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Autism Spectrum Disorder Early Screening Practices: A Survey of Physicians
Abstract
The American Academy of Pediatrics (AAP) released a policy statement in 2007 urging physicians to screen for autism spectrum disorder (ASD) at 18 and 24 months. This study sought to identify the screening practices of pediatricians and family physicians (FPs) in following the AAP guidelines for ASD. A survey was mailed to 1,500 pediatricians and FPs in Kansas, Oklahoma, and Iowa. A total of 481 participants (32%) returned surveys. Results revealed 66 (17%) of the respondents routinely screened for ASD according to AAP guidelines and 162 (41%) respondents screened for ASD but did not follow the guidelines. Pediatricians were more likely to screen for ASD than were FPs. Respondents' pre-professional education in ASD was significantly associated with their tendency to routinely screen and be confident identifying warning signs of ASD. When physicians administer ASD-specific screenings and identify early signs, they can put children and families on the right path for receiving desperately needed services.
... Survey data reveals, however, many pediatricians and family physicians do not screen children for ASD in accordance with the AAP guidelines [7]. Barriers identified by physicians to providing these services include, but are not limited to, a preference for relying on clinical observations, unfamiliarity with ASDspecific screening tools, limited time, inadequate reimbursement, and less than adequate ASD preprofessional education [7]. ...
... Survey data reveals, however, many pediatricians and family physicians do not screen children for ASD in accordance with the AAP guidelines [7]. Barriers identified by physicians to providing these services include, but are not limited to, a preference for relying on clinical observations, unfamiliarity with ASDspecific screening tools, limited time, inadequate reimbursement, and less than adequate ASD preprofessional education [7]. Consequently, children are not being diagnosed until 4-6 years of age, which means they might not be getting the help they need. ...
... Yet, over half of the respondents reported that they were not comfortable conducting an ASD-specific screening, nor did they feel they had been adequately trained to do so. This result corresponded with other studies that sought to determine ASD screening barriers among pediatric providers [4], [7]. For these participants, it seemed that regardless of the strong knowledge base they had relative to the characteristics of ASD, they were not comfortable conducting an ASD-specific screening without targeted training. ...
... The American Academy of Pediatrics (AAP) and the Centers for Disease Control (CDC) first recommended universal autism screenings in 2007, during all regularly scheduled checkups at 18 and 24 months (CDC, 2018), and this recommendation remains active in 2019. Nonetheless, there are significant barriers to autism-specific screening for young children (Fenikile, Ellerbeck, Filippi, & Daley, 2015;Self, Parham, & Rajagopalan, 2015), as well as significant disparities in the rates of parent-centered general developmental screening among health-care providers (Bethell, Reuland, Schor, Abrahms, & Halfon, 2011). ...
... Standardized screening can help facilitate this process (Herlihy et al., 2014), but insufficient and inconsistent screening and follow up is a significant challenge. In fact, a survey of 481 pediatricians revealed that only 17% screened for autism according to the guidelines and 41% screened for autism, but did not follow the guidelines (Self et al., 2015). This suggests that 42% of the pediatricians surveyed did not screen for autism at all. ...
... In regard to autism-specific screening, a recent study by Monteiro et al. (2019) found that even when high rates of autism-specific screening was carried out among primary care providers, only 31% of children who screened at risk were referred to a specialist for additional evaluation. In addition, the consistent use of standardized tools for screening autism continues to be a challenge among health-care professionals (Fenikile et al., 2015;James et al., 2014;Self et al., 2015). While health-care professionals typically have education and training in the use of screening and assessment tools for evaluation, these studies suggest there are still some significant gaps in the awareness and use of autism-specific screening tools, as well as in the implementation of timely referrals. ...
The average diagnosis of autism in the United States is after 4 years of age, even though a reliable diagnosis can be obtained as early as 2 years of age. Early identification of autism can help facilitate access to early intervention, yet many children experience significant delays in receiving a diagnosis and intervention. Various factors contribute to these challenges, including a lack of training among health-care providers and socioeconomic factors among families of young children. Community-based screening is one potential method to help address the need for early identification of children with autism. Some studies indicate that childcare workers can perform screenings for autism with minimal support. Occupational therapists frequently receive referrals for children with autism, but there is a lack of research on the role of interprofessional collaboration with early childcare providers to facilitate timely screening and referrals. The primary focus of this study is to determine the current practice of early childcare providers regarding developmental and autism-specific screening and referral practices within central Michigan. A total of 80 early childcare providers in central Michigan completed a quantitative survey. Results indicate that most early childcare providers are utilizing developmental screening tools such as the Ages and Stages Questionnaire, but only two participants report the use of autism specific screening tools and most did not feel prepared to assist with referrals for this population. Occupational therapists in early intervention have the opportunity and skill set to collaborate with early childhood professionals to facilitate the timely and appropriate use of screening tools for early identification and referrals for children with autism.
... However, the screening of ASD in young children is yet to be made compulsory in most countries, and is very much dependent on the ASD knowledge that the medical service providers are equipped with. For example, in an American interstate study conducted by Self et al. (2015), it was found that only 30% of family physicians in Kansas, Oklahoma, and Iowa routinely screened for ASD. This low percentage is worrisome as family physicians are expected to be the forefront medical consultants to identify children with ASD (Self et al. 2015). ...
... For example, in an American interstate study conducted by Self et al. (2015), it was found that only 30% of family physicians in Kansas, Oklahoma, and Iowa routinely screened for ASD. This low percentage is worrisome as family physicians are expected to be the forefront medical consultants to identify children with ASD (Self et al. 2015). Pertaining to this, the family physicians' tendency to perform ASD screening was found to be significantly associated with their pre-service training in ASD and their perceived efficacy to identify ASD symptoms (Self et al. 2015). ...
... This low percentage is worrisome as family physicians are expected to be the forefront medical consultants to identify children with ASD (Self et al. 2015). Pertaining to this, the family physicians' tendency to perform ASD screening was found to be significantly associated with their pre-service training in ASD and their perceived efficacy to identify ASD symptoms (Self et al. 2015). ...
Objectives: This study aimed to investigate the perception, awareness, societal attitude, and knowledge about Autism Spectrum Disorder (ASD) in Malaysian medical students.
Methods: An exploratory survey was conducted with 83 medical students in Malaysia. In the survey, the medical students were required to rate their perception, awareness, societal attitude, and their recognition of ASD symptoms.
Results: The results showed the senior medical students had increased knowledge about ASD symptoms compared to the juniors, but there was no clear indicator that they had obtained the knowledge through formal training. Specifically, the medical students could better identify symptoms related to restrictive and fixation behavioral patterns than social communicative deficits. While considering the effects of societal attitude, year of study, perception about ASD course and other demographic variables, the year of study emerged as the sole predictor of the medical students’ knowledge about ASD.
Conclusion: The findings from this study provided evidence for the need of compulsory training on ASD in medical schools in improve the knowledge and skills of prospective medical practitioners to identify individuals with ASD. Such effort is fundamental for the early identification and intervention of ASD in developing countries such as Malaysia.
... Real-world challenges in adhering to best-practice clinical guidelines are likely the result of multiple intersecting factors. In general, PCPs report a lack of prior training in identification, diagnosis, and medical care of children with autism (Mazurek, Harkins, et al., 2020;Self et al., 2015), and many PCPs lack specific knowledge of autism screening tools and practices (Carbone et al., 2013;Fenikilé et al., 2015). In a study of 114 PCPs practicing across 14 states, most (81%) reported that their lack of knowledge of autism resources was a key barrier to caring for autistic patients, and many felt that a better understanding of community service systems would be particularly helpful (Mazurek, Harkins, et al., 2020). ...
... This ranged from improved self-efficacy in autism screening and identification, to greater perceived ability in providing comprehensive ongoing support and referrals. This is an important finding, particularly since low self-efficacy has been repeatedly identified as a critical provider-level barrier to care for children with autism (Carbone et al., 2013;Mazurek, Harkins, et al., 2020;Self et al., 2015). These results are also highly consistent with findings from previous studies of ECHO Autism (Mazurek et al., , 2019. ...
Children with autism from underserved communities face complex system-, provider-, and family-level barriers to accessing timely diagnosis and early intervention. The current study evaluated the preliminary effects and feasibility of a new program (ECHO Autism LINKS) that integrated pediatric primary care provider (PCP) training with family navigation (FN) to bridge the gaps between screening, referral, and service access. Three cohorts of PCPs (n = 42) participated in the program, which consisted of 60-minute sessions delivered by Zoom twice per month for 12 months. Each session included didactics, case-based learning, and collaborative discussion with participants and an interdisciplinary team of experts. Family navigators were members of the expert team and provided FN services to families referred by PCP participants. Program attendance and engagement were strong, with 40 cases presented and 258 families referred for FN services, most of whom (83%) needed help accessing and connecting with services, and 13% required ongoing support due to complex needs. PCPs demonstrated significant improvements in self-efficacy in providing best-practice care for children with autism, reported high satisfaction, and observed improved knowledge and practice as a result of the program. The results of this initial pilot provide support for the feasibility, acceptability, and preliminary efficacy of the ECHO Autism LINKS program. The model holds promise in addressing complex barriers to healthcare access by providing both PCPs and families with the knowledge and support they need. Future research is needed to evaluate the efficacy and effectiveness of the program in improving child and family outcomes.
... Some other factors have been identified as barriers to diagnosis in pediatric settings. They include a lack of self-confidence to identify signs and symptoms [41,45], perceptions of ASD as a poorly defined condition [45,46], and lack of familiarity with ASD [47]. ...
... Pediatric professionals are in a privileged position to respond to the challenges of early identification and the management of comorbidities. They often are the first point of contact for families with young children, and they are suited to be receptive to parental concerns [46]. Furthermore, pediatric professionals can formulate practical recommendations related to the implications of a diagnosis and existing treatments and supports [22]. ...
Early identification of children with autism is necessary to support their social and communicative skills and cognitive, verbal, and adaptive development. Researchers have identified several barriers to early diagnosis. Data collected in low- and middle-income contexts—where the vast majority of children in the world live—is scarce. In Ecuador, as in many other countries, estimates are lower compared to the global prevalence. Health authorities estimate a prevalence of 0.28% (0.18%–0.41%) in children aged five years old or less. Based on the hypothesis that, as in many parts of the world, children in Ecuador are not routinely screened and that this situation may result from poor recognition of this condition, our objective was to identify potential obstacles to case identification in pediatric settings. Several barriers, consistent with those identified in other countries, were reported by 153 participants on a survey, including lack of time, lack of resources to refer, fear of unnecessarily alarming families, and lack of information to guide families with concerns. The vast majority of participants are aware of the need for a screening tool for autism detection but report a lack of knowledge of its formal application. Most of the barriers reported in this study could be overcome by educational programs tailored to professional needs in order to support the well-being of children with autism and their families.
... Previous estimates of ASD screening have varied significantly (between 17% and 81%) and relied on physician report of "usual practice." 6,16 Our study, along with 2 recent studies, adds to understanding of ASD screening because estimates are based on data from actual visits rather than physician recall and indicates that, although ASD screening is far from universal, a high proportion of children are screened at least once. 10,11 With our study, we provide important insight into disparities in ASD screening; researchers in previous studies suggested that ASD screening in primary care reduces racial and ethnic disparities in ASD identification and age of diagnosis. ...
... 24,25 Additionally, what we defined as "false positives" may in reality be children with ASD who were not referred for ASD evaluations after screening positive and thus not formally diagnosed, a practice that has been reported by providers in this and other studies. 10,16,22 In contrast, families of children who screened positive in validation studies of the M-CHAT were offered free and timely ASD evaluations, which facilitated identification and a young age of diagnosis. Families of children in our study, like those across the country, may struggle to access affordable and timely ASD diagnostic evaluations. ...
Objectives:
To describe the proportion of children screened by the Modified Checklist for Autism in Toddlers (M-CHAT), identify characteristics associated with screen completion, and examine associations between autism spectrum disorder (ASD) screening and later ASD diagnosis.
Methods:
We examined data from children attending 18- and 24-month visits between 2013 and 2016 from 20 clinics within a health care system for evidence of screening with the M-CHAT and subsequent coding of ASD diagnosis at age >4.75 years. We interviewed providers for information about usual methods of M-CHAT scoring and ASD referral.
Results:
Of 36 233 toddlers, 73% were screened and 1.4% were later diagnosed with ASD. Hispanic children were less likely to be screened (adjusted prevalence ratio [APR]: 0.95, 95% confidence interval [CI]: 0.92-0.98), and family physicians were less likely to screen (APR: 0.12, 95% CI: 0.09-0.15). Compared with unscreened children, screen-positive children were more likely to be diagnosed with ASD (APR: 10.3, 95% CI: 7.6-14.1) and were diagnosed younger (38.5 vs 48.5 months, P < .001). The M-CHAT's sensitivity for ASD diagnosis was 33.1%, and the positive predictive value was 17.8%. Providers routinely omitted the M-CHAT follow-up interview and had uneven referral patterns.
Conclusions:
A majority of children were screened for ASD, but disparities exist among those screened. Benefits for screen-positive children are improved detection and younger age of diagnosis. Performance of the M-CHAT can be improved in real-world health care settings by administering screens with fidelity and facilitating timely ASD evaluations for screen-positive children. Providers should continue to monitor for signs of ASD in screen-negative children.
