Episode 89
Interview between Speaker 1 (Meg) and Speaker 2 (Iris Warchall)
Episode 89: More Than Motor Milestones: Affirming Physical Therapy and Cross-Disciplinary Collaboration
[Introductory note]
Hey, it’s Meg. We’re doing something new and we need your input. We’re doing a call-in episode for our 100th episode, which will come out in August. And we want to hear how the work at Learn Play Thrive or this podcast has impacted your practice. So, call us, leave us a voicemail. It could be anywhere from 10 seconds of up to 10 minutes. Make sure it’s deidentified so your client or your clients’ family wouldn’t recognize themselves in the story. But tell us in whatever amount of detail you want to share how what you’re learning has impacted your work. You can find the link to record at bit.ly/lptimpact. That’s bit.ly/lptimpact. Please call us. We can’t wait to hear your story
[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 our professional therapy practices. I’m Meg Ferrell, formerly Meg Proctor, from learnplaythrive.com broadcasting to you today from unceded Tsalagi territory.
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’ because this is the preference of most Autistic adults. Being Autistic is a part of their identity that they don’t need to be separated from. Join us in embracing the word ‘Autistic’ to help reduce the stigma.
Welcome to Episode 89 with Iris Warchall. Y’all, since I started Learn Play Thrive, physical therapists have been showing up and asking how to apply neurodiversity-affirming principles to their work with Autistic people. I don’t have the answers, but I’m certainly sitting with them in the questions. And this isn’t just a conversation for PTs. It’s a conversation for all of us who support Autistic people so that we can know how to make referrals to affirming providers and collaborate with our PT colleagues in a way that is most supportive for our Autistic clients. Today’s guest who I’m very excited about, Iris Warchall, is an Autistic physical therapist who’s really doing the work to examine what affirming practices for PTs can look like. Iris is an Autistic self-advocate, parent to an Autistic child, and a physical therapist specializing in supporting adults with a variety of health conditions that are more prevalent among Autistic people. This includes hypermobility spectrum conditions, pelvic health concerns, chronic pain, dizziness and vestibular dysfunction, as well as movement disorders.
In addition to their clinical practice, Iris provides training for physical therapists and other professionals on implementing neurodiversity-affirming practices when supporting Autistic adults. Iris is passionate about doing their part two bring insights from the Autistic community and Autistic-led research to the physical therapy and broader healthcare community in order to improve the standard of care for Autistic people across the lifespan. In this conversation, I ask Iris the burning questions I’ve gotten from y’all, the community, including whether or not motor milestones should guide pediatric PT practice, how to balance a child’s right to physical autonomy with practices of providing physical prompting and assistance, how to find an affirming provider to refer a child or an adult who might need physical therapy to, and so much more. This is truly a conversation for everyone. Here’s the interview with Iris Warchall.
Hi, Iris. Welcome to the podcast.
Iris:
Hi, Meg. Thank you so much for having me for this conversation. It’s really an honor to be here.
Meg:
Yeah, I’m really glad to connect with you. I know we’ll get into it later in the conversation, but the way I describe it is physical therapists are literally knocking down our door asking for strategies and resources and support in applying neurodiversity-affirming principles to their work. So, I’m really excited to dive into that with you. But first, I want to start with you. Can you tell us your story and how you came to do the work that you do?
Iris:
Yeah, absolutely. I’m a physical therapist and I work in the outpatient setting with adult patients who are managing musculoskeletal conditions, chronic pain, and pelvic health concerns. I work with a lot of people with hypermobility spectrum conditions. And, of course, that makes sense, right, since hypermobile folks are more likely to experience pain and pelvic health issues. And I’ve also enjoyed and always had an interest in supporting patients with movement disorders like Parkinson’s, though that’s a smaller percentage of my practice. Like so many people, including several of the folks you’ve interviewed on this podcast over time, I’m an Autistic person who did not identify that I was Autistic until I had a child who received an autism diagnosis. So, throughout my education, and when I set out at the beginning of my PT career, I didn’t yet have the words to describe my disability, or my needs. And I had been under a huge amount of stress, because I didn’t know how important it was for me to arrange my life in a way that would actually meet my needs. And all of this was really negatively impacting my health, my physical health, you know. I was pushing through functioning in sensory environments that were inaccessible to me. I was pushing through doing too much without giving myself time to process or transition between things. And my system was chronically on high alert, which was affecting my sleep. It was affecting my digestion. It was contributing to migraines and muscle tension and other various health issues. And, of course, this is pretty much the same story that you’ll hear from so many people who are late-identified Autistic adults, that prior to accessing information that gives understanding around our neurotype and our needs, that we’re in and out of, or maybe constantly in burnout for years, right. And our physical health is affected. So, that was playing out for me, just like it plays out for a lot of other people in the world.
