Spending Time With A Family In Crisis

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In a recent article, Joseph Goldstein, who covers public health for the New York Times Metro desk, provides a close-up look at the Benedict family: 13-year-old Sabrina, who was given a diagnosis of autism and a rare genetic disorder. , and her parents Jeremy and Crystol. Mr. Goldstein spent months following the family. In his article, he provides an intimate portrait of the fear and helplessness that Jeremy and Crystol feel when they can’t control their daughter’s aggressive behavior, which can lead to her harming herself and others, and their journey to try to help her. He described that reporting in an interview. That conversation appears edited below.

Where did this reporting begin for you?

I started covering health care about two years ago after a long time covering cops and criminal justice in New York. My start on health care coincided with the pandemic and writing a lot about Covid-19. I wanted to find other topics to write about, too, and I’d been talking with doctors and nurses at hospitals around New York City. I kept hearing about autistic teenagers who were being boarded in the emergency room for long periods of time. This is not a new problem. There’s been fantastic journalism on how there are many autistic teenagers who end up languishing in hospitals. In some cases, there isn’t anywhere else for them to go. What I thought would be compelling was if I could find a family that would let me be present and observe what this crisis looked like.

So how did you find the Benedicts?

I began to reach out to advocates and groups in disability rights. I was hoping to find a family that would allow me to visit them and spend time with them and understand what they were going through, as they were going through it. Somebody who knew the Benedicts and was trying to help them reach out to them. That person passed along the Benedicts’ number saying, “They’re expecting your call.”

I remember calling Jeremy and explaining that I was hoping that they consider letting me visit a couple of times, and that they stay in touch and fill me in on their effort to find Sabrina help. It was a lot I was asking of them, especially because they were in the middle of it.

What did you explain to the family about your role as a journalist?

What I explained was that I wanted to spend some time with a family in this particular crisis and help readers understand what they’re going through.

One of the things I found striking is that a lot of government agencies are aware of what a child is going through. When a child is in the ER with autism for weeks or months on end, a lot of caseworkers and agencies are involved social services, the local education department. A lot of adults are aware of the situation, and everybody understands that there’s a family in crisis, but there’s not a lot of action. In some ways, this felt very different from that cliché, “slipped through the cracks.” On some of these conference calls to discuss a person’s case, there might be a dozen or two dozen people from social service providers or government agencies. And yet families go through this long ordeal.

What did you owe Sabrina as a reporting subject, a teenager diagnosed with autism?

There is the reporting piece of this, and trying to be sensitive and not add to her or her parents’ difficulties, and the writing piece of this. I can say that writing this, I wanted to show areas of growth. Sabrina’s struggles and meltdowns occupy a lot of the day and loom large in her life. And I didn’t want to minimize that, because what she’s going through is exceptionally difficult. I also didn’t want that to be the only aspect of her that was captured. I tried to show that she still had good moments and happy moments. And I wanted to show just how hard she worked to try to stay on course throughout the day, and how, despite all the meltdowns, that she in some ways was becoming more resilient and adaptive. I wanted to capture that her parents are often proud of her and that she was proud of a lot of things she’s managed to do. I tried to write about her with sensitivity and empathy.

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