... Therefore, these parents must often become self-reliant with regard to learning and gathering information about the diagnosis and treatment of their children (Liptak et al. 2006). As Self et al. (2015) discussed, routine screening of children with a suspected diagnosis of ASDs will increase the likelihood of receiving early diagnosis and treatment. For instance, paediatricians in Canada are required by the Canadian Paediatric Society (2016) to use behavioral and developmental screening tools, such as the Ages and Stages Questionnaire (ASQ), the Child Developmental Inventory (CDI), and the Nipissing District Developmental Screen, at every well-child visit. ...
... Nevertheless, one of the challenges that physicians experience when attempting to screen for ASDs in the paediatric population is the symptom presentation of this disorder (McMorris et al. 2013). Children who exhibit less severe language, social, and behavioural problems are at a disadvantage in terms of receiving an early diagnosis in comparison to those who show severe speech and language, as well as explicit behavioural impairments (McMorris et al. 2013;Self et al. 2015). Additionally, Rhoades et al. (2007) found that healthcare professionals, including paediatricians and family physicians, are often reluctant to diagnose children with ASDs because they hope that their early symptoms will change as they age. ...
This study investigated the knowledge and perceived competence of Ontario physicians regarding the diagnosis and treatment of ASDs. Previous research demonstrates that many physicians would like more education regarding diagnosis and treatment of autism spectrum disorders (ASDs). Twenty-seven Ontario physicians filled out a questionnaire and participated in a semi-structured interview. Findings revealed that despite participants’ high perceived knowledge regarding diagnosis and treatment of ASDs, they feel uncomfortable in providing care for this population. Furthermore, many participants stated diagnosing and treating ASDs is not within their scope of practice. Findings have implications for increasing physicians’ knowledge of diagnosis and treatment of ASDs as well as what is required to enhance healthcare for individuals with ASDs and their families.
... Efforts over the past several years have focused on enhancing early identification by recommending universal and routine screening for developmental delays and autism in pediatric practices (American Academy of Pediatrics, AAP 2006;Johnson and Myers 2007). However, pediatricians have struggled to implement these recommendations in their practices (Dosreis et al. 2006;Self et al. 2015). Among the barriers to screening implementation are lack of knowledge, lack of familiarity with screening tools, and lack of confidence in identifying symptoms of autism (Fenikilé et al. 2015;Self et al. 2015). ...
... However, pediatricians have struggled to implement these recommendations in their practices (Dosreis et al. 2006;Self et al. 2015). Among the barriers to screening implementation are lack of knowledge, lack of familiarity with screening tools, and lack of confidence in identifying symptoms of autism (Fenikilé et al. 2015;Self et al. 2015). Even when a child is appropriately screened and identified as being at-risk for autism, there are significant wait times for diagnostic evaluations at specialty centers (generally between 4 and 6 months, with estimates as high as 12 months in some areas) (Austin et al. 2016;Bisgaier et al. 2011;Jimenez et al. 2017;Nicholas et al. 2008). ...
Although early diagnosis of autism is critical for promoting access to early intervention, many children experience significant diagnostic delays. Shortages of healthcare providers, limited capacity at autism centers, and geographic and socioeconomic challenges contribute to these delays. The current pilot study examined the feasibility of a new model for training community-based primary care providers (PCPs) in underserved areas in screening and diagnosis of young children at highest risk for autism. By combining hands-on training in standardized techniques with ongoing virtual mentorship and practice, the program emphasized both timely diagnosis and appropriate referral for more comprehensive assessment when necessary. Results indicated improvements in PCP practice and self-efficacy, and feasibility of the model for enhancing local access to care.
... Research shows that medical practitioners, including family physicians and pediatricians, are often the first healthcare professionals whom families of individuals with a suspected diagnosis of ASD are referred to in order to receive a diagnosis and/or to receive treatment (Self et al. 2015). Nonetheless, families of individuals with ASDs have raised concerns about the diagnostic and treatment processes of ASDs. ...
... Learners should be encouraged to engage in individual learning opportunities about ASDs and other developmental disabilities. Healthcare professionals in the USA have been mandated to utilize early developmental screening tools in order to identify developmental issues in children as young as 9 months of age (Self et al. 2015). Theoretical Models and Autism Encyclopedia Entry ...
... A recent study of 481 pediatricians and family practice physicians found that only 17% routinely screen for ASD according to AAP guidelines. 39 Furthermore, those who had less confidence in recognizing symptoms, less knowledge of diagnostic features, or no previous training in ASD were less likely to screen for ASD. A lack of familiarity with screening tools was also reported as a primary barrier. ...
... These results are particularly important in that low PCP self-efficacy in these domains has been identified as a key barrier to health care access for children with ASD. 39,42 Similarly, 43% of participants in the current study identified lack of self-efficacy as a barrier to management of children with ASD in their practices prior to participation in ECHO Autism, and 100% reported a strong desire to increase knowledge and comfort in treating children with ASD. ...
Children with autism spectrum disorder (ASD) have complex medical problems, yet they are at high risk for unmet health care needs. Primary care providers are perfectly positioned to meet these needs; however, they often lack training in ASD. This pilot project developed and tested a new model for training primary care providers in best-practice care for ASD using the Extension for Community Healthcare Outcomes (ECHO) framework. The 6-month ECHO Autism pilot project consisted of 12 biweekly clinics focused on screening and identification of ASD symptoms and management of medical and psychiatric comorbidities. Participants completed measures of practice behavior and self-efficacy in screening and management of children with ASD at baseline (pretest) and after 6 months of ECHO Autism (posttest). Statistically significant improvements were observed in self-efficacy, in adherence to ASD screening guidelines, and in use of ASD-specific resources. Participants also reported high satisfaction with the program.
... Nevertheless, screening uptake among community pediatric health providers has been suboptimal. Earlier US studies on the use of early screening found that fewer than 20% of physicians adhered to the recommendation to repeat autism screening at 18 and 24 months in conjunction with development screening (or in response to concerns) using standardized instruments and ongoing surveillance (Arunyanart et al. 2012;Self et al. 2015), and only 10% conducted both developmental and autism screenings in Spanish as recommended for Spanish-speaking families (Zuckerman et al. 2013). More recent studies indicate that 48%-54% of children in the US received autism screening at both the 18 and 24-months visits using a standardized screening tool (Carbone et al. 2020;Guthrie et al. 2019). ...
The evidence base on autism diagnosis and intervention has grown exponentially in the past two decades, but there continue to be gaps in the path connecting research, policy, and practice. For example, although standardized autism screening tools have been shown to be helpful for identifying early signs of autism and facilitating early diagnosis, many pediatricians in the United States do not use them as recommended. Similarly, despite the sound evidence supporting Naturalistic Developmental Behavioral Interventions, they are seldom used in early intervention practice. This commentary examines the nature of these gaps using the Exploration, Preparation, Implementation, Sustainment (EPIS) framework, with a focus on the role of “big P” policies, which include legislation and agency regulations, and “little p” policies, which include guidelines set by professional organizations. Efforts to bridge the gap between research and practice through policy offer the potential for improving the lives of those on the autism spectrum through early detection and intervention programs and beyond.
... Indeed, although the American Academy of Pediatrics recommends routine autism screening at 18 and 24 months, 18 screening tools are often not used as prescribed, with frequent deviations including selective administration to children presenting noticeable red flags, selective referrals among screenpositive children, and incomplete administration. 16,19,20 These deviations decrease the screener's ability to detect children with a high likelihood of autism and might contribute to delay in access to services for those whose manifestations of autism are less obvious. Rigorous research in this area, however, is limited. ...
... Early recognition of the signs and symptoms of ASD is paramount given that the earlier the individual with ASD enters treatment, the better the prognosis (Clark et al. 2018, Dawson 2008. Physicians' abilities to recognize the signs of ASD early is vital for the best care for this population (Self et al. 2015). ...
Employing a mixed methods approach, this study examined the knowledge and information Ontario physicians have concerning Autism Spectrum Disorder (ASD). Physicians are at the front line when it comes to identifying ASD. The Healthcare Professional Questionnaire was filled out by 46 physicians and 16 filled out the Knowledge about Childhood Autism among Health Workers Questionnaire (KCAHW) before being asked to participate in a semi-structured interview in which 7 participated. Paediatricians and psychiatrist reported having the highest levels of knowledge. Findings revealed that physicians are lacking in information regarding some early signs (i.e. social smiling = 50%), added diagnostic criteria (i.e. hypo-reactivity to sensory information = 56%), and the prevalence rate of ASD (average estimate of 1 in 1109). Additionally, exposure to individuals with ASD was found to be a facilitator to knowledge acquisition regarding ASD. The physicians recommended a road map method to disseminate information and increase knowledge and awareness. Implications of the findings include what areas of knowledge and information need to be increased, and how knowledge and competency can be increased, to better care for this population.
... For example, it has been shown that children diagnosed before 2.5 years of age and treated in community settings are three times more likely to make considerable improvements in social symptoms in comparison to children diagnosed at later ages (Gabbay-Dizdar et al., 2021). This motivates research regarding easily detectable early signs that can help reduce the age of ASD diagnosis, particularly in community settings where the current mean diagnosis age is > 3.5 years old (van 't Hof et al., 2021) and standardized ASD screening tools are used by < 50% of physicians (Gillis, 2009;Gura et al., 2011;Self et al., 2014). We briefly describe previously reported factors that are associated with ASD diagnosis at earlier ages while highlighting the potential importance of language delays. ...
Previous studies have reported that ASD children with more severe symptoms are diagnosed earlier. However, previous studies in community settings have mostly relied on retrospective parental reports without the use of quantitative standardized test scores. Here, we evaluated the association of language, cognitive, and ASD severity standardized scores with the age of diagnosis in 1-6-year-old children diagnosed in a public healthcare setting. The results revealed that language scores were the strongest variable associated with the age of diagnosis, explaining ~ 30% of the variability across children. Indeed, all children diagnosed before 30-months of age exhibited moderate-to-severe language delays. These results further substantiate the prominence of language delay as a highly visible symptom associated with earlier ASD diagnosis in community clinical settings.
... The tendency to consistently test and be confident in identifying warning indicators of ASD was substantially linked with respondents' pre-professional knowledge in ASD. Physicians who do ASD-specific screenings and recognize early indicators can set families and children on the route to receiving much-needed services (19). ...
Autism spectrum disorder is a neurodevelopmental disorder marked by social communication difficulties, restricted interests, and repetitive activities. Both genetic and environmental variables impacting the growing brain have an influence on it. Around the world, 1 in 100 children is identified with autism spectrum disorder. Estimates of prevalence has increased over time and varied significantly inside and across sociodemographic groups. Family physicians are the primary healthcare experts to whom children with autism are directed when they have signs and symptoms related to autism or for any other reason, including protective healthcare services. Early diagnosis of autism result in effective and timely management of the patients, hence family medicine practice plays a vital role in autism diagnosis as family physicians are the first contact with the patient. The purpose of this research is to review the available information about the autism screening in family medicine practice regarding early diagnosis, barriers and benefits. The significance of acquiring an early diagnosis of autism and following early therapeutic intervention is well-established in the literature, as late diagnosis is linked to greater parental stress and delayed early intervention, both of which are necessary for long-term beneficial outcomes. Early detection is critical since studies have shown that early diagnosis and intervention programs improve functional results and quality of life. As family physicians are the community's first point of contact, it's vital for them to be able to recognize autism early on in an effort to enhance early intervention and a better outcome.
... However, screening practices vary widely. For example, only 17% of pediatricians and family practitioners across three Great Plains states in the USA reported screening for autism routinely following the AAP guidelines, and 41% screen for autism in ways that deviate from the AAP guidelines (Self et al., 2015). Screening guidelines vary among medical bodies within and outside the USA; for example, the United Kingdom National Screening Committee does not currently recommend universal screening due to concerns with the psychometric properties of existing screening tools in the general population (Allaby & Sharma, 2011). ...
Average age of autism diagnosis exceeds four years (Maenner et al., 2020), delaying access to services and limiting early developmental research (Zwaigenbaum et al., 2015; Fletcher-Watson et al., 2017). Autism screening in early childhood settings may be a tool for enabling earlier, equitable diagnosis. This systematic review investigated the landscape of autism screening in preschools/childcare centers. Thirty-one studies were identified (7 studies on classroom observations; 22 on teacher-report questionnaires, 2 others). Questionnaires completed by early childcare staff and observational screening methods administered directly in early childcare settings showed evidence of reliability and validity. Many approaches provided information not gleaned from other reports and corresponded well with diagnostic decisions. Implications for future research are discussed.
... Yet,~60% of children who fail screenings are neither referred to a specialist nor diagnosed in the primary care setting 22 . Common barriers to primary care diagnosis include low confidence in using ASD diagnostic tools due to lack of specialist training and/or lack of time to administer, lack of perceived selfefficacy in making the diagnosis, and lack of time to properly review results with caregivers and discuss treatment recommendations [23][24][25] . In addition, common screening tools used in primary care settings may miss many cases of ASD. ...