Anyways, eventually I became a parent. And eventually, again, I learned that my child was Autistic. And there were a lot of things that were suddenly being suggested to my family, behavioral interventions, that just didn’t make sense to me because they were exaggerations of doing the things that we were already seeing did not work at all to help my kid. So, that got me reading about ABA and Autistic perspectives on ABA, and Autistic experiences in general. And it was like, oh, yes, and just everything the Autistic community was sharing about what needed to change about the ways that we were supporting Autistic kids made complete sense to me based on my parenting experiences. And I was also like, hey, these are my life experiences. I am Autistic. And I can actually implement accommodations for myself so that I’m not under so much unnecessary stress. And my whole family benefited from the insights that people in the Autistic self-advocacy community were sharing, that my kid benefited so much, I benefited so much, you know. I was finally able to start figuring out what I needed in order to start feeling less constantly overstimulated and wiped out.
And another part of what was happening for me around that time was that a lot of what I was seeing with many of my patients started to make a lot more sense. Essentially, I noticed that I would encounter patients who in adulthood presented with their postures and movements in a way that made me wonder if they may have had some of the motor developmental differences that my child had or that I was recognizing that I had, which just made me really curious when working with my patients to consider the diversity of ways in which the human population can learn and develop movement patterns. As PTs, if we work with adults, I think we make these assumptions that neurodevelopmental motor differences are somehow rare and don’t affect how people move as adults. But given what we know about the prevalence of conditions with motor developmental differences, like autism, we can’t really be making that assumption. And I noticed that a lot of the patients I worked with who had experienced difficulty accessing the care that they needed were running into some of the same barriers to accessing care that I experienced myself as a patient. And I saw this theme of many of the people that I worked with experiencing many of the same neurodivergent stressors that I did, and being in a similar position to me where they didn’t have many avenues to get their needs met or understood.
And so, all this, you know, got me really interested in the question of how many people, adults, who are walking in the door to physical therapy clinics might be on identified Autistic or otherwise neurodivergent like me and benefit from having their needs met or met like I did? And just having this full circle. Around this time, there was also just starting to be literature published about the overlap between hypermobility and neurodivergence. I remember reading a 2020 paper by a Casanova et al about the similarities and traits and experiences experienced by Autistic people and people with hypermobile Ehlers Danlos Syndrome. And I was already working with a lot of patients with hypermobility spectrum conditions. So, things kind of came full circle for me, making me realize that the convergence of these topics, — neurodivergence, hypermobility — this was an area that the physical therapy community needed to be talking about more. And I realized I could help bring the perspectives of the Autistic self-advocacy community and Autistic-led research to these conversations. So, that’s where I am. And that’s why I’m doing what I do.
Meg:
Thank you so much for sharing that story. I love your phrasing of the diversity of ways that people develop their motor patterns, as opposed to this pathologizing of any difference in the way people develop motorically. And also, acknowledging that it presents barriers. It’s remarkable how little we’re still talking about the co-occurring physical health conditions that so often come up for Autistic people. It’s really not often part of the conversation.
Iris:
That’s right, I think not yet. And also, yes, I’m just so interested in these ideas of, you know, that we have such diversity among the human population in our motor development. And that makes us need to reflect, I think, as PTs, on is normal movement always the goal just for the sake of, you know, trying to fit movement to this statistical norm or this, you know, sometimes not even statistical but really culturally dependent norm, you know. Thinking about the way that people move in the world is very dependent on where you are in the world, actually.
