What is Pathological Demand Avoidance in Children? With Dr. Melissa Neff

gender nonconformity kids

This episode is a deep dive into pathological demand avoidance in children (also known as PDA), which is typically defined as a pervasive developmental disorder that falls under the autism spectrum. It’s a label that’s frequently used in the United Kingdom, and it’s often defined as a complicated and misunderstood condition wherein some people have a heightened anxiety response to demands being placed on them. I should note that like oppositional defiance disorder, PDA isn’t universally recognized as a diagnosis, and it’s also a label rooted in controversy.

To talk with us about all of this is friend of the podcast Dr. Melissa Neff, a licensed clinical psychologist who specializes in the assessment of ADHD, depression, anxiety, trauma, nonverbal learning disorder, and autism spectrum disorders, about the diagnostic process. Melissa has been on the show several times before, talking about working with recently diagnosed adults and assessing differently wired kids.

I definitely had a different understanding of and awareness about pathological demand avoidance in children before this conversation, and my hunch is that the way Melissa talks about PDA is differently from preconceived notions you may have, unless it’s something you’ve researched extensively. I’m grateful to share Melissa’s insights and I hope this conversation generates more dialogue that can lead to deeper awareness of the experiences of some of our children so we can better support who they inherently are.

 

About Dr. Melissa Neff

Melissa Neff, Ph.D. is a clinical psychologist in private practice in Missoula, MT. She conducts psychological evaluations for children and adults. She specializes in the assessment of giftedness, ADHD, depression, anxiety, trauma, nonverbal learning disorder, and typical and atypical autism spectrum disorders.

Dr. Neff received her BA with honors from The University Professors Program at Boston University. She received her MA and Ph.D. in Clinical Psychology from The University of Montana and completed her pre-doctoral internship at Spokane Mental Health Center in Spokane, WA. She is the head psychologist at Shodair Hospital in Helena, MT, and a faculty affiliate at University of Montana, where she has taught graduate-level courses on assessment and therapy for the Clinical and School Psychology Ph.D.programs. She has consulted for a range of community agencies in Montana, including the Child Development Center, Full Circle Counseling/Consumer Direct Services, and the FIRST STEP Counseling Center at St. Patrick Hospital. She has recently participated in grant research aimed at equipping schools to treat children with trauma, and in the creation of a video game to help survivors of domestic violence learn coping skills and gain the strength to leave their abusers.

 

Things you’ll learn from this episode

  • How pathological demand avoidance (PDA) is defined
  • Whether or not pathological demand avoidance in children is a real thing
  • How PDA is differentiated from ODD
  • What it means that PDA is “within and beyond” ASD
  • What demand avoidance behaviors look like in children and how parents can assess them
  • The connection between school refusal and PDA
  • How to support kids who are struggling with demand avoidant behaviors

 

Resources mentioned for pathological demand avoidance in children

 

Episode Transcript

Melissa Neff  00:00

The tagline for PDA is “can’t help won’t.” I can’t help it. I won’t do it. So if ODD is I won’t do it. PDA is I want to do it but I can’t right now. I can’t do it right now because the anxiety and the demand is so intense that I can’t have my freedom being pinched by your external demands.

Debbie Reber  00:34

Welcome to Tilt Parenting, a podcast featuring interviews and conversations aimed at inspiring, informing and supporting parents raising differently wired kids. I’m your host Debbie Reber and I’m back with new episodes of the show. I spent the past three weeks getting settled into our lovely little neighborhood in Brooklyn. I’ve been unpacking, purging, purging some more because we seriously downsized our living space, trying to figure out where the best bagels are, figuring out where to park our bikes, finding new running routes. So it’s been a little chaotic. It’s been a lot, but I am back and I am so ready to hit the ground running. And on a little side note, I just wanted to share that today. The day this episode comes out is Asher’s first day at school. If you’re a longtime listener of the podcast, you know that I have been homeschooling him for the past six years. So his last year in school was second grade and he is now starting ninth grade. He’s starting high school today at a school here in Brooklyn. It’s really blowing my mind so I’m hoping it’s going really well for him. I hope back to school has been smooth and not too stressful or dramatic for everyone out there listening. A couple of quick things. Next week I will be sending out a special time sensitive invitation for the new program I’m launching in October called the differently wired club. So if you want to be in the loop on that, sign up for the interest list at tiltparenting.com/club. I’ve also got a great lineup for upcoming podcast episodes where we’ll be talking about some new themes, themes I haven’t yet covered on this show and topics that I get asked a lot about, including a great episode on challenging sibling dynamics. I’ve one coming up on what it’s like to grow up with dyspraxia. We’ll be doing an episode on anxiety and teenagers and much, much more. 

