For the Love of Rachel
Growing up with a sister on the autism spectrum, Emily Hotez, PhD, frequently took notice of the ways her sibling’s life experience differed from her own. One area in which the contrast was stark was in their interactions with doctors. “Watching Rachel interact with the health care system,” Dr. Hotez says, “was like watching a square peg try to fit in a round hole.” A developmental-psychologist researcher, Dr. Hotez is on the leadership team of the Autism Intervention Research Network on Physical Health, a UCLA-led national network that promotes the physical health and well-being of autistic individuals. She spoke with author Tom Fields-Meyer, whose memoir Following Ezra: What One Father Learned About Gumby, Otters, Autism, and Love from His Extraordinary Son was a finalist for the National Jewish Book Award, about her work to help educate medical students and practicing physicians to improve their interactions with marginalized groups, including those with intellectual and developmental disabilities (known as IDDs).
Your work focused on the IDD population is pioneering. What led you to it?
Dr. Emily Hotez: My first research experience as an undergraduate was interviewing the parents of adolescents to understand how they worked together to parent their children. It became readily apparent to me that there are a lot of overlaps among marginalized groups. People with intellectual and developmental disabilities, like my sister, have a lot of the same struggles as other marginalized groups who experience health disparities. I was drawn to this work because I learned that designing and implementing research studies that are aligned with the priorities, needs and experiences of the populations they seek to serve can have an important impact on health policy and practice — particularly for people like Rachel and those in other marginalized groups who have historically been excluded from the research process.
You’ve written about how you were struck by your sister’s challenging health care experiences. In what circumstances do you see that?
Dr. Hotez: One example of this is routine dental appointments. Her anxiety manifests in incessant inquiries about when a procedure will be over. That’s something that most of us think, but we don’t say out loud. Often in such situations, the patient will be referred to a specialist who has some expertise in working with IDD populations. But why does she need to see a dentist with IDD expertise? And how many dentists with self-proclaimed IDD expertise even exist? This practice of referring to specialists with this kind of expertise results in lots of handoffs and referrals across the health care system, and it creates fragmented care and defers the actual treatment that the person needs. Rachel is not alone in having these challenges. I’ve witnessed countless health care providers give up when routine procedures cannot be implemented by the book rather than try to offer accommodations. Research has shown that many practitioners have a lot of trouble offering accommodations consistent with the ADA [Americans with Disabilities Act], such as longer appointment times, or changing the clinic environment, or using communication strategies that are accessible to everyone, like integrating verbal and visual information when they are communicating with patients. That’s why Rachel and so many others like her struggle in health care interactions.
Why are doctors, for the most part, so unprepared to interact with patients with IDDs?
Dr. Hotez: Much of it has to do with stigma. When people hear the word “stigma,” they might imagine an autistic child being bullied on the playground or an adult with a learning disability being discriminated against in the workplace. But stigma isn’t always overt or malicious. We all have implicit biases or preconceptions about people with certain conditions, identities or characteristics. Many harmful biases originate well before doctors become doctors. Stigma and bias originate in childhood, sometimes as young as 9 years old. Children are less likely to want to socialize with children with IDDs. This leads them to distance themselves. And this distance amplifies over the course of a lifetime. When we become adults, we often have very little contact with people with IDDs because we’ve internalized this lifelong stigma that has led us to distance ourselves from them. By the time students get to medical school, many of them have never interacted with someone with IDDs. And medical education is like drinking from a firehose; there are so many priorities and competing interests. Students have vast swaths of information to cover, and IDD issues simply are not prioritized. So, new doctors leave medical school with the same biases that they had about people with IDDs when they entered. That combination of bias and lack of training and education tends to perpetuate the stigma.
And it is doctors carrying that stigma around with them that leads to those disparities in care?
Dr. Hotez: Physicians often presume that patients with IDDs will not understand something, so they communicate exclusively with the parent or caregiver. If they’re not speaking directly to their patient, the physician is not getting a sense of the patient’s specific needs, experiences and priorities. It also prevents the patient from feeling comfortable in initiating conversations about specific concerns, which can be detrimental for health. Physicians may also gloss over important treatment details, presuming they’re too complicated for the patient to understand. Then patients can have challenges following through with treatment recommendations because they simply don’t know what they need to do. A more subtle problem is when physicians attribute a patient’s health concerns solely to the disability. That is often at the expense of making a concerted effort to investigate and treat the patient’s concerns. That can result in unaddressed health conditions.
