A Guide to Understanding an Autism Diagnosis and Documentation

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:

1. Autism Diagnostic Process: A Step-by-Step Overview
2. Key Sections in an Autism Diagnostic Report
3. Understanding the Different Tests and What They Measure
4. Interpreting Test Scores and Percentiles
5. What Happens After the Diagnosis?
6. Key Takeaways for Parents
7. A Closer Look at the Diagnostic Criteria: DSM-5
8. Common Medical Terms in an Autism Diagnostic Report
9. Making Sense of Recommendations
10. Moving Forward: Partnering with Professionals
11. Advocating for Your Child

 

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1. The Autism Diagnostic Process: A Step-by-Step Overview

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.

2. Key Sections in an Autism Diagnostic Report

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:

• History: This section includes a background of your child’s developmental milestones, medical history, educational history, family history of neurodevelopmental disorders, and any past interventions.
• Behavioral Observations: Clinicians will observe your child during various activities to assess behaviors such as social interactions, play, and responses to sensory stimuli.
• Standardized Testing Results: This is where you’ll find the results of the various tests administered to your child, including scores and percentiles.
• Diagnostic Impressions: Based on the evaluations, the clinician will provide a summary of findings, including whether your child meets the diagnostic criteria for autism. If other conditions are present, such as ADHD or a speech-language delay, they will also be noted here.
• Recommendations: These include suggested therapies, educational accommodations, and support services based on your child’s individual needs.

3. Understanding the Different Tests and What They Measure

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:

• SCQ (Social Communication Questionnaire): This tool evaluates social communication skills based on parent or caregiver input. It helps identify difficulties with nonverbal communication, social relationships, and imaginative play.
• BASC-3 (Behavior Assessment System for Children): This test assesses a range of behaviors, including emotional regulation, social skills, and attention problems. It provides insight into how autism affects the child’s behavior in different settings, such as home or school.

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:

• CELF-5 (Clinical Evaluation of Language Fundamentals): This test evaluates expressive and receptive language skills, including the ability to follow directions, understand vocabulary, and use grammatically correct sentences.
• PPVT-4 (Peabody Picture Vocabulary Test): This test measures the child’s understanding of vocabulary words by asking them to identify pictures that correspond with spoken words.

4. Interpreting Test Scores and Percentiles

Diagnostic reports often present test results in the form of scores and percentiles. Understanding what these numbers mean is crucial to interpreting the findings.

• Raw Scores: These are the direct results from the test, such as the number of correct answers. However, raw scores alone do not provide much information without context. For this reason, raw scores are often not included in the report.
• Standard Scores: These are adjusted scores that take into account the child’s age or developmental stage. A standard score has a wide range, with 100 being the average. Standard scores are used to determine your child’s performance or abilities in reference to other children the same age. For example, a 4-year-old and a 9-year-old might get the same raw score, but their standard scores will be different because the developmental expectations for each age are different.
• Percentiles: A percentile rank indicates how your child performed compared to other children in their age group. For example, a score in the 50th percentile means your child scored as well or better than 50% of their peers, which is similar to a standard score of 100.)
• Clinical Categories / Clinical Cut-offs: Standard autism assessments often use clinical categories or clinical cut-offs, which are score ranges used to determine if a child’s abilities or behaviors fall within typical limits or indicate a potential concern. These cut-offs help professionals classify results into categories such as “average,” “at-risk,” or “clinically significant.” For instance, if a child’s score falls above a certain cut-off, it may suggest the presence of symptoms that are consistent with a diagnosis.

5. What Happens After the Diagnosis?

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:

• Therapies for Autism: Applied Behavior Analysis (ABA), speech therapy, occupational therapy, and social skills training are common interventions recommended for children with autism.
• Educational Accommodations: An Individualized Education Plan (IEP) may be developed to provide appropriate support and accommodation in school.
• Caregiver Guidance and Support: Many diagnostic reports recommend family education programs to help you understand autism and how to support your child at home.
• Autism Speaks 100 Day Kit: A free resource designed to help families navigate the early days following an autism diagnosis. Created by Autism Speaks, this kit offers practical information, support, and guidance for families of children recently diagnosed with ASD. The goal is to empower families and help them make informed decisions and create a plan of action within the first 100 days of diagnosis.

6. Key Takeaways for Parents

• Familiarize yourself with common medical terms. Understanding terms like ADOS-2, Vineland, and DSM-5 will make it easier to comprehend the report.
• Do not hesitate to ask for clarification. If something in the report does not make sense, ask the diagnosing clinician to explain it. Understanding your child’s diagnostic report is crucial, and professionals are there to help you fully grasp what it all means.
• Use the report as a roadmap. The diagnostic report is more than a collection of scores—it is a tool to guide the interventions, therapies, and support services your child may need.
• Focus on strengths as well as challenges. Many reports will highlight your child’s strengths, such as specific cognitive abilities or social skills. Focusing on these strengths can help you better support your child’s development.

