Sarah Bolen
For those that are joining from our PDA discussion group, welcome back. I know we had a break over the summer. We're very excited to get back to this today. So Marie is going to be discussing.
Today, identifying and assessing a PDA profile will be presenting for about 15 or 20 minutes and then we're going to open it up to discussion. So there will be a chance for questions, comments for everybody to share some of their own experiences and this is really an opportunity for knowledge sharing. So we please encourage.
Everybody to participate if you would like to. I think there's such a wealth of knowledge in this group and we're excited to be able to share that. So well, for those of you who don't know, I'll do a quick intro of Marie. I think most of you probably are familiar with her, but Doctor Marie Hooper is a clinical development.
So.
Psychologist in supervised practice and the founder of flourish health services, a neuro affirming multidisciplinary clinic in Toronto with over 2 decades of experience supporting neurodivergent children, youth and families. Maria is recognized for her work in autism, particularly in girls, women and PDA profiles. And Maria is deeply committed to.
Advancing passionate, identity, affirming care, she offers.
Consultation groups for clinicians and regularly presents on hard to spot neurodivergent profiles across the lifespan. As a late diagnosed autistic and ADHD adult herself, Marie brings both lived experience and clinical insight to her work. She's currently developing Canada's first school for autistic girls, inspired by Limbsfield Grange School in the UK.
It's launched several PDA specific initiatives, including parent retreats and therapeutic support groups. So Maria, I'm sure is thrilled that I just read that entire profile of her, but now I will let her start to take it away here.

