Method

The Autism Society of America, founded by a small group of parents in 1965, is the U.S.'s leading autism-related support organization. As of April 2009, the Autism Society of America listed 170 state and regional chapters on its own website (http://www.autism-society.org). We manually searched the websites of each of those state and regional Autism Society of America chapters to see whether the photographs they placed on their homepages were those of children or adults. Chapters were excluded if (a) the chapter did not have an active website (n = 53) or (b) the chapter's homepage did not include photographs of any age individual (n = 68). Of the remaining 49 Autism Society of America chapters, each photograph on the chapter's homepages was classified as depicting either an autistic child or an adult. Photographs that were recognizable stock photos were excluded from the tally.

Results

A tally of the photographs appearing on the homepages of state and regional chapters of the Autism Society of America is presented in Table 1. Of the 152 photographs, 95% were of children. The bias toward presenting photographs of children, as opposed to adults, was significantly stronger than what would be expected by chance (χ²(1) = 119.9, p < .0001). Indeed, only 8 of the 49 state and regional chapters (16%) included any photographs of autistic adults, and each that did presented only a single photograph, accompanied by, on average, 5 additional photographs of children. Thus, all of the parent-run chapters of the Autism Society of America depict the face of autism as predominantly that of a child.

Method

A computerized search of TaxExemptWorld.com identified 12 tax-exempt, nonprofit autism-related organizations that a) had reported at least $200,0000 in revenue between June 2008 and June 2009; b) maintained a website; and c) were identifiable as national charities (rather than organizations that provided community-specific services to a restricted geographical area or, in one case, an organization that was demonstrably an Internet-based retail outlet). For each of these top 12 autism charities, we examined the language they used on their websites to describe and define autism. In particular, we coded the charities' homepages, their "About Us" pages, their mission statements, their donation entreaties, and their explicit definitions of autism for the terms "child," "children," and "childhood" compared to the terms "adult," "adults," and "adulthood."

Results

As illustrated in Table 2, the majority (9) of the top 12 revenue-generating autism charities used only child-referential discourse to define or describe autism, whereas only the minority (3) of the charities used a combination of child- and adult-referential discourse. In addition to this strong bias toward children in the charities' discourse (χ²(1) = 5.34, p = .02), for the charities that posted pictures on their websites, all the charities that defined or described autism only in child terms posted only child photos, whereas most of the charities that defined or described autism by referencing both children and adults posted photos of both children and adults.

It bears accentuating the fact that the top revenue-generating charity, Autism Speaks, reported a massive income of $69 million, which accounted for over 85% of the revenue raised by all 12 of the top revenue-generating autism charities combined. Within the first years of its existence, Autism Speaks subsumed the Autism Coalition for Research and Education charity, then subsumed the National Alliance for Autism Research charity, and shortly thereafter subsumed the former Cure Autism Now charity. Autism Speaks has morphed into a mega-charity—and their discourse on autism is solely child-oriented. Given their vast resources, there is little doubt that Autism Speaks' inaccurate portrayal of autism as a child-based disability powerfully influences society's infantilizing of autism.

Method

For fictional books, a computerized search, conducted in January 2010 on Amazon.com with the search terms "autism," "autistic," or "asperger" coupled with "fiction" and "-[not]nonfiction," yielded 105 books with an identifiable autistic character. Synopses and reviews were inspected for the characters' age.

For narrative films and television shows, computerized searches were conducted in May 2010 using the Internet Movie Database (IMDb; http://www.imdb.com), Wikipedia (http://en.wikipedia.org/wiki/List_of_fictional_characters_on_the_autism_spectrum), and Fancast (http://www.fancast.com/tags/autism/533/main). Documentary films and reality television shows were excluded, yielding 83 narrative films and television shows with at least one autistic character. Plot summaries were inspected for the characters' age.

Age 18 was considered the boundary between children and adults for all media (fictional books, narrative films, and television shows). In the few cases when both an autistic child (or children) and an autistic adult (or adults) were portrayed or an individual was portrayed from childhood to adulthood (i.e., fictional books: Bellows, 2005; Essinger, 2004; film and television: Bowen et al., 2010), the medium was considered to have portrayed both a child and an adult.

Results

The vast majority, 90%, of the autistic characters portrayed in the 105 fictional books were children, as opposed to adults, revealing a powerfully strong bias toward infantilizing autism that was greater than chance (χ²(1) = 64.0, p < .0001). The narrative films and television programs also demonstrated a strong bias toward infantilizing autism that was greater than chance (χ²(1) = 10.1, p = .002), with 68% of the autistic characters portrayed in the 83 film and television story lines being children.

