Interview between Speaker 1 (Meg) and Speaker 2 (Elizabeth)
[Introductory music]
Welcome to the Two Sides of the Spectrum Podcast. A place where we explore research, amplify autistic voices, and change the way we think about autism in life, and in occupational therapy practice. I’m Meg Proctor from learnplaythrive.com.
Meg: Before we get started, a quick note on language. On this podcast, you’ll hear me and many of my guests use identity-affirming language. That means we say, ‘autistic person,’ rather than, ‘person with autism’. What we’re hearing from the majority of autistic adults is that autism is a part of their identity that they don’t need to be separated from. Autism is not a disease, it’s a different way of thinking and learning. Join me in embracing the word ‘autistic’ to help reduce the stigma.
Elizabeth is an autistic adult, licensed occupational therapist, Trauma Center Trauma Sensitive Yoga Facilitator, and owner of Heart of Gold, Pittsburgh Therapy Project. Elizabeth specializes in emotional-relational development, sensory integration, family-based occupational therapy support, and trauma-sensitivity. And Elizabeth is passionate about helping families to understand their children’s developmental and individual differences, as well as empowering adults who navigate the world with chronic fatigue, pain, and sensory processing differences. In this episode, Elizabeth and I talk about the relationship between autism and trauma, and trauma-sensitive strategies we can all be using in our work with kids on the spectrum. Hold on tight. This episode may inspire you re-think so much about your work. Here’s the interview.
Hi, Elizabeth! I’m so happy to have you on the podcast.
Elizabeth: Hi, Meg, thank you.
Meg: Yeah! So, you have such an interesting business model and so much insight to share with other therapists about trauma-sensitive care, and I can’t wait to dive into all of it. But before we dive in, can you give us a little overview of the work that you are doing right now?
Elizabeth: Yeah, sure. Right now, I work independently with families to help improve understanding of their child’s emotional-relational development, and also their child’s sensory processing differences, and how this may have affected their development, and how it might affect their participation in daily activities like eating, or doing things as a family. I also support adults with sensory processing differences that are affecting their self-care. Maybe that they are having difficulty regulating their energy levels, or things that are required to participate in their daily activities the way that they’d like to. Also, aside from OT, I facilitate Trauma Centre Trauma Sensitive Yoga groups for adult complex trauma survivors, and I’m currently a Doctoral student in Infant and Early Childhood Development with emphasis on mental health, developmental disabilities, and the Developmental, Individual differences, Relationship-based (DIR) model.
Meg: That is so much and I can’t wait to dive into each of those interesting things that you’re doing. So, Trauma Centre Trauma Sensitive Yoga is evidence-based for complex trauma survivors. And you are an autistic OT who works with autistic adults. So, tell me what’s the relationship between autism and trauma?
Elizabeth: Yeah, so for people who are autistic, oftentimes even just existing in the world is a challenge, and maybe traumatic because our bodies don’t necessarily fit in to a neurotypical world. You can say it’s overwhelming to the point of being traumatic. So, when I think about occupational therapy, I think about the occupation of being. Just being able to be here before you move to doing some kind of functional tasks that you need to do to take care of yourself. Some of the adults that I have worked with have told me that they spent a lot of time trying not to be in their body because it’s a traumatic experience to be connected to their body in a world that’s not accommodating, or going for them.
Meg: Next, you’re gonna hear Elizabeth talk about the five core elements of trauma-sensitive yoga. Those are invitational language, choice making, interoception, shared authentic experience, and non-coercion. I’ll link to more information about them in the show notes. She’s going to talk about that, and so much more after this quick break.
[Intermission begins]
If you’re a professional working with kids on the autism spectrum, I’m sure you set out to work in a way that reflects your values. But far too often in our work, we don’t realize how big our blind spots are. We may find that our model is medical, rather than social; neurodiversity is suppressed, rather than celebrated; our language is outdated; our interventions are compliance-based, rather than strengths-based; and we may not be contributing positively to our clients sense of autonomy and identity. That’s why I created the free Five Day OT and Autism Challenge. When you register for the challenge, you’ll get daily emails for five days with articles and videos that are absolutely paradigm-shifting, and you’ll get access to the most incredible private Facebook community where everyone reflects on their takeaways from the learning assignments. It takes fewer than 30 minutes a day, and you’ll be surprised to find what changes it inspires in your work. Is your work aligned with your values? Are you ready for the challenge? Visit learnplaythrive.com/challenge to register.
