**2. Raising Public Awareness about Autism**

The prevalence of ASD in and of itself has heightened public awareness. What was once considered a rare condition is now reported to affect 1 in 88 children [7]. Recent data from a study that included population-wide screening procedures suggest that the true prevalence of ASD may be even higher [10]. In the case of ASD, awareness is essential because awareness promotes detection, and successful detection efforts result in earlier intervention, maximizing optimal outcomes for this population. Given that there is an average 13-month lag from initial evaluation to diagnosis, and that the average age of initial evaluation is 48 months with diagnosis occurring at 61 months [11], ASD awareness efforts are far from complete. Impor‐ tantly, limited awareness of the behavioral characteristics of young children with ASD has been noted for both parents and healthcare professionals. For example, data collected in 2004 by Porter Novelli and the Centers for Disease Control and Prevention show that 63% of parents reported not knowing what behaviors most suggested ASD, and that 57% did not know the best time to get help for children with ASD [12]. These data also indicated that healthcare professionals need more information on developmental milestones and developmental disabilities in that 30% recommended that concerned parents should wait to see if their child's development progresses, and only 41% felt they had the necessary resources to educate parents. Further, awareness campaigns continue to document a considerable gap between best practice and the behaviors of healthcare professionals [13].

#### **2.1. Barriers to public awareness about autism**

Awareness efforts are critical to improve rates of detection, access to Early Intervention serv‐ ices, and promote optimal outcomes. It is clear that a lack of education and access to accurate information are key barriers to ASD awareness efforts. Before addressing issues related to dis‐ semination of information, it is important to evaluate more emotionally-hinged barriers, namely the predominance of negative and stigmatizing stories about ASD in the media and so‐ cial stigma that may vary across cultures. It is unclear whether stigma and negative stereo‐ types interfere with people's ability to access accurate information, whether a lack of accurate information promotes stigma and stereotypes, or whether the two are reciprocally linked.

#### **1.** Portrayals of ASD in the media

mentation is tangible. This chapter outlines a sequence of four connected activities aimed at improving early identification of ASD and promoting successful referrals for Early Interven‐ tion services. For each step in the sequence, this chapter (1) describes the barriers that autism advocates, families, and PCPs face, and (2) showcases novel educational approaches that aim

**Figure 1.** A sequence of four connected activities aimed at improving early identification of ASD and promoting suc‐

The prevalence of ASD in and of itself has heightened public awareness. What was once considered a rare condition is now reported to affect 1 in 88 children [7]. Recent data from a study that included population-wide screening procedures suggest that the true prevalence of ASD may be even higher [10]. In the case of ASD, awareness is essential because awareness promotes detection, and successful detection efforts result in earlier intervention, maximizing optimal outcomes for this population. Given that there is an average 13-month lag from initial evaluation to diagnosis, and that the average age of initial evaluation is 48 months with diagnosis occurring at 61 months [11], ASD awareness efforts are far from complete. Impor‐ tantly, limited awareness of the behavioral characteristics of young children with ASD has been noted for both parents and healthcare professionals. For example, data collected in 2004 by Porter Novelli and the Centers for Disease Control and Prevention show that 63% of parents reported not knowing what behaviors most suggested ASD, and that 57% did not know the best time to get help for children with ASD [12]. These data also indicated that healthcare professionals need more information on developmental milestones and developmental disabilities in that 30% recommended that concerned parents should wait to see if their child's development progresses, and only 41% felt they had the necessary resources to educate parents. Further, awareness campaigns continue to document a considerable gap between best

Awareness efforts are critical to improve rates of detection, access to Early Intervention serv‐ ices, and promote optimal outcomes. It is clear that a lack of education and access to accurate information are key barriers to ASD awareness efforts. Before addressing issues related to dis‐ semination of information, it is important to evaluate more emotionally-hinged barriers,

cessful referrals for Early Intervention services.

4 Recent Advances in Autism Spectrum Disorders - Volume I

**2. Raising Public Awareness about Autism**

practice and the behaviors of healthcare professionals [13].

**2.1. Barriers to public awareness about autism**

to promote families' access to prompt and appropriate Early Intervention services.