Autism spectrum disorder (ASD) can be reliably diagnosed at 18 months, yet significant diagnostic delays persist in the United States. This double-blinded, multi-site, prospective, active comparator cohort study tested the accuracy of an artificial intelligence-based Software as a Medical Device designed to aid primary care healthcare providers (HCPs) in diagnosing ASD. The Device combines behavioral features from three distinct inputs (a caregiver questionnaire, analysis of two short home videos, and an HCP questionnaire) in a gradient boosted decision tree machine learning algorithm to produce either an ASD positive, ASD negative, or indeterminate output. This study compared Device outputs to diagnostic agreement by two or more independent specialists in a cohort of 18–72-month-olds with developmental delay concerns (425 study completers, 36% female, 29% ASD prevalence). Device output PPV for all study completers was 80.8% (95% confidence intervals (CI), 70.3%–88.8%) and NPV was 98.3% (90.6%–100%). For the 31.8% of participants who received a determinate output (ASD positive or negative) Device sensitivity was 98.4% (91.6%–100%) and specificity was 78.9% (67.6%–87.7%). The Device’s indeterminate output acts as a risk control measure when inputs are insufficiently granular to make a determinate recommendation with confidence. If this risk control measure were removed, the sensitivity for all study completers would fall to 51.6% (63/122) (95% CI 42.4%, 60.8%), and specificity would fall to 18.5% (56/303) (95% CI 14.3%, 23.3%). Among participants for whom the Device abstained from providing a result, specialists identified that 91% had one or more complex neurodevelopmental disorders. No significant differences in Device performance were found across participants’ sex, race/ethnicity, income, or education level. For nearly a third of this primary care sample, the Device enabled timely diagnostic evaluation with a high degree of accuracy. The Device shows promise to significantly increase the number of children able to be diagnosed with ASD in a primary care setting, potentially facilitating earlier intervention and more efficient use of specialist resources.
... Also, in their study examining case records of 2,867 children aged 6 to 12 years, who were registered at the Maccabi Child Development Center (MCDC) in Israel, Davidovitch et al. (2015) found that 221 children were diagnosed with ASD after the age of 6-even though their initial developmental evaluation (before the age of 6) came out negative for ASD. A delayed or missed ASD diagnosis has been associated with several factors, such as comorbid classifications (Supekar et al., 2017), the heterogeneity of ASD symptom composition, lower severity of ASD symptoms, lower levels of impairment (e.g., less language/communication deficits, less support needed by the child; less parental concern about initial symptoms; Daniels & Mandell, 2014), children's ability to mask symptoms with learned strategies (APA, 2013), and the lack of adequate screening practices (Self et al., 2015). Also, detection as early as possible might prevent negative outcomes for both children (e.g., rejection by peers, harsh treatment by teachers, and inappropriate education) and their parents (e.g., frustration due to being told that there is nothing wrong with their child and not receiving appropriate support; Howlin & Asgharian, 1999). ...
The first aim of this study was to construct/validate a subscale—with cut-offs considering gender/age differences—for the school-age Child Behavior CheckList (CBCL) to screen for Autism Spectrum Disorder (ASD) applying both data-driven (N = 1666) and clinician-expert (N = 15) approaches. Further, we compared these to previously established CBCL ASD profiles/subscales and DSM-oriented subscales. The second aim was to cross-validate results in two truly independent samples (N = 2445 and 886). Despite relatively low discriminative power of all subscales in the cross-validation samples, results indicated that the data-driven subscale had the best potential to screen for ASD and a similar screening potential as the DSM-oriented subscales. Given beneficial implications for pediatric/clinical practice, we encourage colleagues to continue the validation of this CBCL ASD subscale.
... These measures were selected because recent reviews have identified them as being the most commonly used assessment tools to screen for ASD by school psychologists (i.e., CARS-2, GARS-3; Allen et al., 2008), pediatricians (i.e., MCHAT-R/F; Self et al., 2015), and educational personnel (i.e., ASRS, SRS-2; Wilkinson, 2011). For the purposes of this review, the main part of the M-CHAT-R and the follow-up section were treated as separate assessments. ...
The research on autism spectrum disorder (ASD) disproportionately originates from high-income countries, indicating a disparity of research in low- and middle-income countries (LMIC). One possible reason for this disparity is a lack of culturally appropriate screening and diagnostic tools for use in LMIC. Although a number of tools are commonly used in the United States, it is likely that using these tools in contexts in which they were not intended may be problematic. As such, this study examined factors that may inhibit the feasibility and usability of common ASD assessment tools in LMIC. Assessments were analyzed for readability, initial and continued cost, training required, restrictions on purchasing, materials required, and presence of items assessing expressive and receptive language. Results of the study indicated that the majority of validated ASD assessment tools present a multitude of barriers for use in LMIC. Implications for research and practice are discussed.
... Los profesionales de la pediatría están llamados a jugar un papel importante. Al tener una trato constante con la familia de niños pequeños pueden establecer con ésta una relación directa y significativa [69]. Su implicación en el proceso de cribado es una cuestión fundamental para el manejo eficiente de los casos de TEA, que va desde el monitoreo del desarrollo hasta el diagnóstico, pasando por la transmisión de información sobre los apoyos existentes para los síntomas centrales y el seguimiento de eventuales comorbilidades [70]. ...
El trastorno del espectro autista (TEA) es una condición del desarrollo que impacta a una persona a lo largo de su vida. Las características del TEA tienen que ver con dificultades para comunicar e interactuar socialmente y con la presencia de comportamientos repetitivos o intereses particularmente intensos. La familiarización con los criterios actuales de diagnóstico y con los procesos de evaluación comportamental y etiológica en entornos pediátricos es indispensable para poder aportar el sostén necesario a la persona con autismo y a su familia. Varias guías clínicas y estándares de práctica han publicados en diferentes países con el objetivo de promover prácticas basadas en evidencia. El siguiente artículo revisa y sintetiza estas recomendaciones sobre la identificación y el diagnóstico del TEA en los primeros años de vida. Esta revisión ha sido efectuada a la luz de recomendaciones de la comunidad internacional que recalcan la necesidad de programas y servicios locales basados en evidencia y sensibles culturalmente, particularmente en contextos de ingresos medios y bajos.
... A 2004 survey of 471 pediatricians found that only 8% screened for ASD [26], compared to more than 50% in a 2011 survey of 406 pediatricians [27]. In a more recent survey of 223 pediatricians, 27% reported routinely screening for ASD following AAP guidelines, while 53% reported screening but did not follow the guidelines [28]. Recent research provides further evidence that, while more pediatricians are using tools like the M-CHAT, the M-CHAT is often not used as intended, including selective administration to specific children (e.g., children presenting noticeable red flags), selective referrals of children who screen positive, and incomplete administration [21,29]. ...
Background
Autism spectrum disorder (ASD) affects one in 54 children in the United States of America, and supporting people with ASD across the lifespan presents challenges that impact individuals, families, and communities and can be quite costly. The American Academy of Pediatrics has issued recommendations for routine ASD screening at 18 and 24 months, but some research suggests that few pediatricians perform high-fidelity, standardized screening universally. Furthermore, the United States Preventive Services Task Force (USPSTF) found insufficient evidence to recommend for or against universal ASD screening. The objective of this study is to test the hypothesis that children with ASD who have high fidelity; standardized screening will achieve superior outcomes at 5 years of age compared to children receiving usual care ASD detection strategies.
Methods
This is a cluster-randomized, controlled clinical trial in 3 sites in the USA. Pediatric practices will be randomized to implement universal, standardized, high-fidelity toddler screening or usual care, with randomization stratified by the practice size. The study will enroll 3450 children, approximately half in each group. From this sample, we anticipate 100 children to be diagnosed with ASD. Children in both groups receiving an ASD diagnosis will be administered the Early Start Denver Model, an evidence-based early intervention addressing social, communication, and cognitive functioning. Treatment will last for 1 year, with up to 20 h per week of therapy for children with ASD.
Results
Primary outcomes measured at baseline, following treatment, and at 4 and 5 years of age include ASD symptom severity (Brief Observation of Social Communication Change (BOSCC)) and cognitive functioning (Mullen Scales of Early Learning (MSEL) and Differential Abilities Scale-II (DAS-II)). Secondary outcomes in children include measures of adaptive functioning, ASD symptoms, and kindergarten readiness; secondary analyses will also examine stress and empowerment among parents. Several novel exploratory measures will be included as well. The study will utilize a modified intention-to-treat analysis.
Conclusions
This trial will evaluate the impact of universal, standardized, high-fidelity screening for ASD among children at 18 months of age, with a goal of providing evidence to support this strategy to detect ASD in toddlers in order to start treatment as young as possible and maximize outcomes.
Ethics and dissemination
This study was approved by the Institutional Review Board at Drexel University (IRB protocol: 1607004653). All findings will be provided by the principal investigator via email; data will be available through the NIMH Data Archive (https://nda.nih.gov/).
Trial registration
ClinicalTrials.gov NCT03333629. Registered on November 7, 2017
... the screening process. While some mitigation efforts may require more significant modification to current practices (Self et al., 2015;Siller et al., 2013), others may be the result of adjustment by the clinician, such as the timing or the method of delivering screening information or results (DuBay et al., 2018;Perera et al., 2017;Zuckerman et al., 2014b) to minimize parental distress. Moreover, providers may also collaborate closely with caregivers to minimize child distress by determining optimal times and conditions for administration of observational screening tools. ...
The U.S. Preventive Services Task Force (USPSTF) report on screening for Autism Spectrum Disorder (ASD) highlighted the need for research that examines the harms potentially associated with screening so as to assess the overall net benefit of universal screening. In response, this study engages qualitative, semi-structured interviews to generate a taxonomy outlining potential harms reported by parents and providers (pediatricians and Early Intervention providers) with experience in screening young children for ASD. Potential harms emerged including: physical, psychological, social, logistical/financial, opportunity cost, attrition, and exacerbation of non-targeted disparities. Respondents reported harms being experienced by the toddlers, parents, and providers. The harms reported highlight opportunities for providers to offer resources that mitigate the potential for these unintended consequences.
... Therefore, many children miss the window of opportunity for critical early intervention. Pediatricians are advised to screen for autism at 18-and 24-month well child visits [10], but surveys of healthcare providers suggest significant variability in the rates at which they follow these guidelines [11][12][13]. Further, pediatric healthcare professionals and parents may have limited knowledge of early "red flags" for autism [14,15]. ...
Objective
With the average age of diagnosis of autism hovering between 4 and 5 years of age, many children do not receive critical early intervention. Health information messages may be useful for increasing parents’ understanding of the importance of early autism screening.
Methods
Messages promoting autism screening were presented to 282 parents in a 2 (message frame: gain, loss) x 3 (evidence type: narrative, statistical, and hybrid), online, between-participants factorial design. Participants’ involvement, affective responses, perceived threat to behavioral freedom, attitudes, and intentions to discuss screening with a healthcare provider were analyzed.
Results
Loss-framed messages that included a hybrid of first-person narrative and statistical evidence were related to favorable ratings for most outcomes. Levels of perceived threat to behavioral freedom partially mediated involvement and attitudes, in a negative direction, for loss-framed narrative messages.
Conclusion
Results of this preliminary study supported the inclusion of both evidence types in messages developed to encourage parents to engage in early screening for autism, and partially supported focusing these messages on the potential costs of not screening.
Practice Implications
Effective use of messaging with parents could help to increase knowledge and facilitate shared decision-making with health care providers to engage in early screening for autism.
... Vital to the control of ASD is diagnosis and screening and are current research interests aimed at improving the prognosis of the disorder. This study concluded that Mississippi has poor routine screening rates for ASD in the indicated age groups, 18 and 24 months, respectively, following patterns nationally as noted by the literature (Self, Parham, & Rajagopalan, 2015; Tennessee Chapter of American Academy of Pediatrics, n.d.). Although best outcomes are associated with children that receive therapy by the age of 2 years, current routine ASD screening is sporadic. ...
Best practice recommendations by the American Academy of Pediatrics support routine screening for developmental delays in early childhood, specifically at 18 and 24 months for Autism Spectrum Disorder (ASD). During this critical developmental period, early identification and intervention are associated with best outcomes for ASD. Pediatricians perform a critical role in the early recognition of ASD, which can co-exist with other disorders further complicating the diagnosis. However, little is known about the current screening practices in Mississippi. This study provides a unique view of Mississippi pediatricians’ perspectives of barriers to routine ASD screening. The intent of this phenomenology study was to better understand current practices and potential barriers, for performing ASD screening at the 18 and 24 month well child visits, as perceived by a sample of Mississippi’s pediatric providers. Data collected through key informant interviews were coded to identify commonalities and patterns in responses and aided in the identification of current practices and perceived barriers through qualitative analysis. Although there was increasing implementation of ASD screening by health care providers, routine screening was not consistently conducted. The results suggest a need for a screening tool embedded in the electronic health record for easy access and monitoring. Findings replicated prior studies and endorsed the relevance of barriers that exist in screening Mississippi’s youngest population. Mississippi children are at risk of delayed ASD diagnosis if modifications cannot be made to support the clinical environment for pediatricians.
Abbreviations
AAP: American Academy of Pediatrics; ASD: Autism Spectrum Disorder; EHR: Electronic Health Record; M-CHAT-R/F: Modified Checklist for Autism in Toddlers, Revised with Follow-Up; CAY: Center for Advancement of Youth; ABA: Applied Behavior Analysis
... In practice, Level 1 screeners for ASD are used 8-60% of the time [Arunyanart et al., 2012;Dosreis, Weiner, Johnson, & Newschaffer, 2006;Gillis, 2009;Self, Parham, & Rajagopalan, 2015]. Furthermore, two-tiered screening (i.e., screening children who screened positive on a Level 1 screener with a Level 2 screener) for ASD is rarely used in the United States [Khowaja, Robins, & Adamson, 2017]. ...