Marie Hooper   3:14
Amazing. Thanks so much for joining everyone. So just a couple of things around PDA. And so if you've been to talks with me before, you know that I identify as an autistic woman who also has ADHD, so ADHD.
But what I've learned about myself over, you know, even the last couple of years since I've gotten to know PDA, I actually identify as a PDA or myself. And if I think back to all of my childhood and all the different ways that just showed up in ways that look like defiance or oppositionality or as a.
Hard child or too much. Um, I think about like how much, how much easier my life would have been maybe uh as a kid knowing that this knowing this profile and knowing this about me. Um, what I wanted to just kind of say is one of one of the difficulties with PD as being put on the spot.
And so we see this in assessment and I also wanted to talk a little bit about that, but even in my own questions that people ask me. So I'll ask that you write it in the chat so we have an opportunity to answer in the chat. So I can read it first and then I then I can answer. I will always answer the questions. This is a passion of mine, a special.
Interest people would say, so I'm I I'm happy to answer, but if you could just put it in the chat so I have a minute just to process it and then I can I can go from there. All right. So pathological demand avoidance, awful term imagine being referred to as pathological. So we've you know in the field.
We often say persistent Dr. for autonomy, I think a little bit more affirming, but it's a profile that's understood right now to be under the autism spectrum, although we're getting a lot of questions around whether it's also art and parcel with ADHD, but we're learning, we're learning more about that as we go.
As we know, it's marked by an intense need for autonomy and a heightened sensitivity to everyday demands. Put on your shoes, asking me a question, having to get to school, doing a simple task. You know, it's a heightened sensitivity to everyday demands, especially those that feel that it compromises a person's.
Control or independence. And when we talk about demands, I'm not just talking about like these, the big large tasks, these, these even like really tiny, small expectations. Like I said, like answering a question or joining a group activity or getting ready in the morning can trigger a protective nervous system response. And we call that fight flight.
Freeze or fawn. And I would say, you know, imagine me stopping you right now. You're eating your lunch, you've got the computer off, you've got your mics off. And I, you know, let me see who I see right here, right now. And I called you out and I said, now I'm going to ask you to answer a complex math, math question on the spot.
Right. That's the thing that so many of us feel on these very small expectations. What might look like stubbornness or defiance is actually a super protective strategy, and it's an attempt to preserve, you know, agency and managing overwhelming anxiety, overwhelming anxiety, I should say. And This is why so many of the.
Will be.
Behavior strategies like rewards and consequences. These often fall flat or backfire. These are the parents that come to me and say, well, that doesn't work. We've tried everything. You know, we've tried reward charts and sticker charts and all of these things and none of this works. And in fact, we even get those kids are like, I don't care about your stupid chart like that's, you know, like who really, really.
Push back on those types of things because those in themselves are demands.
The most helpful approaches I think in PDA and we'll talk about this over the, you know the next 11 months that we there we're meeting. But the most helpful approaches are those that reduce the perceived threat, offer collaboration and build trust. So creating flexible relation based, relationship based environments.
Allows the individual to feel safe enough to engage. Yeah, Julia, so persistent drive for autonomy. So this sort of persistent drive to be independent and have make my own choices and.
You know, be, yeah, exactly. Be control of myself and and my own, you know, how I manage in the day-to-day world. So what I want to talk about today is identifying and assessing PDA in a practice. I see lots of psychologists on here. I see parents, I see colleagues, I see friends, I see all kinds of.
People on this call and you know, it's complex. I get lots and lots of kiddos who come to the clinic who have earlier been diagnosed with what we call oppositional defiant disorder or noncompliance or I had written in a report the other day. I almost fell over.
Resistant to therapy due to extreme emotion dysregulation. I almost fell over. I'm just like, I can't imagine writing that in a report about somebody and not understanding how.
Yeah. So why does identification matter so much? Well, we know misdiagnosis is common. Children and adults with PDA are often labeled as ODD, attachment disorder or behavioral problems. And these these lead to the strategies that escalate rather than help, you know, like I said, the ODD kiddos are coming all.
All the time or in and around each four or five, six, I'm getting these profiles that are coming to the clinic. Second, accurate identification informs the right support. So when we know what we're looking at, we can guide schools and families and clinicians towards strategies that reduce the demands and prioritize safety.
And we'll talk a lot about safety and Co regulation and all of those things in the next months to come. And 3rd is the correct recognition. This validates the lived experience of the individual. It helps them understand themselves, feel less isolated and know that there's a framework for how with their understanding.
Yeah, Nikki, do you mind if I come back to that comment? Cause I this is exactly what I want to talk about today. Are you OK if I ask you a couple questions? Would that be OK with you? And feel free to say no, I just you you. This is exactly what I'm talking about. ODD, they come in, meet them. Yep.
They've got some pretty solid social strategies, likely a mechanism for being able to escape at expectations and tasks. And then we take away that ODD diagnosis when we learn that that's autism with a demand avoidance profile. Perfect. That's exactly.
This is exactly what I'm talking about today, Nikki. Thank you so much for that. That's beautiful. And so identify identification unlocks more affirming and effective pathways. So we know that there's core features that characterize this profile, so the most striking.
The most striking part of this is the intense need for autonomy. And this goes, you know, we all want to be in control of our environments. We all want to be in control of things in our day-to-day lives. None of us like being told what to do, but this really goes beyond the typical desire for independence and can show up as a reflexive avoidance.
of demand. So even things that yesterday I enjoyed and I could do today feels like a complete overwhelm. The avoidance itself is anxiety driven and it's often very sophisticated. So many DPDAs use clever social strategies. This one's my favorite humor to resist
Demands or distraction or negotiation. So I've even set myself up here today to say, hey, ask me the questions because I love talking about this thing, but can you do me a favor? Can you let me control it by looking at the chat and you asking the questions in words?
We often see rapid mood shifts in role play and fantasy play as ways of managing anxiety or regaining that control. And finally, PDA is often context dependent, and a person may appear calm and compliant in one setting, but highly avoidant in another, and this variability can be very.
Very confusing to people, but it is truly the hallmark of the profile. And I think that's one of the things as someone who works with a lot of PDAs and their families is, you know, often parents will say things to me like, but they could do it yesterday. Why? Why is it, you know, or things have gone well and then all of a sudden it was this thing that.
They've been doing for two weeks, no problem. And now all of a sudden it's come up as an issue again. When we're assessing PDA, there are some patterns to notice that often stand out. And I think the first thing is the feature. Sorry, the feature is the avoidance of activities that the person actually enjoys.
But only when it's framed as a demand. And this illustrates. I swear it's my most favorite book in all the PDA books, and it's a Lisa Fricker can't not won't. And I truly, truly, truly live by this in my own, my own personal life and with the the kids and the families that I serve.
And it's this idea that avoidance is protective rather than oppositional, right? Kids do well. And in the words of Ross Greene, kids do well if they can, right? They're not truly trying to not go to school. They're not trying to, you know, have get in the have difficulty getting in the classroom.