In addition to being a key source of entertainment and news, mass media tends to perpetuate stereotypes and social beliefs in a way that defines and maintains an existing social order [14]. Portrayals of ASD in film (e.g., *Rainman, What's Eating Gilbert Grape?*), fiction (e.g., *The Curious Incident of the Dog in the Night-Time* [15]; *Daniel Isn't Talking* [16]), and non-fiction parent ac‐ counts of ASD (e.g., *Real Boy: A True Story of Autism, Early Intervention, and Recovery* [17]; *Let Me Hear Your Voice: A Family's Triumph Over Autism* [18]) provide an index of the general increase in ASD awareness. However, there is some disagreement as to whether these representations have a positive or negative impact on awareness efforts [19, 20]. Claims of 'miracle cures' for ASD that victimize vulnerable families and contribute to unrealistic perceptions of the treata‐ bility of ASD are clearly harmful [21]. Jones and Harwood provided a content analysis of 1,228 articles about ASD published from 2002 to 2005 in the Australian media [20]. This analysis re‐ vealed some interesting patterns, including a limited amount of factual information in media sources, and descriptions of people with ASD as either dangerous and uncontrollable or un‐ loved and poorly treated. Overall there was a predominance of 'negative' stories about ASD in‐ cluding numerous references to the impact on families, difficulties with diagnosis, and criminal cases. The authors submit that the implication of this type of coverage is likely a re‐ duction in people's willingness to engage with individuals with ASD, creating barriers for so‐ cial and educational inclusion. Further research is needed to evaluate the impact of media stereotypes of ASD on screening and early identification efforts.

#### **2.** Cultural representations of ASD

Vast differences in attitudes and approaches to ASD have been reported for culturally and lin‐ guistically diverse groups. For example, it has been reported that families in Korea are hesi‐ tant to seek help for their children's developmental problems, including ASD, because they are seen as a mark of shame [22]. The effects of stigma have been evaluated for HIV/AIDS, mental illness, ASD, tuberculosis, leprosy, and cancer [23]. Social stigma relating to a condition or dis‐ order can contribute to decreases in willingness to disclose disease status, health-seeking be‐ havior, quality of care received, and social support [24]. Stigma may also be inadvertently perpetuated by healthcare professionals who maintain prejudice and negative stereotypes about ASD and mental health conditions [25, 26]. Cultural interpretations of disability can of‐ ten be found in the context of religion. For example, a qualitative study indicated that Ortho‐ dox Jewish Israeli parents view their child with ASD as having a high spiritual status or important religious mission [27]. In contrast, almost half of the Irish families interviewed by Coulthard and Fitzgerald reported that having a child with ASD had prompted them to dis‐ tance themselves from religion [28]. Cultural perspectives may also influence families' uptake of services. For example, a general lack of trust in service providers has been described as one factor related to African American's underutilization of mental health services [29].

#### **3.** Financial barriers to successful awareness campaigns

The most practical and often insurmountable barrier to effective awareness campaigns is that of financial restriction. Incredible expense is associated with communicating a message to the public, and campaigns with insufficient funding are often limited in their success. One study, for example, reported that reliance on public service announcements often leads to suboptimal time slots resulting in limitations in the delivery of the message to the intended audience [30]. Autism Speaks collaborated with the CDC and the Ad Council on the 'Learn the Signs. Act Early.' campaign, and initiated 'Light It Up Blue', a campaign to celebrate World Autism Awareness Day. In conducting these and other awareness efforts, Autism Speaks spends more than \$15,000,000 annually [31].

suspected [37]. This model assumes that the change of health-related behaviors is a multistage process where individuals move from precontemplation, to contemplation, to preparation, to action, and finally to maintenance. Results from surveys and focus groups revealed that, even though many parents were aware of ASD, they were not aware of relevant developmental milestones, and did not believe that ASD was particularly relevant to them (i.e., precontemplation stage). Healthcare professionals and early childhood educators showed more awareness of relevant developmental milestones, but reported that they did not routinely monitor these milestones or communicate concerns

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Promoting Early Identification of Autism in the Primary Care Setting: Bridging the Gap Between What We Know and

**2.** *Influencing the information environment.* The LSAE campaign developed a comprehensive approach for providing parents of young children with accurate information. Campaign materials include factsheets on developmental milestones (in English and Spanish), a campaign website, print and web banner advertisements, television and radio public service announcements, and a 24/7 live call center (1-800-CDC-INFO). The campaign was launched with a satellite media tour with the CDC Director; the public service announce‐ ments aired in collaboration with various TV and radio networks; and the campaign materials were distributed in partnership with local grassroots organizations, private sector companies, and key advocacy organizations (e.g., Autism Society of America, Autism Speaks, and First Signs). Similarly, complex information environments were also

**3.** *Creative message framing.* One of the biggest challenges for public health campaigns is to stand out in our society's very crowded information environment, so that the message of the campaign gets sufficient exposure [36]. To increase the likelihood that the campaign messages capture the target audiences' attention, LSAE used a creative approach for creating and delivering messages. For example, the resource kit for healthcare professio‐ nals featured a picture of a child with the background text, 'A 4-year-old child with autism was once a 3-year-old child with autism, was once…'. Similarly, the TV public service announcement was first aired in New York's Times Square, reaching more than 91 million

**4.** *Creating a supportive environment to assist individuals with behavior change.* To support the target audiences' transition from contemplation to action, LSAE developed several key tools. For example, the campaign used familiar images such as a growth chart, but modified it to encourage and support the tracking of emotional, cognitive, and social development. Materials for physicians included fact sheets with milestones and red flag warning signs by age as well as informational cards to encourage doctor-parent dialogue.