Your research shows that in reaction to that phenomenon, patients often conceal their disabilities.
Dr. Hotez: We’ve learned a lot about camouflaging. People with IDDs often go into a doctor’s office expecting that they’re going to have to fend off various biases or preconceptions about themselves. Autistic individuals report overcompensating by making eye contact, trying to suppress repetitive behaviors that may help them cope with sensory challenges and by other behavioral adjustments that might hide their autistic traits from the world. This is problematic, and research shows that camouflaging leads to a lot of detrimental mental and physical health outcomes: distress, poor sense of well-being, low self-esteem, heightened anxiety, depression — even suicidality. It can also delay diagnosis. So, it is important for health care providers to consider their office cultures and health care environments so that people with IDDs don’t come to their clinics with the expectation that they are going to experience stigma, bias or discrimination.
How has the COVID-19 pandemic exacerbated these problems?
Dr. Hotez: People with IDDs were disproportionately more likely to contract COVID and die from COVID than the general population. This was among the issues that arose during the pandemic that put a magnifying glass to the health disparities that people with IDDs, among other marginalized populations, face. COVID fragmented services, dismantled support systems and disrupted routines, exacerbating already-existing disparities in health care. I initially turned my attention to the concept of stigma because my colleagues and I were concerned when people with IDDs were largely excluded from the initial COVID-19 vaccination priority guidelines. We knew this is a population that is disproportionately likely to experience a host of negative health outcomes — both before and during the pandemic. So, why were they excluded? Digging a little further, it became clear that policymakers simply didn’t have the data to support including people with IDDs in the priority guidelines. That is a result of a vicious cycle of stigmatization that involves lack of research of this population, lack of inclusion, and lack of focused policy and practice, all of which perpetuates ongoing health care disparities.
How, then, are you trying to address these problems in your work?
Dr. Hotez: There are a number of things going on here, at UCLA. In the school of medicine, there is the Disability Curriculum Initiative. It’s run by a group of students who are extremely committed to improving medical education around disability and stigma. They have been working over the past couple of years to create programming that can be integrated into the medical school curriculum. Many of these students were heavily involved in creating a set of disabilityfocused workshops as part of the medical school’s orientation program for incoming first-year students. The fact that it is student-driven makes it scalable and will ensure that it can fit in with a lot of the competing priorities that medical students have. There also is work being done that was spurred by concerns voiced by the American College of Preventive Medicine about COVID outcomes for minority groups across the board. They asked physician-led practices to propose initiatives to improve health outcomes for these populations during the pandemic. At UCLA, we have focused our attention on the IDD and LGBTQ+ communities across two clinics — the Santa Monica Gender Health Clinic and the UC-Leadership Education in Neurodiversity Program clinic — to implement initiatives to improve data tracking and the resources available to these patients.
What suggestions do you have to help people with IDDs and their families navigate the health care system?
Dr. Hotez: The advice traditionally has been to work on cultivating self-advocacy skills — making sure that they are equipped with the knowledge and the skills to overcome the many barriers that they’re going to encounter in the health care system. Self-advocacy is an extremely important set of skills and capacities to foster. But the onus cannot simply be on the patient or the patient’s family. There need to be bidirectional efforts, both to promote self-advocacy and to ensure that environmental supports are in place and that systemic barriers are dismantled so that interactions within the health care setting are positive, benefit patients and promote their health. It doesn’t have to be complicated or costly. There are many small things that can be done with few or no resources to make the patient’s experience much more positive. For example, my sister recently had a dentist appointment. In the office, they played rap music for her the whole time she was there, because that’s what she likes. And she was comfortable — or as comfortable as anyone can be at the dentist. That was something that was easy for the dentist and staff to do, and it didn’t require any training on their part. But for my sister, it made the environment that much more welcoming and comfortable, and this time her appointment went very well.