Debbie Reber  02:35

And of course, today I’m also bringing a new topic to the show. And that topic is pathological demand avoidance or PDA. It’s typically defined as a pervasive developmental disorder that falls under the autism spectrum. So PDA is a label that seems to be much more frequently used in the United Kingdom. It’s often defined as a complicated and often misunderstood condition, where some people have a heightened anxiety response to demands being placed on them. And I should also note that like oppositional defiance disorder, which we’ve talked about in a number of episodes, is that a real thing? Is it a label that shouldn’t exist, PDA isn’t universally recognized as a diagnosis, and it is also a label that’s rooted in controversy. It’s something I see a lot about, and I see people talking about it on listservs and groups that I’m in. And so I’ve asked a friend of the podcast, Dr. Melissa Neff, to come on the show and talk with us about it. Melissa is a licensed clinical psychologist, and she specializes in the assessment of ADHD, depression, anxiety, trauma, nonverbal learning disorder and autism spectrum disorders. And Melissa has been on the show a couple of times before talking about working with recently diagnosed adults, and also talking about the assessment process for differently wired kids. If you want to listen to those episodes, you can find links on the show notes page for this one at tilt parenting comm slash session 173. So I will just say that I definitely had a different understanding and awareness about pathological demand avoidance before this conversation. And my hunch is that the way that Melissa talks about it is probably different from the ideas you have for what it is. I’m grateful to share Melissa’s insights. And I hope that this conversation generates more dialogue that ultimately can lead to deeper awareness of the experiences of some of our kids so we can better support who they inherently are. Lastly, I wanted to share that I will be speaking in a few cities in the US and Canada this fall. So I will be keynoting the shift your thinking summit in Toronto. That’s on Sunday, September 29. I’m doing a special evening at the Evergreen school in Seattle on Thursday, October 10. If you’re in the LA area, I will be spending the weekend of October 11, at Bridges Academy, where I will be participating in the 2019 2E symposium. And then lastly, I’m keynoting, the Twice Exceptional Children’s Advocacy: Building 2E Awareness and Community Conference in New York on Friday, November 8. So I’m really excited to get the chance to connect with more of you. And if you are in any of those cities in Toronto, or the LA area, Seattle or New York, and you want to learn more about those events, you can go to tiltparenting.com/events, or go to my author website, debbiereber.com/events, and you’ll find links with more information for those conferences and events. I would love to see you there. Thank you so much. And now here is my conversation with Dr. Melissa Neff about pathological demand avoidance. Hey, Melissa, welcome back to the podcast. Thanks, Debbie. So good to be back. You’re, at this point, one of our most regular guests. So that’s kind of cool. I love it. And well, you have so much to share. And I’m super excited about today’s conversation. And we have a lot to cover. But because I know there are going to be people listening to this episode who maybe haven’t heard the other episodes that you’ve been on? Would you just take a few minutes to just introduce yourself? Tell us a little bit about what you do?

Melissa Neff  06:28

Sure, sure. My name is Dr. Melissa Neff, and I am a clinical psychologist in Missoula, Montana. And I have a private practice where I do psychological testing for children and adults. And I specialize in I would say at this point, neuro diverse kids and work with a lot of kids that are on the autism spectrum and variations thereof, including, you know, nonverbal learning disorder and PDA, which we’re going to talk about today. So that is what I do.

Debbie Reber  07:02

Very cool. So and yes, PDA, so pathological demand avoidance. I will be honest, this is kind of new territory. For me. People have asked me to cover this on the show. I’m certainly familiar with the term I’ve heard it bantered about, but I don’t know much about it. So I’m just excited to hear what you have to share. So could you start by telling us what pathological demand avoidance is? Is there even a formal definition of it?

