Our latest Editors’ Roundtable looks at “Autistic and Seeking a Place in an Adult World.” Amy Harmon's story follows Justin Canha, an autistic man in his early 20s, and the many people trying to help him learn to live independently. A reporter for the New York Times, Harmon has won two Pulitzer Prizes: one in 2008 for her series “The DNA Age” and another as part of a team in 2001 for the series How Race is Lived in America.” Her chronicle of a clinical trial, “Target Cancer,’’ received several honors in 2011, including the annual journalism award given by the National Academies of Science. In this email interview, she discusses new approaches to integrating multimedia, “skipping the spinach” and keeping the reader reading.
How did you come to focus on Justin, the autistic young man at the center of your story?
In some other narrative stories I’ve done, I’ve spent a bunch of time at the outset finding the right person or situation to be the vehicle for the topic I am trying to illuminate. With this one, I knew almost from the start that Justin was going to be my protagonist – because I had been following him for years.
I met Justin in early 2005, when I attended the opening of the first exhibit he was included in at the Ricco/Maresca gallery in Chelsea. (There is a brief mention of the exhibit in the story). I was on maternity leave at the time, but the gallery, conveniently, was a block from my apartment, and I was thinking of pursuing a story about autistic artists when I went back to work.
Instead, I got absorbed in other projects. But as you may have gathered from the story, Justin’s mother, Maria Teresa Canha, is not one to give up on a potential opportunity for her son. She stayed in touch with me, and over the years, I went to the Outsider Art Fair several times to see Justin, and to a party the Canhas gave for people who had helped with his art career. I have an email from January 2008, one of many, where Maria Teresa suggests that “this would be the perfect time’’ to write a story. And I kept saying, “I’m interested, but I’m working on other things right now.’’ During all this time, the angle was autism and art, but I was also hearing about Justin growing up, and the anxieties the Canhas were having about what would happen to him after high school. Finally, in early 2010, when I was surfacing from another narrative project, I realized that there was a different, more pressing story here.
I talked to enough experts and other parents of autistic teens to verify that Justin was far from alone in nearing the end of high school with higher hopes for living out his life in his community than was the case for previous generations. And I had been interested in him to begin with partly because Justin fell in roughly the middle of the autism spectrum – he wasn’t going to be dismissed as so “high-functioning’’ as to have little relevance to the challenges facing people with autism’s more serious impairments. It’s hard to find any one individual to represent a whole group, but Justin’s story was typical enough that I felt confident it would reflect the experience of a lot of families.
When did you learn about his dream of having his own apartment? Did you know right away that this hope would provide a kind of theme for the piece?
Justin’s mother told me about that when we spoke on the phone in early 2010, and I was initially quite suspicious of it. It seemed unrealistic, and it felt like it might have been sort of manufactured, that it might be his parents’ dream, or his teacher’s dream, not his. And since this story was about Justin finding his own voice, having more autonomy over his own life, it was really important to me that I would not be buying into a message that someone else thought was the politically correct or expedient thing for Justin to want.
But once I started hanging around, I heard Justin say it so often, and so spontaneously, that I realized it didn’t matter if the seed of the idea had been planted by someone else. I mean, how do teenagers who don’t have autism come to have the notion that they will live on their own? It’s just built in to what the culture expects of them. I especially liked that, like any other adolescent, Justin wanted to escape the chores and responsibilities set out by his parents. In some ways, I felt like his struggle for independence was universal, it was just magnified and made more difficult by his condition. I hoped that emphasizing things like his apartment dream, readers would identify.
Did you have a strategy for balancing the background you wanted to provide on federal and local assistance to autistic kids with the forward motion of the story?
If by “strategy’’ you mean researching and writing long sections about government and educational policies for helping individuals with autism and then totally scrapping them in the name of moving the story forward, then yes.
This is actually something I learned at a Nieman Narrative conference a few years ago, I think it was from Tom French or Jacqui Banaszynski. Narrative writers are always trying to figure out how to sprinkle in the “spinach’’ of a story, and one of those guys said, just skip it. Skip the spinach. And the point is, if your story draws people in and makes them care about your characters and keep reading to the end, they’re going to grasp the policy issue or societal question you’re trying to highlight anyway. If you show them, you don’t have to tell them. Of course I didn’t internalize that lesson well enough to spare myself the pain of writing through those sections, but I think that serves a purpose too. Because when you realize how boring what you just wrote is, you are compelled to figure out scenes and dialogue that will, um, show the spinach, rather than spelling it out.
