Provide names of other journalists involved.
None
List date(s) this work was published or aired.
10-Jun-12
Provide a brief synopsis of the story or stories, including any significant findings.
The story is about an incredible gift – a local couple donating the brain of their autistic 4-year-old son to research, soon after he escaped their apartment and drowned in the closed pool at their complex. The piece follows several strands, including the sense of devastating loss and haunting second-guessing that any parent losing a child goes through. In addition to explaining how the accident happened, the story gives all readers a sense of what it’s like to raise a child with autism, particularly those with severe impairments and those who try to run off any chance they get, a constant worry for their loved ones. Finally, the piece looks at how the boy’s brain will be used for studying autism, the state of research into the disorder and the challenges, as well as the hope, of that work. A sidebar explains more about the mission of the “bank” storing brains for researchers and how readers can make donations, and a chart shows autism rates that had been recently revised upward by the Centers for Disease Control and Prevention.
Explain types of documents, data or Internet resources used. Were FOI or public records act requests required? How did this affect the work?
I read a lot of online material about autism, particularly the study from the Centers for Disease Control and Prevention finding that the rate of the disorder had increased from 1 in 111 American 8-year-old’s to 1 in 88. But other than that, the story was mainly reported the old-fashioned way – hours of interviews, most of them in person.
Explain types of human sources used.
After I got word of the brain donation, I tracked down the home number of the parents and reached the father. Despite the shock of recently losing a child and the agony of ongoing funeral arrangements, he graciously consented to a phone interview for a short news piece in the next day’s paper. But I recognized that there was a larger and more powerful story there, and he also agreed to a more in-depth sit down at their apartment a few days later. He and his wife talked with me for hours, and also showed me the pool, as well as their son’s likely route to it. With their permission, I spoke with one of his teachers. I also interviewed the director of a regional autism support group, as well as a local woman whose autistic son tries to escape and could emphasize with the lost boy’s family. Finally, I interviewed staff at the brain bank. And I visited with the researcher receiving the brain donation, both in the center where she runs studies and provides therapy, and in the lab where she conducts research.
Results:
This story came at a time when the Centers for Disease Control and Prevention released a study finding that the estimated autism rate had risen from 1 in 111 to 1 in 88 – likely due both to increased awareness and prevalence. With public interest in the disorder magnified, I believe my story gave readers a better sense of what the disorder is, the suspected causes of impairment, the challenges families face and the state of research. I also sought to increase awareness of the tissue bank that received the donated brain. But it’s hard to say if the piece led to any more money awarded or raised for autism research and support, or any additional brain donations.
Follow-up (if any). Have you run a correction or clarification on the report or has anyone come forward to challenge its accuracy? If so, please explain.
There were no corrections, but we did find out after deadline that the tissue bank that received the donated brain suffered a catastrophic malfunction and lost many samples. The brain of the boy featured in the story was not harmed and was still viable for research, so I wrote a follow-up story (attached) explaining that.
Advice to other journalists planning a similar story or project.
Don’t be afraid to approach grieving families – they may want to share their story. But do so with a sense of patience, empathy and above all general humanity. Also, and this has been said before, but go the extra mile and talk to as many people as possible. Often teachers don’t want to talk about students that have been lost – especially when there are medical issues involved. But in this case I got the parents’ permission and gave it a shot, and I thought her descriptions of the young boy gave readers a better sense of who he was. Finally, for narrative you really need to visit a place in person and re-trace the steps.