IAP Health: Sarah Lincoln (’22)
Near the start of the pandemic, when the world seemed helpless and I felt useless, I set up a meeting with Sarah Bouchard. I figured the PKG Center of all places would be able to connect me with meaningful work from behind a screen—and I was right. As soon as she mentioned the PKG’s IAP internship with Boston Medical Center’s Autism Program, I knew I would apply.
My four-year-old nephew, Jamison, was diagnosed with ASD at the age of two and autism had been on my mind more than usual for the past few months. Amidst disagreements over how long to continue ABA therapy and when Jamison should start school, my brother’s marriage fell apart and he and Jamison began spending more time at our house. As a silver lining amidst so much chaos, I got to see my nephew grow up, learn how to ask questions (he loves asking everyone what type of car they drive and what color it is), chase my dog around the house, and explore with the other neighborhood kids. I looked towards the Autism Program’s initiatives with appreciation and, honestly, a little bit of envy. I wondered how my brother and nephew’s lives would be altered if they had access to similar supports.
You can imagine my excitement when I learned about my placement with the Autism Friendly team. The Autism Friendly Initiative (a program within the Autism Program) focuses on improving the healthcare experience of patients with ASD by:
- Individualizing patient care
- Modifying the sensory environment
- Training clinicians, staff, and students
- Providing support in preparation of visits
My fellow intern Jeff and I were given several projects to further these ends. My favorite had to do with the Autism Support Checklist (ASC) initiative. The ASC is a survey administered by phone to the caretaker of an autistic pediatric patient in order to gather information including their communication and sensory needs. Collected information is then logged into the patient’s medical record so BMC can provide optimized, individualized care. Our supervisor Alex gave us a phone script and a massive spreadsheet with all of BMC’s recent autistic pediatric patients and told us to start making calls.
The Autism Support Checklist questions, which we complete during these calls. Afterwards, the info is condensed into a summary which goes on the patient’s electronic medical record.
Even though I was working off a script, no two calls were the same. Many people didn’t pick up, or answered but asked me to call back at a better time. Despite the pandemic (or even because of it) many of these parents are busier than ever. With school and childcare programs moved online, they’re now juggling all of the hats. Some parents who completed the survey gave very direct answers, others went on for minutes about what makes their child excited or upset.
Sometimes calls veered off-script. One mom came to me with concerns about overlapping diagnoses in her son’s medical record. Another told me that the child I was calling about had since switched custody. While I wasn’t trained to handle these situations directly, I was able to pass these concerns onto my supervisor, Alex. Who knows when these issues would have been resolved if it weren’t for the survey calls!
On many occasions, I would make a call to a number whose preferred language was listed as English, but after a couple of minutes of conversation, the person on the other end would request a callback with an interpreter. Statistically, this wasn’t surprising — 32% of BMC’s patient population does not speak English as a primary language. In order to reach these patients as well as those already listed under a different language, Jeff and I learned how to navigate the vast, convoluted landscape of interpreter services. While these interpreter-service-mediated calls were objectively the most draining, I found them to also be the most rewarding, since it meant we could reach patients without inadvertently discriminating based on their primary language.
Jeff and I will continue to work with Autism Friendly after IAP, and personally I can’t wait to keep making these calls. Every ASC we complete has the ability to transform an individual’s experience with the healthcare system, and we can’t even begin to quantify the resulting downstream benefits. I feel so fortunate to have found such impactful work in a pandemic, and with such a fun, supportive team working beside me!
The PKG IAP Autism Friendly team: Jeff, me, and our supervisor Alex!