Service Coordinators’ Perceptions of Autism-Specific Screening and Referral Practices in Early Intervention

Abstract

Service coordinators in a statewide early intervention program were surveyed to develop an understanding of screening and referral practices to identify children on the autism spectrum. Quantitative and qualitative data summarizing autism-specific screening and referral practices are reported. More than 50% of the respondents reported that they had never received a referral from a physician or another early intervention provider because a child has failed an autism-specific screening. While service coordinators identified that early intervention providers have a role in conducting autism-specific screening, more than 50% of the respondents indicated that they do not see autism-specific screening completed in early intervention settings. More than 80% of the respondents identified “a lack of knowledge” as the most significant barrier to autism-specific screening. Together, these findings suggest that early intervention providers may benefit from professional development that imparts knowledge, teaches skills, and addresses potential concerns of parents related to autism.

Keywords

screening assessment autism spectrum disorder (ASD)disability populations personnel survey methodologies descriptive studies research methodologies

The increasing prevalence of autism spectrum disorders (ASD) is an urgent public health concern (Centers for Disease Control and Prevention, 2012). The number of individuals receiving services for ASD has steadily increased since the 1990s, and the most recent data suggest that approximately 1 in 88 children is identified as having an ASD (Centers for Disease Control and Prevention, 2012). Awareness of ASD has also increased (Centers for Disease Control and Prevention, 2009) due to the Internet, movies, and other media. As a result, health care providers and the general public alike have increased access to information about ASD (Johnson, Myers, & the Council on Children With Disabilities, 2007). Despite this increased awareness, many children are not diagnosed with ASD until they approach school age (Mandell, Novak, & Zubritsky, 2005; Shattuck et al., 2009).

In a study examining the prevalence of autism, the Centers for Disease Control and Prevention (2009) found that the signs and symptoms of ASD are generally evident before the age of 3. While reliable screening and diagnostic instruments are available for early identification of ASD in children as young as 18 months (Centers for Disease Control and Prevention, 2009), a gap exists between the ages of possible and actual ASD identification (Mandell et al., 2005; Shattuck et al., 2009). For example, many parents report developmental concerns before 36 months, but the average age of diagnosis of ASD in general is 4 years 5 months (Centers for Disease Control and Prevention, 2009). Although the age of diagnosis has decreased from previous years, children diagnosed at 4 years 5 months have lost time when crucial early intervention services and supports could have been delivered (Mandell et al., 2005; Shattuck et al., 2009). This gap highlights the ineffectiveness of current screening practices in the early identification of ASD (Shattucket al., 2009).

When children with ASD are identified, they are eligible to receive services through a variety of programs. Children diagnosed with or at risk for developmental disabilities, below the age of 3, are eligible to receive services through early intervention programs funded by Part C of the Individuals With Disabilities Education Improvement Act (IDEA, 2004). Parents, physicians, and therapy providers can refer a child to early intervention programs (Stahmer & Mandell, 2007). To facilitate early referral, the American Academy of Pediatrics (AAP) developed an algorithm that recommends the use of standardized developmental screening instruments at well-child visits. According to the AAP, developmental screening should be conducted at 9-, 18-, and 30-month visits (AAP, 2006). Autism-specific screening should occur at 18- and 24-month visits regardless of parental concerns about their child’s development (Gupta et al., 2007). Autism-specific screening is essential in the early identification of autism because global developmental screening does not adequately identify children at risk for ASD (Mandell et al., 2005). Several standardized autism-specific screening instruments exist to aid physicians in early identification of ASD, such as the Modified Checklist for Autism in Toddlers (Dumont-Mathieu & Fein, 2005; Robins, 2008; Robins, Fein, Barton, & Green, 2001) and the Communication and Symbolic Behavior Scales: Developmental Profile (Wetherby & Prizant, 2002).

Although the AAP recommendations about autism-specific screening have been disseminated, these guidelines are relatively new. Many studies investigating physicians’ use of global developmental screening instruments have been conducted; however, there are far fewer studies investigating physicians’ use of autism-specific screening instruments. A 2006 survey of Maryland and Delaware general pediatricians found that 82% of respondents routinely screened for developmental delay, but only 8% reported routine screening for ASD (Dosreis, Weiner, Johnson, & Newschaffer, 2006). Similarly, in a 2004 survey of primary care pediatricians, 44% reported caring for at least 10 children with ASD, but only 8% reported routine screening for ASD (Johnson et al., 2007).