The chapter of the story that starts with Kate, Justin’s teacher, taking her teaching assistants to a sheltered workshop was the one where I originally had a whole bunch of policy paragraphs. I really wanted people to understand that public schools are obligated by federal law to provide transition programs for students with disabilities, and that it’s not that much more expensive to provide programs like Justin’s, which appear to actually pay off in terms of job placement, but that very few schools do. And that there’s no accountability – no one makes schools track what works and what doesn’t and so taxpayers can’t even decide whether it’s worth spending the extra money, and don’t know if the money they ARE spending is being wasted.
See, aren’t you bored? A few expository sentences remain in that chapter, but I did my best to trash them because the risk was too great. With a story like this, if people stop reading in the middle, the impact is lost. It’s not like a normal newspaper or even magazine story where you could get the gist in the first half, or at least learn something along the way. With this, you really need to get to the end. And it’s long. So I would sacrifice a lot to get you to keep reading.
One of our editors noted the multimedia elements as a striking part of the story. These elements were folded in via highlighted links that indicated whether it was a picture or video. Was there a lot of advance coordination of the written and visual parts of the story?
I’m so glad you asked about the “quick links,” as we (provisionally) call them! Those little icons, and the short videos and pictures that open up just above the paragraph you are reading when you click them, were invented for this story, and yes, there was a LOT of advance coordination. They were conceived during a screening of the 11-minute video that my colleagues Kassie Bracken and Patrick Farrell (with reporting help from me) produced to go along with the story. My editors had read a few early drafts of the story when we all sat down to watch a cut of the video, and I think we all realized that no matter how hard I tried to convey what Justin was like, nothing could communicate it as well as seeing and hearing him. But there was no guarantee that readers of the story would also watch the video, and besides, the video did not tell the broader story that I was telling, as best I could, with mere words.
So Glenn Kramon, the masthead editor who handles enterprise projects, told the multimedia people we needed to somehow integrate snippets of video into the story. When we saw what they came up with, it seemed so obvious, I couldn’t believe that we hadn’t had this tool before. In addition to giving you a more visceral feel for the people and pictures I was describing, I felt like it gave a kind of authority to my words. I could say something like, “Justin loved Disney and often warbled ‘When You Wish Upon a Star,’ his favorite song.” But if you can then click and hear him sing, and hear him SAY how much he loves Disney, you don’t just have to take my word for it.
As someone who really wanted readers to keep reading to the end (see above) I also love that when you click on the icons, you do not navigate away from the story. You stay right on the page. We did have a lot of discussion about where to place the icons so that clicking on them would not interrupt the flow of the story, and it took awhile to get it right. But eventually I felt like I learned to use them to add a new kind of emphasis to a point or a scene.
You're not just following Justin, you’re following a whole ecosystem of the people that are trying to help him. How did you make decisions about the number of people to develop as characters in the piece?
That was hard. I wanted this to be Justin’s story, so my priority was to show his journey. But his mother, Maria Teresa, and his teacher, Kate Stanton-Paule were also moving from one point to another over the course of the story, and I tried to show their arcs as well. At one point I also had his brother, his father, and his other teacher, the co-director of the transition program, as more fully-developed characters, but it was just way too much. The other “character” in the story is really the community – the various employers and colleagues and store clerks and students who have to decide whether and how to adapt to Justin’s presence in their lives. I tried to show the many-sided nature of that dynamic as well.
What was your main challenge in writing the story?
Keeping readers reading to the end. Sorry if I sound like a broken record, but it’s true. I think it’s true with every story like this that I’ve written. I wanted to build the suspense, to show what Justin and his teachers were up against, so they would want to keep reading. I guess the reason getting to the end is so important is because I wanted the story to work on two levels – I wanted readers to care about Justin as an individual, but I also wanted them to think about the limits of their own tolerance, about how far they, as neighbors and employers and colleagues and taxpayers, are willing to go to make accommodations for people like Justin.
And with Justin’s story, I think there is a sense of hope at the end. He does get a job, not his ideal job, but a job he likes, that he can get to on his own, that pays him real money. He even, almost unexpectedly, makes a friend.
So there is some payoff for reading through all of his trials and tribulations – but there is also the question hanging: What next? What’s in store for Justin in the coming years, and what’s in store for all the other adolescents like Justin, who may not have the benefits he did? And what’s in store for the rest of us, whether we choose to try to integrate them or we don’t?
Those questions could, of course, be raised in a more straightforward article about the general topic of young people with autism nearing adulthood. They could be illustrated with a few anecdotes and quotes showing different people in situations like Justin’s. In fact, originally, since my editors were not enthused about me diving into another long narrative, I had pitched the story as a quick profile of Justin’s efforts to prepare for adulthood.
