My PKG IAP Health Experience
A month of learning, serving, reflecting, and becoming (maybe too) familiar with the 1 Bus*
*Case in point:
- The traffic light at the corner of Albany St. and Mass Ave. is definitely not timed correctly. Someone who is familiar with scheduling problems — please fix this.
- Friday night 1 Bus to Harvard = less predictable than my sleep schedule.
- I can outbike two 1 Buses down Mass Ave.
What comes to mind when you think about autism? Perhaps you envision different methods of communication. Maybe the idea of fixed interests or repetitive behaviors pops into your head. Might you be considering the word “spectrum”?
Before beginning the PKG IAP Health program, these were certainly the ideas that popped into my head. I will admit, prior to this month, I understood very little about autism; however, this only inspired me to come into the program with an open mind ready to learn. And learn I did. While it would be nearly impossible to enumerate every piece of the vast wealth of knowledge I’ve accumulated over the past four weeks, I highlight below some of the most important takeaways from my time at the Autism Program at Boston Medical Center (BMC).
1. “If you’ve met an autistic individual, you’ve met one autistic individual.”
One of the first things I did upon joining the Autism Program team at BMC was — as you may have guessed — go through many training materials. But Sabrina, why would you even mention training materials? That’s not what we’re here to read about, you might protest. But hear me out: the orientation videos, recordings of conference talks, and in-person autism spectrum disorder (ASD) training talks offered an excellent introduction to ASD.
One key idea that kept resurfacing throughout training, especially during Alex’s* ASD 101 training for the BMC community, was the statement that “if you’ve met an autistic individual, you’ve met one autistic individual.” And it makes sense. Sure, autism could mean an individual communicates in a different way, has special interests, is sensitive to certain sensory stimuli, and has certain behaviors they like to perform repetitively. But ASD is an infinite spectrum, and there is no combination of characteristics or representative individual that “defines” ASD.
At the beginning, I took this statement at face value, but as I progressed into my internship and had the opportunity to shadow in the clinic, I began to see the truth of this statement for myself. I’ve met 4-year-olds who can count to 100 forwards and backwards; recite the alphabet as they play with blocks; and speak sentences in Japanese, Russian, Mandarin — you name it — without having the least bit of exposure to it in their home environments. Yet, when you call their names, they have no interest in looking at or talking to you. There are also children who will look pleadingly into your eyes and ask you to make a Play-Doh cake with them, but when it comes to counting to 10 or singing the ABCs, they are simply not interested. All of these children have a diagnosis of ASD, but they are each unique in their own way.
*Alex Friedman is the amazing director of the Autism Program at BMC!
2. We mean well, don’t we?
When it comes to managing ASD, one of the most popular options available is Applied Behavior Analysis (ABA). In short, the goal of ABA is to apply our understanding of how behavior works to improve social skills in autistic individuals. I would argue that, the vast majority of the time, parents/guardians and providers suggest this treatment because they mean well — they want kids to be able to make friends, succeed in school, and lead happier, more independent lives. However, there’s another side of the story that we less often hear about: What are the opinions of autistic individuals themselves?
This is a question we tackled at one of our weekly reflection dinners with the PKG team*, where we have a delicious meal together (read: just one more reason why this program is so amazing) while tackling some of the most pressing issues in healthcare. As it turns out, the highly popular ABA therapy being recommended everywhere may not be received as warmly by autistic individuals as we might think. For example, ABA therapy can take up to 20 – 40 hours per week for children on top of their time spent at school. Could you imagine being expected to fulfill your duties as a student and then tacking on an additional full-time job? As an 8 year old? But the story doesn’t end there. There’s also another problem, which is that children have no say in whether they want to get ABA therapy. They are simply whisked away to participate in tens of hours a week of doing the things they dislike the most. If your worst fear is talking to other kids in a park, and now you’re spending 20 hours per week being encouraged to socialize with kids on the playground, that would be…terrifying?
These dilemmas beg the question of whether the approach of therapy is right in the first place. Instead of focusing our energy on therapies for autistic individuals and “fixing” certain behaviors, maybe what we need to do is embrace their uniqueness. And instead of placing the burden of bridging differences in communication and social interaction entirely on those with ASD, perhaps we can consider ways in which we can be more accommodating of their special abilities.
This is not to say that ABA therapy is bad or should be avoided. In fact, ABA has had many successes in improving social interaction in those with ASD, which is why it’s so popular in the first place. Additionally, as mentioned earlier, a family’s decision to place their children in ABA therapy often comes with loving intent. However, I present this section as a call to consider additional perspectives on how we can achieve the same goal using alternative methods that may not be as burdensome for our autistic community members.
*Shoutout to Vippy, Kristie, Nadia, Tayler, and the rest of the PKG team for making this program possible 🙂
3. Healthcare is more holistic than I previously thought
We all know the process: Every year, you set up your appointment for a wellness check, where a nurse measures your height and weight and asks you some questions about your health, and then the doctor comes in and performs some additional checks and prescribes medications as necessary. Within the hour, you’re out the door and on your way to something else. However, as I learned this IAP, it is so much more than that.
