How To Treat Children With Anxiety/ASD/IDD (with Dr. Krista Johnston and Monica Millar)
This conversation highlights not only the research this team is doing but the collaborative relationship between psychologist Dr. Krista Johnston and BCBA Monica Millar. Whether you’re working across disciplines as a BCBA and a psychologist, or serving clients with IDD, ASD, and anxiety, this conversation will be of interest to you!
Monica Millar and Dr. Krista Johnston, both work at the ABLE Developmental Clinic in the Greater Vancouver Area, British Columbia. [1:06]
CBT – Cognitive Behavior Therapy is an evidence-based practice for neuro-typical children and adolescents and children or adolescents with ASD with modified approaches. [3:07]
ABLE is a multidisciplinary clinic where Monica is currently working as a behavior analyst. She provides behavior analytic services, mostly in the home, to support both children and families in the Lower Mainland. [5:30]
Monica attended a couple of Krista’s workshops at Pacific Autism Family Network and then another one through Autism Community Training. Then she contacted Krista, invited her to be Monica’s clinical supervisor and thesis committee member. From there, Krista dedicated time to teaching Monica more about the theory and practical application of cognitive behavior therapy. [6:37]
Krista is a clinical psychologist and she works at BC Children’s Hospital in the Department of Psychology, Division of Neurology and Neuropsychiatry. This is actually a tertiary level care clinic for children and adolescents with neurodevelopmental differences, including autism. [7:19]
Krista also works at ABLE Developmental Clinic and does assessment, treatment, and consultation with a wide variety of children, adolescents, and even young adults. She treats anxiety, depression, OCD, and social, attentional, emotional, and behavioral challenges. [7:44]
As behavior analysts, Monica and Erika are bound by the BACB ethics code. In section 2.10 it highlights the importance of collaboration. [9:10]
Psychologists also have an ethics code section that says that they are to work with other professionals in a professional and cooperative manner for the good of the clients. They’re specifically trained in multidisciplinary collaboration and they’re very interested in working with other team members, be it behavior analysts, BIs, Speech-Language Pathologists, psychiatrists, OTs, etc. [10:00]
From the outset in the development of the research project, it really was focusing on family-centered positive behavior support, and CBT (Cognitive Behavior Therapy). [11:15]
Most of the previous research for intellectual and developmental disability has focused on specific phobias with more of a behavioral approach. However, it doesn’t really address the other elements, such as psychoeducation or cognitive restructuring. [11:36]
“CBT is full of really great strategies and we know it’s effective when it’s modified for the ASD population.” — Monica Millar
Krista’s job was to support Monica in bringing about the theory and the application of CBT. [13:34]
Krista has a particularly behavioral background for a psychologist, so she and Monica probably have even more in common because of that. [18:09]
As a team, Monica and Krista created a psychologically safe and collaborative environment right off the bat for all ideas to be shared and discussed as a team in a collaborative and respectful way. They came up with a hybrid approach that made sense to support the family. [18:26]
Psychologists are highly trained to do complex things and treat multiple layers of mental health comorbidities. They use proactive and reactive strategies to help the team implement strategies that support mental health, even before they get to a clinically problematic place. [21:20]
Anxiety is part of normal child development and the human experience in general. It’s totally normal and it’s adaptive. [24:19]
When looking at an anxiety disorder, this fear or worry really becomes so challenging that it interrupts the child’s ability to complete tasks that are of value to them, or to even function on a day-to-day basis. [25:12]
Certain types of anxiety are expected over the normal course of development. For example, separation anxiety occurs in infancy. And then environmental fear, like fear of the dark comes online around 2 to 3 years old, or the fear of animals. [25:29]
Anxiety itself involves the anticipation or perception of threat or danger that’s often dealt with by avoiding. [26:11]
“Anxiety and avoidance are very best friends. They run off into the sunset together and just really feed off of each other.” — Krista Johnston
Social anxiety can inherently be part of having difficulties with social communication and social interaction. It can be challenging or stressful to participate in social environments when you’re missing out on opportunities for social development. [29:34]
The full spectrum of social anxiety is most often seen in children without intellectual disabilities, because they’re more attuned to social evaluation or social perspective taking and self-awareness. [30:04]
Individuals with intellectual developmental disorder may definitely still find attending groups stressful, or talking to new people, or demonstrating in front of the class. They’re not immune to experiencing social anxiety. [30:45]
CBT is an evidence-based treatment for children with anxiety and it’s been found to be effective for autistic individuals. [32:16]
CBT focuses on identifying and modifying problematic thinking patterns and beliefs, and challenging behavior, like avoidance, that serves to maintain anxiety. [32:35]
The CBT triangle includes thoughts, feelings, and behaviors written at each point of the triangle. Krista’s intervention touches on each of these categories. The triangle consists of psychoeducation, cognitive restructuring, and exposure hierarchies. [32:47]
CBT is effective for neuro-typical children. It’s effective when modified for the ASD population, but it hasn’t yet branched to intellectual and developmental disabilities. [34:22]
Family-centered positive behavior support has a strong research base in the treatment of problem behavior. In Monica’s study, they referred to it as anxiety-related problem behavior. [34:42]
“Family-centered positive behavior support is a science-based practice that focuses on family values to improve quality of life for those you’re working with.” — Monica Millar
With family-centered positive behavior support, Monica and Krista use something called a competing behaviors pathway diagram. They broke the treatment plan down into five different modules. The modules covered things like — what is anxiety and what does it look like. [38:37]
To highlight the research that is out there, Monica mentioned Moore and Davis, as well as Attwood and Scarpa. They have given some pretty concrete recommendations on the modification trends. [41:51]
“I think a bit about anxiety in terms of like, just even a general escalation cycle with like green is calm and yellow is a bit anxious, but still coping. Orange is starting to become more dysregulated and red is just highly, completely overwhelmed and shut down. And most of our work needs to be done proactively and like the green and yellow zone to be best supportive.” — Krista Johnston
Anxiety isn’t always logical. Sometimes, as a parent, it’s just about communicating the belief in your child’s ability to cope through this, and that you’re there with them and practicing together. And not waiting too long to seek consultation. [49:13]
“Having a proactive and reactive strategy for dealing with anxiety, just like what we do with behavior, is something that’s an important thing to consider.” — Krista Johnston
Kelty Mental Health website is a resource hosted through BC Children’s Hospital that has a lot of different parent resources. [51:08]
Anxiety Canada is a wonderful website to get started on some basic psychoeducation around anxiety. And it’s got sections on that website for both parents supporting their children and for youth supporting themselves. [51:24]
Dr. Krista Johnston is a registered psychologist offering treatment and assessment services for children, adolescents, and adults. She completed her PhD in Clinical Psychology with a specialization in child and adolescent development at Simon Fraser University. She completed her residency at BC Children’s Hospital, where she also conducted her doctoral research examining a group-based treatment for children with autism and anxiety. She also completed a two-year psychology fellowship within the Division of Neurology where she provided specialized assessment and consultation services for young people diagnosed with epilepsy. In addition to being an associate at ABLE, Dr. Johnston continues to work part-time at BC Children’s Hospital within the Department of Psychology.
