7

Media and Public Perceptions and Misperceptions of Children with Disabilities

In the final panel of the workshop, five presenters examined a topic that has often been discussed by the Forum on Promoting Children’s Cognitive, Affective, and Behavioral Health but has not been explicitly addressed in one of its workshops: the perceptions and misperceptions of children with disabilities that are created by the media. A panel of people in the communication sciences, journalism, and the media looked at how to frame issues and how to construct messages so that people will hear them, understand them, and act on them. As moderator Donald Wertlieb of the American Orthopsychiatric Association and Tufts University observed, the notion of disability has been changing in recent decades from the property of an individual to a property of the social, emotional, and physical environment. The media have helped and can continue to help shape skills, knowledge, and attitudes that reflect this new understanding of disability.

OVERCOMING THE STIGMA OF MENTAL ILLNESS

Science journalist Victoria Costello, who also spoke earlier in the workshop (see Chapter 2), focused on the theme of stigma, based on her book that discusses the various disorders that her family has experienced over three generations (Costello, 2012). During her book tour, she said, “it was striking how powerful it was for people, for other parents especially, to hear someone talking about their story.” Personal stories help break down the stigma that surrounds these conditions, said Costello, because “they can relate to you as a person, as a parent, and then that helps them imagine that they can own up to what’s going on in their households.”

Costello worked on the board of the Mental Health Association of San Francisco. Some of the money generated by California’s 1 percent tax on millionaires was spent on research into stigma. For instance, a study by Corrigan (2001), using 150 community college students as subjects, found that education had some impact on changing attitudes, one-on-one contact had more impact, and protests had no impact. Another study at King’s College (Mehta, 2015) also found that education had a small but statistically significant effect, while one-on-one and Internet contact had a moderate impact. In that respect, said Costello, Internet contact proved to be “more intimate than, say, watching a television show about people.”

Costello also pointed to the excellent care that she and her son received at a community mental health center. “These psychiatrists knew exactly what you were saying. They were the best people we dealt with,” she said. Sometimes expertise is more readily available in that kind of setting than with clinicians covered by private insurance, where it can be difficult to get appointments and guarantee coverage.

MAKING AUTISM VISIBLE

Steve Silberman, a former science writer for Wired and the author of the book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, pointed to the rise of the autism advocacy movement as one way of understanding public perceptions of autism and other conditions (Silberman, 2015). In January 1962, a small group of parents in London began meeting in the kitchen of Helen Allison to form a new organization that they initially called just “The Project.” They were told by other parents that the chances of getting the organization off the ground were slim. Their children’s disability, they were told, was too rare and obscure to justify launching a new organization. The few psychologists and pediatricians who had heard of autism felt confident that they would get through their entire careers without seeing a single case. Furthermore, said Silberman, the prevailing theory at the time among psychiatrists and medical professionals was that parents themselves were to blame for causing this condition in their children by being cold and overly ambitious. Women who had college degrees, instead of being stay-at-home mothers, were particularly suspect, he recounted. But the group persisted, and the Society of Autistic Children, now known as the National Autistic Society, was born.

The group decided that working with the media was part of their core mission. Their children’s condition was considered so rare that little scientific research had been done on it, and most lay people were unaware of the desperate need of these children and their families for support and services. In fact, said Silberman, throughout the 1960s and 1970s, autistic children

were often sent to institutions, and their parents were told to remove their pictures from the family albums and never speak of them again.

A couple of months before the official launch of the society, Allison appeared on a popular BBC program called “Women’s Hour” to talk about her son Joe. “The mailroom at the BBC filled up with letters, which was one of the first signs that autism was not as rare as clinicians had been insisting for more than 20 years,” Silberman said. That fall a feature article on autism appeared in the London newspaper The Evening News. It bore the unfortunate headline “Children in Chains,” Silberman reported, but it alerted the many other parents of autistic children that they were not alone.

A counterpart organization launched in the United States in 1965. An early organizer was Ruth Christ Sullivan, who Silberman said was a gifted community organizer who knew how to advocate for public policies that would benefit all children. At one point, Sullivan saw a script for a movie about an intellectually disabled man with unusual skills, which became the movie Rain Man. “In retrospect, Rain Man looked like a cliché,” said Silberman. “But at the time it was a breakthrough to see an autistic person on the screen, and it was seen all over the world.” As Silberman pointed out later in the workshop, the best approach is often to encapsulate a complex systems problem within a story. “Human interest stories are in general the most powerful vehicle for expressing complex systems issues, because then you don’t have to argue theoretically that you need to make complex systems change. You can show this is the problem, and then you open it out to the larger systems issues,” he said.