Melissa Neff  07:34

Yeah, there are several definitions out there. And then there’s some sort of informal definitions and pathological demand avoidance, I have to be honest, I feel like it sounds like a terrible name. It’s one of those psychological quote unquote disorders like borderline personality that just doesn’t really maybe it does describe the issues, but it just sounds so negative. So I will try my best to explain it in my understanding and the way that I came across PDA. And my practice is by accident, because I had a client come in about five years ago, and I just couldn’t figure out what was going on with him. So I had to do a really deep dig into the research to find out that there is a atypical presentation and profile of autism called PDA that we don’t really talk about in the United States. And that’s not in the DSM as a diagnosis, it would have been considered a diagnosis. Under the old DSM, the DSM 4 under PDD-NOS are a sort of alternative autism or atypical autism. But my understanding of the definition of PDA, and what I go with in my practice is that PDA is a subtype of autism, that in some ways, is high functioning, and in some ways as low functioning, that’s categorized by people who resist and avoid ordinary demands of daily life, because they cause intense amounts of anxiety and pressure. And these have folks that are on the autism spectrum, but in some ways, their social communication skills are stronger, and they’re better at mimicking and masking and acting neurotypical. These kids tend to make actually really good eye contact and to have some pretty good, superficial social, conversational strategies. They might be more reciprocal than a child with Asperger’s, for example, like ask how you’re doing, come in and be able to do some social niceties. But when you dig, you know, when you try to get deeper in social interactions, these folks tend to actually lack depth in their understanding of sort of how to maintain that interaction. So those are some of the characteristics and And these kids are also a little bit different than your typical sort of Asperger’s kids in the sense that because they’re a little more socially savvy, they tend to use social manipulation pretty well. So these kids actually are pretty good at deceiving or conning or lying, or making really good excuses that make them not seem quite as odd, as potentially some people with autism may seem. But then when they are placed in situations where they’re feeling under a demand or under pressure, they display the most outrageous, impulsive dysregulated meltdowns that you’ve ever seen. And they often get misdiagnosed then like with the mood disorders, such as bipolar disorder, because they will often have these intense rages in response to ordinary demands. 

Debbie Reber  10:58

Wow. So just to take a big step back, so that I am sure that I understand this clearly, it is a subtype of autism. And it’s not part of the current DSM. Is it something that someone might have and not get an autism diagnosis, or someone might have an autism diagnosis that doesn’t touch upon that? Or I guess what I’m wondering, can it exist outside the realm of autism? Or is it always a subset?

Melissa Neff  11:29

That’s a great question. And I’m not sure that I know the answer to that, what I can say is that, and this may be gets into sort of how this is different than something like Oppositional Defiant Disorder, or an anxiety disorder, or a mood disorder. But my understanding is that these folks are always under the autism spectrum in terms of being not neurotypical. So they’re very, they’re neuro diverse, but kind of leading back to your first question. They’re often not recognized, or they’re Miss diagnosed, or maybe they don’t meet the cutoff for traditional level one, autism, which is what we used to call Asperger’s. Now, now we talk about diagnoses in a level system in terms of levels of impairment, with you know, sort of level one being Asperger’s and, and so there’s no place in the current DSM that recognizes a PDA profile. But if you are looking at individuals on the basis of let’s say, they come in for an evaluation, and you’re looking at the specific characteristics of what’s going on with them, oftentimes, they don’t quite meet the criteria for Asperger’s, or they do but there’s something about them, that is not typical of what you would see with somebody that is diagnosed on the spectrum, but it feels more like they’re on the spectrum than they’re not. Does that make sense? It does.

Debbie Reber  13:02

So can you give us some examples of the types of situations that someone with PDA would resist? You know, I’m just just so we have kind of a frame of reference, because, yeah, we did an episode recently, where we did talk about oppositional defiance disorder, I know that for a lot of differently wired kids, the trigger can be having demands placed on them. So what would differentiate PDA from a typical kind of resistance to someone placing demands on them?

