OCD & Neurodiversity: From Rigidity to Resilience

Dr. Amanda Fialk: Let’s get started. We’re so excited to be here today in collaboration with Rogers Behavioral Health and we will be discussing a challenge that many clinicians face which is how to differentiate OCD symptoms from neurodivergent presentations particularly autism and ASD. My name is Dr. Amanda Fialk. I use she/her pronouns. I am a partner and Chief Clinical Officer at The Dorm which is an IOP and PHP treatment community for young adults with locations in both Washington DC and New York City.

I am really excited to be here today discussing the treatment of OCD and neurodivergent populations. This is an area that can prove to be really challenging from intake throughout the treatment process and a treatment topic that certainly hits home for us as 49% of our population identify as neurodiverse. We at The Dorm define neurodiversity as an identity that affirms those with natural variation in brain function, including experiencing differences in attention and learning and communication and behavior. We also know firsthand the importance of treating neurodivergence as a strength rather than as a limitation.

Just recently we were working with a client diagnosed with ASD, OCD and anxiety and they had been struggling with pretty severe OCD related avoidance behavior, unable to leave their house, spending hours on ruminations, checking and nighttime routines. And what really made the difference was recognizing how their autism impacted their emotion regulation. And where this client once sought out their parents to help with regulation, they learned through treatment how to use self-regulating skills and how to lean into their clinical team. And this is just one minor example of how understanding the intersection of diagnosis can really help to unlock progress in treatment that might have previously felt somewhat out of reach.

So we are really grateful to be here today with Dr. Martin Franklin from Rogers Behavioral Health who is going to share his extensive research into best practices for treating OCD in neurodivergent clients.

Dr. Franklin is an associate professor of clinical psychology and psychiatry at the University of Pennsylvania School of Medicine, an executive clinical director of OCD and anxiety services at Rogers Behavioral Health where he has oversight of OCD and anxiety services systemwide. He’s an internationally recognized expert in assessment and cognitive behavioral treatment of OCD. Dr. Franklin has spent over three decades improving the care of individuals with obsessive-compulsive and related disorders across the developmental spectrum, publishing over 265 articles, chapters, and books on these topics.

We are thrilled to be learning from him today. And with that, I’m going to turn the presentation over to Dr. Franklin.

Dr. Martin Franklin: Well, thank you very much. It’s a privilege to be here. And I think I should start by sharing my screen. Let’s see if I can do it again. These are the challenges I face in the world of tech. Have I done it? It is about to. There we go.

Dr. Amanda Fialk: You’re good.

Dr. Martin Franklin: Fantastic. All right. Well, I’m going to just jump in and I’m going to do my very best to keep us to that 40 minute time and leave us plenty of chances to talk about these cases. These are really interesting presentations. And I think that my subtitle here really speaks to something I want to make clear up front which is I’m not talking in this lecture about treating autism. I’m talking about treating OCD in the context of autism which you see quite commonly. But I want to make that plain. I’m an OCD subspecialist and when you do OCD for 35 years like I have across the developmental spectrum, you’re going to see a lot of people who come and present to the OCD clinic and also have ASD traits if not an autism spectrum diagnosis. So, I’m going to try to talk to that issue today.

But let’s very quickly start by reminding people about the DSM-5 ASD diagnostic criteria. You need deficits in social communication and social interaction. And those can vary from pretty mild to really profound. The restricted repetitive behavior, that’s where this gets interesting because there’s restricted repetitive behavior in OCD as well. We’ll have to talk about the differences there. Focused interests and activities, which are – I think starting off right now I want to say that a lot of these things in the context of ASD are pleasurable or of positive reinforcement for the person. And that’s really not the case in OCD. No one enjoys washing their hands. They’re doing it for a reason. It’s function driven and that function is very important. We’ll get into that in detail.

So, symptoms present in the early developmental period. Sometimes if you’re dealing with adults, you don’t have that information. But from the diagnostic standpoint, very early on, eye contact issues in very young childhood and then you start to see the language problems either develop during that period. And it’s rare you can diagnose somebody with ASD as an adult, but you’re usually looking at symptoms that started very young and maybe their social impairment was milder because childhood is different than adulthood in terms of how you need to function.

There’s got to be clinically significant functional impairment and you need deficits in both A and B in order to be formally diagnosed which doesn’t mean that there aren’t people who only have the social communication social interaction problems and don’t have restricted interest. They still have ASD spectrum symptoms and they may impact how they manage a treatment for OCD. And another issue here is not better explained by intellectual disability or global developmental deficits. We need to take that into account and we do know we have people who have all of these things going on. So it gets complicated diagnostically.

I think from the standpoint of who I’m talking about customarily – in DSM-4 to DSM-5 there was a difference. In DSM-4 there was still the Asperger’s category. In DSM-5 they took it out. And so now the ASD spectrum includes some people with some significant but milder impairments at that level one if you will. And then I’d say level one and level two are the folks that we’re talking about in the OCD clinic who are coming in with ASD diagnosis or ASD symptoms who we’re talking about trying to apply ERP to, exposure plus response prevention. That’s customarily who we’re seeing – verbal, at least able to interact in a way that allows us to do some of the deep dives on what the function of these behaviors is. That always is helpful and you got to find ways to get that information as best you can around those deficits.

