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 1:59 children. [Centers: 2019] 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. This resource provides primary care clinicians with guidance about screening for autism in the medical home.

Other Names & Coding

Concerns despite a negative screen
Because screens 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 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.

Validation issues
Many Level 1 screens used in a low-risk population were initially validated in at-risk populations or children already diagnosed with ASD, so their stated psychometric properties may be somewhat misleading. In addition, many ASD screens were validated using DSM-IV (or earlier) diagnostic criteria for autism or pervasive developmental disorders. When a screen has been translated into multiple languages, validation data are frequently not available for non-English versions.

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: [Zwaigenbaum: 2015] [Johnson: 2007]

• 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 who have a positive screen or a family member or clinician with concerns.

Surveillance Tips

Level 1 screens are “universal” and developed for use in general populations regardless of pre-existing risk factors.

Level 2 screens are designed for children with increased risk for ASD (e.g., siblings of children with ASD or children referred for developmental evaluation) and are not commonly performed in a primary care setting.

The following provides guidance on selecting a Level 1 screen appropriate for use in the primary care.

Selecting a Screen

Level 1 screens are for use in low-risk populations, such as those often seen in primary care.

Communication and Symbolic Behavior Scales Developmental Profile (CSBS DP) Infant-Toddler Checklist
This focused, developmental screen quantifies an infant’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.

A free, downloadable PDF with scoring sheet is available at Infant/Toddler Checklist from the Communication and Symbolic Behavior Scales Developmental Profile ( 56 KB) and a CD-ROM (for purchase) at 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 Yes/No questions about joint attention, pretend play, repetitive behaviors, and sensory abnormalities. It is considered more accurate than the previously used M-CHAT and CHAT when both steps are used. The multiple validation studies of the M-CHAT and availability in many languages make this a reliable and appealing option for many practices. When compared to surveillance alone, use of the M-CHAT-R/F improves ASD identification time by about 2 years. [National: 2001] Of the 7% of children who were in the medium- or high-risk categories, about half ended up with a diagnosis of ASD, and the majority of the remaining children were found to have another developmental disorders or concerns.

• 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
• 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: Using an initial step with a cutoff of 3, sensitivity=73% and specificity=89%, but then adding the second step with a cutoff of 2 increased sensitivity to 94%. 47.5% of children referred for evaluation based on positive 2-step M-CHAT-R/F were diagnosed with an ASD. [Robins: 2014]

Free to download or access online at Modified Checklist for Autism in Toddlers – Revised, with Follow-Up (M-CHAT-R/F).

Parent’s Observations of Social Interactions (POSI)
POSI is a component of the Survey of Well-Being of Young Children (SWYC), which encompasses 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, more validation studies in low-risk primary care settings would be useful to reduce false positives.

• 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% and specificity=74% in a primary care setting. According to the SWYC website, these are “comparable” to other similar instruments, e.g., ASQ-SE and M-CHAT.

Free access online at The Survey of Well-Being of Young Children (SWYC). The other SWYC components include: Developmental Milestones Checklists, Baby Pediatric Symptom Checklists, Preschool Pediatric Symptom Checklists, the Edinburgh Maternal Depression Screen, and Family Risk Factors.

Quantified Checklist for Autism in Toddlers-10 (Q-CHAT-10)
The Q-CHAT-10, derived from the 25-item Q-CHAT, focuses on joint attention, pretend play, language development, and other aspects of social communication. More validation data are needed to determine sensitivity and specificity of the screener as a broadband instrument for autism; however, its simplicity shows promise. [Zwaigenbaum: 2015]

• Format: A 10-item, <5 minutes, paper forms, completed by parent/caregiver
• Age range: 18-24 months
• Languages: The 10-item version is available in English, Spanish, Arabic, Chinese, German, Hungarian, Indonesian, Portuguese, Romanian, and Serbian. The Q-CHAT 25-item version is also available in French, Hebrew, Italian, Polish, Romanian, Slavic, and Swedish.
• Scoring: Uses a 5-point Likert scale - ≥3 indicates increased risk
• Sensitivity: A case-control study demonstrated sensitivity of 91% and specificity of 89%. [Raza: 2019]

Free download with scoring sheet at Autism Research Centre (ARC) Downloadable Tests.

Talking with Parents

Testing

Referrals

Care Coordination

Monitoring

Level 2 Autism Screens

Emerging Autism Screens

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 NW providers [3])
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

Be aware that Early Intervention does not diagnose ASD and may not provide ASD-specific interventions or communication with the medical home.

Head Start/Early Head Start (see NW providers [0])
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 that will help them be ready to learn when they enter school.

School Districts (see NW providers [0])
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 his or her 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 who is evaluating the child to see if additional testing is still warranted.

Behavioral Therapies (see NW providers [1])
These programs focus on improving behavioral skills for children with identified developmental delays or behavioral conditions.

General Counseling Services (see NW providers [1])
This category includes all types of counselors/counseling for children.  Once on the page, the search can be narrowed by city or using the Search within this Category field.

Psychiatry/Medication Management (see NW providers [0])
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 NW providers [0])
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 NW providers [2])
Some states may have state-funded or federally funded clinics that have expertise in diagnosing or coordinating care for children with complex conditions, including those with developmental delays.

Developmental - Behavioral Pediatrics (see NW providers [1])
Specialty trained pediatricians may diagnose autism. Developmental pediatricians provide evaluations of developmental delays and advice on treatments.