Melissa Neff  13:37

That’s a really good question. Um, I’ll try to answer as concisely as I can, because I think there’s a lot of pieces in there. Yeah, so the typical PDA client, you know, the way that I’ve come to recognize folks with PDA in my practice is that there are sort of two kind of red flags that come up. For me, that makes me wonder about PDA when folks come into the office, one, and these actually kind of depend on the age of the person that’s being assessed. So let’s say I’m assessing a 10 year old child, and then I’m also assessing an 18 year old, so a 10 year old child with a typical PDA presentation is probably going to come in with ou know, not a lot of reports of typical quote unquote, autistic like behaviors where you’re going to hear that these kids maybe have one or two friends, they love to do roleplay and pretend and engage in a lot of, you know, sort of superficial social context. So one of the things that we’re looking for with typical autism spectrum disorders is can the child and does the child make eye contact? Do they, you know, answer when you talk back to them? Kids with PDA often have, like I said, pretty good surface level social skills, so they kind of do seem as if they’re on the spectrum when you initially meet them, but but typically the behavioral piece will look something like, my child is gifted and extremely intelligent and spends five hours a night reading books, but won’t go to school in the morning. But it’s not just that they won’t go to school in the morning, it’s that in first grade, it started out as you know, I’m gonna have a tummy ache, I have a tummy ache every month or so. And then, you know, as the school year gets on, and the demands of the school year Go on, and the parent may not even identify that it’s the demands of the school year, they’ll just say no, as the school year goes on, you know, he just kept saying, you know, his stomach hurts. So we went to a doctor, and we got him checked out for food allergies, but everything’s fine. And then, you know, he did okay, over the summer. And by second grade, he just refused to go to school, and he would sit in the car. And he would say he wanted to go to school. And he would get in the car, and he would have one foot out the door of the car with a car door open. And he would start crying, and just sack I can’t, and he would freeze and he couldn’t go in. And then Okay, so we get a 504 plan or an IEP in place. And then we have somebody from the school come in and greet him and help him come into the school, and then he gets acclimated to the school year. And again, then we start to have something going on, as the school year progresses, where maybe he gets used to going to school, but then at home, it becomes a three hour chore to brush his teeth, or yesterday, he could brush his teeth. And now all of a sudden, he’s in this phase where he won’t brush his teeth. And it doesn’t necessarily seem to be a sensory issue, you know, of the toothbrush touching his mouth. It’s just he, he doesn’t seem like he wants to do it. And he gets really mad and he has these rages and, and then he’ll tell these elaborate stories to try to get out of brushing his teeth. Like, I want to tell you what happened with this kid at school today. Or he’ll go get his Batman cape and start acting out a scene from Batman that has nothing to do of course with the brushing of the teeth. Or he you know, he may get on the ground, kicking and screaming until he’s red in the face pulling out his hair, so he doesn’t have to brush his teeth. And that’s I guess what I’m getting at in terms of the extremeness of this diagnosis, these kids go from zero to 200 very quickly, which is different usually than ODD. And once they are sort of bubbling over, they can’t stop. And they engage in these outrageous, either avoidance tactics of avoiding doing the task, or distraction techniques, or the you know, all these things just and the parents just sitting there going. I don’t understand…you brushed your teeth yesterday. Why is it a three hour fit today? And maybe nothing happened differently except that inside the child’s head, brushing the teeth today felt like too much pressure? Wow. Yeah. So that’s one example. So I often see these kids, because they tend to be school refusers, Debbie, they tend to be, these are the kids that most often present clinically to my office because their parents don’t know how to get them to go to school, or to participate in school, despite often being very bright. And then this sort of other presentation that I’ve seen with an older person with PDA, maybe a young adult might be, again, some of the school refusal issues that maybe were subtle, or maybe were that big of a deal when they were a child, but now it is. I’m going to try college, but I can’t leave my room for three weeks at a time, my dorm room, but I’m not going to tell my parents that I’m just going to not answer the phone. And so those avoidance strategies and resistance strategies become sometimes ghosting and complete avoidance of going to class, answering the phone, eating food, sometimes for people with PDA, because it feels like so much of a demand and a choice to decide what to eat. So these are the folks that end up if they’ve made it through school, they don’t often have a direction in young adulthood. And these are the kids that sometimes end up saying, I don’t ever want to leave my parents house. And they often don’t display a lot of initiative to move towards independence or or adulthood because they don’t. They lack a deeper sense of what they want and who they are. They tend to mimic and pretend and so they say oh My peers are going to college, I’m going to go to college, but then they get to college and something doesn’t quite click, or they can’t find the motivation to meet the demands on a regular basis. And then they kind of drop out of life. And that’s when they come to my office. And the parents are like, what are we gonna do with my child who’s 22 that lives in the basement but doesn’t want to participate in life, or even choose his own meals?