[Intermission ends]
Elizabeth: There’s five core elements of TCTSY. And so as a facilitator, I’ve learned to incorporate all those elements into the practice so that it can be accessible for people with complex trauma. And some of the things that we do, we include things like invitational language, every aspect of participating in group is a choice. We offer choices, and so the practice isn’t directive.
Meg: And so what is — give me an example, what is invitational language?
Elizabeth: Sure. So, invitational language would be, if you’re getting started with a practice, you might say to your participants, “When you’re ready, you might find a seated shape on the floor that feels useful for you,” instead of saying, “We’re going to start seated.”
Meg: You know, I’ve heard that language in yoga class before and I never thought about why it might be the language that was being chosen. How is that helpful for folks who have trauma?
Elizabeth: So, for folks who have trauma, it’s important for facilitators to be mindful of the power dynamic between a facilitator and a participant. And so, offering everything in the group as an invitation or a choice is a way to balance those power dynamics, so that the participant is in a place where they can decide whether or not they would like to engage in what’s being offered.
Meg: I love that. So, we’ve talked a lot on the podcast about moving away from coercive practices like withholding a child’s interest, or moving their body for them. And this is taking it a step further for a yoga practice to invite them to join rather than tell them to join. And I’m thinking about balancing that with wanting to be clear and easy to understand with our language for folks who might have language processing challenges. So, how do you — when you’re working with autistic adults in your yoga classes, how does that invitational language work for you and for them?
Elizabeth: Mostly, I would say I work with autistic adults one-on-one, and sometimes if it’s their choice, we include TCTSY in their one-on-one OT. So, they might identify as autistic, or maybe neurodivergent, or disabled. And so one way I do that is by making choices really clear, which is recommended by TCTSY for complex trauma survivors. When I first started facilitating trauma-sensitive yoga, I thought that it was important to make every choice available, but there is a way to kind of make it a little more clear. So, you might say, “If you like, you know, you might explore rolling your shoulders a little bit,” or, “You might explore something that’s your choice.” You’re giving like two choices that are available, but again, there’s a lot of different ways that those could be interpreted to meet somebody where they’re at.
Meg: All right, so let’s get to the other four core elements. Tell me about those.
Elizabeth: Sure. Yeah, so, one of them I feel like I already mentioned a bit is choice-making. You want to make sure that the participants are offered choices, and that you’re facilitating an environment where it’s okay to make a choice. I talked about invitational language and choice-making, and there are three others. So, one is shared authentic experience.
That means as a facilitator you participate in the practice with the participants, so you don’t maybe stand to the side or direct the practice, but you’re there embodying the practice with people. You also show up, you know, as authentically yourself; you are open about your boundaries and availability for participating in the practice. One way I do that is being clear with a group about how much time I have after the group to participate, and maybe saying hi, things like that.
There’s two other core elements. The fourth element is some interoception, or present moment experience. And so this is the element of understanding and connecting with what your body is experiencing in the moment. The facilitator gives little cues, like if you’re rolling your shoulders, an interoceptive cue might be, “If you’re rolling your shoulders, you might notice some sensation in your shoulders, or maybe you notice sensation somewhere in your body that comes up for you.” So, you’re cueing people in to what to notice, like what’s going on in their body. And then tying it back to the element of choice-making, you might say, “Based on the sensation, or what you notice coming up in your body, you might make a choice to maybe move your body in a different way or maybe continue, if this feels useful.”
And then the last core element is non-coercion. I feel like it wraps all the other elements kind of together by saying as a facilitator, I don’t want to be coercing people into doing what I think they should do for their practice. We’re not prescriptive, so I don’t say like, “Oh, maybe later this yoga model might help you feel more calm or something if you practice.”
We are committed to showing up with people in the present and not trying to prescribe what might happen in the future. Instead, we’re here in the present with them and we show up authentically in the present, and by committing to that, you feel that that is more trauma-sensitive than saying something that might happen in the future. You can’t really predict that or say that it’s gonna happen.
Meg: Got it. So, help me tie this into clinical OT practice, because many OTs are increasingly becoming aware of the importance of trauma-sensitive interventions and the presence of trauma in the lives of our clients. So, what are some good starting places for OTs to start approaching our work in the clinic, and the schools, in families homes from a trauma perspective?