Just all kinds of like, you know, I hear it all the time. Child's defiant, child's oppositional. They won't do it. They can't, you know, they they just won't do it. And it's really, it's like if you frame it in the the feeling of the child can't do it, it it it it's a little bit of a different lens in looking at in.
In these kiddos. So we also see we sorry, we also see intense responses to everyday requests like far beyond what we'd expect for the task itself. And these are those kiddos. Yeah, exactly. They won't take, they won't take responsibility. Mm-hmm. Tell me more about that. Love hearing that in in reports.
And from teacher feedback or when we I had a as I was saying I had a in a report the other day like extreme emotion dysrelation, non compliant to therapy, resistant to therapy. It's like, well, well like let's talk about this. It's not stubbornness, but really what this is, is nervous system overload.
Holding it all together and then the child doesn't even get in the front door and they're spilling emotion everywhere. Has anyone had that? Has anyone had clients that have said this right? So I mean from asking, for example, this this particular example I think is one of the most common things I see.
And while individuals, kids, adults may appear sociable on the surface, reciprocity often feel shallow or anxious, reflecting the effort to maintain autonomy and reduce threat. When we talk about, sorry, do you mind switching to the next one, Sarah? Thank you. So I think this is where.
Misdiagnosis happens often, so differentiation is critical. I have come to a point, you know, took me a little longer in true PDA form. I took a little bit of a resistance Rd. I opened a practice while I was still on my residency in my in my doctoral training. Did things.
A little bit differently, but took me a little longer to finish my dissertation. So I I had four more years clinical training than a lot of the folks that just came out of their residency and went right into supervised practice. So I've been, you know, working with PDAS probably about four or five years at this point, although even like.
Three to four years ago, I didn't even know it was PDA, didn't even know at the time. What we were seeing is that, you know, kiddos that were coming again with this oppositional defiance sort of profile. And at the time I was being supervised by a couple different supervisors across the settings I was working in and it was at a point where.
5.
Supervisors I had, two supervisors would say, Nope, don't bring me these PDA kids, it's not a thing. And then three supervisors would say, yes, it's absolutely a thing. So I think even in our fields, we're still not sure about how to approach this demand avoidant profile. What is it? How do we get here? How do we assess it? How do we understand it?
Especially because it's not diagnostic here in North America. You know when I talked about this in our our last call in the in the UK there they they do use the term PDA, but here it's not an actual diagnosis in the DSM 5. So compared with ODDPDA avoidance is anxiety base and it's truly.
Truly not an intentional power struggle. And I think with trauma, avoidance may also be present, but it often stems from survival memory rather than autonomy needs. And I think, I think Donna Henderson says it great. And if you know Donna Henderson or if you followed her work, she's one of my idols, I think in.
Saying autism and hard to spot autism. But you know, she'll she'll tell you that kiddos don't know whether it's a tiger chasing them or a puppy golden retriever, right? And I think that that's the difference here. It's like the avoidance is there, but it's really a protective factor, right? They're they're in fight or flight.
And that's how their their response is. They see this as a threat, whatever the demand might be. In autism without PDA, we often see rigidities driven by routines or so sensory needs, and with PDA, so we're really preserving or protecting that autonomy.
Attachment difficulties may look similar too, with controlling or avoidant behaviours, but here the underlying driver truly is relational safety, not demand avoidance. These distinct, but these all these distinctions are really important. They're subtle, but they're vital for accurate formulation.
So on the next page, we're talking a little bit about assessment framework. How many folks here?
Yeah, that's right. So in general, we, the Canadian PDA group, suggest talking about PDA symptoms versus the diagnosis when dealing with professionals. That's correct. So I don't say, I don't say a child meets a PDA profile in my reports. And again, I'm under supervision still for hopefully not much longer.
June.
2026 But for now I use the word. I say that the child meets criteria for autism but is presenting with a demand avoidant profile. And then I give all the reasons why, because again, we want to keep this affirmative and in a neuro affirming report, but also still highlight the real struggles that this keto.
A young adult might have. So from an assessment framework perspective, honestly, we we have a lot of work to do here. But the truth is, is that I'm mostly relying obviously on on interviews and with folks and parents, teachers, kids themselves.
They're willing to chat about or they're able to chat about it, I should say. So when assessing PDA, there's no single test or checklist. Instead, we need to come at this with this holistic framework. And this means gathering that data for the multiple informants, the way we do as psychologists and clinicians who are getting all their information from all these different places, parents, educators, the.
Individuals themselves. We bring together information from all these in different sources, client history, direct observation and self-report. We look closely at triggers and context like how does demand avoidance show up at home, at school or in the community?
It's also useful to examine demand style. So is the person avoiding direct instructions? Are they avoiding indirect suggestions or even their own self-imposed goals? And of course many PDRS also have this co-occurring profile like ADHD or trauma or anxiety.
These layers complicate the picture, which is why holistic formulation is essential.
From a tools and measures perspective, and I'd love to hear from the psychologists in this group or the folks that are doing assessments, because I feel like I would love to learn more. I'm always open to talking about new measures, but for now, what I'm using.
Is I would say depending on depending on the client, I'm often using the MIGDAS over the ADAS. It depends on the situation, depends on the client, depends on the presentation, but often I.
Have issues with these measures because they often will miss a PDA profile. We have clients that will call for an assessment and ask specifically what what type of instruments we're going to be doing when we do an assessment. And I I always say that. So you know it's either the ADAS or the MIGDAS, but it depends again.
Again, depends on the on the on the presentation that we're talking about. I use PDA specific tools called the EDAQ or the EDA 8. The eight I'll use if a family is feeling quite overwhelmed. I'll use the EDAQ if I'm feeling like parent has a bit more capacity and is able to to you know.
Manage a longer questionnaire and really what we need to understand is the word extreme. Again, demand avoidance. Many of us have, I would say all of us at some point have had demand avoidance. It's the extremity. It's how impairing is this avoidance? How much distress is this?
This child in when they're being asked to do something or demands are being placed on them or expectations are being placed on them. I'm really liking the disco. It has a Coventry grid modification, which is really helpful. It's newer. I don't have a lot to say about it other than the fact that.
I I just find that the questions are very pointed and I like again, like I really, really like being able to ask specifically around what those triggers are. Often parents don't know. So it just has a really, really nice grid that you can work through and I I I feel like.
Just from where we are from a diagnostic perspective, I just find it helpful to help me map out what I'm looking for or how this kiddo is meeting criteria for an autism profile, but it's not diagnostic in any way. Donna Henderson has some beautiful questions. If you have not read her book, Is this Autism? She's got.
two-part.
The blue book and the green book. If you're a clinician hearing this, this is where you need to start. Donna Henderson and Sarah Whalen. There is this autism book is incredible. And within those books they have some questions that I pull out in every single assessment that I do here at the clinic.
And many of our clinicians who are on the call who I see some of our psychologists also using those and we've coined it, we've coined it the Donna here at the clinic. So I need the Donna, can someone print me off the Donna and it gets that very, very specific, you know, nuanced profiles, but also those demand avoidance and expect.

