I recently had the opportunity to interview Dr. Jessica Myszak about Autism Masking and PDA or Pathological Demand Avoidance. If your family is experiencing either of these, I highly recommend you watch this video. (and it’s only 18 minutes long)
Or, if you wish to read the transcript you can do that too.
Lisa Lightner [00:00:00]:
Hi, everyone. Welcome to another episode of the Don’t IEP alone podcast. With me today is Doctor Jessica Mysak, She is from the Chicago area. She is a a psychologist who specializes in autism assessments. She does both in person and telehealth evaluations. So she’s available not in all 50 states, but almost. And she has all developed a niche in less typical presentations of autism, such as autism and AFAB children and adults, high masking children and adults and also PDA, which is pathological demand avoidance, which you may have heard of. We’re gonna get into all of that now. So welcome, Doctor. Mayzak. And if you’d like to introduce yourself, tell us a little bit about you.
Dr. Jessica Myszak [00:00:49]:
Great. Yeah. Thank you so much for having me. So like you said, I’m a I’m a psychologist. I actually practiced down in Memphis for about 10 years before I moved back, back up home to the Chicago area, and had the, the privilege of, of starting my own business, right, as COVID was hitting. And so that was kind of an interesting thing and, you know, learn to do some things a little differently than what I was anticipating. But, yeah, my, my practice is designed to provide neurodiversity affirming evaluations, for families. End, you know, especially for, for adults, like you said, with high masking individuals, people who are are not necessarily the person’s gonna walk in the door that people are gonna assume. Okay. I think there might be autism there. And so I love what I do. I have another colleges that works with me too. And I’m passionate about sharing information. So I’ve, you know, in during this COVID time, learned to share some information on TikTok, which I know can be kind of controversial, you know, in different groups, and also have started up an online community for autistic adults to share and and to, connect with others.
Lisa Lightner [00:02:01]:
Great. Okay. So you said the word, high masking. So for those listeners who may not really even understand what masking is or what high masking is, tell us.
Dr. Jessica Myszak [00:02:12]:
Yeah. So so masking is essentially playing a role. It is hiding differences or aspects of person itself that, that maybe feel like they might be different than other people. So there’s sort of different aspects to this, but, for some people masking might be people watching and imitating things that they see other people doing. So it might be, reading a book about body language and learning like, oh, okay. I need to make eye contact at this certain time and I need to, you know, stand in this certain way when I to enter a conversation. But it can also be some other things like avoiding situations that are really uncomfortable, or it can be sort relying on somebody else, to, to be there to kind of help with different social situations too.
Lisa Lightner [00:03:03]:
So how does a person, if internally they’re having these conversations with themselves that they need to act different? And maybe not be their true selves. Like, like, they have an awareness that what I want to do is not socially acceptable. So I’m gonna, you know, pretend to do something else or I’m gonna avoid the situation entirely. How does a person like that then perhaps come to you Right? Like, like, if this is just life as they know it, that’s their reality. How do they come to the whole thing of, oh, wow. Maybe I’m autistic or maybe, you know, maybe I’m neuro, you know, having neurological condition different from others.