Elizabeth: So, one thing I’ve learned from TCTSY is that trauma interventions should not be focused on regulating emotions necessarily. As a first start, we want to focus on addressing that disconnect between your mind and body, and facilitating an environment and a relationship where it’s safe for someone to maybe notice what’s going on for them in their body, in the present moment, and in facilitating a safe space to start rebuilding that bridge of being connected to yourself. I know sometimes I feel like currently that we’re so focused on emotional regulation that we miss some of these other important foundational capacities, particularly for people who are trauma survivors.
You know, we’re looking to build the capacity for noticing in body awareness, and then the capacity to make a choice based on what you notice in your body, and the capacity to kind of be, you know, with those emotions that come up. And so I feel like when we focus on emotional regulation, or always kind of achieving an optimal state of emotion, we’re missing the opportunity to be with someone and develop the ability to kind of be with them in an emotion that’s not as easy for everyone to be with.
Meg: What does that look like if you’re working with a child who is upset or becoming dysregulated for whatever reason, and maybe not a child with the language to share insight about what’s happening. What is being with them without overly focusing on achieving regulation look like?
Elizabeth: Yeah, I think trying to facilitate a safe space for them to have their feelings, me being there with them and telling them you understand in some way; maybe you’re communicating that through your body language, maybe you’re not trying to rush them to get to the next thing they need to do, or rush them to stop being upset. And of course, it’s important to make sure there’s a safe space for them to be upset in.
But I think it could look like sitting with them and slowing things down so that they could have some time to kind of be with themselves and notice what they’re feeling, and also that they’re getting to experience that in a relationship with someone else. And so they’re not alone in their meltdown, but they’re there with them with another person.
Meg: We’ve talked about in so many episodes how planned ignoring doesn’t resonate with many therapists and feels terrible to many parents, and that’s such a nice alternative to planned ignoring. It couldn’t really be more different from planned ignoring, or ignoring a child’s behavior so that they will stop doing it. Just sitting with them and being present with them, and making space for how they are doing in the moment, and showing them that you’re there, and you’re listening. I love that.
Elizabeth: Yeah, totally. And, you know, think about any person, it’s hard to get upset in front of other people for a lot of us. And so, as people supporting an autistic person who’s having a meltdown, building that capacity and normalizing that it’s okay to be upset — and especially to be upset and to lean on another person — I think it’s really important.
Meg: Yeah, this makes me think about we often hear from girls and women on the spectrum that they’ve learned to mask or to hide their autism, and to really be hyperaware of how they present over the course of their lives. And listening to you talk, I’m thinking about how that starts so young, where we’re trying to stop negative emotions and shape them into more desirable emotions from the non-autistic adult perspective. Is there a link there for you?
Elizabeth: Yeah, totally. I feel like I’ve had that exact experience. For me, I feel like a lot of my personal experience, like recalling masking and things like that, is just thinking that in most situations, there’s an optimal behavior that people would prefer to see. And I can just remember getting like little criticisms or little, you know, requests to do something else. So, “Oh, remember, don’t do that.” Yeah, and I think that it led to some, you know, really difficulty expressing emotion for me, instead of just kind of holding it all in often.
Meg: And that’s a really important and often unseen consequence of the way we respond to behaviors. That it’s teaching kids that their feelings are okay, rather than teaching them how to be present with their feelings; and eventually move towards a well-regulated place, I’m assuming, but without the pressure, and the criticism, and all of the like spiral of consequences of that that you’re describing. So, what else? What else can OTs consider when we’re thinking about trauma-sensitive practice?
Elizabeth: Sure. I think it’s really important to focus on childrens’ ability to make choices — that it’s okay if they have a choice in themselves. It may be communicating with their choices to you, and you might not quite understand yet what they’re choosing. But for people with trauma, oftentimes, they’ve been in a situation where it felt like there was no choice and their control was completely taken away.
And I do feel that often autistic people feel that way if they’re in an environment where people are not understanding of their needs or the support that might be helpful for them. And so I think it’s really important as you’re supporting someone to start to notice their own emotions, and feelings, and what’s going on for them, it’s important to also continue up the ladder to facilitating a safe space for people to notice them with their choices based on how they’re feeling.
Meg: That’s great. So, helping the child become more aware of how they’re feeling and then make a choice about what’s going to help them. Yeah, that sounds like such an important skill that all kids need to learn, especially kids who have had trauma, and especially autistic kids who have so many challenges in this neurotypical world.