So my big question is why do I care? I’m not here to diagnose ASD. I’m not here to treat autism, but there’s something about the nature of ASD that makes those comorbidities, whatever they may be, certainly if they’re OCD, it makes it more intense, more severe, and more complex than is typical among individuals without ASD – neurotypical.

And these are common comorbidities you’re going to encounter. And some of these are diagnostically tricky. There’s a lot of overlap. But I’ll try to help you with some of that between ASD and OCD and then talk about the implications of both.

For me in thinking about this talk I was thinking that ASD is a lens through which you’re going to view the OCD in somebody who comes in with both. And I think that’s sort of a standpoint that I’m going to be working from here on out. I need to understand this person in the context of their ASD and I need to understand their OCD in the context of their ASD as well.

So we have this symptom overlap, diagnostic overshadowing, call it what you will and you’ve got folks who have anxiety, depression, and OCD and don’t have ASD. You’ve got people with ASD who don’t have anxiety and depression, but you have a fairly substantial overlapping population here. And I’ll get into that with a little bit of data later. But bottom line is these are diagnostic challenges and we’re going to have to talk about those. And there are also treatment challenges which we’ll also get into.

So in terms of comorbidity probably 70% to 80% of youth and adults with ASD have at least one comorbid psychiatric condition and 41% from one study said they have two or more. And ASD tends not to remit much. So some of these effects extend into adulthood. The ASD might have been there first and the comorbidities then arise later which is what you might expect developmentally anyway. So that again poses some challenges.

As I just mentioned, in terms of impairment we know that the presence of the comorbid condition significantly increases impairment across multiple settings for multiple reasons. And OCD is a good example – a couple of studies have looked at more severe social skills deficits in youth with ASD plus OCD and consistent findings about increased repetitive behaviors, increased sensory symptoms, increased overall ASD core symptoms. That repetitive behavior identification there doesn’t mean compulsions. It means the repetitive behaviors they have anyway being made worse in the presence of the OCD.

And certainly we’ve seen from Chris Kearney’s work, youth with ASD plus OCD exhibit increased impact on school attendance, family cohesion, academic performance. A good reason to work on the OCD even in the context of the ASD. If we could tamp that down, maybe they’re going to function better across multiple domains. It’s a good reason to do it. It’s just hard to do.

Now, customarily, I’m using the old SUD scale. This is from Wolpe going back into the 50s, the 0 to 100. You simplify it with kids, either a 0 to 10 or a 0 to 7 just to give you some ballpark estimate of how anxiety-provoking something is or would be. The trouble though is sometimes in the context of ASD, those rating scales don’t mean a lot. And then we need to modify how we’re asking the questions to get a better answer. Because if I ask you if you’re a seven or a six and someone with ASD doesn’t understand what I’m talking about, I need to find out whether this is the top of the scale or the middle of it. I need to ask that question in a different way. And there’s a different – I’ll talk about that as I go.

But alexithymia is not an uncommon presentation in ASD – significant difficulty with understanding and communicating experience of anxiety. And finding some ways to do that that are tailored to their language and to their way of talking about things, their developmental level is going to be very important because you need the information to guide you when you’re making a hierarchy, when you’re doing an exposure. I want to know, am I overshooting? Is this too hard? Or is it too easy and I’m wasting valuable time? I need to know that. I just need to – in these particular circumstances I need to find a way that this kid can convey that to me even if the number scaling is not going to do the trick.

So these might be some ways you do it. So if it’s 0 to 10 that I usually use – I find 0 to 100 is way too hard for kids. I’m going to get the difference between 56 and 57. It’s going to be meaningless. So I want 0 to 10. In Rogers, we use 1 to 7 to make it even simpler. But maybe colors might help me or maybe faces might help me the way you might at a pain clinic or in an ER to have a little kid point to a face to tell me how anxiety-provoking or how much distress they’re in. We want to find ways and again it’s going to depend on the kid and you’re going to have to find that. And again this is true for kids but it’s also true for adults with significant ASD. It could be true for adults, too. You got to find ways to get the information you need to drive the assessment and to drive the treatment.

So, CBT theory, I could spend five hours on this. I’m not going to but I’m going to give you the short version. This is Mowrer’s two-factor theory. And the simple way to put this is obsessions give rise to anxiety or distress, compulsions reduce it – which sounds like a good thing, but it’s not. The negative reinforcement effect, the reduction of distress, even if it’s partial, is then going to set you up for the next time you get an obsession, you’re going to want to do a compulsion to fix it. Now, I’m on the treadmill. And that’s how OCD is maintained.

What’s interesting about Mowrer – Mowrer was completely agnostic to why people had obsessions. Couldn’t care less. What he cared about was that OCD is maintained by compulsions. And therefore by extension what you should do in the presence of OCD is you should not try to prevent the obsessions. You should try to reduce and eliminate compulsions and avoidance. That’s kind of from Mowrer. Mowrer was expounded upon some by my academic mentors. So basically that’s your treatment – have the obsessions, have the anxiety, don’t fix it with compulsions. Pretty straightforward.