Another important event was the broadening of diagnostic criteria in the Diagnostic and Statistical Manual of Mental Disorders, which had the effect of more people receiving a diagnosis. At the same time, clinical instruments for screening for autism became available, and the mistaken idea that vaccines cause autism was circulated in the media. “This perfect storm of things happened that created the spike in diagnoses that started in the late 1990s,” said Silberman. Autism organizations began speaking of an epidemic, which had the effect of terrifying parents. “Many studies of disabilities have shown that parental stress and suffering depends on parents’ subjective views of their children’s disability,” said Silberman. “Children can have very serious impairments, but if their parents have a more positive view of the condition [and] have faith in their children’s potential, they suffer less and make better decisions about their children’s future.” Yet the traditional way of gaining policy makers’ attention and raising money has been to prey on parental fears of an epidemic. Silberman said, “The problem is that fear is an excellent way to raise money, and it’s an excellent way to motivate policy makers, but it’s not an excellent way to raise children.”

Silberman pointed out another issue, which is that the criteria for autism were restricted to children for many years and only became available

to adults in the 1990s. The prototypical image of someone with autism is a child, and the vast majority of autism organizations all over the world almost exclusively use pictures of children on their Websites. “The problem with that is that it tends to obscure the fact that autism is a lifelong disability that requires lifelong support and accommodations,” said Silberman. “If we frame a condition like autism as exclusively a problem of children, then we create a larger problem in society. In that sense, autistic adults have been rendered doubly invisible.”

CONVEYING ISSUES THROUGH STORIES

In 2015, Susan Lanzoni, a historian of science and medicine, wrote an article about her experiences caring for her 11-year-old son, who has type 1 diabetes (Lanzoni, 2015). He was attending an overnight school outing in western Massachusetts to learn about farming, and Lanzoni had to attend the outing as well to test his blood sugar at various intervals, assess his activity levels, count his carbohydrates before meals, set his infusion pump, and monitor him at night. “Yet I was also trying to be invisible,” she recounted, “because what 11-year-old wants his mom coming by and chasing after him.”

Part of the article’s intention was to publicize type 1 diabetes, an autoimmune disease that accounts for about 5 percent of diabetes cases. Children with the disease are totally dependent on injected insulin or insulin delivered through an insulin pump. Most people know much less about type 1 diabetes, Lanzoni said, noting “when you hear about diabetes in the press, it’s about type 2, and type 1 gets lost.”

In writing the piece, she thought a lot about media representations and how to portray a child with a chronic condition. She wrote it as a vignette of a particular situation that occurs every day; according to Lanzoni, “this brought it to life within the context of a story.” But even as a single vignette, the story brought together questions of family, schools, and communities. Sometimes parents have to work with school nurses or other staff members to train them in how to manage a condition in a communal setting. In other cases, schools have rejected children who need special attention, saying that they do not have the staff to do special monitoring or care. “We certainly have had camps that have said, ‘Sorry, we just can’t take you,’” she said.

She also mentioned her son’s preferences. At first she was reluctant to name him in her writing, but he said that he wanted his name in the article. “I was pleasantly surprised, but it made me think a lot about his own perceptions of himself,” said Lanzoni. “He’s at an age where he wants to be just like the other kids, so he tries to hide his machinations with the pump as much as possible.” At the same time, as he moves into adolescence, he is going to be taking on more of his own care and presenting himself to

others. “That’s something else to think about, with kids having their own voices and being able to tell their own stories in their own ways,” she said.

APPEALING TO EMOTION AT THE AD COUNCIL

The mission of the Ad Council is to identify a select number of significant public issues and stimulate action on those issues through communications programs that make a measureable difference in society, said Tony Foleno, senior vice president for research at the Ad Council. Since the 1950s, it has done work on forest fires, polio, pollution, discrimination, drunk driving, crime, seat belts, AIDS, domestic violence, recycling, texting and driving, bullying, and, since 2008, autism.

Foleno said that he has been at the Ad Council for 14 years, and his job now is unrecognizable from what it was when he started. Partly the changes are due to the proliferation of media, including online media. Partly they are due to what he called “message clutter” caused by the number of different organizations that are vying for the public’s attention. And partly they are due to an explosion of data with which to analyze and plan media campaigns.

But certain principles remain the same, he stated. The first is that appealing solely to logic never works. “The most effective campaigns . . . tell a story and tell it in an emotional, compelling way,” he said. All of the Ad Council’s successful campaigns have an emotional component, he said. “It could be fear, but more likely it’s going to be joy or celebration or some sort of inspiration.”

A second principle is that the message needs to be simple and clear. “The public doesn’t care about the complexities,” he said. “They want to know what they can do about it right now.” One of his most difficult tasks, said Foleno, is to persuade scientists, environmentalists, public health professionals, and other professionals to narrow down their message to a single clear compelling idea.