Method

A Google search of news articles published during the one-month period of April 23, 2010 to May 23, 2010 with search term "autism" identified 787 articles. News articles were excluded if (a) the article did not include the name of the autistic individual (n = 594); (b) the source was a blog not associated with a print, television, or radio news outlet, such as the San Francisco Chronicle (n = 27); or (c) the source was not based in the United States (n = 35). Full articles for the remaining 131 news stories were examined for the age of autistic individuals, with age 18 serving as the boundary between child and adult.

Results

Contemporary U.S. news articles were considerably more likely than chance to feature stories about autistic children than autistic adults (χ²(1) = 41.9, p < .0001). A substantial majority, 79%, of the news articles featured stories about autistic children, thereby promoting and accentuating in the public's eye the infantilization of autism. Moreover, of the news articles that did feature stories about autistic adults, rather than children, a third of those articles that featured autistic adults also mentioned by name the parent of the autistic adult, leading even those stories to treat autistic adults as children.

The Invisible Faces of Autistic Adults

There is no such thing as a "poster adult." The concept has no traction. Adults are not seen as cute or innocent or as beacons of hope for the future. Adults are less easily manipulated and have legal rights regarding the use of their images. In contrast, children are rarely compensated for the use of their images and are unlikely to bring lawsuits for defamation should they find their images endorsing ideals they disparage. Autistic children are further mythologized to lack awareness of their situations and surroundings; indeed, the very idea that they might be embarrassed or offended by being used as pawns in pity-driven fundraising campaigns is often dismissed by the very parents who consider themselves autism "advocates." Children, therefore, present the face of choice for virtually all autism support societies and most autism charities.

Undoubtedly, in some cases, photos of children are chosen due to familiarity and convenience rather than as a conscious attempt to deny the existence of autistic adults. As seen in Table 2, charitable organizations are extremely likely to have been formed by parents and other family members of autistic children, just as autism support societies are most likely to be formed by parents. These parents might simply be portraying the image of autism they know best. The deleterious consequences, however, remain the same.

In some cases, outdated and patently offensive clip art images of children have been promoted in lieu of photographs. A case in point was the long-time appropriation by the Autism Society of America of a "Little Stephen" type image of a sad, cartoonish boy with downcast eyes, as illustrated in Figure 1. The original "Little Stephen," progenerated by the UK charity MENCAP, had been abandoned in the early 1990s, due to pressure from People First and other adult self-advocacy groups (Doddington, Jones, & Miller, 1994). More than a decade lagged before the Autism Society of America followed suit, finally dropping its version of "Little Stephen," which had been backed by puzzle pieces, an equally offensive symbol for autism due to its connotation of brokenness and bafflement. Unfortunately, even as recently as 2009, the Autism Society of America's "Little Stephen" image could still be found sadly decorating the websites of the Massachusetts and Kentuckiana chapters.

Figure 1. "Little Stephen" images used by charitable organizations. LEFT: Original "Little Stephen" image used by MENCAP prior to the 1990s; RIGHT: "Little Stephen"-like image used by the Autism Society of America until 2005.

The Cycle of Infantilization

Because parents are the leaders of autism support societies and are the primary founders of autism-related charities, and because the media tend to turn toward these charities and societies as authorities on matters autistic, the focus on children becomes an entrenched cycle. For example, when ABC News reported the results of a study that the use of infertility drugs may be associated with an increased risk of bearing an autistic child, they interviewed the chief scientific officer at Autism Speaks (Salahi, 2010); when the Statesville Record & Landmark featured a story about how autistic children view the world, they turned to the North Carolina chapter of the Autism Society of America for basic information on autism (Fuller, 2005).

Fictionalized accounts of autism in films, books, and television shows are likely to draw their information from the same sources. A recent episode of NBC's Parenthood included a story line about an Autism Speaks fundraising event, concluding with a public service advertisement featuring cast members and a suggestion to visit the Autism Speaks website for further information. While the audience for charitable websites is far from insignificant, television and other popular media provide ideal platforms for infiltrating mass culture and marketing belief systems. With an estimated 6.23 million viewers aged 18-49, the episode of Parenthood that featured Autism Speaks, complete with a callout to their website, was the highest rated show in its time slot (Gorman, 2010).

Like the majority of television shows examined in this study, the Autism Speaks-laden episode of Parenthood featured an autistic child. Adults, when they do appear in such shows, are often portrayed as dangerous criminals. Law and Order: Criminal Intent was among the first TV shows to reference Asperger syndrome with its 2003 episode, "Probability." The autistic character, Wally Stevens, was a serial murderer whose reliance on patterns betrayed him. For three years, Boston Legal included a character named Jerry Epperson, an attorney with Asperger syndrome. Denied a promotion, Epperson threatened a partner in the firm with a cake knife; subsequent plot lines revolved around his legal defense and eventual return to the office.