Given the findings that routine screening for ASD may not be occurring, it is not surprising that many children are identified after they are eligible for early intervention services (Pringle, Colpe, Blumberg, Avila, & Kogan, 2012). When children are receiving early intervention services, but are not identified on the spectrum, they are less likely to receive targeted autism-specific interventions. Because evidence-based autism-specific interventions are demonstrating efficacy in improving the health and well-being of children with ASD and their families, increased efforts should be made to identify children with ASD before they are 3 years of age (Centers for Disease Control and Prevention, 2009; Johnson et al., 2007).

Early identification combined with intense and specific intervention leads to improved outcomes for children with ASD (Filipek et al., 2000; Stahmer & Mandell, 2007; Virués-Ortega, 2010). For example, Virués-Ortega (2010) conducted a meta-analysis of studies examining applied behavior analytic (ABA) interventions for autism during early childhood and found that language skill development improved in response to intervention duration and adaptive behaviors were more responsive to intervention intensity. In addition, Dawson et al. (2010) completed a randomized control trial comparing the Early Start Denver Model (ESDM) and routine early intervention services. Their findings indicated that toddlers receiving the ESDM intervention had significant improvements in intelligence, language, and adaptive behavior when compared with routine services. Early identification is imperative, because it provides a means for families to access the programs that provide appropriate and specialized services, as well as family supports (Stahmer & Mandell, 2007). Early identification, therefore, is the first step to detecting a disability and promoting access to services.

Service coordinators are often the first point of contact for children who may benefit from services provided through the early intervention system (Filipek et al., 2000). The role of the service coordinator in Part C early intervention programs is to assist the family with obtaining access to the necessary services for their child (Department of Education, 2011). Therefore, service coordinators can play a vital role in assuring that children are screened for autism and are referred for services and supports. As the prevalence of ASD continues to increase, it is imperative that members of the early intervention team are able to identify the early signs of ASD and make appropriate referrals for evidence-based services. Because the service coordinator has a significant role in assisting families to obtain needed services, we wanted to better understand their perceptions of autism-specific screening practices in a Midwestern state. In addition, we investigated perceived barriers to autism-specific screening.

Method

A mailed questionnaire was used to obtain information related to the study objectives from practicing service coordinators. The Institutional Review Board at the University of Illinois at Chicago approved this study.

Participants

The research participants were early intervention service coordinators with active credentials currently employed by a Child and Family Connections (CFCs) office in a Midwestern state. CFCs are responsible for early intervention intake activities and insuring that all referrals to the early intervention system are responded to in a timely fashion. Primary referral sources to the CFCs for early intervention services include parents, child care programs, educational agencies, public health agencies, hospitals including perinatal and postnatal care facilities, physicians, or other social service agencies. There are 25 CFCs in the state, and each CFC is responsible for implementation of the Early Intervention Services System within their specific geographic region of the state. All CFCs are accountable to the state’s Bureau of Early Intervention. All staff employed as service coordinators or parent liaisons by a CFC are required to obtain an early intervention credential prior to providing services to families. To be a credentialed service coordinator, an individual must have a bachelor’s degree in a health-related field or have an associate’s degree in a health-related field and 2 years of experience serving children and families. For full credentialing, service coordinators must complete an online training covering the procedures and philosophy of the CFC. The average length of service of the participants was 2.12 years (range = 1–5 years). Participants identified the CFC office with which they were affiliated. Overall, participants served children and families across the southern, middle, and northern parts of the state. The majority, nearly 75%, was from the Chicago/Cook County region of the state. This region has the greatest number of CFC offices and employs the largest number of service coordinators in the state.

Procedure

Each of the 25 CFC managers throughout the state received a letter that informed them about the study and requested that they distribute survey packets to the credentialed service coordinators employed at their CFC. The CFC managers were asked to complete and return the letter of support by mail, e-mail, or fax. Fifteen of the 25 CFC managers returned a signed letter indicating their agreement to invite the service coordinators employed at their location to complete the survey and included the number of service coordinators employed at their CFC. Ten managers did not respond to the invitation to participate in the study. Based on the number of service coordinators provided by the CFC managers, the total number of survey packets mailed to respective service coordinators was 282. Each CFC office was mailed individual packets for each service coordinator who met the eligibility criteria (active, full, or temporary early intervention credential and current employment). The packet contained an introductory letter of invitation to take the survey; the survey itself; a self-addressed, stamped return envelope; and a US$5 Starbucks gift card as a small token of appreciation. Participation was completely voluntary, and service coordinators could keep the gift card even if the survey was not returned. The introductory letter also informed participants that completing the survey provided consent to participate in the research study. Of the 282 survey packets that were distributed, a total of 230 surveys were returned for a response rate of 82%.