Dr. Johnston works with children, adolescents, adults, and families providing evidence-based treatment and assessment within a strengths-based, developmental framework. Although her primary therapeutic approach is Cognitive Behaviour Therapy (CBT), she has a strong behavioural background, and also integrates aspects of ACT, DBT, family-systems, and attachment-based approaches. She has experience working with a wide variety of mental health challenges including anxiety, depression, obsessive-compulsive disorders, as well as social, attentional, emotional, learning, and behavioural challenges. In addition, Dr. Johnston has over 20 years of experience working with people with autism spectrum disorder and their families. She is passionate about working collaboratively with clients to improve quality of life, meet personal goals, promote mental health and wellbeing, as well as proactively manage challenging behaviours.
“I know psychologists benefit so much from the advanced technical knowledge of behavior analysts.” — Dr. Krista Johnston
Monica is a Board Certified Assistant Behaviour Analyst (BCaBA) who is currently working towards her Masters in Special Education with a concentration in Behaviour Disorders from the University of British Columbia. Monica has worked in the field of Applied Behaviour Analysis over the last 6 years, implementing behaviour analytic programs for individuals between the ages of 3 to 36 years old. Monica’s research area of interest includes the use of positive behaviour support and clinical psychology in the treatment of Anxiety in individuals with Autism Spectrum Disorder (ASD).
“CBT is full of really great strategies and we know it’s effective when it’s modified for the ASD population” — Monica Millar
We’re trying out transcribing our podcasts using a software program. Please forgive any typos as the bot isn’t correct 100% of the time.
Welcome to the Behavioral Health Collective podcast. This is a community of behavioral health professionals who are passionate about working together across disciplines to improve client outcomes by valuing collaboration, connection, humility, and evidence-based practices in a variety of behavioral health fields.
The goal of the Behavioral Health Collective is to highlight stories of collaboration between practitioners, the work they’re doing together, and how thoughtful and ethical collaboration between fields can lead to better client outcomes. Thanks for joining me today to dive deeper into stories of professional collaboration.
Today is our first episode that kicks off this new focus of collaboration between behavioral health professionals. I’m really excited to share this new focus because I truly believe that this is the way forward for behavior analysis and other allied health fields. Clients are better served and professionals work together and bring perspectives and evidence-based practices from other disciplines.
Today, we have two clinicians joining me to talk about their research and using modified CBT and positive behavior supports to treat anxiety in autistic children. Our guests, Monica Millar and Dr. Krista Johnston both work at the ABLE Developmental Clinic in Vancouver, British Columbia.
Monica is a board-certified behavior analyst working with children and adolescents with various diagnoses, including autism, down syndrome, IDD, ADHD, and anxiety. Monica is currently pursuing her Ph.D. through Queen’s University Belfast, where she plans to extend research that she’ll be sharing with us today. Monica’s research is in the area of anxiety in individuals with intellectual disability, which we referred to as IDD and autism. Her work involves using the best practices and current research to support young people with this profile.
Dr. Krista Johnston is a registered psychologist offering treatment and assessment services for children, adolescents, and adults. She completed her Ph.D. in clinical psychology with a specialization in child and adolescent development followed by her residency at BC Children’s Hospital, where she also conducted her doctoral research examining a group-based treatment for children with autism and anxiety.
In addition to being an associate at ABLE, where Monica also works, Dr. Johnston continues to work part-time at BC Children’s Hospital within the Department of Psychology, Division of Neurology, and Neuropsychiatry clinic. Dr. Johnston works with children, adolescents, adults, and families providing evidence-based treatment and assessment with the strengths-based developmental framework.
Although our primary therapeutic approach is CBT or Cognitive Behavioral Therapy, she has a strong behavioral background and also integrates aspects that ACT, DBT, family systems, and attachment-based approaches. She has experienced working with a wide variety of mental health challenges, including anxiety, depression, obsessive-compulsive disorder, as well as a social, attentional, emotional, learning and behavioral challenges.
In addition, Dr. Johnston has over 20 years of experience working with people with autism spectrum disorder and their families.
So, just to introduce a little bit about what we’ll talk about today. CBT – Cognitive Behavior Therapy is an evidence-based practice for neurotypical children and adolescents, and children or adolescents with ASD with modified approaches, specifically.
A limitation though is that an evidence-based practice with those with an IQ of greater than 75 limits the extension to those with comorbid IDD. Positive behavior support is typically used to support behavior change for individuals with IDD and other various developmental disorders. But little evidence exists to show how this approach could treat anxiety, specifically.
