**4. Communicating concerns about autism to parents**

training session on early identification of ASD is presented to the entire office staff of individual practices [67]. In the following section, we will describe a third approach that has been used widely to improve the delivery of high-quality healthcare, although it has yet to be imple‐

The Breakthrough Series Collaborative Model (BSCM) has been developed by the Institute of Healthcare Improvement (IHI, www.ihi.org) [68], and used successfully to improve the delivery of preventive services by pediatric practices [69], follow-up to newborn hearing screening [70], and child mental health service use [71]. In this model, several healthcare provider teams partner with external experts to overcome specific barriers that impede the delivery of high-quality care within their organization. Figure 2 presents the key elements of

The breakthrough series starts with the selection of a specific topic that is considered ripe for improvement. Even though data on the efficacy of learning collaboratives to increase early identification of ASD has not been published to date, we suggest that this would be a very appropriate topic, (1) because of the high prevalence rates of ASD, and (2) because the existing knowledge in this area is sound but not widely used. Once the topic is selected, a faculty team is assembled that combines expertise in the subject area as well as an improvement advisor who coaches teams on improvement methods. Organizations elect to join the collaborative through an application process, appointing multi-disciplinary teams within the organization (a champion's committee). The multi-disciplinary teams from all organizations are then brought together for Learning Sessions that combine the exchange of formal academic

mented with a focus on improving early detection of children with ASD.

The Breakthrough Series Collaborative Model

12 Recent Advances in Autism Spectrum Disorders - Volume I

a Breakthrough Series model.

**Figure 2.** Breakthrough Series Model

When multiple risk factors are present (e.g., the child has a family history of ASD, the child's parents or other family members are concerned about behaviors related to ASD, the child's pediatrician notes concerns about ASD, or the child fails an ASD-specific screener), the AAP clinical practice guidelines recommend that the child's PCP simultaneously (1) provides parental education on ASD, (2) refers the child for a comprehensive ASD evaluation, (3) refers the child for an audiology evaluation, (4) refers the child to Early Intervention or Early Childhood Education Services, and (5) schedules a targeted follow-up visit within one month [6]. Accomplishing all five actions simultaneously is considered crucial to avoid costly delays.

Little is currently known about how parents experience autism-specific screening, parent education, and referrals provided by the child's PCP in accordance with the AAP clinical practice guidelines. By definition, these interactions between PCP and parent precede a formal ASD diagnosis. Thus, PCPs typically communicate a certain level of uncertainty about the child's ASD diagnosis, emphasizing that the child is considered to be at 'high risk for ASD', and focusing on the need for a comprehensive evaluation to 'rule out ASD'. Even at this tentative level, communicating concerns about ASD requires initiating or engaging parents in a difficult conversation. For some parents, this conversation confirms suspicions that lay dormant for various amounts of time. For other parents, it comes out of nowhere and confronts them with concerns they had not previously contemplated. In either case, parents might not yet be emotionally ready to consider the possibility that their child has autism. Parents often feel responsible for their child's behavior or delays, feel guilty about not noticing or acting upon these concerns more promptly, and fear the stigma all too often associated with devel‐ opmental disabilities.

When prompted to reflect upon the time when their child was first diagnosed, many parents of older individuals with ASD express significant levels of discontentment, in some cases resentment and anger [72, 73]. In part, these strong emotions stem from the fact that most families experience significant delays between the time when they first note concerns [73], the time when they choose to share these concerns with their child's physician [9, 74], the time when their child is first evaluated [11], and the time when the ASD diagnosis is first given [7, 11]. On average, parents report seeing four to five doctors before an ASD diagnosis is made, which occurs on average at age of four or five years [7, 11, 72, 73]. Parental perceptions of delay in diagnosis due to 'watchful waiting' are associated with (1) lower satisfaction with the diagnostic process, (2) lower satisfaction with the help physicians offer after the diagnosis, and (3) lower parental confidence in the physician's ability to help [72, 73, 75].

