‘Rules’ For The World
The Newbery Honor-winning author signed the book — about a girl facing the challenges of having a younger brother with autism — recently, during a weeklong trip to the former Soviet republic, where she was hosted by the U.S. State Department.
Few have made the trip from the United States, much less Maine, Lord said, but one Belarusian woman remembered the Cold War-era visit by Maine-born child diplomat Samantha Smith — a connection that Lord said sparked memories from a different time in the region’s history.
Lord was invited to participate in the International Minsk Book Fair and to tour libraries around the country on the heels of her book’s translation into its 10th language: Russian.
For Lord, the trip was not so much about her writing, but about meeting parents in Belarus who share with her the experience of raising a child with autism, which she said spans language barriers.
“It’s a universal experience I think — that you have a child and you love them and something challenging happens to them. No matter what kind of challenge that is — as a parent, that’s huge,” Lord said. “It felt very familiar in Belarus when they would talk to me about their children, the kinds of things they were concerned about and the joys they had with their children.”
Lord said she was surprised by familiar sights in Belarusian cities formed about 1,000 years ago.
At a circus in Minsk, surrounded by a city founded in the 11th century, Lord said she was among people and families she would have recognized in the U.S.
“It was somewhere very different and very similar at the same time,” Lord said.
But that thought came in retrospect. Just months ago, traveling to Minsk was not anywhere on Lord’s radar. Then the phone rang.
Lord was in the garden of her Brunswick home when her husband surprised her with an announcement that someone from the State Department was on the phone, asking for her.
“My heart just leaped because you don’t usually get calls from the government,” Lord said. “You think you’ve done something wrong.”
The announcement was quite the opposite. The State Department had bought 500 copies of her novel and was asking her to join U.S. diplomats at the book fair in Minsk and for a series of other speaking engagements around the country.
Of all the destinations her mind could travel to after hearing that news, Lord’s thoughts stayed right at home, with her son.
“It’s hard for me to take an entire week and go do something like that because I have a son with autism and routine is very important to kids with autism,” Lord said. “But in the end, it just felt too important not to go.”
In Belarus and elsewhere, Lord said, the rights of those with disabilities is becoming part of the focus of U.S. diplomatic efforts.
“I love that of all the things the U. S. State Department could be trying to promote in Belarus, the rights of people with disabilities is one of them and I wanted to support that as well,” Lord said.
Generally, Lord said, the trip gave her a new appreciation for the legal protections — namely, the Americans With Disabilities Act of 1990 — that the U.S. provides for people with disabilities, which she said do not exist in Belarus.
“Whether in Belarus or here, you start where you are. And then you take the next step,” Lord said. “We, certainly, have taken many more steps that they are just beginning to take now, but we still have steps to take, too.”
Following a library talk, Lord said that one mother broke into tears describing her 4-year-old son’s autism and her fear that there would be nobody to care for him if she became unable to do so. The woman asked Lord what would happen in America, to Lord’s son.
“I said the state would take care of him and her eyes filled with tears because she said ‘that’s not the way it is here,’” Lord said.
A big part of that is not having legal protections for parents and those with disabilities to turn to, Lord said.
“They don’t have the laws to back them up when they go and say, ‘ This is what my child needs,’” Lord said. “If you don’t have those laws in place, then you don’t have somewhere to turn when you’ve heard someone’s answer of ‘no’ and then can take it to the next step. There didn’t seem to be the next step. If somebody said ‘no,’ then that was it.”
Lord said it is not uncommon for parents in Belarus to receive advice to institutionalize their children, but the parents she met had decided against that. Those parents, Lord said, are beginning to find more support despite persisting limits on rights to free speech, assembly and religion.
“During Soviet times, they weren’t allowed to do things like that and this is new for them,” Lord said. “ It was mostly the younger parents who came to my talks because I think they are the ones who have the bravery to try and make things different.”
Throughout the more rural areas of the country — which Lord said reminded her of Maine — the Internet is becoming more of a resource for parents to find information on autism and support for their loved ones.
Despite the differences in treatment options for autism in Belarus, Lord said that the emotional challenges parents face are the same.
“The worries and fears they had for (their children) were very similar,” Lord said.
In the U.S., too, Lord said there is still progress to be made to understand autism — to lose what she called fear of saying the wrong thing.
“What happens when you have a child with autism is that many times you feel invisible because the rest of the world doesn’t really know what to do, or they are so scared that they’ll do the wrong thing that they don’t look at you, they don’t speak to you, they don’t smile at your child ever,” Lord said. “We get so worried about saying the wrong thing that we do or say nothing, and that’s worse than saying the wrong thing.”
That fear, Lord said, can make it harder for a person to open up to someone with autism. She hopes that her now six- year- old novel “ Rules” — which has sold more than 1 million copies — gives people a starting point to break that fear.
“When we don’t understand something, then we’re afraid of it,” Lord said, “and people aren’t afraid of those characters — that’s a big help.”
Lord said many of those fears come in response to social norms. Difficulty reading social cues is part of an autism diagnosis, Lord said.
“If you didn’t struggle with that,” Lord said, “you wouldn’t fit the diagnosis of autism.”
In Lord’s book, the protagonist, Catherine, has a younger brother with autism for whom she establishes a book of rules — social norms he should follow.
The translated title of the Russian edition of her novel is a nonsense amalgamation of two of those rules. It reads: “Rules: Don’t take your pants off in the aquarium.”
The title is not what she expected, but Lord said it fills the function of the title: to pique interest and make a person open the book.
“On that level it’s very successful,” Lord said.
That’s something of how she feels about social norms, too.
The motions a person with autism might make “are just self- calming things,” Lord said. Those motions might be unusual, but they serve the same purpose as tapping a finger or shaking a foot.
“When you really analyze ( social norms), you think, ‘well, why does that make any sense?’ I might move my foot, whereas I’m not doing this,” Lord said, shaking her open palms at shoulder height. “But that’s because I’ve been socially conditioned to know that you’re not going to notice that but will notice this.”
As a starting point for interacting with a person with autism, Lord said, people should consider age.
“If (talking to) a 15-year-old, think, ‘How would I respond to a regular 15-year-old who doesn’t have autism?’ and start there,” Lord said. “And if you have to back up because the person doesn’t understand you or it’s just not the appropriate interaction for that person, then you back up.”
The trip to Minsk was Lord’s first to a foreign country where her book has been translated.
“As an author, you don’t imagine what could happen when the book is out in the world and to see what has happened out there has been surreal and marvelous,” Lord said.
Professionally, Lord said the success left her grappling for what to do next.
“Because I achieved everything I ever wanted with this one, it’s hard to find a reason why you keep doing it, and that takes a little while,” Lord said. “But those are all of the adult concerns.”
As the book is published in new countries, Lord receives letters from children all over the world who have read the novel.
“When a kid sends you the letter saying that ‘I’ve read your book 10 times and I have a brother with autism’ and ‘I am Catherine,’ those things mean just as much as the shiny stickers,” Lord said, referring to awards the book has received, “because you know that for that kid you are one of the authors that they will look back on as the important books in their childhood.”
Lord said she holds close the books that were important to her as a child.
“To think that I have written the book that will be that for that child, there’s nothing that touches that — no shiny sticker, not even a trip to Minsk,” Lord said. “It’s those moments when you really feel like you did something important in the world.”