As a medical student who has always wanted to broaden my perspectives and approaches to working with a diverse patient population, I encountered an issue with my medical school’s curriculum. What bothered me was the fact that there was not much of an emphasis on working with patients with disabilities. Reflecting on my first two years of medical school, I recalled that there were a few seminars and workshops where we invited disabled individuals with specific “lived experiences,” but we had limited exposure to what their patient experiences were.
Other than those lectures, there was no formal, substantial training that was part of my learning experience as a medical student. I knew that the few hours of clinical exposure I had were not going to be enough to serve disabled individuals better as a clinician.
Luckily, I came across a program on campus that could bridge the gap I found in my education. It was called the Leadership Education in Neurodevelopmental and Related Disorders (LEND) program, sponsored by the School of Social Work at Stony Brook University. The program director of our LEND program coincidentally was one of my favorite guest lecturers in my bioethics course, and I was excited to discover that the LEND program was a federally funded program that focused on educating clinicians on how to care for the neurodivergent population (of note, Stony Brook University is one of the 60 LEND programs available across the nation).
I was drawn to the LEND program because of its unique curriculum and program structure. In addition to weekly didactics and monthly clinical seminars taught by prominent leaders serving the disability community, I could also have direct patient encounters at clinical rotation sites associated with the LEND program. The network established through LEND allowed me to meet experts and leaders who have served at the state and federal levels to advance the rights of, and advocate for, individuals with neurodevelopmental disabilities.
To receive the most comprehensive training, I applied to become a long-term trainee, which required spending over 300 hours of training to learn how to better work with a patient population with neurodevelopmental disorders. I soon found out that I had thankfully become part of a cohort that included community leaders, healthcare professionals, teachers, social workers, disability studies scholars, and many more professions. I was surprised and somewhat disappointed to learn that only a few medical students applied to and joined this group, despite the educational gap I noted earlier. Regardless, I looked forward to receiving professional training to boost my clinical competence and promote inclusion in this interdisciplinary educational setting.
During orientation, I discovered that every trainee was tired of working in isolation and felt my same desire to understand how we might better serve the neurodivergent population. Similar to my experiences as a medical student, almost everyone in my cohort worked with allied professionals in a limited capacity and did not fully understand the extent to which other disciplines could be of service to this population. This meant that even if professional services needed by the neurodivergent population existed and were offered, many patients did not have access because the professionals involved in their care were not well-connected or working together as an interdisciplinary team to cover all bases.
The biggest takeaway for me from the program was the fact that the everyday issues the neurodivergent population face are largely unknown to clinicians. One common problem is sensory stimulation that easily overwhelms patients in clinical settings. The level of noise, vibrant colors, and even texture of anything that touches their body could easily overstimulate and subsequently alert them way beyond what neurotypical patients can tolerate. In such instances, we cannot immediately assume that they are challenging patients or overreacting per se, but their natural perception and reactions to their surroundings differ from those of neurotypical folks.
Communicating pain is another issue, especially among nonverbal patients, as picking up signals on what is truly bothering them could be a mystery. With such patients, the role of caregivers and their ability to provide a comprehensive history becomes extremely important. Yet these patients often come from group homes where the level of care and attention provided by staff varies widely, and the pertinent clinical details physicians need are not readily available.
In my experience in clinics, neurodivergent patients who cannot communicate the level of pain well generally have extremely high levels of tolerance to pain and go about their days normally until problems become visibly concerning. One patient had more than five rib fractures on x-ray, but followed his normal routine and participated in programs offered through the community without any issues. I don’t know how he handled it, but something like this is a rather common scene observed by clinicians in this field.
As I continued to work with this patient population, I realized that only through greater exposure and encounters would I better understand how to provide the care they need and address systemic issues. It still pains me, as families of neurodivergent patients are struggling to find competent, experienced clinicians whom they can trust when seeking medical attention. Perhaps the current training we have been receiving for decades is not comprehensive enough.
As a recent medical school graduate, I still feel this way, as the only way I could complement my education in this regard was through the LEND program, not at my medical school. With that said, I hope medical schools can offer outpatient electives that include serving neurodivergent patients.
I encourage my colleagues to seek training through their local LEND programs and to gather resources to help neurodivergent patients and their family members, if they haven't already. Physicians who have family members with autism and/or other neurodevelopmental disorders probably know already how complex coordinating care for them can get. So many patients and their families in New York do not know that they can receive timely help from Office for People With Developmental Disabilities (OPWDD). As physicians, we should be aware of available resources in our community and be able to connect patients to said resources. We may not be the perfect match for them as clinicians, but at least we can be the first doctors to lead them in the right direction.
How have you amended your practice to service individuals with neurodevelopmental disorders? Share in the comments.