In this conversation, Krista and Monica will share insights from their research into modified CBT and whether it is an effective tool to treat anxiety in individuals with ASD and IDD. Monica Millar and Dr. Krista Johnston work together alongside Dr. Joe Lucyshyn from the University of British Columbia to support a mother in treating her child’s anxiety by using a PBS framework and strategies to implement modified CBT.
I’ll let them describe it further, but what I really want to capture today is how these two professionals work together to implement best practices from their respective fields to approve client outcomes. In added to the small body of research in this area and are helping establish new evidence-based practices, I’ll be asking them about how they work together as behavior analyst and a clinical psychologist.
Without any further introduction, let’s get to this conversation because it is really exciting and quite inspiring to hear about their collaboration together on this project.
Okay, good morning, Monica and Krista. How are you?
Good morning, doing well!
Thank you so much for joining me today. I really appreciate you taking the time and I am so excited to be learning more about your work together, mostly because I just listened to your presentation through BC ABA and I’m so excited that I have the chance to follow up pretty soon after that to learn more. So, thank you so much.
Now, I guess we can just get started and jump right into some questions that I’d had. So, to start it off, I’m really interested in knowing more about how your research came about. You’ve been working together and you have this project and presentation, but can you tell me the backstory a little bit? You know, what do you both do at the moment and how this project came to be given that one of you is in behavior analysis and the other is in psychology?
Yeah. So, I’ll go first. As you mentioned, Dr. Krista Johnston and I both work at ABLE Developmental Clinic here in Vancouver. So ABLE’s a multidisciplinary clinic and there I’m currently working as a behavior analyst. I provide behavior analytics services, mostly in the home to support both children and families here in the Lower Mainland.
So this research project really, it came about as part of my master’s thesis for the University of British Columbia under the supervision of Dr. Joe Lucyshyn. I think first it’s worthwhile noting just that I’ve been particularly interested in the treatment of anxiety since my introduction to the field. So my first exposure was working with a child with generalized anxiety disorder.
And on that team, there was a really close collaboration with the clinical psychologist. So the family was working with BC Children’s Hospital, and at this time I was exposed to the facing fear, Facing Your Fears curriculum and became more interested in the work that both Krista and Dr. Kristen McFee were doing.
So from there I began kind of following Krista’s work, as you do, looking up her research papers, attended a couple of her workshops. I went to one at Pacific Autism Family Network and then another one through Autism Community Training. And then really, it was just a conversation. I contacted Krista, I invited her to be my clinical supervisor and thesis committee member.
And then from there, Krista just really kind of took me under her wing, spent a lot of time, dedicated a lot of her time to teaching me more about the theory and practical application that’s cognitive behavior therapy.
Yeah, it was a pleasure. So, I’m a clinical psychologist and I work at BC Children’s Hospital. I work in the Department of Psychology in the Division of Neurology and Neuropsychiatry clinic, which is actually a tertiary level care clinic for children and adolescents with neurodevelopmental differences, including autism. That serves the whole province.
And I, like was mentioned, I work at ABLE Developmental Clinic and I do assessment and treatment and consultation with really a wide variety of presentations for children and adolescents and even young adults. I treat anxiety and depression and OCD and social and attentional and emotional and behavioral challenges.
And about half of my practice is dedicated towards working with people with autism and their families. And I’m really passionate about supporting this population and I’ve done so in various capacities for over 20 years now, it’s been a long time. And so by history, I had research back friends in the area of treatments for youth with autism, particularly with anxiety.
And my dissertation was actually focused on examining of group cognitive behavior treatments for children with autism and anxiety, so it was particularly relevant for Monica. And then she approached me, it seemed like a really good fit and we had a great conversation and it was just sounded like something that would be well within my wheelhouse and really interesting.
And Monica was wonderful, so I couldn’t help but say, yes.
Awesome. Oh, that’s great. So it was a very natural origin to this research.
Now, something I wanted to highlight and just talk a little bit about at the beginning before we get into the nuts and bolts of your research was your collaboration together. Now as behavior analysts, Monica and I are BACB ethics code. In 2.10 highlights the importance of collaboration. And I’m just going to read it out quickly because I’d really liked that to be kind of the framework for our conversation moving forward.
So, behavior analysts collaborate with colleagues from their own and other professions in the best interest of clients and stakeholders. Behavior analysts address conflicts by compromising when possible, and always prioritize in the best interest of the client. Behavior analysts document all actions taken in these circumstances and their eventual outcomes.
Now, Krista, I’m sure for you, as a psychologist, your ethics code also has something similar. And so is that the case or if not, how is it a little bit different?
Yeah. So psychologists have a very rigorous and extensive code of conduct. I think it’s close to 72 pages or something like that. And it’s for the purposes of really protecting the public.
But definitely, we have a code section that says that I’m registering my seek to work with other professionals in a professional and cooperative manner for the good of the clients. And so we definitely do that all the time. We’re specifically trained in multidisciplinary collaboration and we’re very interested in working with other team members, be it behavior analysts, BIs, Speech-Language Phathologists, psychiatrists, OTs, you name it.
We’re definitely entrusted and prioritize it as part of our work.
So we’re both on the same page in terms of, I can, you know, see the both of you are interested in collaboration and value that. Now, and we know that we’re also ethically required both of these fields to collaborate not with just each other, but other professionals.
So perhaps you could share a little bit about your clinical roles on this project and how they maybe overlapped or differed a little bit. And maybe describe what the process was that you went through before deciding in treatment methods, for example, to use in the study.
Sure. Yeah. So like from the outset in the development of the research project, it really was on focusing on family-centered positive behavior support, and CBT – Cognitive Behavior Therapy, just due to the gap in the literature.
And some of the admirable work that I had read by Lauren Moskowitz and colleagues. So, most of the previous research for intellectual and developmental disability has focused more on specific phobias or more of a behavioral approach. And doesn’t really address the other elements, such as psychoeducation or cognitive restructuring.