7. A Closer Look at the Diagnostic Criteria: DSM-5

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:

• Deficits in Social Communication and Interaction: This includes challenges in three core areas:
  • Social-emotional reciprocity: Difficulty in normal back-and-forth conversations, sharing interests, and understanding others’ emotions.
  • Nonverbal communication: Limited use or understanding of gestures, facial expressions, and eye contact.
  • Developing and maintaining relationships: Challenges in adjusting behavior to different social situations, understanding social norms, or making friends.
• Restricted, Repetitive Behaviors and Interests: These behaviors might include:
  • Repetitive motor movements: Hand-flapping, rocking, or repeating words and phrases (echolalia).
  • Insistence on sameness: A strong need for routines, and difficulty with changes.
  • Highly restricted interests: Focus on specific topics or objects, often at an intensity beyond what is typical for the child’s age.
  • Hyper- or hypo-reactivity to sensory input: Either an over- or under-sensitivity to sensory experiences such as sounds, textures, or lights.

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:

• Level 1: “Requiring support” indicates a child whose symptoms interfere with daily functioning or hamper independence without supports in place.
• Level 2: “Requiring substantial support” indicates a child whose symptoms and impact on daily functioning are evident even with supports in place.
• Level 3: “Requiring very substantial support” indicates a child who has severe symptoms that cause severe impairments in daily functioning.
  

  Getting an autism diagnosis is the first step toward helping your child. Knowing what it means is the key.

8. Common Medical Terms in an Autism Diagnostic Report

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:

• DSM-5: The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. This is the primary reference used by clinicians to diagnose autism and other mental health disorders. Autism Spectrum Disorder falls under the neurodevelopmental disorders category, and diagnosis is based on criteria listed in this manual.
• Autism Spectrum Disorder (ASD): A neurodevelopmental disorder characterized by difficulties with social communication and the presence of restricted, repetitive behaviors.
• Echolalia: The repetition of phrases or sounds that the child hears. This can be immediate or delayed.
• Stimming: Short for self-stimulatory behavior, these are repetitive actions or movements such as hand-flapping or rocking, often used to self-soothe.
• Joint Attention: The ability to focus on an object or event with another person, a skill often delayed in children with autism.
• Sensory Processing Disorder (SPD): A condition that affects how the brain processes sensory information, leading to hypersensitivity or hyposensitivity to stimuli like touch, sound, and light.
• Developmental Milestones: Key skills children typically develop at certain ages, such as walking, talking, and socializing.
• Functional Communication: The ability to use language or gestures to convey wants and needs, a skill often assessed in speech and language evaluations.

9. Making Sense of Recommendations

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:

• Applied Behavior Analysis (ABA): A therapy based on the principles of learning and behavior. ABA is highly effective in teaching communication, social skills, and reducing problematic behaviors. Your child’s report may recommend a certain number of ABA hours per week, depending on their needs.
• Speech Therapy: If your child has delays in speech and communication, speech therapy will likely be recommended. This therapy focuses on improving language skills, pronunciation, and social communication.
• Occupational Therapy (OT): This therapy helps children develop fine motor skills, sensory processing abilities, and self-care skills. OT is especially important for children who struggle with sensory issues or need help developing life skills such as dressing and feeding themselves.
• Social Skills Groups: These groups provide a structured setting for children to practice social interactions with peers, often guided by a therapist or educator. Social skills groups are essential for children who struggle with making friends or understanding social cues.

Educational Recommendations:

• Individualized Family Service Plan (IFSP): A written document that outlines the early intervention services a child under the age of 3 will receive if they qualify for state-sponsored early intervention programs. The IFSP details their specific needs, goals, and the support the family will receive to address developmental delays or disabilities. It is a personalized plan created with the family’s input to guide their child’s development in their natural environment.
• Individualized Education Plan (IEP): If your child is age 3 or older and diagnosed with autism, they may qualify for special education services through an IEP. However, a diagnosis of autism does not automatically mean they will qualify for services through an IEP. IEPs are plans for educational needs, which means that a child’s diagnosis has to impact their ability to receive an education in order to qualify. If they do qualify, an IEP is a legally binding document that outlines the specific educational accommodations, supports, and goals for your child within the school setting. An IEP team, which includes parents, teachers, and therapists, meets annually to assess progress and update goals.

10. Moving Forward: Partnering with Professionals

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:

• Engaging with Therapists: Therapists are crucial partners in your child’s development. Make sure to schedule a meeting with any therapists recommended in the report to discuss treatment goals and expectations.
• Working with Educators: The school system plays a significant role in supporting your child’s academic and social development. Stay in close communication with your child’s teachers, special education staff, and any other school personnel who will be involved in implementing their IEP or 504 Plan. Additionally, there are 3rd parties that can assist with expertise in special education law, facilitation and communication of treatment plans, conflict resolution and more.
• Ongoing Assessments: Autism is a lifelong condition, and your child’s needs may evolve over time. Regular reassessments are essential to monitor progress and adjust therapies or interventions, as necessary. Many professionals recommend annual or biannual reviews to keep track of developmental changes and update treatment plans.

11. Advocating for Your Child

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:

• Asking Questions: If any part of the diagnostic process or report is unclear, do not hesitate to ask for clarification. Understanding the full picture is essential to making the best decisions for your child.
• Seeking a Second Opinion: If you are unsure about the diagnosis or recommendations, it is okay to seek a second opinion from another qualified professional. Having a complete and accurate diagnosis is critical to getting the right support.
• Educating Yourself: Stay informed about autism, interventions, and your child’s rights in the healthcare and educational systems. The more you know, the better equipped you will be to support your child’s unique journey.

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.

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