VANDERBURG, JULIANA (OUH)   22:15
Hi.

Marie Hooper   22:30
Those expectations being placed on them and ask very specific questions that I find really helpful. I also like the MIGDAS. I like the MIGDAS as a as a tool to be working with kids and using it as an objective tool. But what I really like about the MIGDAS is actually the qualitative questionnaires where parents and individuals.
Can fill out specifically all the things that the ADOS misses, I would say. So really, really helpful around sensory, really, really helpful around what happens when things don't go as planned, what happens when you're being asked to do something. So it's just really, really, really specific and and I like it.
Again, none of these tools are perfect, but I'd like to use them all in together observation differences. That's what's also meant to say the MIGDAS as well. So ADAS and MIGDAS there developmental history theme. So this is really important for me when I'm doing an Intake and developmental Intake sort of at the.
Beginning of an assessment. And that's when I hear words like sabotage, or they make excuses, or they're defiant, or I just don't know what to do with this kiddo anymore. The reward is resistant. Nothing works with them. When I hear those things in in intake, I'm really starting to wonder about potentially.
I might be wondering and querying a PDA profile in their last call that we had, I think in July or maybe August, I can't remember now. I also shared the PDA formulation matrix. I'm not going to go over that today, but I'll put that in the chat because I think it's really, really helpful when you're trying to work through the.
The threshold and and whether you have a child who likely has this meets this meets this threshold.
Hang on, let me just make sure I was. I was riffing there for a moment. I think I might have missed something.
OK, assessment's full of challenges. Yeah, so masking is perhaps the most prominent challenge. I don't know. Put your hand up if you're a clinician who gets parents that call the clinic and say, but they're really good maskers. How do you assess maskers? Yeah, how do you assess maskers? Or how do you know? How are you gonna know?
If they're going to come in here and they're going to be different, how am I, you know, I'm paying all this money for an assessment. And it's like we collect so much data and our clinic, anyone on 7 and under gets a school observation if they're within reason of the clinic. So we see them in their natural environment. So that's part of our assessment process, but.
And I certainly know that that's not feasible for everybody, but we have a pretty big team here and many folks who are trained in behavioral observation, so they'll go out to the school. But I would say masking is the most prominent challenge. Many individuals, especially our AFAB kiddos assigned female at birth, so especially girls, can appear.
Calm and compliant, right? There's that word compliant only to completely unravel at home. And this discrepancy can lead to parent reports or concerns being being dismissed during assessment. How many times have you assessed an autistic child and you've heard the parents say things like?
Or the teacher says things like they don't do this at school. I don't know what you're talking about. What do you mean you're having them assessed for autism, right? And so there's really context variation complicates things further. A child may look different in different environments, which can make it hard to pin down the profile.
We also know there's significant overlap with these other conditions like ADHD and trauma. In my mind, the Venn diagram looks like this. We've got autism, ADHD, OCD and generalized anxiety in those sort of in that Venn diagram. I also would say we could probably add some trauma in there as well.
Another pitfall is relying too heavily on these behavioural checklists, which oversimplify complex profiles. I'll tell you, I always give a Connor's and if I see those ODD elevations in a Connor's 4, but I'm seeing the inattensive or hyperactive ADHD symptoms on the lower side.
I'm wondering about PDA, so that's one of my first cues. When I see defiance or conduct problems on a mask, I'm wondering about PDA. If I'm seeing separation anxiety or somatic symptoms, I'm wondering about PDA. That would be on the mask.
So those are the sort of little hints that I get that, hmm, there's there might be something else going on here.
And of course, we know that these behaviour checklists in general oversimplify complex profiles. And finally, there's the risk of confirmation bias. Once we think PDA, we may interpret all behaviours through the lens, staying open and formulation-based is key.
I think we're good on that one. So let's do a little case study here. So let's walk through an example. So you've got a 10 year old girl who genuinely loves reading at school, describes them as a model student, super, you know, quiet, compliant, compliant, rarely disruptive.
And on the surface, there's no concerns. You get this, you get these questionnaires back and they're all flat, well within as expected range. And at home, however, there's a different story, even when asked to do reading homework, something that they do, something that we would even call a restricted interest or a special interest.
You know, they enjoy it on other days. They resist, stall, or completely refuse. Requests often end in meltdowns with very, very high levels of anxiety, and parents describe feeling like they're walking on eggshells. Just a little anecdote to that. Often when I meet PDA families or when I'm assessing.
For you know, when I'm wondering about PDA and I'm doing an interview, one thing that I I've noticed and I, you know, I haven't read it anywhere, I haven't come across an article, but it's just sort of an anecdotal thing is many of the PDA families I work with do not actually describe use the word.
Let me just start with this again. When I start an interview, parents are often like thrown off because the first thing I say, you know, after I introduce myself is tell me the strengths of your child and they're ready to tell you all the things that are not going well. So I would start off with strengths. Then I go into OK, so how if you know your friend was to come in and explain.
Your child or describe your child. How would they describe your child to me? And it's never anxiety. They never say that it's, you know, levels of anxiety, clinical levels of anxiety. It's often, you know, they might say they're defiant or they're oppositional, stubborn, strong-willed, know what they want, morally focused, those.
Types of things, but anxiety is not usually the 4th, 5th or 6th thing that they use to describe their child, and so it doesn't present as anxiety proper as I call it.
Parents are describing that they're walking on eggshells. The child is able to use humor and distraction to avoid tasks, often changing the subject or turning things into a game. And these strategies can look playful, but underneath they're driven by a strong need to reduce the sense of pressure.
So this case would highlight masking across environments, paradoxical avoidance of enjoyable activities and social strategies of resistance. And all of these are consistent with a PDA profile. Again, very, very watered down, but just sort of a little flavour for you.
Then we've got a contrasting example. This time we've got a 15 year old boy, and this teenager is academically strong and often described as perfectionistic. On paper, their grades look excellent, but they consistently avoid your projects, after school activities, or anything perceived as a demand outside core academics.
Rather than the explosive meltdowns that we expect or shutdowns that we see in autistic profiles, this teen teen's avoidance looks more internalized, right? They often complain of frequent stomach aches. So there's your somatic stuff and headaches, which often lead to leaving class or missing school altogether.
At home, they retreat to their room, shutting down when pressured, and teachers will describe them as anxious but capable. But parents worry about their isolation and these physical symptoms. And so what's important here is that demand avoidance isn't loud. It's very quiet and hidden, but still protective.
This example highlights how PDA can shift with age from externalizing explosive behaviors to very internalized withdrawn physical symptoms. It also shows well shows why careful assessments needed because these presentations are easily mislabeled as generalized anxiety or flat out school refusal.
So what do we take from an assessment like this? Well, first assessment is not about, you know, putting them in that diagnostic box. And often parents are wanting a reason and to understand their child or a lens to look at them from. But we want to build this formulation from a neuro affirming strength space way. We want to understand why avoidance is.
Happening and how it functions for the child. Second, findings need to be shared in a way that makes sense for families and schools. I cannot tell you how many times I have worked with a school or a family who has shared our report with the school and the teacher says something like we're already doing this. I already give the child.
Choice. And it's that's not what we mean. It means shifting the the language away from defiance and towards protection or autonomy needs. I always tell the the educators and the other therapists that I work with that these are not kids that were working from a trauma-informed lens. We are working from a trauma.
Assumed lens. OK, so third, the results guide accommodation. So we're reducing demands where possible, offering flexibility and creating environments that foster autonomy and safety. And these are the interventions that make a difference. So not reward charts or consequences, which often tend to backfire.
We start off well, OK, but I can tell you and any of the behavioral therapists on this call will tell you that this does not end well. And finally, we remember that PDA is not a fixed category. It's a dynamic profile that can look different depending on the context, the stress levels and supports and assessment.
Should lead to evolving, flexible. Yeah, never ends well, exactly. Assessment should lead to evolving, flexible plans, not rigid labels.
With the two examples with the PDA presentations, you know both of them, those are diverse examples, but I would say one of them, you know the most common presentations that are coming to clinic often we get little ones too like grade, you know SK where it's very play-based and all of a sudden now in grade one it's very rule-based and compliance-based. We get a lot.
Grade one students around this time of year, we've already had a couple of calls around PDA.
I think both are rooted in the same Dr. for autonomy, but they look very different in practice and so that's why this formulation is so important and essential and it guides us in understanding the function of the behavior and shaping the right fits and supports.
All right, I think. I think I went longer than I was supposed to, Sarah, but that's what I do as a PDA.

