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Rethinking the autism research agenda

As a leading autism researcher, Brian Boyd refocused his own work and used his position in the field to better serve autistic people with intersecting, marginalized identities. 
Portrait of Brian Boyd

For more than 20 years, Brian Boyd, Ph.D., has dedicated his career to ensuring high-quality education and outcomes for a most vulnerable population — children and young adults with significant disabilities, who are often subject to exclusion, isolation, and poor postsecondary outcomes.  

His research has led to effective classroom and home-based interventions for very young children with autism. For autistic individuals who exhibit repetitive, restrictive, and sensory behaviors that interfere with their quality of life, his work has helped them to more fully engage in learning experiences.  

Boyd’s more recent scholarship aims to engage and serve an even more vulnerable and marginalized population — autistic children and youth of color and their families. The goal of this work is to make bold inroads to change diagnostic, service provision, and research processes to reduce systemic barriers in the field of special education.   

Boyd joined the UNC School of Education as the William C. Friday Distinguished Professor in Education in July 2022 and brings an incredibly unique scholarly expertise and scholarly agenda that holds the potential to alter the field of autism research. Through necessary diversity, equity, and inclusion efforts and research that engages community members as key stakeholders, his impact on the field can ultimately improve outcomes for all autistic children and youth.

A field-leading autism researcher

Before joining the School, Boyd served as a professor of Applied Behavioral Science at the University of Kansas, where he also led the Juniper Gardens Children’s Project, a premier research institute known for ground-breaking efforts to improve the care and educational experiences of children over the last half-century.   

Prior to Kansas, Boyd spent nearly a decade as a faculty member in the UNC Department of Allied Health Sciences, earning tenure and holding research appointments at the Frank Porter Graham Child Development Institute and the Carolina Institute for Developmental Disabilities.   

His work has resulted in more than 85 refereed journal articles in top journals across disciplinary fields, including The Lancet, the Journal of Child and Adolescent Psychiatry, Autism, and the Journal of Early Intervention. He has also published seven book chapters and one book, “Handbook of Early Childhood Special Education.”

Boyd serves as PI or Co-PI on four grants — totaling over $20 million — from the National Institute of Health, one from Health Resources and Services Administration, and two from the Institute of Educational Sciences. Previously, 15 of his funded research and development grants garnered approximately $30 million, most from federal agencies, including NIH and IES. These grants have enabled Boyd to run large-scale, randomized control trials of interventions in school districts across North Carolina, Florida, California, and Kansas.   

Driven by curiosity 

Boyd’s entry into the field of autism research was, perhaps like most researchers, driven by curiosity. For Boyd, that entry was also, to some degree, by chance. As a student in a psychology course at the College of William & Mary in the late 1990s, his textbook had just a single paragraph dedicated to autism.   

“We didn’t talk about [autism] the way we do now,” Boyd said. “But there was something about that paragraph … I decided to search online, and what popped up was the Autism Society of North Carolina’s summer camp, Camp Royal.”  

Boyd applied and became a camp counselor during Camp Royal’s very first summer, spending 10 weeks working with autistic people of varying ages and abilities levels.  

“After that experience, I knew what I was going to do for the rest of my life,” he said.    

“People with autism are all so different,” he said. “You may go all the way from people who have a co-occurring intellectual disability — so someone with a very low IQ and perhaps are not speaking — to people who have genius-level IQ and are quite verbal, quite social. It makes research challenging. Everyone is so different, and, yet, they’re all under this label of autism spectrum disorder.”  

That summer experience led to a pre-doctoral internship at UNC-Chapel Hill’s TEACCH Autism Program — which provides core services and unique demonstration programs that meet the clinical, training, and research needs of individuals with autism, their families, and professionals across North Carolina — where he worked with 2-year-olds. At the time, very few 2-year-olds were being diagnosed with autism, Boyd noted. 

“Those early experiences with autistic people and their families led me to where I am and still drive my work today,” he said. “I am still trying to answer some of the research questions that I have from those earliest encounters.”  

Following is a Q&A with Boyd, who talked about where autism research needs to go, where his work is going, and how we can better serve people with autism who have intersectional identities.  

You recently served as director at Juniper Gardens Children’s Project, and you also serve in varying capacities for several field-leading journals. In those roles, you have a unique opportunity to guide research. Where does research focused on autism, developmental disability, and special education need to go right now?  

There are a few areas. I was recently part of an international working group commissioned by The Lancet that produced a report about the future of autism research.  

One area that we recognized in The Lancet, and this is something I had already recognized in my own research, is that there are many underrepresented groups who haven’t been featured in autism research, which raises the question: Well, what do we really know about autism? People of marginalized groups haven’t been involved in our research so what do we know about autistic people of color? Or about autistic people who might speak a different language? Or about autistic people who live in low- and middle-income countries around the world?  

We have to make sure our research is reflective of the autistic population. They’re not just autistic. They have multiple identities. They may be autistic and LGBTQ; I’ve been doing some of that research. We need to really think about those marginalized groups who haven’t been featured in research — to grow our body of research and to ensure we understand as many perspectives as possible and to ensure the interventions we develop are culturally appropriate and relevant. Even the biological research being done, does it make sense in light of marginalized people not being featured in previous studies? There is a big push to make sure the under-researched are included going forward.  

Another area for study is around autism and aging. Autistic people age and grow old, but we don’t know a lot about the aging process of autistic individuals and what it means to grow older with autism or disability. Does it mean you’re at any increased risks for physical or mental health conditions? Is there an earlier mortality associated with it?  

