Whenever I’ve interviewed a researcher specialized in studying autism and other neurodevelopmental disorders, most of them recommend that I continue my interview series with Dr. Grace Baranek, a globally renowned professional in sensory characteristics and occupational therapy in children with autism spectrum disorder. She has co-authored more than 100 peer-reviewed articles in several prestigious journals, including Autism Research and Autism. Her cutting-edge research doesn’t end with autism as she analyzes and researches the mechanisms and effects behind social issues and access to services. Our discussion interested me deeply as I found myself asking additional questions.

Q. How did you become interested in Autism research?

A. My interests in autism go way back. My undergraduate degree was in occupational therapy and I did my masters and doctoral work in psychology. I became interested in autism research during undergrad at the University of Illinois. At the time, I did some volunteer work at developmental preschools where there were children with a variety of different developmental conditions but I really became interested in autism through readings I was doing in some of my courses. From there, I began to do clinical work in occupational therapy with children with autism. One of my first jobs was in Chicago working for a developmental institute that provided both multidisciplinary diagnostic evaluations, focused mainly with children on the spectrum, and specialized intervention programs. I really fell in love with the population I worked with. I got to know the children and their families and it made me think a lot about how autism develops and how it affects people’s lives. This all led me to do the research in graduate school and learn more about what needed to be done in the field.

Q. What exactly does someone do if they have a degree in occupational therapy?

A. So, we have a division at USC for occupational science, which is the academic discipline that supports the practice of occupational therapy. Occupational science studies people’s everyday lives - how they orchestrate their everyday activities and how those activities give people meaning and purpose. Social interaction and participation are a big part of that because that’s what gives us meaning and joy. When we think of people with disabilities, including autism, sometimes those daily life patterns are different from those who don’t have those conditions. Occupational therapists will work with people to either help develop or rehabilitate areas that may be impacting them when doing those everyday activities. For young kids, those everyday activities, or occupations, include playing, taking care of yourself, being able to self-regulate, or interact with your peers. Occupational therapists will work in various pediatric settings, such as early intervention or systems to create intervention strategies to support independence and develop important skills for daily life. Occupational therapists also often work in other settings with individuals of various ages who have had strokes, chronic diseases, or mental health problems. We’ve done a lot of work with homelessness and addiction too. We can analyze people’s daily activities within their unique environments to find strategies that support them in engaging in healthier habits and optimizing social participation. 

Q. How has your research or areas of autism research changed over the years?

A. My research has definitely changed a lot over the years. Although, when you’re in an academic setting, and you’re on a tenure track, it is important to kind of have a through line that is to have a program of research that connects from the beginning to the end. I do think that there is a story to my research that is pretty consistent. But, things have changed a lot. Technology has changed a lot. We’re able to ask some of the same questions that we were asking before, but we’re able to measure them in more sophisticated ways now, with measures that are also more sophisticated. More precisely, I don’t do genetics research but I think that’s another area where there has been a lot of growth. I think there are also a lot of changes in developmental research methods and in statistical approaches and modeling. I think that has helped us with how sensitive and specific our measures can be and how useful they can be for example in early screening and detection. However, some things haven’t changed. I am still doing the research for the same reasons that I was in the beginning. I set out to do something that was not only interesting and that I was passionate about, but because I came from a therapy background where you want to do something that has an impact on the world in some meaningful way and to help make a child’s life better. 

Q. Your research lately has turned to early detection, 9-15 months. What have you found are biomarkers for early detection?

A. Our work has primarily focused on behavioral risk markers for early detection. We look at behavioral signs that show up early in development and figure out ways to track those signs over time and intervene earlier to give infants the most optimal chances for success. Some of those early signs that a lot of doctors and researchers have looked for have arisen in the second year of life and mostly focus on communication-related markers. If you look at the literature released in the past decade, it’s filled with a lot of great research on joint attention, which is the ability to share attention around a common object of interest, and language development. One of the things we are finding with our work, which has focused a lot on sensory development, is that some of the first differences that we see are around sensory processing and how infants may be reacting to sensory information from their environment. It’s really important because if there are differences in the way that infants are reacting to that sensory information, whether it be sounds or light, then it is going to change your perception on how the world is and it will change other people’s perceptions around the infant because they will start to treat them differently depending on how they perceive their reactions. We have to observe when these first behavioral signs are occurring and think of ways in which we can work with caregivers to recognize those signals early so that we can support them.

