Author: nrychik

My time interning at the Center for Autism Research has taught me valuable lessons about social justice work as well as how I can actively be more involved. Before beginning my internship, I thought of social justice and social justice work as being large in scope, however, I have now realized that social justice can simply mean working to accomplish any ends that benefit the community. The term social justice is not exclusive to helping refugees or volunteering for an organization working to end world hunger, it can be on a much smaller scale and much more personal.

 

Thus, at the beginning of my internship, I had some trouble seeing how CAR was directly linked to social justice work. It took some time and experience at the center, but I now understand that every project I assisted with at the Center for Autism Research benefitted the community and therefore was extremely valuable work and falls into the category of social justice.  If I could go back to when I first started my internship and give myself advice, I would let myself know that social justice comes in many different forms. Those forms are not always so apparent but it is important to look at projects and assignments from multiple angles in order to understand how they are currently benefitting or can potentially assist children with autism, their families, and the community.

 

 I would also let myself know that research projects take time and it is important not to rush the process. My supervisor tasked me with watching several videos from the Infant Brain Imaging Study (IBIS). This study looks at infants that are at high risk for autism because they have an older sibling on the spectrum as well as low-risk infants and brings them in at multiple time points for neuroimaging and behavioral assessments. I watched videos of the behavioral assessments and recorded each time that the clinician tried to get the participant’s attention and differentiated between bids that used name calls and other types of bids. This was a long process, however, at the end, I was able to compile the data and actually find trends. When I showed these trends, such as increased number of bids over time and more types of bids used for kids that eventually were diagnosed with autism, to my supervisor, she was so excited. I had gone through the classic research process of collecting data, finding trends, asking questions, and generating hypotheses. Now, we are looking at even more videos of behavioral assessments to collect additional data and to determine whether my hypotheses hold up with a larger sample.

 

I would give this same advice to other people interested in pursuing an internship or a career in autism research as well, that they should take their time and investigate multiple perspectives. I would also advise them to take advantage of the resources around them. This could mean asking other people in the office questions about their daily work or reaching out to other professionals in the field and learning about their career paths. The Children’s Hospital of Philadelphia has this directory that I have found extremely valuable for researching career options and making connections.   

 

I am sad that my time at the Center for Autism Research is coming to a close but I am

grateful for all that I have learned and for the research projects I have had the opportunity to impact!

 

Looking back at the past month spent interning at the Center for Autism Research, I now realize many of the valuable skills I have acquired as well as numerous characteristics I have learned about myself in the workplace.

To start, I have gained more collaborative skills and realized that I work well in a team setting. In the past, I have enjoyed individual projects and assignments, however, at CAR, I have found group efforts to be extremely

valuable. I am able to voice my own opinions and preferences and receive feedback from researchers and fellow interns, and then build on those ideas to produce the best result. For example, the other interns and I have been working on writing a script for the summer screening study discussed in my previous blog post (which you can read here!). This study’s goal is to test how willing families, including those with and without developmental concerns, are to download CAR’s response to name app and enroll in the research project in order to investigate how kids with autism, kids with developmental delays, and typically developing children respond to their individual names. The script will be used when approaching families in the waiting room at CHOP’s primary care family practice as well as when introducing the study and explaining more about the procedure in the doctor’s exam office. I believe the team effort, including my own perspective, has resulted in a product that is the most comprehensive to describe our study and its importance to families.

Throughout my time at CAR, I have also realized how valuable my organizational skills are in the work place. I have always been an extremely organized person with color-coded binders and folders for various subjects in high school and a perfectly arranged closet both at home and in my dorm room. However, now I have been able to take that skill to a new level. I have organized binders full of various medical and clinical assessment forms for participants at CAR and made it so that researchers can readily find the materials that they need. I have even printed out new forms and organized those in the binders as well so that the researchers and clinicians will have them ready to go for future visits with the participants.

Other skills that I have expanded upon include patience and taking the time to delve deeper or to look at a project from a new perspective. At first, it was not clear to me how exactly social justice would fit into my internship. However, as the weeks have gone on and I have taken the time to look at the research in new ways and have asked more questions, I have found numerous social justice niches within CAR. One researcher at CAR is particularly interested in the M-CHAT, an early developmental screening tool, and has compiled a database of a diverse group of children’s scores on this assessment. I have been able to question how health insurance, whether a child is on Medicaid or on private insurance, correlates with these scores. We are still in the process of running statistics but I am excited to see where this research (with my own twist) will lead.

