Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by social communication skill deficits and restricted and repetitive patterns of behavior, interests, and activities that typically appear within the first 2 years of life. ASD has a prevalence of 1:36 children. [Maenner: 2023] Using screening tools for ASD in early childhood can help primary care providers detect symptoms more reliably than surveillance alone and lead to early intervention, which can improve developmental outcomes.

Other Names

Concerns despite a negative screen
Screening tools may have false negative results that can delay diagnosis and intervention. When concerning behaviors are reported by the caregiver or observed during a well-child visit, despite a negative autism screen, consider referring for a formal evaluation.

Refer for behavioral therapy while awaiting a formal evaluation
Due to prolonged wait times for diagnostic testing, some Medicaid and private insurers will cover evidence-based behavioral therapy, such as applied behavioral analysis (ABA), for a child strongly suspected of having autism. For children under age 3, also provide a referral to Early Intervention. Any child with a suspected speech and/or language delay should also be referred to audiology for a hearing evaluation.

Validation issues
Many Level 1 screening tools used in a low-risk population were initially validated in at-risk populations or children already diagnosed with ASD. As a result, their stated psychometric properties may not reflect the tool’s performance in the general population. In addition, many ASD screening tools were validated using DSM-IV (or earlier) diagnostic criteria for autism or pervasive developmental disorders. When a screening tool has been translated into multiple languages, validation data are frequently not available for non-English versions.

Hyman SL, Levy SE, Myers SM.
Identification, Evaluation, and Management of Children With Autism Spectrum Disorder.
Pediatrics. 2020;145(1). PubMed abstract / Full Text

Lipkin PH, Macias MM.
Promoting Optimal Development: Identifying Infants and Young Children With Developmental Disorders Through Developmental Surveillance and Screening.
Pediatrics. 2020;145(1). PubMed abstract

Though the U.S. Preventive Services Task Force in 2016 found insufficient evidence to recommend screening for ASD in young children who have had no concerns of ASD raised by their parents or a clinician, the American Academy of Pediatrics (AAP) and the Council on Children with Disabilities advise the following: [Hyman: 2020] [Lipkin: 2020]

• Provide ongoing developmental surveillance at every well-child visit.
• Implement autism screening at 18 and 24 months.
• Develop a plan for referral and further evaluation of children with a positive screen or a family member or clinician with concerns.

Surveillance Tips

Communication and Symbolic Behavior Scales Developmental Profile (CSBS DP) Infant-Toddler Checklist
This focused developmental screen quantifies a child’s proficiency in 3 subdomains: social and emotional communication, receptive and expressive speech, and symbolic behavior. It can be used earlier than many autism-specific screens, although it has a low positive predictive value for ASD alone.

• Format: 24-item, paper or computerized questionnaire, 5-10 minutes for parent/professional report (scored <2 minutes by medical staff)
• Age range: Functional communication age between 6 months and 24 months
• Languages: English
• Sensitivity=89% and specificity=89% for ASD or other developmental delays; however, positive predictive value of 20% for ASD alone when used as a stand-alone broadband screener. [Wetherby: 2008] [Towle: 2016] Scoring based on 10th percentiles.

Infant/Toddler Checklist from the Communication and Symbolic Behavior Scales Developmental Profile ( 56 KB)

Communication and Symbolic Behavior Scales Developmental Profile (CSBS DP) Infant-Toddler Checklist ( 51 KB)

Modified Checklist for Autism in Toddlers – Revised, with Follow-Up (M-CHAT-R/F)
This well-studied, 2-step autism screen uses 20 Yes/No questions about joint attention, pretend play, repetitive behaviors, and sensory differences. The scoring algorithm places children in 3 risk categories, with the intermediate category prompting standardized follow-up questions. This revision to the M-CHAT reduced the initial screen-positive rate while increasing ASD detection. About half of the 7% of children in the medium- or high-risk categories were diagnosed with ASD. The majority of the remaining children were found to have another developmental disorder or concern. M-CHAT-R/F has been translated into many languages and contexts; although not all are validated, their availability makes it a desirable option for many practices.

