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Taking on a story about autism that no one wanted Date: 10/23/17

Apoorva Mandavilli

By Tara Haelle

Apoorva Mandavilli won First Place in the Consumer/Feature (small) category of the 2016 AHCJ Awards for Excellence in Health Care Journalism. Here, she discusses how she came up with the idea for her story, “How ‘shock therapy’ is saving some children with autism” and how she researched and reported it.

Q: What led you to begin reporting on this story?

Mandavilli: I was at an autism conference in September 2015, and over dinner one night, a researcher began talking about electroconvulsive therapy (ECT). He said that it sometimes works for kids with autism who have catatonia. I had always been fascinated by ECT, but I had never heard of it in conjunction with autism. I was immediately intrigued.

Q: What was the biggest challenge as you got started? How did you overcome this challenge?

Mandavilli: Honestly, the biggest obstacle was just finding time to report. I tried getting one of our reporters to do it, but the topic was too controversial and the numbers of treated kids too small, so no one really wanted to touch it. But I loved the story idea and worked hard to create time to report and write it. I started with an in-person interview with Irving Reti, a psychiatrist and neuroscientist at Johns Hopkins, when I was in Baltimore anyway for another autism conference in May 2016.

That interview sealed the deal for me. I realized it was an amazing story, and when I got back to New York, I started trying to find families I could talk to. I saw Kyle's session in June [Kyle is an adolescent featured in Mandavilli’s story], and continued reporting in small pieces over the next few months. I wrote it in September, and the piece finally ran in October 2016.

Q: Did you encounter any other noteworthy challenges in the midst of reporting that you can discuss, including how (if) you overcame them?

Mandavilli: Purely from a reporter's perspective, it was difficult to write about a protagonist who couldn't speak for himself. It's one thing to have parents and doctors tell you how someone is doing, but it's not the same as being able to ask the person himself how he feels. But the people with autism who receive ECT are nonverbal for the most part, so there was no way around it. Also, ECT is a controversial topic, and the psychiatrists who offer it, especially for kids, are wary of journalists, as are the families. I allude to both in the story. I had to work hard to earn the trust of everyone involved. I also felt the weight of making sure that I bore out their trust and reported the issues fairly. 

Q: How much did you rely on medical studies to do your reporting? How did find the ones you needed?

A: Mandavilli: The studies available for this were mostly case studies, which were enormously helpful. It was like interviewing many doctors and families in a way. I also went down the rabbit hole of trying to understand catatonia, probably way more than I needed to. But overall, this was one of those topics where instead of referring you to papers, everyone refers you to books. I've never read as many books for a feature as for this one.

Q: What advice would you have for other reporters interested in such a story that deals with both real people and medical research?

A: Mandavilli: People who have a condition and their families are often incredibly well-informed about the field. I think their experiences are often relegated to anecdotes, but in fact should carry weight just as experts' comments do. Whenever possible, I also try to spend time with families instead of just talking to them on the phone. In this case, these kids and their families have suffered so much, and it was difficult to watch Kyle hit himself. But I also think it helped me understand their experience much better than just hearing about it from his mother would have. That can get also tricky – the better you get to know a family, the harder you have to work to stay objective. But it's worth it. 

Q: Any other challenges or rewards of reporting the story you want to mention, or anything else you want to mention?

A: Mandavilli: The comments were brutal! I've heard other reporters say they never read comments, but as editor-in-chief, I felt I had no choice than to pay attention to the story's impact. There were many nasty comments from people who had clearly not read the story and were just reacting to the hed and dek. But there were also a few from parents whose kids have been harming themselves, saying they would look into it for their child. That makes it all worthwhile.

Apoorva Mandavilli (@apoorva_nyc) is founding editor and editor-in-chief of SpectrumShe is also adjunct professor of journalism at New York University. You can read her writing here.