Sarah Bolen   33:52
That's OK. That's OK. I think all of all of that commentary is so important and I think there was lots of speaking to, you know, questions and things like that. So. So now everyone, I think we would love to open this up for discussion. I have a few starting prompts here, but please.
Just know that these are by by no means exhaustive. Sorry, there's just a few more people even coming in right now. So we would love to open it up for you to chime in here on what stood out for you today, but also you know, where do you see these PDA assessment challenges in your own work?
I think this is a place where we can really have lots of discussion here. Yes, Julia, we will be sharing the slides. We'll also have this recording available for everybody to see as well. But please feel free, as Marie said, you can put it in the chat.
Where you see some of these challenges in your own work and then we can we can start there and opening it up. Also, if you have any resources to that you use that you love and find really helpful, please share those as well. I think this is a great opportunity for lots.
Massive resource sharing. So I'll give everybody a second because I know I'm sure people are typing and also feel free if you want here too. No pressure to. I'm not putting any pressure on anybody to put cameras on, but you can feel free if you want to. OK, so.
We have a few comments, Marie. One just so much or you can read them, yeah.

Marie Hooper   35:32
Earth.
Yeah, Stephen, that is exactly it. Exactly what you described. PCIT is not recommended for treatment format of PDA. Often play therapy. If you can get a kiddo in the room that will play with you, doing play therapy is often very helpful. But that's right, none of the PCIT treatment.

Sarah Bolen   35:42
M.

Marie Hooper   35:54
Vacalities are recommended for PDAs, mainly because of the behaviorist sort of background. Julia, yes, so much to do and so much to talk about. And I think again, like, you know, I'm not sure about the, you know, I was trained in a in a time with.
You know, recently, very recently, where psychologists are really, you know, moving away from the ODD and DMDD diagnosis, which doesn't really explain a lot about where the behaviour is coming from. It just talks about that externalising behaviour. So we, you know.
We're not trying to under unpack that a little bit more and so lots of lots of discussion around differential and it doesn't always mean I I should I I wanna say this too is like it doesn't always mean just because a child has a PDA profile means that they meet criteria for an anxiety disorder. So I just wanted to put that out there.
That's not always the case. So I think in our work in terms of treatment recommendations, we're often recommending occupational therapy around interoception, understanding body cues, those sorts of things before we're quick to make an anxiety disorder diagnosis.
Jen, I I can answer this from an anecdotal perspective. So we have at Flourish, we have a psychiatrist on staff who consults for us and she's covered by our provincial healthcare plan that parents will do an assessment. Often parents are coming to us. Things are not going well, right? They're not. They're not coming.
To us to drop a bunch of money because you know things in their lives are going well. So she will Doctor Garcia will often offer a consult with our PDA families and and I'll be honest, from an anecdotal perspective, many, many of our PDAS are on anxiety medications.
Have you seen kids with PANS or PANDAS that flare-ups with increased? This is a really funny question. So have you seen kids with PANS or PANDAS that have flare-ups with increased PDA symptoms? Absolutely. I have yet to find an article. I went actually went digging for this. I'm doing a a school talk.
A couple days. So I went actually digging for this specific information and and and there wasn't a lot to be honest. But it's always a question I ask when I have a PDA or family sitting in front of me when I'm doing an assessment is have there been recent strep throat has the child you know are because we often see the OCD flares.
Symptoms flare up as well around that time. If there's a Panda Panda diagnosis, do you find that the safe and sound protocol helps calm their nervous system? I have heard from OT that this can help. We are currently looking for an occupational therapist at our clinic who does safe and sound protocol. What?
From from what we understand, I know it to be quite helpful. We personally don't have anyone in our clinic currently that does the safe and sound. However, I'm not sure if you've heard of the work of Kelly Mahler. So I'll put this in here. Kelly Mahler, she's a an occupational therapist in.
Did I put it in? Did I put that in the right chat? Yeah. OK. I just wanted to make sure. So Kelly Mahler, she's an occupational therapist. I wanna. I'm not sure where she's out of, but she has this beautiful interoception curriculum bundle that we're now using at the clinic and I would say.
Understanding body cues is probably the most important piece for me for these kiddos, right? Cause they often don't know how they get here, like many of the children that we're working with. And so I would say alongside the safe and sound protocol, you could be really looking into that interoception piece.
OK.
Great topic, Marie. Thank you, Marina. I've had similar experience and it is so important to fully understand the kiddos and this perspective is a very helpful one. I love using Donna Henderson's work as well and have the had the pleasure of speaking with her recently and she spoke about this as well and the importance of understanding it as a subtype of autism.
That's right. So DSM 5TR does not have the PDA profile listed. However, you have to understand it as this child still meets the criteria for autism, still meets all three out of three in social communication, still meets, you know, at least two out of four in restricted and repetitive.
Behaviors still has long standing developmental history that you know suggests A diagnosis. And I think, well, yes, they still meet that criteria. Often that criteria is a little bit more subtle. You may want to be looking for. Let me just put this in here.
Who's the author? Maybe somebody here knows it. I think I've sent it out before. It's the pink flags autism article that I refer to all the time. It's really, really, really helpful because that's those are the kind of traits I'm looking for in my sort of pink flag kiddos that maybe.
Flying under the radar with a PDA profile.
Yeah. And so just to go back to that, the subtype piece is I think, I think it's really important to, you know, that is, that is the piece that many people don't really understand. They think because they just because they see oppositionality in their kiddo, now they think they're autistic.
You know, or a PDA. PDA is not a standalone, it is a diagnostic as I see it. It's a framework to understand this autistic child, if that makes sense. Can you speak to the most difficult DSM 5 autistic autism criteria to meet when a client presents with PDA?
As primary and what your process is. Um.
Here I'm gonna go with A1. I would say A1 is probably the most because those social emotional reciprocity, that piece often I think for me those are the skills that they have and they kind of throw me off.

