What does it mean to make a hospital more autism friendly?
These were my first thoughts when I was assigned to the Autism Friendly Initiative with Alex Friedman, my supervisor. I was inspired to spend IAP at Boston Medical Center (BMC) due to my proximity with neurodivergence and brain injury through family members and my high school’s Best Buddies. However, my focus at that time was primarily on educational and societal challenges related to autism, such as schools’ ability to accommodate needs, parental support, and peer understanding.
From the BMC training alone, I realized I was missing a large aspect of the well-being of autistic individuals: their healthcare experiences. I knew many people with autism experience hypersensitivity and anxiety. I never considered, however, the effect this would have on receiving medical care. The hospital is full of triggers, from bright lights to blood pressure cuffs to elevators. Naturally, these difficulties make it challenging for healthcare professionals to treat patients; not all are equipped to provide quality care. This is where the Autism Friendly Initiative comes in!
The Autism Friendly Initiative aims to improve the healthcare of autistic patients through various interventions. These strategies include education and training on autism for healthcare professionals and students, implementation of an autism support checklist to identify patients’ unique triggers and communication styles, and creation of healthcare social stories. These social stories, available online, assist autistic patients in preparing for medical appointments by familiarizing them with various procedures and scenarios. (The website has 38 stories as of right now!) These social stories are important because they satisfy the difficulty many patients have with unfamiliarity. During this IAP, I managed the social stories website, translating stories to Greek and drafting a story of my own.
Beginning with the Greek translations, I didn’t realize the impact they could have on a family until I attended a public safety training event where the speaker declared, “Autism shouldn’t only be in English.” These were Liz Gomes’s words, a parent advocate for autistic children. This statement stuck with me as she spoke about her experiences seeing autistic people back home in Cape Verde and the way her family responded to her son’s autism. Her point was that cultural stigmas around autism are very prevalent in other countries and they are damaging and hurtful to families. Here I realized that my translations were a step to making autism friendliness more accessible, which is very necessary in environments where autism may not be as accepted by communities. I also included a social story outlining the steps for undergoing a pap smear. I thought this addition was crucial because discussions around vaginal health are often taboo. It’s important to recognize that autistic individuals require the same screenings as neurotypical people. Their comprehension of medical procedures should not be hindered by societal stigmas or misconceptions. Thus, providing them with information ensures they can navigate appointments and receive the necessary care without barriers.
Fortunately, a website has amazing longevity and reach, allowing the social stories to last as long as there’s someone to upkeep it. The website was created a couple of years ago by MIT students in the same program, so it’s already demonstrated its ability to flourish and grow with each year.
Through my involvement in this project and other initiatives within the Autism Friendly Initiative, I gained a deeper appreciation for the role of advocacy in improving healthcare environments. I learned that even well-established institutions have room for improvement, and it takes collective effort—from parents and healthcare professionals to patients themselves—to create genuinely inclusive healthcare spaces. Ultimately, by fostering autism friendliness within BMC, we contribute to a more welcoming and accommodating environment for all patients.