A Guide to Understanding an Autism Diagnosis and Documentation
October 29, 2024
October 29, 2024
Families, if your child has already received an autism diagnosis, first, give yourself a hug or high-five because you have already taken the first step on the journey to give your child every opportunity in life. Once you have the diagnosis for autism spectrum disorder (ASD), you may be wondering, “What does this all really mean?”
Navigating the autism diagnostic process for your child can feel overwhelming, especially when you are handed a stack of documents filled with unfamiliar terms and data. Understanding these reports is important, not only to gain knowledge around the diagnosis but also to ensure your child receives the proper care and support moving forward.
At Hopebridge Autism Therapy Centers, our diagnostic team created a guide to help you break down the different sections of a diagnostic report, clarify the tests administered, and explain the medical terminology often found in these reports.
To learn more about a specific topic, please click the corresponding section below:
Before diving into the specifics of the diagnostic document, it is important to know how autism is typically diagnosed. Autism spectrum disorder (ASD) is a neurodevelopmental condition, which means it affects how the brain develops. The diagnosis process involves a combination of developmental screenings, medical evaluations, psychological assessments, and observational tools.
Developmental/ASD Screening
Developmental or ASD screenings are often the first step when concerns about your child’s behavior arise. These screenings may occur during routine well-child visits and may involve your pediatrician asking questions about your child’s language, social skills, and behaviors. Your pediatrician may use an autism screening tool like the M-CHAT (Modified Checklist for Autism in Toddlers), which is designed to detect early signs of ASD in children as young as 15 months. Your pediatrician may also use a more general development screener, which will ask questions about your child’s language development, cognitive development, motor development, adaptive skills, social skills, etc. While a screening does not provide a diagnosis, it flags concerns that may warrant further evaluation.
Comprehensive Diagnostic Evaluation
If a screening suggests possible signs of autism, your child will be referred for a comprehensive diagnostic evaluation. This evaluation may involve one or multiple professionals, such as a developmental pediatrician, psychologist, speech-language pathologist, and occupational therapists, psychiatrist, or developmental pediatrician. They will conduct various tests to assess your child’s social communication and behavior, and may also assess your child’s language skills, cognitive skills, emotional development, and adaptive skills.
The final diagnostic report is the culmination of all assessments and evaluations. While the format may vary depending on the clinician and institution, most reports follow a similar structure. Here is an outline of the sections you will typically find:
Numerous tests and assessments contribute to the autism diagnosis. Each test serves a unique purpose and looks for different behaviors or abilities. Below is a breakdown of some of the most common tests, but this list is not inclusive of all tests.
Note that each state and insurance provider have unique requirements, and you should reach out to local resources for more details if your tests are not listed below.
ADOS-2 (Autism Diagnostic Observation Schedule): The ADOS-2 is considered one of the most reliable tools for diagnosing autism. It is an observational assessment designed to assess communication, social interaction, play, and restricted or repetitive behaviors in children. The test is divided into modules based on the child’s age and language level. The modules each have different activities matched to be appropriate for the child’s developmental and language level to assess their social communication skills, repetitive behaviors, restricted interests, and sensory-seeking and avoiding behaviors.
CARS2(Childhood Autism Rating Scale, Second Edition): The CARS2 is a widely used tool for identifying autism in children. It is a behavior rating scale designed to help clinicians differentiate autism from other developmental disorders. The assessment evaluates a child’s behavior in areas such as social interaction, communication, emotional response, and sensory sensitivities. The CARS2 provides ratings based on observations of a child’s behavior, which are then used to determine the severity of autism symptoms. There are two versions of the CARS2, depending on the age and cognitive level of the child, making it suitable for children across a wide range of ages and developmental levels.
ADI-R (Autism Diagnostic Interview – Revised): This is a structured interview conducted with the child’s parent or caregiver. It focuses on the child’s developmental history and behavior, helping to identify signs of autism that may not be easily observable in a single session.
EarliPoint: EarliPoint is an innovative, computer-based assessment tool used to aid in the early identification of autism in young children. It employs eye-tracking technology to measure how children visually engage with social and non-social stimuli, such as faces, objects, and movements. By analyzing patterns of visual attention and gaze, EarliPoint provides insights into a child’s social engagement and developmental progress. This non-invasive, rapid test is designed to detect early signs of autism and other developmental delays, offering a way to support earlier interventions during critical developmental periods.
Tele-ASD-Peds(Telehealth Autism Spectrum Disorder–Pediatrics): Tele-ASD-Peds is a diagnostic assessment tool specifically designed for use via telehealth to evaluate young children for autism. It allows clinicians to observe and assess a child’s communication, social interactions, and play behavior in real-time through a virtual platform. Caregivers actively participate in the assessment by facilitating certain tasks and activities under the guidance of the clinician. Tele-ASD-Peds is especially useful for families in remote or underserved areas, offering a convenient and accessible method for early autism screening and diagnosis.
Adaptive Assessment: Understanding Daily Functional Behavior
Vineland Adaptive Behavior Scales: This test evaluates a child’s adaptive behaviors, such as communication, daily living skills, and socialization. It helps assess how well the child is able to cope with real-life demands.