**5.** *Incorporating process analysis and exposure assessment.* The campaign organizers utilized surveys and focus groups to understand the target audience (e.g., their knowledge, beliefs, attitudes, and behaviors) and how best to reach them. In addition, focus groups were also used to develop, test, and refine potential campaign concepts and accompanying images. Results revealed that fear-based messages that focus on the severity of ASD quickly turned parents away. Thus, instead of focusing on 'ASD', messages targeted the parents' natural and strong desire to monitor their child's growth and development. Finally, outcome

created for healthcare professionals and early childhood educators.

with parents [36].

people.

#### **2.2. Novel approaches to raising public awareness about autism**

Bertrand and colleagues define health awareness campaigns as programs designed to com‐ municate educational messages to promote awareness and/or behavior change to a target population through large-audience channels such as the Internet (websites and social net‐ working sites), television, radio, and print media (magazines, billboards, and posters) [32]. Support for the effectiveness of awareness campaigns are mixed with some associated with positive behavior change [33], and others having little to no effect [34]. Further, recent events demonstrate that negative awareness campaigns may be ineffective if they are perceived as disturbing or offensive. In December 2007, the New York University Child Study Center initiated an ASD awareness campaign in New York City that utilized advertisement notices resembling ransom notes indicating that 'We have your son. We will make sure he will no longer be able to care for himself or interact socially as long as he lives. Autism.' The ads were immediately met with significant backlash from the disability community as many families and individuals with ASD called and emailed the center to report that the ads were offensive and hurtful. It was suggested that ads such as this would contribute more to the spread of stigma and fear than to improve awareness efforts, and as a result of this outcry the Child Study Center cancelled the awareness campaign [35].

#### *2.2.1. The 'Learn the signs. Act early.' campaign*

In 2004 the CDC launched an ongoing public health campaign entitled "Learn the Signs. Act Early" (LSAE; [12]). The primary target audience for the campaign is parents of children aged 4 years or less, healthcare professionals (particularly pediatricians), and early educators, including childcare providers and preschool teachers. Campaign objectives are to increase awareness of developmental milestones and early warning signs, to increase knowledge about the benefits of early action, to increase dialogue between parents and providers, and to increase early action when developmental delay is suspected. Very effectively, this campaign incorpo‐ rated several key features considered crucial for promoting behavior change [36].

**1.** *Using a theoretical framework to conceptualize and guide behavior change.* The Transtheoretical Model was used to plot where the target audiences were in terms of a) their awareness and monitoring of developmental milestones, and b) acting early when a delay is first **3.** Financial barriers to successful awareness campaigns

6 Recent Advances in Autism Spectrum Disorders - Volume I

**2.2. Novel approaches to raising public awareness about autism**

Study Center cancelled the awareness campaign [35].

*2.2.1. The 'Learn the signs. Act early.' campaign*

than \$15,000,000 annually [31].

The most practical and often insurmountable barrier to effective awareness campaigns is that of financial restriction. Incredible expense is associated with communicating a message to the public, and campaigns with insufficient funding are often limited in their success. One study, for example, reported that reliance on public service announcements often leads to suboptimal time slots resulting in limitations in the delivery of the message to the intended audience [30]. Autism Speaks collaborated with the CDC and the Ad Council on the 'Learn the Signs. Act Early.' campaign, and initiated 'Light It Up Blue', a campaign to celebrate World Autism Awareness Day. In conducting these and other awareness efforts, Autism Speaks spends more

Bertrand and colleagues define health awareness campaigns as programs designed to com‐ municate educational messages to promote awareness and/or behavior change to a target population through large-audience channels such as the Internet (websites and social net‐ working sites), television, radio, and print media (magazines, billboards, and posters) [32]. Support for the effectiveness of awareness campaigns are mixed with some associated with positive behavior change [33], and others having little to no effect [34]. Further, recent events demonstrate that negative awareness campaigns may be ineffective if they are perceived as disturbing or offensive. In December 2007, the New York University Child Study Center initiated an ASD awareness campaign in New York City that utilized advertisement notices resembling ransom notes indicating that 'We have your son. We will make sure he will no longer be able to care for himself or interact socially as long as he lives. Autism.' The ads were immediately met with significant backlash from the disability community as many families and individuals with ASD called and emailed the center to report that the ads were offensive and hurtful. It was suggested that ads such as this would contribute more to the spread of stigma and fear than to improve awareness efforts, and as a result of this outcry the Child

