A comprehensive autism diagnostic evaluation (CDE) is a critical step in accurately identifying Autism Spectrum Disorder (ASD). It is required by Medicaid and most other insurances to qualify for certain therapies such as Applied Behavioral Analysis (ABA) therapy or access disability services. Pediatricians routinely perform autism screenings at 18- and 30-month well-child visits but there is often a delay in referring a child with a positive screen for a full diagnostic evaluation which impacts early intervention.
Healthcare providers play a crucial role in this process, not only in conducting evaluations, but also in guiding families through what can be an overwhelming experience plagued by waitlists and misinformation. Transparent communication, sensitivity to parental concerns, and clear explanations of procedures help boost trust and reduce anxiety for both the patient and the provider.
What is a comprehensive autism diagnostic evaluation?
Unlike a brief screening, a CDE involves multiple diagnostic tools to assess an individual’s developmental history, cognitive functioning, and behavioral profile. It is essential to view the “whole child” to accurately diagnose ASD and identify any co-occurring conditions, such as ADHD, anxiety, or an intellectual disability. The test typically consists of data gathering prior to the appointment in office which takes approximately 2-4 hours. Healthcare professionals should aim to frame the evaluation as an opportunity for growth and support by reassuring parents that a diagnosis does not define their child, but opens up doors and resources to help support their child and promote their full potential. It is important to acknowledge parental concerns surrounding the stigma of autism and remind them that they are in the driver’s seat of the evaluation and diagnosis.
Key components of the evaluation
Developmental and medical history
Parents or caregivers are interviewed in detail about early developmental milestones, medical history, family history of mental health conditions, and any concerns observed at home or in school. Children will often behave differently in school settings versus home settings so a teacher interview may be warranted.
Any past evaluations that the child has completed (Occupational Therapy, Speech and Language Pathology, Genetic Testing, Neurological Testing, Psychological Testing, etc.) are also reviewed to understand the bigger picture of the child’s behaviors and medical history throughout their life.
Tip for providers: Providers should remind parents that their insights are critical and encourage open discussion without fear of judgment. It’s important to set expectations early by explaining the purpose of gathering extensive history and validating parents’ expertise about their child.
Standardized behavioral assessments
The Autism Diagnostic Observation Schedule, Second Edition (ADOS-2) is used as the gold-standard instrument for evaluating Autism and the one most requested by insurance providers and government entities. It provides a structured way to observe social interaction, communication, and repetitive behaviors. It is developed in a way where the child will play different games and answer different questions with the examiner in an informal and comfortable setting.
Tools such as the Vineland-3 Adaptive Behavior Scales, Third Edition and Social Responsiveness Scale, Second Edition (SRS-2) are used in conjunction with the ADOS-2 to identify how well the individual is able to adapt to their social environments and evaluate their cognitive and executive functioning.
Other psychiatric tools such as the NICHQ Vanderbilt Parent Assessment and Screen for Child Anxiety Related Disorders are sometimes used to further evaluate symptomatology related to ADHD, Anxiety, Depression, Obsessive Compulsive Disorder, Oppositional Defiance Disorder, and other similar disorders.
Tip for providers: Explain the purpose of each tool in parent-friendly language, reassuring families that the evaluation is designed to capture strengths as well as challenges. The tests are meant to be a fun way to engage their child and the children often do not realize they are being evaluated as they think they are just playing.
Cognitive and academic testing
Intelligence testing such as the Wechsler Intelligence Scale for Children, Fifth Edition (WISC-V) and Woodcock-Johnson, Fourth Edition (WJ-IV) are utilized to rule out or rule in a co-occurring intellectual disability.
Tip for providers: Emphasize that these tests are not “pass/fail” assessments, but tools to understand how the child learns best and their level of executive functioning.
Observations and collaboration
Observations are made in the clinical setting during the appointment by a collaborative team to include a child, adolescent, and adult psychiatrist.
In most cases, the parents are given the results of the testing immediately following the administration of the ADOS-2 and a fully developed treatment plan with referrals is discussed.
Tip for providers: Normalize the clinical observation by explaining its purpose to parents ahead of time and help reduce their potential anxiety about being “watched.”
Who should seek an evaluation?
Children starting at age 18-months who are showing signs of developmental delays such as delayed language, social functioning, motor skills, unusual play behaviors, or repetitive behaviors such as arm flapping or spinning.
Children with social difficulties, rigid routines, or sensory sensitivities.
Adolescents and adults who may have masked symptoms or been misdiagnosed at a younger age (especially with a co-occurring diagnosis of ADHD).
Individuals seeking clarity around challenges with communication, relationships, or anxiety.
Why early diagnosis matters
Obtaining an autism diagnosis opens the door to tailored support services such as speech therapy, occupational therapy, behavioral interventions, and social skills training. During the first five years of life is when we see the greatest brain growth. Providing interventions during this period (preferably before the age of 3 years old) shows the greatest success rates in the long run. For older individuals and adolescents, a diagnosis can offer clarity, validation, and access to resources such as work accommodations, healthcare insurance, and social security disability.
What to expect after the evaluation
Following the assessment, families receive a detailed written report that includes a full overview of past evaluations and developmental history, test results for each test administered, diagnostic impressions, and individualized treatment recommendations and resources. This report serves as a roadmap for next steps — whether it’s starting therapy, creating an Individualized Education Program (IEP), or planning for long-term support. It is followed by assistance with getting the resources they need so that the parents do not have to navigate the special needs world alone.
How to address parents after evaluation
When addressing an autism diagnosis after evaluation, testing, and screenings, start by emphasizing the child’s strengths and positive traits. Medical providers should use clear, empathetic language to explain the diagnosis as a tool for understanding how their child processes information and opening the doors for support. Acknowledging parents’ emotions, offering reassurance that this diagnosis does not change their child, and emphasizing that their feelings are valid will go a long way in helping parents to accept the diagnosis. It is also normal for a parent to go through a grieving period while they come to terms with what this diagnosis may mean for their child’s future. A significant part of post-evaluation diagnosis and check-ins are outlining a plan for next steps. Depending on the child’s insurance, their pediatrician may need to provide referrals for the recommended therapies such as ABA, OT, SLP, PT, or DBT therapy. Medical professionals should make sure their patient knows that this is an ongoing partnership with continued support as they navigate forward. Helping the parents to manage their expectations when it comes to waitlists for services and providing ongoing support will help your patients thrive in the future.
Photo: Eakrin Rasadonyindee, Getty Images
Nicole Clark is the Co-Founder and CEO of Adult and Pediatric Institute for Health and Wellness. She is a Board-Certified Psychiatric Mental Health Registered Nurse and has over 18 years of experience in trauma and psychiatric medicine. She started her career in the Navy as a Navy Corpsman which is where she fell in love for caring for people and helping them achieve their best sense of self.
Although she is a successful healthcare entrepreneur, her most valued role is wife and mother. Nicole has two special needs daughters, so she knows firsthand how difficult it can be to find quality help for your children. She is committed to ensuring that no other families have to go through the struggles she went through to get the best possible care for their child.
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