Meg:
Oh, thank you for bringing in that cultural lens, too. That’s really important. I do get asked this by PTs a lot, because we’re critiquing, especially for OTs and SLPs, using developmental milestones to set our goals. And I was, I have PTs emailing me and saying, “Should PTs be using developmental milestones?” And I’m like, I don’t know. It sounds like you’ve thought a little bit about this. Can we talk about that a little bit?
Iris:
For sure. I’ve thought a lot about this. And I think, first, I’d like to say it’s a nuanced question. Because movement matters. The way that we move matters in a lot of ways. And thinking about a child’s motor development, and what that might mean for them in the long run in terms of their long-term function and doing the things that they want to need to do, there are a lot of grey areas, I think. Because just for example, one question that was brought to me by a few different parents in my area that I was talking with was this question around, “Well, when do we do something if my child is a toe walker? And is this something that we need to be concerned about? I’m not sure,” and so, you know, being myself, I, you know, I said, “Well, I have my own thoughts on this. But let me go and look at what the research actually says,” you know, whatever evidence do we have? And what perspectives have been shared by Autistic people who are toe walkers? And the answer is really, it depends.
Because there are some Autistic people who either as children or continue into adulthood tend to walk on their toes who might have, for example, some of these other co-occurring conditions, like hypermobility spectrum conditions where they have experienced foot and ankle issues, and they feel that their toe walking pattern contributes to that, right. So, we have to acknowledge that. On the other hand, there are a whole lot of Autistic people who walk on their toes who never wind up noticing any problems associated with it. And so, we have to question is, you know, is it that when we’re seeing a child who is continuing to walk on their toes for longer than the average developmental milestone, you know, are we, as PTs, suggesting that we change this just for the sake of changing it just because it looks atypical? Is it because maybe there’s some cultural stigma attached to walking? And, you know, is that a part of our decision making that’s kind of implicit that we’re not really talking about? But also, at the same time, acknowledging that each individual person is gonna have their unique set of factors, whether that’s co-occurring conditions, or maybe family history of certain things coming up, that might make us want to say, “Hey, okay, let’s look at PT/OT collaboration to figure out what might be helpful for this kid.”
Meg:
Yeah, that’s a really familiar framework. I appreciate you applying that to looking at PT-specific questions of starting with ‘Why’. Okay, so why, why do I want to change this? And this is an area where I, trained as an OT, do not have the clinical skills to assess that, if it’s going to impact the child’s bone and muscular systems. I don’t know. And so, we do need folks who have the clinical expertise to be able to say, physically, this is okay. And then, the overlay of having sort of looked towards their own ableism. And the process of saying, “I don’t know that we need to change this just because it’s different.” So, I appreciate you applying that familiar framework. One thing that you have said in your work is that taking a neurodiversity-affirming approach can help all patients, or all of the clients that you’re seeing as a PT. Can we talk a little bit more about what that looks like and why that’s true?
Iris:
Absolutely. I’d love to speak to that in general terms first, and then I’ll give a couple examples. If we zoom out and we think about what neurodiversity-affirming practice really means, what it means is that as clinicians, we are working in a way such that we recognize that there is a huge amount of diversity and neurocognitive function among the human population. That because of that, there is no one true correct way for people to think, feel, communicate, experience, or move through the world. And if we as clinicians make assumptions about and act in a way that we are trying to fit people into this arbitrary idea of what is, quote unquote, ‘correct’ or ‘normal’, then we are at best, I think, missing out on supporting our patients in embracing a lot of creative strategies to manage their health and well-being; and at worst, we are causing harm to one degree or another, right. So, neurodiversity-affirming practice is of course beneficial to everyone because it’s all about this central idea of helping people discover what is the most truly helpful to them as individuals, as opposed to making assumptions about what will be helpful to people based on whatever the dominant cultural ideals happen to be in the places where we’re practicing as professionals.