Elizabeth: Yes, so it’s worth to say about when we focus on emotional regulation and trying to keep people in a place that is optimal or good, like green zone or something like that, we kind of miss the opportunity to develop the capacity in them and in ourselves as their support people, to be able to navigate rupture and repair with them. So, what are we going to do when inevitably, someone has a rupture like a breakdown, a meltdown, or a problem? I feel like it, you know, requires development in both sides — the person you’re supporting and yourself.
If you’re the support person, to be able to support both of your resiliency, and the inevitable problems of the world, and things that are going to come up in a person’s life. How do you navigate rupture and the repair cycle, and then as you continue doing that, the person you’re supporting begins to realize that you are someone that can — that is going to be there for them through rupture and repair. You become a more safe person, then, for them to have relationship with and be supported by.
Meg: Can you give me an example of what that might look like in the context of an OT session?
Elizabeth: Yeah, sure. So, maybe you have a child who knocks something over during OT. Like, you guys have built an obstacle course or something and it falls apart, and they’re upset that it broke, or it fell apart. And so, you know, maybe you’d be in there with them and supporting their ability to fix it if they like, or showing them that it can be fixed. Instead of, I don’t know, like offering some kind of consequence for the meltdown, or saying like, “We need to get — we need to calm down before we can play this game again,” or something.
Obviously you want to be there and support them to find a safe space, but I think instead of moving towards consequences or, “We need to be calm to be able to do things,” instead kind of showing that person you’re working with that there are solutions, there are things that you can do, and you’re there for them to help them with the thing that has just made them really upset.
Meg: Yeah, I love that example. So, you’re saying you’re working on an obstacle course, it crashes down, the child’s upset. And some of our instincts might be to say, “When you get your body calm, we can do the rice table,” or whatever it is that they are wanting to do. So, getting calm is a prerequisite for the next thing, we’re kind of withholding that from them until they get calm. Or, “It’s okay, you don’t have to feel sad,” and then trying to distract and redirect, really taking away from their emotions. But you’re saying, “There was this rupture; this thing we did together fell apart, but we can also repair it together. So, I’m going to sit with you through these feelings, and then I’m going to help you problem solve how we can fix it,” rather than redirect you, brush it under the table, or sort of punish you for having an emotional response. Does that sound right?
Elizabeth: Yeah, you’re really good at recapping it. Thank you. [Laughs] That was great. Yeah.
Meg: [Laughs] So, I want to circle back to something that that came up a little bit, which is that you approach your work not just as an OT but also as an autistic person living in this world that’s designed for neurotypical people. How does this experience help you understand trauma and your clients?
Elizabeth: So, I feel like being autistic helps me to understand how some people might be — the space they might be in looking for support from me, because I know that I am very hyperaware of how I present when I’m navigating the world, and I’m very uncomfortable with most medical appointments. You’re going to get any kind of support from, you know, a doctor or therapist, and I have a history of being really hyperaware of what I look like when I show up for that. So, I know that that creates stress for people. And for me, it’s led to like camouflaging and masking those traits, when really what I need is more information and some acceptance around who I am.
It’s even — I feel like it’s interfered with my work before I knew that I was autistic. Not wanting to show up and wanting to be perceived as like competent and confident in my ability to support people. And so when I learned that I was autistic, it really kind of removed some barriers for me that I was experiencing in trying to support you know other autistic people, because I wasn’t dedicating as much energy to try to camouflage and mask myself. So, in the world there’s just a lot of, you know, lack of information and acceptance of people who are autistic. And it leads then to us kind of needing more medical support than maybe we would have if there was more information, acceptance readily available.
Meg: I love that. There’s often a question that I see on Facebook groups and sometimes in sessions of parents saying, “Should I tell my child they’re autistic? They don’t know,” or, “When should I tell them?” And you’re saying, “When I found out I was autistic, it removed the barriers because I could start learning about myself, and accepting myself,” and coming from a place of acceptance and confidence, rather than this constant battle to fit in and meet these impossible goals and examples that you were always kind of striving for. So, it sounds like that’s really important for us to think about with young kids. How are we presenting autism to them so they can integrate it into their sense of self from as young of an age as possible.
Elizabeth: Yeah, I agree and, you know, how are we as an OT community or healthcare community at large like making it. You know, giving parents the tools they need to be able to do that, and the resources that they would feel safe and secure in sharing that kind of information with their child.