Foa and Kozak elaborated on this. This is 1986. And Edna and Michael were my academic and clinical mentors respectively. They wrote this paper. It came out in Psych Bulletin. What I think is really important and I think gets overlooked especially now as modern theories are being more specific about this is emotional processing of fear requires exposure to corrective information. It’s not enough to just get people anxious. You’ve got to get them anxious in a situation in which they will then be presented with information that’s inconsistent or incompatible with their fears. And that’s what we’re trying to do in exposure.

Therefore, I’m not going to torment you with reading this whole thing. I’ll summarize it for you. They said two things were necessary. You’ve got to activate the fear structure for these exposure exercises to be helpful. And these exposure exercises have got to provide incompatible information. So you said when we sat on this floor and touched the gross spot on my carpet, you said that we’d get sick in 15 minutes. We’ve been sitting here for 30 minutes. What do you make of it? Because that “what do you make of it” is really where I’m going.

It’s delightful if I get habituation within session. I don’t always get it and I don’t need it. It doesn’t seem to predict anything. What does predict stuff is between session decreases in fears. So, I bring you back to my office tomorrow. We touch the carpet. We do it eight times in a row in a session and between sessions and by the end of the week you’re like, can we not sit on the carpet? That’s boring. Good. That’s good because you’ve learned that it’s not associated with the thing you’re afraid of in that kind of fear-based presentation. And there’s some change in the way that you’re thinking about this. Those are the things that exposure are really all about.

Again, I’m going to spare you – not put you through the six-hour version. Let me give you a kid version of this because when you’re talking to kids and especially if you’re talking to kids who have ASD, you’ve got to take that into consideration. I don’t want to be talking about emotional processing of fear and fear networks to people who are going to have trouble understanding that language. This is a simpler way to do it. And I kind of like that it was me being schooled by my own kid.

This is my kid. She’s a high school history teacher now, but at the time she was a pretty accomplished softball player – that’s where that picture was taken from. And prior to that, she was a six-year-old. And she was a six-year-old who would always provide me with refreshing directness in her feedback. And she was watching me pack for a weekend where I was going to go away and do an IOCDF workshop for three days. I was going to teach people all this OCD stuff. And she was mad at me because it was Thursday night and she had a soccer game on Saturday and there was nothing she enjoyed more than dominating other children in soccer and having her parents watch. But I wasn’t going to be there.

So, I’m putting stuff in my bag and she’s taking it out. And finally, she’s like, “Why do you have to do this? Are you telling me it’s going to take you three days to teach people what you know?” Which was no compliment. And I said, “Yeah, this stuff’s kind of complicated.” And she says, “No, it isn’t. If you told it to them in one sentence, you could do that on Friday. You could come home Friday night and you wouldn’t miss my game.” And I’m good at ignoring tone. But I want to know what the sentence is. I’m like, what sentence would that be? This is her sentence. And you know what? She’s right. It’s 100% right. That’s what we’ve got to do. It’s both pieces. You got to lean into the fear. And you’re going to learn that it gets easier the more you do it. And in OCD, of course, you got to stop the compulsions, too. But this is a good summary. And I use this a lot with kids when I’m trying to explain this treatment because it makes it pretty accessible.

So, CBT, the gold standard treatment for anxiety, depression, time limited, structured, and directive. Not a lot of chitchat. We have a structure. We’re going to get through that structure by session. We’re going to continue to do it over the course of the protocol. Key components – I got to teach people what it is we’re working on and why, do some cognitive restructuring or at least getting you to think differently about your own thinking, which is trickier in ASD than it is with neurotypical. And we’ll get into that, too. I’m going to teach you some coping methods, which were alluded to by Amanda earlier. How do we evaluate success? How do we know that you’re doing well, especially if anxiety itself is not a good indicator? It may need some family intervention – the younger the kid and the more family psychopathology I’m looking at, the more we’re going to need that. And for treating anxiety, depression, really the fundamental steps are exposure and/or behavioral activation. Those are the pieces we’re going to be dealing with. But we got to think about modifying those.

So, the treatment is pretty straightforward for OCD – figure out what they’re afraid of, have them lean into those things, and simultaneously reduce and ultimately eliminate all forms of ritual and avoidance. You got to do that hierarchically. You can’t just say stop and they’re going to stop. No, this is not Newhart. And so, we want to make sure that we are paying attention to that. But you’ve got to make some modifications to do this treatment on OCD for folks who are on the spectrum because we know we have these deficits.

This is from Jeff Wood and his colleague. And just think about what this means. I’m going to have trouble sometimes having them understand what I’m talking about in terms of affect and tolerance of emotion is a big issue. Experiential avoidance is quite common. And therefore, if you think about what I’m asking people to do, it’s to not avoid their experiences, have their unwanted thoughts, have the attached anxiety and discomfort and tolerate it. And that’s not really a strength of folks with ASD. So, we got to teach them how to do it and teach them why to do it. And we got to make sure we’re attending to the interpersonal deficits that sometimes can affect therapeutic alliance. I love these kids. Sometimes they’re just going to say, “I don’t want to do that” and that’s enough for them and they’re not interested in whether I’m happy with their choices and I kind of like working in that space.

