Friday, March 12, 2021

Towards Autism Acceptance: An Interview With Researcher Desi Jones

Non-autistic people harbor assumptions about autistic people, whether they're aware of them or not. And those biases can get in the way of autistic people being included both socially and professionally. We talked with Desi Jones, a Doctoral Student at the University of Texas at Dallas, whose recent paper Effects of autism acceptance training on explicit and implicit biases toward autism examines how autistic acceptance efforts both succeed and fail in addressing stereotypes about autism, and what this means. We also discussed her work on structural racism in autism research, and how institutions can do better by their autism researchers of color—and why that doesn't merely mean recruiting more POC.

Photo courtesy Desi Jones
[image: Desi Jones, a smiling Black woman
with curly shoulder length purple-tinged hair.]
 
TPGA: Can you tell us about your background, and what drew you to autism research?

Desi Jones: I double majored in Neuroscience and Psychology at Wellesley College, a women’s liberal arts school in Massachusetts. Going into college, I was interested in medicine and wanted to be a neurologist. But when I actually got to college, it was a whole different story. I knew that I was interested in the brain, but I felt deeply unhappy with my courses. We were studying birds and crayfish and chemicals in test tubes, but never studying actual people. All of this research is of course important in its own right, it was just a poor fit for me personally. 

It wasn’t until my junior year of college—I sort of panicked about having no plan in place—I ended up doing two research internships during the same semester. The first was in a developmental psychology lab at MIT, studying how children learn about emotions, whereas the second was at Boston Children’s Hospital working with autistic children. I still don’t know what exactly it was about autism research, maybe it’s because I’m neurodivergent myself, but that second internship resonated with me like nothing else had. 

After graduating, I took a job as a research assistant at UNC-Chapel Hill. My main role was on a collaborative grant about inflexible behaviors in autistic children, but I also did a lot of work on eye tracking studies that looked at differences in social attention for autistic girls and boys. All of this really solidified my interest in working with autistic people, so when I applied to PhD programs, I applied exclusively to labs that did this kind of work. 

TPGA: We appreciate your focusing on autism acceptance training rather than normalization training. What form did your autism acceptance training take? 

Jones: The autism acceptance training video that we used was based on an in-person training session for high school students, which was developed by Dr. Grace Iarocci and her colleagues at Simon Fraser University, in consultation with a group of autistic adults. We modified this training by making it more relevant to an adult audience, but we also wanted to make it more accessible to online audiences, so I changed it from an in-person presentation to a pre-recorded video, and convinced my fiancĂ© to provide narration. The training is about 25 minutes long and it features a lot of short clips from autistic adults, information about autistic strengths and support needs, and recommendations on how to be more accepting and understanding of autistic behaviors. 

TPGA: What you mean by explicit and implicit biases towards autism, and why do they matter?

Jones: When we think of prejudices that people have, these can take two shapes. First, there are the more overt forms, where a person is well aware of their own negative attitudes toward a group. They may openly voice these attitudes, or they may make a conscious effort to conceal them to appear more accepting. These are what we refer to as explicit biases. We studied these biases by asking people what they think of autistic people, such as whether they would want to marry an autistic person, or if they believe that autistic people are able to form friendships. We even showed videos of actual autistic people and asked participants to rate their first impressions of these individuals. 

On the other side of things, we have implicit biases, which are automatic associations that individuals make between a group of people and an attribute. For instance, if you ask a person to imagine an engineer, many people would picture a man, while if you asked them to imagine a nurse, many would picture a woman. These biases are based on stereotypes, not facts—after all, we know that female engineers and male nurses exist! Having an implicit bias doesn’t make you a bad person, and everyone experiences these to some degree. 

One way to study implicit biases is by using a task called an implicit association test (IAT), which measures how strongly people associate a group with positive and negative traits. In our study, we used an IAT to look at how strongly non-autistic people associated autism with negative personal attributes (things like dependency, dangerousness, and social awkwardness), and to see if our training reduced these associations.

Explicit and implicit biases are important in different ways. Explicit biases toward autism can manifest as things like bullying, where others may call autistic people hurtful names or physically harm them because of their differences. Implicit biases are more subtle, but they can impact decisions that people make about autistic people. For example, a police officer who holds an implicit belief that autistic people are dangerous or lack control may be more likely to use excessive force when interacting with an autistic person. 

TPGA: Can you explain how systemic barriers have more impact than autism traits do, when it comes to personal and professional success?

Jones: It isn’t necessarily that systemic barriers have more impact than autistic traits, but more that these systemic factors lead us to interpret autistic traits negatively, and this creates barriers for autistic people. My advisor (Dr. Noah Sasson) has done a lot of research about people’s first impressions of autistic adults, and this work shows that non-autistic people make a lot of negative snap judgements about autistic people. This includes social judgements—non-autistic people report a lower desire to hang out with, or even sit next to, autistic individuals. 

This is what creates barriers to personal and professional success. We have people making assumptions about autistic people based on their traits, then choosing to exclude them. Autistic people face this kind of exclusion across their lives. We see it in professional domains, where they are often paid lower wages and employed at lower rates than people with other disabilities. But we also see it in personal life, where non-autistic people are often reluctant to date or befriend autistic people. 

TPGA: You participated in an Autism in Adulthood roundtable on Structural Racism in Autism Research and Practice, in which you emphasized the need for "cultural sensitivity in researchers and clinicians." Can you elaborate on why this is crucial? 

Jones: I’ve talked a lot about how people’s biases about autism can hurt autistic people, but it’s also true that biases about race and ethnicity can negatively impact autistic people of color. For instance, Black caregivers and Black autistic adults have reported that doctors were initially dismissive of their concerns or made incorrect assumptions about them based on race. This is really harmful to autistic people and can prevent them from getting the care and services that they need. By ensuring that doctors’ treatment plans are not impacted by inaccurate and offensive stereotypes about people of color, we can help to improve access to care for these individuals. 

TPGA: You've also made a call for more racial diversity in autism researchers, which, agreed. Why is this needed, and what steps can the research community take to make this happen?

Jones: When we talk about diversity and inclusion, much of the focus is on recruiting and hiring more people from diverse backgrounds. This is absolutely important, but in my opinion, it is even more important to build systems to support these individuals so that they can continue and thrive in the field. This involves creating spaces where people of color can voice their concerns and experiences without pushback or fear of retaliation. 

Another thing to consider is that people of color often volunteer much of their time to mentor students from similar backgrounds and to educate others about race. Institutions should compensate them fairly for their time, and they should consider all of these outreach efforts when making decisions about tenure. I could say so much more about this, and I have a much longer list of recommendations in the paper itself, but I think that the key takeaway is that the field needs to do a better job of supporting the career development of Black, Latinx, and Indigenous researchers who are already here. 

TPGA: What messages from your work do you most want autism organizations to get behind, and boost?

Jones: I want people to understand the importance of autistic representation. The way that we portray autism, whether it’s through autistic characters in film, how we write about autism, or even the research that we conduct—all of these things impact non-autistic people’s beliefs about autism and the way that they treat actual autistic people. 

When I talk about representation, here is what I mean. We all need to do a better job of involving a range of diverse autistic people—diversity encompassing race and gender identity, as well as other groups that are often erased or excluded, such as older adults, and those who are non-speaking or have intellectual disabilities. These individuals need to be better represented in our outward portrayals of autism, but we also need to do a better job of including them as active contributors within our work, our communities, and our lives as a whole. All of this helps to show that autistic people aren’t a monolith, helping to dispel harmful stereotypes about autism and helping to build more inclusive attitudes toward autistic people.