Meg: Talk to me a little bit about the amount of energy that it takes to do something as a neurodivergent person compared to what might be expected of you, and how that impacts your participation, and kind of spills over into how you understand your clients.
Elizabeth: So, yeah, I feel like there’s a couple things in my life that I feel like take up maybe more energy than another person who’s not autistic. I think like some social things with me, usually with new people I’m going to meet, maybe a new client or something like that. And then there’s different sensory processing things that kind of take more of my energy. Like, I don’t like to do the dishes, because it’s a noxious sensory experience. There’s other things — I try to think about it. Um, you know, during the day I have implemented different routines, so that I’m being aware to like continue to build my spoons up before I, you know, do different things.
Meg: I love this. Tell me about the spoons, what do ‘spoons’ mean here?
Elizabeth: Yeah. [Laugh] So, some people subscribe to ‘Spoons theory’ which is that, you know, I only have so many spoons available to do work during the day, or to do different things, and for an autistic person certain activities use up more spoons than another person. And then I need to, you know, clean those spoons before I’m ready to use them again. So, yeah, I know things like leaving admin tasks, like notes or things like that, leaving it and going like, “The longer I let it go, the more spoons it takes to get it done and then I’m kind of cutting into time that I could be using to take care of my spoons, or to relax again and break.”
Meg: Yeah, so the spoons are your energy. More souls that you can use, right. And it sounds like something that we hear for anybody with executive function challenges too. So, folks with ADHD who are non-autistic, leaving a project until it piles up and then it takes so much more energy to tackle it. And you’re saying that leaves you less time for actual restorative activities because you’re using up all of your spoons taking care of things.
Elizabeth: Yeah, exactly. Yeah, so I try to keep that in mind when I’m working with my clients because I know that they likely do the same thing. And so sometimes that means that we don’t meet as regularly. Maybe we’re meeting more on like a spiral time kind of thing, so that happening is predictably, but I think it’s important to stay in touch, you know, and to be understanding about that kind of thing.
Because especially now in the coronavirus pandemic, if I’m out of touch with someone for a little bit, I don’t know, like maybe they had to get a COVID test; maybe, you know, something has happened to someone they’re close with, so I just think it’s important when someone is not as responsive maybe to a certain type of communication, like maybe that form of communication requires a lot more spoons and they don’t have it right now.
Meg: That’s really interesting. I have not personally worked with adults in my OT career, but I worked at a clinic where another provider who was a cognitive behavioral therapist worked with adults, and we were always talking about this. The adults who are supporting themselves who have such difficulty with executive function and want to come to the appointments, and need the appointments, and don’t come to the appointments. And then, you know, call and say, “Oh, you know, these are all the reasons why I didn’t come,” and that’s hard in the time-obsessed world, in the time-for-money world where people aren’t getting paid if they don’t see their clients, in the world where clients are getting no-show fees if they don’t show up for their appointment. There’s so many things that aren’t set up for executive function differences. And I hear you saying that you have the ability to approach that openly, and flexibly, and in an understanding way.
This really goes back to the idea that the differences between autistic and non-autistic people aren’t that non-autistic people are good at a lot of things that autistic people are just bad at, that there are these differences, because what you were describing that you were able to do would be very hard for me. It would’ve be so hard for me to use that flexible, open, not time-obsessed, not medical model lens to understand my client, and it’s so important. So, I love that challenge and also that strength that you bring to your work.
I want to dive a little bit deeper into the energy piece, because energy conservation is something that we learned about in graduate school and kind of tend to apply it to physical disabilities. And I think about it, you know, a little bit for young children, or for children of any age with — and I’m sure for adults with alternating between things that use a lot of energy and things that are restful and restorative — but I have to admit that energy conservation is not usually at the front of my mind when working with young autistic clients, and it sounds like maybe it should be. So, tell me a little bit about when that can be important and what that might look like.
Elizabeth: Well, I think it goes back to scheduling and attending appointments. For some people who are really having difficulty, it requires energy to go to a medical appointment and get support, but, you know, attending that appointment might mean a whole host of like spoon-sucking things — like meeting with someone who is less than understanding, or maybe they’re very understanding, you know, we don’t know.