We have to figure out how we do that theory of mind. Like some folks with ASD, they don’t have a theory of mind. They don’t know what other people are thinking. And so therefore, that’s not a great place to pivot to motivate people. Some people do recognize that other folks have thoughts, but they don’t attend to it. And some people do care, but they’re not inclined to do much about it because they feel like they can’t. So, we got to figure out where this person is on the theory of mind because it’s going to change the way I talk about this treatment. And I’m going to be very careful about that as I go.

So, I’m all about reducing cognitive loading in the context of treating OCD in the midst of ASD. I want to be as concrete as I can. I want to explain what these things are. I need to know whether they even know – do they know they have ASD? Has that been talked about with them? And if it hasn’t been, I’ve got to unpack that and I’ve got to make sure I know – if it’s a kid, I’ve got to make sure I know what the family has said and hasn’t said and what services they have. So, I’m putting this into a framework that they already know something about.

So, really talking about educating them in understanding emotion. It’s a basic step, but it’s not a basic step I would skip with these folks. And I think when I think about doing this treatment, usually ERP, I’m usually done in 14 sessions. With kids with ASD, I’m already doubling the number of sessions because I’m doing a fair bit of this as well. So talk to me about it. Let me teach – see if I could teach you about what anxiety is and means and what does it mean to you. It’s going to take me some time and that’s okay because those are my building blocks. If I don’t have that built, it’s going to be harder for me to motivate people to move forward.

So, what are cognitive errors? What is a thinking error? Just because you think something doesn’t necessarily mean it’s true. And with ASD, that sometimes is a gap. And you’ve got to really talk to them about why that might be the case. Why these are hypotheses rather than truths that are popping into your head.

And I’ve got to talk about these coping skills and you know when do you need time to take a walk to cool off? When is it not so good to do that? Really talking about putting that in a social structure which may not be again an area of strength. I’ve got to build it out if it’s not.

So, the behavioral focus, really pushing behavior, really trying to make sure I’m being very specific and as much as I can talking about the presenting concern and the context in which it’s occurring. The proverbial bread and butter – activities, homework assignments, exposure-based tasks. And I think the exposure-based task at the bottom, it’s the active ingredient of every treatment for anxiety that should be. If someone’s willing to do exposure, I’ve got to help them build it out and kind of climb that ladder, if you will. I want to make sure I’m doing that.

One of the things you’ve really got to pay attention to in ASD is generalization. So, probably one of the deficits you see is you may do an exposure in session and send them home to do it and it may not translate well because they haven’t had that opportunity to do it at home. So, I’ve got to be ahead of that. I’ve got to have those assignments planned out and I’ve got to do them in multiple contexts, not just in my office and assume that because it worked that way in my office, it’ll work that way in your school. It may or may not. We got to go figure that out. And I’m going to be very explicit in training around that.

Meet people where they are always – little things like talking about a hierarchy. And if they don’t understand what a hierarchy is or what you’re talking about, you better find a better way to put it. I’m going to find that out in the midst of interaction with the kid, right? Anxiogenic stimuli – what are you talking about? I tell kids when I’m training them, even neurotypical kids, but especially kids with ASD, I say, “Look, I have a tendency. It’s a bad tendency to slip into nerd words. So, I’m going to use fancy terms and if you don’t understand what I’m talking about, stop me right away. Put your finger up. Let me know. I just used one and I’ll do my best to make sure you know because you can’t just make assumptions that they understand the language the way that you do. And you’ve got to check in with them about that.

Props and fun and making sure that you’re making this treatment accessible to them and interesting to them. You’ve got to do some tailoring – a lot of worksheets for effective education. If they’re not people who like to read, I got to figure out how I’m going to get that across. If they’re people who love to read, it might be somebody on the spectrum who would much prefer me doing this written rather than in interpersonal exchange because that’s a gap. So, I’m going to give those kids more stuff to read and try to make sure it’s developmentally appropriate and make sure we go over it.

So, I tend to be metaphorical in my work with these kids. I want to know what their metaphors are. I’m always trying to externalize the OCD. So, “tell me what your OCD was barking at you about” is sort of – it’s like breathing right now. John March was one of my mentors and bossing OCD off your land was the very beginning of those protocols in the early 90s. So I’m looking to do that. But I’ve got to make sure the kid understands what I’m talking about and make sure they’re willing to go on the ride. If they have some preferred villains from their video games, I’m going to think about making those – developing some way to talk about this that incorporates that. Normalizing the emotional experience as well.

Parents, I need them. And in adults, kids, teens, I need them. And I’m going to do some behavioral management training. I’m going to try to teach them to be coaches. Extending that repetition – really important, the generalization issue we just talked about. I got to make sure parents can be there to help guide and really making sure that they are helping the kid learn this stuff. And obviously parents are going to be highly motivated, but you can’t make people do stuff. You got to motivate them to do stuff. So the parents might want them to function differently and feel differently. That’s great. But if the kid’s not on board, I can’t have the parents getting ahead of it. I got to teach the parents how to read the kid and take smaller steps if we need to. If I need more rungs in this hierarchy, then I’m certainly going to put them in or more hierarchies. Talk about the generalization.