And it was in my experience that I was noticing like, okay, behaviourally we can expose the child to this fear and work through it. And I’m sure most of us are behavior analysts who are listening, you’ve worked on like desensitization or program like that. But to me, it wasn’t really enough. You would be kind of addressing one fear, but not the core of the anxiety.
And I kind of relate it to like one of those whack-a-mole that you see at a fair, where like you’d target one fear and you’d get it down, and then maybe a new fear might pop up. And I was just kind of asking myself, so like why when the learner’s profile gets more complex in the sense that you’re adding a comorbid diagnosis of maybe intellectual and developmental disability? Are we kind of simplifying our approach to just behavioral rather than enhancing it and adding in more or continuing to modify?
So CBT’s full of like really great strategies and we know it’s effective when it’s modified for the ASD population. So the goal was to kind of see if we could like stretch it a little bit further to more populations, but then also kind of bringing in that family-centered approach of can we empower the parents to implement it so that when a new fear does kind of arrive or pop up, that they have the tools to support their child?
And then with this family-centered approach, it allowed us to identify a routine where this anxiety was occurring. That gave us a framework to follow, to give such comprehensive support for the child.
And then for Krista, for her role, I guess you can speak to the clinical supervisor element?
For sure. Yeah. So, my job was really to support Monica in bringing about the theory and the application of CBT. And just it in the context of an individual with autism and intellectual disability, actually moderate intellectual developmental disorder. So, you know, overall, it was just a really delightful experience working with Monica.
She did such an outstanding job on her thesis going above and beyond what was expected. It was a really, truly impressive undertaking. It took multiple years to complete. And so we were all meeting on the regular for quite a while, and we got a chance to really collaborate, I would say on a pretty deep level.
Yeah, I would agree.
So were there times, I mean, this sounds like very positive. I’m just curious, like, were there times when you didn’t agree on treatment suggestions or ways of putting forth you know, moving forward in the research? And if so, how did you compromise or come to some sort of mutually agreeable conclusion?
Yeah, I wouldn’t say that we didn’t agree. There was definitely competing ideas that came up occasionally in deciding kind of how to address an issue. But it wasn’t necessarily with like the family-centered positive behavior support versus cognitive behavior therapy or psychology-based approach. It was more research versus clinical practice.
So, researchers with families is really complex and requires lots of flexibility within your study. As Krista mentioned, it took a couple of years to complete this study. And throughout the research process, yes, we met regularly. We met, usually bi-weekly, and had to make several adjustments throughout. But just some examples of like research versus clinical was initially deciding how many research targets to work on.
So initially we used the family-centered process to guide it, which came up that the child had both a fear of dogs and a social fear of other children. And since we were using this family-centered positive behavior support approach, the aim was to target the entire routine as one, which came with two fears.
We initially started that way and it was pretty clear from the child that it was too challenging. She initially started to say that she didn’t want to go to the park anymore. So we had to kind of backstep and troubleshoot with Krista, which is where she gave some of her clinical recommendations was that maybe don’t start with two fears at a time.
Another thing I remember her saying is like, don’t pick the biggest, baddest fear on the block, which for that child was dogs. So we ended up deciding to drop the dogs, plan to target that later, and focus just on the social element, the social anxiety there. Another example was just how many baseline points for needed.
So in research, you’re required to collect a minimum of three to five data points. But that’s not necessarily what would occur in clinical practice. So we had to go and we had to expose the child to her fear a number of times before we could even implement the intervention. So there was some negotiation there to collect the minimum number required.
And then I think the last one probably is really the need for the observation recording. So again, this is the research versus clinical. From a research perspective, we need to have a recording or an observation session. But for the child, she really needed that opportunity to build some behavioral momentum before it occurred.
So initially we went to the park routine with the idea that, as soon as we would arrive, we would, you know, run the session. We would run her exposure trial. But what we later found out after collaborating and discussing it was that, the child really needed a few opportunities. So we embedded kind of like practice sessions where she would go and she would work on like previously mastered steps within her anxiety hierarchy.
Or she would work on that target step, but with somebody who she was more comfortable with. So that was me versus strangers at the park. Yeah.
Really building that momentum.
Yeah. So I guess I have a particularly behavioral background for a psychologist, so we probably had even more in common because of that. But our professions already have a lot of overlap to them.
And what’s not overlapping, I think it’s really complimentary. So, I think what we did as a team was, you know, creating a really psychologically safe and collaborative environment right off the bat for all ideas to be shared, and discuss as a group and collaborative and respectful, and really come up with a hybrid approach that makes sense to support the family.
And they were our ultimate priority to support, not any individual collaborator. And so when we were able to capitalize on each other’s knowledge basis, we came up with like these dynamics, complex ways of solving problems that were creative and efficient and novel. And it was fun. And I think that the family was our first priority and we always met with that intention and we enjoyed sharing ideas and having some banter about what might be a good way of doing it, or just throwing all the ideas on the table.
And then as a team, deciding what sticks and that was wonderful.
I love that. So what I’m hearing, I guess, is like the main, the key thing there to some of your successes sounded like you went in both with the focus of the family in the center, and then that resulted in better problem solving and collaboration later on.
So when you reach those issues, maybe in the park, for example, or your baseline data points, and there was some discussion, you are already thinking – what is best for the family here? Not, you what is best for my ego or for my profession and, you know, the view of my profession?
Yeah. Or using a solo approach. Yeah.
Yeah. That’s awesome. That’s so great and very practical.
Now I’m curious about if there’s anything that you learned in this process that you would have done differently in regards to your collaboration as professionals from two different, but complimentary fields, like any takeaways from this situation?
Honestly, I think it’s just that we need to do it more often in our respective fields that we don’t always jump to do it or have access or clients are busy. We have full caseloads and we’re not always prioritizing it. But actually even before there’s a pressing need to, it might be nice and we can just benefit from each other.
I know psychologists benefits so much from the advanced technical knowledge of behavior analysts. And it can be so helpful in tackling all sorts of challenging behaviors with many different types of presentations and not necessarily autism, and still like ADHD or ODD or intellectual developmental disorder or, you know, lots of different things.