So, I think, and I work with adults, it’s been important to, for example, if someone wants to really develop a movement practice and, you know, does that mean they have to get out of bed to do the movement practice? Like, does that mean that they have to stand up to do the movement practice? Can we meet them where they’re at? Like maybe they need it before they get out of bed in the morning, and I’ve already expended energy. Maybe they want to practice a movement with themselves where they are. And so that might mean in a place that feels really restful for them.
I feel like that’s one example of accommodation, I mean, that kind of opened my mind to thinking like, “To do yoga or movement practice, like do you have to get a mat out and does it have to be a physical workout? Can it be something else?” Other things like, you know, for me, the dishes are noxious and I’ve had clients who say the dishes are noxious too, and it contributes to their continued cycle lack of energy because then they don’t want to be in the kitchen, and they don’t want to make themselves food that might give them energy. So, things like the long-handled dish wiper, or gloves, or things like that. What kind of tools can you have around the house to do things.
And I feel like some kids might benefit from that kind of thing too. Like maybe we’re not going to work through not wanting to touch anything wet, maybe that’s not in the child’s capacity right now, but it could. In the meantime, if your child and your family is choosing to work through that, could there be gloves, like could there be some other tool available so that your child doesn’t have to expend another spoon to do it the way you want to do it, or the way that you think it will be therapeutic.
Meg: Energy is such a nice lens for this. In the second episode of the podcast, Damian Milton talked about how he wished OTs would stop trying to desensitize kids to their sensory differences. And a lot of us kind of went, “But what about feeding? What about kids with very restrictive diets who, you know, might respond really well and open up their repertoire of foods that they eat?” Not a lot of therapists say, “I want to hear more about this, I don’t know what to think about this.”
And I love that lens that you’re putting on it, that for that child, it might already use more energy than they have to get through the meal so that they can have food in them, and now we’re asking them to push through noxious or aversive sensory experiences which is demanding even more of their energy.
So, can we put this energy overlay onto whatever lens we’re using and think, “Is this a moment that is a good opportunity to play a little bit at the edge, and see what they’re comfortable with, and what they’re ready for in a safe and supportive way? Or is this a moment that we help them wash their spoons so that they have enough spoons to eat.” Oh, I love that that metaphor tied in there in a more concrete way.
Elizabeth: Yeah.
Meg: Okay, so it’s really interesting learning about your lens that you bring as an autistic person who’s aware of things like trauma and energy use. Also as someone trained in trauma-specific interventions and in movement-based interventions, I’m curious how your perspective influences your work with parents and with families.
Elizabeth: Yeah, sure. So, when I think about working with parents and families, I feel like it’s really important to work with everyone involved with a child, because I think that work with the family system is really important. I think, as an autistic adult who is studying DIR as a doctoral student right now and, again, has that experience with the trauma-sensitive interventions, it’s been really important for me to help families understand their child in a different way, and kind of understand more about where they are developmentally, what some of their experiences might have influenced their functional activity participation right now, and what their child’s individual differences are. So, what is their child’s experience of the world and why have their efforts been not — kind of not realized in their attempt to support their child.
I think it’s really important to help parents to understand that it’s not their job to keep their child from melting down, or to keep them from being upset. And working on doing some more collaborative work with a clinical psychologist because I think sometimes we’re better together collaboratively in helping parents to work on maybe like an acceptance of where their child is. But really, I want to be able to help parents accompany their child through a meltdown, and to be there through the inevitable rupture and repair of life.
And then for parents to use themselves, you know, to help their child climb the developmental ladder of emotional-relational development. So, parents often, I think, have a good understanding of where they’d like their child to be, and really great goals for what they’d like to be able to do as a family. I think with my perspective, I’m there to help them figure out how they’re going to get to that goal with the acceptance piece, that this is who their child is, and this is the kind of support that they might need.
Meg: I love that shift. Many new therapists often come in with this feeling that they need to have a plan, and make a kid meet a goal, and fix something, and change something, and do strategies, and interventions. And there’s a shift that really needs to happen from that starting point of, “I’m anxious. Am I an imposter? Do I know what I’m doing?” to, “This is how my client exists in the world, this is how they think, this is who they are. And this is a perfectly okay place to start,” and be with them. And it doesn’t mean that I’m doing poorly at my job.