susan park   41:57
8.

Marie Hooper   42:07
Because they've learned them to get themselves out of and to negotiate being get getting themselves out of demands, right? Learning those skills, learning how to script, learning how to be social, to get themselves away from social demands.
I don't know if that makes sense or not, but I think this is always the one I come back to. I'd say A1 and A3 are the hardest to tease apart when I'm thinking about a demand avoidant profile.
No problem, Rena. Thank you. A light bulb moment for me was how many of the teens I saw in my residency. I know, Monica, this is the thing that I lose sleep over. A light bulb moment for me was how many of the teens I saw in my residency that was 15 years ago who were diagnosed with BPD by the psychiatrist May.
They have actually had PDA and ND. Does this sentence make sense? I literally Dr. Rolden used to supervise me through my doctoral masters and doctoral training and he and I have a Ed Rolden. He's in the West End of the city and he and I have this conversation all the time.
Time and I have 4 kids on my list that I know that we missed. Did not diagnose, didn't diagnose BPD, but didn't make the diagnosis and they were PDA. They were definitely autistic with a PDA profile and I think about them all the time.
Good. You follow Kelly on Instagram. Great. I'm wondering about the pivot point, a pivot point to distinguish when ERP is called for versus relational support, if it's PDA versus anxiety or OCD.
I would love for folks to speak up about this because I'll be honest, I'm not. I don't really like treating OCD. I have a hard time treating. I just don't like it. I don't have a hard time. I just don't like treating OCD and anxiety. I I much prefer the more emotion dysregulation stuff, but.
I think, I think PDA is very, very, very tricky and I think from a play therapy perspective, an attachment perspective, a trauma assumed perspective, I think ERP can be very tricky and you have to have a client that feels safe.
And often, if I'm being completely honest with you, many of these kiddos are, you know, parents are doing parent work and I'm talking about children.

Niki   44:32
Can I speak up to that?

Marie Hooper   44:34
Yeah, sorry.

Niki   44:35
My camera's not working. I have a PDA or an OCD. There's no way to access ERP for the kid till till the PDA is under a calm part. So if you have a child with PDA and needing ERP, you can't even access ERP till they're low demand and their nervous system has reached a flat level. So if they're like all the way up there.
And then burnout, there's no way to access ERP. So the best thing is first to try low demand and that and like to get your child's and every system down before you can go there.

Marie Hooper   45:03
Yeah, that's that. That's that's where I was headed with that. Like making like having that work done first. And you know, I'm not sure who said that, but whoever said that is obviously very well versed in, you know, Ross Greene and you know, Ross, the work of Ross Greene, but also low demand parenting. And if you haven't heard of that, that's certainly.
A big buzzword in the in the the field of PDA right now. Yeah, completely right. Hi. Hi, Nikki. Sorry, I didn't recognize your voice, but thanks for that. No, that's exactly it, right. So you have to make sure you're treating the PDA first by the child feeling safe, the family feeling safe, the family feeling confident.

Niki   45:27
It's Ricky.
OK.

