Mens et Manus. Mind and Hand. This IAP, I had the incredible opportunity to dive first-hand into this mission through The Autism Program at Boston Medical Center (BMC) – the largest safety net hospital in New England. Alongside my mentor, Madelyn Goskoski, I worked on the Resources Team, gaining practical experience and seeing my direct impact on the families we served.
Working in a hybrid format, I had the opportunity to come in-person at least twice a week. These days included many hours of shadowing and observing Developmental and Behavioral Pediatricians as well as the Autism Resource Specialists from The Autism Program – particularly eye-opening experiences. I remember getting teary-eyed when a little boy who just diagnosed with autism ran toward me with open arms as the doctor beside me spoke to the parents about his new diagnosis. The young boy had no idea what had just been said, but to the parents, it seemed as though their child’s entire trajectory was thrown off in just that one conversation. It’s an identity this child will hold on to for a lifetime, and it’s an identity that can be extremely difficult to navigate in our society as it stands today.
Throughout the month, I worked directly with patient families to alleviate some of this stress in navigating this diagnosis. Researching and directing parents and guardians to resources specific to their child, I conducted patient casework, which included calling local organizations to identify autism-friendly spaces, compiling a list of grants a family could apply for to get funding for social skills programs, and even finding sibling support groups within specific neighborhoods. This personalized care that I was honored to be a part of is an incredible piece of The Autism Program that is certainly unique to Boston Medical Center.
I was also able to contribute to a more long-term project – the Sexual Health and Wellness Promotion Resource. This resource is intended to be more of an introduction to behavior, consent, sexual health, and sexual orientation. I drafted the “Sexual Health” section of this resource, including diagrams and detailed descriptions of the “what” as well as the “why,” written at a level that is meant to be understood by a wide range of autistic patients. As an aspiring physician myself, it was especially fulfilling to be able to help our patients navigate such an important (and oftentimes terrifying) transition in their lives.
Another piece of work I would like to highlight from my experience on the Resources Team is drafting Social Stories. A social story is a learning tool that efficiently communicates information on social situations to autistic people through a simple narrative. A patient’s mother had expressed concerns about “stranger danger” and getting her daughter to try new foods, so I wrote two social stories to address these situations. The only catch is, like many (if not most) of the patient families of BMC, this family did not speak English. I utilized translator services along with my prior knowledge of Spanish to translate my stories and send to the mother, and in doing this work, navigating language barriers, I was fascinated by how BMC is able to provide for such a wide range of non-English-speaking families.
As part of The Autism Program’s mission in conquering this language barrier, I even collected and compiled resources in 9 different languages to be added to our database: Haitian-Creole, Khmer, Arabic, Nepali, and Mandarin, to name a few.
Through my experiences in-person at the clinic, I was especially surprised to realize how much of a privilege it is to be able to speak the official language of where you live. While it was remarkable to see how technology can be used so positively via live, virtual medical interpreters during doctor’s visits, these visits often took twice as long due to this significant language barrier. Furthermore, a physician during a seminar discussion one day pointed out how much trust goes into these interpreters. She explained how a mother who spoke Spanish and understood a bit of English quickly requested to stop interpreter services when she realized the interpreter was not translating every detail she communicated. This incident makes me wonder how many other instances like this occur each day, ultimately negatively impacting patient care.
Moreover, families who seek care from BMC are oftentimes already dealing with a plethora of other stressors – paying bills, food insecurity, limited resources, violence, discrimination. Imagine not only being reliant on interpreter services but also being handed an autism diagnosis on top of everything else. Through our weekly dinner reflections at the PKG center, I was in shock to learn how our system makes it even more difficult for low-income families to get the care they need, suggesting that the social determinants of health are just as powerful as the genetic, biological determinants of health. Via discussions on disability justice and more, I learned that the little boy just diagnosed with autism is almost certain to face extreme challenges throughout childhood and beyond. Therapies are not all what they intend to be, and without proper funds, it can take years to get off waitlists for powerful, time-sensitive services. While the main issue is so systemic, I now understand that one of the most significant ways to enact change in society is at the individual level. I feel empowered as an individual to have conversations about these injustices and increase awareness in my community. Slowly but surely, we all can make a difference.
Although I came into this program not knowing exactly what to expect, I now leave with eye-opening experiences and incredible insight into the nuances of navigating an autism diagnosis and the disparity due to social determinants of health. Even since my first day, I felt so welcomed and inspired by The Autism Program staff as they took on us MIT interns as colleagues. Working with The Autism Program this IAP certainly solidified my goals to pursue an MD after graduation from MIT. Enthusiastically attending trainings, literature seminars, team meetings, and pediatric rounds, I immersed myself into the various aspects of the autism diagnosis and pediatrics as a whole, and I would highly recommend this program to any and all of my peers.
To learn more about the PKG IAP:Health program, click here