I learned the line from a mentor of mine when I was going through this as a newer OT of not really knowing how to respond when a child was having trouble during our session, especially if it was in response to something I said. “Oh, can I see what happens when you try to put your shoes on?”, and then that went really badly. And she said, “Why don’t you just say, ‘This is really hard. Is this what you’re seeing at home?’ And just acknowledge. Because the parents, this isn’t the first time they’ve seen it. They’re not expecting or needing to come into the session and have you not see what their child is dealing with in daily life,” and that shifted everything for me. When I could say, “This is really tough, I can see you really care about her, and want to help her, and be with her right now. Is this what usually happens when you ask her to put on her shoes? This is how she’s usually feeling in response to that?”
And the mom doesn’t say, “Wow, you sure are a crappy OT for not preventing that meltdown.” Ever. They say, “Yes! This is what I’m seeing all the time. I’m so glad you got to see it too.” And I hear you saying that we need to encourage that same shift for the parent from, “I’m the parent, I should have been able to prevent this, I should have been able to protect her from this, from these big feelings, I should have prevented it, I should teach him the skills so that he doesn’t have these big reactions,” to, “It’s okay that this is where you are. Is this how you feel a lot of the time? That seems really hard, let me be here with you.” It’s such a nice shift for us and for families. It takes the pressure off of us, and it allows kids to have somebody along with them for the ride. I really like that.
I wanted to ask you, too, before we move on. You mentioned DIR, can you explain what that is for folks who aren’t familiar?
Elizabeth: Yeah, I’m a doctoral student who’s studying DIR, and the DIR model is the Developmental, Individual Differences, and Relationship-based Model who was developed by Dr. Stanley Greenspan and Dr. Serena Wieder.
So, developmental — we look at where a child is at in their emotional-relational development, for the ‘D’. And so, we look at things like, is the child able to calm themselves or be calmed by another person? And in what scenarios does that happen? For example, maybe they can be calm at home in a familiar environment, but maybe there are certain environments or situations where that’s more difficult.
And then we look at their capacity to build a relationship with another adult, to participate in kind of back and forth sharing ideas and solving problems. And then on and on up through the other levels of emotional-relational development that I’m not gonna go into today. But for the ‘I’, we’ll look at a child’s individual differences. And so that could be their sensory processing differences, it could also be like their personality, their medical differences, temperament, cultural differences, kind of anything about a child that makes them uniquely themselves.
And then the ‘R’ component is a relationship-based approach. So, we take what we learn about a child from the ‘D’ and the ‘I’, and think how can we incorporate that understanding into their relationships with other people who are trying to support them.
Meg: Awesome, thank you. So, in making this shift, if you aren’t necessarily writing goals for a child to be calm and well-regulated, what is the sort of cascade of changes that that creates in the framework that you use with families, and how you approach your goals, and your intervention model when you’re working with families?
Elizabeth: Sure. I think it’s important to support parents’ competence and confidence in being able to address the difficulties that they’re experiencing with their child. I also think then there’s this shift that happens instead of a family continuing to see a therapist to improve their child’s ability to achieve some kind of ideal regulated state, which maybe is not going to happen or maybe is not in the best interest of that child or who they are as a person.
I think it’s also important to look and see what mutual aid community resources might be available that understands that family, or the family might find them useful. I guess maybe ways that the family can be plugged in to other members of the community with similar thinking and similar understanding. In the autistic community, there are some mutual aid efforts created in different communities where people can have disabled-run, disabled-led for disabled people. And the idea is that oftentimes maybe the medical system is not as understand of who we are, and they’re not as helpful.
And so I feel it’s important to have this foundation of community support available from people of the community who understand what it’s like to be autistic, or disabled, or to have sensory processing differences. And thinking about what kind of influence that can be in a person’s life if they have access to a community that’s understanding.
Meg: So, the idea is that everything you need as a family with an autistic child isn’t necessarily going to come from me, your OT, and we can think about this idea of mutual aid or aid that’s given freely without payment and is mutually beneficial to both of the parties engaged in it. Finding those opportunities, which some people might think, “We don’t have those in my town!” Well, especially now more than ever, you have access to anybody on the internet, and it’s a nice opportunity to be figuring out how to connect families and children to the people who are gonna build their kids up, and help them feel connected, and like part of a community, and supported in ways that we, especially non-autistic OTs, can’t be the one to do that.
Elizabeth: Yeah, like what you said, also about how some communities maybe don’t have, you know, a specific mutual aid group like that, but I just think it’s important, depending on where you work, to know what does the autistic community like. You know, where in your geographic region, and what kind of support might they be offering. And I also really like what you said about getting my family connected to like-minded adults that are going to be understanding about what they’re going through.