• Format: 20-item, 5-10 minutes to complete (~1 minute to score first part but may take an additional 5-10 minutes to perform a follow-up interview in the office or over the telephone for medium-risk respondents), paper and online forms, first step completed by parent/caregiver, second step (when indicated) completed by a clinician for the paper version (or by the parent in online versions in development)
• Age range: 16–30 months of age
• Languages: >50 languages in printable forms, and English and Spanish online versions. Most of these translations have not been formally validated or validation is still underway.
• Scoring: The initial step is administration of the M-CHAT-R/F to stratify into low-, medium-, and high-risk categories. For the medium-risk group (scores of 3-7 on the first part), use the follow-up tool to ask specific questions to improve specificity and determine need for referral. Refer high-risk patients (scores of ≥8 on the first part) directly for further evaluation.
• Sensitivity = 85% - sensitivity may be lower in some settings. [Carbone: 2020] Specificity = 99% [Robins: 2014]

Parent’s Observations of Social Interactions (POSI)
POSI is a component of the Survey of Well-Being of Young Children (SWYC), encompassing screening and surveillance topics at every well-child visit. The components may be bundled or used separately. Scoring algorithms for each component of the SWYC can be done in Excel, manually, or via the electronic medical record in an integrated eSWYC system. The brevity of the POSI makes it appealing; however, a higher screen-positive rate in the primary care setting presents challenges in determining which children to refer for formal evaluation.

• Format: 7-item screen that is part of a set of age-specific tools, usually completed in less than 5 minutes. Asks parents to rate the consistency of behaviors (e.g., sometimes, always, never).
• Age range: 16-35 months and 31 days. The POSI is integrated into the 18-, 24-, and 30-month SWYC screens.
• Languages: English, Spanish, Khmer, Burmese, Nepali, Portuguese, Haitian-Creole, and Arabic
• Scoring: ≥3 indicates increased risk
• Sensitivity=83-93% and specificity=42-75% in a primary care setting [Hyman: 2020]

Talking with Parents

Testing

Referrals

Care Coordination

Monitoring

Level 2 Autism Screening Tools

Services to help evaluate children for ASD and provide developmental services during the diagnostic process may include:

Early Intervention for Children with Disabilities/Delays (see RI providers [13])
Federally supported and provide developmental assessments and therapies for children ages 0-36 months at risk of developmental delays. A quality Early Intervention Program should provide:

• Full assessment of a child's current health and developmental status
• Service coordination among providers, programs, and agencies
• Strategies to build on family concerns, priorities, and resources
• Services including occupational therapy, physical therapy, and speech-language therapy

Head Start/Early Head Start (see RI providers [18])
Infant/preschool services, such as Early Head Start for children ages 0-3 years and Head Start for children ages 3-5 years, provide learning opportunities and parent training to help children maintain or develop skills to help them be ready to learn when they enter school.

School Districts (see RI providers [64])
Children ages 3 and older can be evaluated by their school district for special education. After neuropsychological testing for special education services, a child may obtain an educational diagnosis of autism, meaning that the child qualifies for autism-oriented educational interventions to increase their likelihood of success in the school setting.

The educational neuropsychological evaluation may include an Autism Diagnostic Observation Standard, 2nd Edition (ADOS-2), or the Autism Diagnostic Interview-Revised (ADI-R), both considered the “gold standard” for testing for ASD, or it may rely on less extensive evaluation tools. Because of this variability, an educational diagnosis may or may not also result in a medical diagnosis of ASD. Review the child’s neuropsychological testing thoroughly, and share this information with the autism specialist evaluating the child to see if additional testing is still warranted.

Behavioral Therapies (see RI providers [32])
These programs focus on improving behavioral skills for children with identified developmental delays or behavioral conditions.

General Counseling Services (see RI providers [30])
This category includes all types of counselors/counseling for children.  Once on the page, find results by city or use the Search within this Category field.

Psychiatry/Medication Management (see RI providers [80])
Often working with child psychologists, psychiatrists can prescribe medications that treat underlying medical or mental health conditions. They do not usually diagnose ASD.

Autism Programs (see RI providers [4])
Condition-specific clinics, such as a clinic for autism, may be available where children can have formal testing for autism and/or have access to specialized and multi-disciplinary care.

CSHCN Clinics (see RI providers [13])
Some states may have state-funded or federally funded clinics with expertise in diagnosing or coordinating care for children with complex conditions, including those with developmental delays.

Developmental - Behavioral Pediatrics (see RI providers [12])
Specialty-trained pediatricians may diagnose autism. Developmental pediatricians provide evaluations of developmental delays and advice on treatments.