The initial version of the self-administered mail survey questionnaire on autism screening and referral practices was drafted by two occupational therapy graduate students who were enrolled in a Leadership Education in Neurodevelopmental and Related Disabilities (LEND) traineeship program. The principal investigators (faculty) and key stakeholders (a CFC manager and the state’s Bureau of Early Intervention coordinator) reviewed a draft of the survey. Modifications were made based on their feedback, and a second version of the survey was drafted. The second draft was distributed to four service coordinators for review. Changes were made based on the service coordinators’ feedback. Specifically, we clarified terminology (screening versus diagnosing) used throughout the survey and ensured clear questions and responses.

To create a common frame of reference for the survey, participants were provided with the following definition of screening practices. “For the purposes of this survey, screening is defined as a brief standardized assessment designed to identify children who should receive a more intensive evaluation or who may be at risk for possible developmental delays. Screening does not include making a diagnosis and does not mean or refer to an early intervention medical diagnostic evaluation.” Participants were instructed to consider this definition as they were answering the survey questions.

The survey was divided into three sections. The first section included questions about the respondents’ years of experience as a service coordinator and the number of their specific CFC office. The second section of the survey asked about referral experiences and whether the service coordinators received a referral from a physician or other early intervention provider when a child failed an autism-specific screening. The third and final section of the survey asked participants to indicate the extent to which they either agreed or disagreed that specific items were barriers to conducting autism-specific screenings.

The survey contained 16 forced-choice questions and two areas where they could write in comments. Respondents could write in comments after the following question: “If you do not think that early intervention providers should conduct autism-specific screening, why should early intervention providers not conduct autism-specific screening?” In addition, respondents could write in comments at the end of the survey.

Once the survey packets were mailed to the CFC manager, a follow-up e-mail or telephone call was made to ask those CFC managers who had not responded to consider participation. By 2 months after the initial contact with CFC managers to request their participation, no additional letters of support were being received. One month after the final packet of surveys was mailed, questionnaire accrual ceased and the survey was closed.

Questionnaire answers were coded, and the data were entered into an Excel spreadsheet. Data were coded by one research assistant and then reviewed and entered intothe excel spreadsheet by another assistant as a way to double check data coding. Frequency and percentages were tabulated using Excel. Due to missing data or questions where participants did not respond, percentages were calculated using the number of participants that actually responded to each question. After all of the data had been coded and entered, the coding and entry was double checked again by a research assistant to ensure accuracy.

Qualitative comments from the following question were typed verbatim into an excel spreadsheet: “If you do not think that early intervention providers should conduct autism-specific screening, why should early intervention providers not conduct autism-specific screening?” A team of four research staff members completed a three-stage content analysis (Fowler, 2009). The first stage of the interactive process included independent identification of categories by each member of the research team. Team members then met and decided upon coding categories used in the analysis. During the second stage, the research team independently recoded all of the comments based on the defined category structure. During the second stage, each member shared his or her category codes for the responses and discussed the data that did not fit into a particular category. The research team also discussed if there was a lack of agreement about category assignment. Any outlying comments were labeled as miscellaneous, and the research team reviewed and determined whether another category was needed. During the third stage, each research team member verified the categories he or she coded and a new category was developed for the miscellaneous comments. This interactive and iterative analysis process facilitated an exhaustive list of mutually exclusive category codes (Fowler, 2009).

Results

Quantitative Data

The purpose of the survey was to better understand whether service coordinators report receiving referrals from physicians or other early intervention providers because a child failed an autism-specific screening and to identify barriers to autism-specific screening in a statewide early intervention program.

Referral practices

Percentages summarizing autism-specific referral practices are reported. To better understand if service coordinators receive referrals from physicians or other early intervention providers due to a failed autism-specific screening, participants were asked a series of questions. Sixty-eight percent of the respondents had never received a referral from a physician, and 83% indicated that they had never received a referral from another early intervention provider. Finally, participants were asked to identify the discipline most likely to refer a child for a failed autism-specific screening. Service coordinators indicated that they were most likely to receive a referral from developmental therapists or speech-language pathologists.

Screening practices

To better understand the autism-specific screening practices reported by service coordinators, frequency data are described. Service coordinators responded to a series of four questions. First, we asked which instruments are routinely used in early intervention practice. Figure 1 depicts the frequency of the type of autism-specific screening instrument used in early intervention settings where the participants worked.

Figure 1.

Autism-specific screening instruments routinely used in early intervention practice.

Second, we asked the coordinators to identify who should conduct autism-specific screening. Participants could mark all responses that applied. A majority of participants, more than 90%, indicated that physicians should conduct autism-specific screening, and 64% of the participants also indicated that early intervention professionals should conduct screening.