The way I like to phrase this is we have to come back to this question of what strategies are going to be the most helpful for this individual person to be able to do what they want and need to do. That’s what it all comes down to in the end. Now, part of this also is that we have to acknowledge that minority stress is a real thing that affects people’s health, that ableism is a real stressor that affects people and is pervasive in our society, and that this stress from existing in an ableist society is a form of minority stress that neurodivergent or other disabled people experience. So, neurodiversity-affirming practice needs to also include recognizing that neurodivergent people experience health disparities because of the stress they experience due to stigmatization, discrimination, and exclusion. And doing what we can do to help change neurodivergent people’s environments so that they’re exposed to less of this harm. But like TL Lewis points out in TL’s working definition of ableism, you don’t have to be disabled to experience ableism or be harmed by ableism. What follows from that is that you don’t need to be disabled to benefit from anti-ableist practices. You don’t need to be neurodivergent to benefit from your clinician taking a neurodiversity-affirming approach.
And I know Mel Houser spoke to this in their podcast episode with you how thinking of neurodiversity-affirming practices as being universal design, that is working to set up everything you do as a professional so that you’re prepared with a wide array of options for how to modify every piece of your patients’ experience to be able to meet the needs of as many people as possible, as well as possible. So, for example, setting up our practices so that we’re aware of the range of things that can work best for any given person in terms of how it work in communication with them, in terms of the sensory environment, in arranging things that work for the person’s executive functioning style, making the physical environment accessible. Especially for PTs, selecting activities that are accessible to a person’s motor function. This is all part of neurodiversity affirming-practice. We need to think about the fact that all of these potential different ways people might have of interacting with the world based on their individual brain wiring are going to result in different people responding best to different treatment strategies or options.
So, just for one really simple and basic example in the physical therapy community, sometimes clinicians might be looking at how to support a patient through the lens of, well, I’ve got training in a particular type of exercise instruction or manual therapy technique that uses a lot of tactile cueing and input to help with training movement or reducing pain. And based on my training, and my experience, as a clinician, I think this message is really wonderful. And I try it with everyone. And maybe that particular sensory input, which that particular technique uses works for a lot of people. But then, what if your patient is very tactile sensitive, and actually can’t move well when you’re giving them those tactile cues, because it’s distracting to them? Or the tactile input from the manual therapy that’s supposed to be regulating is actually a little annoying feeling for that person. But the patient has heard that this style of treatment is just the bee’s knees and they want to continue with it, even though it isn’t really a good fit for their sensory profile. Those are examples of situations where if we as clinicians think about the fact that we need to be thinking through the lens of universal design, of neurodiversity-affirming practice, we could match our support strategies much better to the individual people that we’re working with. And we can see how this can be beneficial to everyone, not just neurodivergents.
Meg:
Thank you so much for that framework and those examples. I think one of the barriers for PTs has to be that there are not a lot of trainings, there are very few trainings focused on neurodiversity for physical therapists. And you offer some on your website; we’ll link to them in the show notes for sure. And I hear from physical therapists all the time who say, “Hey, these are our values, too.” It makes me so hopeful for your profession that PTs are like, “Hey, I know you’re not talking to us. But we are listening because we care about our Autistic clients. And there is nobody teaching us how to do the work that we need to do to be better providers for our Autistic clients.” And I imagine that one of the barriers has to be training. What other barriers do you find that there are to PTs adopting a more neurodiversity-affirming approach? And then, what are some of the facilitators?
Iris:
I agree with you, a hundred percent, that I, too, have been privileged to talk with so many other physical therapists who are really interested in learning how to take neurodiversity-affirming approaches to supporting patients generally, and PTs who are really interested in applying that also specifically to the Autistic population. But that also our profession has a ways to go in terms of there actually being enough training out there available for people. And additionally, I think one of the biggest barriers, honestly, is that there’s not yet a really good widespread understanding out there in the PT world of what neurodiversity-affirming practice really means. And that, like we were just saying, it’s applicable to and beneficial for everyone. I think if PTs come across the term ‘neurodiversity-affirming’, there’s an assumption that it’s something that relates only to working with Autistic kids.