Parents also express dissatisfaction with the manner in which their child's pediatrician discussed developmental concerns and/or delivered the ASD diagnosis. For example, parents report dissatisfaction if a diagnosis is made but next steps and outcomes are not discussed [26]. Similarly, most parents of children with autism express a preference for receiving a clear ASD label rather than hearing about their child's autism "tendencies" or "trends" [73]. This preference for sincere, prompt, and honest information, even if this means that the physician has to admit a level of uncertainty, can also be found in other medical conditions. For example, cancer patients reported the highest levels of satisfaction and the lowest levels of anxiety when they felt that their healthcare professional prepared them adequately for the diagnosis, when they felt they were being told "everything", when the word "cancer" was used, and when their need to discuss life expectancy had been satisfied [76]. Importantly, high levels of trust in the physician has been linked to high levels of adherence to recommended behavior change [77].

**2.** Doubts about the accuracy of ASD-specific screening tests

may use their own clinical judgment to prevent over-referrals.

**4.** Lack of experience in delivering 'bad news' in uncertain situations

**3.** Expectations about parental reactions

Available ASD-specific screening tests are far from perfect. As discussed above, if the M-CHAT is administered without the follow-up interview, over-identification is likely to occur at a rate of 17:1 [47]. Several authors have emphasized the utility of second-stage autism-specific screeners in a referral setting to help prevent over-referral and effectively direct high-risk children toward comprehensive ASD evaluations [61, 81, 82]. Even though the M-CHAT follow-up interview has been developed to reduce the number of false positive screens, a feasible process for implementing this interview in the context of children's well-child visits has not been developed. In the absence of an effective second-stage screening process, PCP's

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

What We Do

15

http://dx.doi.org/10.5772/53715

Even though timely referrals for a comprehensive ASD evaluation and Early Intervention services are important first steps, not all parents choose to comply with their pediatricians' referrals and pursue further evaluations [51, 75, 83]. Importantly, parental compliance rates with ASD-specific referrals tend to be lower in younger, and higher in older children. For example, Pierce and colleagues showed that 40% of parents refused a comprehensive followup evaluation after failing the CSBS Infant Toddler Checklist at 12 months [3]. Similarly, Pandey and colleagues reported that 37% of parents of younger children (16 to 23 months) refused a referral for a comprehensive ASD evaluation after a failed M-CHAT follow-up interview [84]. In older children (24 to 30 months), the refusal rate was only 21%. In making decisions about a child's referrals, PCPs may gauge the likelihood of a parents' compliance, and thus be more reluctant to make ASD-specific referrals for younger than for older children.

Primary care providers may be reluctant to administer population-wide screening measures for ASD if they have had little or no training in sharing bad news with patients. A review of the relevant literature in cancer has revealed that delivering difficult news can be stressful and physicians may struggle with handling their own emotions of sorrow, guilt, and feelings of failure [85]. Unsurprisingly, physicians report a desire for more training in delivering bad news [85], and physicians who have received such training have expressed increased competence

How to communicate difficult news to patients has been widely studied, particularly related to cancer. For example, Eid and colleagues [87] tested a standardized intervention to im‐ prove communication skills in hematology-oncology fellows and nurses. The fellows and nurses were tested pre-intervention via mock clinical interviews where a "patient" had to be informed of bad news concerning their cancer care. The intervention consisted of one 45-mi‐ nute interactive lecture that outlined specific methodology for delivering bad news and case scenarios to highlight proper strategies. Fellows and nurses also had the opportunity to watch and score the investigators displaying ideal as well as incorrect practices for deliver‐

in having conversations where difficult information needs to be delivered [86-88].

**4.2. Novel approaches to improve communication about autism with parents**

#### **4.1. Barriers to successful communication between healthcare provider and parents**

The AAP clinical practice guidelines recommend that once ASD is seriously considered (i.e., due to a failed ASD-screener or multiple risk factors) the parent is promptly educated about ASD and referred for Early Intervention services. Research on the implementation of general developmental screening suggests that referral rates for children who fail such screeners vary tremendously across providers (*M* = 61%; range: 27% to 100%; [51]). Similarly, two descriptive studies on early identification of ASD in the healthcare setting found that referral to a clinical specialist (e.g., a developmental pediatrician) is the most likely response when autism is first suspected [53, 54]. In the absence of a simultaneous referral to Early Intervention, referral to a clinical specialist can significantly delay children's access to services due to long waiting lists. In addition, the preference for referring families only to a clinical specialist reveals that, even in the presence of a failed ASD-screener, PCPs may often not feel ready to discuss autism with the child's parents. The reasons why PCPs use their own clinical judgment or uncertainty to override the results from a positive screening test are currently poorly understood [78]. This being said, considering a possible ASD-specific referral requires a delicate balancing act between the PCP's clinical judgment, tolerance for uncertainty, trust in screening tests, expectations about parental reactions, self-efficacy with regard to giving 'bad news' and confidence in the available service system. In the following we will describe select components of this tenuous balancing act, and discuss how each factor challenges the PCPs ability to effectively communicate with parents about autism.