Access to early intervention as early in development as possible is critical to maximizing long‐term outcomes for children with autism spectrum disorders (ASD). However, despite the fact that ASD can be reliably diagnosed by 24 months, the average age of diagnosis is 2 years later. Waitlists for specialized developmental evaluations are one barrier to early diagnosis. The purpose of this study was to examine one potential approach to reducing wait time for an ASD diagnostic evaluation by examining the utility of using more than one threshold for an autism screening tool, the Screening Tool for Autism in Toddlers and Young Children (STAT). Participants included 171 children between 24 and 36 months of age who received a medical diagnostic evaluation through Illinois' Early Intervention Program. This study directly compared the performance of the STAT when scored: (a) using the original single threshold, (b) using seven equally weighted items using a single threshold, and (c) using all items differentially weighted based on how strongly that item predicts a later ASD diagnosis. In addition, this study explored the potential utility of using two thresholds rather than a single threshold for each scoring method. Results of this study suggest that using a two‐threshold logistic regression method has potential psychometric advantages over a single threshold and categorical scoring. Using this approach may reduce the wait time for specialty ASD diagnostic evaluations by maximizing true negatives and true positives, such that specialty evaluations may be reserved for those cases that are more ambiguous or more complex. Autism Res 2018. © 2018 International Society for Autism Research, Wiley Periodicals, Inc.
Lay Summary
This study examined the benefits of using two versus one cutoff score when screening for autism. Results indicate that having two scores and weighting test items based on predictive association with an autism diagnosis is better than using a single score and weighting each item equally. Using such an approach may reduce the wait time for specialty autism diagnostic evaluations, such that specialty evaluations may be reserved for those cases that are more ambiguous or more complex.
... Estimates of pediatrician screening practices are variable, ranging from 22% to 82% for broad developmental screening (Dosreis et al., 2006;Gillis, 2009;Pierce et al., 2011;Radecki et al., 2011) and 8% to 60% for ASDspecific screening (Arunyanart et al., 2012;Dosreis et al., 2006;Gillis, 2009;Self et al., 2015); importantly, pediatrician screening rates are increasing (Radecki et al., 2011). Barriers have included limited time and resources to screen (Carbone et al., 2010;King et al., 2010), lack of knowledge about ASD-specific screening tools (Dosreis et al., 2006), and reduced confidence identifying symptoms (Zuckerman et al., 2013). ...
Despite advances in autism screening practices, challenges persist, including barriers to implementing universal screening in primary care and difficulty accessing services. The high false positive rate of Level 1 screening methods presents especially daunting difficulties because it increases the need for comprehensive autism evaluations. This study explored whether two-tiered screening—combining Level 1 (Modified Checklist for Autism in Toddlers, Revised with Follow-Up) and Level 2 (Screening Tool for Autism in Toddlers and Young Children) measures—improves the early detection of autism. This study examined a sample of 109 toddlers who screened positive on Level 1 screening and completed a Level 2 screening measure prior to a diagnostic evaluation. Results indicated that two-tiered screening reduced the false positive rate using published Screening Tool for Autism in Toddlers and Young Children cutoffs compared to Level 1 screening alone, although at a cost to sensitivity. However, alternative Screening Tool for Autism in Toddlers and Young Children scoring in the two-tiered screening improved both positive predictive value and sensitivity. Exploratory analyses were conducted, including comparison of autism symptoms and clinical profiles across screening subsamples. Recommendations regarding clinical implications of two-tiered screening and future areas of research are presented.
... Developmental screening tools can also reveal parental concerns and serve as ice-breakers on both sides. Although only 17% of pediatrician survey respondents were following AAP recommendations, 41% were doing some kind of autism screening (Self, Parham, & Rajagopalan, 2015). Pediatricians/primary care providers may fear that raising concerns about ASD will upset parents; additional barriers include lack of time in the well-childcare visit, poor reimbursement, lack of familiarity with screening tools, referral to a specialist rather than screening, limited knowledge of community resources, unfamiliarity with how autism presents in very young children, a belief that autism cannot be detected at such a young age or that effective treatments are not available (M. L. Barton, Dumont-Mathieu, & Fein, 2012;Dosreis, Weiner, Johnson, & Newschaffer, 2006;Miller et al., 2011). ...
Autism spectrum disorders (ASDs) are usually lifelong with wide ranging functional outcomes. Intensive behavioral intervention, implemented early, can improve outcome significantly. Some individuals, often with milder symptoms, if treated early, can attain social, cognitive, educational, and vocational functioning in the typical range. To qualify, children must be detected and diagnosed as early as possible. Without universal screening, many children from all backgrounds are not detected until past early childhood; children from economically disadvantaged and ethnic minority families are diagnosed and treated, on average, 2 years later than others. Primary care physician surveillance should incorporate parental concerns and be supplemented by universal ASD screening at 18 and 24 months. ASD screening in other community settings could detect risk in children who may not have primary or consistent medical care. Effective ASD diagnostic systems should encompass mildly affected children. Although universal screening can reduce inequities in identification, outcome disparities will persist while intervention funding remains local.
... Despite the AAP guidelines for surveillance and screening for ASD, only a minority of pediatricians are performing routine developmental and ASD-specific screenings (e.g., Gillis, 2009;Pierce et al., 2011;Self, Parham, & Rajagopalan, 2014) with approximately 17.7% following the specific AAP guidelines (Arunyanart et al., 2012). As discussed by Crais and colleagues (2014), there are several perceived barriers including, but not limited to, lack of time and resources, limited awareness of ASD-specific screening tools, and concerns regarding the quality of screening tools, the referral process for follow-up assessment and early intervention, including long waitlists, and the effectiveness of interventions. ...
Significant progress has been made in regards to early identification and early intervention for young children with autism spectrum disorder (ASD). However, a substantial gap typically appears between the time that symptoms begin to present and the average age of diagnosis. Therefore, it remains critical that clinicians and researchers focus their attention on improving early screening and diagnostic practices to allow children to access appropriate ASD-specific intervention as early as possible. However, the United States Preventative Services Task Force recently provided recommendations regarding routine developmental surveillance that have sparked a heated debate among advocates, families, health care professionals, and researchers within the autism community. Speech-language pathologists (SLPs) play an essential role in process of screening for and early identification of ASD. Therefore, the purpose of this paper is to provide SLPs with an overview of the current recommendations and best practices related to screening for ASD.
Autism spectrum disorder (ASD) is a behavioural and developmental illness caused by brain abnormalities. Individuals with ASD have difficulty with limited or repeated acts, as well as social communication and participation. Additionally, people with ASD may learn, move, or pay attention in various ways. It should be remembered that some individuals without ASD may also experience some of these symptoms. However, these traits may render life very difficult for those with ASD. Since the trend of machine learning (ML) and deep learning (DL) techniques has been on an onset in every domain, the same is being actively utilized for diagnosis and treatment of this aliment. This chapter provides an in-depth insight into the efforts of researchers on diverse crowd for development and implementation of ML/DL models to assist the ailing individual along with their families and health caregivers. It provides the review of existing works in diverse directions in focus with ASD like prediction, segregation, correlation, etc. between parameters which would help the medical professionals.
Objective:
The purpose of this study is to decrease wait time and improve access to developmental-behavioral pediatric (DBP) evaluation in children 4 years of age and younger as part of a quality improvement (QI) initiative in an urban safety-net hospital.
Methods:
A primary care pediatrician received DBP minifellowship training 6 hours per week for 1 year to become a developmentally-trained primary care clinician (DT-PCC). DT-PCCs then conducted developmental evaluations that consisted of using a Childhood Autism Rating Scale and Brief Observation of Symptoms of Autism to evaluate children 4 years and younger referred within the practice. Baseline standard practice involved a 3-visit model: DBP advanced practice clinician (DBP-APC) intake visit, neurodevelopmental evaluation by a developmental-behavioral pediatrician (DBP), and feedback by a developmental-behavioral pediatrician. Two QI cycles were completed to streamline the referral and evaluation process.
Results:
Seventy patients with a mean age of 29.5 months were seen. The average days to initial developmental assessment decreased from 135.3 days to 67.9 days with a streamlined referral to the DT-PCC. Of the 43 patients who required further evaluation by a DBP, the average days to developmental assessment reduced from 290.1 to 120.4 days.
Conclusion:
Developmentally-trained primary care clinicians allowed for earlier access to developmental evaluations. Further research should explore how DT-PCCs can improve access to care and treatment for children with developmental delays.
While autism spectrum disorder (ASD) has traditionally been diagnosed in specialty care, rising prevalence rates have strained specialist capacity and created significant diagnostic bottlenecks. With long wait times for specialist evaluations, pediatricians are increasingly being asked to play a greater role in identifying, diagnosing, and managing ASD within the medical home. In this commentary we draw parallels between the challenges pediatricians faced two decades ago learning how to manage pediatric asthma in the medical home, to those faced today in the field of primary care ASD management. Reflecting on the lessons learnt in primary care asthma management may help us construct a roadmap towards a higher and more consistent standard of ASD primary care for patients and their families.
An early diagnosis of autism spectrum disorder (ASD) can improve outcomes for children and assist families in accessing services. Part C providers are often tasked with screening for ASD. The purpose of this study was to survey Part C providers nationwide to understand their ASD screening practices and training needs and extend a survey conducted by Tomlin and colleagues. A total of 327 providers participated. Results indicated a majority of respondents (75.8%) screen for ASD using a variety of different measures, while only 26.9% are required by their program to conduct universal screenings. Most participants reported feeling confident in screening for ASD, discussing a child’s red flags with a family, referring a child for further evaluation, and discussing recent evidence surrounding ASD. An area where providers were less confident was working with interpreters to screen for ASD or discuss screening results and ASD with families with cultural or linguistic diversity. Despite high confidence levels in screening for ASD, a vast majority of participants reported they would be interested in attending a training on screening for ASD. Professional development surrounding screening for ASD and discussing ASD with families from diverse backgrounds may assist in improving Part C provider screening practices.
Although pediatricians and family physicians often refer children to early intervention (EI) and provide support and information to families, medical school training that provides information about special education policy and procedures is often limited. We piloted a program whereby medical students, during their pediatric clerkship, observed school classrooms that included young children with disabilities. Visit impact was measured through assessments of perceived competency and a written reflection. Students showed perceived competency growth across all areas measured. Written reflections demonstrated understanding of special education practices and collaborative opportunities. These findings suggest that incorporating experiential learning through facilitated school visits is a way to enhance the learning experience of medical students on topics essential to supporting children with disabilities and their families.
Objective:
The objective of this study was to implement a validated, university-based early detection program, the Get SET Early model, in a community-based setting. Get SET was developed to improve Screening, Evaluation, and Treatment referral practices. Specifically, its purpose was to lower the age of diagnosis and enable toddlers with autism spectrum disorder (ASD) to begin treatment by 36 months.
Methods:
One hundred nine pediatric health care providers were recruited to administer the Communication and Symbolic Behavior Scales Developmental Profile Infant-Toddler Checklist at 12-month, 18-month, and 24-month well-baby visits and referred toddlers whose scores indicated the need for a developmental evaluation. Licensed psychologists were trained to provide diagnostic evaluations to toddlers as young as 12 months. Mean age of diagnosis was compared with current population rates.
Results:
In 4 years, 45,504 screens were administered at well-baby visits, and 648 children were evaluated at least 1 time. The overall median age for ASD diagnosis was 22 months, which is significantly lower than the median age reported by the CDC (57 months). For children screened at 12 months, the age of first diagnosis was significantly lower at 15 months. Of the 350 children who completed at least 1 follow-up evaluation, 323 were diagnosed with ASD or another delay, and 239 (74%) were enrolled in a treatment program.
Conclusion:
Toddlers with ASD were diagnosed nearly 3 years earlier than the most recent CDC report, which allowed children to start a treatment program by 36 months. Overall, Get SET Early was an effective strategy for improving the current approach to screening, evaluation, and treatment. Efforts to demonstrate sustainability are underway.
Background:
The Extension for Community Health Outcomes (ECHO) Autism Program trains clinicians to screen, diagnose, and care for children with autism spectrum disorder (ASD) in primary care settings. This study will assess the feasibility and impact of integrating an artificial intelligence (AI)-based ASD diagnosis aid (the device) into the existing ECHO Autism Screening Tool for Autism in Toddlers and Young Children (STAT) diagnosis model. The prescription-only Software as a Medical Device, designed for use in children aged 18 to 72 months at risk for developmental delay, produces ASD diagnostic recommendations after analyzing behavioral features from 3 distinct inputs: a caregiver questionnaire, 2 short home videos analyzed by trained video analysts, and a health care provider questionnaire. The device is not a stand-alone diagnostic and should be used in conjunction with clinical judgment.
Objective:
This study aims to assess the feasibility and impact of integrating an AI-based ASD diagnosis aid into the ECHO Autism STAT diagnosis model. The time from initial ECHO Autism clinician concern to ASD diagnosis is the primary end point. Secondary end points include the time from initial caregiver concern to ASD diagnosis, time from diagnosis to treatment initiation, and clinician and caregiver experience of device use as part of the ASD diagnostic journey.
Methods:
Research participants for this prospective observational study will be patients suspected of having ASD (aged 18-72 months) and their caregivers and up to 15 trained ECHO Autism clinicians recruited by the ECHO Autism Communities research team from across rural and suburban areas of the United States. Clinicians will provide routine clinical care and conduct best practice ECHO Autism diagnostic evaluations in addition to prescribing the device. Outcome data will be collected via a combination of electronic questionnaires, reviews of standard clinical care records, and analysis of device outputs. The expected study duration is no more than 12 months. The study was approved by the institutional review board of the University of Missouri-Columbia (institutional review board-assigned project number 2075722).
Results:
Participant recruitment began in April 2022. As of June 2022, a total of 41 participants have been enrolled.