Overall, I have experienced much growth over the past month by acquiring new skills and realizing existing qualities and I am excited to see where the next month will take me.

One of the foremost social justice goals of the Center for Autism Research is to expand the scope of research, and along with it diagnosis and treatment, to classically underrepresented populations. Currently, CAR is working to accomplish this goal through the development and ongoing use of the response to name smartphone application. As discussed in a previous blog post, (which you can read here!) diminished response to name is a hallmark feature of autism. CAR has created this mobile app to record how various children, those with autism, children with developmental delays, and typically developing children, respond to their individual names. The goal of the response to name app is both to understand the differences in response to name in these different populations and to determine if it can be used as an early indicator of autism as well as to incorporate a more diverse participant pool into the research.

Here, change and progress mean taking a different approach to how research is typically conducted. Instead of participants coming into the Center for Autism Research office in Philadelphia, they are able to participate in the research project from home, the supermarket, or any other place that is customary to their everyday lives. This shift in the way the data are collected requires many small and larger steps that I have been able to be a part of throughout my time at CAR.

The first step was developing the app, which I was able to make my mark on several summers ago when I drew out the tutorial for how to use the application. This summer, I have worked on coding some of the pilot videos. I have watched numerous trials and analyzed them for any atypicalities in the way the child’s name was said and for the degree to which the child responded to his or her name.

Currently, several summer interns including myself are part of a new project called the summer screening study that is aiming to recruit more individuals to use the response to name app. We are doing this in order to determine who actually participates in the study and to ensure that the participant pool is in fact demographically and socioeconomically diverse. Later, when a larger study is conducted, researchers will be sure that the application is truly reaching people of diverse backgrounds.

As one of the interns working on this project, we visit a primary care practice at the Children’s Hospital of Philadelphia and recruit patients from the waiting room. We explain the complete study to the families, help them through the consent process, and download the smartphone application with them. This is an exciting and more hands-on way for me to participate in the research process!

I have really enjoyed the process of watching the response to name application study unfold as it attempts to capture a more representative sample. I am excited to see the next steps and where the research and data collected will go as well!

In my Research Methods and Laboratory in Psychology course at Brandeis University this past spring, we spent some time discussing representative sampling and the importance of recruiting a diverse population. This is essential in order to achieve external validity, the extent to which the results of a study can be generalized to other situations or to other people. (If you would like to learn more about representative sampling, click here!)

Representative sampling is often a concern in autism research including at the Center for Autism Research. Many of the families that are able to bring their children in for various assessments and research projects are affluent Caucasian families, and this can potentially confound the data. Since the studies mostly involve these certain groups, researchers cannot know whether the results are generalizable to a larger population or whether they are solely consistent with that particular group.

The Center for Autism Research is aware of this issue and is trying to combat it through various new projects such as the Response to Name app. Diminished response to name is a hallmark feature of autism that can potentially serve as an early indicator of an autism spectrum disorder. Researchers at CAR have developed a mobile smartphone app that prompts a parent or guardian to stand behind their child when the child is engaged in an everyday activity and to call their name. Thus, families don’t need to come into the lab to participate. The app then video records the response and uploads the file to a secure network. Parents also rate whether their child responded to their name.  (More information about the pilot run of the smartphone app can be found here.)

This past week I have been watching the videos (about 30 trials per participant!) and coding them for certain information including whether the name calling bid was typical, if the child was in view of the camera, and if they responded. It has been very interesting for me to observe the different ways that children with autism, children with other developmental disorders, and typically developing children respond to their own names. This phenomenon was not something I thought much about before, but now the distinctions are becoming clear to me and I better understand the importance of studying this trend.

It is the hope of the Center for Autism Research that in the future, the data collected from this app will be used to better understand “response to name” and aid in the early screening and potentially diagnosis of autism spectrum disorder. The use of the mobile app is extremely valuable in the effort to get a wider range of families to participate in research. With the introduction of the app, there is greater accessibility to the study which hopefully will be a step towards more accessibility to diagnoses and treatment for underrepresented groups.