28:32 - 28:59)
But maybe, probably not. There were moments in my son's life where I considered homeschooling when we were having trouble finding a good fit for him. And then I realized that that was going to not benefit the family.

So again, always consider, you know, how is this going to benefit? There are, yeah, consider all the people in your household. Yeah.

And who is this going to benefit the most?

[Kelley Jensen] (28:59 - 30:02)
The school is very, very hard. I had the same experience where, should I be just homeschooling this child? Would I, you know, do better if I hired a tutor?

Right. That kind of thing. Ultimately, though, I found an alternative school and I worked with the school district and we had a good experience in our school district of them finding an alternative school.

I mean, I know not everybody has access to that in the country. You know, some school districts are different. But look for those alternatives.

Look for alternatives. And that might be a ballot you decide not to pick. You might decide that it's okay if he doesn't read at grade level.

It's okay if he doesn't learn that. Okay. Yeah.

He'll learn it in his own time. But, you know. Yeah, we're not in a hurry for that one.

But, you know, let's get him out of bed. Again, it comes down to how big a problem are you going to have, right? And even if maybe he's never going to learn enough to live on his own.

Right. So then what you need to work on is you need to work on him being okay with that. Right.

Him or her being okay with, well, you're not learning this and that's okay. You know, you'll just always be with me or we'll always have to make alternative plans. You got to go with the program.

[Julianna Scott] (30:02 - 30:02)
Right.

[Kelley Jensen] (30:03 - 30:11)
If you can't take care of yourself, then somebody else is going to have to take care of you. And that's a whole other different battle that you're going to have to think, right? Right.

But again, one thing at a time, one battle at a time.

[Julianna Scott] (30:11 - 30:31)
One thing at a time. So while we're in the business of telling people what we would do, let's move to our to-do list. All right.

Because we do love a list. If we were in this situation, we identified our child as someone who has PDA, what would we do immediately?

[Kelley Jensen] (30:31 - 30:42)
I would look at confounding factors. What is going on that is driving this demand avoidance? The A of the ABC.

The A of the ABC. What could I cut out? I wouldn't cut it all out.

[Julianna Scott] (30:42 - 30:43)
Yep.

[Kelley Jensen] (30:43 - 31:03)
And I wouldn't give them an iPad and let them sit in their room when they're in burnout. This comes up a lot. They're in burnout.

Well, okay. But what can you do right now to take some of the burden off of them and set them up for reintegrating back into their lives, right?

[Julianna Scott] (31:03 - 32:04)
Yeah. Yeah. And I know we just talked about it, but it's worth reiterating is to pick your battles.

Yeah. There will be battles, so you got to pick them. That's right.

Yeah. So, and again, part of that pick your battles is really having that foresight to say like, okay, I'm going to pick this battle because if they want to ever move out, be in the workplace, do all these things, it's worth picking those battles. I know with my son, some of the battles that we were picking with him were things that now serve him well now that he's in the workplace.

It's like you need to get to that point. And just letting him drive the bus on what he was willing to resist wasn't ultimately going to serve him. Okay.

[Kelley Jensen] (32:04 - 32:09)
And in the immediate, what are we saying in the immediate? Again, there's more information in the paper.

[Julianna Scott] (32:10 - 32:12)
Well, we said the intermediate, so short term.

[Kelley Jensen] (32:12 - 32:12)
Short term.

[Julianna Scott] (32:12 - 32:16)
Short term, study autism and autistic traits. Yes.

[Kelley Jensen] (32:16 - 33:03)
Yes. I mean, this comes up over and over. The lack of understanding about what it means to be autistic is shocking.

And some of these supposed experts and these people that are making their living off of your child, they don't understand autism. Well, you can't separate PDA and autism. And you shouldn't try.

Study autism. Again, you're always picking the battles that matter for your child. So you got to be realistic about your child's capabilities and where they are right now and how you inch forward.

You don't move forward, you inch forward. So identify what realities there are for your child right now. Get help for those need to learn.

Continually seek out help and continually seek things that do not isolate all of you.

[Julianna Scott] (33:03 - 33:17)
Yeah. Yeah. So in the long term, it's really, again, we know we're hammering this home hard, but study the antecedent behavior and the behavioral science.

So you've got to educate yourself and be the detective of your own child.

[Kelley Jensen] (33:17 - 34:55)
Well, if you study behavioral science and if you study PDA, probably the best resource for PDA is the PDA Society of the UK. If you look at their website, after you've studied some even cursory behavioral science and done the bare minimum of reading about it, you can do your own renaming of the terms that are so popular in PDA, right? Connection and collaboration.

Two choices, right? That's just good old fashioned, give them two choices. Right.

Time to process. Anybody that knows anything about autism will tell you to give your kid time to process. So again, study behavior and have some fun comparing the regurgitated verbiage.

And then be inspired by families that have other struggles and physical disabilities and how much they accomplish. You know, it comes up a lot. Well, if your child was diabetic, if your child was in a wheelchair, you wouldn't make them walk up the stairs.

Right. You know, I'm not a fan of that. If your child was blind, you wouldn't make them read.

You'd probably teach them braille. Right. And that'd probably be really hard.

Right. And you'd probably deal with some behaviors and some resistance on the way. So, you know, take that as inspiration.