Marie Hooper   45:43
Low demand parenting. The thing is, is that so many of these families come to us and they're in extreme burnout. Kid hasn't been to school for, you know, months, sometimes years. And so we've got to work through that first and then and then you can work through the OCD.
I admire your language when speaking about autism and PDA Marie. Thank you, Eddie. You're lovely. I work with a lot of families who struggle most days to best support kiddos with managing demands and creating safety. The way you speak. Oh, this is a comment. Thank you. The way you speak gives me so many ideas of how I can continue to reframe. Oh, Eddie, you're.
The best Thank you Sarah Rumble, also one of our folks. Understanding body clues and cues and interoception is so important for kids with PDA profiles because they're stressed often shows physically before behavior. That's it. Stomach aches. This is how the the school avoidance starts, right?
I've got a stomach ache. I've got a headache withdrawal that can signal overwhelm. I spoke with my own nurse practitioner this morning about migraines, and we were talking about how many PDAs are seeing her for migraines. So you're welcome. Thank you, Sarah.
As an OT, I agree with all of this, so layered and complex and affirming. Thanks Lynn. That's lovely. You too. The BPD diagnosis are so sad and I have an adult client I am finishing a report with that has a diagnosis of BPD and long term treatment.
Folks, I cannot tell you how many teenagers are coming to us with BPD profiles before, never mind 18, before the age of 16.
So often we meet 5-10 minutes and to me it's pretty clear that we've got an autistic profile, but these are continuously being missed. I don't know if any anyone here has that experience. I don't know if it's just us because we see so many PDAS, but.
Are you seeing this in your own practice? Kiddos coming with much? Yeah, the BPD diagnosis and youth and tweens. Oh, Ben. Yeah, absolutely. Is it an epidemic? Like, is this a thing now or was this always the way and I just didn't know?
Yeah, same experience here with the BPD profile that's so very clearly missed autism. We had a kiddo a few years back and this was probably one of our earlier cases and she had been sort of in and out, you know, of mental health treatment and you know, came to us and she was 14 years old.
And she had, I think, 10 diagnoses, eating disorders and emerging BPD and all of these things that were that came along with it. And she meowed, used cat pronouns, dressed like a cat, talked like a cat.
Had cat figurines. Basically every asked me about my cat, wanted to see pictures of my cat. There there was a lot, a lot of a lot of it was resembling autism. And in in speaking with the parent, we certainly didn't agree.
That there was BPD there, but we felt again, we wouldn't make that diagnosis until 18. But I think, I think that this is a huge mistake that our psychiatrists that are working, you know, in mental health treatment facilities are not trained, right? They're not trained in in identifying autism and so.
Again, lots of kiddos coming to us with this early BPD diagnosis. I can think of mothers of kiddos that I'm seeing for autism assessments who say they have BPD diagnosis. And I often wonder if it's been missed autism for them as well. Yes, yes, Amanda. Oh my gosh, yes. And I can't tell you.
How?
Many people we have that come, I meet their kiddo, we do an assessment for the child and then parents are filling out those questionnaires and I was filling out those questionnaires. Do you do adult assessments? The answer is yes. We've even we even had a grandma in here a few in the summer. So yes, absolutely often.
You know we are wondering about the the parent as well and and and BPD is a part of the profile often with parents or is thought to be part of the profile with parents.
Anything else? Naomi Fisher? Yeah, so Naomi Fisher is amazing. Eliza Fricker. When the Naughty Step makes things worse. Really useful. All anything by Eliza Fricker. She's amazing. All of her drawings are just so incredible. She's a PDA or herself. She's bought a PDA or kiddo.
And she just really distills information down so well. And so I'm always recommending that to my families that I'm working with. And I got a chance to meet her in November when I was in the UK and she's just a lovely, lovely human. OK, I think that's.

Sarah Bolen   50:40
There was one other question. There was one other great question above Marie, which is when a child is not going to school and it feels like everything has been tried, what do you suggest? Do you recommend waiting until the burnout eases before reintroducing school, or is there another approach you found helpful?

Marie Hooper   50:41
Yeah.
Oh my gosh, Nicole, so sorry I missed this question. This is one of the most. This is I think probably my top five FAQ questions I I am dealing with right now from the summer from assessments. I'm dealing with a lot of like IE PS and return back to school stuff with clients right now.
If if you can wait till burnout is over, I think that's the best. Although it's really hard to actually quantify or put a label on when burnout is complete. But I think any parent here that has a PDA or will tell you that trying to.
Have a child return to baseline without burnout, without a sort of a recovery or a 90% recovery from burnout is basically undoing all the work you've already done. I don't know if anyone would agree or argue with me on that. I'd love to love to to hear.
I think This is why. Yeah, sorry, go ahead. Whoever was just going to talk.

Sarah Bolen   52:01
No, no, it was it was just me. You go ahead.

Marie Hooper   52:03
I'm just gonna say I think This is why why so many people think this is like BPD or describe it as walking on egg shells. And I and again we're seeing this with more with younger children usually. But you know we have so many kiddos who again that's where the refusal starts like.
You know, getting to school, getting themselves to school, that's where that's where you start seeing all the difficulty. I think one of the challenges is, is not actually knowing you're in that state until it's too late and you're already like you've already passed the threshold and I think with parents.
This is why this. This is why this profile under this diagnosis of autism can be so difficult because parents never know what to expect, right? One day it's, you know, things day seems better, low demands. The next day it can be anything you did the day before. It can be completely undone or something.
Anything that they were interested in or able to do the day before is not showing. There's no signs of being able to meet that expectation today, and I think that that's what makes this so difficult.

Sarah Bolen   53:14
So thank you so much everybody. I know that there's a few more comments and questions here. Nadine shared, for example, a really wonderful example or if you want to look at that, feel free, please feel free to keep.
Adding comments in the chat, you'll be able to continue to chat here even after our our session is wrapped up and you know please feel free to also send any questions or examples you have for the future. Also as we move forward with this discussion group, if you do have you know specific.

Marie Hooper   53:32
Mm.

Sarah Bolen   53:51
Case studies you want to share or anything like that, please feel free to do that and we can, you know, look at taking a look at some of those in the future as well. Just as we wrap up, I want to share a few upcoming dates. Our next PDA session will be on October 28th.
8th from 12 till 1:00 PM Eastern and then our next for those joining from clinical exchange, our next session will not be next week. We're taking one week off and then we'll be coming back on October 14th where Doctor Ed Walter, I always just call him.
Ed Ed Rolton will be sharing his session on using ACT when adulting feels impossible. So we really hope that everyone will be joining for that as well. Also one call out here too. We have a course that Doctor Hooper along with two of her wonderful.
Colleagues are launching very, very soon called Autism Reframe and we have been working on that. It's been a really incredible passion project and it is just as someone who has been able to see the course in advance, it is just such a wonderful resource. So if you would like to stay informed on that, I've left the link in the chat.
So you can be notified on when that is available and launching. And then just oh, thank you for all of the wonderful comments and love here. Marie, if you want to, if you want to address any of the other things, please feel free. But but really thank you so much to everyone.

Marie Hooper   55:20
Yeah.