Debbie Reber  20:28

Wow. So, this is just all new to me. I mean, as you first started describing the scenario with the 10 year old, you know, that sounds to me initially, like anxiety. And I imagine that’s what a lot of people think this is right, heightened anxiety surrounding certain situations. Yes. And also, I think, in my head, I was kind of, I don’t know, making it mean more like an odd like, I’m, you know, I just am gonna push back on everything. But this is not that this is like, the sensory response, like a full on shutdown. So I can understand why it’s so complicated and, and how it could get kind of tangled up with different types of you know, mood disorders or bipolar, you know, how to kind of tease that out. So, I guess I’d love to know about PVA as a, as a disorder as a, something new that we need to kind of introduce it more into the conversation, because I imagine there are so many kids and adults who are misdiagnosed might be on meds that aren’t going to help them or whatever. So what’s the status of PDA in the discourse? And where do you see that going?

Melissa Neff  21:43

I think that I heard somewhere. And it may have been you that mentioned in another conversation of PDA being mistaken maybe for an attachment issue, where the child goes into these rages and doesn’t want to brush their teeth, because they don’t want to do it for the parents. But my experience has actually been that these kids are non neurotypical, and they are wired in an autistic way, which means that they are more sensory sensitive than a neurotypical person. And so they’re going to be more easily pushed into fight flight or freeze than the typical person who’s not neurodiverse. But beyond that, what I have seen with parents of kids with PDA is that they have tried everything. And these are parents that walk on eggshells around their kids and try and try to change the entire environment to make things more comfortable for their child and often have very strong connections to the to the extent that they can with a child that doesn’t have maybe quite as much social communicative depth and in their identities, so so I don’t see it as an attachment issue. I think it can easily get Miss mistaken as Oppositional Defiant Disorder. And I’ve had several therapists asked me that question where I’ve diagnosed a kid with PDA and sent them on to a local therapist, and and the therapist says, Okay, what, what do I do with this, and I send them some resources, and you know, of which there are a lot of resources, but there’s not enough resources. And so I think that’s a piece that this PDA community, which mostly exists in the UK, I think I’m one of the only people that I know of, at least in the US that is using this diagnosis and understanding people through this lens. And I hope that others will join me in trying to be a piece of that so that we can build more of a community here. But what I feel like the differences between ODD and PDA is that kids with ODD won’t comply with your requests. They don’t want to write. They know what the pecking order is. They know who the adult is. They know what they’re supposed to do. And they don’t want to do it. Or if you look at the alternative explanation of odd as kind of going into fight or flight. Maybe they’re too stressed to do it. Or maybe they don’t, you know, there’s other types of odd where kids are very punitive and hostile towards adults because there’s not always a strong relationship with the parent and the child. And so you’ll see a lot of oppositional behavior when kids are trying to stick it to their parents and be angry at their parents and show them how mad they are. Kids with PDA, the tagline for PDA? It’s really interesting. The tagline for PDA is can’t help. Won’t. I can’t help it. I won’t do it. So if ODD is I won’t do it. PDA is what I want to do it. But I can’t right now. I can’t do it right Now because the anxiety and the demand is so intense that I can’t have my freedom be impinged by your external demands. So there’s this fantastic YouTuber who just wrote a book in the UK. And his name is Harry Thompson. And he just wrote a book on PDA. And he, he said, maybe a better word for PDA would be pathologically free spirited. Right? Because the idea is that I can’t help it, I don’t want to do that right now. It’s not that I don’t want to comply, it’s not that I’m trying to stick it to you. It’s that I have this sensory overload in my body. And I just can’t, it’s like a freeze response. And then there’s sort of a, there’s almost like a trickery to it have sort of a playfulness of let’s see how far I can push it. And Harry has talked about in his book, and on his videos on YouTube, which I am going to recommend to you, for your viewers and your listeners, that it’s almost like a Jekyll and Hyde kind of thing where when the PDA takes over, it’s like a bubbling over inside the body that just takes over. And the child isn’t naughty, but acts naughty, because it’s almost like they can’t help it, they have to be in control in that moment, for whatever that means for them. So it is different than ODD, which to me is usually Yes, you see ODD with non neurotypical kids. But you see ODD a lot with neurotypical kids who just don’t want to follow the rules, or you know, don’t have a good enough relationship that they feel like they’re always in trouble. And they’re always having to do things. So there’s not enough reward in them doing it, these kids want to go to school, these kids want to have a job, these kids want to behave, and they just can’t.