Dr. Jessica Myszak [00:03:46]:
Yeah. So, so it’s interesting because I do think with masking, there’s people who are very, very aware and very cognizant that this is going on all the time. I mean, so it’s essentially almost like a running checklist in their head of, I need to look. Okay. Now I can look away for a second. Okay. Now I need to look again. I need to monitor how much I’m speaking and how much the other person is speaking. So I think for people who have that experience, they know it’s happening, and it and it’s very, very exhausting. But you’re right. There are some people who, you know, this has become so automatic. This has become so autopilot, because yeah, especially for, for older teens or for adults who’ve been doing this for years years years, you know, all of this, this doesn’t just develop night out that there’s a lot of little things that’s often developed over time. And so for some people, it can be really hard to even recognize the is something that, is happening. And, you know, I I brought up TikTok, but I do think, you know, that is part of how some people are becoming aware of this because I do think, that when you talk about autism, there’s absolutely some stereotype out there. And I think, you know, before, you know, maybe 10 years ago, 15 years ago, people would think about Sheldon. People would think about rain man and some of those really big obvious media stereotypes. But what social media has done, it’s allowed people who don’t look like people who, yeah, you might not assume. You might not know anything about their sort of internal personal lives, who start sharing information about what that, what is going on for them. And I think there’s a lot of people who are relating to that and realizing kind of sometimes really quick, sometimes just a little bit at a time, like, oh, wow. This This is something that’s going on for me, and this is something that’s exhausting. And, and I do think that’s a big part of this masking. So you know, to some extent, everybody does act differently in different situations. You know, if you go into a library, you gotta speak a little more quietly if you are you know, approached by law enforcement. You know, there’s there’s some rules there that you’re like, okay. I need to, yeah, act a little differently in this situation. But but the idea of masking, especially with autism is that it’s it’s for safety. It’s it’s all the time, and it is really exhausting and takes a toll on a person.
Lisa Lightner [00:06:04]:
So what what are some things then that parents should be on? I mean, now I think it sound sounds like you deal with mostly an older population and maybe not the littles.
Dr. Jessica Myszak [00:06:15]:
I I do littles too, but, yeah, no, more more of my stuff recently has been for for older people. And it’s actually interesting because a huge interception there. There’s a lot of adults who don’t even recognize autism until they have a child diagnosed or a child or an adult is diagnosed, and then they have a child and so reality. So there is, for sure, overlap.
Lisa Lightner [00:06:37]:
Okay. So what would what would parents Like, what should they be on the lookout for if, you know, if a if a child is masking, that’s just it. Like, they’re masking. Like, they’re trying to not be autistic. Essentially. And so then a parent first of all, they may not even see it, but parents and teachers may also there’s this whole thing of, well, we know he can do it. So do you know what I mean?
Dr. Jessica Myszak [00:07:03]:
Yeah. No. Absolutely. And and I would say a common occurrence people have is that a child might mask all day at school. So they learn, oh, this is what the expectation is. This is what the teacher expects of me. And so they are on all day at school. And then as soon as parent comes and gets them, there might be, you know, huge meltdowns either with that transition or just when they get home, they might exhausted and need, you know, hour long naps after school just to kind of be able to recuperate. And so that’s, that’s a really common occurrence because, you know, with parents, they’re safe, you know, and so they don’t, yeah, don’t don’t necessarily feel like they have to put on that mask. And and that can be really, really hard because The school’s not seeing it because they’re, oh, no. Everything’s great at school, but but for sure it’s an issue at home.
Lisa Lightner [00:07:52]:
That is very common that we don’t well, we don’t see that behavior at school. Kind of thing. So, yes, that’s that’s when we go with a lot. Okay. So let’s talk about the other practice area that you have. Is PDA pathological demand avoidance. I wanna say in, like, the past, what, 3 to 5 years, that’s getting a lot more buzz. Yes. But there’s still the, you know, as you know, it’s not in the DSM, so it doesn’t have a code, and we live and die by the codes. So tell us a little bit about what it is. How something like this, like, gets a name, if it’s not in the DSM yet, and then how you think it’s going and how you would address the people to say, well, you know, especially the school teams, well, that’s not really real.
Dr. Jessica Myszak [00:08:38]:
Lisa Lightner [00:08:38]:
Dr. Jessica Myszak [00:08:39]:
Yeah. Yeah. So so PDA, and, again, the formal name is is pathological demand avoidance, which, you know, doesn’t sound great. A lot of people that do recognize this actually prefer the term, persistent drive for autonomy, which I think also really fits. And so what this is, it is a profile of autism. And you’re right. It’s not in the DSM. But I think, you know, this is autism, but I think it’s important to recognize. And, So, again, it, it doesn’t look like typical stereotypical autism that we’re used to, but there’s a significant anxiety component that goes along with perceived demands. So it could be, you know, really obvious things like clean your room, do your home could go to school. But often it’s even things that a person is excited about or wants to do. So go to, you know, a ballet class or excited about wanting, you know, reading a book that they, you know, new books that they have. Especially a lot of families see this with, some of the self care things like bathing, showering, brushing teeth are kind of huge areas where a lot of parents see this. But, yeah, there’s, you know, this kids that meet this profile and adults that meet this profile when there is a a perceived demand, something that they being asked to do, something they’re being forced to do, rush, you know, rush to do, creates this fight or flight or freeze thoughts. And so there’s, you know, there might lead to meltdowns or might lead to extreme, reactions, emotional reactions, or trying to get out of the demand in other ways. So, you know, trying to, you know, either delay or try to, you know, sort of manipulate the situation to avoid getting into something. And so, you know, I think so you’re right. It’s not in the DSM. The DSM doesn’t move very, very quickly. So no.