[UNC School of Education faculty member] Kara Hume and I are working together on another area that deserves more attention: autistic adolescents who are at increased risk for co-occurring mental health conditions, particularly anxiety and depression. We need to begin to understand what they are going through and how we can mitigate those co-occurring mental health conditions.   

And then another area involves fundamental questions around interventions. How do we best individualize interventions? For whom do our interventions work best? Under what conditions do our interventions work best? What’s the best developmental window or timing for an intervention? Figuring out the developmental timing of our interventions and which work best for which individuals is something we’re still figuring out because this has important implications for our work.  

Those are some of the areas where the field is trying to move and where we need to go if we want to advance the lives of autistic people.   

More recently, your research has shifted to focus on the intersection of marginalized populations, most notably race, and disability. What led to that shift? And what do you find at that intersection?  

What led to that shift was my interactions with autistic families of color, in particular Black families, and the stories I was hearing from them. They really have no ability to separate their race from their child’s disability, and their child has no ability to separate their race and disability. They are operating at that intersection.   

I was hearing concerns from families about their child having police interactions. They were saying, “He can’t communicate or he engages in odd behavior, and he’s a Black male so what does that mean for his life? How do we navigate that as a Black family of an autistic child?” And I realized no one was talking about those things on the same scale we were talking about other issues in autism. But these issues impact the daily lives and experiences of autistic people of color.   

And again, Black people with autism and their families are certainly underrepresented in research. We also see disparities in terms of timing of diagnosis. Black kids often get misdiagnosed earlier on so it takes sometimes longer to get an autism diagnosis, and we certainly see disparities in access to the kinds of services and quality of services for Black kids.  

I really started to think, “I have a position. I’m at a place in my career and in the field where I can begin to speak to some of those issues,” so I decided to shift a lot of my research to focus specifically on Black families and Black children with autism.  

For me, what I found at that intersection is joy. It’s the happiest I have been with autism research because it really marries my identity as a Black man with the research I do. I’m passionate about this. It’s where I see my career going.  

It’s important to me to help those families have a voice, to amplify their voice. I’ve been talking to a number of Black caregivers, Black parents of autistic children, Black autistic people about their experiences and really trying to think about how we can shape a research agenda.  

I also recently formed a group of Black academics in autism research, and we’re going to have meetings where we talk about how we advance the cause. How do we uplift the Black experience within this field that is predominantly White researchers? We have to give space and voice to those who have been historically voiceless. It’s essential that we start to privilege the voices and experiences of [Black researchers] who haven’t had a voice in this work.  

How do we begin to overcome these kinds of disparities for people of color and for people from underrepresented groups who have autism or some form of disability?  

I think part of overcoming these disparities is beginning to work in partnership with underrepresented communities, to really elevate the issues they are dealing with. We can’t address these disparities without understanding the experiences of all marginalized identities of autistic people. One example: Autistic people who also identify as LGBTQ report poorer physical and mental health outcomes. We could infer that this is because these people live at the intersection of having a disability and being part of two marginalized groups in society. We need to really understand those intersections to help these groups overcome.  

A number of people in our field are moving into participatory research methods, where you’re partnering with stakeholder groups, whether they be autistic individuals or parents of autistic individuals or caregivers of autistic individuals. Those stakeholders or partners almost co-produce research — helping develop the research questions, think about the research methods, and then disseminate those findings back into the community.  

That kind of research takes time because participatory research is about building trust and partnerships, and that’s not easy work. We are already coming from a different space. Even though I’m Black, I’m not Black and autistic, and I don’t have an autistic child. I’m coming from a different space when I talk to a Black parent of an autistic child. I don’t have that same experience. I have to recognize that I’m coming from a different space and from the lens of a researcher at a research-intensive university, like UNC-Chapel Hill.  

Those families have to see me as someone who’s trustworthy and who’s going to pursue research that will be of help to them and reflective of what’s happening in their lives.  

We also have to remember that non-researchers may not always see the value of research because, sometimes, the benefits or the yield from research can take a long time, and they need meaningful, impactful change right now. Understanding that I may not have an answer for them until five or maybe 10 years is a hard thing to understand sometimes. As researchers, to address the disparities, we need to think about how we can do more incremental research that may be more impactful more immediately as we continue our longer-term research agenda. 

Another big reality: Overcoming these disparities is going to take funding because these are larger societal and systemic issues.  

You give talks to behavioral health care providers about implicit bias and structural racism. What’s the response from the participants of those trainings? Are their eyes opened to new ways of thinking?   

I get a biased audience for a number of these talks. It’s usually people who, in general, believe that issues of structural racism and racial biases exist in society. A lot of what I have heard is, “What has taken us so long to talk about these issues within autism?” 

I have also heard, “Oh, I hadn’t thought about that, but now I can better understand the experiences I’ve had with some of the autistic families of color I’ve worked with,” and “Maybe I need to rethink some things as a clinician and think about what they’re dealing with.”  

They realize they need to remind themselves, as clinicians, that their patients aren’t divorced from their identity as a person of color in society. It brings back Brofenbrenner’s ecological systems theory. Children are nested in families, and sometimes clinicians get so focused on the child they forget that child is nested within a larger family, and the family could be dealing with issues of living in poverty, being a single parent, being a person of color in society. These challenges can’t be divorced from the experiences of their child.  

Some participants in these talks really begin to think about how these issues around race and racism are also impacting the outcomes and experiences of autistic children of color. And from the lens of the provider, they begin to think about their own implicit biases or their own naivete about these issues and the decisions they make for marginalized families.  

In general, the response at these talks has been great, and I’m hoping that more people will take up the mantle of doing research around some of these issues to really understand how they’re impacting outcomes. And I hope they continue to help change perspectives, helping attendees rethink and re-frame how they interact with some of their clients.

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