So, psychoed – this is from March and Mulle back in the day. Externalizing the OCD. A couple of little examples in there that he’s used. It could be anything you want. Just depends on the person and depends on their interests. And I would say it’s even more important to make sure those interests match when you’re talking about the treatment of ASD.

The brain hiccup – I like to talk about the brain sometimes. That’s a way to make this sort of more accessible and also a way to blame them less for having these symptoms. And if they already have that metaphor about ASD, then I want to build upon it and see what have you been told about the brain and ASD. What do you know? And I want to build on their explanation and talk about the OCD as a hiccup. It’s a hiccup. And so, you know, what are we supposed to do in the presence of a hiccup? Well, we’re supposed to continue on and you know, we’ll learn how to confront it as we go. But, it’s not your fault and it doesn’t mean you’re a bad person or you’re an inflexible person. Just means you got a hiccup.

Whatever I can do, whatever way I can build this out, I want them to feel like they’re not alone. So, if they can tell me – if they like, let’s say they’re sports kids, I want to do the math. Let’s just say you’re a Philadelphia Phillies fan, for example. There’s 40,000 people in the stadium. How many of those people do we think have OCD? Let’s help them do the math. Help them understand that they’re not alone and that we understand this stuff pretty well. Making sure we’re reducing stigma by the way that we educate around this.

So again, there are ways to think about repetitive and inflexible behavior. And I think the bottom line is function, not form. The fact that you’re doing a repetitive behavior tells me not much about what drove that. And when I’m considering diagnosis, when I’m talking about stereotypies as opposed to compulsions, there’s a goal direction that is really important in OCD. And a lot of times kids can tell you the difference.

So if I ask a kid why they’re stimming, why they’re doing their hands like this, they might tell me, “I don’t know.” If I ask them, “Why did you just wipe your hand off on your leg?” They may well be able to tell me that they did that because they were scared that they were contaminated. And I’m going to explain to them why those two things are different and why one of them is something we’re going to try to fix and the other one we’re going to leave alone. I’m not trying to fix self-stimming. I’m not trying to fix stereotypies in the context of treating OCD. I’m trying to reduce compulsions, which means I got to know what it is. And again, I’ve got to make sure I’m paying attention to this in the context of people having both.

So, I want to control the environment – if I have OCD and I want to keep things the same and again, sameness and rigidity are part and parcel to ASD. But if I’m doing that for a reason because I’m afraid that dad is sick and he has to sit over there because he’s out more in the environment, then I’ve got to think about that more as compulsive or avoidant and work on it as opposed to “people sit where I like them to sit.” That’s a different thing. And decreasing interaction with new stimuli is another thing you’ll see in both in the context of ASD but also OCD. Feeling totally clean – is that necessary? Is that something we can work on and something you’re motivated to work on? And gratification, temporary relief. We got to explain why that isn’t necessarily what we’re looking for in the context of OCD.

Restricted interests – reinforcing. So kid wants to talk about – a good example of a kid who loved birds and she would love to talk about birds and talking about birds was not obsessional. People would sometimes say this kid has obsessions about birds and I start talking to the kid. The kid’s full of joy and wants to tell me about all the birds that are in my neighborhood and all the birds that are in her neighborhood and birds she’d love to see. And to me I don’t want to treat that as obsessional. I want to actually think about how I can incorporate that into my treatment to make it more fun. And I can tell you right now, one of the first things we did was we started printing out pictures of birds to put on our homework sheets. And that was not obsessional. It was just something that made it more fun, made the world a little bit more understandable and less overwhelming. And I’m fine with that.

But in the midst of that, I don’t want to treat unwanted intrusive thoughts like they’re restricted interests either. I’ve got to figure out the difference and the affect will tell me. The affect will tell me and with respect to compulsions, goal direction will tell me. So flapping – it might reduce your affect but that’s not the purpose of it. The purpose of washing your hands in response to feeling contaminated – the purpose is to reduce the likelihood of a feared outcome like getting sick or to immediately restore homeostasis and make the bad feeling go away. Those are very different things. And kids can learn that difference in which case I’m going to say these are the things of OCD and we’re going to go after them with this ERP stuff. The other stuff we’re going to leave be.

Not just right experiences versus behavioral rigidity – I’m also looking for differences in experience, changes in affect over time when it comes to the not just right experiences. It’s usually not everything. It’s certain things. And I want to make sure I’m teaching the kid the differences in those two things. Typical versus atypical obsessional content – I’m also paying some attention to that. You might have more atypical obsessional content in ASD, but if it’s obsessional in the way that I mean obsessional, it drives anxiety or discomfort as opposed to “it’s just a thought that I have and it might be unusual for people to think about, but it’s not unusual for me to think about.” Those are very different things. If I want to go after them, if they have that flavor of giving rise to anxiety and then attach to compulsions that reduce it – if it walks like a duck and quacks like a duck, it’s probably a duck. Actually, one of the pictures we used with that kid with the birds, we used one of those bunch of ducks to try to figure out which is OCD and which isn’t.