Do you ever think about what happens before and after you go in for your visit? The physician reads your medical history and identifies topics that they would like to discuss with you. If they see something in your record that is unclear to them, they may reach out to other providers for more information. If you prefer to speak in a language other than English, the physician arranges for a medical interpreter to be present in the visit to facilitate communication. Then, after your appointment, the physician documents all of the points discussed during the visit, and if either you or your physician identifies the need for additional resources, the physician will connect you to them. In the case of ASD, these resources often consist of recommendations for ABA therapy and connecting the family with an Autism Resource Specialist (ARS) in the Autism Program at BMC.
It is at this point in a patient’s healthcare journey where the projects I worked on made the most impact. For context, two of the projects I worked on were 1) writing safety tips of the month and 2) aggregating probate & family court resources for families. Safety tips of the month are released monthly as part of the Autism Program’s newsletter for families and include tips on how to keep children safe and programs or products that can help achieve this goal. Meanwhile, families often use probate & family courts to settle guardianship matters for transition-aged autistic youth. Additionally, throughout the month, my colleagues and I made many calls to families to ask how healthcare providers can best support autistic individuals, including any special needs, sensitivities, or interests they may have.
Together, these projects and my observations in the clinic gave me insight into the many ways patient health is supported outside of the traditional medical visit: arranging for therapies, supporting autistic children in school and in their communities, providing resources for guardianship and other legal matters, and collecting information to make medical visits as smooth and accessible as possible, among many other services. Healthcare consists of much more than the time you spend in the doctor’s office — there is lots of preparation and individualized support that happens behind the scenes that help individuals grow holistically.
4. Double jeopardy
During my time at the Autism Program at BMC (one of the largest safety net hospitals in the Boston area), besides the wonderful projects and clinical observations that I engaged in, there were also weekly literature seminars and chief rounds that I took part in. BMC serves an incredibly diverse patient population, and as part of an effort to better serve these individuals, physicians engage in these weekly educational/professional development sessions. While seminars ranged in topics, some sessions were focused on looking at the social determinants of health and other aspects of health related to one’s background, environment, and living situations.
A bit of context first. As we learned in one of our weekly reflection dinners with the PKG staff, the social factors that influence health outcomes (including socioeconomic status, housing, education, etc.) are extremely important — so important, in fact, that they are the single biggest predictor of health outcomes. First, imagine that you live in a neighborhood where there is environmental pollution, limited access to healthy food sources, small amounts of green space for recreation and exercise, and increased stress due to shortages of affordable housing. Now, imagine that you live in a different neighborhood with a clean environment, lots of produce markets with fresh fruits and vegetables, parks where you can play soccer or go for a jog, and plenty of homes available for purchase. Even without considering any other medical or lifestyle factors, it’s already clear that one neighborhood predisposes an individual to a health advantage. And that’s only the beginning of the story. If you develop an illness, now what? Maybe public transport is slow and undependable, and you can’t guarantee that you can show up to appointments on time. Even if you show up on time, what about paying for healthcare — is there insurance available to cover the immense costs?
As you can begin to appreciate, a person’s health is influenced by genetic, lifestyle, etc. factors, of course, but even more so by social factors. That’s where the concept of double jeopardy comes in. Individuals may already be struggling with the social conditions that put them at a health disadvantage, and when they are given a diagnosis of autism, this adds another challenge to the healthcare experience. Prior to my internship at BMC, I had heard of the concept of the social determinants of health, yet it was this past month that called for me to seriously consider the impact of such factors on healthcare and how we can begin to mitigate some of these problems. The lessons I’ve learned are ones that I will take with me as I progress in my career, with the hope of becoming a practicing physician in the future.
What’s next?
I’ve gained an incredible amount of knowledge over the past month: discovering what ASD is, learning how we can support ASD patients in the medical office and beyond, hearing new perspectives on healthcare (from providers and patients themselves), becoming aware of how social factors influence health outcomes, and brainstorming ways of decreasing the negative effects of social inequalities on the healthcare experience. There are plenty of ways to begin effecting change in the community — participating in advocacy or fundraisers, educating peers on the cultures of our community, and bringing people together to embrace each other’s unique backgrounds and accept them for who they are, among many other activities. Moreover, as someone going into healthcare in the future, this experience has enlightened me as to how I can be a more understanding, accommodating clinician who can advocate for each individual’s needs.
Acknowledgements
Thank you to Alex Friedman and the Autism Program at BMC for organizing this wonderful learning opportunity, and special thanks to Sara Bastin for being an amazing mentor and supervisor! I’d also like to thank Vippy, Kristie, Nadia, Tayler, and the rest of the PKG team for making this program possible and for their support, kindness, and dedication to their students. Lastly, shoutout to the rest of the IAP Health cohort — Charvi, Katherine, Jeffrey, Pari, and Srihitha — for being wonderful colleagues and for making this experience exciting and memorable!
To learn more about the PKG IAP:Health program, click here.