Researcher sees autistic son flourish on African trip

By Sarah Logan, Ph.D.

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I can see how my decision seemed careless. Regardless, I approached my family with the announcement. “You want to take him… where?” they asked. I reiterated, “To Africa, to Ghana, for two weeks.” Yes, he has autism. And, he may not be the most social person on the planet. But did that mean there was no place for him in global endeavors, to help him break out of his comfort zone? I thought not. Let me explain.

My son, Austin, was not formally diagnosed until age 3, though we knew development was a bit ‘off’ by his 1st birthday. In kindergarten, we were told he’d likely never be mainstreamed into a typical classroom. A decade later, after countless therapists, medications, teachers, heartbreaks, and victories, I am proud to say that my strange child has evolved from an isolated special student, known for chewing his clothes under his desk, into a quiet and incredible young man.

Back to the Africa story.

In January of 2012, as a student in MUSC’s College of Graduate Studies, Department of Biostatistics, Bioinformatics, and Epidemiology, I had the opportunity to travel to Tanzania as a volunteer for Madaktari Africa with my advisor, Dr. Joyce Nicholas. In rural villages throughout the country, my role was to help establish baseline data for tracking program effectiveness. I worked alongside doctors from various corners of the world who had come together to assist and train Tanzanian medical professionals in basic life-saving procedures with little to no equipment or resources, including electricity and desperately needed medicines.

Returning to life in the States, I was enjoying the amenities of our own modern and safe home one evening when Austin suddenly slammed his laptop closed, complaining the poor Wi-Fi signal was “ruining” his life. In the frame of mind that I was in, I wanted to take him to Africa to show him life and more.

I had plans to go to Ghana, to the rural village of Okurase with Dr. Cynthia Swenson of MUSC as a volunteer for Project Okurase. It would be hot with no air conditioning, no running water, no electricity, no toilets, no cell phones, and no Internet. I knew that I would witness the impoverished, malnourished, and extremely ill while having access to limited safe water or food of my own. So why did I want this for my son, given his limited social and communication skills, and his reliance on routines, and poor ability to cope with transitions and new environments? It could be a risk for him, me, the project, or the villagers.

It seemed right though. From the beginning, when we knew something was atypical, we decided to never stop asking more of our son and to keep encouraging and expecting great things. Despite his disability, we see ability in him to rise up to meet challenges, but not if the limits are never pushed - so the decision was made.

Weeks before the trip, our son started working with his former science teacher, Cindy Renkas from Mason Preparatory School, to develop a language-friendly science curriculum for the children of Okurase. In July of 2012, Austin and I boarded a plane headed for two weeks of the unknown, where he may be looked at as an oddity for his complexion alone, not to mention his autism spectrum disorder.

Austin thrived. The children were enthusiastic with his instruction, encouraging him to expand his social boundaries. As a parent, no words can express the pride in this social accomplishment. In July 2013, with support from MUSC’s Center for Global Health’s Trainee Travel Award, we returned to Okurase, this time with my husband as well. We were greeted with giant smiles and warm hugs, like family. Austin was not simply accepted but embraced literally and figuratively. My son had won over the hearts of the villagers despite his near lack of facial expression and limited social vocabulary. They taught him how to drum and to dance! My husband was astounded with what he saw and was often addressed as “Austin’s Papa,” as I was “Austin’s Mama”.

I have a very fond and vivid memory of making eye contact with one of the dancers during a traditional African ceremony one evening. As they playfully coerced audience members to dance, as Austin was eventually encouraged enough to stand and join the circle of painted faces and straw skirts, a dancer pointed to my son, gave me a ‘mid-air clap’ and pointed back at himself, as if to say, “Look at what I did, look at Austin!” The connection was evident between these two strangers reaching out beyond themselves, as both the dancer and Austin seemed to be enjoying themselves.

Still, there was work, putting my son’s computer talents to use at the Village Health Outreach (VHO) while I managed the logistics of this annual event. In his spare time, Austin had single-handedly written a program to allow on-site electronic data collection using virtually any mobile device on a wireless local network allowing each device to communicate with his main computer. As an epidemiologist, I saw the value in this; to speed the data entry process, increasing the reliability and accuracy while speeding up the data entry process, and allowing more timely reports of the village health status. Here was a teenage boy with autism thriving in a rural African village with the only comfort of the home being his laptop, powered by solar batteries and no Internet doing work that we were all realizing could have global implications for health information systems worldwide.

We are home now and after seeing Austin casually brush aside numerous emails with award nominations or notifications for young scholars in global health or technical work, I am prompted to ask why he doesn’t want to apply for these awards. I didn’t really expect an answer, but as he looked past me, rocking slightly, stuttering just a little, he asked if I remembered the little boy on the hill who would jump up and down and yell ‘Obruni!’ which means ‘white person’ in Twi, every morning.

“Yes,” I said.
“I did it for him.” And that was the only reply.

Sarah Logan, Ph.D. is a graduate of MUSC's College of Graduate Studies, Department of Biostatistics, Bioinformatics, and Epidemiology. She was also an MUSC Center for Global Health student travel grant recipient.