Iris Warchall PT, DPT is “an Autistic person, a parent to an Autistic child, and a physical therapist who specializes in helping adult patients with chronic pain, pelvic health conditions, neurologic conditions, and hypermobility spectrum conditions including Ehlers-Danlos syndromes.” We spoke with Iris about neurodiversity-informed support, the overlap between physical and occupational therapies, and how being an autistic PT can help identify patient needs that other practitioners might ignore or dismiss, like sensory or executive functioning issues—including clues of undiagnosed autism and other forms of neurodivergence.
Thinking Person’s Guide to Autism (TPGA): This is something many people get confused about so I hope it isn’t too annoying but: What is the difference between Physical Therapy (PT) and Occupational Therapy (OT)?
Iris Warchall: Physical therapists help people improve their function and/or well-being relating to movement. That can include managing physical injuries, neurologic conditions affecting movement, movement challenges relating to surgery or illness or other health conditions, ergonomic issues, and bowel and bladder and reproductive health conditions (sometimes people are surprised movement and muscle coordination relate to these functions, but they do!).
Occupational therapists help people improve their function and/or well-being relating to occupational activities, meaning any activities that a person might need to do in their life. Occupational therapists can help people with identifying and implementing supports for physical challenges, cognitive and emotional function, sensory function and processing, and a variety of life skills.
Occupational therapy and physical therapy by definition have a lot of overlap in terms of scope of practice, and PT’s and OT’s often collaborate with each other. OT’s generally have more training and knowledge about how to support sensory and executive functioning needs, and PT’s generally have more training and knowledge about how to support issues relating to movement. But both PT’s and OT’s can provide support in all of the above domains.
If you as an autistic adult are managing chronic pain, injuries, dysautonomia, pelvic health issues, or other neurologic issues, you might wind up finding benefit from PT, OT, or both.
Each individual PT or OT has their own specialized area of practice and specific skill set. If you need support for a particular issue, it’s best to seek out a PT or OT who specializes in providing that particular support.
TPGA: Autistic people tend to thrive with autistic-informed supports, which you supply as an autistic therapist. Do you have a sense of how your approach varies from that of a non-autistic therapist?
Warchall: I’m coming at my work through the lens of the neurodiversity paradigm and social model of disability, as compared to the medical model of disability, which is the lens through which most physical therapy interventions have been developed. The neurodiversity paradigm, and the social model of disability, focus on analyzing the fit of an individual with their environment, and figuring out how to modify that individual’s environment and daily activities to help them function at their best.
So, I want to help my patients discover what strategies they as individuals can use in order to accomplish what they want and need to do, and I think I’m more likely to be open to supporting my patients in using “atypical” strategies. I’m less likely to suggest goals that are trying to fit a patient to a “reference norm.”
I tend to consider my patients’ executive functioning and sensory processing needs to a greater degree than most physical therapists. PT’s generally learn a bit about these topics as part of our entry level training, but not enough, and there’s a lack of education for PT’s about what accommodations or supports autistic adults might need, and how to recognize and accommodate those needs.
My communication style can be a better fit for some neurodivergent patients, and I’m tending to look out for whether I need to modify my communication style to fit that person’s processing style. Additionally, I’m able to empathize with neurodivergent patients who have had developmental differences in motor, sensory, or executive functioning.
Since I work with a lot of people with chronic pain or other conditions that are very affected by a person’s overall systemic stress level, I teach a lot about stress management, which most physical therapists wind up doing to one degree or another. But I do think I’m more aware of the fact that people can potentially have a broad range of sensory, communication, and executive functioning needs that are unknown and unmet.
I work with my patients to explore what they as individuals need in order to minimize stress and feel good. Do they need help reducing sensory overload? More sensory input of some kind? Would this person benefit from exploring these issues with an OT? Do they need executive functioning supports to minimize stress at work or at home? Does it seem like this person may be experiencing stress associated with masking neurodivergent traits, and would they benefit from a referral to a neurodiversity-affirming mental health professional to explore this?
TPGA: Do you treat non-autistic patients as well, and if so do you have to change your approach? What are some challenges for you when you work with non-autistic clients?
Warchall: I work with adults of all neurotypes. We know a large number of the autistic people who have currently reached adulthood are undiagnosed or misdiagnosed. It sometimes happens that I’ll have a patient with a formal autism diagnosis, but it’s likely that a reasonable percentage of the patients that I see are autistic and undiagnosed.
What percentage? Well, if we extrapolate from some of the recent literature on prevalence in females (which is much, much higher than historically clinicians have thought), it is likely that up to about 1 in 20 people in the world are autistic. I work with a lot of people who are dealing with chronic pain, hypermobility spectrum conditions, and pelvic health issues, which are all more common in autistic adults. So, if someone walks into the clinic that I practice in, that person is more likely to be autistic than that rough estimate of 1 in 20 for the general population. Autism is not uncommon.
Because of this, I approach all my patients in the same way: by assuming that I should be on the lookout for whether they need modifications to my default way of providing care in order to accommodate their individual executive functioning, sensory, motor developmental, or communication needs. Over time, I have found that a lot of the people I work with wind up benefitting from extra support or accommodations or referrals in one or more of those domains.