Q. With 1 in 44 children diagnosed with autism, is there enough government funded support for research?

A. No, there is definitely not. The government has to support research in a lot of different areas and a lot of other social services. So everybody understands there’s always limits to what we can do at any given point in time. We’re always looking for more funding that is available to do the work that needs to be done. If you look at how many grants are even submitted to the federal government, many of them are stellar grants, and they’re only funding maybe the top 10%. That means that 90% of the grants are not getting funded and some of those are from stellar teams. It is important to go and look for funding from other private sources and organizations. Usually people go to the federal government for the bigger and multi-million dollar kind of projects. Usually, with those projects, the biggest costs are usually personnel costs and technology. 

Q. What led you to create the First Years Inventory and what diagnostic criteria and techniques did you take into consideration when creating the Sensory Experiences Questionnaire?

A. The First Years Inventory (FYI) was created by a multidisciplinary team which included several colleagues from UNC; I had been there for twenty years before moving to California. I worked on this with Steve Reznick, Betsy Crais, and Linda Watson. We did pretty intensive reviews of the literature out at that time and had combined clinical experiences from the multidisciplinary perspective. We had been doing a lot of studies, starting with my dissertation work, where we were analyzing and coding family home videos back when VHS recording was a thing. The four of us would observe the behaviors that the infants would show 9-12 months of age with the goal of collecting normative data. We use the FYI primarily as a level one autism screening tool, meaning it’s a general population screening tool that is meant to detect risk, or signs in infants who may have an elevated likelihood for autism. For the FYI study, we got parents' names from birth registries and then we sent this screening tool to families when their babies were from 6-16 months old. We’ve been following those babies; some of them are close to 9-10 years old now. We started with around 7,000 babies. By the time they were three years old, we were able to collect data and measures around autism features and developmental outcomes of different kinds. We see different sensory trajectories for kids with autism compared to kids who develop neurotypically.

Q. What current projects are you working on at the insp!re lab?

A. We are actually currently finishing an intervention study. I’ve been conducting this study with Dr. Linda Watson at UNC, who is a speech pathologist. We used the FYI to identify children who may have elevated risk for autism around 11-16 months of age. Then, we recruited those families into an intervention study and we developed a new intervention called Parents and Infants Engaged, or PIE. The idea around the intervention was really to test two conditions because we had this idea that early in development, you not only need to be focusing on prelinguistic communication but also sensory reactivity and regulation issues. So, we developed an intervention where half of the families were coached, where the parents were coached to recognize sensory hyper- or hypo- reactivity signals from their babies and how they are regulating that, and the other half were coached on preverbal communication signals. After six weeks, the two groups swapped. We are teaching them to recognize those signals and stay responsive to those signals to maximize dyadic engagement during different activities, such as feeding or playtime. We are currently analyzing the data of that study. We had some pretty cool findings. We saw a lot of growth both in terms of the parent’s levels of responsiveness over time and also in the children’s development over time. The group that had parents coached on sensory conditions first seemed to have an advantage over the other group. That was really interesting because we were thinking about how a lot of families already know about language and communication because it is taught so much through books or even just the internet but a lot of people don’t know about the sensory issues so that was something new that the parents had to learn. They had to consider several things - what was their child feeling and what were they experiencing that made them feel that way. 

Q. What do you have to say to girls in STEM?

A. Do it! It’s an awesome career. I would encourage anyone who has an interest in science to pursue it. It’s always been a passion of mine and there’s so many scientific fields out there. I’m seeing more and more girls going into STEM programs and schools that are really supporting girls.