Abstract

When members of the public envision the disability of autism, they most likely envision a child, rather than an adult. In this empirically based essay, three authors, one of whom is an autistic self-advocate, analyzed the role played by parents, charitable organizations, the popular media, and the news industry in infantilizing autism. Parents portrayed the face of autism to be that of a child 95% of the time on the homepages of regional and local support organizations. Nine of the top 12 autism charitable organizations restricted descriptions of autism to child-referential discourse. Characters depicted as autistic were children in 90% of fictional books and 68% of narrative films and television programs. The news industry featured autistic children four times as often as they featured autistic adults in contemporary news articles. The cyclical interaction between parent-driven autism societies, autism fundraising charities, popular media, and contemporary news silences adult self-advocates by denying their very existence. Society's overwhelming proclivity for depicting autism as a disability of childhood poses a formidable barrier to the dignity and well-being of autistic people of all ages.

Jack is autistic.1 He loves video games, rarely speaks, insists on wearing a long-sleeve t-shirt every day, and has difficulty maintaining peer relationships. Jill is autistic as well. A talented artist, she becomes very anxious when confronted with minor changes in routines. She often fails to recognize her own hunger or exhaustion, and she sometimes makes animal sounds in public places. A photograph of someone like Jill is unlikely to appear on the homepage of a local chapter of the Autism Society of America. A movie screenplay about someone like Jack is unlikely to entice Hollywood producers. Because Jack and Jill are autistic adults, rather than autistic children, they face an additional barrier: invisibility.

During the recent decade of unprecedented autism "awareness," the disability of autism has been infantilized. Autism is so predominantly considered a childhood disability that some autism "advocates" claim that autistic adults do not even exist (Kirby, 2005; Wright, 2008). In 2008, the most prominent U.S. autism charity, Autism Speaks, reported on its website an estimate of the number of "autistic people." That estimate was identical to their estimate of the number of "autistic children," thereby denying the existence of any autistic adults (Dawson, 2008). The founder of Autism Speaks, Suzanne Wright (2008), even wondered aloud, "Where are all the 50-year-old autistic people?" Wright's question was not a new one. As early as 2001, the cofounder of SafeMinds (a "private nonprofit organization founded to investigate and raise awareness of the risks to infants and children of exposure to mercury from medical products, including thimerosal in vaccines"; SafeMinds, 2010) denounced the existence of significant numbers of autistic adults in a letter submitted to British Medical Journal (Seidel, 2006). Writing in the Huffington Post, author David Kirby (2005) also claimed autistic adults did not exist.

In this empirically based essay, we examine several manifestations of the infantilization of autism, including the depiction of autism as a child-bound disability by parents, charitable organizations, the popular media, and the news industry. Although the infantilization of autism arises from the age-old exploitation of children as tools of pity and the 21st-century marketing of autism as a new phenomenon, we argue the infantilization of autism is perpetuated by a cyclical interaction between parent-driven autism societies, autism fundraising charities, and mass media portrayals via the entertainment and news industries.

Manufacturing pity through depictions of disabled children is nothing new and is certainly not unique to autism. The paternalistic "poster child" concept continues to be exemplified by the Muscular Dystrophy Association's annual telethon hosted by Jerry Lewis, who refers to adults and children alike as his "kids," while dismissing the criticisms of self-advocates with quips such as, "If you don't want to be pitied because you're a cripple, stay in your house" (Ervin, 2009). Adults with disabilities in general, and those with developmental disabilities in particular, have long been treated as childlike entities, deserving fewer rights and incurring greater condescension than adults without disabilities. The stereotype of the "eternal child" has burned a disturbing path through history and continues to wreak havoc in arenas ranging from employment discrimination to forced sterilizations (Osburn, 2009; Pfeiffer, 1994; Wolfensberger, 1972).

The infantilization of autism stems in part from this sordid history, but also arises from features unique to the development of the concept of autism. Increases in the number of individuals diagnosed with autism, due primarily to changes in diagnostic criteria that occurred in the 1990s, have been grossly misinterpreted as an autism epidemic (Gernsbacher, 2008; 2009; Gernsbacher, Dawson, & Goldsmith, 2005). Many of the most frightening (and erroneous) claims of a so-called autism epidemic have been made by charitable organizations to fuel their marketing campaigns. For instance, one charity's depiction of autism as a national emergency akin to mass kidnapping (e.g., Mergenthaler, 2009) undoubtedly was purposed to exploit parents' fears. Simply acknowledging that autistic adults exist in numbers equal to that of autistic children would jeopardize this rickety platform for fear-based fundraising.

Many parents of autistic children also perpetuate the myth of the non-existence of autistic adults. In doing so, parents become the de facto spokespersons for the disability, displacing the adults who actually experience the disability. Parents then appropriate the majority of rhetoric about autism, and, with ample media reinforcement, the discourse revolves around only children. To examine empirically the hypothesis that society infantilizes autism, we analyzed the role played by parents, as well as those played by charitable organizations, the popular media, and the news industry.

