A Focus on Topics in Neurology, Neuropsychology, and Neuroscience through the lens of Diversity, Equity, and Inclusion
Greetings from the Diversity, Equity and Inclusion Committee of the Department of Neurology. Each month, we will explore a variety of topics with a DEI focus through an interview format that includes a Resident or Fellow and a member of the faculty. We hope to use this format to inform the reader about our programmatic initiatives, successes, concerns and thoughts about unmet needs and plans for progress. Health Equity is a goal many desire but one that cannot be achieved without persistent, informed action. We hope this column will not only inform but help the reader to identify the role they wish to play. Welcome!
Health Disparities in Autism Spectrum Disorder: A Dialogue Assistant Professor of Neuropsychology Dr. Sylvie Goldman and Child Neurology Resident Dr. Juan Duran
JD: This is Autism Awareness Month, so I'm glad for the chance to sit down and talk with you about treating and diagnosing patients with autism spectrum disorder (ASD), as well as to discuss some of the health care disparities that are specific to patients with ASD, which is a subject of great importance to you. For those that may not be familiar with the role of a pediatric neuropsychologist, would you mind giving us a brief overview of your work?
SG: Sure. As a developmental neuropsychologist and a member of the multidisciplinary Child Neurology team here at NewYork-Presbyterian/Columbia University Irving Medical Center (NYP/CUIMC), the main focus of my clinical work is the early, initial diagnosis of ASD. This means that I see children from the age of 12-16 months up to the age of 6, prior to their entry into elementary school. Through extensive neuropsychological testing, my role is to confirm the concerns of the child neurologists that refer to me, and to assess the specific strengths and weaknesses of each individual child, in order to formulate—in collaboration with the parents and child neurologist—the optimal treatment plan for this child.
JD: Over the last year, as it became clear that the pandemic was going to fundamentally change all of our lives, what were you most concerned about, in terms of how this would impact the diagnosis and treatment of children with ASD and their families?
SG: So, our very first concern was that children with ASD, who often receive behavioral therapies and other important support services in school, would not receive these essential services, perhaps for a prolonged period. And that's what happened beginning in March 2020. Suddenly, there was a tremendous void in services created for children with ASD. This was damaging to all children with ASD, but arguably more so for minority children and children of low socioeconomic status, whose parents could not afford time off work to fill this void, or who did not have the resources or means to afford or access alternative therapy solutions. So, beginning in April, we organized a series of night workshops for parents to address this issue and to support them through this difficult period. We became much more active in helping parents navigate the system, taking the time to explain to them how they can continue to receive services while school is closed, who they need to call, what kind of application they need to complete.. We recognized immediately that intensive parent education was important to their success.
JD: In your work, how have you and your colleagues in Child Neurology had to adapt your own practice to the challenges posed by the pandemic?
SG: First, we really had to move very quickly from in-person assessments to remote assessments. As you can imagine, because ASD is a social disorder, ideally you want to be present with the child to observe and assess them. So, we in the field had to retrain and reorient ourselves to an all virtual assessment platform. As a result, we developed a standardized video assessment, sent to the parents with very specific instructions. Obviously, the parents must be willing to participate. But this has proved to be a very, very successful approach. At first, we were not certain of the feasibility of virtual assessment, but our methods have since been validated by other academic institutions, as well, so we feel in a good place to continue meeting the needs of ASD patients, whether by virtual assessment or in person, as we return to in office visits. Virtual assessment is now another important part of our toolbox, and in many cases works well, if not better, for certain families.
JD: I think it's very important that remote assessments are validated and are now employed in diagnosis of patients remotely, particularly because there's such a large degree of clinical variability in ASD diagnosis. Another issue is that disparities, in terms of age, gender, and time to diagnosis persist, particularly among minority children. What are some of the ways that you've taken this into account in your own work, particularly with the transition to remote assessment?
SG: First of all, I'm actually delighted to use remote assessment because it's opening up the door to a more diverse set of families, including those that could not otherwise have taken an entire day off, twice, to spend several hours in my office. Now, we can do all this remotely, and we have great staff to help make it as easy and efficient as possible for parents.
