With many of my teenagers at this school, I work on community mobility goals, especially with the students that are in the “basic” program (a program in which they do not receive a high school diploma from but an IEP diploma instead, the program focuses on life skills and functional skills as opposed to just academic skills). With many of my students who have these goals, we look at subway maps and talk about how to read them, and plan routes from point A to point B. This is not one of Jason's goals, but Jason always requests to look at subway maps in OT sessions. However, he has more knowledge about the subway system than most MTA workers probably do! He loves inventing “challenge problems” and will walk into sessions and ask things such as, “So today can we look at the subway map and can we try to figure out how to get from point A in Brooklyn to point B in the Bronx and pretend it’s a weekend, so line X runs a modified route and line Y doesn’t run, and there’s a snow storm and all elevated lines are not running?” Since looking at the subway map brings him so much joy, but is not therapeutic to address since it is a skill he already excels at, I came up with an idea. In therapy, I have been having Jason write down subway problems and answer keys for other students with whom I am working on community mobility with to figure out. This helps him work on his organizational skills, and the legibility of his handwriting, which are goals of his. This also helps him with social skills, because it is very hard for him to understand that not everyone understands the subway system as well as he does. I do let him write some “super duper challenge questions” that he really enjoys to figure out, but then I try to help him understand how to simplify things and create “beginner” questions that his peers may actually be able to do. Bingo! He gets to look at subway maps in OT, but I have made the exercise more functional for the skills he needs to work on. He feels so honored to have taken on this responsibility of creating subway problems for the kids I work on community mobility goals with. He loves to hear how the other kids are doing with the problems and continuing to create new ones. Jason has become my resident community mobility expert at the school.
After working with Jason twice per week for the last 2 months, one thing he told me served as a huge eye opener for me as a young therapist. For a young man who loves the subway system so much, and is so adept at theoretically navigating the subways, I incorrectly assumed that Jason was independent in community mobility, therefore it did not need to be an OT goal of his. Then, one day, I do not even remember exactly what we were talking about (as many of the conversations we try to have somehow end up relating back to the subway system), but he ended up mentioning something that shocked me. He told me that he cannot ride the subways by himself, and does not actually go anywhere in New York City on the subway without his mother! He revealed that the crowds on the subway and all the loud noises bother him too much and make him anxious, and he is afraid to go anywhere alone without his mother for this reason. A high functioning, bright teenager who is an expert on the subways, cannot ride the subway independently! Out of all my students at the school, I expected Jason to be the one who is most independent in community mobility because of his extensive subway knowledge and uncanny ability to quickly figure out how to travel between two points in New York City during any time of day or any unplanned circumstance. I felt so silly for assuming this, because I am aware that as OTs, we are taught to be masters of holistic thinking and task analysis. We learned in grad school how to think of all factors that are involved with everything our clients need to do on a daily basis. However, it just didn’t occur to me to ask him if he has any difficulty with community mobility because Jason spends so much time talking about it and demonstrating theoretical competence with it.
**Lightbulb moment!** There are a lot of generalizations here, but individuals with autism tend to have very strong visual/visual perceptual skills. Which is why PECS (a picture exchange communication system for kids with autism who have limited or no verbal abilities), picture schedules, pictures of each step of tasks, and pictorial social stories are so successful with individuals with autism. Also, individuals with autism tend to think very concretely and logically. So, it is not surprising that reading a subway map and quickly being able to determine even difficult routes is a breeze for Jason. Riding a subway is completely different! The sensory challenges of riding on a subway are monumental. (Why didn’t I originally consider this?? I spend most of my professional life addressing sensory challenges with the little kids at the clinic!) People with autism are frequently very auditorily defensive, meaning their brains process sound differently from people with typical neurology. Their brains have difficulty processing and interpreting auditory input, and as a result often everyday sounds that are noxious to most people can be overwhelming and even painful for those with autism. Additionally, people with autism often have difficulty processing input from other senses, such as the sense of movement (vestibular) and the sense of touch (tactile), and have a lot of sensory sensitivities. This is the case for Jason. Being on a subway is a very intense sensory experience for even people with typical neurology. The subway car starts and stops frequently, and dives underground and rises above ground quickly, in addition to sometimes making quick turns. The track can be bumpy. The car can sometimes vibrate and shake. There is gratuitous noise. The wheels screech. The doors ding. The conductor makes announcements. A booming computerized voice is constantly updating the passengers about the next stop, the current stop, to be mindful of the closing doors, to keep an eye on belongings. People talk to each other at loud volumes. On a crowded subway car you will be brushed against by many different people and their different textured coats and bags. For someone with autism who may have sensory processing difficulties and sensitivity to some sensory input such as auditory, vestibular and tactile input, it can be overwhelming and even traumatizing! No wonder Jason, despite his subway knowledge and navigational skills, cannot bring himself to ride the subway alone without the comfort of his mother!
This to me was a reminder about to never assume things, and to always consider all aspects of a task. Considering the environment, all skills required both cognitive and physical, and body systems required including sensory processing, is just as important as the actual steps of the task being performed. This goes down to the very core of what occupational therapy is, and we as OTs learned that in OT school ad nauseum. I learned that I should not have assumed independence in community mobility for Jason just because he is an expert in theoretically navigating the public transit system. There are so many more demands intrinsic to the task of riding the subway and factors that are part of Jason's neurological processes that are limiting Jason’s ability to be successful in this task. All these aspects need to be addressed that I originally did not fully consider. As OTs, we need to constantly remember, that more than any other person our clients work with, we are equipped with the skills to analyze all areas of every single task and occupation. Even though the goals on paper may say “will be able to determine the route between two points in New York City using the subway map to improve independence in community mobility skills,” there is so much more to riding a subway than that, and we are responsible for helping out clients find the tools to be successful and not just addressing the goals at face value.
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