So, you know, we can get, be better as psychologists in collaborating with our peers, but I also think that you know, the same is true of consultation with behavior analyst to psychologist. So psychologists are really highly trained to do complex things and do multiple layers of mental health comorbidities. And use proactive and reactive strategies to help the team implement strategies that support mental health, even before they get to a really highly and clinically problematic place.
Our treatments are really complimentary, so we can support other team members in implementing parts of the treatment. And, you know, in that way it can be really cost-effective for families to have a psychologist in the consultation role.
And Dr. Lucyshyn always described it a little bit like a force multiplier, and I think it’s true. It’s a wonderful compliment for our profession, I think. But I think, you know, considering psychology involvement when things are particularly complex or, you know, there’s a treatment-resistant case or it’s, there’s multiple mental health comorbidities or when you’re working on social skills and you’re not quite so sure if it’s foraying too far into the area of social anxiety. And you might need some supports in kind of marrying the two and treatments. Is it RRBs or is it a little flavor of OCD creeping in there?
Like these things psychologists are really well-trained in helping tease out and helping kind of develop a wraparound treatment approach, to help with all of those things. So, sometimes consultation can be helpful.
Anything to add from your end, Monica?
I was just, I would just highlight the importance not only from a research perspective but also clinically. It really wasn’t hard to do once I kind of reached out, like we mentioned earlier, it happened very organically. It was just a conversation of me approaching Krista and just asking for her time, asking for a little bit of support and mentorship, and then it grew into something bigger.
And the process was really enjoyable from my perspective, too. Krista has dedicated a lot of time to teaching me and, you know, I just really appreciate it. She’s a wealth of knowledge and I’ve been so fortunate to have it shared with me.
That’s so great. Wow. I’m so thankful just to hear your perspectives on this, cause I feel like this is such a great example of not just ethical, but like positive collaboration. So, so great.
Now that we’ve heard a bit, quite a bit about your collaboration can we shift a little bit more towards your specific work?
So, for starter is just to set up some basic terms. I know anxiety is thrown around all the time and that the definition of anxiety can sometimes be a bit nebulous as a term. So could we define, maybe from your perspective and your experience — what is anxiety? And more specifically, what made you look for signs of anxiety in an individual with IDD, specifically?
Yeah, that’s a really good question.
So you’re entirely right. Anxiety has become such a common term that we hear so many people discuss. And for good reason, we all experience anxiety. Anxiety is part of normal child development and just the human experience in general. Just to highlight that it’s, like it’s totally normal and it’s adaptive.
We need anxiety as a species to help us when we are in real danger. And most children and adults will experience forms of anxiety related to specific challenges in different stages of their life. So you might see some separation anxiety for children when they’re first starting school or going to daycare.
There might be some performance anxiety related to taking tests or mild forms of social anxiety when entering high school or presenting in front of peers or colleagues. But when we’re looking at an anxiety disorder, this fear or worry really becomes so challenging that it interrupts the child’s ability to complete tasks that are a value to them, or to even function on a day-to-day basis, which this is really Krista’s wheelhouse.
Yeah. So, I guess I would like to just highlight that Monica is right. Certain types of anxiety are expected over the normal course of development. For example, separation anxieties occurs in infancy. And then environmental fear of like fear of the dark comes online around two to three years old, or the fear of animals.
And then you get like the fear of imaginary things and a form of slightly more abstract around four or five, like monsters or the fear of death. More complex fear is developed into elementary school, such as social fears or generalized fears. And then adolescent, social anxiety becomes a lot more common when the fear of rejection or negative peer evaluation really comes online and becomes way more important.
So I do want to highlight that a certain amount of this is developmentally normal, but anxiety itself involves the anticipation or perception of threat or danger that’s often dealt with by avoiding. So anxiety and avoidance are very best friends and they run off into the sunset together and just really feed off of each other.
And there’s actually many different types of anxiety and we’ll get into all of them today, but separation, social, specific phobias, panic, generalized anxiety disorder, et cetera. So it’s not just as simple as just anxiety is one great big thing. It’s separated into different types of anxieties that we treat a little bit differently.
But I agree with Monica about it being a problem, only when it’s functionally impairing. So an example of this could be like you have a spider phobia or a fear of spiders. That’s not important to treat right away because who would stop to treat a fear of spiders necessarily? It might just even feed over time as the child grows up.
But if it starts to get in the way of daily life, like now you can’t go to the park and it’s sunny, or you can’t have a picnic with your family, or your best friend is having a birthday at a parking. You’re not going because there could be a spider there, or now you can’t go into the garage because you’re afraid of any spider.
So you can’t get into the car, so the mom has to pull out the car and you have to get in the car outside of the garage like that starts to become more and more impairing. And that’s when you would start to treat it. But I will say that treating it early so it doesn’t you don’t wait for it to be more impaired. And the avoidance strategy of coping becomes more and more trenched is important.
And for the second part of your question, like we already know that children without intellectual disability, with autism, have really high levels of anxiety. Generally, it’s up to 85% in some estimates, but most of times it hits 150%.
And some research has been done with children with autism, with intellectual disability, and initial estimates are approximately 30% to 40% in that population. But understanding anxiety in this population and our ability to detect it in this population is limited and more complex, because of the challenges and self-enough awareness that can happen with this population or communication or cognitive functioning. Such as like abstract thinking or future-oriented thinking, or even social thinking that gets more complex.
So for in this population with intellectual developmental disorder, anxiety may be associated with an increase of avoidance, maybe sometimes more challenging behaviors, physical symptoms an increase in stereotypes, which all just serve to mask the anxiety in this population and make it harder to see it as a route of maybe some of the problems that we might be seeing on the surface, like the topography and what’s really underneath it.
So, it’s a challenge.