But partly because other stories intervened, and partly because I could see that following him through to the end of his high school program would make for a much more satisfying story, I was able to persuade them to let me reframe it. And the hope is that if you do read to the end of Justin’s story, you are more emotionally engaged – that you have come to actually care about those questions rather than just understand them.
For more from Harmon on this story, read David Dobbs’ interview with her over at The Open Notebook.
How did you come to focus on Justin, the autistic young man at the center of your story?In some other narrative stories I’ve done, I’ve spent a bunch of time at the outset finding the right person or situation to be the vehicle for the topic I am trying to illuminate. With this one, I knew almost from the start that Justin was going to be my protagonist – because I had been following him for years.
I met Justin in early 2005, when I attended the opening of the first exhibit he was included in at the Ricco/Maresca gallery in Chelsea. (There is a brief mention of the exhibit in the story). I was on maternity leave at the time, but the gallery, conveniently, was a block from my apartment, and I was thinking of pursuing a story about autistic artists when I went back to work.
Instead, I got absorbed in other projects. But as you may have gathered from the story, Justin’s mother, Maria Teresa Canha, is not one to give up on a potential opportunity for her son. She stayed in touch with me, and over the years, I went to the Outsider Art Fair several times to see Justin, and to a party the Canhas gave for people who had helped with his art career. I have an email from January 2008, one of many, where Maria Teresa suggests that “this would be the perfect time’’ to write a story. And I kept saying, “I’m interested, but I’m working on other things right now.’’ During all this time, the angle was autism and art, but I was also hearing about Justin growing up, and the anxieties the Canhas were having about what would happen to him after high school. Finally, in early 2010, when I was surfacing from another narrative project, I realized that there was a different, more pressing story here.
I talked to enough experts and other parents of autistic teens to verify that Justin was far from alone in nearing the end of high school with higher hopes for living out his life in his community than was the case for previous generations. And I had been interested in him to begin with partly because Justin fell in roughly the middle of the autism spectrum – he wasn’t going to be dismissed as so “high-functioning’’ as to have little relevance to the challenges facing people with autism’s more serious impairments. It’s hard to find any one individual to represent a whole group, but Justin’s story was typical enough that I felt confident it would reflect the experience of a lot of families.
When did you learn about his dream of having his own apartment? Did you know right away that this hope would provide a kind of theme for the piece?
Justin’s mother told me about that when we spoke on the phone in early 2010, and I was initially quite suspicious of it. It seemed unrealistic, and it felt like it might have been sort of manufactured, that it might be his parents’ dream, or his teacher’s dream, not his. And since this story was about Justin finding his own voice, having more autonomy over his own life, it was really important to me that I would not be buying into a message that someone else thought was the politically correct or expedient thing for Justin to want.
But once I started hanging around, I heard Justin say it so often, and so spontaneously, that I realized it didn’t matter if the seed of the idea had been planted by someone else. I mean, how do teenagers who don’t have autism come to have the notion that they will live on their own? It’s just built in to what the culture expects of them. I especially liked that, like any other adolescent, Justin wanted to escape the chores and responsibilities set out by his parents. In some ways, I felt like his struggle for independence was universal, it was just magnified and made more difficult by his condition. I hoped that emphasizing things like his apartment dream, readers would identify.
Did you have a strategy for balancing the background you wanted to provide on federal and local assistance to autistic kids with the forward motion of the story?
If by “strategy’’ you mean researching and writing long sections about government and educational policies for helping individuals with autism and then totally scrapping them in the name of moving the story forward, then yes.
This is actually something I learned at a Nieman Narrative conference a few years ago, I think it was from Tom French or Jacqui Banaszynski. Narrative writers are always trying to figure out how to sprinkle in the “spinach’’ of a story, and one of those guys said, just skip it. Skip the spinach. And the point is, if your story draws people in and makes them care about your characters and keep reading to the end, they’re going to grasp the policy issue or societal question you’re trying to highlight anyway. If you show them, you don’t have to tell them. Of course I didn’t internalize that lesson well enough to spare myself the pain of writing through those sections, but I think that serves a purpose too. Because when you realize how boring what you just wrote is, you are compelled to figure out scenes and dialogue that will, um, show the spinach, rather than spelling it out.
The chapter of the story that starts with Kate, Justin’s teacher, taking her teaching assistants to a sheltered workshop was the one where I originally had a whole bunch of policy paragraphs. I really wanted people to understand that public schools are obligated by federal law to provide transition programs for students with disabilities, and that it’s not that much more expensive to provide programs like Justin’s, which appear to actually pay off in terms of job placement, but that very few schools do. And that there’s no accountability – no one makes schools track what works and what doesn’t and so taxpayers can’t even decide whether it’s worth spending the extra money, and don’t know if the money they ARE spending is being wasted.