Conclusions:
This prospective observational study will be the first to evaluate the use of a novel AI-based ASD diagnosis aid as part of a real-world primary care diagnostic pathway. If device integration into primary care proves feasible and efficacious, prolonged delays between the first ASD concern and eventual diagnosis may be reduced. Streamlining primary care ASD diagnosis could potentially reduce the strain on specialty services and allow a greater proportion of children to commence early intervention during a critical neurodevelopmental window.
Trial registration:
ClinicalTrials.gov NCT05223374; https://clinicaltrials.gov/ct2/show/NCT05223374.
International registered report identifier (irrid):
PRR1-10.2196/37576.
This qualitative study explored the knowledge and perceptions about early screening for developmental disabilities and autism spectrum disorder (ASD) in childcare settings using semistructured interviews with directors, teachers, and parents at 12 childcare centers. Results indicated that most of the directors and teachers, who were interviewed, were cautiously open to implementing screening programs but wanted additional training in recognizing early signs of ASD and other developmental disabilities, as well as communicating with families about concerns. All interviewed parents reported wanting childcare professionals to communicate with them if they had developmental concerns for their child, and all but one parent was open to the idea of universal screening at their child's center.
There continues to be an ongoing effort in pediatric practice to improve screening and referral rates of children with potential developmental disabilities including Autism Spectrum Disorder (ASD). Successes have been seen in practices relative to broad developmental screening efforts and increasing improvement in screening for ASD. However, gaps continue to occur in screening, referral for further evaluation, and follow-up that allows the practice (and treating provider) to know the outcome of the referral. This type of “closing the loop” between providers and referral sources is necessary for the practice to function as a medical home for the child and family. In addition, caregivers have highlighted many challenges in the early identification process in working with their primary care provider. This manuscript discusses some of the barriers to early identification for children and their families, successful strategies for more consistent screening and closing the loop following referral, and highlights parental perceptions about identification and referral. Further, practical approaches that could be used by pediatric providers are highlighted.
Objective:
To determine whether an intervention addressing both logistical and knowledge barriers to early screening for autism spectrum disorder (ASD) increases evidence-based screening during 18-month well-child visits and PCPs' perceived self-efficacy in caring for children with ASD.
Methods:
Forty-six primary care providers (PCPs) from 10 diverse practices across four counties in Washington State participated. PCPs attended a two-hour training workshop on early recognition and care for toddlers with ASD and use of a REDCap-based version of the Modified Checklist for Autism in Toddlers-Revised with Follow-up (webM-CHAT-R/F) that provided automated presentation and scoring of follow-up questions. Data were collected at baseline and six-months following each county's training window. PCPs' screening methods and rates and perceived self-efficacy regarding ASD care were measured by self-report and webM-CHAT-R/F use was measured via REDCap records.
Results:
At follow-up, 8 of the 10 practices were using the webM-CHAT-R/F routinely at 18-month visits. The proportion of PCPs reporting routine M-CHAT screening increased from 82% at baseline to 98% at follow-up (16% increase, 95% CI 3%-28%; McNemar exact p=.02). The proportion using the M-CHAT-R/F follow-up interview questions increased from 33% to 82% (49% increase, 95% CI 30%-68%, exact McNemar test, p<.001). Significant increases in self-efficacy were found for all seven areas assessed (ps≤.008).
Conclusions:
This brief intervention increased PCPs' self-reported valid use of the M-CHAT-R/F at 18 months and their self-efficacy regarding ASD care. Combining educational information with a web-based ASD screen incorporating the M-CHAT-R/F follow-up questions may increase universal ASD screening with improved fidelity.
Objective:
To examine the effect of a brief Enhanced training using the information-motivation-behavior (IMB) change model on improving providers' surveillance rates and accuracy of autism spectrum disorder (ASD) detection.
Method:
Toddlers (n = 5,672) were screened for ASD during their pediatric well-child visits. Pediatric providers (n = 120) were randomized to receive Enhanced (incorporating components of the IMB model) or Control training. Providers indicated whether they had an ASD concern at each well-child visit. Toddlers who were positive on any screener and/or whose provider indicated ASD concern were invited for a diagnostic evaluation. Differences in provider-indicated ASD concerns before and after training were evaluated using log-linear analyses.
Results:
The Enhanced training did not have a significant effect on provider-endorsed ASD concerns (p = 0.615) or accuracy of endorsing concerns (p = 0.619). Providers in the Control training showed a significant reduction in indicating whether or not they had concerns after the training (from 71.9% to 64.3%), which did not occur in the Enhanced group. The Enhanced training led to more frequent endorsements of language (χ2 = 8.772, p = 0.003) and restricted and repetitive behavior (χ2 = 7.918, p = 0.005) concerns for children seen after training.
Conclusion:
Provider training had limited impact on ASD surveillance, indicating the importance of using formal screening instruments that rely on parent report during well-child visits to complement developmental surveillance. Future research should examine whether providers who indicate specific concerns are more likely to accurately refer children for ASD evaluations.
Within the context of typical development, it is not unusual for a child to show a slight delay in reaching a developmental milestone. Healthcare providers and parents may adopt a wait-and-see approach for some delays with little consequence to the child’s outcome. In the case of early signs of autism spectrum disorder (ASD) that often manifest as developmental delays, however, acting early to evaluate the child’s development and provide early intervention is key to better outcomes. Early identification is defined as having a comprehensive developmental evaluation of possible ASD symptoms no later than age 3, but a growing body of research has shown identification can be accurate and stable at younger ages. Navigating the differences between minor delays and signs of ASD is best conducted by combining forces between parents and health or other early childhood care providers using both ASD screening and developmental surveillance. This chapter outlines guidelines and resources for both screening and surveillance from professional organizations, ASD researchers, and healthcare agencies.
As the prevalence of autism spectrum disorder (ASD) has increased in recent year, so too has the body of research describing the importance of early diagnosis and early intervention. Unfortunately, a large proportion of children with the disorder do not receive a diagnosis until after their fourth birthday. Various reasons exist for late diagnosis, including limited understanding of nuanced early warning signs and limited knowledge of effective early detection mechanisms among healthcare providers. Since early diagnosis enables access to treatment, and early intensive intervention improves long-term developmental outcomes, early detection by pediatric healthcare providers is critical. This article will review ASD prevalence rates, describe correlates and factors that might influence prevalence estimates, and highlight recent advances in early detection methods and intervention services.
This study explored caregivers’ perspectives on facilitators and barriers to screening, diagnosis, and identifying and accessing other services for young children with autism spectrum disorder (ASD); and caregivers’ suggestions for improving the process. Eight focus groups with 55 caregivers were conducted. Four groups had a mix of White, African American, and Asian caregivers, and to gain broader populations, we recruited two groups of Spanish-speaking and two groups of American Indian caregivers. Some caregivers reported that their child and they received excellent services; however, the majority reported concerns about the services they and their child received. The findings also indicated a lower age of diagnosis and a smaller gap between concerns and diagnosis for White non-Hispanic children compared with Hispanic non-White children. Caregivers had many suggestions for ways to improve the process.
Objective:
Recent estimates indicate that most pediatricians do not consistently meet the American Academy of Pediatrics developmental screening guidelines, contributing to the delay of vital evaluations and interventions for autism spectrum disorder (ASD). Our objective was to evaluate the utility of Maintenance of Certification (MOC) Quality Improvement (QI) training designed to improve developmental screening rates in underserved, rural primary care practices. Trainings on best screening practices were disseminated to primary care providers (PCPs) through Extension for Community Healthcare Outcomes (ECHO) Autism, a virtual learning network.
Method:
Across 2 cohorts, 24 PCPs were enrolled in MOC Part 4 training modules delivered through the ECHO Autism QI Learning Network. Throughout the 12 months of enrollment, PCPs reported information on general and ASD-specific developmental screenings conducted at 18- and 24-month well-child visits. A 1-year follow-up was conducted to assess the maintenance of screening rates.
Results:
Baseline rates for general and ASD-specific developmental screenings were 53.3% and 68.3%, respectively. By the end of the 12-month learning module, screening rates increased significantly for general development (88.6%) and ASD-specific screenings (99.0%). At the 1-year follow-up, the rate for general developmental screening was 96.7% and for ASD-specific screening was 97.1%.
Conclusion:
Maintenance of Certification Part 4 training delivered through the ECHO Autism QI Learning Network was found to be incentivizing and highly effective in shaping and maintaining PCP developmental screening practices. Improved screening rates show promise in decreasing time to critical developmental evaluations, interventions, and resources. Our methodology is likely transferable to other ECHO communities and may facilitate expedient implementation of best practice standards in primary care.
Importance
The Extension for Community Health Outcomes (ECHO) model is a widely adopted technology-based model for training primary care physicians and practitioners (PCPs) to care for patients with complex conditions. Despite its popularity, to our knowledge, direct effects of ECHO on clinical practice have not been tested in a large-scale study.
Objective
To test the effectiveness of the ECHO model as applied to primary care for autism and whether it resulted in improved clinical practice, knowledge, and self-efficacy regarding autism screening and comorbidity management.
Design, Setting, and Participants
Primary care physicians and practitioners were recruited to participate in a 6-month ECHO Autism program delivered by 1 of 10 academic medical center sites. A sequential, staggered rollout of ECHO Autism was delivered to 5 cohorts of participants (15 per site; 2 sites per cohort). Sites were randomized after recruitment to cohort/start time. Cohorts launched every 3 months. The ECHO Autism program used videoconferencing technology to connect community-based PCPs with interdisciplinary expert teams at academic medical centers. There were 148 participants (PCPs [family practice physicians, pediatricians, nurse practitioners, and physician assistants] providing outpatient services to underserved children) studied between December 2016 and November 2018.
Interventions
The 6-month ECHO Autism program included twelve 2-hour sessions connecting PCP participants with an interdisciplinary expert team. Sessions included didactics, case-based learning, guided practice, and discussion.
Main Outcomes and Measures
Coprimary outcomes were autism screening practices and comorbidity management (assessed by medical record review). Secondary outcomes were knowledge (assessed by direct testing) and self-efficacy (assessed by self-report survey). Assessments were conducted at baseline, mid-ECHO, post-ECHO, and follow-up (3 months after ECHO).
Results
Ten sites were randomized to 1 of 5 cohorts. Participants were 82% female (n = 108), 76% white (n = 100), and 6% Hispanic or Latino (n = 8); the median age was 46 years (interquartile range, 37-55 years). Significant changes in autism screening and treatment of comorbidities in children with autism were not observed. Participants demonstrated significant improvements in knowledge (9%; 95% CI, 4-13; P < .001) and self-efficacy (29%; 95% CI, 25-32; P < .001).
Conclusions and Relevance
The ECHO model was developed to increase access to high-quality health care for underserved patients with complex conditions. Study results provide support for the model in improving clinician knowledge and confidence but little support for achieving practice change.
Trial Registration
ClinicalTrials.gov Identifier: NCT03677089
A mixed methods approach was used to examine perspectives of 114 primary care providers regarding barriers and needs for support in caring for children with autism. The most common barriers related to lack of knowledge and resources for diagnosing and treating children with autism, and inadequate visit time and reimbursement.
Background
Autism screening remains a major challenge in most French-speaking countries. Two main issues contribute to this problematic situation: unavailability of tests in French and psychometric/ methodological weaknesses of existing instruments. These shortfalls result in late and inadequate referrals to autism specialist clinics, jeopardising both children’s diagnosis and prognosis. This article describes the validation of the Autism Discriminative Tool (ADT), a teacher-rated level-two screener for children aged two to six years. It demonstrates how the ADT specific properties may help reduce actual screening challenges and improve referrals’ adequacy to tertiary autism diagnostic services.
Method
ADT items were prospectively tested in a community-based group (n = 118), children with autism spectrum disorders (ASD; n = 90) and non-ASD children presenting mimicking conditions such as intellectual disabilities, language impairments and various psychological disorders (n = 36). Children in the clinical samples were rated by their teacher at the beginning of a diagnostic assessment process within three specialised autism clinics.
Results
results suggest that a 26-item version performs well as a stage-two screening device, with theoretical sensitivity rate of 0.83, specificity of 0.94 and an overall correct detection rate of 86.5%. Using different cut-off scores categories, results illustrate how inadequate referrals may be avoided as 44% of non-ASD children scored negatively on the questionnaire prior to their evaluation.
Conclusions
based on blind teachers’ ratings, the ADT appears to be a good complementary device to help French-speaking clinicians identify preschoolers needing multidisciplinary ASD diagnostic assessment.
Identifying who is at risk for autism as early as possible and identifying collateral problems is the focus of screening. Unlike diagnosis, the emphasis is on assessing broader populations and narrowing a group who will receive more in depth, precise assessments leading to a final diagnosis. This chapter will review strategies and methodologies for screening.
Background and objective:
Symptoms of inattention, hyperactivity, and impulsivity are core features of attention-deficit/hyperactivity disorder (ADHD). However, children with autism spectrum disorder (ASD) often present with similar symptoms and may receive a diagnosis of ADHD first. We investigated the relationship between the timing of ADHD diagnosis in children with ASD and the age at ASD diagnosis.
Methods:
Data were drawn from the 2011-2012 National Survey of Children's Health, which asked parents to provide the age(s) at which their child received a diagnosis of ADHD and/or ASD. Using weighted prevalence estimates, we examined the association between a previous diagnosis of ADHD and the age at ASD diagnosis, while controlling for factors known to influence the timing of ASD diagnosis.