The Infantilizing of Autism by Parent-Run Organizations

After a child receives an autism diagnosis, parents begin searching for treatment for their child and socio-emotional support for themselves. Over time, many parents come to accept their child's autism diagnosis (King et al., 2006) and shift from problem-oriented coping (such as seeking fixes and cures) toward emotion-based coping (such as appreciating their child's strengths; Gray, 2006). However, parents of newly diagnosed children often seek out and then cleave to support organizations (Mandell & Salzer, 2007). We hypothesized that support organizations, which are created and run by parents, would be very likely to infantilize autism to bolster the representation of autism as a childhood disability, and that we could observe such infantilization by examining the organizations' choices of images to represent the face of autism—literally.

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.

Table 1. Portrayals of Autism by Chapters of the Autism Society of America
ChapterWebsitePhotos of ChildrenPhotos of Adults% Photos Children
California: Coachella Valleyhttp://cvasa.org/30100%
California: Northern Californiahttp://www.autismsocietynca.org/30100%
California: San Diegohttp://www.sd-autism.org/4180%
California: San Francisco Bay Areahttp://sfautismsociety.virtualave.net/90100%
California: Ventura Countyhttp://www.vcas.info/60100%
Coloradohttp://www.autismcolorado.org/50100%
Colorado: Boulder Countyhttp://www.autismboulder.org/10100%
Connecticuthttp://www.autismsocietyofct.org/10100%
Floridahttp://www.autismfl.com/4180%
Florida: Greater Orlandohttp://www.asgo.org/8189%
Florida: Miami-Dade Countyhttp://www.autismsocietymiami.org/10100%
Florida: Panhandlehttp://www.autismpensacola.org/50100%
Georgia: Greater Georgiahttp://www.asaga.com/10100%
Idaho: Panhandlehttp://www.panhandleautismsociety.com/40100%
Illinoishttp://www.autismillinois.org/20100%
Illinois: Central Illinoishttp://www.asacic.org/30100%
Illinois: Northwest Suburban Illinoishttp://www.autismillinois.com/10100%
Indianahttp://www.inautism.org/10100%
Iowahttp://www.autismia.org/10100%
Kansas: Heartlandhttp://www.asaheartland.org/10100%
Louisiana: Acadianahttp://www.acadianaautism.org/50100%
Louisiana: Greater New Orleanshttp://www.autism-society.org/chapter16810100%
Louisiana: Northeast Louisianahttp://www.autismnela.org/10100%
Mainehttp://www.asmonline.org/3175%
Marylandhttp://www.maryland-autism.org/80100%
Maryland: Harford Countyhttp://www.harfordcountyautismsociety.com/00100%
Michiganhttp://www.autism-mi.org/40100%
Michigan: Kalamazoo/ Battle Creekhttp://www.asa-kal.org/1150%
Minnesotahttp://www.ausm.org/10100%
Nebraskahttp://www.autismnebraska.org/40100%
New York: Albanyhttp://www.albanyautism.org/40100%
New York: Western New Yorkhttp://www.autismwny.org/10100%
North Carolinahttp://www.autismsociety-nc.org/3175%
Ohio: Central Ohiohttp://www.autism-centralohio.com/10100%
Ohio: Greater Cincinnatihttp://www.autismcincy.org/10100%
Ohio: Greater Clevelandhttp://www.asgc.org/20100%
Ohio: Tri-County Ohiohttp://www.triautism.com/20100%
Oregonhttp://www.oregonautism.com/20100%
Pennsylvania: Berks Countyhttp://www.autismsocietyofberks.org/40100%
Pennsylvania: Northwestern Pennsylvaniahttp://www.nwpa-asa.org/30100%
Pennsylvania: Pittsburghhttp://www.autism-society.org/pittsburgh_chapter10100%
South Dakota: Black Hillshttp://www.autismsd.org/10100%
Tennessee: East Tennesseehttp://asaetc.org/4180%
Tennessee: Middle Tennesseehttp://www.tnautism.org/40100%
Vermonthttp://www.autism-info.org/10100%
Virginia: Northern Virginiahttp://www.asanv.org/50100%
Virginia: Tidewaterhttp://www.tidewaterasa.org/10100%
Wisconsin: Greater Madisonhttp://www.autismmadison.org/10100%
Wisconsin: Southeastern Wisconsinhttp://www.assew.org/11192%
Total144895%

The Infantilizing of Autism by Charitable Organizations

Organizations of all ilk that solicit charitable donations frequently employ children to evoke pity and loosen pocket books. For example, Manna Food Bank, a subsidiary of Feeding America, the leading hunger relief charity in the United States, features on its homepage a large photo of a backlit grade-school age child eating from an empty bowl, and the website's navigation is cued with thumbnail photos of children. However, none of the discourse presented on the Manna Food Bank's website suggests that hunger is specific to children—not even on their "Face of Hunger" page, which hosts a photo of a doe-eyed kindergartner biting into a shiny apple (Manna Food Bank, 2010). We hypothesized that, in contrast, autism-related charities would specifically use child-referenced language to define and describe autism and thereby contribute to the infantilization of autism.