Lisa Lightner [00:10:45]:
It does not. It’s been it’s been already 10 years, I think, since It’s the last one. So —
Dr. Jessica Myszak [00:10:50]:
Right. And you think, you know, it hasn’t been so long ago since there were some things in there that we definitely don’t recognize as as mental illness or mental disorders. So again, it’s autism. So, you know, I think schools recognize that, yes, there is some been going on. Sometimes PDA is instead mistakenly diagnosed as oppositional defiant disorder, which I know is a, you know, an interesting diagnosis that people have a lot of different opinions on. And I think the value again in, in recognizing this profile is that there’s some specific things that work really, really well, and there’s some specific things that are often used with autism and are often used with ODD that really don’t work well with this group of kids. And, you know, I know this podcast is is, you know, designed for parents who are looking for help with IEPs. A lot of the kids that I see with this profile have a lot of trouble in school and a lot of them are, are homeschooled or unschooled or parents decide that’s, you know, public school is not the best option for them just because it can be so, so challenging, you know, either getting them to school or keeping them at school.
Lisa Lightner [00:11:59]:
Right. So, does PDA occur co occur with anything besides autism? Is it so it and then what you just said to me is kinda like when you said it’s autism. I had always assumed that it was kind of like its own little thing. Like, that you could have it and have ADHD or and have dyslexia. You know what I mean? But not necessarily autism. Does it only occur with autism?
Dr. Jessica Myszak [00:12:26]:
Yes. So, yeah, it is a profile of autism. So, so to have this, you do have to meet the full Craig for autism.
Lisa Lightner [00:12:34]:
Okay. And so one of the things I’m I in fact, I was just recording a video for something else earlier. I’m constantly telling parents and IEP teams. Like, it’s that whole won’t versus can’t. Are they not doing this because they can’t or because they won’t? And I think when you talk about PDA and ODD, we’re talking about won’t. Right?
Dr. Jessica Myszak [00:13:01]:
Lisa Lightner [00:13:02]:
I mean, from from the, I don’t wanna say layman’s, from from their typical thinking, like, oh, he’s not doing that. Okay. He won’t do that. Like, he won’t go whatever. He won’t go to the bathroom and take a shower. Like, I asked him maybe.
Dr. Jessica Myszak [00:13:17]:
Yeah. And, actually, I think that’s a pretty pivotal distinction that that with PDA that we make is that it actually more is a can’t. It’s it’s that anxiety. I mean, it’s sort of, it’s seeing you know, rather than, oh, they’re being manipulative. They’re, you know, just being defiant because they just don’t want to do something. It’s recognizing it as, okay, their experience extreme panic in this moment. So it’s essentially, you know, seeing it as a, as a panic attack as opposed to a temper tantrum. And then you think, you know, what does somebody need when they are experiencing panic like that? They don’t need consequences. They don’t need, you know, harsh direction. They need support. And they need, you know, the pressure taken off. And so they can, you know, kind of relieve that anxiety.
Lisa Lightner [00:14:02]:
So taking into consideration I’m just trying to think of, like, a demand that is kind of, like, non negotiable. Let’s say, like, not walking in traffic or like, at a certain point, like, showering. Like, okay. You cannot shower right now, but we can’t not shower forever. Right. You know, those kinds of things, how do you kind of move the child past that scenario that situation.