Yeah. Yeah. Interesting. Yeah, way more complex, for sure. But I think those are some really practical takeaways in terms of things to be looking for.
So social anxiety, in particular, I guess you did touch on this a little bit just now in terms of the masking. What might the social anxiety look like in a child with an intellectual disability?
So I think I’ll start off by seeing that social anxiety can inherently be part of having difficulties with social communication and social interaction. And it can be challenging or stressful to participate in social environments when you’re missing out on opportunities for the social development and social success could be elusive.
And so we diagnose a social anxiety disorder when it kind of goes above and beyond what kind of we expect it for a particular group. And the full spectrum of social anxiety is most often seen in children without intellectual disabilities, cause they’re more attuned to that social evaluation or social perspective-taking and awareness, that self-awareness.
And they’re more able to start to worry about what others thinking about them in the possible scrutiny piece. And children with intellectual disability, you may experience some social anxiety, but that might not be quite as cognitively nuanced or complex. And their view generally to have a little bit, be a little bit more protected from social anxiety, with more concrete and less abstract cognitive abilities.
But individuals with intellectual developmental disorder may definitely still find groups, attending groups stressful, or talking to new people, or demonstrating inability in front of the class or there, so they’re not just entirely protected from experience in social anxiety. That’s not what I’m saying at all. But their awareness of social evaluation, anticipation judgment or abstract thinking such as worrying about what things could happen in the future is not as relevant in that case.
And people with intellectual disabilities, we might expect to see more concrete types of anxiety, like phobias fears of needles, for example. Separation anxiety, sensory-based fears, like the fear of loud noises or crowded places, and those types of things.
Interesting. Okay, so it has a little bit different there. It tends to be a bit more concrete, but I think I hear you also saying, I think that some of those concrete things can also be paired with social situations as well. So, they’re not fully protected from social anxiety, even though they might not even be, might not be thinking about social evaluation and things of that nature.
So, interesting. Yeah. It’s quite complex.
So, I guess that brings us to understanding, so if we talk about, you know, understanding what this might look like, how do we treat someone with this profile? With multiple diagnoses, like intellectual disability, autism, and anxiety. What does the research tell us about those best practices for treatment?
So CBT is an evidence-based treatment for children with anxiety and it’s been found for effective for autism. So we definitely know that. And for intellectual disability, we’d modify the protocol even more than we do for kids on the spectrum, and we’ll talk about that upcoming.
But CBT really focuses on identifying and modifying problematic thinking patterns and beliefs and challenging behavior like avoidance that serves to maintain anxiety.
So I’m not sure if your listeners have heard or about, or seeing the CBT triangle before? It basically has thoughts and feelings and behaviors written at each point of the triangle and our intervention touches on each of these categories. So in terms of psychoeducation, we might get them to identify anxiety in their body and how it’s expressed physically. Or learn about real dangers versus false alarms, or learn about problem-solving.
For cognitive restructuring, they might help them evaluate their thoughts or, you know, identify different thinking traps that might be, you know, hanging them up in a certain area or having engaged in more helpful self-taught. We learned behavioral strategies, which can be like coping strategies as well to emotionally regulate by deep breathing or progressive muscle relaxation.
And we also implement exposure hierarchies that are really just aimed at reducing avoidance. And so just like systematic desensitization involves exposure to a feared stimulus, step-by-step to facilitate habituation and extinction of the avoidance behavior. And that’s like CBT in a nutshell.
That’s actually really helpful.
I just think that’s helpful because I think Monica, you probably attest it like most BCBAs, I don’t think have a good grasp of CBT. I mean, maybe we’re loosely familiar with it, but I think that’s, yeah, a helpful nutshell of CBT. So, thanks. Yeah.
Monica, anything to add there?
Yeah, I would just to add on, you’re right that we have like a loose understanding of CBT or at a very basic level.
And what the research really tells us is that yeah, CBT is effective. It’s effective for neuro-typical children. It’s effective when modified for the ASD population, but it hasn’t yet branched to intellectual and developmental disability. That’s where it’s kind of stayed in that just exposure. Right?
So that’s where there is some research coming out. And I mentioned Moscowitz earlier, but kind of combining that family-centered positive behavior support. So, family-centered positive behavior support has a really strong research base in the treatment of problem behavior. So in our study, we referred to this as anxiety-related problem behavior.
So just meaning that the behavior was more frequent in the presence of specific stimuli or specific items, meeting more so the diagnostic criteria for a phobia. So if you’re unfamiliar with family-centered positive behavior support, it’s just that it’s a science-based practice that focuses on family values to improve quality of life for those you’re working with.
And there’s a really big emphasis on empowering the educators, family members, and other key stakeholders to kind of achieve positive outcomes by implementing primarily preventative teaching and positive reinforcement strategies. And that’s where we really embedded the CBT. So the research really to answer your question in extending it to intellectual developmental disability, autism and anxiety is really just merging.
It’s just starting to come about, and it’s quite limited to only a few studies.
So was that part of, I’m just curious, was that part of your thinking and that you want to build into that body of research, which is why you get this study?
Yes, definitely. That was kind of the main research question. Like if we take the literature on positive behavior support and the literature on cognitive behavior therapy, how can we bring the two together to kind of make this more comprehensive support plan to support this unique population?
That’s fantastic. And can I just ask, do you have plans to have this published? Because as we know, it’s so important to like grow that body of research before something is really considered truly evidence-based. If you’re drawing all these other evidence-based practices, putting them together, you know, do you hope to be part of these, like the contributor to this growing body of research?
Yes, we, we hope and we intend to publish, but that process has not started yet.
Yes, but we do plan. That’s the long-term plans is to publish.
Okay, so you presented at BC ABA. Are there other conferences or platforms you plan to be sharing your work?
Yeah, we, Dr. Lucyshyn and I just actually returned from San Diego last week. We presented for the Association for Positive Behavior Support. But more exciting, upcoming is we’re attending the European Society of Medicine’s General Assembly, which is happening this August in Madrid.