#### **1.** Limited, outdated, or incorrect information on ASD and effective interventions

In a recent survey, PCPs reported feeling less competent providing care to children with ASD compared to children with other neurodevelopmental disorders and chronic conditions [79]. As described above, research on early identification and intervention in ASD has evolved rapidly during the last decade. Thus, PCPs may not always have access to the most current information. For example, they may be unaware of recent advances in early diagnosis, they may hold misconceptions about early red flags (e.g., they may erroneously assume that children with ASD never show affectionate behaviors), or they may not be familiar or feel passionate about the effectiveness of early intervention services [80].

#### **2.** Doubts about the accuracy of ASD-specific screening tests

Available ASD-specific screening tests are far from perfect. As discussed above, if the M-CHAT is administered without the follow-up interview, over-identification is likely to occur at a rate of 17:1 [47]. Several authors have emphasized the utility of second-stage autism-specific screeners in a referral setting to help prevent over-referral and effectively direct high-risk children toward comprehensive ASD evaluations [61, 81, 82]. Even though the M-CHAT follow-up interview has been developed to reduce the number of false positive screens, a feasible process for implementing this interview in the context of children's well-child visits has not been developed. In the absence of an effective second-stage screening process, PCP's may use their own clinical judgment to prevent over-referrals.

**3.** Expectations about parental reactions

Parents also express dissatisfaction with the manner in which their child's pediatrician discussed developmental concerns and/or delivered the ASD diagnosis. For example, parents report dissatisfaction if a diagnosis is made but next steps and outcomes are not discussed [26]. Similarly, most parents of children with autism express a preference for receiving a clear ASD label rather than hearing about their child's autism "tendencies" or "trends" [73]. This preference for sincere, prompt, and honest information, even if this means that the physician has to admit a level of uncertainty, can also be found in other medical conditions. For example, cancer patients reported the highest levels of satisfaction and the lowest levels of anxiety when they felt that their healthcare professional prepared them adequately for the diagnosis, when they felt they were being told "everything", when the word "cancer" was used, and when their need to discuss life expectancy had been satisfied [76]. Importantly, high levels of trust in the physician has been linked to high levels of adherence to recommended behavior change [77].

**4.1. Barriers to successful communication between healthcare provider and parents**

**1.** Limited, outdated, or incorrect information on ASD and effective interventions

passionate about the effectiveness of early intervention services [80].

In a recent survey, PCPs reported feeling less competent providing care to children with ASD compared to children with other neurodevelopmental disorders and chronic conditions [79]. As described above, research on early identification and intervention in ASD has evolved rapidly during the last decade. Thus, PCPs may not always have access to the most current information. For example, they may be unaware of recent advances in early diagnosis, they may hold misconceptions about early red flags (e.g., they may erroneously assume that children with ASD never show affectionate behaviors), or they may not be familiar or feel

effectively communicate with parents about autism.

14 Recent Advances in Autism Spectrum Disorders - Volume I

The AAP clinical practice guidelines recommend that once ASD is seriously considered (i.e., due to a failed ASD-screener or multiple risk factors) the parent is promptly educated about ASD and referred for Early Intervention services. Research on the implementation of general developmental screening suggests that referral rates for children who fail such screeners vary tremendously across providers (*M* = 61%; range: 27% to 100%; [51]). Similarly, two descriptive studies on early identification of ASD in the healthcare setting found that referral to a clinical specialist (e.g., a developmental pediatrician) is the most likely response when autism is first suspected [53, 54]. In the absence of a simultaneous referral to Early Intervention, referral to a clinical specialist can significantly delay children's access to services due to long waiting lists. In addition, the preference for referring families only to a clinical specialist reveals that, even in the presence of a failed ASD-screener, PCPs may often not feel ready to discuss autism with the child's parents. The reasons why PCPs use their own clinical judgment or uncertainty to override the results from a positive screening test are currently poorly understood [78]. This being said, considering a possible ASD-specific referral requires a delicate balancing act between the PCP's clinical judgment, tolerance for uncertainty, trust in screening tests, expectations about parental reactions, self-efficacy with regard to giving 'bad news' and confidence in the available service system. In the following we will describe select components of this tenuous balancing act, and discuss how each factor challenges the PCPs ability to