And I even then, honestly, I see that among the broader population of those PTs who do work with Autistic kids, there’s not yet widespread understanding about how, or even whether neurodiversity-affirming practices are applicable to the PT world. I know there’s so much work to be done in all of our fields as allied health professionals towards adopting neurodiversity-affirming practice. But I think the PT profession does have some catching up to do to get to the amount of conversation around neurodiversity-affirming practice that is going on in, for example, the occupational and speech therapy or psychotherapy professions. On the other hand, I think physical therapists are so well equipped to understand and embrace neurodiversity-affirming practice, because we’re trained to take a biopsychosocial approach to supporting folks. And I think as PTs, we really do want to see and consider and honor our patients as whole people. We just don’t yet have the conversations around what that really means in terms of all the neurocognitive diversity among the people that we support. What we need to do to expand our mindsets to meet the needs of neurominorities, and what we need to be aware of in terms of practices that might inadvertently cause harm to some patients. Because those patients may have been developed through a lens where our profession has made assumptions that neuronormative function should be the goal for everyone.
Meg:
Yeah, that makes a lot of sense. And there’s definitely some opportunity there for someone, some groups of people to bring together these conversations and the resources and start applying it and making that more widely available. I did a training for Seattle Public Schools, and somebody approached me later and said that they had gathered a group of PTs and they were reading everything they could about neurodiversity-affirming practices, and just trying to figure it out together, how to apply it to their work. It’s hard work and it’s really important. One PT specific question that I get a lot by email is about touching your clients’ bodies. I mean, I could talk in my sleep about, quote unquote, ‘hand-over-hand assistance’ for occupational therapists and how writing a goal doesn’t give us the right to move a child’s body without their consent to how harmful that can be. And I’ve gotten questions with some level of nuance from physical therapists about, “Hey, it is important for me to support this young child in learning how to crawl, walk, like really important for their development and for their life. And I want to do this in a way that respects their autonomy. What advice do you have for me?” And again, I sort of stutter and don’t know the answer. Can you speak to that a little bit?
Iris:
Yeah, absolutely. I agree that this is another example of a question where there usually is going to be a lot of nuance to the answer. And while I’m not a pediatric PT, I definitely have reflected on it a lot as it’s related to my own child’s experience with physical therapy, and my experience navigating how best to support her. And I think to your podcast listeners, my thoughts on this are going to be familiar and that it all comes down to honoring our patient’s communication, and not just verbal communication. But at the same time, I feel like these questions that you’re mentioning come up in what I hear pediatric PTs discussing, and there’s clearly a need for us to talk about this and explore it. So, first and foremost, for any person we’re working with in PT, whether that’s a child or an adult or even an infant, we need to honor bodily autonomy. Absolutely. We need to be in constant communication around consent and honor what our patients are communicating to us. And communication can be verbal, it can be written, it can be any modality of communication. It can be body language, right. And I’m a fan — my brain works in a way where I like to think about going through things sequentially. So, let’s start this by thinking about infants, because even infants who are at a developmental stage where they need our physical support, to, you know, move and be carried from Point A to Point B, they will communicate to you in no uncertain terms if they do not appreciate how you’re touching or holding them, right. So, infants advocate for their bodily autonomy, and we do our best or, well, you know, we should be doing our best if we want to honor bodily autonomy, to sleuth out what infants are trying to communicate to us, and help them to get what they need in order to feel regulated again.
Now, let’s think about children as they’re getting bigger. And maybe we’re PTs trying to support them in developing their movement skills. Some of the reasons that we might be touching our patients as PTs as part of this can be to give cueing in one way or another, tactile cueing or proprioceptive input, that can help to facilitate a movement pattern that that person, that child, that adult — doesn’t matter the age — is working on practicing. We also might be using our hands to give some physical support so that an area, for example, where there might be weakness or coordination challenges that make it hard for a patient to maintain a certain position, you know, we’re acting in that moment kind of like their brace, or their assistive device, right, by using our body as support. So, I’m going to say here that my kiddo was just the best teacher, actually, on this topic for me. And also, I think, for some of the clinicians that she and I have worked with, because her natural inclination is to just so strongly and confidently decline to do something when it does not feel good for her. And I have just always admired that quality so much in her and I want to nurture it and protect it. Anyways, at various points when we’ve done PT or OT, a clinician might have placed their hands on her to give some support or guide her movement. And she will very directly indicate, whether that’s by words or her body language or otherwise, whether it’s okay with her. Some things are okay on some days, maybe not on other days, right, depending on how her body is feeling, how she’s feeling. Some things just are not comfortable. And so, with any of these different ways of communication, then she would decline.