ABAS (Adaptive Behavior Assessment System): The ABAS is a widely used tool for evaluating adaptive functioning in individuals from early childhood through adulthood. It assesses practical, everyday skills required for independent living across various domains such as communication, self-care, socialization, and functional academics. The ABAS uses questionnaires completed by parents, teachers, or the individuals themselves, making it a flexible tool for evaluating how well a person is coping with daily tasks. It is often used in educational and clinical settings to identify strengths and weaknesses in adaptive skills and to guide intervention planning.
Cognitive Assessments: Understanding IQ and Learning Styles
Cognitive tests, like the Wechsler Intelligence Scale for Children (WISC-V), are used to measure how a child’s brain works. These tests provide insights into a child’s strengths and weaknesses in areas like verbal comprehension, working memory, and problem-solving.
Autism does not inherently affect intelligence, but some children on the spectrum may have intellectual disabilities or unique ways of thinking. Depending on the child’s age and developmental level, a shorter cognitive test or screener may be used to understand their abilities.
Examples of these tests include Wechsler Intelligence Scale for Children, Fifth Edition (WISC-V), Wechsler Preschool and Primary Scale of Intelligence (WPPSI-IV), and Bayley Scales of Infant and Toddler Development (Bayley-III). For younger children, especially those younger than age 8, tests may focus more on cognitive development rather than specific cognitive skills. Examples of these tests include the Developmental Assessment of Young Children (DAYC-2) and Developmental Profile 4 (DP-4).
Children being assessed for autism also often have speech or language challenges, which can make their scores appear lower on tests that require verbal responses. In these cases, nonverbal tests, such as the Preschool Test of Nonverbal Intelligence (PTONI), can provide a clearer picture of their cognitive abilities.
The diagnostician will determine which assessment is most appropriate for each child.
Social and Emotional Assessments
To assess social and emotional development, clinicians may use various questionnaires and rating scales, such as:
Sensory Profile and Occupational Therapy Assessments
Many children with autism experience sensory processing challenges, which can result in being overly sensitive or under-responsive to sensory input. Occupational therapists often use tools like the Sensory Profile 2 to assess how a child processes sensory information and its impact on daily activities.
These evaluations, along with speech assessments, can be part of a comprehensive diagnostic evaluation or conducted separately to better understand the child’s needs.
Speech and Language Assessments
Children with autism often face challenges with speech and language. Various tests can be administered during the diagnostic appointment or evaluated separately to gauge their communication abilities, such as:
Diagnostic reports often present test results in the form of scores and percentiles. Understanding what these numbers mean is crucial to interpreting the findings.
Once the diagnostic process is complete, and your child has been formally diagnosed with autism, the next steps are critical in supporting their development. The report will include recommendations tailored to your child’s unique needs, such as:
A key part of the diagnostic process for autism involves ensuring your child meets the criteria outlined in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5). This is a standardized manual used by clinicians to diagnose mental health conditions, including autism.
According to the DSM-5, ASD is defined by two primary areas:
Your child must meet criteria in both areas to receive an autism diagnosis. The DSM-5 also notes the current severity of the child’s traits using levels, which helps in determining the level of support your child may need:
To fully grasp your child’s diagnostic report, it is essential to become familiar with the common medical terms used in these evaluations. Here is a list of some key terms:
The recommendations section of the report is critical in planning the next steps for your child. These suggestions will typically focus on therapies, educational interventions, and strategies to support your child’s development at home, in school, and in social settings.
Common Recommendations Include:
Educational Recommendations:
After you have reviewed the report and understand the findings, the next step is to partner with professionals to ensure your child gets the best possible support. This includes:
As a caregiver, you are your child’s most important advocate. Understanding the diagnostic report gives you the tools you need to make informed decisions about your child’s care. Advocacy involves:
Empowering Parents to Navigate the Diagnosis
Reading and understanding your child’s diagnostic documents is the first step toward ensuring they receive the best possible care and support. While the process may seem overwhelming at first, breaking down the information into digestible sections and becoming familiar with key terms will help you feel more confident and empowered. Always remember that you have a team of professionals to guide you, and your advocacy plays a critical role in shaping your child’s future.
With a clear understanding of the diagnostic findings, appropriate interventions, and ongoing support, your child can thrive and reach their full potential. This report is not just a diagnosis; it is a roadmap for the journey ahead.
If your child has already received an autism diagnosis and is ready to move onto the next step, Hopebridge is here for you. To seek more information and schedule an evaluation for ABA therapy and/or other services like speech therapy and occupational therapy, please fill out the simple form on our website.
*Informed consent was obtained from the participants in this article. This information should not be captured and reused without express permission from Hopebridge, LLC.
Autism Therapy
February 13, 2019
'Good Day Live' on the Importance of Early Intervention for Children with Autism
Parenting Resources
June 13, 2023
What to Expect from Autism Testing: The Process for an Autism Diagnosis for Children
Parenting Resources
January 03, 2023
Best Practices for Setting Realistic Goals in ABA Therapy and at Home