Even though timely referrals for a comprehensive ASD evaluation and Early Intervention services are important first steps, not all parents choose to comply with their pediatricians' referrals and pursue further evaluations [51, 75, 83]. Importantly, parental compliance rates with ASD-specific referrals tend to be lower in younger, and higher in older children. For example, Pierce and colleagues showed that 40% of parents refused a comprehensive followup evaluation after failing the CSBS Infant Toddler Checklist at 12 months [3]. Similarly, Pandey and colleagues reported that 37% of parents of younger children (16 to 23 months) refused a referral for a comprehensive ASD evaluation after a failed M-CHAT follow-up interview [84]. In older children (24 to 30 months), the refusal rate was only 21%. In making decisions about a child's referrals, PCPs may gauge the likelihood of a parents' compliance, and thus be more reluctant to make ASD-specific referrals for younger than for older children.

**4.** Lack of experience in delivering 'bad news' in uncertain situations

Primary care providers may be reluctant to administer population-wide screening measures for ASD if they have had little or no training in sharing bad news with patients. A review of the relevant literature in cancer has revealed that delivering difficult news can be stressful and physicians may struggle with handling their own emotions of sorrow, guilt, and feelings of failure [85]. Unsurprisingly, physicians report a desire for more training in delivering bad news [85], and physicians who have received such training have expressed increased competence in having conversations where difficult information needs to be delivered [86-88].

#### **4.2. Novel approaches to improve communication about autism with parents**

How to communicate difficult news to patients has been widely studied, particularly related to cancer. For example, Eid and colleagues [87] tested a standardized intervention to im‐ prove communication skills in hematology-oncology fellows and nurses. The fellows and nurses were tested pre-intervention via mock clinical interviews where a "patient" had to be informed of bad news concerning their cancer care. The intervention consisted of one 45-mi‐ nute interactive lecture that outlined specific methodology for delivering bad news and case scenarios to highlight proper strategies. Fellows and nurses also had the opportunity to watch and score the investigators displaying ideal as well as incorrect practices for deliver‐ ing bad news. A week after the intervention, fellows and nurses participated in another mock clinical interview. Both interviews were then scored using a fidelity checklist to meas‐ ure skills taught during the intervention. Results indicated that fellows and nurses scored higher on the post-intervention clinical interview when compared to the pre-intervention in‐ terview; qualitatively, they also reported that the intervention improved their communica‐ tion skills while delivering bad news. Similar research has demonstrated that improvements in physician communication skills are associated with improved patient outcomes, includ‐ ing reductions in patient distress [88] and increases in patient satisfaction with the treating physician [89].

Comprehensive early intervention programs, consistent with the NRC recommendations or evidence based intervention practices [92-94] are currently not widely available to families of toddlers with ASD. Significant wait-times may delay children's prompt access to services [95]. In addition, programs are also not providing services at the recommended level of in‐ tensity. In a national survey of Early Intervention Coordinators, the vast majority of re‐ spondents indicated shortages of ASD-related personnel, including behavioral therapists (89%), speech-language pathologists (82%), and occupational therapists (79%). Further, Ear‐ ly Intervention Coordinators of almost half of the reporting states (44%) indicated that chil‐

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

What We Do

17

http://dx.doi.org/10.5772/53715

Families' ability to effectively utilize intervention services has also been linked to a range of demographic variables, including race and ethnicity [9, 96], immigrant status and cultural beliefs [97, 98], language [68, 99, 100], and SES [101]. Further, many families face geographic barriers in accessing ASD diagnoses and services. Children have been shown to receive di‐ agnoses of ASD at older ages when the family lives in an area with few neurologists and psychiatrists [102]. Similarly, families in remote or rural areas often travel a great distance to

**5.1. PCP behaviors that contribute to delays between referral and onset of services**

The current chapter focuses on the gap between best practice and community implementa‐ tion with regard to early identification of children with ASD. To fully support the needs of toddlers with ASD and their families, it is important to recognize that a similar gap between 'what we *know* and *do'* also exists with regard to early intervention practices. Thus, to ensure that children with ASD have access to appropriate services, PCPs should be mindful of sev‐ eral pitfalls that may contribute to delays between referral and onset of Early Intervention

