Concerns about autism spectrum disorder (ASD) often lead families to seek a formal evaluation. Seeking an evaluation is a significant step, involving multiple professionals and distinct stages. This guide clarifies where to go and what to expect as you seek a formal diagnosis for your child. The journey begins not at a specialized clinic, but with your child’s existing healthcare provider.
Starting the Process: Primary Care Screening
The first and most accessible location to start the testing process is your child’s Primary Care Provider (PCP) or pediatrician. These providers are the gatekeepers to specialized services and are responsible for routine developmental monitoring during well-child visits. The American Academy of Pediatrics recommends specific screening for ASD at the 18-month and 24-month check-ups. Parents often complete a standardized questionnaire, such as the Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F), during these appointments. This tool is a parent-reported screening instrument designed to assess a child’s risk for ASD between 16 and 30 months of age.
If the screening tool indicates a medium or high risk, the PCP will facilitate the next steps, which involve a more in-depth, formal evaluation. Before your initial appointment, document specific behaviors, communication patterns, and developmental milestones that concern you. This detailed information will assist your pediatrician in determining the urgency and type of specialist referral needed. The PCP’s role is not to provide the final diagnosis but to identify risk and initiate the referral process to qualified diagnostic professionals.
Specialized Diagnostic Professionals
Once screening suggests the need for further evaluation, your child will be referred to specialized professionals qualified to make a formal ASD diagnosis. Because a diagnosis requires a thorough understanding of development and behavior, seek out a professional or center with extensive experience in ASD.
Specialists who conduct these comprehensive evaluations include:
- Developmental Pediatricians, who have advanced training in developmental-behavioral medicine.
- Licensed Child Psychologists specializing in neurodevelopment.
- Child and Adolescent Psychiatrists.
- Pediatric Neurologists, especially when co-occurring conditions are a concern.
Due to high demand, wait times for an appointment can range from several months to over a year. Ask to be placed on a cancellation list to potentially be seen sooner.
The Formal Diagnostic Evaluation
The formal diagnostic evaluation is a comprehensive process that determines whether your child meets the established criteria for autism spectrum disorder, typically following the guidelines in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5). The diagnosis is behavioral, based on observable behaviors and developmental history, not on a medical test. The evaluation is often multidisciplinary, involving several components to gather a complete picture of the child’s functioning.
A significant part of the process involves a detailed parent interview to gather a complete medical and developmental history, including when specific milestones were met. The diagnostician conducts a direct observation of the child, often using a standardized, activity-based assessment tool like the Autism Diagnostic Observation Schedule-Second Edition (ADOS-2). During the ADOS-2, the clinician engages the child in structured play and social activities designed to elicit behaviors related to communication and social interaction. Another tool that may be used is the Childhood Autism Rating Scale (CARS-2). The professional combines the results of these standardized tools with the interview and clinical judgment to arrive at a diagnosis.
Connecting with Intervention and Support Services
Following a formal diagnosis, the next step is accessing intervention and support services. Early diagnosis and the prompt initiation of services can lead to significant positive long-term effects on a child’s symptoms and overall development. The first place to look is your state’s Early Intervention program, which provides services for children from birth to age three who have developmental delays or disabilities, as mandated by the Individuals with Disabilities Education Act (IDEA).
You will likely be referred to specific therapies that address the core challenges of ASD, including Applied Behavior Analysis (ABA) therapy, Speech Therapy, and Occupational Therapy. ABA is a well-researched intervention that focuses on improving specific behaviors through reinforcement strategies. Speech Therapy targets communication skills, while Occupational Therapy helps children develop skills necessary for daily living and managing sensory processing issues. For children aged three and older, local public schools become the primary location for receiving services, including special education and related therapies.