Third, for the service coordinators who responded that early intervention providers should not conduct autism-specific screening, we asked for clarification. Service coordinators were asked to identify reasons why they thought early intervention providers should not conduct autism-specific screening. Respondents could mark all answers that applied, and they could write in comments. The frequency data provided in Figure 2 indicate reasons why early intervention providers should not conduct autism-specific screening.

Figure 2.

Reasons why early intervention providers should not conduct autism-specific screening.

Fourth, the service coordinators were asked to rate whether they felt children were receiving the appropriate amount of autism-specific screenings. Although 20% of the participants indicated that children received the appropriate number of screenings, 67% of the participants indicated that children were significantly or somewhat under screened.

Barriers to autism-specific screening

To better understand the barriers to conducting autism-specific screening, frequency data summarizing identified barriers are presented herein. Service coordinators responded to a series of five questions related to barriers. Each question required respondents to mark whether they strongly disagreed, disagreed, agreed, or strongly agreed to each statement. To capture whether service coordinators either agreed or disagreed that a barrier existed, responses were collapsed to disagree or agree categories. Figure 3 illustrates that lack of knowledge about conducting screening is a significant barrier.

Figure 3.

Barriers to autism-specific screening.

Qualitative Findings

Qualitative analysis of the responses to the question “If you do not think that early intervention providers should conduct autism-specific screening, why should early intervention providers not conduct autism-specific screening?” revealed two main categories, and these were (a) barriers to conducting autism-specific screening and (b) reasons to conduct autism-specific screening. Even though service coordinators were asked to indicate why early intervention providers should not perform autism-specific screening, many comments identified why early intervention providers should conduct autism-specific screening. These two broad categories were broken down into more discrete subcategories that represented unique barriers to autism-specific screening and reasons to complete autism-specific screening in early intervention settings. Table 1 depicts the categories with related quotes.

Table 1.

Thematic Categories Related to Autism-Specific Screening in Early Intervention Settings.

Category	Thematic category	Responses
Q1. If you do not think that early intervention providers should conduct autism-specific screening, why should early intervention providers not conduct autism-specific screening?
Barriers
B1	Parental stress	“I believe that if providers are able to screen for autism it will only cause more stress and confusion to families.” “Some parents in the beginning are not ready to hear about a possible autism diagnosis.”
B2	More training	“Service coordinators are not sufficiently trained in autism. I would be more open and eager to maybe conduct screenings if I was provided with more autism seminars, training, so I can strengthen my own understanding and background on autism.”
B3	Confusion between screening and diagnostic procedures	“I feel that only a physician should make a decision like that. A provider could ask for a medical diagnostic exam if they felt like a child may be autistic but should never make that judgment.”
B4	Confusion about EI purpose and services	“A diagnosis of autism or ASD will not change our IFSP goals, so for our purposes it is unnecessary. We treat the child’s developmental needs, not his/her diagnosis.”
B5	Lack qualifications and have anxiety	“Don’t feel providers are qualified to conduct screening. Even those providers that are qualified are not always available for the child in question. Therefore, you open it up to having non-qualified providers doing the screenings.” “As a service coordinator I don’t feel that I would be able to answer parent’s questions that would rise & I would be expected by the parents to give them answers.”
Reasons to screen
R1	Parental concern	“There is an increasing number of parents concerned with autism no matter the age of their child. An autism specific tool would be helpful for not only providers but service coordinators as well to either help ease mom’s mind or let the family know we also have concerns and make referrals as necessary.”
R2	Global support for autism-specific screening	“I believe they should conduct autism-specific screenings as a measure to ensure toddlers are not missed prior to entering the school system.”

Note. EI = early intervention; ASD = autism spectrum disorder; IFSP = Individualized Family Service Plan.

Discussion

Our survey is unique in that service coordinators provided data about autism-specific screening and referral practices of children enrolled in Part C early intervention programs. The findings suggest that the early intervention service coordinators who participated in the study are receiving a limited number of referrals from physicians or early intervention providers based on the results of autism-specific screening. We also found that service coordinators feel physicians and early intervention providers should be conducting autism-specific screening; however, they reported that barriers to autism-specific screening exist, including lack of knowledge about autism and autism-specific screening instruments. In addition, the participants reported a lack of knowledge about effectively communicating the results of the screening without increasing parental stress. Based on this information, there seems to be a need for additional training on how early intervention providers, especially professionals in the allied health fields, can utilize existing screening instruments and how they can communicate results to parents.