So, let’s talk a little bit more about this application. I’m gonna quickly blow through this. This is a really cool study that was done – treatment of anxiety and autism spectrum disorder. This was a three-site multi-site randomized trial looking at the use of Coping Cat versus this behavioral intervention for anxiety in children with autism. So, it was more like an anxiety protocol that was largely convergent with Coping Cat but was written specifically for kids with ASD and they were both compared to treatment as usual in this multi-site trial. This was Phil Kendall, Eric Storch and Jeff Wood published in 2020 the primary outcomes and what they found was pretty interesting. They found that their tailored protocol for the treatment of anxiety was – not on every measure but on most measures was better than Coping Cat which is what you’d do for neurotypical anxious kids. And both were better than treatment as usual which is just sticking with what you’ve already been doing. And I think that was really interesting to think about. So the tailoring is important is the bottom line. They only treated separation anxiety, social anxiety, and GAD. They didn’t include OCD in there because they felt like OCD was something a little bit more specific. And it is. Unfortunately though, we don’t have a trial like this in OCD.

So, we want to make a hierarchy, make it fun. Pictures of ladders, if you will, trying to make it engaging. I want to reinforce externalization and talk about how much this thing is messing things up. Rewards, rewards, rewards, rewards. What are they like? How can you build that in? How can you have the effort they’re making in treatment tangibly translate to rewards? And you can do it in your discussion. You can also do it by setting up reward systems. And the reward systems in that multi-site trial I just said – use of rewards and reward responsiveness were highly associated with better outcomes for kids. So that was very important to do.

So we want to practice and again because of the problem with generalization I want to practice in every place I can figure out this kid might be. Bring their attention to the specific behavior, model it if I can and reinforce them for doing it and have other people do the same practice – positive practice and really spending the time on positive reinforcement when they’re doing the stuff you want rather than admonishing kids. You shouldn’t admonish kids anyway, but especially these kids, you’re going to lose them real quick.

Got to reduce accommodation. So, if the families are moving heaven and earth to make sure the kid can function, I’ve got to work on getting everybody on the same page to reduce that. I want to reduce it slowly. Mom’s not going to answer 11 questions on the way to school. She might answer one and then we’ll get rid of that over time. Or say goodbye in a particular way. We’re going to try to do this more flexibly because it seems like you’re getting very nervous and upset when she doesn’t do it right. Why don’t we try having her do it maybe not exactly right? So, we’ve got to get this down. We know from OCD without kids with ASD, we know from those studies that reducing reassurance and reducing accommodation in general is critical to getting the outcomes we want. And I may need to involve whoever is being asked these questions. If it’s reassurance, school personnel, the woman on the lunch line – my kid, you know, can you tell me when that was made? I got to get people to understand that you shouldn’t ask that question and even better if people don’t provide that answer because it reinforces the OCD.

So, the difference – I’ll leave this chart in here. I’m not going to go through it, but it’s in here from Alec Pollard’s group. The difference between reassurance and information seeking. It’s a good guide for people and good guide for parents.

I want to validate people, tell them it’s okay that they’re feeling what they’re feeling, but I don’t want to provide that reassurance that temporarily relieves the anxiety because it’s just another form of compulsion. It’s going to reinforce the OCD.

Teach them how to do it. I want to make sure they understand what I’m trying to do and why I’m trying to do it and why it’s important and really be as best I can – join them in this process of working on this stuff.

Some things I put in here for parents. Again, you’re not going to get this all right away. You’re going to get this over time. And if I can delay reassurance, I’m okay with that. If I can give you a certain number of questions you can ask today – yes. You know, before we started working, you would ask questions all day long. Now you have five. You can ask five questions. You have a little card. You can hand mom a card that says, “Okay, I’m using one of my five now.” And as the kid gets better at it, I’m going to reduce that to three. Get them to not ask those questions, to tolerate their own discomfort and go about their business anyway in the spirit of long-term gain.

When I have a kid who likes stuff, I want to build it in. The Spider-Man metaphor for OCD. There’s also the Sneetches from Dr. Seuss – they sit there and they fight for 20 years about who’s going to move. And I’m talking to a kid about the fact that maybe if you just moved, life would be a little bit easier. I had a couple – a little bit of reading with the younger kids on that one. They were able to get the point and then we’re able to use the Sneetches to help move the treatment.

The hierarchy – build on past success, offer collaboration and choice. I may need more rungs for a kid with ASD. I’m going to model bravery and I’m going to really ask people a lot of questions about what do they make of it. Did the bad thing happen or not? Are you still uncomfortable? Sounds like you’re getting a little bit more comfortable. That’s a good thing because your OCD has been telling you that that would never happen. So, I want to point those things out. I don’t want to assume that they know that. I want to highlight those observations when I see them.

The reward program – very specific and very very important. This is from the Wood study I showed you, 2020. Developing and using the reward program – critical. I stole this from John Piacentini who’s an OCD researcher. So every time they did an exposure or they came to session, you fill in a little one of those circles and when you get enough circles, you get to get a trip to the zoo. And there’ll be a lot more intermediate things because a trip to the zoo is not an immediate reinforcer. So I want to do both. I want to make sure I’m capitalizing on that, but also that the kid sees that there’s an incentive to confront their anxieties, an incentive to show up, there’s an incentive to do the practices, and it’s going to yield things that you want. And if the kid doesn’t like the zoo, then you don’t go to the zoo. What do you want? Think about that upfront.