The cycle of infantilization comes full circle with the mass marketing of expensive therapies. Charities fuel the marketing enterprise by spreading the twin messages of the dire need for early detection and the dire consequences of delayed intervention. Parents are warned that without the most touted interventions, their children will suffer. The final stage of the cycle comes into view with pronouncements of the high costs of autism to families and society, often invoking the term "burden," which has been more responsibly outlawed in the discourse of other disabilities (Linton, 2006).

Consequences of Representation: Autistic Adults Present and Future

In 2007, the UK's NHS Information Centre reported the prevalence of autistic adults to be equal to that of autistic children (Brugha et al, 2009). Even among persons who argue adamantly (and erroneously) of a recent autism "epidemic," few can argue against the fact that over the next 15 years, more than 500,000 autistic children will reach adulthood in the U.S. alone (Cowen, 2009). These autistic adults, like all adults, will need sources of income, supportive relationships, and adequate housing. Some will need additional accommodations to achieve these goals. Vocational support is likely to be required for many as a means of easing transitions and educating employers. Demands for accommodating postsecondary environments will increase as young autistic adults enter colleges and universities (Camarena & Sarigiani, 2009).

The current employment rates for autistic people are dismal. Autistic adults not only fare more poorly in employment than their neurotypical peers, but lag behind those with other developmental disabilities (Karpur, Whitfield, Vossberg, & Clark, 2004). Employers lack the knowledge and resources to support an employee like Jack. They have, after all, like the rest of contemporary society, been inundated with rhetoric asserting that autistic children must either be cured or suffer a lifetime as unemployable burdens. Rarely has the alternative—a capable autistic adult needing appropriate workplace supports—been presented. Scarce resources will not be directed toward such an unidentified need.

An efficient computer technician, Jack loses out on one job after another due to his lack of eye contact, "inappropriate" attire, and reticence in interviews. Jill's outcome initially seems better; she has learned to suppress her animal sounds in most situations and is hired by an advertising firm, making good use of her design skills and artistic interests. Eventually, though, pushed beyond her ability to tolerate unexpected changes, she howls in a meeting with clients, and this brings an end to her employment with the company. Subsequently, she loses three jobs in a year for various minor infractions, having failed to establish positive relationships with supervisors and coworkers. Most likely, these fellow workers have not shunned Jill out of cruelty. Lacking a context for her unconventional behaviors, they may describe her as rude, unfriendly, odd, demanding, or childish. Had they been predisposed to recognize and understand autistic traits in adults, Jill's coworkers might have responded differently. Instead, Jill has lost another source of income, and when she appears on the unemployment rolls, she will be offered up as evidence that autistic adults rarely achieve financial independence. She is not the only loser here. Jill's employers have lost her unique perspective that might have found a lucrative niche market; they have incurred additional expenses associated with employee turnover. Coworkers and clients have lost the opportunity to more fully understand and experience the full range of human variance. With each rejected autistic adult, an untold wealth of assets is lost. Diversity comes tumbling after.

Jack and Jill are victims of a society informed primarily by a symbolic discourse that infantilizes autism and therefore fails to recognize and seek understanding of autistic adults. Yet, it need not be this way. In the UK, the National Autistic Society has sponsored campaigns to promote understanding of the existence and needs of autistic adults. The "I Exist" campaign, launched in 2008, featured statements, photos, and videos from autistic adults, and made recommendations for positive actions to be taken by governments toward several goals, including economic well-being and freedom from discrimination (National Autistic Society, 2008). A more recent campaign by the National Autistic Society, "Don't Write Me Off," focused on the economic needs of autistic adults and included autistic voices in the development of "a national strategy to transform access to employment" (National Autistic Society, 2010). Significantly, the National Autistic Society includes autistic adults as voting council members. While far from perfect, the National Autistic Society offers a model upon which U.S. autism-related charities might restructure themselves; it is a model that emphasizes respect for human differences.

Conclusion and Recommendations

Each year, more parents reach the same conclusion: Their autistic children are becoming autistic adults. Many of those adults will need assistance in finding adequate jobs and housing. As young autistics continue to age out of the educational system and move toward higher education and employment, the possibility grows for autistic adults in the U.S. to become at last fully visible. Advocacy will necessarily shift from the search for causes and cures and the promotion of early intervention to the legally mandated accommodations and societally necessitated supports for maintaining healthy and happy adult lives.

We believe that the doors closed to Jack and Jill have not been locked by intentional disregard, but by ignorance born of marginal exposure. Autistic adults are everywhere, but conspicuously missing from the rhetoric of autism support group and charity websites, the personas of popular books, movies, and television, and the events chronicled in contemporary news articles. Too often, autistic adults are also missing from the productive workplace. Jack may be denied the accommodations afforded to other adults with disabilities because businesses are unaware of the existence of autistic adults, much less how to support them to gain and maintain employment. Jill may fear disclosing her diagnosis to potential employers because of the harmful stereotypes they hold, stereotypes caused at least in part by society's infantilization of autism. Jack and Jill deserve better, as do all autistic adults.