At-a-Glance

The Autism Diagnostic Observation Schedule, Second Edition (ADOS-2) test may not be necessary for clinicians to diagnose autism in most children.

Background: ASD is diagnosed according to traits described in the Diagnostic and Statistical Manual of Mental Disorders (Fifth Edition) (DSM-5), including challenges in social communication and social behavior and the presence of restricted, repetitive behaviors or interests. Autism can be diagnosed during a clinical evaluation solely using the DSM-5. However, another assessment called the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2) is also frequently used to diagnose autism in young children. The ADOS is an activity-based assessment of communication skills, social interaction, and imaginative use of materials. ADOS diagnoses are often required to obtain insurance coverage for interventions and services. ADOS assessments take 45-60 minutes and must be done by trained specialists. Limited access to specialists, long waitlists, and high appointment costs can hinder diagnosis and access to support programs, particularly among racial and ethnic minorities, families living in rural areas, and families of lower socioeconomic status. Furthermore, evaluation of the ADOS tool has been limited to research settings. Given limited information on the use of ADOS in clinical settings, the authors of this paper sought to examine the consistency of diagnoses using the ADOS and the DSM-5.

Methods & Findings: Participants in this study included 349 children, ages 18 months to 6 years, who were referred for ASD diagnostic evaluation. Children were evaluated by developmental behavioral pediatricians (DBPs) trained in diagnosing autism. For each child, the DBPs first assessed potential autism according to DSM-5 diagnostic criteria, using all available information (medical and developmental history; direct clinician assessment and physical examination; interaction with the child and family; and information from all available assessments of language, cognitive, and adaptive function). The ADOS was then administered to all participating children, after which the clinician again recorded their diagnostic conclusion (this time incorporating information from the ADOS). The DBPs also self-rated how certain they were about their diagnosis, both before and after administration of the ADOS. The study results revealed 90% agreement between diagnoses made with versus without the ADOS. The most significant predictor of consistency between the two diagnoses was the degree of clinician diagnostic certainty at the time of the first diagnosis (i.e., without the ADOS). The two diagnoses were also more likely to be consistent for children who had more pronounced behavioral or social traits that are common among autistic children.

Implications: ASD diagnostic assessments that do not include the ADOS are less expensive and less time consuming. The findings from this study suggest that, in most cases, the ADOS is not necessary for DBPs and potentially other highly trained specialist clinicians to diagnose autism. The authors suggest that to streamline assessments and reduce barriers to services access, the ADOS should not be required by insurers, early intervention programs, school intervention programs, or behavioral health providers. However, the ADOS may still be helpful in certain cases, for example, when DBPs or other highly trained clinicians are unsure about a diagnosis or when assessing older children for autism.

At-a-Glance

Measurement bias may contribute to underdiagnosis or late diagnosis of autism in girls, highlighting the need to improve detection methods for girls and ensure access to interventions based on need, regardless of formal diagnosis.

Background: Tools used to diagnose ASD were largely developed based on how autism presents in boys. ASD is diagnosed in approximately four times as many boys as girls, but it is unclear if this difference is due to biases in diagnostic criteria or true differences in biology. Among children who have a sibling with autism, the ratio of boys to girls with ASD is lower at 3 to 1. In this study, researchers examined children with autistic siblings to assess potential sex-based diagnostic biases.

Methods & Findings: Children with older siblings with ASD were assessed for early indicators of autism using multiple measures at ages 6-9, 12-15, 24, and 36-60 months. Researchers used statistical modeling to correct for sex-based measurement bias and then grouped children based on changes over time in social communication (SC) and restricted and repetitive behaviors (RRB). For both SC and RRB, they identified a group of “higher concern” and a group of “lower concern”. In the higher concern group, the ratio of boys to girls was approximately 1 to 1. However, the ratio of boys to girls diagnosed with autism at the 24-month visit was closer to 3 to 1. Among the girls who were in the group of higher concern but did not receive an ASD diagnosis, the researchers noted that many had average or above average language skills but had difficulties conversing and some RRBs. The clinicians conducting the assessments often recommended monitoring girls in this group but were more likely to ascribe behavioral differences to factors such as emotion regulation or shyness instead of autism.

Implications: Findings from this study suggest that sex-based differences in autism diagnoses are likely influenced by differences in social skills and measurement bias. Differences in nonverbal social behavior (such as eye contact) may also be interpreted differently in girls. Using current diagnostic tools, girls who may show autism-related concerns may never meet the threshold for diagnosis. This may contribute to disparities in diagnoses and access to support programs and behavioral health supports. Enhanced focus on subtle RRBs and social differences may help improve detection and diagnosis of autism in girls. This study further demonstrates the need for better assessment tools for use in girls and underscores the importance of ensuring that interventions to improve social interaction and emotion regulation are accessible without the need for a formal ASD diagnosis.