Results:
Our study consisted of 1496 children with a current diagnosis of ASD as reported by parents of children ages 2 to 17 years. Approximately 20% of these children had initially been diagnosed with ADHD. Children diagnosed with ADHD before ASD were diagnosed with ASD ∼3 years (95% confidence interval 2.3-3.5) after children in whom ADHD was diagnosed at the same time or after ASD. The children with ADHD diagnosed first were nearly 30 times more likely to receive their ASD diagnosis after age 6 (95% confidence interval 11.2-77.8). The delay in ASD diagnosis was consistent across childhood and independent of ASD severity.
Conclusion:
To avoid potential delays in ASD diagnosis, clinicians should consider ASD in young children presenting with ADHD symptoms.
Providing intensive early intervention is critical to maximizing outcomes for children with autism spectrum disorder (ASD), and evidence suggests that the earlier intervention can begin, the better the outcome. The first purpose of this article is to review the earliest indicators of ASD in very young children—social and communication impairments—which have important implications for early identification. The second purpose is to review evidence-based intervention practices for children with ASD and to develop a set of guiding principles for providing intervention for infants and toddlers who are at risk for ASD. Issues that are delineated include providing intervention in natural environments, supporting families in early intervention, and embedding intervention in daily routines.
Early identification of developmental disorders is critical to the well-being of children and their families. It is an integral function of the primary care medical home and an appropriate responsibility of all pediatric health care professionals. This statement provides an algorithm as a strategy to support health care professionals in developing a pattern and practice for addressing developmental concerns in children from birth through 3 years of age. The authors recommend that developmental surveillance be incorporated at every well-child preventive care visit. Any concerns raised during surveillance should be promptly addressed with standardized developmental screening tests. In addition, screening tests should be administered regularly at the 9-, 18-, and 30-month visits. (Because the 30-month visit is not yet a part of the preventive care system and is often not reimbursable by third-party payers at this time, developmental screening can be performed at 24 months of age. In addition, because the frequency of regular pediatric visits decreases after 24 months of age, a pediatrician who expects that his or her patients will have difficulty attending a 30-month visit should conduct screening during the 24-month visit.) The early identification of developmental problems should lead to further developmental and medical evaluation, diagnosis, and treatment, including early developmental intervention. Children diagnosed with developmental disorders should be identified as children with special health care needs, and chronic-condition management should be initiated. Identification of a developmental disorder and its underlying etiology may also drive a range of treatment planning, from medical treatment of the child to family planning for his or her parents.
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 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 developmental milestones their child should be reaching [38]. Similarly, substantially more 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].
Purpose
The authors aimed to compare gesture use in infants with autism with gesture use in infants with other developmental disabilities (DD) or typical development (TD).
Method
Children with autism (n = 43), DD (n = 30), and TD (n = 36) were recruited at ages 2 to 7 years. Parents provided home videotapes of children in infancy. Staff compiled video samples for 2 age intervals (9–12 and 15–18 months) and coded samples for frequency of social interaction (SI), behavior regulation (BR), and joint attention (JA) gestures.
Results
At 9–12 months, infants with autism were less likely to use JA gestures than infants with DD or TD, and less likely to use BR gestures than infants with TD. At 15–18 months, infants with autism were less likely than infants with DD to use SI or JA gestures, and less likely than infants with TD to use BR, SI, or JA gestures. Among infants able to use gestures, infants with autism used fewer BR gestures than those with TD at 9–12 months, and fewer JA gestures than infants with DD or TD at 15–18 months.
Conclusion
Differences in gesture use in infancy have implications for early autism screening, assessment, and intervention.
In 2006, the American Academy of Pediatrics recommended developmental screening of young children with a standardized screening tool as a routine component of well-child care.
To assess the national and state prevalence of standardized, parent-completed developmental screening (DS-PC) in the previous 12 months and evaluate associations between screening and receipt of an early-intervention plan or mental health services for children at higher risk.
Data from the 2007 National Survey of Children's Health were used. Nested t tests were used to compare each state to national prevalence. Logistic and multilevel regression models evaluated variations and associations with DS-PC.
Nationally, 19.5% of children received a DS-PC in the previous 12 months, although the figure varied from 10.7% to 47% across the United States. Prevalence did not rise above 26.7% for any socioeconomic subgroup of children and was highest for younger, black, and publicly insured children and lowest for uninsured children and children with gaps in insurance coverage. Equally high-risk children varied twofold in their probability of receiving early intervention or needed mental health services according to whether they had received a DS-PC.
There is a significant gap between the developmental screening that is recommended and what is reported nationally. When children are not screened consistently, opportunities for early identification, intervention, and treatment may be delayed. Gaps in screening and wide variations across states present considerable opportunities for cross-state learning to improve quality on this critical component of preventive pediatric care. Measurement systems for assessing prevalence and impact of screening require continued evaluation and development.
There is evidence documenting that children are not being diagnosed with autism spectrum disorder (ASD) early enough. This study surveyed allied healthcare providers to determine whether these professionals had received training on the characteristics of ASD and ASD-specific screening strategies through their pre-professional education or continuing education (CE). Additionally, participants were asked about their responsibility for screening children for ASD in their workplace and what would help them be better prepared to perform this type of screening. As a group, speech-language pathologists (SLPs) and occupational therapists (OTs) reported receiving more training on the characteristics of ASD and screening for ASD in both their pre-professional education and CE workshops than reported by the physical therapists (PTs) and physicians assistants (PAs). Overall, the SLPS, OTs, and PTs had attended more CE trainings to gain information on ASD than had PAs. All groups expressed an interest in receiving more information on ASD via on- or off-site trainings. These results provide initial support for allied healthcare providers to become more active in screening and referring children who present with symptoms of ASD. The study also highlights the need for educational institutions to provide future healthcare professionals with the skills to provide appropriate early identification services for children and families.
To examine prospectively the emergence of behavioral signs of autism in the first years of life in infants at low and high risk for autism.
A prospective longitudinal design was used to compare 25 infants later diagnosed with an autism spectrum disorder (ASD) with 25 gender-matched low-risk children later determined to have typical development. Participants were evaluated at 6, 12, 18, 24, and 36 months of age. Frequencies of gaze to faces, social smiles, and directed vocalizations were coded from video and rated by examiners.
The frequency of gaze to faces, shared smiles, and vocalizations to others were highly comparable between groups at 6 months of age, but significantly declining trajectories over time were apparent in the group later diagnosed with ASD. Group differences were significant by 12 months of age on most variables. Although repeated evaluation documented loss of skills in most infants with ASD, most parents did not report a regression in their child's development.
These results suggest that behavioral signs of autism are not present at birth, as once suggested by Kanner, but emerge over time through a process of diminishment of key social communication behaviors. More children may present with a regressive course than previously thought, but parent report methods do not capture this phenomenon well. Implications for onset classification systems and clinical screening are also discussed.
The earliest sign of autism in children is the delayed attainment of social skill milestones, including joint attention, social orienting, and pretend play. Language impairment is a common, but less specific, sign of autism. Repetitive behaviors and restricted interests may not be noted until after social skill and communication impairments are exhibited. Physicians should perform developmental surveillance at all well-child visits, and the American Academy of Pediatrics recommends administering an autism-specific screening tool at the 18- and 24-month visits. A referral for comprehensive diagnostic evaluation is appropriate if concerns arise from surveillance, screening, or parental observations. The goals of long-term management are to maximize functional independence and community engagement, minimize maladaptive behaviors, and provide family and caregiver support. Physicians play an important role in coordinating care through an interdisciplinary team; referring families for specialized services; and treating children's associated conditions, including sleep disturbances, gastrointestinal problems, anxiety, and hyperactivity. Autism is a lifelong condition, but early recognition, diagnosis, and treatment can improve the prognosis, whereas associated medical conditions, psychiatric conditions, and intellectual disability can worsen the prognosis.
To conduct a randomized, controlled trial to evaluate the efficacy of the Early Start Denver Model (ESDM), a comprehensive developmental behavioral intervention, for improving outcomes of toddlers diagnosed with autism spectrum disorder (ASD).
Forty-eight children diagnosed with ASD between 18 and 30 months of age were randomly assigned to 1 of 2 groups: (1) ESDM intervention, which is based on developmental and applied behavioral analytic principles and delivered by trained therapists and parents for 2 years; or (2) referral to community providers for intervention commonly available in the community.
Compared with children who received community-intervention, children who received ESDM showed significant improvements in IQ, adaptive behavior, and autism diagnosis. Two years after entering intervention, the ESDM group on average improved 17.6 standard score points (1 SD: 15 points) compared with 7.0 points in the comparison group relative to baseline scores. The ESDM group maintained its rate of growth in adaptive behavior compared with a normative sample of typically developing children. In contrast, over the 2-year span, the comparison group showed greater delays in adaptive behavior. Children who received ESDM also were more likely to experience a change in diagnosis from autism to pervasive developmental disorder, not otherwise specified, than the comparison group.
This is the first randomized, controlled trial to demonstrate the efficacy of a comprehensive developmental behavioral intervention for toddlers with ASD for improving cognitive and adaptive behavior and reducing severity of ASD diagnosis. Results of this study underscore the importance of early detection of and intervention in autism.
In 2001, the American Academy of Pediatrics (AAP) adopted a policy that all infants and young children should be screened for developmental delays at regular intervals. The policy statement promoted the use of valid reliable instruments. It is unknown, however, what proportion of pediatricians follow this recommendation and whether such a practice is associated with improved identification of children with developmental difficulties.
To describe the use of developmental screening tests among board-certified pediatricians practicing general pediatrics and to determine the association between standardized screening and the self-reported identification of children with developmental difficulties.
We mailed a survey to a random sample of AAP members. We used multivariate logistic/linearregression analyses to determine the association between standardized screening and the self-reported identification of children with developmental disabilities.
Of the 1617 surveys mailed, 894 were returned, for a response rate of 55%. Of the respondents, 646 practiced general pediatrics and were included in the analysis. Seventy-one percent of those pediatricians indicated that they almost always used clinical assessment without an accompanying screening instrument to identify children with developmental delays. Only 23% indicated that they used a standardized screening instrument. The most commonly used instrument was the Denver II. Logistic regression modeling demonstrated odds ratios between 1.71 and 1.90 for a >10% rate of identification of developmental problems among patients of pediatricians reporting standardized screening. Each adjusted odds ratio bordered on statistical significance. Linear-regression models estimating the difference in mean proportions of children identified with developmental problems across screening groups failed to show a statistically or clinically significant difference in physician-reported identification rates.
Our findings indicate that, despite the AAP policy and national efforts to improve developmental screening in the primary care setting, few pediatricians use effective means to screen their patients for developmental problems. It is uncertain whether standardized screening, as it is practiced currently, is associated with an increase in the self-reported identification of children with developmental disabilities.
Autism spectrum disorders are not rare; many primary care pediatricians care for several children with autism spectrum disorders. Pediatricians play an important role in early recognition of autism spectrum disorders, because they usually are the first point of contact for parents. Parents are now much more aware of the early signs of autism spectrum disorders because of frequent coverage in the media; if their child demonstrates any of the published signs, they will most likely raise their concerns to their child's pediatrician. It is important that pediatricians be able to recognize the signs and symptoms of autism spectrum disorders and have a strategy for assessing them systematically. Pediatricians also must be aware of local resources that can assist in making a definitive diagnosis of, and in managing, autism spectrum disorders. The pediatrician must be familiar with developmental, educational, and community resources as well as medical subspecialty clinics. This clinical report is 1 of 2 documents that replace the original American Academy of Pediatrics policy statement and technical report published in 2001. This report addresses background information, including definition, history, epidemiology, diagnostic criteria, early signs, neuropathologic aspects, and etiologic possibilities in autism spectrum disorders. In addition, this report provides an algorithm to help the pediatrician develop a strategy for early identification of children with autism spectrum disorders. The accompanying clinical report addresses the management of children with autism spectrum disorders and follows this report on page 1162 [available at www.pediatrics.org/cgi/content/full/120/5/1162]. Both clinical reports are complemented by the toolkit titled "Autism: Caring for Children With Autism Spectrum Disorders: A Resource Toolkit for Clinicians," which contains screening and surveillance tools, practical forms, tables, and parent handouts to assist the pediatrician in the identification, evaluation, and management of autism spectrum disorders in children.
Early diagnosis and referral to treatment prior to age 3-5 years improves the prognosis of children with Autism Spectrum Disorder (ASD). However, ASD is often not diagnosed until age 3-4 years, and medical providers may lack training to offer caregivers evidence-based treatment recommendations. This study tested hypotheses that 1) children with ASD would be diagnosed between ages 3-4 years (replicating prior work), 2) caregivers would receive little information beyond the diagnosis from their medical providers, and 3) caregivers would turn to other sources, outside of their local health care professionals, to learn more about ASD.
146 ASD caregivers responded to an online survey that consisted of questions about demographics, the diagnostic process, sources of information/support, and the need and availability of local services for ASDs. Hypotheses were tested using descriptives, regression analyses, analyses of variance, and chi-squared.
The average age of diagnosis was 4 years, 10 months and the mode was 3 years. While approximately 40% of professionals gave additional information about ASD after diagnosis and 15-34% gave advice on medical/educational programs, only 6% referred to an autism specialist and 18% gave no further information. The diagnosis of Autism was made at earlier ages than Asperger's Disorder or PDD-NOS. Developmental pediatricians (relative to psychiatrists/primary care physicians, neurologists, and psychologists) were associated with the lowest age of diagnosis and were most likely to distribute additional information. Caregivers most often reported turning to the media (i.e., internet, books, videos), conferences, and other parents to learn more about ASD.