Dr. Jessica Myszak [00:14:28]:
Yeah. So there’s
Lisa Lightner [00:14:29]:
— — non negotiable. Like, like, I wanna walk over there. Like, I, like, there’s something over there that’s interesting to me, but we’ll know you can’t walk across an Elaine interstate to go see that. You know what I mean?
Dr. Jessica Myszak [00:14:39]:
Right. Yeah. Absolutely. Absolutely. So so a lot of it is Finding ways to so so number 1 is just having a good relationship. And I think that, you know, this is one of those things that is really really important. And, you know, I think we intuitively know this that, yeah, if you have a good relationship, you know, and, and, and a child feels like they can trust you and that you you know, have their best interest, they’re, they’re gonna understand that. And so, you know, that’s a huge, huge part of, you know, building up that relationship, and not just having consequences, not just having, you know, sort of making it a punitive relationship. But but a lot of the recommendations, you know, sort of after that relationship is good after you get to know, you know, spending time getting to know somebody before you jump into stuff they have to do. Is finding ways to help make it their choice a little bit. So, something like, yeah, showering. So, yeah, you, you know, would it be easier for you to shower now, or or would you rather shower after breakfast, or sometimes making it fun making it a game. You know, oh, I bet I can shower before you. You know, so something where it’s, you know, the child has, you know, it can be their choice as opposed to, you know, sort of turning into this battle of wills.
Lisa Lightner [00:15:56]:
Okay. Okay. And then how does it differ from ODD? Other than ODD is its own diagnosis?
Dr. Jessica Myszak [00:16:04]:
Yes. Yes. ODD is its own diagnosis. And I know, you know, there’s a lot of professionals that that won’t even won’t even diagnose it just because there’s, you know, I think there’s some concerns about how it’s diagnosed and and sometimes how people perceive this because I think you’re right. That, that one is definitely seen as more of a, they won’t do it. We need to add in more consequences. So usually there, you’re not seeing that extreme anxiety, and then also ODD, in is less commonly seen with autism whereas, you know, PDA has to be a part of autism.
Lisa Lightner [00:16:38]:
Okay. Interesting. Yeah. No. That was Hey. I learned something today. I’m glad. Awesome. Yeah. No. I thought it was his own thing. I didn’t realize that it’s a characteristic So now that you’ve said that and and I’m processing it, it’s likely not going to be in the DSM because it’s not its own thing. Right?
Dr. Jessica Myszak [00:16:59]:
Yeah. I mean
Lisa Lightner [00:16:59]:
— I mean, it might get listed as as a thing, as a trait, but it’s not it’s not going to have okay.
Dr. Jessica Myszak [00:17:05]:
Lisa Lightner [00:17:07]:
Okay. Wow. Okay. Great. Okay. Tell everybody where they can find you your websites and what you offer.
Dr. Jessica Myszak [00:17:15]:
Yes. So, you can find me at, help and healing center.com. It’s kind of a mouthful. And I am also on, like I said, tick talk at just Doctor. Jessica Meiszak. And then for any adults out there that are looking for support, that community. I talked about it is free, but it is private, and you do have to sign in just to keep it private. It is autistic support network.com. I’d love to see people there.
Lisa Lightner [00:17:43]:
Great. And I will put, links and everything in the show notes if you’re listening and because we also don’t expect you to learn how, you know, how do I find Doctor. Jessica Mizek on TikTok if I can’t spell Mizek. But we’ll bear. Yeah. We’ll put that in the show notes as well. Any final thoughts or anything you’d like to add?
Dr. Jessica Myszak [00:18:01]:
No. I just appreciate you you having me out here. I think you’re doing
Lisa Lightner [00:18:05]:
I’m great. Thank you. And this was, I mean, this was really informative. I think that, yeah, I think that a lot of clouds will be lifted for parents because I think when you hear about PDA, you hear parents talking about it, but then not not as many professionals, and they don’t know where to go. And and I think that hopefully a a lot of light bulbs are gonna go off after this episode. Awesome. Great. Thank you.