At-a-Glance

Telehealth evaluations for autism diagnoses in young children showed high satisfaction rates among providers and caregivers, indicating their potential to increase access and reduce wait times.

Background: Families may face difficulties accessing diagnostic evaluations for autism in young children for many reasons, including shortages of trained specialists, long wait lists, and limited access in rural and under-resourced areas. The COVID-19 pandemic increased these difficulties but also presented the potential for telehealth to increase access to diagnostic evaluations. Initial studies of remote autism diagnostic evaluations suggested that most providers and caregivers were satisfied with the process, but some healthcare providers and caregivers expressed concerns about technology barriers (e.g., limited broadband internet access), distractions in home environments, and audio/video distortions. However, published data on telehealth diagnostic evaluations remains limited, particularly regarding whether provider and caregiver satisfaction with telehealth evaluations differs based on diagnostic outcome, demographics (e.g., child race/ethnicity, household income), and degree of technology issues encountered.

Methods & Findings: Researchers surveyed provider and caregiver satisfaction for autism telehealth diagnostic evaluations of 308 children between the ages of 14 and 78 months who were referred to Riley Hospital for Children in Indianapolis, IN, between May 2020 and June 2021. These parents were offered the telehealth diagnostic evaluation after the hospital canceled in-person evaluations due to the COVID-19 pandemic. Participating providers included seven psychologists and four pediatricians with neurodevelopmental training, who evaluated signs of potential autism using the TELE-ASD-PEDS assessment and adaptive functioning using the Vineland Adaptive Behavior Scale. Most providers (94%) and caregivers (88%) rated their overall satisfaction as “Satisfied” or “Very satisfied.” Caregivers of children with more pronounced traits of autism and lower adaptive functioning were more satisfied with telehealth evaluations compared to caregivers of children with less pronounced traits. Caregiver satisfaction did not differ based on race/ethnicity, age, household income, type of insurance, or travel time saved. Provider and caregiver satisfaction were both higher in cases where children were diagnosed during the evaluation compared to cases where the child was not diagnosed or when the physician was uncertain about the diagnosis. Finally, providers who did not encounter technical difficulties were more satisfied than providers who did.

Implications: These results suggest that telehealth evaluations are a viable option for diagnosing autism in young children, which can increase access and reduce wait times for diagnostic evaluations. However, providers should account for caregiver preferences for telehealth appointments. One possible approach is an initial telehealth evaluation followed by an in-person assessment in cases when providers are less certain about the diagnosis. Furthermore, these results illustrate the importance of telehealth training, including technical training (e.g., equipment setup), to increase the confidence of providers in telehealth diagnostic evaluations.

At-a-Glance

Incorporating autism screening into early intervention settings may improve early detection, which is required for access to services and supports.

Background: Research has shown that universal screening in pediatric primary care settings is not sufficient to identify all children with ASD. Furthermore, children who are racial or ethnic minorities, non-English speaking, or from low-income families are less likely to receive a timely ASD diagnosis. However, for children under 3 years old who may be at risk for or experiencing developmental delays, the Individuals with Disabilities Education Act (IDEA) Part C ensures access to early intervention services in all U.S. states and territories. Early intervention specialists, with their expertise in early childhood and disabilities, may be well equipped to provide ASD screening. This study evaluated whether a screening protocol for ASD implemented in early intervention settings can increase rates of ASD diagnosis.

Methods & Findings: This study utilized a large data set maintained by the Massachusetts Department of Public Health that includes records of all children receiving early intervention services. Data were included from 33,326 children who received services from 12 early intervention sites in low-income neighborhoods. At nine of the sites, children received standard care. At the other three sites, an ASD screening protocol was administered, including parent questionnaires in English or Spanish and an interactive assessment to evaluate children’s social and communication behavior. By analyzing administrative records containing children’s demographic information, individualized service plans, insurance claims for early intervention services, and ASD diagnoses, researchers compared rates of ASD diagnosis before and after implementation of the ASD screening protocol. They also compared the rates of diagnosis at the three sites using the ASD screening protocol to the rates at standard care sites. Implementation of the ASD screening protocol was associated with a significant increase in the rate of ASD diagnosis compared to the other standard care sites. This increase was larger among children from Spanish-speaking families versus other families and among boys versus girls.

Implications: This study represents the first comprehensive evaluation of ASD screening in early intervention settings. These results demonstrate that incorporating ASD screening into these settings may help improve autism detection and diagnosis early in life, especially among children from Spanish-speaking families. Improving detection will enable more children to receive a diagnosis, which is a prerequisite for many important autism services and supports.