And I think as a physical therapist, at least, I think that sometimes we can find ourselves really trying to encourage people to push through trying an activity, even if it feels uncomfortable for them. And we just really need to be aware of what our patients are communicating to us. And at the first signs of someone saying ‘No’, in whatever way, then to pause. Let’s stop that, right? That maybe that means we just need to have more of a conversation and communication with our patient around what we’re doing to come back to it at a later time maybe, to figure out what this person does feel comfortable with, what they don’t feel comfortable with. Sometimes it might mean just no, we’re not going to use that particular strategy. And to my mind, that always is a hundred percent okay, not just because we need to be operating through a trauma-informed lens and respecting our patient’s bodily autonomy, but also because there’s never one right way to practice something, right. There are always other options for different activities, different strategies, different supports, different avenues that we can be using in order to help someone to meet their goals. So, when we see a patient feeling a little unsure or uncomfortable about something, let’s get curious about it, right. And let’s kind of dive in and put on our detective hats. And maybe that means collaborating with the OT or SLP to figure out in terms of that a patient’s sensory profile or in terms of their communication then what is actually going to work best, right?
Meg:
Yeah, I love this. I love this statement that there are lots of different ways to work on something. And that the way you know, the way that you’re used to doing if it’s making the child uncomfortable, that’s not a dead end. And there’s, and I heard you say there’s other ways to pace it, too. There’s other approaches, there other activities, and there’s other pacing options. We can pause; we can move more slowly. I was thinking about my own six-year-old who is — he does speak typically. But sometimes he uses a thumbs up, thumbs sideways, thumbs down with me, especially if he’s involved in an activity with another person. He will turn towards me and give me a sideways thumb, ‘I’m okay right now, but it could tip and I’m not sure that I want to keep going’. And when it tips to thumbs down, we pause, period. It’s so much easier for me to see with my own child, where I was never taught that his deepest needs aren’t the most important thing. And as providers, we were taught, get them to meet the goal, do the developmental milestone, and we can lose sight of what is most important. I really latched on to the words that you said, “We need to figure out what they need to feel regulated again.” Because PTs aren’t different here than other fields, that you’re teaching something. And people don’t learn when they’re in fight-or-flight. So, being able to say how can we get back to a state of regulation is foundational to doing our jobs well, so our clients can feel safe enough to learn, right.
Iris:
Yes, absolutely. Thank you for coming back to that. Because I think that, just like you said, you know, sometimes as clinicians in any field we can get so laser focused on the goals or the particular framework that we’re trying to use to achieve those goals that we might need to remind ourselves to come back to that idea, right.
Meg:
Yeah, let’s stay here for a moment on the social impact. One thing that that you talk about is the social impact of Autistic motor development differences. And we’re talking here about the emotional impact of how we approach it. We’ve talked about ableism. I want to shift a little bit to how Autistic motor development has a real impact on a child’s social development and the way they’re helping professionals supports this, impacts that as well. Can you discuss this a little bit?
Iris:
Sure. I think there are a lot of different pieces to that topic. And so, I’ll throw some ideas out there. And I would love to hear if there are other directions that you’re thinking about this through that we should explore more. Of course, in our neuronormative childhood social environments, right, then it definitely can be that kids with motor developmental differences who are gaining skills at a different rate or gaining different skills from their peers can find themselves excluded, right? In sports, on the playground, during physical activity, physical education classes. This is a real and major stressor that a lot of Autistic people deal with as they’re growing up. I think that, you know, we — I’m not going to say anything like throw out any specific numbers on this, because we don’t have research specifically to give that, but there have been some qualitative studies done around the experiences that Autistic dyspraxic people have around all this. And it’s a challenge. I think that’s just one other example amongst so many other examples of why having neurodiversity and disability education for children be part of just what our society includes in standard school curricula is so incredibly important. And, you know, I’ve been doing so much work to try to advocate for this in my community. I think there are so many other different ways in which Autistic movement differences do wind up affecting our social experience.