And, it's very important for me to see the child in their own environment, so that's another aspect of remote assessment that's been extraordinary valuable: it has helped us to see more children, from a more diverse set of families, and to see them in their own environment, which has been invaluable to my work on the early diagnosis of ASD.
Now, I must say that issues of race, age, and gender disparities in autism are extraordinarily tricky and require careful and thoughtful evaluation. Again, autism is not a disease; it's a syndrome, which means that only clinicians who have the expertise to properly assess young children for ASD should make this diagnosis. There is no blood test. There is no MRI. There is no EEG…diagnosticians might see something on these tests but nothing that speaks to the etiology of ASD. Those of us in the field try to standardize our instruments and to be as objective as possible but, ultimately, clinicians are human beings that may hold biases (both implicit and explicit) toward any given child, which can impact their diagnosis.
Broadly speaking, in terms of health disparities in autism, there is gender disparity in the sense that young girls are diagnosed later than boys; There are ethnic disparities in the sense that minorities, Hispanic and black children, are typically misdiagnosed or diagnosed later than their white peers; And there is the problem of socioeconomic status—people who don't have good insurance or can’t afford time off for multiple visits to a diagnostician, often go without a diagnosis during the critical period of early development.
A second layer of disparity in autism is equal access to services, in the sense that having a diagnosis is only the very first step for the family. Right now, during the pandemic, children from low socioeconomic status are disproportionately not receiving the services they need. Schools are closed, therapists are not allowed to come to the home, and many families do not have the resources for private services. So, again, here at Columbia Neurology, we have tried to level the playing field as much as possible by providing all of our families with support and resources to access care in their community, regardless of their financial resources.
JD: Your particular interest is looking at the role that gender plays in the diagnosis of ASD patients. How might bias contribute to the misdiagnosis or missed diagnosis of girls with autism?
SG: Often with girls, clinicians are expecting certain behavior based on gender. So when we see a girl who doesn't talk much, they may think, well, it's a girl. She's shy, she's a bit anxious. They don't think about autism. If it's a boy, they’re more likely to wonder how come he's not talking, you know, what's wrong here? One of the goals of my own work and research is to demonstrate to my fellow clinicians the need to remain very open-minded in order to view each child and any challenges they might present with through a fair and equitable lens. This is work I am very passionate about. The signs are often there or not there provided you view each child from a purely clinical perspective, void of any expectation or bias you might hold based on that child’s gender, race, religion, ethnicity, etc. Again, it’s a tricky subject and one that many clinicians may be unwilling or unable to confront. Here at Columbia, however, we do our best to address these issues head-on, by engaging in open dialogue with ourselves and our colleagues, and educating our trainees to recognize and address healthcare disparities. We pride ourselves on our long history of embracing diversity in all its forms, because we recognize that, in doing so, we improve our work, our lives, and the health of our communities.
JD: What are some ways that we can increase awareness of disparities in ASD, to get more clinicians to take them into account?
SG: This month, as we talk about autism awareness, the moto is ACCEPTANCE. ASD is now a widely recognized disorder, but there is still considerable stigma attached to this diagnosis. Many clinicians remain reluctant to give such a diagnosis to parents, particularly in very young children who might benefit the most from early intervention services. And many parents remain unwilling to accept an ASD diagnosis, particularly among certain races or ethnicities that may be rightfully wary of medical misinformation and discrimination. The only way to move beyond these obstacles is to continue educating and building trust within our local communities, through efforts such as our Annual Autism Fair, which we created for the diverse northern Manhattan community surrounding NYP/CUIMC.
In addition, my colleagues and I actually go into the field, to schools and community centers, to raise awareness not just among children and families with ASD but also to engage and educate community stakeholders, so that ASD families do not stand in isolation in their communities.
This extends to workforce development, as well. We are committed to enhancing the pipeline of trainees from diverse backgrounds into the field, by actively engaging with young people from diverse backgrounds, to let them know that this is work they can do, this is work in which they can make a difference, and that we want them to be part of this exciting field! In this way—a thorough clinical care plan, community engagement, and workforce development—we move from ACCEPTANCE to ACTION!