The average age of ASD diagnosis (4 years, 10 months) was later than optimal if children are to receive the most benefit from early intervention. Most professionals gave caregivers further information about ASDs, especially developmental pediatricians, but a sizeable minority did not. This may reflect a lack of training in the wide range of behaviors that occur across the autism spectrum. Parents turned to outside sources to learn more about ASD. We recommend that all physicians receive specialized training about ASDs to improve upon early screening and diagnosis, and then advise caregivers about empirically-supported services.
The primary aim of the research was to find the delay between the first symptoms of an autistic disorder being recognized by parents and diagnosis in our centre. A secondary objective was to evaluate the number of contacts with professionals (physicians, teachers, and speech therapists) in which parents pointed out special manifestations seen in children and, in spite of that, the children were not referred to a specialist. A retrospective study assessed 204 children (59 girls, 145 boys) in total; 126 children (39 girls, 87 boys) with childhood autism (CHA), 57 (17 girls, 40 boys) with atypical autism (AA), and 21 (3 girls, 18 boys) with Asperger's syndrome (AS). The mean age at appearance of the first signs was 29.7 months (range 0-70, median 30+/-17.0) in N=201, and the average age at diagnosis was 81.5 months (range 13-276, median 69.5+/-45.2) in N=204. The mean delay in making a diagnosis was 51.3 months (range 0-246, median 39+/-40.9) in N=201. The delay in diagnosis is shortest in patients with AA (a mean period of 44.4 months = 3 years and 8 months), longer in CHA patients (49.5 months = 4 years and 2 months), and longest in patients with AS (80.8 months = 6 years and 9 months). A statistically significant difference in the period to diagnosis was found between CHA and AS patients (p=0.023) and between AA and AS patients (p=0.019). The mean number of visits to physicians and other specialists before referring to a specialized centre for diagnosis in N=133 was 2.4 (range 1-5, median 2+/-0.9). The diagnosis of autism is made late and early educational and behavioural interventions cannot be initiated.
Early intervention for children with autism is currently a politically and scientifically complex topic. Randomized controlled trials have demonstrated positive effects in both short-term and longer term studies. The evidence suggests that early intervention programs are indeed beneficial for children with autism, often improving developmental functioning and decreasing maladaptive behaviors and symptom severity at the level of group analysis. Whether such changes lead to significant improvements in terms of greater independence and vocational and social functioning in adulthood is also unknown. Given the few randomized controlled treatment trials that have been carried out, the few models that have been tested, and the large differences in interventions that are being published, it is clear that the field is still very early in the process of determining (a) what kinds of interventions are most efficacious in early autism, (b) what variables moderate and mediate treatment gains and improved outcomes following intervention, and (c) the degree of both short-term and long-term improvements that can reasonably be expected. To examine these current research needs, the empirical studies of comprehensive treatments for young children with autism published since 1998 were reviewed. Lovaas's treatment meet Chambless and colleague's (Chambless et al., 1998; Chambless et al., 1996) criteria for "well-established" and no treatment meets the "probably efficacious" criteria, though three treatments meet criteria for "possibly efficacious" (Chambless & Hollon, 1998). Most studies were either Type 2 or 3 in terms of their methodological rigor based on Nathan and Gorman's (2002) criteria. Implications of these findings are also discussed in relation to practice guidelines as well as critical areas of research that have yet to be answered.
Twenty children who presented with severe interactional and communication difficulties at age 2 underwent a comprehensive assessment for autism, and were reassessed at age 4-5. In common with other recent studies, diagnosis of autistic spectrum disorders at age 2 was found to be reliable and stable. The communication and social skills of the children showed little change overall by the second assessment. However, children whose scores deteriorated in the social domain tended to have presented initially with more significant behaviour problems. Few repetitive behaviours were observed at age 2, whereas these were more apparent by age 4-5. The finding that early diagnosis of autism is reliable and stable has led to the development of an early diagnostic service in Southampton, which is described. The importance of early diagnosis is that it opens the door to early intervention programmes, which in turn prevent many problems from occurring in later life.
Autism and its milder variants are not rare. Most pediatricians will have the opportunity to provide a medical home for a child with autism. This technical report serves to complement and expand on the information in the accompanying policy statement to increase the pediatrician's fund of knowledge and comfort level in caring for children with autism. In so doing, it is anticipated that earlier diagnosis and referral for appropriate intervention will be possible and that this will, in turn, have a positive effect on long-term outcomes for children with autism and their families.
Early intervention for autism spectrum disorders necessitates early detection. This need has led to widespread agreement across disciplines that screening is critical in very young children. Two screening issues are highlighted in this review. Level of screening refers to the type of sample: Level I is defined as an unselected sample, and Level II consists of selected children already identified as being at risk for a developmental disorder. Breadth or scope of screening refers to the range of difficulties the screening tool attempts to identify: broad screening instruments identify multiple range of developmental difficulties, whereas disorder-specific tools focus on a single disorder or class of disorders. Broad developmental instruments reviewed include the Parents' Evaluation of Developmental Status and the Ages and Stages Questionnaires; autism-specific tools reviewed include the Checklist for Autism in Toddlers, the Modified Checklist for Autism in Toddlers (M-CHAT), the Pervasive Developmental Disorders Screening Test, Second Edition, and the Screening Tool for Autism in Two-year-olds. The development of the M-CHAT, a Level I and Level II screening instrument, is described, and current research and clinical use of the M-CHAT are reviewed, including description of the structured follow-up interview which reduces the false-positive rate of the parent-report M-CHAT.
This study explored North Carolina pediatric healthcare professional's (PHP) perceptions of screening 12-18 month old infants for Autism Spectrum Disorder (ASD). Eight focus groups (66 PHPs) were conducted across practice settings. The purpose was to explore PHP's perspectives to: inform development of ASD screening tools and ultimately impact their use in PHP settings. PHPs reported concerns, barriers, and the need for research to support early ASD screening. Additionally, they expressed the need for: (a) clear "red flags" of ASD for 12-18 month olds; (b) socioculturally sensitive and effective screening tools; (c) effective early interventions; (d) systems to handle potential increases in referrals; and (e) continuing education. PHPs also demonstrated preferences about screening tool characteristics and processes for enhancing screening efforts.
A reliable diagnosis of autism can be made as early as 24 months, yet in many children diagnoses are made much later. A delay in diagnosis translates into a missed opportunity to provide early intervention services and to improve outcomes. The aim of the current study was to review the literature on early detection approaches in primary care and other community settings in the United States.
A search was conducted of the peer-reviewed and gray literature to identify studies published from January 1990 through January 2013 testing approaches to enhance the early detection of autism in community settings in the United States.
The search identified 40 studies describing 35 approaches, which were grouped into the following categories: awareness (n = 4), routine screening (n = 21), and practice improvement to enhance screening (n = 10). Awareness approaches were associated with positive changes in knowledge of autism-related topics. Routine screening yielded high or increased rates of screening and referrals; however, few studies assessed the effect of screening on age at diagnosis or services enrollment. Practice improvement approaches resulted in increased screening and referral rates and highlighted the importance of adopting a multipronged approach to enhance early detection.
Although studies that tested screening approaches in community settings found positive results, the effectiveness of such efforts on reducing time to diagnosis and services enrollment remains largely untested. The fact that few studies reported outcomes beyond rates of referral indicates the need for enhanced methodological rigor, particularly with respect to length of follow-up and quality of measures used.
Since 2000, there has been an increasing emphasis on screening for autism spectrum disorders (ASD) during well-child visits (P. A. Filipek et al., 2000; C. P. Johnson & S. M. Myers, 2007). Pediatricians surveyed in 2 mid-Atlantic states reported extremely low rates of screening for ASD (8% of participants) in comparison with higher rates of general developmental screening (80%; S. dosReis, C. L. Weiner, L. Johnson, & C. J. Newschaffer, 2006). The current study was an extension of the study by S. dosReis et al and targeted a different geographic area (ie, southern states). Both pediatricians and family physicians were recruited to participate in the survey by using paper-pencil and online survey methods. Results revealed a high rate of general developmental screening for both pediatricians and family physicians. Despite participants' acknowledgment of increased prevalence rates of ASD, low rates of screening for ASD were reported (28%) and important barriers were identified. In light of these results, alternative and creative solutions to improve screening practices are discussed.
The association between, and stability of, clinical diagnosis and diagnosis derived
from the Autism Diagnostic Interview-Revised (ADI-R; Lord, Rutter, & Le Couteur, 1994) was
examined in a sample of prospectively identified children with childhood autism and other
pervasive developmental disorders assessed at the age of 20 months and 42 months. Clinical
diagnosis of autism was stable, with all children diagnosed with childhood autism at age 20
months receiving a diagnosis of childhood autism or a related pervasive developmental
disorder (PDD) at age 42 months. Clinical diagnosis of childhood autism was also
reasonably sensitive, with all children who went on to receive a clinical diagnosis of
childhood autism at 42 months being identified as having autism or PDD at 20 months.
However, clinical diagnosis for PDD and Asperger's syndrome lacked sensitivity at 20
months, with several children who subsequently received these diagnoses at 42 months
receiving diagnoses of language disorder or general developmental delay, as well as in two
cases being considered clinically normal, at the earlier timepoint. The ADI-R was found to
have good specificity but poor sensitivity at detecting childhood autism at 20 months;
however, the stability of diagnosis from 20 to 42 months was good. In addition, the ADI-R
at age 20 months was not sensitive to the detection of related PDDs or Asperger's syndrome.
The continuity and discontinuity between behavioural abnormalities identified at both
timepoints in the three domains of impairment in autism was examined, both in children who
met final clinical criteria for an autistic spectrum disorder, and for children with language
disorder who did not, as well as for a small sample of typically developing children.
Autism spectrum disorders (ASDs), also called pervasive developmental disorders in the Diagnostic and Statistical Manual of Mental Disorders (Fourth Edition, Text Revised), constitute a group of neurodevelopmental disorders that coalesce around a common theme of impairments in social functioning, communication abilities, and repetitive or rigid behaviors. The ASDs considered here include autism/autistic disorder, Asperger disorder/Asperger syndrome (AS), and pervasive developmental disorder not otherwise specified. This article focuses on autism/autistic disorder screening and its early identification, with a brief mention for AS screening, as there are limited tools and no recommendation for universal screening for AS.
The increasing prevalence of autism spectrum disorders as well as emerging evidence of the efficacy of early intervention has focused attention on the need for early identification of young children suspected of having an ASSD. Several studies have suggested that while parents report concerns early in development, it may be months before children can be evaluated and services provided, and these delays may be even more marked in under-served populations. The American Academy of Pediatrics recently recommended universal screening for autism spectrum disorders at the 18- and 24-month well-child pediatric visit. The authors review several early screening tools currently in use and offer recommendations for integrating autism specific screening into primary care practice.
To determine the feasibility of implementing a broadband screen at the 1-year check-up to detect cases of autism spectrum disorders (ASD), language delay (LD), and developmental delay (DD).
The Communication and Symbolic Behavior Scales Developmental Profile Infant-Toddler Checklist was distributed at every 1-year pediatric check-up; 137 pediatricians and 225 infants participated. Screens were scored immediately, and failures referred for further evaluation.
Pediatricians screened 10 479 infants at the 1-year check-up; 184 infants who failed the screen were evaluated and tracked. To date, 32 infants received a provisional or final diagnosis of ASD, 56 of LD, nine of DD, and 36 of "other." Five infants who initially tested positive for ASD no longer met criteria at follow-up. The remainder of the sample was false positive results. Positive predictive value was estimated to be .75.
The 1-Year Well-Baby Check-Up Approach shows promise as a simple mechanism to detect cases of ASD, LD, and DD at 1 year. This procedure offers an alternative to the baby sibling design as a mechanism to study autism prospectively, the results of which will enrich our understanding of autism at an early age.
The goal of this study was to investigate the feasibility and outcome of a systematic autism screening process for all toddlers (aged 14-30 months) in a large, community-based pediatric practice.
All toddlers who presented to the clinic during the 6-month screening period were eligible. We used 2 screening questionnaires and allowed physicians to refer directly to capture as many children as possible. Receptionists and medical assistants distributed and collected screening questionnaires; research staff did all scoring and follow-up, either by telephone or in person when indicated.
We obtained a high rate of screening (80% of eligible children). Of the 796 children screened, 3 had already been diagnosed with an autism spectrum disorder (ASD); an additional 10 children who showed signs of early ASD that warranted further evaluation or intervention were identified. Formal screening measures identified more children with ASD than did clinical judgment or caregiver concerns; however, no single method (ie, questionnaire, caregiver concerns, provider concerns) identified all children with signs of early ASD. We had excellent participation from racially and ethnically diverse families, including Spanish-speaking families. Thirty-two percent of the children who were screened did not present for a well-child visit during the study period and were screened at a sick visit, follow-up visit, or injection appointment.
A partnership between pediatricians and autism specialists resulted in effective, systematic autism screening. Future studies should examine how to create effective systems of care.