And I don’t know if this is the direction that you’re thinking of in that question but something that as a clinician, I feel is so important for us as healthcare professionals to recognize, is that Autistic motor developmental differences influence things like people’s posture, and body language, and facial expressions. And even because oral speech, of course, has a large motor component to it, the things like the rhythm or the tone of our voice. And when Autistic people are in communication with their healthcare providers, then healthcare providers need to be aware of the fact that, you know, there is this diversity of all of these different traits relating to communication among their patient populations, and that these differences can make it so that we have to really take a person’s communication at their word and not be reading into their body language in a way that might not actually be fair to them, right. That’s, something that really comes to my mind when I’m thinking about the social impact of motor developmental differences, because, again, just kind of zooming out, thinking about some of these co-occurring conditions, you know, a lot of people with hypermobility spectrum conditions are managing symptoms that might be a little unusual. And they can experience challenges in communicating with their healthcare providers to get the right workup and/or support for the symptoms that might be less common. That’s already a barrier. But then, when you wind up adding on top of that, for those people who are also neurodivergent and have their communication look a little different, then that can add up and be another additional barrier if clinicians are not thinking about the fact that we need to be mindful of the assumptions that we make about people based on what they look like while they’re communicating.
Meg:
I really appreciate that zoomed out approach. I think it’s really dangerous for us to get too siloed into thinking that physical therapy exists completely separate from somebody’s health check-ins with their physician, and that occupational therapy isn’t related to speech, and all of these things are siloed in a way that is practical, because we have to focus somewhere. And we have to be able to think more broadly than that. I want to just send people back to Episode 57. You mentioned the conversation with Dr. Mel Hauser. We don’t have time in this conversation today to go deeply into those related health issues that often occur for Autistic people. But we all need to know about it, just as like you said, the way somebody’s speech and communication differences are going to impact how they access care in every domain. I’m gonna ask you, for those of us who are potentially referring folks to PT, that could be kids or adults, what should we be looking for in seeing if we’re finding, I mean, at best, an explicitly neurodiversity-affirming physical therapist, but at minimum, someone whose approach is hopefully going to have a positive impact on our Autistic clients?
Iris:
So, absolutely. I’m happy to speak to that. And I’ll say, first off, there are a whole lot of different things that any of us as Autistic people, or as family members of Autistic people might want to ask a physical therapist to understand if that PT is going to be a good fit. I have written an article that was shared on ‘Thinking Person’s Guide to Autism’ on finding the right physical therapist for Autistic children and adults. That goes into probably more detail than I’ll be able to share here. But I would love to talk about some of the high points. I think, first, it’s helpful to be thinking about whether you feel like in your particular situation, because this is going to depend based on if this is a question you’re asking for your child, if it’s something for yourself, you may or may not decide to ask if the physical therapist has experience working with Autistic patients. If the PT does not have experience, then are they open to learning from you if you share some resources with them ahead of time? And so, for example, that might include the AASPIRE Healthcare Toolkit, or it might include the communication guidelines, the ‘More Than Words’ that was published last year. If you’re seeking PT for your child, then can the PT directly collaborate with occupational therapy or speech therapy if needed? How, like we were talking about earlier in this conversation, how does the PT handle situations where a child refuses an activity because it’s so important to seek out pediatric PTs who encourage a child’s choice and autonomy and who are not going to be using compliance-based strategies like withholding preferred items or, you know, incentivizing, pushing through something that doesn’t feel right, in order to get children to participate in PT. You may also want to, of course, be asking your physical therapist, if you’re seeking PT for a hypermobility related issue, then is the PT experienced in working with people with hypermobility spectrum conditions?