Debbie Reber  27:06

So what kind of support then, or therapy or accommodations can help these kids, again, with, I know that with borderline personality disorder, that is one of those really complicated disorders that can be really hard to treat and support. And bipolar tends to be more of a medical and therapy response. So what do we do for these kids?

Melissa Neff  27:31

Excellent question. You know, my understanding and the best success that I have seen is that letting these kiddos or adults be in control when they can when it’s appropriate. And really changing the environment to help them feel more of a sense of control over the environment. So reducing demands. So that’s a tricky thing, because you don’t want to fully reduce demands on people because then if you have no expectations for them, they may, you know, not learn that they have to work towards things. But if you kind of take this sensory perspective, or sort of a window of tolerance perspective of when they’re in a place of tolerance, they can do well, and they will do well, which is very similar to Ross Greene’s model. Children do well when they can and PDA kids are exactly like that they do well, when they can. What the parent I think first has to recognize is can my child do better right now? Can my child do this right now? Can they go into school, or is interacting at this level of social communication? Too hard because these kids when they go to school, they are mimicking and masking social skills and it’s exhausting. And part of why they avoid school is because they come home from school and then they want to hide in the room for seven hours because they’re so overloaded from the social demands. Oftentimes, these are introverts, not always. So you have to really be aware of their window of tolerance, are they in a place where they can do more? So one of the books I’m going to recommend on your website is called understanding PDA. And it’s, it’s kind of by, you know, some of the first psychologists who were the ones to recognize this disorder in the UK, and they talk about asking if the child goes to school and ideally, these are the kiddos, unfortunately, or fortunately, that ended up in an alternative school setting a lot of time in order to continue in school. And usually what they’ll do is and there are actually schools in the UK for kids with PDA, which is incredible, and I want to go learn all about them. But my understanding is that what you would do with a child like this is when they come in in the morning. I’ll hand them sort of an abbreviated list of the tasks that they might do that day and say, What do you feel you can do today?” And so putting it on that child, so you’re not placing the pressure to say, we’re going to do math now for 45 minutes, but you have a list of four things that they can do. What do you feel you can do today? Well, I have my math problems, I feel that I can only do the multiplication, but I can’t do the division. Okay, so let’s do that. So finding what that window of tolerance is working within it, giving the child as much control as is appropriate for their age, because having that control reduces their anxiety. The other way to do this is because these kids are on the spectrum, so they do have obsessive interests. And you can incorporate those interests into learning in the same way you would with any other child on the spectrum. So if you’re not willing to do anything on this list today, what are you willing to do that involves Batman and Robin? So often, these kids, instead of actually wanting to interact in a direct social way, they will go into these intensive role plays, where they pretend that they’re Batman? And so parents getting in there and pretending with them and getting into their world? And is Batman able to clean his room today? I wonder if Batman is, instead of saying Batman better clean his room, or he’s not getting dessert, right? So it’s often about the way that you’re phrasing demands, too. And what you want to do, especially with younger kids with PDA, who maybe aren’t as savvy to what you’re doing is, disguise those demands, and make it fun. Like, let’s say the child’s name is Penny, what do you think Penny is willing to do today and kind of making it a little more…the character and Penny can decide what her role is going to be today. So it’s definitely collaborative, it definitely involves a lot of flexibility. It involves a strong relationship, the parent, like I said, the parents that I have worked with that have these kiddos are superheroes, in my opinion, because they have worked so hard to try to make their child feel less anxious and feel comfortable. So being aware of those things, reducing sensory demands, giving them choices, but not too many. Those are kind of the big recommendations for how to manage sort of the daily issues with PDA.

Debbie Reber  32:38

Well, you mentioned school refusal, and that’s something again, I hear a lot from parents who are in that situation, their child is in a school refusal mode. And often what they do is just if they can, they might pull them out for the rest of the year, or pull them out for a few months to try to kind of get them reset before going back in. But do you have any advice for parents on specific things they could try? Or next steps if their child is in school refusal mode?