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.

Table 2. Portrayals of Autism by Charitable Organizations
Organization NameWebsiteReported Revenuea Autism DiscourseFounders
Autism Speaks, Inc.http://www.autismspeaks.org/$69,288,848Childgrandparents
Autism Consortium, Inc.http://www.autismconsortium.org/$3,425,121Childresearchers
Doug Flutie Jr. Foundation for Autism, Inc.http://www.dougflutiejrfoundation.org/$2,823,349Child and Adultparents
Utah Autism Foundationhttp://www.utahautismfoundation.org/$1,375,129Childparents
Organization for Autism Research, Inc.http://www.researchautism.org/$1,346,747Child and Adultparents and grandparents
Autism Society of America Foundation, Inc.http://www.autism-society.org/$433,263Child and Adultparents
Childhood Autism Foundation, Inc.http://www.cadef.org/$400,880Childparents and community leaders
Young Autism Program Charitable Foundation, Inc.http://www.yap-cf.org/$310,180Childparents
Autism International Association, Inc.http://www.autismone.org/$290,263Childparents
Friends of Autismhttp://www.friendsofautism.org/$277,963Childparents and friends
Autism Family Foundation of Northeast Ohiohttp://www.autismfamilyfoundation.org/$266,046Childfamily members
National Foundation for Autism Researchhttp://www.nfar.org/$239,303Childparents
a Reported revenue from tax period between 06/2008 and 06/2009

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.

The Infantilizing of Autism by the Popular Media

A society's entertainment industry reflects that society's values. Historically, popular media infantilized disability, from Charles Dickens' literary character Tiny Tim in the 1800s (Barnes, 1992) through the advertising industry's "poster children" in the 1900s (Riley, 2005). However, as the New York Times noted a few years ago, for most all disabilities, the "heart-wrenching movie of the week and fundraising telethons striving for cures have given way to amputees rock climbing on reality shows like 'The Amazing Race' and doing the jive on 'Dancing With the Stars'" (Navarro, 2007). Child actors, such as Chris Burke, who with Down syndrome played Corky on Life Goes On, have given way to adult actors, such as Robert David Hall, who as a double amputee plays Dr. Robbins on CSI.

However, considering how frequently society brandishes the specific disability of autism as pertaining only to children, we hypothesized that despite the entertainment industry's maturity with regard to its representation of other disabilities, its representation of autism would be frozen, childlike, in the past. We investigated this hypothesis by examining whether characters portrayed as autistic in fictional books, narrative films, and television programs were children or adults.

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.

The Infantilizing of Autism by the U.S. News Industry

Daily newspaper articles document the most current conceptualizations of all aspects of society, including disability. When writing news articles about persons with disabilities, reporters historically focused on the emotional aspects of disability, utilizing belittling language (e.g., "suffers from") and capitalizing on "super-crip" narratives in which an individual heroically overcame his or her disability (Johnson, 1989). More than two decades ago, the editor of The Disability Rag likened this approach to exploiting disability as the angle for a story as akin to exploiting race or gender (Johnson, 1989).

Today, journalism ethics dictate mentioning an individual's disability only if relevant (Communications, Energy and Paperwork Union, 2004). However, because parents of autistic offspring promote children, rather than adults, as the face of autism, charities limit much of their discourse to child-based references, and the entertainment industry restricts autistic characters to mostly children, we hypothesized that news articles would echo this infantilization. We examined this hypothesis by analyzing whether the autistic persons featured in a recent month of news articles were more likely to be children or adults.

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.

Discussion

To examine the hypothesis that the disability of autism is frequently infantilized, we analyzed the role played by parents, charitable organizations, the popular media, and the news industry. We found that parents portrayed the face of autism to be that of a child 95% of the time on the homepages of regional and local support organizations. Nine of the top 12 autism charitable organizations restricted descriptions of autism to child-referential discourse. Fictional characters depicted as autistic were children in 91% of fictional books and 68% of narrative films and television programs. The news industry featured autistic children four times as often as they featured autistic adults in contemporary news articles. These data support our hypothesis. In what follows, we discuss the ramifications of the infantilization of autism, and we provide recommendations for attenuating this unfortunate pattern.

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.

little stephen images used by charitable organizations; refer to caption for more information

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.

Works Cited

Endnotes

  1. See Sinclair (1999; http://www.jimsinclair.org/) to appreciate our respectful use of the term "autistic" rather than "person with autism."


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Copyright (c) 2011 Jennifer L. Stevenson, Bev Harp, Morton Ann Gernsbacher



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