Walking into a doctor’s office and facing the bright, fluorescent lights. Sitting on the rough, crinkly paper on the exam table. Repeatedly filling out the same dense intake forms about your health history. Situations like these can be an annoyance for neurotypical patients. For neurodivergent patients, they’re obstacles to getting adequate care.
One in five adults in the US is neurodivergent, including those experiencing conditions like autism, attention-deficit/hyperactivity disorder (ADHD), obsessive compulsive disorder (OCD), and Tourette’s. Yet, the medical community is not equipped to serve us. Eighty-five percent of medical students feel inadequately prepared to provide care for autistic patients.
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As an autistic person with chronic illness, I’ve sat in my car and cried after doctor’s appointments where debilitating symptoms were dismissed as anxiety or communication with staff broke down. That’s why as a healthcare executive, I’m working to change that experience for others like me.
Here’s what the medical community needs to know about neurodivergent patients and how they can improve care for this underserved population.
What it means to be neurodivergent
Neurodivergence is a term used to describe variations in neurodevelopment that may cause an individual to feel heightened distress when there’s a mismatch between their environment and their needs. Neurodivergence is not a disease or specific diagnosis. It’s a broad categorization of traits, behaviors, and preferences that affect how people think, learn, socialize and interact with their environment.
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For many in the medical community, there is still a great deal of confusion around neurodivergence and patients fall through the cracks of a system that doesn’t fully understand their needs.
Take autism, for example. It’s often assumed (even by doctors!) that if you’re autistic, you have an intellectual disability, but the diagnostic criteria for autism are tied to sensory and communication differences, and pattern-seeking and repetitive behaviors. It is possible to be autistic and be intellectually gifted, intellectually disabled, or anywhere in between.
Like many women of my generation, I was labeled as intellectually gifted as a kid and school work was easy, but no one saw the intense sensory challenges of my day to day: struggles with showering, brushing my teeth, lighting, temperature, food textures; the list is endless. I survived by suppressing my needs and pretending I wasn’t different – I used to make sure I went to doctor’s appointments in work clothes, showed minimal pain and negative emotions, and worked so much harder than I should have to for my symptoms to be taken seriously. I have never felt safe enough with any medical provider to share the full extent of my disabilities, because I have learned through a lifetime of experience that I will be met with misunderstandings at best and medical bias at worst.
If clinicians are only looking for one or two assumed or stereotypical characteristics, they’ll miss what’s happening with the patient right in front of them.
The entire system is also challenged by a problematic diagnostic model. Historically, clinicians and researchers built diagnostic criteria for neurodivergent conditions based on what they observed, as an outsider looking in. Their work didn’t consider the first-person lived experiences of neurodivergent people.
If I were to sit down and list all my traits, I would probably qualify for not only a diagnosis of autism, but also of Tourette’s and OCD. For those of us living with neurodivergent conditions, the atomization of these diagnoses disconnects us from one another; doctors and others in the medical community need to understand our real health risks and co-occuring conditions, like gastrointestinal issues, connective tissue disorders, dysautonomia and POTS, neurological issues, and even dental and vision challenges. When viewed individually, our diseases are often labeled as “rare, ” but when viewed collectively, there’s growing evidence that many of these health challenges are not rare at all.
We need to find commonalities within the community so we can support each other and find a sense of belonging. However, people who are not neurodivergent, including doctors and others in the medical community, need to do a better job understanding the differences in health status. This will lead to better patient experiences and outcomes.
The current system is failing neurodivergent patients
Compared to population averages, neurodivergent adults experience greater unmet healthcare needs. They’re more likely to avoid care due to previous negative healthcare interactions and are twice as likely to visit the emergency department.
One root cause is the lack of education to train the medical community to care for neurodivergent patients. Clinicians are trained in pattern-matching to come to a diagnosis, so if their training doesn’t include an understanding of neurodivergent differences, it makes sense that they’d struggle with diagnosing this population quickly and accurately. It’s as simple as not being trained to recognize the right patterns. This ‘diagnostic overshadowing,’ as it’s called, can lead to delays in diagnosis and treatment.
People with neurological differences are also more likely to experience co-occuring mental health conditions, like anxiety and depression, or be misdiagnosed as depressed when we are actually experiencing burnout and feeling overwhelmed.
The near total absence of neurodivergent people in healthcare research and care design also negatively impacts care. With fewer than 3% of clinicians reporting that they have a disability (inclusive of neurodevelopmental disorders), neurodivergent patients have a hard time finding providers who understand their unique healthcare needs. This leads many neurodivergent adults to avoid seeking care for potentially serious or life-threatening conditions.
Simple questions to improve care
For me, the amount of cognitive load that is involved in making it to an appointment to talk with a clinician about solving my problem can be disabling. Like many others with neurodivergent conditions, I also have a chronic illness that requires me to deal with the bureaucracy of healthcare on a regular basis. Without the right support, it’s hell.
But it doesn’t have to be this way.
As neurodivergent people, we need to be able to invest less energy in accessing care so we can invest more in surviving as individuals. Clinicians can support this that by asking a few simple questions at the start of an appointment:
- Have you had any traumatic experiences with healthcare, and how did those impact you?
- What are some things I could do, or not do, to make this process easier and more comfortable for you?
Maybe a patient would feel more comfortable sitting in a chair instead of on the table with the crinkly paper. Maybe when the clinician is filling out the electronic health record, they can face both the computer and the patient. Maybe the nurse or medical assistant can allow for accommodations like dimming the lights.
These questions don’t only benefit neurodivergent patients; they benefit everyone, bringing a level of humanity to parts of the healthcare process that can feel cold, sterile, and inefficient. Every question is an opportunity to draw out new information to connect earlier and more thoroughly with a patient; to build trust; to show up with curiosity, empathy, and an interest to get to the bottom of problems.
That’s the shift the medical community needs to better understand and treat our neurodivergent communities.
Photo credit: nambitomo, Getty Images
Katya Siddall-Cipolla (she/they) is the founder and CEO of Hopper Health, a digital-first personalized primary care platform for neurodivergent adults. Prior to founding Hopper, Katya was vice president of product development and innovation at BCBS Kansas City. Katya began her career as a combat medic in the US Army.