This project describes current general developmental and autism screening practices of pediatricians in the United States following the latest practice guidelines published by the American Academy of Pediatrics (AAP) in November 2007. It compares results to data collected in previous surveys on this topic, which suggest that pediatricians are not following the AAP guidelines despite repeated recommendations to do so over the past 8 years. A 110-question web-based survey was made available to 3863 potential participants via an invitation letter sent out by email. Questions about developmental screening practices, knowledge of reimbursement for screening, training, and knowledge of the latest AAP practice guidelines on developmental screening were asked. Results from the analysis of distribution frequencies indicated that a majority of respondents are not familiar with current AAP guidelines on general developmental and autism-specific screening. Furthermore, only 42% reported routinely screening for autism. In terms of barriers, it was found that 28% of those who do not routinely screen specifically for autism reported that they rely primarily on clinical observations instead of using a standardized screening tool as recommended. Twenty-seven percent identified lack of familiarity with autism screeners as the reason. Sixty-six percent of the respondents in this survey admitted never having billed for reimbursement for brief developmental screening using CPT code 96110, and over 85% have never used CPT code 96111 to obtain reimbursement for extended developmental screening. Ninety-five percent of the respondents believe that there is currently an "Average" (35%) or "Above Average" (60%) need for professional postdoctoral training related to developmental delays and autism spectrum disorders. The data from this survey indicate that pediatricians continue to fall short in meeting the AAP recommended practice guidelines on developmental and autism-specific screening and that comprehensive professional training is needed to address this problem. Dissertation Chair: Dr. Krys Kaniasty Dissertation Committee Members: Dr. Cora Lou Sherburne and Dr. Catherine Raeff
Primary care physicians can enhance the health and quality of life of children with autism by providing high-quality and comprehensive primary care.
To explore physicians' perspectives on primary care for children with autism.
National mail and e-mail surveys were sent to a random sample of 2325 general pediatricians and 775 family physicians from April 2007 to October 2007.
The response rate was 19%. Physicians reported significantly lower overall self-perceived competency, a greater need for primary care improvement, and a greater desire for education for children with autism compared with both children with other neurodevelopmental conditions and those with chronic/complex medical conditions. The following barriers to providing primary care were endorsed as greater for children with autism: lack of care coordination, reimbursement and physician education, family skeptical of traditional medicine and vaccines, and patients using complementary alternative medicine. Adjusting for key demographic variables, predictors of both higher perceived autism competency and encouraging an empirically supported therapy, applied behavior analysis, included having a greater number of autism patient visits, having a friend or relative with autism, and previous training about autism.
Primary care physicians report a lack of self-perceived competency, a desire for education, and a need for improvement in primary care for children with autism. Physician education is needed to improve primary care for children with autism. Practice parameters and models of care should address physician-reported barriers to care.
The association between, and stability of, clinical diagnosis and diagnosis derived from the Autism Diagnostic Interview-Revised (ADI-R; Lord, Rutter, & Le Couteur, 1994) was examined in a sample of prospectively identified children with childhood autism and other pervasive developmental disorders assessed at the age of 20 months and 42 months. Clinical diagnosis of autism was stable, with all children diagnosed with childhood autism at age 20 months receiving a diagnosis of childhood autism or a related pervasive developmental disorder (PDD) at age 42 months. Clinical diagnosis of childhood autism was also reasonably sensitive, with all children who went on to receive a clinical diagnosis of childhood autism at 42 months being identified as having autism or PDD at 20 months. However, clinical diagnosis for PDD and Asperger's syndrome lacked sensitivity at 20 months, with several children who subsequently received these diagnoses at 42 months receiving diagnoses of language disorder or general developmental delay, as well as in two cases being considered clinically normal, at the earlier timepoint. The ADI-R was found to have good specificity but poor sensitivity at detecting childhood autism at 20 months; however, the stability of diagnosis from 20 to 42 months was good. In addition, the ADI-R at age 20 months was not sensitive to the detection of related PDDs or Asperger's syndrome. The continuity and discontinuity between behavioural abnormalities identified at both timepoints in the three domains of impairment in autism was examined, both in children who met final clinical criteria for an autistic spectrum disorder, and for children with language disorder who did not, as well as for a small sample of typically developing children.
Autism is a common disorder of childhood, affecting 1 in 500 children. Yet, it often remains unrecognized and undiagnosed until or after late preschool age because appropriate tools for routine developmental screening and screening specifically for autism have not been available. Early identification of children with autism and intensive, early intervention during the toddler and preschool years improves outcome for most young children with autism. This practice parameter reviews the available empirical evidence and gives specific recommendations for the identification of children with autism. This approach requires a dual process: 1) routine developmental surveillance and screening specifically for autism to be performed on all children to first identify those at risk for any type of atypical development, and to identify those specifically at risk for autism; and 2) to diagnose and evaluate autism, to differentiate autism from other developmental disorders.
Progress has recently been made in the earlier identification of children with autism spectrum disorder (ASD). Whilst being welcome, this progress to earlier referral and diagnosis presents new challenges to clinical practice, including the accuracy and stability of early diagnosis, the utility of standardised assessment instruments with young pre-schoolers and the ability to indicate prognosis.
A selective review of recent research literature on the characteristic features of ASD in preschool children.
Multidisciplinary diagnostic assessment should include detailed information on developmental history, parents' descriptions of the everyday behaviour and activities of the child, direct assessment of the child's social interaction style, including where possible with age peers, and formal assessment of communicative, intellectual and adaptive function. Clinical assessments need to concentrate on the identification of impairments in early non-verbal social communication behaviours that characterise children with ASD from the second year of life, including social orienting, joint attention, imitation, play and reciprocal affective behaviour. The particular pattern of symptoms that presents in a 2-year-old with ASD may differ from that seen at the more prototypic age of 4 or 5 years. In particular, overt repetitive and stereotyped behaviours may be less notable, although where these are seen alongside the social and communicative impairments they are highly indicative of ASD. The use of standardised assessment instruments and the strict application of the DSM and ICD diagnostic criteria need to be employed with caution, as an expert clinical view has been shown to be more accurate. An important aspect of early diagnostic consultation is an open and straightforward approach to the negotiation of the diagnostic view with parents over time.
Earlier diagnosis and rising recognition of ASD have significant implications for primary healthcare and specialist diagnostic and therapeutic services.
Twenty children who presented with severe and communication difficulties at age 2 underwent a comprehensive assessment for autism, and were reassessed at age 4-5. In common with other recent studies, diagnosis of autistic spectrum disorders at age 2 was found to be reliable and stable. The communication and social skills of the children showed little change overall by the second assessment. However, children whose scores deteriorated in the social domain tended to have presented initially with more significant behaviour problems. Few repetitive behaviours were observed at age 2, whereas these were more apparent by age 4-5. The finding that early diagnosis of autism is reliable and stable has led to the development of an early diagnostic service in Southampton, which is described. The importance of early diagnosis is that it opens the door to early intervention programmes, which in turn prevent many problems from occurring in later life.
Little is known about the current practices of primary care physicians regarding developmental surveillance and screening during pediatric preventive care visits. We conducted a mailed survey of a random national sample of pediatricians and family physicians to describe their practices and identify factors that predict use of developmental screening tools, an efficacious way of identifying children with developmental delays. Most physicians reviewed developmental milestones and prompted parents for developmental concerns at preventive care visits. Approximately half of the physicians used a formal developmental screening instrument. Female physician gender predicted higher rates of use of screening tools for family physicians, but not for pediatricians. Most physicians seemed committed to the early diagnosis of developmental delays. Substantial variability in surveillance and screening practices, barriers of time and reimbursement, and under-reliance on parent-completed questionnaires underscore areas for improvement.
Although initially described as an inborn disorder of affective contact, information on autism as it exists in infants has been limited. Delays in diagnosis, lack of information about the condition, and reliance on retrospective research strategies have been problematic. An awareness of the increased risk for siblings is now allowing the development of new, prospective approaches. Consistent with Kanner's original hypothesis, the available information strongly suggests a fundamental difficulty in the earliest social processes, which, in turn, impacts many other areas of development. New approaches to screening have lowered the age of initial diagnosis; this presents new challenges for early intervention. Directions for future research are highlighted.
The aims of the present study were to describe variations in the early course of development in autism by utilizing an in-depth parent interview that incorporated techniques to improve accuracy of parent recall, and to examine the relation between variations in early developmental course in autism and behavioral outcome at 3-4 years of age. The Early Development Interview, which consisted of questions about child's behavior in several domains from birth through 2 years of age, was created and administered to parents of 72 3-4-year-old children with autism spectrum disorder and 34 3-4-year-old children with developmental delay, who were matched on mental and chronological age, and 39 1-4-year-old typically developing children, who were matched to the clinical groups on mental age. At 3-4 years of age, children were administered standardized measures (some clinician administered and some parent report); these included verbal and nonverbal IQ, autism symptom severity, and adaptive and aberrant behavior. Based on the Early Development Interview, children with autism spectrum disorder (ASD) were reported to have elevated symptoms in the social and regulatory domains by 3-6 months. By 12-15 months, parents of children with ASD reported significantly higher levels of social symptoms than parents of children with developmental delay. At 3-4 years of age, children with autism with early vs. late onset of symptoms, and with vs. without a history of loss of skills (regression) were not found to differ on standardized tests of verbal and nonverbal IQ and observational measures of autism symptom severity.
The current study extends research by Stone [Cross-disciplinary perspectives on autism? Journal of Pediatric Psychology, 12, (1988) 615; A comparison of teacher and parent views of autism. Journal of Autism and Development Disorders, 18, (1988) 403] exploring the knowledge and beliefs about autism across multiple health care professions. One hundred and eleven CARD personnel (i.e., professional with the Center for Autism Related Disabilities, CARD), specialists (i.e., psychiatry, speech and language pathology, and clinical psychology), and primary health care providers (i.e., family practice, pediatrics, and neurology) completed a measure assessing knowledge of diagnostic criteria, course, treatment, and prognosis of autism. Results indicated that all three groups reflected accurate endorsement of the DSM-IV criteria. Primary health care providers and specialists were found to differentially endorse a variety of statements regarding prognosis, course, and treatment in comparison with CARD. Overall, primary providers demonstrated the greatest number of differences. Clinical implications and future recommendations are discussed.
It is unclear to what extent general developmental/behavioral assessments are performed, if screening for autism spectrum disorders (ASDs) is being conducted, and what the barriers to providing such assessments are in routine pediatric practice. Therefore, this study examines (1) the factors influencing the use of general developmental and autism-specific screening tools in primary care pediatric practice, (2) the barriers to providing these assessments, and (3) pediatricians' beliefs regarding ASD prevalence. A cross-sectional survey was mailed in June 2004 to a 60% (n = 1119) random sample of Maryland and Delaware licensed pediatricians. In August 2004, a second mailing was sent to non-respondents. A total of 471 (42%) of the surveys were returned, and of those, 255 (54%) who practiced in general primary care were eligible. The sample was 47% male, 69% had more than 14 years' experience, 71% were in private practices, and 56% had fewer than 10 ASD patients. Most (82%) routinely screened for general developmental delays, but only 8% screened for ASD. The main reasons reported for not screening for ASD were lack of familiarity with tools (62%), referred to a specialist (47%), or not enough time (32%). Most specialist referrals (77%) were to a developmental pediatrician. Most pediatricians (71%) believed that ASD prevalence has increased, and nearly all attributed this to changes in diagnostic criteria and treatment. Service system limitations must be overcome to increase awareness and familiarity with screening tools, provide sufficient time and resources, improve screening, and enhance provider education.
Early identification of young children with an autism spectrum disorder (ASD) can lead to earlier entry into intervention programs that support improved developmental outcomes. The purpose of the present study was to examine identification and diagnostic patterns of children with ASD who live in a large metropolitan area. One hundred fifteen 8-year-old children diagnosed with ASD were identified from a population-based surveillance system at the Centers for Disease Control and Prevention. Primary variables of interest included earliest age of evaluation and earliest age of diagnosis identified from surveillance records, type of initial ASD diagnosis, evaluation sources that documented first ASD diagnosis, characteristics of professionals assigning first ASD diagnosis, and diagnostic tools used to aid the diagnostic process. We found that children with ASD identified by the surveillance system were initially evaluated at a mean of 48 months but were not diagnosed with ASD until a mean age of 61 months. There were no differences in timing of diagnosis based on sex or racial/ethnic classification, although degree of impairment associated with ASD predicted mean age at first evaluation and mean age at first ASD diagnosis. Most children were identified at non-school sources, such as hospitals and clinics; 24% of the sample did not receive a documented ASD diagnosis until entering school. Most practitioners (70%) did not use a diagnostic instrument when assigning the first ASD diagnosis. Implications for early identification of ASD are discussed.
Early intervention for autism spectrum disorders necessitates early detection. This need has led to widespread agreement across disciplines that screening is critical in very young children. Two screening issues are highlighted in this review. Level of screening refers to the type of sample: Level I is defined as an unselected sample, and Level II consists of selected children already identified as being at risk for a developmental disorder. Breadth or scope of screening refers to the range of difficulties the screening tool attempts to identify: broad screening instruments identify multiple range of developmental difficulties, whereas disorder-specific tools focus on a single disorder or class of disorders. Broad developmental instruments reviewed include the Parents' Evaluation of Developmental Status and the Ages and Stages Questionnaires; autism-specific tools reviewed include the Checklist for Autism in Toddlers, the Modified Checklist for Autism in Toddlers (M-CHAT), the Pervasive Developmental Disorders Screening Test, Second Edition, and the Screening Tool for Autism in Two-year-olds. The development of the M-CHAT, a Level I and Level II screening instrument, is described, and current research and clinical use of the M-CHAT are reviewed, including description of the structured follow-up interview which reduces the false-positive rate of the parent-report M-CHAT.
ASD screening and diagnostic practices: Survey of physicians
- K L Coufal
- T Self
- J Rajagopalan
Editorials: Controversies in family medicine
- P H Lipkin
- S L Hyman