My Internship

Photo Credit: https://www.hellobc.com/places-to-go/victoria/

Why is PACER Important?

My site is working to increase availability for autism diagnosis and interventions at younger ages. Working under Dr. Rebecca McNally Keehn and her team, I help input the data gathered from site visits to test the effectiveness of Hubs they've created in Indiana. I also shadow the visits.

Our current project is the Early Evaluation Autism Hubs (EE Hubs). This is a statewide project where we partner with pediatricians at different clinics to see if specialists can train them to effectively diagnose children with ASD and related developmental disorders. It also provides families with the information they need to contact First Steps and other early intervention programs.

The work we do at PACER is important because, as noted by the CDC, 1 in 44 children are diagnosed with ASD. However, research at PACER has found that only about 80% of children that have ASD are being accurately diagnosed in Indiana due to there being no medical tests available to diagnose ASD, only obeservational ones. Many of the parents are also struggling to get access to intervention services, especially now due to the pandemic.

To visit PACER's website, click here

Watch this video to learn more!

A Map of our Project

Here you can see all of our current EE Hub sites and the areas they conduct diagnoses for. As you can see, although we have covered most of Indiana there are still areas lacking local hubs. Not all families have access to transportation which is why local hubs are so important.

The Workplace

I work primarily in an office at the IU School of Medicine called the Pediatric and Adolescent Comparative Effectiveness Research

(PACER) Department. I also do site visits at the Riley Children's Hospital. I expected to be very intimated by the people I currently work under but my bosses are very supportive and understanding.

My main roles are:

data entry
making phone calls
answering emails
meetings
making charts
shadowing visits
problem-solving

I spend most of my time at PACER inputting chart data into RedCap. RedCap is a secure survey and data tracking system that only the team has access to. The psychologists that conduct the site visits use several diagnostic tools to evaluate. I help make the charts that are taken to each site that contain the diagnostic tools, consent forms, and flyers for other ASD studies being conducted at Indiana and Purdue University. A more in-depth analysis of each tool can be found below. I also make phone calls to parents to remind them to fill out their post-visit surveys so we can collect data on the services their children are receiving following their diagnosis. I send emails to my coworkers as well as send out follow-up surveys to parents and surveys to different American psychological associations in order to gather data from other states.

In terms of shadowing, I visit the Indianapolis site since many of the others (see map above) are hours away or do their site visits while I am in classes. They plan to set up a live camera with a secure feed so the team can view these visits virtually in the spring semester. I also had the opportunity to spend a day with pediatric neurologist Dr. Christensen on November 19th. I eventually plan to shadow the LEND clinic, a clinic at Riley that spends an entire day with one child doing different developmental and psychological evaluations, and a genetics clinic at Purdue University.

Problem-solving is a constant part of working in a research study, no matter what the area of study is. For our team, especially since going virtual, we have to be creative with how we solve problems when most of the staff isn't in person. For example, the phone at my desk was not connected so my boss Angela and I had to set up a Skype account on my MacBook in order to make the survey calls.

The Environment

I didn't expect to enjoy my job as much as I do. I typically spend my time at the internship data entry in a cubicle and, as I have personally had a dislike for the idea of a desk job since I was young, I didn't think I'd like that type of environment. While the work that I do is not as hands-on yet, it challenges me to come up with quicker and more efficient processes to input and organize the research data. I like that it is at my own pace and flexible. The PACER workplace environment is a good fit for me. I am excited to be a part of a project that is actively working to increase awareness of pediatric autism. I personally don't have as much experience with autism in my own life, so experiencing the lives of those that do has educated me on how much work needs to be done in this field.

DSM-5 Checklist

checks for criteria as defined by the American Psychological Association as being required in order to officially diagnose a child with autism

ADOS-2

Autism Diagnostic Observation Schedule -2 (ADOS-2)

Three Modules

Module 1 - Pre-verbal/Single Word
- used with children who cannot speak full sentences but can speak individual words and make verbal sounds
Module 2 - Phrase Speech
- used with children who can speak full sentences
- this one is more rarely used than the others because children with ASD often struggle with speech
Module T - Toddler Module
- used with children who are also pre-verbal/single word

Mullen Scales of Early Learning

- Measures the following
  - Gross motor - larger, more general movements (e.g. walking)
  - Fine motor - small, exact movements (e.g. picking up a block and placing it atop another one)
  - Visual reception - eye contact
  - Expressive language - the ability to convey messages to others
  - Receptive language - the ability to receive messages from others

Vineland Third Edition

- domains with a * indicate they are not always observable during the visit
  - Communications
    - Receptive - the ability to receive messages from others
    - Expressive - the ability to convey meanings to others
    - Written*
  - Daily Living Skills
    - Personal
    - Domestic* - at home
    - Community* - with others outside the household such as peers or teachers
  - Socialization
    - Interpersonal Relationships
    - Play and Leisure*
    - Coping Skills*
  - Motor Skills
    - Fine - small, exact movements (e.g. picking up a block and placing it atop another one)
    - Gross - larger, more general movements (e.g. walking)

Learning and Skills

Being an intern at PACER has already taught me so much in terms of working in a professional business setting. Where before I felt clueless and intimidated by the idea of working in a research office, I now know that my boss and coworkers are supportive and understanding and always willing to answer questions.

In terms of skills, I have learned a lot about communicating in a professional setting (e.g. phone calls, emails, meetings), proper work attire, and how to use different data entry tools. I have also learned more about the inner workings of the world of medical research. Many of these skills were ones I hoped to learn through the LHSI internship. It has helped bolster my confidence when being in the office.

I look forward to learning more about physician-patient interactions through additional site visits and shadowing. Shadowing Dr. Christensen taught me a lot about the application of medicine and talking with patients when delivering diagnoses. The site visits and clinical visits I have been to thus far have given me a glimpse of how to interact with parents of children dealing with different developmental and neurological disorders. I hope to continue growing that knowledge base.

Thank You!

I appreciate you taking the time to look over my LHSI ePortfolio! Feel free to leave a comment below or email me at vibozi@iu.edu with any questions.

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