Sarah Bolen   55:29
and for participating and sharing here. I think that this is just such a wonderful opportunity to bring so many great minds together.

Marie Hooper   55:36
Yeah, I think I just the only other thing that I think is important for us to have is like would be helpful for us to have is what you're looking to learn in the next session. I'm just kind of going by what are the questions I'm asked the most. But if there's something specific or if you want to bring a case, that would also be pretty cool. We could do a case.

Sarah Bolen   55:47
Mhm.

Marie Hooper   55:56
Consult. I wanna leave it up to the folks who are attending cause it's yeah helpful to to have you. Parent support would be helpful. How to help support parents. You mean Meg like how?
I was gonna ask.

Megan Pittman   56:13
Yeah. How can we support parents when trying to support their children in burnout, trying to identify and help their kids identify, like, what are some clues? What are some body clues that are telling us that we're leading in that direction? And then what are some, like, practical?

Marie Hooper   56:16
Yes.

Megan Pittman   56:33
Strategies to give them as well.

Marie Hooper   56:36
Yeah, parent support. That would be awesome. Any anyone else? I'd love for someone to bring a case like consult as well. I work in early intervention, so often I'm helping parents to filter through info and be open to that. I could bring a case that I'm thinking about where I dose diagnose autism. Oh, Amanda.
You're on.
Are you good? Are you good for our next session?

Dr. Amanda Darroch (she/her)   57:01
All right. Yeah, I just, I was trying to unmute. Yes, I can. Unfortunately, I'm not working with the family anymore and it was in my public funded job, so I can't really go back. But I think it would be helpful for discussion and just there's some things I'm thinking about that I'm like, oh, I wish I would have written it or captured it in a in a different way.

Marie Hooper   57:19
Amanda, this is the thing. I lose sleep over. Honestly, I'm like, how did I not, you know, always hindsight. But like, looking back, I'm like, how did we miss it? How did we not like, oh.

Dr. Amanda Darroch (she/her)   57:20
But.
Yeah, I at least diagnosed autism or even the school. I was at a school meeting. They're like, we don't see the autism, but we see the behavior, the refusal. Now I'm knowing like that demand avoidance. There was also trauma involved too. And so they all thought it was trauma and behavior. And I'm like, he's also autistic, so I.

Sarah Bolen   57:37
Mhm.

Marie Hooper   57:46
Yeah, there's also that, yeah.

Dr. Amanda Darroch (she/her)   57:48
On the 28th I can I can prepare a little bit for that.

Marie Hooper   57:52
Amazing. Oh, this is exciting. Yay, Amanda. OK, thank you.

Dr. Amanda Darroch (she/her)   57:55
Mm.
You're welcome. Thank you so much. This was great.

Marie Hooper   57:59
Yeah, no, no problem. Lynn, you said open to the idea of assessment. I have a 10 year old who was diagnosed ASD and ADHD and have been working with them on toileting as he well. So we just, we just had a case like this as he still has BM in a in a diaper and I'm wondering if it's PDA.
Would you like to talk about your case as well?
Next time on the 28th.
All right. All right. So we've got Lynn and we've got Amanda on the 28 Sarah Bowl. And can we just make sure we have, I think we you have the list of everybody.

Sarah Bolen   58:35
Yeah, I'll reach out to both of you shortly so we can connect about that. And I know Megan Pittman has her has her hand up too. She may have something to share here.

Marie Hooper   58:43
Well, Megan is always so Megan is always so polite. Megan, where are you?

Megan Pittman   58:47
I'm here. I always had it. I had another idea too, like maybe talking about how as clinicians we can handle like the heaviness that comes with working with PDA families and like how sometimes it it it's like an uncomfortable feeling when we don't know if we're making any progress or cause PDA is something.
It's not like working with OCD or anxiety, like you have a clear kind of direction of where you're going and I think PDA is so different. So that was one thing I had. And then also how can we communicate effectively with teachers, schools like.
You know, all these different community platforms that don't have the information about PDA that us as professionals do, how can we make it known to them and support families in those type of discussions? I think that's also really important.

Marie Hooper   59:37
Absolutely, absolutely. I think one of the things that comes up is that we have this little niche here at at our clinic because there's so many of us CPD areas, but you often go to to other places and they've never heard of it or like more rural places that are like, you know, we're barely learning how to assess autism, right? And so we have all this information.
Information. But there's not a lot of people doing this work and so yeah, we definitely have to disseminate that this info.

Megan Pittman   1:00:04
Yeah.

Marie Hooper   1:00:11
And for anyone who's wondering, Megan Pittman is one of our big PDA therapists, so she's amazing. So she's gonna be teaching us.

Sarah Bolen   1:00:12
I know.
So we Lynn and Amanda, I will reach out to you for next time. And also if anybody else has any case studies that they would like to bring to the table, please feel free. You can e-mail me directly. I think most of you have my e-mail address, but I'll also pop it in the chat here.

Megan Pittman   1:00:23
But.

Sarah Bolen   1:00:39
You can feel free to e-mail us and we can take a look at those and and put them together. Even if you want to e-mail me in advance and I can put them into slides etcetera and we can take a look at them in the next few sessions. That would be great. Marie, if you have anything else feel free, but if not we will let everybody go. I know we've gone a few minutes over and that I've also.
I've got a link in the chat for where we will be posting the recording. I will also send the direct link out to everybody who's registered and here today once that is up, so you'll be able to reference back to it and if there are any resources that you're looking for or anything that you'd like to share again.
and please feel free to e-mail me at any time.

Marie Hooper   1:01:22
Amazing. Thanks, everybody.

Sarah Bolen   1:01:22
And thank you. And thank you so, so much for joining everybody. We'll see you very soon. Bye.

Marie Hooper   1:01:28
Have a great day, everyone. See you in a month.
I.