But then, there are all of these other questions around the individual person’s needs, their access needs, that you, I think, should consider asking about or maybe even if it’s possible to just drop by a clinic beforehand in order to observe the space and understand, you know. You have to be thinking about where will you be working with a physical therapist? Are you going to be working with them in your home? Is it going to be in a clinic? Is it going to be somewhere else? Is it going to be via telehealth, and does that work for you or your child? What is the sensory environment in the clinic like? Is it really busy? Are there a lot of people in an open gym space? Is there music in the background? Is there fluorescent lighting? You have to think about all of those things. Are those important for you to ask, right? A lot of us as Autistic people find that it’s so helpful to be able to have consistency and predictability in our therapy experiences. And so, asking, okay, in this clinical setting, will you be able to always follow up with the same physical therapist? Or might it be a different person that you’re working with on different days? Are you always going to be working directly with a physical therapist? Or are there physical therapy aides or other assistants who might be a part of the team that is helping with PT care? And is that something that you feel comfortable with? You know, are you going to be able to work with your physical therapist to figure out if an activity doesn’t work for you, for whatever reason, like we talked about, if it just doesn’t feel like a good sensory fit or if the, for example, physical therapist might suggest an exercise that winds up being a little bit too challenging for your individual ways of moving and what feels natural for you and your body, then is that PT going to be comfortable being in communication with you on how can we get creative and try to modify or take a different approach, right. So, these are all some things that are going to be important to one degree or another for each of us. And we each have to make our own decisions as to what we want to really prioritize and reflecting on, and then asking about, prior to starting physical therapy.
Meg:
That is incredibly helpful. Appreciate that guidance. I will link to your article in the show notes as well as the AASPIRE Healthcare Toolkit. That’s AASPIRE with two A’s at the beginning of the word. Before we move towards wrapping up, is there anything in the conversation you want to bring us back to or any big important points that we missed?
Iris:
I feel like we covered so many topics here that I just feel so grateful to have had the chance to chat through with you. Because all of these are so relevant for a lot of people. So, I first just want to say thank you, Meg, so much. I really enjoyed this conversation. I think, if there’s one thing that I would like to just kind of circle back to that I think we’ve alluded to here and there throughout the conversation is that in physical therapy, so much of what we do also is going to be relating to an individual person’s sensory profile, their communication, and what works best for them in terms of communication strategies, and their executive functioning, which we didn’t even start to chat about. But because of that, I think it’s so important for us in the PT world to be thinking with our patients of all age, not just kids, how can we be collaborating, co-treating with the other disciplines, with PT, with speech therapy, because, you know, I just see one example, and there are going to be so many other examples, in the populations that I work with, there are so many people who are going to be able to better benefit from physical therapy if they’re also able to access occupational therapy in conjunction with that, right. So, that was one point that I just wanted to circle back to, because I think that’s another conversation that we need to keep having in the PT world.
Meg:
It is. And it’s a two-way street, right. Our clients are going to better access their mental healthcare, their speech language pathology, their occupational therapy, some of them with access to a physical therapist to support them, as well. So, thank you for that. Iris, tell us a little bit more about the work that you do and where we can find you online.
Iris:
Yeah, absolutely. So, I have a website with information about the work that I’m doing, which includes doing some trainings for physical therapists around supporting Autistic adults, which is my name dot com, iriswarshall.com. And I’m also fairly active posting and interacting with folks on Instagram where my handle is @AutisticPhysicalTherapist. And I am so eager to connect with others in the PT community and in the healthcare community more broadly, to continue these conversations around neurodiversity-affirming care, supporting neurodivergent patients. And so, I always very much welcome anyone reaching out to me just to connect, to chat, let’s keep these conversations going.
Meg:
I love that. Thank you so much for sharing that invitation. I will include everything in the show notes as always. And I’ve been on your website. There’s a lot of wonderful resources there, and I follow your Instagram, and it’s a great place where we all need to be. So, thank you for your time today and for the work that you do.
Iris:
Thank you, Meg, so much, likewise, for having me for this conversation, for your time, and for all the work that you do.
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