Melissa Neff  33:07

Yeah, I mean, I think if you’re in a public school setting, you know, you definitely would want to try to get an accommodation if they’re eligible for special education through an IEP or if they’re eligible for accommodations through a 504 plan. The problem is right so that we don’t recognize PDA and the DSM, and neither do the school systems. So sometimes there’s these amazing school systems that say, Hey, we’re really open minded, let’s hear about PDA and how we can accommodate this kid. But probably more often than not, that’s not going to be the qualifying diagnosis that they’re going to accept or be able to serve the child under due to their own funding specifications. So that’s tricky, because let’s say they are diagnosed with Asperger’s disorder, or level one Autism Spectrum Disorder with a PDA profile, because they do meet criteria for Asperger’s, then they could qualify under an IEP. And then you could specify if the school is open to it, you could specify Okay, we’re going to meet the child outside at the car every morning, and we’re going to create a routine that they can be part of where they’re going to start the day and the guidance counselor’s office. And when they feel ready, then they’re going to move to class. And we’re going to do a little bit of where we let the curriculum be more flexible or they can go to the sensory room when they need to. And sometimes for a kid with PDA, that will work. What’s fascinating is that there are I think there’s a statistic out there that says that’s something like 70% of the school refusers that will not go to school probably have PDA or it may be that the kids who have PDA 70% of them are not actively in school at any given time. But those are very, very highly correlated things. So that’s the public school route. But you do have a subset of people with PDA, who actually only act out in one setting. So they may not even act out at school, they may act out only at home, and be complete angels at school because they’re holding it together all day. And it may not manifest until college, or when they have to get a job. So there are people with PDA who are resilient enough to just keep going and doing it. Most of them, though, tend to… it’s really tough for them. And they tend to be school refusers. So if public school doesn’t work, I think you may need to look at a homeschool or an alternative school. And a school where the demands are based more in the child’s interests, and it’s more autodidactic or the child is choosing their curriculum or choosing what to learn about or choosing the order in which they do things these kids tend to do best when they can create, or when a parent can create the curriculum for them. And what’s interesting about them versus maybe a child with Asperger’s is that they don’t tend to do very well with routine because that’s a demand. And so let’s say a parent creates a routine for them. Well, that’s a demand that they’re expected to follow. And, and that creates intense anxiety depending on the day and the mood and the window of tolerance. But let’s say that they can meet the demand, they may be able to do it. So it really just depends. It really depends. But you have to because these kids need novelty, you may have to continue to get creative about what works for them. Going back to Harry Thompson and his story. In the UK, he talks in his novel, or in his memoir about going to several different schools and how he does really well for periods of time and then does his outrageous behavior, or avoidance behavior and gets kicked out or decides he doesn’t want to go anymore, and then finds the next place that feels right to him. And that’s very, very tough on families, very tough on families. But that tends to be more of, you’ve got to be creative with these kiddos.

Debbie Reber  37:25

It’s tough. As you’re talking about this, I also can’t help but think that there are parents who are facing judgment and misunderstanding from others. Because we know this with kids who have anxiety or a lot of these, you know, quote unquote, invisible differences, there isn’t a lot of understanding. And so I can imagine with demand avoidance behaviors that if people might just not buy into it at all. I’m just wondering if you have any thoughts or verbiage for parents to know how to respond to people who don’t get it or question What’s going on?

Melissa Neff  38:05

I think that’s such an important point, Debbie, because that is exactly what happens is that by the time these parents get to me, sometimes they’ve had two evaluations that maybe have pieces of the puzzle, or sometimes they have just decided it’s bipolar, and their kid is on three different medications, or sometimes their kids already out of school and refuses to go back. And these parents are exhausted, and have tried so many things, and people are absolutely judging them. And it’s awful. And I think that probably the best advice I can give these parents is to find somebody who believes you. And I will say that there are professionals out there who think that PDA is bunk, because it’s not in the DSM. It’s not legitimate ties by the American Psychiatric Association. But it’s not something that can be treated psychiatrically with medication, and it is documented in the research literature. And there are successful programs in other countries where these kiddos are getting help and thriving. So I would just say to these parents, do as much research as you can and be okay with trusting your gut and knowing that you know your child. And it is important to seek support. And it is important to seek professional help. But if professionals judge you or say this is a parenting failure, or this is an attachment issue. And they’re not willing to see that the child is not neurotypical and that the PDA profile is actually something that’s dominating the household and this does affect everybody in the household. This is very tough on siblings, is very tough on marriages. And so I think the best thing that parents can do is to be nice to themselves, support each other, support themselves, trust their gut, try to find treatment professionals who are open minded and willing to look into this and to research this and to learn about it. And what they will find is if they find the right treatment professional, who is open minded, and will use the correct techniques that work with PDA, the child will get better, the child will thrive, their anxiety will decrease, they will show more initiative, and they will develop in healthier ways.

