Comprehensive diagnostic assessment of autism: a guide to healthcare professionals to support families

A comprehensive diagnostic assessment of autism (CDE) is a key step in accurately identifying autism spectrum disorder (ASD). Medicaid and most other insurances must be eligible for certain therapies, such as applying behavioral analysis (ABA) therapy or accessing disability services. Pediatricians typically perform autism screening on 18- and 30-month couple visits, but often delays recommending a positive diagnostic evaluation for a child with a positive screening, which affects early intervention.

Healthcare providers play a vital role in not only conducting assessments, but also in guiding families through overwhelming experiences plagued by waitlists and misinformation. Transparent communication, sensitivity to parental concerns, and clear interpretation of procedures can help increase trust and alleviate anxiety among patients and providers.

What is a comprehensive diagnostic assessment of autism?

Unlike brief screening, CDE involves a variety of diagnostic tools to evaluate an individual’s developmental history, cognitive function, and behavioral profile. It is crucial to look at the “whole child” to accurately diagnose ASD and identify any concurrent illnesses such as ADHD, anxiety or intellectual disability. This test usually involves collecting data before appointment, which takes about 2-4 hours. Healthcare professionals should aim to use assessment as an opportunity for growth and support by assuring parents that the diagnosis does not define the child, but rather open doors and resources to help raise children and promote their full potential. It is important to acknowledge parents’ concerns surrounding stigma of autism and remind them that they are at the location of the driver for evaluation and diagnosis.

Key components of assessment

1. Development and medical history
   • Parents or caregivers are detailed to understand early developmental milestones, medical history, family history of mental health status, and any concerns observed at home or school. Children’s behaviors usually differ in school settings compared to family settings, so it may be necessary to conduct a teacher interview.
   • Any past assessments that the child has completed (occupational therapy, speech and speech pathology, genetic testing, neurological testing, psychological testing, etc.) were also reviewed.

Provider's tips: Providers should remind parents that their insights are crucial and encourage open discussion without worrying about judgment. It is important to set expectations early on by explaining the purpose of collecting a broad history and confirming parents’ expertise to their children.

2. Standardized behavioral assessment
   • A timeline for diagnostic observation of autism, the second edition (ADOS-2) is used as a gold standard tool for evaluating autism and is also a requirement for insurance providers and government entities. It provides a structured way to observe social interactions, communications, and repetitive behaviors. It is developed in such a way that children will play different games with the examiner in an informal and comfortable environment and answer different questions.
   • Tools such as the Vineland-3 Adaptive Behavior Scale, Third Edition and Social Response Scale, Second Edition (SRS-2) are used with ADOS-2 to determine an individual’s ability to adapt to their social environment and evaluate their cognitive and executive functions.
   • Other psychiatric tools, such as the evaluation of NICHQ Vanderbilt parents and screening of diseases associated with childhood anxiety disorders, are sometimes used to further evaluate symptoms associated with ADHD, anxiety, depression, obsessive-compulsive disorder, oppositional disorders and other similar diseases.

Provider's tips: Explain the purpose of each tool in parent-friendly language, giving the family peace of mind assessments aimed at capturing strengths and challenges. These tests would have been a fun way to attract children, and children often don’t realize they are being evaluated when they think they are just playing.

3. Cognitive and academic tests
   • Intelligence tests, such as the Wechsler Intelligence Scale for Children, Fifth Edition (WISC-V) and Woodcock-Johnson, Fourth Edition (WJ-IV) (WJ-IV), are used to exclude or rule in concurrent intellectual disability.

Provider's tips: Emphasizing that these tests are not “pass/fail” assessments, but tools to understand how children learn best and their level of executive function.

4. Observe and collaborate
   • The collaborative team was observed in clinical settings during appointments, including children, adolescents and adult psychiatrists.
   • In most cases, the results of the parents were given immediately after ADOS-2 administration and a fully developed treatment plan with recommendations were discussed.

Provider's tips: Normalize clinical observations by explaining its purpose to parents in advance and helping to reduce potential anxiety about “surveillance.”

Who should seek assessment?

• Children starting at 18 months have shown signs of developmental delay, such as delayed language, social function, motor skills, abnormal playful behavior or repetitive behaviors such as arm slap or rotation.
• Children with social difficulties, rigid routine or sensory sensitivity.
• Adolescents and adults who may be covered up or misdiagnosed at a young age (especially the co-occurring ADHD diagnosis).
• Individuals seeking challenges in communication, relationships, or anxiety.

Why early diagnosis is important

Obtaining autism diagnosis opens the door to tailor-made support services such as speech therapy, occupational therapy, behavioral interventions, and social skills training. In the first five years of life, we have seen the greatest brain growth. In the long run, providing interventions during this period (preferably before age 3) shows the greatest success rate. For older individuals and teenagers, diagnosis can provide clear, validated and access to resources such as work accommodation, Medicare and Social Security.

Expectations after evaluation

After the assessment, the family received a detailed written report that included a complete overview of past assessment and development history, test results for each test, diagnostic impressions, and personalized treatment recommendations and resources. The report is the roadmap for the next step – whether it’s starting treatment, creating a personalized education program (IEP) or planning for long-term support. Following closely behind is getting the resources you need so that parents don’t have to browse the world of special needs alone.

How to deal with parents after evaluation

When addressing autism diagnosis after evaluation, testing and screening, it is important to emphasize the child’s strengths and positive characteristics first. Healthcare providers should use clear and understanding language to explain the diagnosis to understand how their children process information and open up support tools. Acknowledging parents’ emotions to assure that this diagnosis does not change their children and stressing that their feelings are effective will go a long way in helping parents receive the diagnosis. It is also normal for parents to experience sad times, and they have a look at what this diagnosis might mean for their child’s future. A large part of post-evaluation diagnosis and check-in is an outline of the plans for the next step. Depending on the child's insurance, their pediatrician may need to provide a referral for recommended treatments, such as ABA, OT, SLP, PT or DBT therapy. Medical professionals should make sure patients know this is an ongoing partner and continue to support them as they navigate forward. Helping parents manage their expectations while serving on the waitlist and providing ongoing support will help your patients thrive in the future.

Photo: Eakrin rasadonyindee, Getty Images

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