See, aren’t you bored? A few expository sentences remain in that chapter, but I did my best to trash them because the risk was too great. With a story like this, if people stop reading in the middle, the impact is lost. It’s not like a normal newspaper or even magazine story where you could get the gist in the first half, or at least learn something along the way. With this, you really need to get to the end. And it’s long. So I would sacrifice a lot to get you to keep reading.
One of our editors noted the multimedia elements as a striking part of the story. These elements were folded in via highlighted links that indicated whether it was a picture or video. Was there a lot of advance coordination of the written and visual parts of the story?
I’m so glad you asked about the “quick links,” as we (provisionally) call them! Those little icons, and the short videos and pictures that open up just above the paragraph you are reading when you click them, were invented for this story, and yes, there was a LOT of advance coordination. They were conceived during a screening of the 11-minute video that my colleagues Kassie Bracken and Patrick Farrell (with reporting help from me) produced to go along with the story. My editors had read a few early drafts of the story when we all sat down to watch a cut of the video, and I think we all realized that no matter how hard I tried to convey what Justin was like, nothing could communicate it as well as seeing and hearing him. But there was no guarantee that readers of the story would also watch the video, and besides, the video did not tell the broader story that I was telling, as best I could, with mere words.
So Glenn Kramon, the masthead editor who handles enterprise projects, told the multimedia people we needed to somehow integrate snippets of video into the story. When we saw what they came up with, it seemed so obvious, I couldn’t believe that we hadn’t had this tool before. In addition to giving you a more visceral feel for the people and pictures I was describing, I felt like it gave a kind of authority to my words. I could say something like, “Justin loved Disney and often warbled ‘When You Wish Upon a Star,’ his favorite song.” But if you can then click and hear him sing, and hear him SAY how much he loves Disney, you don’t just have to take my word for it.
As someone who really wanted readers to keep reading to the end (see above) I also love that when you click on the icons, you do not navigate away from the story. You stay right on the page. We did have a lot of discussion about where to place the icons so that clicking on them would not interrupt the flow of the story, and it took awhile to get it right. But eventually I felt like I learned to use them to add a new kind of emphasis to a point or a scene.
You're not just following Justin, you’re following a whole ecosystem of the people that are trying to help him. How did you make decisions about the number of people to develop as characters in the piece?
That was hard. I wanted this to be Justin’s story, so my priority was to show his journey. But his mother, Maria Teresa, and his teacher, Kate Stanton-Paule were also moving from one point to another over the course of the story, and I tried to show their arcs as well. At one point I also had his brother, his father, and his other teacher, the co-director of the transition program, as more fully-developed characters, but it was just way too much. The other “character” in the story is really the community – the various employers and colleagues and store clerks and students who have to decide whether and how to adapt to Justin’s presence in their lives. I tried to show the many-sided nature of that dynamic as well.
What was your main challenge in writing the story?
Keeping readers reading to the end. Sorry if I sound like a broken record, but it’s true. I think it’s true with every story like this that I’ve written. I wanted to build the suspense, to show what Justin and his teachers were up against, so they would want to keep reading. I guess the reason getting to the end is so important is because I wanted the story to work on two levels – I wanted readers to care about Justin as an individual, but I also wanted them to think about the limits of their own tolerance, about how far they, as neighbors and employers and colleagues and taxpayers, are willing to go to make accommodations for people like Justin.
And with Justin’s story, I think there is a sense of hope at the end. He does get a job, not his ideal job, but a job he likes, that he can get to on his own, that pays him real money. He even, almost unexpectedly, makes a friend.
So there is some payoff for reading through all of his trials and tribulations – but there is also the question hanging: What next? What’s in store for Justin in the coming years, and what’s in store for all the other adolescents like Justin, who may not have the benefits he did? And what’s in store for the rest of us, whether we choose to try to integrate them or we don’t?
Those questions could, of course, be raised in a more straightforward article about the general topic of young people with autism nearing adulthood. They could be illustrated with a few anecdotes and quotes showing different people in situations like Justin’s. In fact, originally, since my editors were not enthused about me diving into another long narrative, I had pitched the story as a quick profile of Justin’s efforts to prepare for adulthood.
But partly because other stories intervened, and partly because I could see that following him through to the end of his high school program would make for a much more satisfying story, I was able to persuade them to let me reframe it. And the hope is that if you do read to the end of Justin’s story, you are more emotionally engaged – that you have come to actually care about those questions rather than just understand them.
For more from Harmon on this story, read David Dobbs’ interview with her over at The Open Notebook.