These are nice ways – I love the Inside Out movies. These are nice ways to help kids better understand emotion, which you’re going to have to build upon to do this treatment. And all these different faces. These are different things that I’d have them draw. Or, you know, if they don’t like to draw, I’d probably drag one of these out and see, can you help me understand what happens when you’re in this situation? What happens when you’re feeling this emotion? What does it look like to you? So, I want to make sure they’re getting some education about emotion.

Focused interest – make it work for you. I had a kid once, teenager, and he had fear of death germs. And death germs were associated with anything that had to do with death. And unfortunately for this kid, his grandmother died, and she used to live in their house. So, their entire house became contaminated. This kid loved to talk about fishing and one of the things that we set up with him – he was a very good fisherman. He was also a very good chef. So he liked to talk about catching stuff and preparing it. He made a website called Catch and Prepare which was really cool. And I’m like that’s fantastic. I would love to hear all about what you caught this week and how you prepared it. I love seafood too. I’m not nearly as good at it as you are. But we got to do that at the end of the session. First, we got to confront the death germs.

And what’s fascinating to me is if you think about what fishing is, right? You’re taking stuff out of the water and you’re killing it. And for him, it was very specific. Like those death germs were fine. Had nothing to do with anything. It was grandma and the stuff that she touched that was much worse. So, we had to work on that stuff. Later on, he had – he kind of developed another focused interest in driving and he still had some death germ stuff. So, what we agreed to was having dad take him to all driving lessons to take place in a giant graveyard by their house. Why? Because I’m getting to confront – I’m building this in so that he’s got incentive to do it and he’s going to get better and by touching the tires and doing exposure. We did a lot of practice around that too. So, instead of fighting the focused interest, make it work for you.

I’m going to save you these examples so we can get on to the questions. If the kid’s not responding well, if they’re not already on a med – with ASD, oftentimes they’re on a med, they’re on an SSRI. I’m presenting some data next week in Chicago suggesting that if you’re on an SSRI, you should be on a therapeutic dose of an SSRI. So, not 10 milligrams of Zoloft, more like 20 to 40 because your outcomes are better. And so I think I want to consider if they’re not on one, maybe they should think about being on one to help move the exposures along and whatever exposure engagement I’m getting. If I’m not getting enough, I got to think about how I modify – assess motivation about and beliefs about treatment. Am I – I’m quick to – you tell me why should you do this? It’s one thing for your parents to want it. It’s another thing for me to suggest it. It’s a bigger thing still for us to do this in a way that it matters to you.

I put my last slide here. This is my friend Alec Pollard. He’s an OCD expert and this is a fantastic book and I love this book. It’s specifically for families where the loved one won’t seek mental health treatment, but it’s also for people who are in treatment who don’t want to do the treatment. And what’s really cool about the book in particular, the language he uses to try to help motivate families to shift their thinking – it’s away from trying to get people to do stuff and it’s more like trying to help your family become healthier. So it’s changing the language of “I’m going to push them” because when you push people, right, they’re going to push back. So, and MI and the work that Pollard has done here in this book that was published in 2024, I think. And I would say that that’s really important stuff to be teaching people how to do because in the end, folks with ASD, folks without ASD, they don’t want to necessarily do your exposure. So, you got to load up on reinforcement and you really got to load up on changing your language so it’s not so – I don’t know – you’re not tipping your hand that you want them to do things differently. They don’t like that. I don’t know if anybody likes that.

And I think this is my last slide and I’m going to open the floor. This is Cape Horn by the way. There’s a long reason for that. I’m not going to bore you with it.

Dr. Amanda Fialk: Thank you so much, Dr. Franklin. We’re getting a lot of activity in the chat and in the Q&A. So, I’m gonna get right into it and then you know, clearly we’re going to need to have a part two because we’re not going to get to every question, but I will try to get to as many as possible.

So, one question came in. The question states, I have a question about social avoidance and how to distinguish it if it is due to feared possible outcomes related to OCD, in which case we would encourage the ERP versus potential exhaustion and burnout from typical social distress related to the ASD.

Dr. Martin Franklin: Yeah. It’s a great question and I would say that if you have a kid that can engage in conversation about that, then you’re going to engage in that conversation. I’m going to ask questions and if there are times when they can function well socially and times that they’re not – either they’re telling me about them or family’s telling me about them – I’m going to try to seize upon that and say, you know, from what I’ve heard, there are times you actually like being around people and there are also times that it’s just too much. So, can you help me understand better the differences between those times?

And I also want to know something about that kid, about their social interests because some folks with ASD, they would love to be able to make and maintain friendships. Some kids, they’re indifferent to it. So if it does feel like it’s fear driven – I’m afraid this will happen if I try to join – I also have to think about if they’re afraid things will happen if they try to join. I want to know what was the last time they tried to join and how did that actually go?