In 2004 the CDC launched an ongoing public health campaign entitled "Learn the Signs. Act Early" (LSAE; [12]). The primary target audience for the campaign is parents of children aged 4 years or less, healthcare professionals (particularly pediatricians), and early educators, including childcare providers and preschool teachers. Campaign objectives are to increase awareness of developmental milestones and early warning signs, to increase knowledge about the benefits of early action, to increase dialogue between parents and providers, and to increase early action when developmental delay is suspected. Very effectively, this campaign incorpo‐

**1.** *Using a theoretical framework to conceptualize and guide behavior change.* The Transtheoretical Model was used to plot where the target audiences were in terms of a) their awareness and monitoring of developmental milestones, and b) acting early when a delay is first

rated several key features considered crucial for promoting behavior change [36].

suspected [37]. This model assumes that the change of health-related behaviors is a multistage process where individuals move from precontemplation, to contemplation, to preparation, to action, and finally to maintenance. Results from surveys and focus groups revealed that, even though many parents were aware of ASD, they were not aware of relevant developmental milestones, and did not believe that ASD was particularly relevant to them (i.e., precontemplation stage). Healthcare professionals and early childhood educators showed more awareness of relevant developmental milestones, but reported that they did not routinely monitor these milestones or communicate concerns with parents [36].


surveys indicate 34% of parents reported some familiarity with the LSAE campaign. Significant changes in target parent behaviors were detected in that more parents knew of the behaviors likely to be associated with ASD, the best time to get help for ASD, and the developmentalmilestones their childshouldbe reaching[38].Similarly, substantiallymore healthcare professionals believe that they have the resources necessary to educate parents about monitoring child development, and fewer advocated a 'wait and see' approach, indicating that the marketing campaign was effective [39].

study that aimed to identify toddlers with ASD, Robins [47] screened a total of 4,797 children, identifying 21 children who were later diagnosed with ASD. Of those 21 children, only 4 were

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The use of general developmental screening instruments has been recommended by the AAP since 2001 [48]. Current recommendations for identifying children with developmental disabilities (not specifically ASD) suggest population-wide screening at 9, 18, and 30 months [5]. Empirical information on the extent to which these recommendations have been imple‐ mented is limited. Two national surveys of AAP members completed in 2002 and 2009 indicate that implementation has been slow [49, 50]. When asked about their screening practices, only 23.0% (2002) and 47.7% (2009) of physicians reported that they 'always' or 'almost always' administer a formal screening tool. Since many healthcare professionals may administer standard screening tools in a non-standard manner (e.g., by asking some but not other items) or only administer these tools to patients considered 'high risk', these numbers likely overes‐ timate true implementation [51]. Researchers who asked parents to report on the screening practices of their healthcare professionals found that less than 27% of parents of children between 10 to 35 months recalled completing a developmental screening questionnaire within the last 12 months [52]. Only two survey-based studies have evaluated the implementation of ASD-specific screening instruments. In a 2004 survey of 255 pediatricians licensed in Maryland and Delaware, dosReis and colleagues reported that only 8% of the respondents screened for ASD [53]. In a 2007 survey of 51 pediatricians licensed in Alabama and Mississippi, Gillis reported that 28% reported using ASD-specific screening instruments [54]. Importantly, only one pediatrician reported routine screening for ASD at 18- or 24-months, suggesting that many healthcare professionals administer ASD-specific screening tests only to children who are

Well-child visits are often the only routine, formalized, and longitudinal contact a child has with a healthcare professional and thus is an ideal place to implement population-wide screening. Given this widely acknowledged responsibility, it is striking that many practices do not implement developmental and ASD-specific screening measures as recommended by the AAP. In the following we will consider several key barriers that interfere with healthcare

The Medical Expenditure Panel Survey provides nationally representative information on preventive care for children between 0 and 5 years of age [55]. Results indicate that the average compliance ratio is 71.3% (*SD* = 1.4%), indicating that on average, parents attend about 3 out of 4 AAP recommended well-child visits. In addition, findings reveal large variation in wellchild visit attendance based on the families' socioeconomic status, access to resources, and geography. That is, the compliance ratio was significantly below average if the child was

previously red-flagged by the child's pediatrician.

considered 'high risk'.

**3.2. Recommended and implemented screening practices**

*3.2.1. Barriers to successful screening in the primary care setting*

professionals' ability to implement effective screening practices.

**1.** Parental compliance with the preventive pediatric healthcare schedule