Meg: So, what does it do to your goals, if you’re not necessarily writing a goal for the child to be calm and well-regulated? What kind of goal might you write for a family who’s very concerned with their child’s emotional regulation?
Elizabeth: So, before I give an example of a goal, I want to say that for me this has been — this has meant moving away from insurance-provided OT for kids because insurance, I found, does want me to write a goal that is leading towards sort of a linear progress of emotional regulation to an optimal end. So, privately or independently, I write a goal. It might look like saying, ‘The family will improve their ability to identify whether or not their child is experiencing security in their relationship with them’. And then I might write a goal saying, ‘The family will identify strategies or resources that might help them to increase their child’s sense of security in their relationship with them’.
So, I feel like those kinds of things are the foundation to being able to make your child feel secure in your relationship with you, then they’re maybe more likely to take a risk, or approach a challenge in a relationship with you, something that’s really hard or they perceive as noxious. I feel like those kinds of things are really important to focus on.
Meg: I love that. And, you know, it is such a barrier here in the United States, that we can’t technically bill for those sorts of goals as far as I know, or for just working with a caregiver. That we have to be also working with the child, or the child has to be present. But I do think for folks who are listening who are working in an insurance billing model that that’s still helpful, because we can say, “Here are the goals that we’re going to put in the eval, and I hear your concern. And let me just tell you that these are the ways we’re going to work towards that concern, even if these aren’t the goals that I am writing exclusively or at all in this evaluation. That’s also what we’re going to be working on.”
So, I think that we don’t have to be limited by what we put in our treatment plan for insurance, because we’re not spending the whole hour working directly on those goals anyway, we’re working on relationships, and all of these foundational pieces, and connecting parents to resources. And that’s perfectly expected. I think your example gives us a framework for what can we say to a parent who says, “Yeah, but what about this.”
Elizabeth: Yeah, I agree. It’s really great way to put it.
Meg: All right, so, we have talked about so many different really important shifts that we can make in our work today thinking about trauma, especially for our autistic clients. But of everything we’ve talked about today, if there was just one thing you would want OTs to start doing or to do differently, what would that one thing be?
Elizabeth: Yeah, so if I could offer one helpful tip for OTs to get started with this, I just think it’s so important to slow down when you’re entering a treatment situation, or when you’re meeting a family, or any new client for the first time. Try to give yourself some space to really slow down and remember that your observation skills are really important. Your clinical observations are considered occupational therapy and are going to inform everything else you do with that client. So, not being too quick to dive into the clinical intervention or the assessment tool that you’re going to use, but really give yourself time to observe and notice what’s going on before you do anything.
Meg: This is such good advice, Elizabeth, for so many reasons, both for connecting with our clients and not jumping in too quickly, especially for folks who have had trauma and who we need to learn from first. And also because I’ve noticed that when I don’t know what to do with a child, it’s because I haven’t watched them yet. And when I’ve had students or others who I consult with who say, “I have this goal and I don’t know how to help the kid,” and you say, “Well, what are they doing now if you just watch them with materials?” and they say, “I don’t know I haven’t done that yet.”
And it’s so hard to understand what kind of supports a child needs, how they learn, what they can already do, and what makes sense to them, if we haven’t stopped and watched them. So, I think that’s really great advice that we all need to hear and be reminded of over and over again. So tell me, Elizabeth, where can we find you online?
Elizabeth: Sure. So, my independent practice is Heart of Gold Pittsburgh Therapy Project. I have a Facebook page, and you can find me on Instagram, @heartofgoldpgh is the Instagram handle. I update the stories quite a bit, so there’s different information in there you can see — that stuff about OT, but also pictures of my dog. [Laughs] Occupational therapy related to my dog. And then my website is heartofgoldpgh.com, and you’re welcome to contact me there if you have any questions.
Meg: Awesome, I will link to that all in the show notes as well at learnplaythrive.com/podcast. Thank you so much, Elizabeth. It was such a pleasure talking to you.
Elizabeth: Thanks. It was great to be here too, Meg.
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Thanks for listening to the Two Sides of the Spectrum podcast. Visit learnplaythrive.com/podcast for show notes, a transcript of the episode, and more. And if you learned something today, please share the episode with a friend or post it on your social media pages. Join me next time, where we will keep diving deep into autism.