Debbie Reber  40:26

So for parents who are listening, you’ve already shared some great resources. And I will list all of them on the show notes page. But any other resources you’d recommend parents checkout? Or any last thoughts before we say goodbye?

Melissa Neff  40:40

Yeah, you know, I think, just as we’re talking, I’m thinking that one of the things I didn’t list in the resources was that there are a couple Facebook groups for parents that have kids with PDA and their private groups. And so you have to ask for permission to join. And I think you may have to explain why you think you know why you want to be part of the group, but I’m part of some of those groups. And there’s some great articles coming out there. And that is a great forum for parents to confidentially talk with each other. And to know that they’re not crazy. And there’s some, there’s some folks on the Plan B Facebook site, which is one of Ross Greene’s sort of fan sites on Facebook, where parents get together and talk about his collaborative problem solving model and how they’re using it with their kids. And that also seems to be a place where parents can talk with each other without judgment. And I’ve seen some folks talk about PDA in that forum as well. So yeah, and the other thing is, we just need to get all these people to come from the UK and train us and how to, and that’s one of my goals is to go out there and do some of that training and learn more, so I can help people more as well. But I think those resources that I gave you are a pretty comprehensive list. There’s some excellent blogs, there’s some great websites, like I said, there’s some YouTube sites popping up. And so this is becoming something that in the last five years since I’ve learned about it by accident through my clients, this is growing knowledge about this is growing in support around this as growing, but it’s going to be a fight kind of like this community is right to be recognized and to be heard, and to be supported in the right ways.

Debbie Reber  42:18

Well, I’m excited that we are spreading the word through this episode. And yeah, listeners, Melissa gave me a really lovely list of a lot of resources. So definitely check out the show notes page for this episode. To connect with that, including the Facebook groups, I’m in some of them as well. So um, so so many resources for parents to tap into. So, Melissa, once again, fascinating conversation, I learned something every time that we talk. And I’m just really excited to be getting the word out about this. And I look forward to the feedback, I have a feeling we’ll get lots of it. And this will be one of those episodes that gets spread far and wide. So thank you for sharing. And when you go to the UK, and you kind of dive into this more, please come back on the show and share more with us.

Melissa Neff  43:09

I would love to I really do want to and it would be so awesome to be able to come back to the US and train other professionals and train parents and how to work more with this population. Because I think that they’re being wrongly served and misdiagnosed a lot of the time. And thank you for your kind words, I just feel so grateful to be part of this community in this conversation and to be included. And thank you for being willing to hear about PDA and spreading this to your listeners because I am just hopeful that people are going to listen to this and say, Oh my gosh, I know that sounds like my kid or therapists who say oh my gosh, I have a client like that. And I just need to get the word out so that we can create more resources.

Debbie Reber  43:58

You’ve been listening to the Tilt Parenting Podcast. For the show notes for this episode, where you can download the transcript for this episode, as well as find links for all the resources Melissa and I discussed, visit tiltparenting.com/session 173. If you want to be a part of the Tilt Parenting community and get my short weekly emails where I share resources, relevant news articles and a little personal message for me, you can sign up at tilparenting.com. And when you sign up at the bottom of any page on my website, you’ll get the first chapter of my book differently wired. If you get a lot out of this podcast and you’d like to help support this production, you can do so for as little as the price of a cup of coffee once a month. It’s easy. I promise it is pain free and I would be grateful for the help. To learn more, just go to patreon.com/tiltparenting. Lastly, don’t forget to leave a rating or review for Tilt Parenting on iTunes. If you haven’t done so already, those ratings and reviews help keep this podcast visible. And that helps draw more audience members to the show. So thank you so much for considering. And that’s all for this week. Thanks again for listening. For more information on to parenting visit www.tiltparenting.com

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