As an autistic person who also happens to be a physical therapist (PT), and who has needed to work with PT both for myself and my child, I have seen the good, the bad, and the ugly in terms of how PT can go when you’re autistic. And I have some thoughts.
Let’s talk about the good! Physical therapy, when things go right, can not only help you feel better, but is an opportunity to learn fascinating things about how your body works. A good PT will have lots of interesting bits of information and insights to share. Working with a PT on feeling better, plus learning about what works for you as an individual to more generally support your health, can be an amazing, and empowering, experience.
And now, ahem, for an example of the bad. Sometimes physical therapy can be a rather invalidating experience. I remember the first time I attended PT, which was for a teenage hamstring injury. The gym space was very bright and smelled like rubber and cleaning supplies. The PT used their hands to apply deep pressure to my injured muscle and tendon to help reduce tightness, and it was unclear to me whether I was supposed to ask for the pressure to be reduced when it became very painful. Afterwards, the PT had me run on a treadmill, said “yikes,” and then called some coworkers over to marvel at my awkward gait pattern. Performing the exercises the PT recommended for my hamstring ultimately helped me recover from the injury, but going to the clinic always made me anxious.
In the world of pediatrics, I’ve met physical therapists who do an amazing job of creatively setting up children’s environments to give them opportunities to build skills, while the kids also have a blast. I’ve also seen pediatric PTs who have not allowed children bodily autonomy and the chance to say “no” to activities that cause them distress.
Physical therapy can be so helpful, and so needed for a variety of the health issues we navigate as autistic people—but as you can see from these examples, there’s a very wide range of both positive and negative experiences autistic folks can have. A lot of this comes down to the PT’s ability to partner with you to meet your, or your child’s, individual needs.
So, how can you figure out whether a physical therapist is likely to be a good fit?
First, let’s consider why you might be looking to work with a PT. Physical therapy can be helpful if you’re dealing with issues that are more common among autistic people, for example:
- Difficulty coordinating movement for daily activities, or hobbies/sports
- Hypermobility spectrum conditions (including Ehlers-Danlos) and related health concerns
- Pain and/or musculoskeletal injuries
- Balance or dizziness issues
- Pelvic health concerns (bowel/digestive, bladder, and reproductive pain or functional issues)
- Motor developmental challenges in younger children (including motor disability that may affect a child’s ability to communicate, in which physical therapist/occupational therapist (OT)/speech language pathologist (SLP) collaboration is indicated)
- Dysautonomia (autonomic system dysfunction)
- Other conditions: Osteoporosis, cardiovascular conditions, neurologic conditions
Let’s say you’re dealing with one of the things listed above, and you’re researching physical therapists in your area. What might you ask about prior to setting up an appointment?
Here is a list of questions that might be worth looking into beforehand. Not every single one of these questions will be important for every single one of us; you should choose to ask about the things that are most relevant for you and/or your child.
- You may decide to ask if the physical therapist has experience working with autistic patients. If the PT does nothave experience, are they open to learning from you if you share some resources with them ahead of time?
- If you are seeking PT for your child, can the PT directly collaborate with occupational therapy or speech therapy if needed? How does the PT handle situations where a child refuses an activity? It’s important to seek out pediatric PTs who encourage child autonomy and choice, and who do not use compliance-based strategies (rewards, withholding preferred items) to get children to participate in activities. When a child declines to participate in an activity, or is distressed during a therapy session, there is always a valid underlying reason, and therapists should not push children to engage in activities that are dysregulating. Look for a PT who will work with you and your child’s OT or speech therapist to understand your child’s underlying needs, in order to make the PT experience feel enjoyable and safe.
- If you are seeking physical therapy for a hypermobility-related issue, is the PT experienced in working with people with hypermobility spectrum conditions (hEDS, HSD)? When supporting hypermobile people, PTs need to be familiar with how to adjust exercises to fit each individual person’s body, know how to make bracing and/or taping recommendations, have awareness of the multiple factors that can contribute to pain for hypermobile people, and know how to screen (and refer out, if needed) for other health and medical needs that can be more common with hEDS/HSD.