I’d also like to pause for a moment to point out that we’re talking about autism in this conversation, but other forms of neurodivergence, both developmental and acquired, are common as well and almost always benefit from accommodations of one kind or another. I’m constantly on the lookout for what people need in order to have the best outcomes from their work with me—and that includes providing referrals to other providers as needed.
The question of whether I change my approach when working with allistic patients is an interesting one. I think the main difference is that I am somewhat more likely to find myself masking my autistic traits when working with an allistic patient if I sense it will make that person more comfortable. Not all allistic people need this to be comfortable, but some do.
Of course, it’s impossible to completely mask my autistic traits, and there are often situations in which I won’t be able to give the best care when putting energy into masking, so over time I’ve learned to give simple explanations for my differences when working with people. There’s a huge lack of understanding in our society generally about what autism actually is, so instead of explaining that I am autistic, and getting into a long discussion about what autism is, I give explanations for the specific traits of mine that my patients might find unusual.
For example, one of my communication differences is that when explaining certain ideas, I will need several seconds more processing time for my ideas to be converted into verbal speech than most people do. It’s not an anxiety thing, it’s just a processing quirk. So, when this is happening for me, I tell my patients that sometimes my brain glitches and I need a few extra seconds to get my thoughts formulated into words, so they don’t wind up thinking I’m anxious or unsure about what I’m communicating.
I’m definitely curious how other autistic healthcare providers navigate the dynamic of working with allistic patients.
TPGA: You are both autistic and a parent of autistic child. Whose diagnosis came first, and how did that dynamic affect your own journey as a person and parent?
Warchall: This played out in a way that is not uncommon in neurodivergent households: My child received a autism diagnosis, and I almost immediately identified myself as autistic after doing some reading and encountering stories about experiences of late-diagnosed adults.
Prior to my child being identified as autistic, I had already over time accepted that I needed to do things differently than most people in order to function well. I had realized I needed to pace my activities, have a consistent routine, engage with my special interests, and manage my social relationships differently in order to avoid burnout. I had realized that I needed quiet transition time to recover after working, and I had found a position at a clinic where I could work one-on-one with my patients in a quiet room without harsh lighting.
It had taken a lot of trial and error, talk therapy, and self-discovery work to get to the point where I had even started to understand these things about myself. I consider myself immensely privileged to have had the ability to access the resources to begin to understand my needs, and yet with all the resources I had thus far been able to access I still had a lot of questions, uncertainties, and self-doubt about why I needed to arrange my life differently from most people.
Prior to understanding that I was autistic, I was confused and felt shame about not being able to do things in the same way as most people. I had come to think of myself as somewhat disabled, though I had no idea why this might be, and at that point was chalking it up to an anxiety disorder. When I finally realized I was autistic, and that the reason I seemed to be disabled was that, well, I was disabled, everything made sense, and that sense of shame disappeared. I was able to learn so much more from the autistic community about how to take care of myself than I ever had from other sources. My stress levels dropped dramatically once I finally began to understand the specifics of what I needed, and why.
My parenting experience also vastly improved upon understanding that both my child and I are autistic. What I’ve learned from the autistic community has helped me to much better understand and accommodate her needs, which are different from mine. I’ve learned how to balance her needs with my needs, and provide her with the strategies she needs to be a self-advocate. I feel incredibly lucky and privileged to be able to do this for my child. I really want to use my professional leverage as a healthcare provider to help change the fact that most parents of autistic children wind up getting unhelpful and sometimes actively harmful advice from healthcare providers who are operating through the lens of the pathology paradigm, because this currently makes life so much harder for kids and their entire families every single day.
TPGA: You support clients with common autistic co-occurring conditions like Ehlers-Danlos syndrome, which is not an easy diagnosis to get due to lack of medical expertise. Do your clients tend to come to you already diagnosed with EDS? Or is EDS something you occasionally have to help clients recognize and then get formally diagnosed?
Warchall: Autistic people are more likely than allistic people to have EDS, which refers to a collection of connective tissue disorders that commonly present with joint hypermobility with associated musculoskeletal issues and can also make a person more likely to experience aortic and other aneurysms, abnormal scarring, hernias, and pelvic organ prolapse.
It’s not uncommon for people with EDS to be undiagnosed and/or misdiagnosed. I definitely wind up seeing patients who have not yet been diagnosed but have many of the signs of EDS, and when I meet these folks I educate them about hypermobility spectrum conditions and refer to a physician knowledgeable with EDS for screening. Over the last few years, I’ve met more and more people who have already received an EDS diagnosis before I encounter them, which is great.
Recognition of EDS and other hypermobility spectrum conditions is so important. If someone has EDS, they need to see a knowledgeable physician to be screened for potentially serious health issues, and they need to have a knowledgeable physical therapist and/or occupational therapist who can help them navigate functional issues when they come up.