As described above, King and colleagues collaborated with 17 primary care practices to im‐ plement the AAP policy statement on developmental surveillance and screening [51]. Al‐ though a referral-tracking system is not specifically addressed in this policy statement, King and colleagues noted that more than half of the practices (9 out of 17) attempted to imple‐ ment such a system. Because most practices include multiple healthcare professionals, a clinic-wide referral-tracking system is necessary to monitor which children had been refer‐ red and where they had been referred to. On the one hand, King reported that most clinics found referral-tracking to be a "time- and labor-intensive effort that was difficult to main‐ tain over the long-term" (p. 357). On the other hand, clinics that were successful in imple‐ menting such a tracking system learned very quickly that many families didn't follow through with the recommended referrals, enabling them to develop strategies for providing additional reminders and supports. In addition, an effective referral-tracking system ena‐

dren with ASD receive 5 or fewer weekly service hours.

reach services that are not available locally [103].

**1.** Parents need to be reminded about the referrals

services.

Multi-media training materials on communicating with parents about failed ASD-screeners

Given the short history of ASD-specific screening, little research is currently available on how to effectively communicate with parents about failed ASD-specific screening tests. In recent years, at least two groups have developed multi-media training materials that sup‐ port PCPs in this area. As part of the "Learn the Signs. Act Early." campaign, the CDC de‐ veloped an in-class curriculum for current and future healthcare professionals, often presented in the context of hospital Grand Rounds (http://www.cdc.gov/ncbddd/actearly/) [65]. As part of this curriculum, learners watch and discuss video examples on how to com‐ municate with parents about concerning screening results as well as various strategies for delivering difficult news. Importantly, learners are also provided with information about the stages of grief experienced by parents of children with disabilities. Similarly, as part of a webcast series on the medical home, the Waisman Center of the University of Wisconsin-Madison developed a 10-minute webcast on sharing screening results with families (http:// www.waisman.wisc.edu/connections)[90]. The webcast covers topics such as the importance of developmental screening, understanding the difference between screening and diagnos‐ ing, and considering specific language to use when sharing concerns. It also discusses why sharing screening results can be difficult, and shares specific steps to follow when sharing screening results.

#### **5. Supporting parents between referral and onset of services**

Prompt access to Early Intervention can alter the developmental trajectory of individuals with ASD. A recent clinical trial tested the efficacy of a comprehensive developmental be‐ havioral intervention program (Early Start Denver Model) in a sample of toddlers with ASD between 18 and 30 months [91]. Results from this study revealed significant treatment ef‐ fects on children's IQ, adaptive functioning, and autism symptoms. In many ways, this com‐ prehensive treatment model for toddlers is consistent with the report of the National Research Council, which recommends that services should begin as soon as a child is sus‐ pected of having ASD and include a minimum of 25 hours a week, during which the child is actively engaged in systematically planned, and developmentally appropriate educational activity [92-94].

Comprehensive early intervention programs, consistent with the NRC recommendations or evidence based intervention practices [92-94] are currently not widely available to families of toddlers with ASD. Significant wait-times may delay children's prompt access to services [95]. In addition, programs are also not providing services at the recommended level of in‐ tensity. In a national survey of Early Intervention Coordinators, the vast majority of re‐ spondents indicated shortages of ASD-related personnel, including behavioral therapists (89%), speech-language pathologists (82%), and occupational therapists (79%). Further, Ear‐ ly Intervention Coordinators of almost half of the reporting states (44%) indicated that chil‐ dren with ASD receive 5 or fewer weekly service hours.

Families' ability to effectively utilize intervention services has also been linked to a range of demographic variables, including race and ethnicity [9, 96], immigrant status and cultural beliefs [97, 98], language [68, 99, 100], and SES [101]. Further, many families face geographic barriers in accessing ASD diagnoses and services. Children have been shown to receive di‐ agnoses of ASD at older ages when the family lives in an area with few neurologists and psychiatrists [102]. Similarly, families in remote or rural areas often travel a great distance to reach services that are not available locally [103].

#### **5.1. PCP behaviors that contribute to delays between referral and onset of services**

The current chapter focuses on the gap between best practice and community implementa‐ tion with regard to early identification of children with ASD. To fully support the needs of toddlers with ASD and their families, it is important to recognize that a similar gap between 'what we *know* and *do'* also exists with regard to early intervention practices. Thus, to ensure that children with ASD have access to appropriate services, PCPs should be mindful of sev‐ eral pitfalls that may contribute to delays between referral and onset of Early Intervention services.

