For the final week of Autism Awareness month, I am going to discuss how to build rapport and promote progress for children who have autism spectrum disorder (ASD) during physical therapy sessions. I have worked with dozens of children with ASD, both in clinic and school settings, and while no two children with ASD are alike, there is a very strong theme amongst my patients and students. Initially, most are reluctant to engage in physical therapy. I have discerned from discussions with parents and children with ASD that there is a high level of anxiety about performing tasks “correctly.”
Many children with ASD, pre- or post-diagnosis, have been frequently reprimanded for undesirable behavior or met with frustration when they cannot perform a seemingly simple task. I want to make it very clear that there is no fault to be assigned for this. The reality is that children with ASD do exhibit behaviors that are socially unacceptable. If a typically developing child were to do this, correction or discipline would teach him to respond differently in the future. However, in the brain of a child with ASD, “acting out” is often triggered by overwhelming sensory input, and the abnormal behavior is a release for the discomfort he feels internally. Behaviors may include yelling, repetitive movements, disengaging, or high impact activities such as stomping or “crashing” into objects and people. While we cannot grant a free pass to these behaviors, we must recognize that the threshold for tolerating sensory input is different for a child with ASD compared to a neurologically typical peer. Learning coping strategies comes more naturally to a typically developing child.
As providers, we can learn to identify subtle cues that may be leading to a behavioral “explosion” or the ever-dreaded meltdown. This can be done by observing a child’s body language and combining that with the history we have obtained from the parent. We must recognize that a child with ASD may not fully understand why his behaviors are undesirable, so he may present as being constrained or defiant. This allows a child to disengage from participation and avoid any anxiety that comes from new situations, activities, or people.
The first step I take when meeting a child with ASD for physical therapy is to observe what his sensory seeking or comfort habits are. Most often, I can find a way to incorporate this into a session, as long as it is safe. The second step is to ask the parent or guardian if the child has a preferred toy or comfort item that could be used in therapy. Because children with ASD rely so heavily on routine and familiarity, they will be more likely to engage if they have something that makes them feel grounded and safe. I also want to know if the child has any strong aversions or triggers that can lead to non-compliance in sessions.
It is very hard for a child with autism to build a rapport with someone new. When therapy starts, he is coming into a new situation, with a new person, a new place, and is presented with unfamiliar activities. This causes a lot of stress and necessitates spending time building rapport. Progress may be slower than anticipated, but once the child realizes that the physical therapist is someone he can trust, he will be more likely to engage in activities of the therapist’s choosing. There are different ways to build this trust, depending on the child’s presentation.
The child who behaves in a constrained way often presents with a flat affect, does not engage with the therapist, and become very upset when shown a new game or activity. Such children’s body language reveals that they are in a “frozen” state; they may keep their limbs positioned rigidly or curl up in a ball. They may start to cry. They do not want to engage in therapy because the tasks are intimidating, and they have anxiety about “doing it right.” When I work with a child who presents in this manner, it may take 2-3 sessions just to get him to identify an activity that feels safe for participation. In these cases, comfort items and preferred toys are valuable. Including parents in sessions can be beneficial. I have taught parents to perform certain gross motor activities, and then had them teach the child. The parent is a safe presence and can mediate between therapist and child. Further, this is beneficial for a parent; I always prescribe home exercises, and if a parent performs them with a physical therapist present, she receives feedback as to what is correct form and what she can expect from her child at home.
As the constrained child’s comfort level increases, a parent’s role in sessions can fade. This does not occur on a predictable timeline, but we can identify the subtle cues that indicate rapport-building. The child may look at the therapist rather than parent in sessions, begin interacting with the therapist in small ways, or initiate new tasks with less protest or hesitation. Participation can be incentivized by rewards, whether those are stickers or free play at the end of a session. Other ideas may require collaboration with the child’s parent such as some kind of treat, technology time, or an activity the child enjoys outside of therapy. The child with ASD may not grasp the intrinsic value of gross motor development because the activities are challenging, but he will be able to understand a more concrete reward.
If a child presents to therapy with defiant behaviors, my goal is to create a sense of calm. Just like the constrained child, the defiant child has anxiety about correctly performing an activity or engaging in something that is new and thus uncomfortable. His response is different and can involve crashing into a wall or onto the floor, yelling, running, or engaging in activities without permission. It is an outlet for his anxious energy, but it is also a way to avoid interacting with the physical therapist and exert control over his situation.
A parent’s involvement may not be as beneficial when working with a defiant child as it is with the constrained child. The parent affords the child another distraction. If the parent is unable to help the child to calm down and focus, I may take the child to a quiet area and allow him to choose a toy or activity. I can relinquish a small amount of control over the session to allow him to feel safe. I can then integrate his choice into a variety of activities conducive to gross motor development.
Whether I am working with a child exhibiting constrained or defiant behaviors, I observe body language. In the case of the child who is constrained, I look for ways to help him “open up.” This must feel safe to the child, and at the same time, foster greater interaction with the environment. One student I have worked with comes to mind – he prefers to sit “perched,” with his feet on a chair and legs against his chest. This creates very abnormal posture when he is at a desk and using his computer. It is not conducive to being in a classroom. He did not respond to verbal reminders for good posture or to postural exercises, because no matter how many reminders I issued or how strong his core muscles got, he “did not feel safe” when sitting normally. Through some trial and error, we found was that sitting with two couch pillows between his chest and his desk made him comfortable. This allows him to now sit with nearly normal posture.
When working with a highly activated child, I begin by following his lead. He is typically looking for sensory input, and I observe what he is doing to obtain it. Once I see what behavior he is engaging in, I can use it to direct an activity. If he wants to be in motion, I may work on heavy pushes and pulls to provide calming. Maybe I can entice him to go out in the hall to “explore,” and he can help me open the heavy gym door. I once had a patient who threw himself onto the ground and refused to participate, so I pretended to “glue” him there. When I tried to lift an arm or a leg, he used his muscles to push his limbs down and keep his position. While he felt he was exerting control over his session, he was actually performing a resistance exercise. This also provided a grounding sensation and allowed me to engage with him, and after about five minutes, he began giggling and was more open to other activities.
When working with a child who has ASD during physical therapy, it is important for us, as therapists, to slow down and remember that our patient does not experience the world as we do. He likely has a lot of anxiety about “doing things right” and is already overwhelmed by being in a new situation. We can acknowledge that early sessions may be better spent building rapport with a small amount of gross motor work. As physical therapists, we may have to shift from being “results-oriented” to “process-oriented.” When the child with ASD feels safe and comfortable working with a provider, progress will come, and it will be appreciable, but it has to start on a foundation of trust.