And what do you find a lot of times with kids with ASD? They’ll walk into the middle of a situation where kids are talking or kids are playing and they’ll want to pivot right away to their focused interest. And if the kids are playing a different game and you walk in, start talking about ceiling fans or birds, like that’s going to come across as weird and you’re not going to have a positive response from the group. And then that’s going to make you feel like you don’t know how to do it. So with a kid like that where they want to do it, they just don’t know how, I’m going to do social skills training to make that happen. Not just exposure. Because exposure in a case like that, if they don’t know what they’re doing, it’s going to be exposure that’s not disconfirming your fear. It’s going to confirm your fear.

So, I got to know the difference there. And I think the bottom line is I want to make sure I have a good relationship with the kid or the adult and I want to make sure that I understand that there are times when you would like to function in the situation socially and it’s just hard for you to do or is it just doesn’t matter to you. Or the alternative is I’m just so burnt out from trying to get through the day that I don’t want to do that. And then I want to say, well, what’s the cost to you of that? And if they say, well, I can’t make friends this way and I know I need to work on making friends, then I want to talk about how we would do that.

Dr. Amanda Fialk: Yeah. Thank you. There’s a couple of questions in that similar vein. Another one that came in, and there’s a couple also in this sort of area as well. What do you do if the thing that the client is afraid of cannot be proven in a session or in a timely fashion?

Dr. Martin Franklin: Oh yeah.

Dr. Amanda Fialk: Like fearing long-term consequences like…

Dr. Martin Franklin: Yeah. Like burning in hell is a good one.

Dr. Amanda Fialk: Like burning in hell.

Dr. Martin Franklin: Yeah. If I don’t do my prayer ritual, I’m going to burn in hell. It’s really hard to disconfirm you’re going to burn in hell in half an hour.

Dr. Amanda Fialk: Correct.

Dr. Martin Franklin: So what I would say is I want to explain that to the person. I want to explain the concept and this is John Grayson 101 of tolerance of uncertainty. So, we all live our lives not 100% certain of much of anything. What’s the old joke? Death and taxes. But I think Grayson would say that we want to embrace the uncertainty and basically demonstrate that we can live and we can function despite not knowing for sure. Give them a lot of examples and see if I can get them to be motivated to lean in. But what often happens if you do imaginal exposure with things like that, the 85th time we read your script about burning in hell, my guess is because you’ve engaged with it and because you’ve done exposure to the content, it’s not going to be as anxiety-provoking the 85th time as it was the first. So even though I don’t disprove that you’re going to be or not be in hell, I am going to be in a position where you’re going to be less anxious. And when you’re less anxious, you might be more amenable to the logic that maybe this isn’t the way it works.

Dr. Amanda Fialk: Yeah. Do you ever see clients who come in with a psychotic disorder when in actuality the diagnosis should be ASD? Also curious how you treat this population when the intrusive thoughts involve suicide, negative self-thoughts, etc.

Dr. Martin Franklin: Yeah, it’s – first of all, there’s a great paper that literally just came out. It’s on my desk. Chris McDougle in a journal called Expert Review in Neurotherapeutics just wrote a paper about differential diagnosis in ASD and got right into that issue that you’re talking about – about differentiating it from psychotic disorders and schizophrenia etc. And a lot of times that’s going to come down to – I think Chris makes this point well – it’s going to come down to the other behaviors you’re going to see. Flat affect and social isolation and things like that which you may actually be more likely to see in ASD than you will neurotypical. But I think Chris handles that one well.

The other question that was embedded in there has to do with suicidal ideation and imagery, suicidal imagery. And Greg Brown, who’s a friend and a professor at Penn, he and I have done a couple of presentations together about that. And Greg would say, if it’s suicidal ideation, I want them moving away from it. And I would say if it’s OCD, I want them moving towards it. So you’ve got to teach people which it is. And to me, the desire to die is always going to be where I’m going.

So if the person says, I get intrusive thoughts of me hanging when I’m looking at, you know, at an area where I could hang from, I ask, is that your intent? Like are you feeling like you want to die? No. It’s an intrusion. Okay. I survey that carefully. When I find out that it really is intrusive and unwanted and inconsistent with their affect, I want them to go do exposure to it. If it’s part of a plan like “my life is so miserable, I’m just better off if I do this” and I start to find out some more from that query about their desire to die, about not being connected to important groups – the Thomas Joiner kind of approach – if I find that they’re at risk, I’m going to have them moving away from that. That’s what a safety plan is. Essentially, a safety plan is here are the things that you’re going to do to move you away from situations in which you’d be more likely to act on these thoughts and we’re going to let those thoughts come and go and we’re going to move you towards people and situations and things you enjoy to help pass the time while that happens.

In OCD, I want to go straight at it. I have intrusive thoughts I might stab myself in the chest. Guess where I’m going? I’m going to the butcher block in the kitchen. Yeah, it’s a very different thing and they’ve got to know – they’ve got to be good at this, which means I got to train them up.

Dr. Amanda Fialk: Thank you. We are out of time and there’s still a lot of questions. So, we definitely going to have to do a part two, but thank you so much, Dr. Franklin. This was fantastic. Clearly everybody was quite engaged. Please feel free to email either of our teams to stay in touch, to learn more about future events. We are grateful that you all joined us here today. So, thank you.