Now it’s time to consider some very matter-of-fact questions that can make a big difference in your PT experience
- Where will you be working with the PT? In your home? In a clinic? Somewhere else? Virtually with video appointments? If you are considering telehealth video appointments, consider whether this feels like a good match for your learning and communication styles. If you’re going to attend PT visits at a clinic, will you be working in a big gym space with lots of noise and other people, or in a quiet space one-on-one with the physical therapist? Does the clinic have fluorescent lighting? Does the clinic have a no-fragrance policy? Generally, is the PT open to adjusting the sensory environment if anything is uncomfortable or distracting for you?
- Will you work with the same PT for each appointment? This is important to ask if you would prefer consistency in who you are working with.
- Will you be working with a physical therapist for your whole appointment, or will you be doing some part of your appointment with a PT “aide” or “tech”? Often, there will be less time to communicate directly with the PT in practices that use aides/techs to supervise activities, and these practices sometimes have sensory environments that are more on the overstimulating side of things. One thing that can help minimize sensory stress in these sorts of clinics is to attend the first or the last appointments of the day, when there are likely to be fewer people in the space moving around and making noise.
- How long will the PT appointments last? If you know you tend to need longer to communicate your symptoms during healthcare appointments, it can be helpful to find a practice where the appointments are 45-60 minutes, to allow enough time for both communication and whatever other activities are needed.
- If you use Alternative and Augmentative Communication (AAC) to communicate some or all of the time, is the PT experienced in working with people who use AAC, or open to learning more about the type of communication that works best for you?
- If you experience interoception challenges (difficulty noticing and interpreting internal body sensations like pain, fatigue, or other symptoms), how will the physical therapist work with you to monitor how your body is doing and whether your PT care needs to be adjusted?
- What will the PT activities involve? Is the PT open to adjusting the activities or changing the plan if any of the activities don’t feel like a good fit for you? For example, if your PT suggests manual therapy to help reduce pain and you find tactile input from hands-on treatment uncomfortable, can the PT help you to get the same effect with exercises instead? Pro tip: there’s always more than one way to help to reduce pain or practice movement, and it’s best to avoid PTs who use a “one-size-fits-all” approach.
- It’s important to be able to get in touch with the physical therapy practice for scheduling in a way that feels comfortable for you. How can you get in touch with them to schedule appointments, and how will you get appointment reminders? Does it have to be by phone? Or can you use email or text messages?
- Will you receive home exercise or self-care instructions? How will reminders for how to perform your home program be given (verbally, on paper, via email, via app)?
- Will your PT communicate relevant information directly to your doctor, beyond the standard evaluation or progress reports that they send, if you need help communicating certain information to them?
As I mentioned earlier, we each have our own individual needs, so some of these questions will be more important to one person, and others will be important to the next.
Once you get started with physical therapy, here are some signs you’ve found a good fit:
- You feel heard and understood by your physical therapist
- Your PT has taken your thoughts and feedback into consideration when designing your PT program
- The activities during your PT appointment, and the activities that you’ve been assigned to do at home, feel doable
- Your physical therapist has explained, in a way that makes sense to you, how the different parts of your PT program are going to help you achieve your goals
- Your PT has been collaborating with the other members of your healthcare team, and shares with you when they see any signs it would be helpful for you to work with other healthcare professionals, if needed
And here are some signs you may want to start looking for another physical therapist:
- Physical therapy is feeling stressful
- Your PT describes your condition in a way that makes you feel “broken,” or like it will be impossible to get better (unfortunately, some PT’s do take a rather “deficit-based” mindset… and this can negatively impact your care)
- The PT exercises or activities are too hard, or too easy, and the PT does not adjust your program to better fit you
- Your PT rushes through communicating with you, and you feel like you don’t have a chance to share or discuss important information
Remember, if you get started with one physical therapist and it doesn’t feel like a good fit, you can absolutely seek out care with a different PT. Having a strong alliance with your PT is hugely important!
Wishing you an enjoyable and productive physical therapy experience!