Foleno pointed to several approaches that work. The first is to do as much research as possible on a topic. “The more homework you do in the beginning, the more literature that you can refer to, the more primary research you can do,” the better, he said. Listening to the people you are trying to reach is another component of research, he said. “We need to understand and have a sense of empathy, whoever that audience might be, however different they might be from us.”

Another route to success is to strive for measurable objectives. During the kickoff meetings, Foleno said he asks, “A year from now, what do we want to be talking about?” Objectives give a campaign the momentum it will need.

People who receive a message need to feel a personal connection to the content, Foleno observed. “It should feel like, ‘Oh, that’s for me.’” Mes-

sages also need to travel through a broad and deep media mix, he said, including social media and on-the-ground resources.

Foleno played three video clips that the Ad Council had prepared for Autism Speaks. Directed toward parents, they emphasize early interventions for young children. The first and oldest ad spot was accompanied by photographs of the singer Toni Braxton (Ad Council, 2008):

The second and more recent spot was accompanied by video of a boy playing:

The third and most recent spot was accompanied by an animation of a boy:

This campaign “has been a homerun for the Ad Council,” said Foleno. About 4.5 million visitors have come to the Autism Speaks Website for learning the early signs of autism, “which is a huge number.” Almost half of the targeted parents have seen the campaign or recognized it. Even more important, the percentage of parents who have talked to a health care professional about the possibility of autism has doubled from 8 to 16 percent.

Foleno acknowledged the power of language in messages. For example, the phrase “learning disability” places the disability with the learner rather than with the interaction between the learner and the environment. Using language that acknowledges an issue rather than a problem allows more empathy for the people affected by that issue. He said, “Empathy is the key to all of this. It’s not understanding who you’re trying to reach but who you’re trying to help.” The Ad Council’s own thinking has undergone a

progression on this topic, as evidenced by the changes in the three ad spots Foleno showed. Rather than playing on the ominous undertones of parental fear, the most recent spot emphasized the perspective of someone with autism, which is more likely to produce empathy. “As our understanding evolves, so does our creative work,” said Foleno.

These campaigns can be expensive, Foleno acknowledged in response to a question. “There’s a misperception, particularly in government and public health circles, that you could save a lot of money and still be as effective if you just build a Facebook page and tweet a bit. That’s not the case. There’s a reason why major advertisers spend billions of dollars every year in the United States, not just on social and interactive [media] but on broadcast as well,” he said. The Ad Council relies on donated media—each campaign gets about $30 million across media platforms per year in media donations—and is currently near capacity for the campaigns it can produce. “The media community is not set up to do public service; they’re set up to make money, and the competition for time and space is tremendous,” he said. At the same time, he pointed to state and local organizations with limited budgets that have still been quite impactful. “But the fact of the matter is that it does cost quite a bit,” he concluded.

OVERCOMING OBSTACLES TO FUNCTIONING

Emily Willingham’s grandmother, who died the year before the workshop at age 91, lived for 60 years with multiple sclerosis. Whenever she encountered an obstacle in her environment that hampered her need to function, she modified the environment so that she could do what she needed. “She ran a school on her own for about 20 or 30 years,” said Willingham. “There wasn’t a single thing she couldn’t do, because she consistently modified her environment to fit her function. I’ve never forgotten that.”

Willingham is also the mother of three sons, two of whom have special needs. Her oldest son is autistic, and when he was diagnosed in 2004, Willingham adopted the same attitude her grandmother had. “I was going to create an environment for him that would allow him to function and still be who he is. So that’s what we did. He is now at a prep school and won a championship grade-level match in chess last year for the state of California. . . . He continually surprises me, even though I have high expectations of him and always have,” she said.

The environment determines disability, not the person, said Willingham. As a result, people have an obligation to create an environment that is functional for everyone.

As a developmental biologist, university teacher, and freelance writer, Willingham has thought and written about perceptions of disability in the

media, including social media. In the past, people with autism have been characterized as “being toxic, or kidnapped, as monsters, as needing to be institutionalized,” she observed. “The parents of these people have been characterized as refrigerator mothers. . . . Because of the fear that these perceptions have created, there has been an enormous focus on putting money toward a cure, instead of modifying the environment as much as it could be modified for existing people who are autistic.”

Since her son was diagnosed and she became deeply involved in the autism community, Willingham has noticed a distinct change in attitudes toward autism. Not coincidentally, this also has been the period when social media has arisen. “We have seen Facebook, we have seen Twitter, we have seen Tumblr,” she said. “It’s not just that it lets parents connect. It lets autistic people connect as well, in ways that demonstrate that they have capacities that people had not previously realized they have. It gave them an outlet, it gave them a tool. It modified their environment to show their function. I think that’s critical.”

The language with which people talk and write about autism also has changed, she said. Style guides no longer let writers use the word “suffer” or “afflicted” in talking about people with autism. Stories about autism include quotations not just from parents but from people with autism as well. “Those people have voices as well, and they get to use them, they get to speak for themselves,” Willingham stated.