**1.** Parents need to be reminded about the referrals

ing bad news. A week after the intervention, fellows and nurses participated in another mock clinical interview. Both interviews were then scored using a fidelity checklist to meas‐ ure skills taught during the intervention. Results indicated that fellows and nurses scored higher on the post-intervention clinical interview when compared to the pre-intervention in‐ terview; qualitatively, they also reported that the intervention improved their communica‐ tion skills while delivering bad news. Similar research has demonstrated that improvements in physician communication skills are associated with improved patient outcomes, includ‐ ing reductions in patient distress [88] and increases in patient satisfaction with the treating

Multi-media training materials on communicating with parents about failed ASD-screeners Given the short history of ASD-specific screening, little research is currently available on how to effectively communicate with parents about failed ASD-specific screening tests. In recent years, at least two groups have developed multi-media training materials that sup‐ port PCPs in this area. As part of the "Learn the Signs. Act Early." campaign, the CDC de‐ veloped an in-class curriculum for current and future healthcare professionals, often presented in the context of hospital Grand Rounds (http://www.cdc.gov/ncbddd/actearly/) [65]. As part of this curriculum, learners watch and discuss video examples on how to com‐ municate with parents about concerning screening results as well as various strategies for delivering difficult news. Importantly, learners are also provided with information about the stages of grief experienced by parents of children with disabilities. Similarly, as part of a webcast series on the medical home, the Waisman Center of the University of Wisconsin-Madison developed a 10-minute webcast on sharing screening results with families (http:// www.waisman.wisc.edu/connections)[90]. The webcast covers topics such as the importance of developmental screening, understanding the difference between screening and diagnos‐ ing, and considering specific language to use when sharing concerns. It also discusses why sharing screening results can be difficult, and shares specific steps to follow when sharing

**5. Supporting parents between referral and onset of services**

Prompt access to Early Intervention can alter the developmental trajectory of individuals with ASD. A recent clinical trial tested the efficacy of a comprehensive developmental be‐ havioral intervention program (Early Start Denver Model) in a sample of toddlers with ASD between 18 and 30 months [91]. Results from this study revealed significant treatment ef‐ fects on children's IQ, adaptive functioning, and autism symptoms. In many ways, this com‐ prehensive treatment model for toddlers is consistent with the report of the National Research Council, which recommends that services should begin as soon as a child is sus‐ pected of having ASD and include a minimum of 25 hours a week, during which the child is actively engaged in systematically planned, and developmentally appropriate educational

physician [89].

16 Recent Advances in Autism Spectrum Disorders - Volume I

screening results.

activity [92-94].

As described above, King and colleagues collaborated with 17 primary care practices to im‐ plement the AAP policy statement on developmental surveillance and screening [51]. Al‐ though a referral-tracking system is not specifically addressed in this policy statement, King and colleagues noted that more than half of the practices (9 out of 17) attempted to imple‐ ment such a system. Because most practices include multiple healthcare professionals, a clinic-wide referral-tracking system is necessary to monitor which children had been refer‐ red and where they had been referred to. On the one hand, King reported that most clinics found referral-tracking to be a "time- and labor-intensive effort that was difficult to main‐ tain over the long-term" (p. 357). On the other hand, clinics that were successful in imple‐ menting such a tracking system learned very quickly that many families didn't follow through with the recommended referrals, enabling them to develop strategies for providing additional reminders and supports. In addition, an effective referral-tracking system ena‐ bled the physicians to develop better communication with local referral resources and re‐ ceive more consistent feedback on the children they referred.

services by assisting patients and their families to navigate through the healthcare delivery system [105]. Ideally, patient navigators are familiar with the specific healthcare system through which the patient must navigate, culturally attuned to the patient, and connected to decision makers in the healthcare system. Patient navigation has the potential to improve the continuity of care [106], promote compliance with recommended referrals by fostering trust between patient and healthcare providers [107], and facilitate access to evaluations and services in underserved populations by connecting them to resources most appropriate for each patient's individual needs [107]. Although a successful patient navigation program bears significant promise for promoting early identification of ASD, such a program has not been