Healthcare providers need to know about the potential co-occurrence of autism and hEDS, because both have their own set of potential accommodation and support needs. In addition, the two conditions put together can set patients up for having serious health issues get dismissed. If you’re autistic, and your healthcare provider doesn’t recognize that and/or know what that really means, your provider is more likely to incorrectly interpret your body language and communication style as anxious, insincere, or confrontational. Couple that with symptoms that are less common, like the range of symptoms that folks with hEDS can experience, and you have a recipe for real and serious concerns being dismissed and not addressed by the provider.
This comes about because of lack of awareness among healthcare providers, not from providers having ill intent. We need to keep working on improving awareness, which includes including more training on these issues as part of the entry-level curricula for providers.
TPGA: Based on your experience working with autistic clients, what are some additional common physical conditions for autistic people that often get overlooked, and need more attention?
Warchall: Seventy-six percent of Autistic adults experience chronic pain. A recent study found 79% of Autistic adults reported urinary incontinence, and 33% reported fecal incontinence. Autistic people are more likely than allistic (non-autistic) people to live with dysautonomia, allergies, and autoimmune conditions for which they may require referral to another medical provider for management as they concurrently work with physical therapy. About 11% of autistic people have epilepsy. About half of autistic folks have gastrointestinal issues. One study looking more specifically at health conditions in autistic adults over the age of 65 found that autistic people are significantly more likely to have epilepsy, Parkinson’s disease, and gastrointestinal conditions.
It is important for healthcare providers to be aware that autistic people can be more likely than allistic folks to experience these health conditions, and learn how to communicate well with their autistic patients to ensure that their medical needs are being met.
TPGA: I’m guessing sensory issues can affect how you practice with individual clients. How do you change your approach with hypo-sensitive and also with hyper-sensitive clients?
Warchall: Understanding someone’s sensory needs is important to creating a physical therapy plan of care that will work well for them. There are so many different ways that someone might need their physical therapy approach customized to meet their sensory needs.
One person might benefit from my providing a lot of auditory cues while they do their exercises in order to get their body moving in a rhythm; another person might need me to stay quiet so that they can focus on their movement.
One person might need to see their body in the mirror while learning an exercise; another might learn best by closing their eyes to filter out visual input in order to learn the same exercise.
One person might benefit from a lot of proprioceptive and vestibular input by jumping and rolling and spinning to reduce muscle tension. Another person might need to keep their body completely still to relax their muscles.
One person might be tactile sensitive in a way that makes the experience of another person touching them unpleasant and stressful, so I’m going to help that person achieve their goals without touching them. On the other hand, another person might benefit from my giving them tactile cues so they can know where their body is in space.
There are infinite examples!
There’s another important benefit to a physical therapist considering someone’s sensory profile, which is relating to the advice we give for stress management.
When physical therapists are working with someone with chronic pain or pelvic health conditions, it can be important for them to help their patient find a way to reduce and mitigate stress, because the body’s stress responses can have a direct negative impact on pain as well as bowel and bladder issues.
Most physical therapists who work with these populations teach activities like diaphragmatic breathing or progressive muscle relaxation to help manage stress, and these strategies are often really important and helpful for people. Using strategies for stress reduction can directly improve someone’s function relating to movement, whether it’s being able to better coordinate their muscles for bladder control or being able to work at the computer without a headache.
We as physical therapists can do even better by understanding if part of someone’s stress situation is actually due to unmet sensory needs, because there are so many people out there who have unmet sensory needs that they have never received support in understanding. We can do basic sensory screening. We can educate people about what sensory needs are, why they’re important, and how to start thinking about discovering and meeting those needs. We can refer to occupational therapists for a more thorough assessment of those needs, and for further guidance.
TPGA: Autistic kids with excesses of energy and/or who have “behavioral” issues are often encouraged to pursue intense exercise as an outlet. Can you tell us your take on this? I’m guessing it’s complex.
Warchall: You’re right, this is complex, because first of all, “behavioral issues” are signs of unmet support needs. So, the first thing a parent or helping professional should be doing to help a kid is to figure out what domain those support needs are in, whether they’re sensory, executive functioning, communication, or something else, and then implement the needed supports.
There are many support needs a child could have that would have nothing whatsoever to do with exercise. However, exercise/movement can be an important support for many children (and adults). I’ll list a few of the potential ways exercise can help.
When the body is in a state of stress that is producing a “fight or flight” response, exercise can for many people help reset the nervous system so that it returns to “rest and digest” mode. That can sometimes mean performing intense exercise, and that can sometimes mean engaging in slower and more mindful movement.
The type of exercise that feels the most helpful to reduce stress will vary from person to person, and from situation to situation. I love helping people to recognize what it feels like in their body when they need one type of movement versus another to regulate their body’s stress response.
Many forms of stimming are exercise/movement! Physical activity can help meet proprioceptive, vestibular, visual, auditory, interoceptive, and other sensory needs. Again, exactly what exercise meets which sensory needs will vary from person to person. Proactively meeting sensory needs is one part of self-regulation that will help reduce the likelihood of major stress responses.
Exercise can also be an important part of developing independence with communication and daily activities. All autistic people have motor developmental differences to one degree or another. In some cases, motor challenges can lead to difficulty with communication or independence with various tasks, which can cause frustration. Exercise to help develop motor skills can help to increase autonomy, reducing that frustration.