And there we’re really going to be focusing on both our study, but also highlighting the work of the late Karen Kester, which her research, she just finished her PhD through UBC and her research was focusing on cognitive behavior therapy to treat anxiety among children with ASD.
So she conducted both a systematic review, but she also implemented facing your fears within the school system. So, she did some very important work there in the field of autism and anxiety.
Awesome. That’s great. Well, I hope that conference goes well.
So I guess just to bring it back a little bit, so yes, we’ve discussed where the current research is, or the lack thereof. What did that look like in your own study in terms of implementing kind of what the research currently says from like pulling together to create your study?
Yeah, what it really looked like was just like a complete merging of the strategies.
So with family-centered positive behavior support, we use something called a competing behaviors pathway diagram. And this really guided our plan in developing the strategies, so the strategies were based on setting events. So what sets the stage for problem behavior, antecedent triggers of what occurs immediately before, teaching strategies and then consequence strategies.
So what this looked like was for setting event strategies, we included psychoeducation. This was both for the mother and the child. We broke it down into five different modules, which Krista and I collaborated on creating all that material. Also based off of like modification recommendations from the literature for individuals with ASD.
So the modules covered things like — what is anxiety? What does it look like? We introduce the child to different relaxation strategies and also how to break down her fear into smaller, more manageable steps. For antecedent strategies, we use some modified cognitive restructuring from the CBT literature, or if you wanted to look at it on the other hand, from the family-centered positive behavior support, it was positive contingency statements.
So it was much of the same thing, just using different language. So it could have been like getting the child to say, okay, first I do this step. Or I complete my brave challenge, which is what she referred to it as. And then I get my prize or, and then I get my Calico critter, specific item that I’m hoping to receive.
For teaching strategies, we used graduated exposure. So that was the introduction of the anxiety hierarchy. So we had 10 steps for her to work through. We incorporated repeated practice and behavioral momentum, so she would do easy. She would go and practice like previously mastered steps, which were easier for her before we would introduce the hard one, which was the challenge for that day.
And then of course there was consequence strategies in place. And the main one was that she was reinforced for her brave behavior. Every time she faced her fears, she would receive a reward. There was always the option. So if she was feeling nervous or she wasn’t ready, she always had the option to go back and do a previously mastered step and she would still receive reinforcement.
So I know Krista mentioned earlier about like anxiety being kind of fueled from escape. So we didn’t want to give like full escape from the fear and teach, like that’s how we get out. But then we also wanted to warrant that, like, if today’s too hard, we can go back to something easier and we’re still facing our fears.
Awesome. Those are some really practical ways of describing how that, yeah, how that played out in your research.
So you’ve read the research literature on modified CBT as a treatment tool for individuals with autism, IDD, and anxiety. What is the research showing in terms of efficacy of this treatment process for individuals with this profile right now?
Like it’s, you’re saying there’s not a lot, but what is it showing specifically? Like the little bits of research that are out there.
Yeah, I would say to highlight the research that out there is really focusing on the modifications that have been introduced. So Moore and Davis, as well as Attwood and Scarpa have given some pretty concrete recommendations on the modification trends.
What is effective when we’re modifying cognitive behavior therapy? So some of the suggestions they’ve given is, like the use of concrete or visual supports. So the examples are like using visual worksheets, using role play. We used a little bit of like behavioral skills training in our intervention. There was lots of hands-on activities, so really engaging the child in the process.
Another major recommendation is increased parent involvement. And we’ll talk about this a little bit later as well when you ask about some practical strategies. It can increase the understanding of the therapeutic process. It may help facilitate treatment gains more through a home-based practice.
So parents are given the skills and they can practice it more at home to kind of give the child more exposure to the process. And then it can also aid in generalizations. So rather than learning the skill, you know, at the clinic with the psychologist, the parents are now able to reinforce it and practice it at home.
Or maybe where the fear actually shows up, whether it be at the park or at the pool. And then also using child specific interests. So we want to incorporate more motivation and engagement in the treatment. And we did a lot of that within our study was everything really incorporated cats. Like when we talk about facing her fears are breaking down into an anxiety hierarchy or developing exposure steps.
We used the process of getting a cat to take a bath. What are some smaller steps to get that cat into the bath? Maybe it’s dipping just one toe in or using a wet cloth to wipe the cat down. And that really increased the child’s buy-in and interest in the process.
That’s awesome. I love that. Like seemingly so simple, but if you saw greater engagement, that’s so awesome. I just also like the image of a cat taking a bath. It’s just…
Yeah and Monica did a great job at that. Like she was able to really meet with that girl’s interests and kind of encourage her to continue through the, you know, a really strong therapeutic relationship that they built overtime.
I will add a few more modifications I think that are helpful. I think it’s also not only working on a hierarchy to address anxiety but at the same time working on problems associated with autism. For example, in this case like social skills and communication challenges that can be, play a role in the expression of the anxiety. It’s also working on exposure practice in real life settings.
So sometimes we might do it in an imaginal way or kind of removed from the actual situation, but doing it in a real-life way is really helpful for this population. And just more opportunities to generalize the skills. Modifications are often implemented on an individual basis by clinicians based on what each child really needs.
And that’s even more true with people with intellectual disabilities. For children with intellectual developmental disorder, we might do more things to further simplify the language of visual strategies. We might do, as psychologists, we call it cBT, so more focused on behavior and exposure steps, more rehearsal or repetition.
A de-emphasizing of the cognitive component sometimes, a more repetition of steps, greater focus on building behavioral momentum. Even in different application of reinforcers, like even more frequently or more parental involvement, like Monica’s highlighted. And yeah those types of things there’s only preliminary support in the research, but we’re already examining those things and using them.
That’s awesome. So there’s many options. I like, it sounds to me like there’s a whole slew of modifications that can be done based on the client. And they think you highlighted that really is based on the needs of that individual. So that’s great that any clinician, you know, has those options to think about tweaks that are useful for that person.