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

What We Do

19

http://dx.doi.org/10.5772/53715

During the last decade, research on early identification, diagnosis and intervention for toddlers with ASD has made tremendous progress. Moreover, during recent years, the topic of community implementation of best practice strategies has risen to the forefront. In order to develop a sustainable service infrastructure for toddlers with ASD, systems for public awareness, early identification, and early intervention need to be scaled up in tandem with updated priorities in public policy and funding allocation. Eventually, efforts to increase early identification of children with ASD will only be successful if identified children have access

Preparation of this manuscript was supported by a grant from The FAR Fund. The themes of this chapter were informed by a public policy roundtable entitled 'Toddlers with Autism in New York City', held at the Roosevelt House Public Policy Institute at Hunter College in March 2011. Roundtable participants included: Peter H. Bell, Autism Speaks; Alice S. Carter, Univer‐ sity of Massachusetts at Boston; Susan L. Hyman, University of Rochester; Michael Ganz, Harvard University; Barbara Kalmanson, ICDL Graduate School; Gary Mesibov, University of North Carolina at Chapel Hill; Donna M. Noyes-Grosser, NYS Department of Health; Marilyn Rubinstein, New York Presbyterian Hospital; Laura Slatkin, New York Center for Autism; Wendy Stone, University of Washington; Fred R. Volkmar, Yale University; Amy Wetherby, Florida State University. Information about the event is available online:

, Meghan Swanson3

and Emily Hotez4

implemented to date.

**6. Conclusion**

to effective Early Intervention services.

www.hunter.cuny.edu/autismroundtable.

**Acknowledgements**

**Author details**

Michael Siller1\*, Lindee Morgan2

**2.** Parents need to be educated about ASD

An additional lesson learned by clinics implementing an effective referral-tracking system was that many families did not seem to understand the reason for their child's referral [51]. The parents' limited understanding is concerning, not only because it reduces the chances that the parent will follow through with the pediatrician's referral but also because a com‐ prehensive ASD evaluation will progress more efficiently if parents are familiar with the be‐ havioral characteristics of children with ASD and if they can report accurately about their child's behavioral red flags of ASD [6]. Finally, by educating the parents about ASD at the time when the referral is made, families have the opportunity to prepare themselves emo‐ tionally for the evaluation and the possibility that their child may have autism.

**3.** Early Intervention administrators need to be informed that ASD is suspected

In determining eligibility for Early Intervention services, evaluations may cover multiple areas of development, including (1) physical, including vision and hearing, (2) cognitive, (3) communication, (4) social or emotional, and/or (5) adaptive. The developmental profile of many toddlers with ASD is strikingly uneven with possible strengths in physical and cogni‐ tive development and specific delays in several social and communication milestones. Given that ASD symptoms may be observed in the absence of global developmental delays, it is important that the evaluation team is specifically charged with the task to 'rule out ASD'. If ASD symptoms are not specifically addressed during the evaluation, toddlers with ASD who also have strengths in global development may be missed and as a result may not be considered eligible for services.

#### **5.2. Novel approaches to prevent delays between referral and onset of services**

Several recent projects aiming to implement general developmental or autism-specific screening in the primary care setting found it necessary to create a dedicated staff position, a developmental or autism specialist, to provide second-stage screening services to prevent over-referral, and/or information, support, resources and referrals to families identified with developmental concerns [61, 104]. Other projects provided families with access to a develop‐ mental/autism specialist by creating a partnership with a local research group [3, 56]. Al‐ though this is a rather novel approach in the context of developmental and autism screening, the idea of a patient navigation program has been popular in other medical fields for several decades.

#### *5.2.1. The patient navigation program*

The American Cancer Society supported the nation's first patient navigation program in 1990 at the Harlem Hospital Center. Founded by Dr. Harold Freeman, patient navigation originally aimed to promote access to timely cancer diagnosis and treatment and to ensure coordinated services by assisting patients and their families to navigate through the healthcare delivery system [105]. Ideally, patient navigators are familiar with the specific healthcare system through which the patient must navigate, culturally attuned to the patient, and connected to decision makers in the healthcare system. Patient navigation has the potential to improve the continuity of care [106], promote compliance with recommended referrals by fostering trust between patient and healthcare providers [107], and facilitate access to evaluations and services in underserved populations by connecting them to resources most appropriate for each patient's individual needs [107]. Although a successful patient navigation program bears significant promise for promoting early identification of ASD, such a program has not been implemented to date.