Willingham urged people to stop defining high functioning and low functioning as the ability to speak. Speaking “is not reflective of cognition in any way, and never has been,” she said. Someone may need support in a particular area, but that does not mean that they are low functioning. “I’ve had clinicians ask me, in front of my son, ‘So is he really high functioning?’ And I have always turned to him and said, ‘Well, baby, are you?’ so that he can answer that question for himself,” she said.

Social perceptions shape individual perceptions, she noted, and the destigmatization of autism has led not just to awareness but to acceptance. She said, “Once we clear the way, we clear the stigma, we clear the blame, we say these people are people who have voices that they can use if you give them the right tools, these are people who can read what others write about them. Once we recognize that, . . . we don’t have to dismiss their positives and their potential.”

IDENTIFYING WITH A DISABILITY

An interesting discussion arose among the panel about the extent to which people acknowledge and thereby identify with their disabilities. As Silberman pointed out, “some people cannot hide their disabilities. But the process of deciding to be who you are is very powerful and important.”

When one person acknowledges that he or she is clinically depressed, others feel empowered to do so as well, he pointed out. Similarly, journalists who have autism spectrum disorder (ASD) have become more willing to say so in their writing.

In the past 25 years, autistic identity and culture have developed, he said. This “allows young children and adolescents to have visible role models, which is very important and which they never had in previous generations.” In addition, an entire ecosystem has grown up of autism Websites, blogs, and other venues where autistic people can talk with each other. The development of an identity has been accompanied by considerable tension and conflict—for example, the extent to which a “cure” for autism should be emphasized—but, he said, “for the most part it has been a tremendously encouraging thing, particularly for young autistic people. They not only get the sense that they have the chance to maximize their potential, [but] they have mentors within the autistic community.” In his book, Silberman writes about engineers who realized as adults that they are autistic and that the people they had been mentoring were probably young autistic people. “Intertribal mentoring is a really powerful thing, and that’s what’s happening,” he said.

This issue comes up in the language used to refer to people with disabilities and complex health and educational needs. For example, Lanzoni objected to the use of the word “diabetic,” because it defines a person by a medical condition, reducing a person with a complex identity to a narrow disease category. “There are a multitude of voices even within what you might call a category of disability or a spectrum,” she said. “The more we can get out there, it seems to me, the better able we’re going to be to hear that diversity.” Her son tries not to draw attention to himself, but as he has approached adolescence he has been more willing to “come out, in a sense, and say, ‘This is a part of who I am.’” It is an identity too complex to be captured by the word “diabetic.”

Silberman pointed to a different aspect of language, which is that many people with ASD want to reclaim the word “autism” as part of their identity. He has a tendency to use the adjective “autistic” rather than the person-first “person with autism.” The usage is analogous to the homosexual community, in which “gay people took back words like ‘queer’ as badges of pride. For many people with autism, the word ‘autistic’ is a badge of pride,” he said.

Similarly, Foleno pointed to the work on addiction done by the Ad Council, where organizations like Alcoholics Anonymous emphasize the need to acknowledge that someone is an alcoholic first and everything else follows. “It’s deliberately reductionist,” Foleno said.

Amy Houtrow of Children’s Hospital of Pittsburgh said, as someone who participates in and has studied the disability rights movement, “per-

son-first language still reminds us in an important way to make sure we’re destigmatizing, and not just labeling.” At the same time, part of destigmatization is the ownership of a condition, she commented.

These differences also appear within particular communities, such as the deaf community. As Willingham pointed out, within disability communities, some people are focused on a cure for a disability, while others are fighting for the right to be the way they are.

Costello added that everyone has to manage his or her own mental health, and mental health does not stay static. Some disorders are more familiar, such as depression or anxiety, but most people are going to have a mental health issue at some point in their lives, she said. “As with other medical illnesses, psychiatric illness is a nearly universal experience.”

Silberman added that most people will be disabled at some point in their lives, with the extent of their disability changing over time. In that respect, the autism rights movement has close ties to the disability rights movement.

Houtrow made the same point about disability. As she explained, “Many of you are wearing eyeglasses. You have visual impairment. If I took your eyeglasses away from you, you would no longer be accommodated. Some of you may not be able to drive a car. Some of you might not be able to read. Some of you might not be able to find your way to the bathroom because your visual impairment is that severe. So there is always going to be an interaction between the person and their environment that creates disability.”

As pointed out by other speakers, disability is universal. “It has affected each and every one of us,” said Houtrow. “Every single one of us has had a cold and has been stuck in bed feeling terrible, not being able to do day-to-day activities. It happens all the time. If we can just own that disability is a part of everyone’s life, it will become less stigmatized.”