The results show that a small number of service coordinators feel that early intervention providers should be conducting these autism-specific screenings. Early intervention providers may have frequent and early contact with families of children exhibiting signs of ASD but who have not been identified (Filipek et al., 2000). Even though early intervention providers are frontline service professionals, 83% of participants in our survey reported they had never received a referral from another early intervention provider based on the results of an autism-specific screening.

Related to the questions about training, the service coordinator reports are consistent with results reported from a recent study in which pediatric allied health professionals were surveyed (Self, Coufal, & Parham, 2010). Self et al. (2010) found that more than half of the survey respondents had not been trained in characteristics of ASD or ASD-specific screening procedures during their preprofessional education. Although the Child Neurology Society of the American Academy of Neurology (Filipek et al., 2000) espouses that all health care professionals working with young children should be prepared to identify the signs and symptoms of ASD, additional training is needed to translate knowledge about the early identification of autism into practice. If health care and early intervention providers are not receiving this training during their preservice education, opportunities to gain additional preparation about ASD and autism-specific screening need to be available post-graduation.

While preservice training may guide practitioners in autism-specific screening and referral, the benefits of early identification of autism are currently under consideration. Al-Qabandi, Gorter, and Rosenbaum (2011) conducted a review of the current literature regarding autism-specific screening, referral, and interventions. They conclude that autism-specific screening does greater harm than good given that there is a lack of effective screening instruments and evidence-based interventions. Although this review raised interesting points regarding the need for additional research, there is preliminary evidence indicating that early diagnosis of autism does occur following screening (Oosterling et al., 2010) and that parents use the information about an early diagnosis to seek services for their child (Oosterling et al., 2010). Furthermore, research related to intensive behavioral interventions are demonstrating positive outcomes related to improving intelligence, communication, and adaptive behaviors (Dawson et al., 2010; Virués-Ortega, 2010). Therefore, the literature does not appear to support Al-Qabandi et al.’s assertion that autism-specific screening does in fact cause greater harm than good.

Although our survey showed that service coordinators felt autism-specific screenings should occur, they also identified that screening was not their responsibility. This is understandable given that Part C guidelines indicate that service coordinators are responsible for assisting families with access to and coordination of services that will enhance developmental outcomes (Department of Education, 2011). It is noteworthy, however, that certain published autism-specific screening instruments are available for use by professionals who are knowledgeable about development and standardized testing procedures (Robins, Fein, & Barton, 1999). If early intervention providers in the allied health professions (occupational, physical therapists, and speech-language pathologists) are provided with tailored information that strengthens their knowledge base about ASD and autism-specific screening, then there may be an increase in autism-specific screenings in early intervention settings. Ideally, one member of the early intervention team should be well versed in conducting and interpreting the results of an autism-specific screening. The service coordinator, then, could help parents obtain the necessary diagnostic services.

Limitations

The findings of this study are limited and cannot be generalized outside of the state where the data were collected given potential differences in early intervention systems, the lack of random sampling, and local attitudes toward early diagnosis, screening, and referral practices. In addition, there is a lack of data regarding participant demographics, including whether the service coordinators engaged in additional training about autism. The shortened length of time that the participants spent in the service coordination role may also have led to confusion about autism-specific referral and screening practices. Even though we attempted to ameliorate the confusion between “screening” and “diagnosis” by clearly defining each on our survey itself, there was still apparent confusion about the two words as evidenced by the responses that were received. Service coordinators often commented that only physicians are able to make an autism diagnosis when we asked about screening practices. The confusion between screening and diagnosing may have affected our results if respondents thought we were asking who should diagnose autism, when we were truly asking who should screen for autism. It also may be that service coordinators do not know the difference between screening and diagnostic processes. Finally, it is difficult to ascertain whether the respondents answered the knowledge and skills questions based on their own knowledge and skills or based on their perceptions of other service coordinators’ knowledge and skills.

Future Research

Future research should investigate whether statewide Part C guidelines impact autism-specific screening and referral practices. In addition, future research could determine best practices for developing family–professional partnerships especially related to communicating screening results to parents, and when assisting parents with obtaining diagnostic services. The effectiveness of using health literacy strategies when communicating autism-specific screening results still needs to be determined. Our survey results suggest that there is a need for training on autism screening instruments, how to utilize them, and what to do with the results. Further research may investigate potential training opportunities as well as resources that could be provided to physicians and early intervention providers to make the screening and referral process easier.

Footnotes

Acknowledgements

We extend our gratitude to Jessica Thompson for her assistance with manuscript preparation.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported in part by the College of Applied Health Sciences at the University of Illinois at Chicago and the Maternal and Child Health Bureau, through the Illinois LEND Project.

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