So, did you find, just to kind wrap it up a little bit. So in your experience or your research and working together, are there some practical takeaways that you’ve learned that you would want to share with families or educators who maybe have students who are experiencing symptoms of anxiety and have autism and IDD?
So have that profile that you’ve worked with. And I’ll just mention for listeners though that, you know, hopefully nobody will take this as clinical advice, but rather just as a starting point for seeking additional clinical help, if possible. So just wondering about your takeaways from your perspective.
Yeah. I think like learning to manage your anxiety takes a lot of work. For us, like one of the takeaways was that we didn’t have a lot of opportunities for exposure just in the nature of the routine that we were working on only occurred once per week. So getting parent involvement was really beneficial.
So a practical takeaway is really like modeling this behavior for your child. So when you’re out, you’re kind of modeling your own bravery and your own self-regulation in the moment. So this could be an example of like telling your child, you know, I’m feeling a little bit scared to go to the doctor, but I’m going to practice taking deep breaths or I’m going to do this.
I’m going to go for a short walk to help calm myself before we go inside. The other thing would be like encouraging and rewarding it. So facing your fears is hard work, right? So if a child goes and they’re doing something that’s scary, you want to be like reinforcing, acknowledging, and validating for the child that this is scary.
What they’re doing is hard. So that could be something like telling your child, you know, I can tell you’re feeling scared, but you’re doing so well. You’re doing so great facing your fears or whatever kind of the languages that you use at home. And then whether there be some sort of like additional reinforcement after that, maybe you go do a special activity together or whatever it may be for your child.
Another one is just the visual components. So if your child has, let’s say a fear of going to the dentist. A very practical strategy could be to get photos of the dentist office beforehand. Maybe get some materials or some pictures, so you have an idea of what the process is going to look like to ease some of that anxiety for your child. Maybe it’s a story that’s walking them through the steps that they’re going to be doing.
Yeah, Krista, would you have more to add?
So lovely. I think that anxiety isn’t always logical. And so sometimes, you know, as a parent, it’s just about communication of the belief in your child’s ability to cope through this, and you’re there with them and practicing together. And not waiting too long to seek consultation.
So that’s, it’s totally overwhelming and tearing apart your family before you gets some extra help. Right? I think a bit about anxiety in terms of like, just even a general escalation cycle with like green is calm and yellow is a bit anxious, but still coping. Orange is starting to become more dysregulated and red is just highly, completely overwhelmed, and shut down.
And most of our work needs to be done proactively and like the green and yellow zone to be best supportive. And, you know, psychoeducation about anxiety or a relaxation training or learning about helpful thinking strategies or even finding ways to practice facing fears and small sets are all helpful to do at early signs of anxiety when it’s pretty low. No one loves to be super stressed out and hear the words, just take a deep breath.
Let’s, you’re too far gone to just implement it that quickly. And so a lot of that work needs to be done earlier. So having a proactive and reactive strategy for dealing with anxiety, just like we do with behavior. I think it’s something that’s an important thing to consider.
That’s great. Those are really important considerations, I think. Very practical thoughts for parents and educators. So, thank you.
just before you wrap up, do you have any resources that are geared towards families or educators, or even, you know, other professionals that are maybe seeking resources for clients of this profile that are specific to someone with autism and IDD?
Yeah. So in BC, we’re fortunate to have a lot of great resources. And so we have the Kelty Mental Health website, which is a resource hosted through Children’s Hospital that has a lot of different parent resources on there. Anxiety Canada is a wonderful website to get started on some basic psychoeducation around anxiety.
And it’s got sections on that website for both parents supporting their children and for youth supporting themselves. More kind of teenagers, but it’s a wonderful resource and has a lot of CBT information on there. The BC Children’s Center or Learning Resource Library is also another good one that Monica suggested.
And if you need some supports contacting your local psychologist or child and youth with mental health needs they have offices that provide supports and treatments. I will say they have a bit of a wait, so getting on their lists early is important. But there’s a lot of resources available in BC.
That’s great. And are there, I guess, can I ask, do you have any websites, for example, if we have listeners from outside of BC. What would be the best way to access mental health services online? Like, I guess you mentioned like there’s information on Kelty and Anxiety Canada. So anybody can access that, is that correct?
Yeah. So, the actual accessing treatment services can be done through CYMH – Child and Youth Mental Health needs, and also privately through psychologists in your area. And there’s actually a myriad of other ways if you search for psychology in my area. A lot of different things will come up. There’s like Foundry provides a lot of supports and other clinics around the Lower Mainland, as well.
That’s so helpful. Well, thank you so much for this conversation, it was so interesting to learn more about your work. And I really just loved hearing about how you work together on this project. I think you had so many practical examples that are examples to other professionals about how you can work together really effectively. And I love that you’re trying to build this body of research in this area where there is a lack.
So, thank you so much for joining me. I guess a final thing is, before you go, could you mention where listeners maybe could find out a little bit more about your work and I can link this in the show notes. So if there’s anything, you know, social media-wise, like I know Monica, you have a page, like link that in or even just finding out more about your research.
Is there anywhere that people can figure that out, or see that?
I don’t have a website up or social media going at the moment, but if that changes in the future, I will let you know. And I am so happy to come back and talk about other topics that might be relevant.
But I’m available by email and I can send you my email and I’m happy to have people email me.
Okay. I’ll link that in. That’s great.
Yeah. I don’t have anything other than the social media account. Yeah, you’re talking to two dinosaurs who aren’t very active online.
Something we should change for the future.
Even mine, I think I, like last post I posted today to make a point, but, yeah.
That’s okay. And I guess your research will eventually be published, so we’re not even quite there yet, but if and when that happens down the road, I can still link this back because this will just be on the internet. So…
Amazing. Thank you so much.
Well, thank you so much. This was such a great conversation. I really appreciate it.
Thank you so much.
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