Provide names of other journalists involved.
None
List date(s) this work was published or aired.
“Autistic and Seeking A Place in the World”– Sept 18, 2011, New York Times “Navigating Love and Autism,” — December 26, 2011, New York Times
Provide a brief synopsis of the story or stories, including any significant findings.
The pair of stories chronicle the challenges of the first sizable generation to come of age with a diagnosis of autism. While much has been written about children with autism, little has explored the lives of young adults. This cohort, diagnosed earlier and having benefitted from growing awareness of the neurological condition, is better-equipped than their predecessors to live full and independent lives. But will they succeed? The first, “Autistic and Seeking a Place” follows Justin Canha, 20, a friendless young man who loves cartooning and hopes to find a job in a world whose unspoken social rules constantly trip him up. We watch in suspense during his last years in high school as his teachers and parents enlist community members and potential employers to help him in his quest. The second story takes off where the first leaves off. Many have assumed that individuals with autism spectrum disorders were incapable of, or indifferent to, intimate relationships. But “Navigating Love and Autism” follows a young couple with Asperger syndrome who, like young adults everywhere, yearn for romance. Unable to put themselves in each other’s shoes by picking up on the emotional cues that may be obvious to others, they struggle– and for the time being, somehow manage– to make each other feel loved. The effort to convey autism in its fullest sense in these pieces led to the concept of the pop-up video links sprinkled throughout them online. Pioneered in this series, the links allow Web readers to see and hear autism as well as to read about it, and part of the challenge was to ensure that they deepened rather than distracted from the storytelling. (Try them)! Ultimately, the stories pose questions that loom both for those who are on the autism spectrum and those who are not: will society embrace people whose brains work differently, as it has those in wheelchairs, or with a range of other differences? For people whose disability is intrinsically social, will the social rules so fundamental to everyday interaction be stretched– or are the costs, whether personal, psychological or financial, too high?
Explain types of documents, data or Internet resources used. Were FOI or public records act requests required? How did this affect the work?
No FOI or public records act requests were required. I read dozens of academic journal articles about autism and many about special education. I read dozens of blogs by and about individuals with autism.
Explain types of human sources used.
I spent a over a year reporting the first story, dipping in and out of the lives of Justin Canha, his parents and his teacher, Kate Stanton-Paule. I interviewed over a dozen experts on autism, but the most intensive work was in interviewing Justin and everyone around Justin– at least two dozen of his therapists, teachers, family friends, employers. I also spent a lot of time with Gower Nibley, his first true friend. For the second story, I interviewed several individuals with autism who are in a couple, and many who are not. I spent almost three months with Kirsten Lindsmith and Jack Robison, visiting them in Amherst five times and once on the road, in Philadelphia.
Results:
The results of close-up stories like this are hard to gauge, but on the scale of everyday life, many people with autism and family members wrote– in email, blogs and tweets — to say they made a difference. Perhaps even more importantly, people with no connection to autism wrote to say that the articles made them understand the condition for the first time. The articles were cited on Longread’s”Best of 2011″ list, among other year-end lists. NPR’s “Talk of the Nation” interviewed Jack and Kirsten, calling the story “abeautiful, inspiring, funny, moving, sometimes sad look at love on theautism spectrum.”I was asked to speak about the articles and their “quick links” at journalism classes atColumbia at NYU, a journalism conference at MIT, and to be the keynote speaker at a Boston-based fellowship program for health care journalists. Educators at University of California, Berkeley and elsewhere are using the articles in biology classes and to promote tolerance and understanding.
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 was a correction to the second story that became somewhat famous in its own right. A character from “My Little Pony” was misidentified. You can see the correction and the background on it here: http://jimromenesko.com/2012/01/06/the-story-behind-the-best-nyt-correction-ever/
Advice to other journalists planning a similar story or project.
I conceived of this series because of a demographic trend that was beginning to affect average Americans. Everyone I knew knew someone with autism who was a teenager, or in their early 20’s. The numbers showed a surge in diagnosis in the early 90’s– due largely to better identification of the condition — that has led to a bigger and more self-aware group of young people. I think it’s good to have a solid news trend to justify a deep-dive narrative like the ones I did here. But I think that once you do have that, telling the larger story through an individual– and especially watching that individual change over time, so you can tell a suspenseful tale — can be a powerful way to go, and one we often shy away from because it takes so much time and resources. So my advice in terms of structure is to try for the sweeping narrative. To me, it’s always more emotionally moving– and therefore, more informative, because the story sticks with you. In terms of how to report on people with autism, I wish I had some better advice. But it is basically: be patient. As much as you can, be a fly on the wall. Watch and listen. Just like any story subject, it takes time to get inside their heads. But their brains are so different, and also, in unexpected ways, so similar, to those of other people, that it just takes longer. Also, in terms of weaving the science into a story that is primarily about people — but importantly about science too!– I found two or three experts who were willing to help me and knew from the beginning that I would not quote them. That was an immeasurable help because one of the most important aspects to me was to make sure the story reflected, through my characters, what is currently known about autism, its causes and the therapies that do (or don’t) help.