Don't take that as, I'm not going to make my child do anything because he has a real disability. Okay. Disability is by nature traumatic and disability is by nature hard work.

So if you believe that your child is disabled, then you sign on for a lot of hard work. But it doesn't mean you just go, oh, well. Oh, well, don't do it.

Right. And certainly don't take the name of blindness and physical handicaps as a reason not to make your child do something.

[Julianna Scott] (34:55 - 35:14)
Right. Right. Building on that, we go to blocked and that kind of leads us to our first blocked one is don't diminish physically disabled people's accomplishments and functioning for the purpose of evaluating your own child's abilities.

Yes. So it's the other side of that coin.

[Kelley Jensen] (35:14 - 35:24)
Yes, absolutely. And then don't self-diagnose or diagnose. I see this a lot of times.

My child, not yet diagnosed.

[Julianna Scott] (35:25 - 35:39)
Right. Stop right there. Or it's like, oh, I'm, you know, I'm planning on diagnosing.

You see that a lot. Yes. Or we're on a waiting list.

And I get that. But you have a hunch or you think or you're going to, or maybe self-diagnosing.

[Kelley Jensen] (35:39 - 36:15)
Yeah. Just take that with a grain of salt. You're not there yet.

So don't do that in exchange for talking to professionals. And of course we see this over and over and over. And I, you know, this is great that I saved a quote from you.

I thought that you would get a kick out from one of these social media influencers because her suggestion was to get help. Oh, that's a good one. Yeah.

Get help. It should be PDA informed help, but get help. Right.

That's revolutionary.

[Julianna Scott] (36:16 - 36:16)
I know.

[Kelley Jensen] (36:16 - 36:18)
Get help. Good idea. Right.

[Julianna Scott] (36:18 - 36:19)
It is a good idea.

[Kelley Jensen] (36:19 - 36:33)
But when you are limiting the set of resources that helps, that would help, you know, and don't be afraid that it's going to make your child any worse. It's not going to make your child any worse unless it's not clicking. And then if it's not clicking, find someone else.

[Julianna Scott] (36:33 - 37:24)
Yeah. Right. I do think this one's funny because our final to do is to, well, this one isn't funny.

Don't join those social media echo chambers, but, you know, and don't take their advice from social media. But I say it's funny because we're here giving some advice, but our advice is to take your own advice. Like, listen to yourself.

Like, you know your family, do your research. You know, you're not getting, when you're in a Facebook group or responding to somebody online, you're not giving them the full picture. You're not giving them all the context.

You know, they can't possibly, even if they wanted to and were capable of making a good informed opinion to give you. So, you know, they don't have all the information. Right.

And you're not going to be able to give that to them in a, you know, in a frantic, you know, 1am post.

[Kelley Jensen] (37:24 - 38:00)
And I will say this in our defense of joining the social media echo chamber. That's why we have these papers because we have been there at midnight. And when we were looking for ideas and we always talk about that, what is the idea?

What ideas do you have? Because it's really all you've got is something you can try. You know, the whole try and civic method that we are going to talk about later.

Yeah. These papers are designed for you to launch some of your own ideas and they're cited. There's bibliographies.

We are not saying that you should do what we say. We are saying, here's an idea. Go hunt it down for yourself.

[Julianna Scott] (38:00 - 38:13)
Right. See if it fits. Not everything out there is going to fit everybody's circumstances.

And we are certainly not asking you to pay us for these papers. No, no, not behind a paywall. So why is it important to have this conversation?

[Kelley Jensen] (38:14 - 38:39)
Well, no matter what you call it, parenting is hard. And parenting of an autistic child is extremely, extremely hard. Yeah.

You need ideas. You need resources. You need help.

And you want what's best for your child. So this conversation is designed to help you get a complete view of all of these possibilities for your child as possible.

[Julianna Scott] (38:39 - 38:55)
Yeah. So, you know, and PDA is having this moment on social media. And we just want to emphasize, you know, how important it is to look into these new terms.

This wasn't around when our kids were growing up.

[Kelley Jensen] (38:55 - 38:56)
No. When they were little.

[Julianna Scott] (38:56 - 40:44)
And so, you know, look into these without forsaking the old ideas. You know, sometimes, you know, an old idea is still a good idea. A hundred percent.

Or it's still an old idea. It's just got a new name. Yeah.

It's not a reward. It's a dopamine. That's right.

Well, I think it is really important to also just stay informed about what is happening out there and what people are doing. And, you know, we're all still struggling with the same thing. Yes.

No matter what you call it. Yes. Thank you for listening to this episode of The Refrigerator Moms.

We have a free download that includes a 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, where you will also be able to sign up for our newsletter. We'd love to hear your questions. Send them in along with your future podcast topics by connecting with us on your favorite social media. Thanks for listening.

Please note that the information provided in this podcast is for informational purposes only, and it is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have heard on this podcast.

The opinions and views expressed in this podcast are solely those of the hosts and guests. Any recommendations or suggestions made are based on personal experiences and beliefs and should not be taken as definitive advice. It's important to consult with appropriate professionals for personalized guidance.

A full list of citations and sources for this episode can be found in our Refrigerator paper available on our website.